queerwitness

Essays plus more for the mind and spirit

Anatomy of an Illness, Part 18

Having been hospitalized every month for the past five months (November through February), I decided it was time to start end of life preparations by selecting a cemetery. After having made an appointment with the cemetery, I was informed by my nephrologist that I would need to undergo dialysis if I wanted to live beyond possibly six months. Having already made my decision that I would not undergo dialysis (recorded in my previous blog), I shared this with my nephrologist who was most appreciative of my decision. The decision made perfect sense and he knew why I didn’t want dialysis. He was happy, and said when he was down it would cheer him up. Now the task of coming to grips with my own death loomed forward. Death via chronic kidney disease can take one of two paths: (1) fluid buildup in the lungs resulting in drowning in my own fluid and thus being very painful, or (2) the toxin buildup in the blood resulting in sleeping more and more until one slips into a coma and passes. This appears to be the most probable path for me based on what has been happening so far with my sleeping more and more and with no fluid buildup in my lungs.

As I get ready to dictate some of my final thoughts, Gizmo, one of my two ginger short-hair cats is on my belly. I love that. He is a devil, but a wonderful devil. I love him very much, and he is going to miss me a great deal when I am gone. He is already hanging around me a lot. He now has shifted to the foot of the bed. The other cat is named Murfee: M U R F E E. Some people call her Mur-Feee, my friend Allan does that. She gives you mixed signals, she tries to love you, and when you extend your hand she backs away.

I am dying now, and I find death to be a very beautiful thing. I have already had one foot in the grave of this earth plane and one foot in the other plane which I call the death plane or others call the afterlife. The death plane was very beautiful, and I was happier than I have ever been in this earth life. I loved dying, and I know that must be strange to most people. I truly loved dying, and I am experiencing it. I know what happens, and I am going into the arms of Durga, the Mother of All Things.

I saw a vision of Durga coming through a veil of mist. She was floating; then, she went back through the veil and came back out on a lion. She said, “This was for you, Roger.” My friend, Wendy, said that I was going to ride out of here on Durga’s lion, and Durga brought me a lion.

She came through the veil from the other side, in starlight, surrounded by starlight. She was surrounded by silver fairy dust all glittery. The starlight comes from One Dove (Antony & the Johnsons), the song in the memorial service. It says:

“One Dove, in starlight you came from the other side
To offer me mercy, mercy, mercy”

She transferred it on to me so that it became my aura. I still have that aura of starlight and silver glittering fairy dust moving up and down around me. She gave to me her aura. The greatest gift she could give me. She gave me her spirit. In One Dove it says:

“From your skin I am born again
I wasn’t born yesterday”

What she is saying, “that now I embody her in my skin, she was born again; she wasn’t born yesterday.” That is what Durga says to me. I embody Durga. That is amazing.

Also Durga is saying as she comes through the veil, that she is old and hurt and that I was old and hurt. She longs to be free and I made her free by embodying her. You were old and hurt that was me being sung to. One Dove continues:

“You were old and hurt
I was longing to be free
I see things you were too tired
That you were too scared to see”

She enabled me to see things that I was too scared to see, and that came out in a nightmare:

I sensed I am in a hellish situation by being trapped in construction sites, and unable to get out. The sites were filled with beautiful young boys with magnificent asses and amazing endowments. These boys were wanting to kill me. I went to have oral sex with one beautiful boy. He had a scalpel sewn into his urethra, so that if I went down on him, I would slice the roof of my mouth open and bleed out.

Bruce, my psychotherapist, helped me see how this nightmare reflected my life. I lived an invisible hell as a junkie and a young adolescent gay boy hating himself so much. God; how I hated myself. I knew it was a secret that had to be kept at all costs.

The construction sites were the construction of my own life which I cannot get away from. I have been constructing a new life coming out of the shame for having AIDS for the past twenty years and coming out of the hell of the active using years for the past ten years. I will be constructing my own life until I am dead. After that I will be constructing a new life in the death plane. That is just amazing to me.

The beautiful young boys were the antithesis of whom l desired sexually. I was attracted to men with hair on their chest. I was never attracted to boys. The boy with the scalpel represented my original shame for having AIDS, a sexually transmitted disease. This boy nearly killed me, but he didn’t. I nearly died in 1995 from herpes encephalitis, my AIDS defining disease, but came awake after ten days in a coma. I was told that I would die before my 50th birthday five months down the line. But I didn’t, I have lived for twenty miraculous years, yes, twenty miraculous years.

I have the most extraordinary dreams; they are actually hallucinations because they are so real to me. They take me places.

In one I went to Augsburg, Austria. I have never been to Augsburg, Austria. I don’t know why anyone would want to go there, but anyway I went there. And I was going to get on this little choo-choo train. I thought the kind that you get at Great America, the tiny little kids’ trains. The kind you get a TV theme park. I realized that I didn’t belong there; but I stayed there riding around. And the train took me to Lucerne, Switzerland so that I could watch the swans. I have been to Lucerne, and it’s very beautiful. You could eat off the sidewalks in Switzerland; it’s such a clean country.

From Lucerne I went to the Netherlands I was going to ask the conductor which city Amsterdam or Rotterdam was the better play city in terms of playing with leather men. As I had been to Amsterdam, I like the city and knew what I would find there from when I lived in London in 1966, my junior year abroad from Oberlin. I took the short ferry boat ride to Amsterdam. It was very leathery for the 1960’s. There were lots of leather bars there; lots of men in leather. I am a leather man myself.

Instead I asked the conductor. “Which city had the better restaurants Amsterdam or Rotterdam?” A friend had lived in Rotterdam for a couple of years. He told me that Rotterdam was the better city. So I went to Rotterdam to eat dinner, and I was sitting in a restaurant. I was eating a lovely piece of steak and I don’t eat steak very much. I had a wonderful biscuit, a baking-powder biscuit, and I don’t like those very much either. And I spread very soft butter all over the biscuit, and I ate the biscuit. It filled me up really well. That is what I did in Rotterdam, and I woke up from that dream and went back to sleep.

I told my friend, Jay Rock, today. He came up to visit from Sarasota, Florida. I told him after three and half years that I am still in love with Jerry, not that I just love him, but that I am in love with him. I have never known such love before. I have never known the secret to that love. It is a very simple secret. I think that one falls in love upon appreciation of the lover’s body and lover’s spirit. I still have that appreciation of Jerry, and I love his body; it is so beautiful. I love his butt; it’s too good. I love his spirit. I love both. When one loves both at the beginning of a relationship and still hold on to that feeling of being in love, something remarkable is happening. He is a very beautiful man, an extraordinary man for me.

I have had an amazing career so filled with brilliant people: brilliant students and brilliant colleagues. Durga has been with me the whole time. I am assuming that she was with me twenty years ago during my herpes encephalitis episode, but I had no knowledge of her then. What medical people told me then in terms of having a short life expectancy may be true now too, but I don’t think so. This is too filled with the death process.

Roger passed peacefully on Friday June 19, 2015.

Epilogue
Roger wrote much and spoke often of our love for each other. This love was from our Higher Powers as we had died to ego and self-will through our 12-step work, although via different programs. This love was confirmed to me by my Higher Power a couple of days before his passing when I had the awesome sensation that I had given him all the love that I was sent to give him in these final years of his life. Rest in the happiness that your were shown my beloved Roger.

Jerry, his partner

Anatomy of an Illness, Part 17

I am exhilarated and filled with an extraordinary peace and joy now that I have made the decision to not do dialysis for my Kidney Disease. Those feelings are deep and profound, and now I can feel my life to be like a glass half full rather than a glass half-empty, which is how I would feel if I were on dialysis. Now I need have no anxiety or worries about the future. I will be living in the natural course of things, not trying to manipulate the natural course of the disease. I can live in the present moment fully, consciously, and with great joy. Most of all I will have a good quality of life for as long as I am meant to be on this plane. When it’s time for my soul to leave my body it will leave and I’m not going to stop its natural process by making my body live longer to keep the body alive, when it is not supposed to be. Undergoing dialysis would somehow be fighting the nature of things. In fact, it would not be prolonging my life, but rather prolonging my death. I’m going to die no matter what, whether I do the dialysis are not. My body is just slowly shutting down, and I am not going to interfere with my natural death process. I would also be giving my life over to dialysis three days a week, four hours each day, extreme fatigue on the off days, psychiatric problems, the possibility of severe infection at the fistula, bone disease, hypotension, severe itching both during and immediately after the dialysis treatment, muscle cramps, and exacerbation of my already existing sleep disorder from both Parkinsonism and the Kidney Disease themselves, as well as the exacerbation of my already existing anemia from just the Kidney Disease. These are just some of the main side effects of dialysis; there are others that are less common.

Today I told Todd, my HIV doctor, that I couldn’t inject Procrit (epogen) for my anemia, because of the terrible side effects and allergic reaction I had to it when I did it during my chemotherapy in the late 1990s. He was completely taken aback by this and said to me extremely frustrated, “well, what should we do now?” He is going to consult with my Nephrologist and they will put their heads together to figure out what to do. It seems to me that they can just do transfusions, which is what happened during my chemo when my body rejected Procrit. I simply can’t afford to go into tachycardia again, which occurred during my first experience with the drug. The ER thought I was I having a heart attack and that my heart would burst because of the rapidity of the heart beat, but they injected me with something, I don’t know what, that slowed my heart rate down to normal, another near-death thwarted. Some of my friends say that I’m indestructible; others say that I have nine lives like a cat. If the latter is true, then I believe I’m in my ninth life. My spiritual journey during this life on this plane is slowly coming to an end, gladly and willingly. I have learned so much from this life of color, of drama, of emotional concentration, my extraordinary life as a musician coming in contact with so many wonderful gifted people who have been put in my path, not just colleagues but students as well. Certainly, I have learned more from living with HIV-AIDS and all the conditions related to it for 32 years than I have from most people. It has taught me the meaning of faith and hope, which is not always hope in life but sometimes hope in death.

My life has been remarkable, a great gift, even when I thought I was living in the circles of Hell from Dante’s Inferno as an active drug addict. I learned so much spiritually about myself growing up with such a rabid self-hatred because of my homosexuality. My internalized homophobia was so terribly toxic, but it helped make me the Queerman I am today; I had to learn to survive. So did my life at Oberlin College where I came out with a powerful self-love and self-confidence as a Queerman because of my work with my first psychotherapist who was brilliant and was a devout follower of the work of Evelyn Hooker. He was the only psychotherapist there who did believe in her work. He taught me that being Gay was not only perfectly normal, it was majickal and that I had certain gifts that he, as a straight man, would never have. I know now that this was the work of my Higher Power taking care of me from the time I was born, through all the sexual, physical, and spiritual abuse I experienced as a child/adolescent, through my years of graduate school for music and theology. Through my career as a teacher and international concert harpsichordist and finally through HIV-AIDS and all its opportunistic year infections and near-death, which, after many years of being relatively quiet after the year 2000 through 2008, has reared its head again, She was with me. She is with me now through these final stages of my Chronic Kidney Disease and Parkinsonism, as well as my Peripheral Neuropathy in my hands and feet. It was my years at Oberlin that were the beginning of my conscious spiritual journey. That time in a small college town in Ohio was fecund and fertile ground for the beginning of the exploration, which, over the course of the next two decades, took me onto the paths of Buddhism, Christianity, Taoism, Hinduism and the sexual mysticism of the latter two. Though born a Jew, I threw that religion away when I came out, because I associated it with the monstrous childhood and adolescence that I had, and extended family that smothered me and solidified my internalized homophobia (incessant questions about whether I have a girlfriend or not, and what a wonderful mitzva it will be when I give the family grandchildren). Now, after nearly 42 years as an active drug addict, my spirituality has solidified through a 12-step Recovery program, Crystal Meth Anonymous (CMA). I have come to know serenity, peace, and unconditional love both from my recovery family and from my beloved partner, Jerry. It is as the embodiment of my Higher Power, from the voices of those who love me and want what is only best for me, that I have been able to make my decision for no medical intervention; I have the program and the Fellowship that the program gives me. My Higher Power, Ma Durga, has been with me from the very beginning of my life and She is laughing and dancing with joy at my decision. She has taught me the meaning of gratitude and humility, of unconditional love and true friendship. I thought I knew how to love myself since my psychotherapy sessions back in Oberlin and subsequent therapists on and off during the following years of my life. But, She has given me a sense of myself and unconditional love for myself and my place in the cosmic order, such as I’ve never known before. And isn’t it true that, as the great super star drag queen Ru Paul says to the world, “If you can’t love yourself, how in the hell can you love somebody else? Can I get an ‘amen’?”

It wasn’t until I entered Recovery nearly 10 years ago that I finally came to understand the true meaning of unconditional love for myself and therefore unconditional love for others. Indeed, my life has been blessed from the very beginning and how can such blessing not teach me gratitude and humility? How can such blessing by the Mother, who is divine Unconditional Love, not make feel gratitude? Without this unconditional love, which, I admit, I feel more strongly on some days than others, depending upon the state of my health, I would not have been able to reach my decision regarding no medical intervention for my Parkinsonism, my Chronic Kidney Disease (moving quite rapidly in the last two months), and for my Peripheral Neuropathy, which is crippling on some days and nights. She showers me abundantly with Her exquisite beauty, compassion, and wisdom I gratefully received during the two months prior to my decision, when I sought the powerful guidance of Her wisdom through the wise and recovered voices of my deeply loving Recovery Family and the voice of my psychotherapist. And, the most powerful voice of wisdom that I have in my life, my beloved Jerry, my spouse, my companion, my lover, my teacher, my best friend and between that wisdom and my highly developed intuition I knew I reached the right decision. There is no anxiety. There is no fear. There’s only excitement over what I will experience as the disease progresses, as I experience process of death with full consciousness and no fear. I feel so self-determined now, and do not feel as if I’m taking the “advice” of anyone who seems to have my answers for me. When I meet someone like that I usually run in the opposite direction, “because those who know don’t speak, and those who speak don’t know.” I have made my decision through the quiet the voices of my Recovery Family, my psychotherapist, my brother, and of course through Jerry, whose wisdom knows no bounds. He keeps me so centered on days when I don’t feel well. We talk about acceptance and surrender and how those two things can make my sick days feel so much less oppressive and painful. By admitting my powerlessness over my illnesses, I am 1000 times more powerful than before the admission. It is a self-empowerment. Powerlessness breeds power, the power to live with integrity, honesty, and to live spiritually in good and right relationship with my fellow beings, with myself, with my Higher Power, and with all of Creation. “Can I get an amen?”

Jai Ma!!

My serenity and peace: The Sacred Lotus

lotus_flower

Anatomy of an Illness, Part 16 (12-step Recovery and Death)

I have made a clear and final decision that I am not going to go through dialysis nor will I be injected with Epogen every day to raise my red blood cells and hemoglobin because of anemia.. This last is for a number of reasons. First, however, I have to say that I am just going to let the Chronic Kidney Disease be and finally let it take me “home” back to the Source, to the Mother. I will not go through “dialysis sickness” (sepsis, invasive staphylococcus infection, nausea and vomiting), cognitive changes, debilitating fatigue, bone and joint pain, overall stress and anxiety, severely itchy skin, muscle cramps, insomnia, low blood pressure (which I already have and the dialysis will only make it worse) and giving my life over to a procedure I really don’t want, two hours a day, three days a week with an hour commute each way to the dialysis center and back for the next number of years. My life will become centered around my dialysis with little room for anything else except necessary doctors appointments. To my mind, that is not a life, at least not a life with any quality to it.   For me, it is no way to live. I am going to die from the disease even with the dialysis, although it will take much longer with it than without it. I don’t want to prolong my death. I am told that dialysis will prolong my life, but at what cost? As far as I can tell, It is really prolonging my death and I have no desire for that. I also can’t have a kidney transplant because of my HIV. My immune system is already far too suppressed and compromised for me to be able to take the immune suppressing medication for a transplant, and without the dialysis or the transplant, my CKD is terminal. I also cannot stand the side effects of Epogen. When I injected it during chemotherapy, also because of anemia but from the chemo, I swelled up like a balloon even worse than that caused by my Kaposi’s Sarcoma. I had severe bone pain and shortness of breath as well as a rash, which started about two weeks after I began the Epogen. I also went into tachycardia and the doctors thought I was going to have a heart attack, but they injected me with something to slow the heart rate down to normal and it worked. The lower back pain from the Epogen was excruciating. I was finally taken off the medication and had to have two transfusions during the course of my chemo. I will ask my doctor if I can be transfused, because the Epogen is out of the question.

I also will not inject myself with Epogen to counteract the anemia I have from the CKD, because I am a drug addict in Recovery. I will not inject myself with anything because of my drug addiction. The injections and the handling of a syringe can only trigger my desire to use, and my sobriety is the most important thing in my life. I have been clean from all drugs for 9.5 years and I will not jeopardize that now. I don’t really think I would use, but I don’t even want to have euphoric recall, which is a dangerous trigger.

I have not made these decisions lightly or out of any kind of suicidal ideation. I am NOT committing suicide. I am neither depressed nor despondent. I am merely choosing in what way I want to die, in peace, pain free (hospice care), with a great deal of serenity and grace. I may not die for a few years or maybe a few months. I don’t know how long one can last with CKD and no dialysis nor transplant. My therapist, whom I greatly love and with whom I have worked on and off the past 10 years, says such a decision is thoroughly in keeping with how I have lived my entire life. That is, that I lived life on my own terms, no one else’s. He says that it beautifully reflects my fundamental personality and spirituality. Now, since recovery, I live my life on life’s terms, and the decision regarding my death is, indeed, living life on life’s terms. I want to die with my loved ones around my deathbed, especially my brother, my therapist, my recovery family, and, of course, Jerry. I expect that I will be in a great deal of pain prior to the hospice admission because of the failed kidneys, but that is just something I have to accept and to which I will surrender with the help of pain medication. I have been pondering this for many months and have felt that I was carrying an enormously heavy load on my shoulders. Since the decision to not have dialysis, and not to use Epogen, I feel light and peaceful. After a long discernment process through conversations and my powerful intuition (I am an NF on the Meyers-Briggs), I know what my Higher Power wants for me, so I know that I will be taken care of as I need to be. This is a large part of my spiritual journey with AIDS over the past 19 years. It is the culmination of a most ecstatic spiritual life, filled with blessing and joy, tragedy, grief, and loss, but always never more than I could handle and always with Light coming out of the Darkness. In the end there has always been Light.

I have had a remarkable life filled with people and experiences that have deeply changed me for the better, even the childhood abuse helped make me the man I am today. Every one of my experiences has molded me into being that man. Every experience I have had, including my walk with AIDS and all the opportunistic infections, which nearly killed me during the AIDS genocide of the 1980’s and 90’s, helped me become the man I am today. I can honestly say that I have absolutely no regrets.

I  suffered with intense illness for 7 years from 1995 to 2002. Quite literally, half of that time, 3.5 years on and off, was spent at what is now Advocate Illinois Masonic Medical Center (back then Advocate didn’t own the hospital…. it was just Illinois Masonic Medical Center). I was in the ER there countless times and always admitted to the AIDS Unit, which was a place of love and living life as best we could with a remarkable and loving nursing staff along with equally loving CNA’s. Although 7-10 Queermen died in the Unit every day for so many years, there was still an aura of life there. I ministered to the men and had them as spiritual direction clients when they were not being hospitalized during the 80’s and the first half of the 90’s, until I got sick in 1995 with HSV Encephalitis. It put me into a coma on Christmas Eve, 1995 from which I awoke on January 4, 1996. That trauma to my brain is what has caused my Parkinsonism, which often kicks in years after a brain trauma. During my time as a Spiritual Director and Chaplain, however, before I got sick, I was blessed to hold my dying brothers in my arms as they took their last breaths, kissed them on their lips and their foreheads with the kiss of peace and talked quietly and gently to them to help them die as comfortably as possible, which was not always possible at all. The opportunistic infections were truly horrible, and often the patient died in agony. My own supervisor died an agonizing death, filled with pain and torture. That was not uncommon, but often death was peaceful and quiet with little death drama. Sometimes after months of excruciating pain, death was a welcome guest and the deaths had a serenity to them that changed me forever. Perhaps that’s why I want to decide my own walk with death. I want to die with dignity and peace, serenity and grace. I expect I will be doped up on a morphine drip, but I hope to remain lucid to the very end.

I feel such peace now that I have made my decision to let the CKD take its natural course and not intervene in any way.   I wrestled with this question for so many months, shedding copious tears over it, afraid to accept and surrender, to let go of my attempt to control the disease. I have so many things wrong with me physically, and everything is interconnected to everything else, and the basis of it all, the CKD, the Parkinsonism, the crippling Neuropathy in my feet and now in my hands, and the anemia are all founded on HIV. I am a living example of what can happen after living with HIV for 32 years. I am from the first wave of those infected, and the medical world had no idea what to expect from us “old” survivors who had opportunistic infections and who had T-cells in the single digits (I had as little as 4 T-cells when I got sick). People like me and my dear friend Steve, as well as countless others, are examples for the medical profession of what can happen after living with the virus for 30 years or more. They are learning a great deal about it from those of us who have survived opportunistic infections (OI’s). There are people who have survived HIV for all that time and have remained symptom free with no OI’s at all. None of those HIV survivors are suffering with the conditions that those of us who had OI’s are having now, at least none that I know of in Chicago. They continue to remain free of symptoms of any kind. Praise be!!

I was really worried about what would happen to Jerry should he outlive me, which is quite likely. He will have to move to a studio apartment, perhaps here in the same building if they have one. He won’t be able to afford this apartment on his own. A great deal of his income is from him being my official Personal Assistant in a state run program (DRS) from which he gets paid for a certain number of hours taking care of me each week. He assures me again and again that he trusts his Higher Power completely and that he will be fine. He has more trust and faith in his Higher Power than anyone else I know in Recovery. Jerry is a great example for me of how I also need to trust unconditionally, as he does. He is so supportive of my decision to decide how I want to die. He says that he is to walk beside me on my journey through this and support me in whatever decision I make, and that he cannot and will not try to control me nor try to keep me on this plane for longer than I am supposed to be here. He is a most extraordinary and deeply loving man who takes care of me and tries to meet my every need with no resentment or anger at all. He says that he is only doing what a partner who deeply loves is supposed to do. He says that his Higher Power directed him to this relationship, in order that he has spiritual awakenings from the experience of being my caretaker and learning to feel his feelings rather than self-medicate with his particular addiction. Jerry is also in recovery. He has been sober for 23 years. He says that my decision to die with dignity and perhaps have to fight for it with my physicians is also part of my own spiritual growth. I believe that’s true. I am working the 3rd and 11th Steps of the 12-Steps of recovery very intensely.

     Made a decision to turn our will and our lives over to the care of a God of our understanding (3rd)

    …..praying only for the knowledge of God’s will for us and the power to carry that out. (11th)

 

After much discernment over many months by talking with people I trust spiritually, I heard the will of my Higher Power through their voices of insight, compassion, and love, and it is that I make this decision concerning my own death. As I wrote in “Anatomy of an Illness, Part 15”, I will be living out the Serenity Prayer of Recovery fully as I walk this path. I know that I will be “going home” to the Mother, and I have no fear of that.

God, grant me the serenity to accept the things I cannot change.

                        the courage to change the things I can,

                        and the wisdom to know the difference

 

I cannot change the fact of my CKD, but I can change the way I die from it, so right up to the very end of my life I will be working my Recovery program. I am content and very happy with my life now that I have made the decision. I will end my life clean and sober, deeply loved by many and loving them right back in return, because my Recovery program and my relationship with Jerry has taught me mutual unconditional love for others, and for that I am thoroughly blessed. In the fullness of time, may my life continue to grow spiritually and may I learn even more compassion through this process as I have learned it throughout my life, but especially since entering Recovery. My decision is made because of compassion for myself, which is yet another big thing I had to learn in Recovery. Prior to Recovery, I had no compassion for myself, only for others, and that was a major “character defect” as defined by the Recovery program. Again, I am living out my program, working the 6th and 7th Steps, humbly asking the Mother to remove all my defects of character and my shortcomings (my self-hatred and feelings of unworthiness).

Were entirely ready to have God remove all these defects of character (Step 6)

            Humbly asked God to remove [my] shortcomings (Step 7)

She is doing it now as I made my decision to take care of myself and not try to please others at my own expense. That includes my doctors who will, no doubt, balk at my decision. I cannot try to please them, however much they pressure me to do dialysis and to inject Epogen. I will not pay the high physical, emotional, and spiritual price necessary to please them and have them continue to love me. I may lose them completely, but I will stand my ground and be true to myself. The most important part of the 12 Steps comes at the end of the 12th Step itself “practicing these principles in all [my] affairs”. That includes deciding how I want to die. As I walk my Recovery path, it is clear that this discernment process is part of my Recovery, clear and simple. It is all about my spiritual growth and becoming even more than I am now as I ponder the really important questions about life and death and engage those questions fully as I live my life  I have had a powerful “spiritual awakening as a result of these Steps” (Step 12), and for that I am eternally grateful to my Higher Power (the Mother—Ma Durga) for leading me down the path of Recovery so that I can end my life with peace and dignity, knowing that I have done all the work I have been given to do in the world, humbly creating transformation in thousands of people through my performing and teaching, my practice as a Spiritual Director, my writing (I published my book Thoughts of a Tribal Elder in 2010), my blog “queerwitness” and my love for Jerry which has greatly transformed him as well. It has equally transformed me. I have learned powerful lessons in receiving unconditional love with no fear or guilt, no shame, and finally to receive it graciously in the autumn of my life. As a child, I had to pay an enormous emotional/psychological price in order to get a semblance of love from my parents. I grew up thinking that I was neither loveable nor worthy of my parents’ love. Through Recovery, I have learned that I deserve to be loved and also that I love myself. That’s an incredible thing. But, I’m tired now after 19 years of living with AIDS, and am ready now to “go home” and rest for eternity in the all-embracing arms of the Mother and Her love for me. My life is complete and I am ready to walk this final part of my path however long or short the process will be. This is really a great adventure in self-care, healing of old emotional wounds, and learning self-love so that I can receive Jerry’s love fully and revel in it. Truly this is miraculous and is a gift of the Program. I am filled with gratitude tonight for a powerful life well lived. Thank you, Ma. You have been with me from before I was born, when you were naming the stars in the heavens, and I am blessed to be so loved.

Jai Ma!!

Anatomy of an Illness, Part 15

This is Friday morning September 26 exactly 3:00 AM and I feel really awful. I have chills but when I put on my bathrobe, I begin to sweat and my body pain is really terrible. I have small electric shocks that go through my brain, which I can hear in my inner ear. It has been happening since I came out of my coma in 1996 er with severe brain damage from the trauma of the HSV Encephalyhtis, but they have gotten so much worse in the past few months. Sometimes, they are so intense, that I feel as if I’m going to pass out from the shocks. I’m hoping that my new neurologist whom I will be seeing for the first time on October 27 is as good as her credentials say she is. I saw one neurologist for nearly 10 years and we were very close. He diagnosed my Parkinsonism (Secondary Parkinsonism, to be exact)10 years ago. Dr. Bartt moved to Denver and I had to find a new neurologist. Dr. Bartt (Russell –with their permission, I call all my doctors by the first names) told me my best bet was to see one of his finest residents and that she would take great care of me. I saw her for the two years of her residency, but now she is finished and has gone on to become a fellow at the University of Chicago Hospitals, and I will have to see another resident for the next two years, and then the next two years after that with yet another resident. I really don’t want to have to keep changing neurologists every two years, and have a different Attending Physician every time I see the resident. My Parkinsonism has escalated incredibly rapidly. I need a neurologist with whom I can have a long-term relationship, one who will be there for me, and who knows my entire history, and with whom I can work for a very long time.

I’m going to Northwestern Memorial Hospital’s neurology department. I will be seeing the director of the department who works with Parkinson’s, Parkinsonism, sleep disorders, and movement disorders. I liked her credentials very much, and thought that if she’s the director of the department she must be good. She’s also a full professor on the faculty at University Hospital. Her credentials are rather impeccable. When I was looking around for a neurologist at Northwestern (NMH), I looked at the specialty of each neurologist on staff and thought that if she were the director of the program, she must be good, but I never thought to get an appointment with her. When I called to make an appointment, however, I was told that she was indeed taking new patients but couldn’t see me until October 27. I made the appointment immediately. My Parkinsonism is quite bad, but I’m going to live with it until I get to see her in late October. I’m only on two medications Sinemet and Amantadine, those being the two medications recommended to me by the resident, but the first one does nothing and I don’t know what the second one is supposed to do. When I looked at the paperwork regarding my medical history and medications in order to be ready for my first appointment with Dr. Simuni, I noticed when I filled out the intake sheets that one of them talked about what medications are available for Parkinsonism. Why I wasn’t given some of those medications, I have no idea, except that the resident that I had, who was really quite wonderful, never mentioned them to me, so as far as I knew I was left with only those two medications. She said she didn’t want to add any more because I take approximately 15 medications twice a day, sometimes with two tablets per dose. It’s a shit load of meds, but they keep me alive and they keep me quite sane (I take lots of psych meds to counter the psychological effects of full-blown AIDS including generalized anxiety disorder, generalized depression and on top of that I am bipolar). Between all my meds that are taken at specific times and the ones that I take as needed, she didn’t want to add more medications to my med list, because I’m a walking pharmacy.

Along with the 225 µg of Fentanyl, I use marijuana in various forms (hard candy with a very high CBD count and chocolate fudge with a high THC count) to counteract the pain throughout my body and particularly from the neuropathy in my feet, which has now gone into my hands probably because of the CKD, which, in late Stage 4 begins in the hands. I know that it is not HIV neuropathy because I have been living with it in my feet since 1991. There is no reason that it should suddenly appear in my hands after 23 years in 2014, unless it is because I have gone heavily into Stage 4, which, by itself, produces neuropathy of the hands. If my readers are wondering how I am typing this with terrible neuropathy in my fingers, which makes them both numb and painful, you should know that I cannot type anymore at all. The pain in my fingers is severe and I can’t feel the keys. I misspell words now constantly because my fingers slip off the keys where sometimes I even type between two keys and sometimes I don’t even know where the keys are anymore at all because I get so confused. I used to type 150 words per minute. Now I’m lucky if I can type 5 WPM so, I use Dragon for Mac, which allows me to speak my text and it automatically types what I say.

I am going to Physical Therapy tomorrow for the last session. I am graduating. My PT, Greg, was remarkable and healed my torn left rotator cuff in about 8 weeks. It took 5.5 months of Physical Therapy a year ago from a fall I had on the sidewalk to repair my right rotator cuff. This time for the left it only took two months for the rotator cuff to heal. I will not need surgery, which is a great blessing. My therapist is wonderful, not only in his knowledge about the use of machines for strengthening the muscles (my deltoids were locked up and incredibly weak), but also in manual massage work and traction that has loosened up my joint to the point of being able to raise my arm now over my head with no pain and lift a gallon of milk pain free as well, whereas before PT I could only lift my arm about 5 inches away from my body, was not able to shower by myself, could not even lift a glass beer mug filled with iced tea. The sessions are exhausting but also exhilarating. My shoulder is very tired after the session as is my entire body generally, but I feel so alive afterward that the exhaustion and pain from the workout don’t bother me at all. I can see tremendous progress, and that’s very encouraging. I usually sleep for the entire rest of the day on PT days and often throughout the day following. The exhaustion is debilitating. I worked really hard in PT, and I am very proud of my progress, as is my therapist and the other therapists in the practice, all of whom were in aw e   regarding my progress and hhealing is such a relatively short amount of time.

My Hoveround power wheelchair arrived approximately 6 weeks ago. It’s more difficult to learn to drive than a car. I feel like I’m 16 years old with a learner’s permit, except I’m 68 and have no learners permit. I feel as if I should wear a sign that says, “Student driver–beware”. I can take it out onto the streets quite easily, but getting it through doorways and around tight corners is nearly impossible and I have to practice it a great deal. The elevators are particularly difficult, because the elevator doors don’t stay open very long when you get on the elevator. They close within about a minute and a half after arriving at the floor, and right now it takes me about 5 to 6 minutes to get into the elevator as well as to get out of it because I have to go out backwards, and I am having a terribly difficult time doing that. Someone has to come with me into the elevator in order to hold the “door open” button both when getting on and getting off the elevator. Because the elevator is so small, navigating it is very tricky, but I intend to master it no matter how long it takes. I have not had the nerve to t ry public transportation yet. The spaces is small fort the chair and there is a ramp to get into the bus, and I am afraid that I will driva off the ramp, because I won’t be able to keep the chair in a straight line. We’re going out on the street with the chair this afternoon, my brother, Jerry, and myself, to take the chair into the park and the three of us will have a lovely walk outside together in the warmth of an early September Saturday. My most wonderful Primary Care Physician, Todd, suggested that because of my history in the Queer community, and because I was present at the Stonewall Rebellion and because I have outlived my death prediction by 19 years, I should call my chair “Stonewall”. For me, it is a powerfully strong word and embodies struggle and victory, which is exactly what is happening to me now. I was thinking of blinging it out with a Bedazzle kit and cutting strips of black leather to hang from the arms of the chair. It’s all very funny, I suppose, but it’s not something I will do.

The chair is enormous. I’ve never seen one this big anywhere on the streets at all except another Hoveround. Most power wheelchairs are much smaller and lower to the ground. Mine, however, looks like a dentists chair, according to my brother. The wheelbase is quite large, and the wheels are large enough that they require fenders over each wheel in order to protect them from damage. I was out with the chair a week ago, with my dear friend John Lee, and we went to the park together, sitting under a tree while he rested and I took a nap in my chair. The back of the chair reclines and is almost flat, and with the wonderful headrest l dozed off in the chair under a tree by the water of Lake Michigan.

I saw my Nephrologist last week, and he said that my creatinine level has increased by a whole point, which takes me out of the low end of Stage 4. I am right smack dab in the upper middle range of it on my way to Stage 5, at which time my doctor will probably want to put me on dialysis. This raises a whole set of important questions that I must ask myself regarding longevity and its relation to quality of life. I was on and off chemotherapy for 3 years from 1997-2000 for Kaposi’s Sarcoma (KS) One of the chemo agents was so toxic it landed me in the ICU for 2 weeks dying. Of course I pulled through that terrible chemo sickness, but I remained in generalized chemo sickness throughout the three years each time I had a cycle. I never want to have that happen again. I also had radiation therapy on my upper right eyelid to remove a KS lesion, and the radiation oncologist missed his mark, hitting instead my lower lid scarring it permanently for life. My Ophthalmologist says that my lower lid looks like the Grand Canyon. It ruined my tear ducts and my eye is constantly dry requiring preservative-free eye drops almost every hour. Because of the dryness, I am prone to infections which I get about every 2 months or so. Until recently, for the past many years it felt as if I had a large foreign object in my eye scratching the cornea. My Canyonesque lower lid was doing the scratching which was quite severe and required corticosteroids to reduce the inflammation. It was quite painful, but I have discovered that Arithromycin Ointment in my eye every other night prophylaxes against infection and removes the sensation of the foreign object. I have had a terrible time with invasive procedures such as chemo and radiation, and, quite frankly, I don’t want anything like that again. Deciding whether or not to do dialysis is a huge decision, and one that cannot be made in a vacuum. It can only be made in conversation with people whom I trust to have my best interests at heart and who would respect whatever decision I make no matter how uncomfortable it may make them. My brother, Len, who I love dearly and respect completely is one of those people.. I’ll also talk with some of the men in my Thursday night CMA home meeting. These are the men who came to take care of me while Jerry was away in California at the WA conference. A different one of the men came for every 24 hours until Jerry came home. They took care of me and just spent time with me with love abundant. They are my family. Because my decision is based largely on theology and my spirituality it is important that I speak with my former Spiritual Director of 23 years. He is a man of great wisdom and spiritual insight, an Episcopal priest and former Benedictine monk, who is Gay and approximately my age. He and I worked together as spiritual caregivers during the AIDS genocide of the 1980s and 90s. I trust Brian completely to really hear what I have to say regarding my decision around longevity and what price I would have to pay in order to live longer. He will be a great help to me. It is through these conversations, through my own intuition, through my writing and daily meditation readings, etc. that I can always hear the voice of my Higher Power. My 12-Step program has taught me to thoroughly trust my Higher Power to speak to me so that I know what the next right thing to do is. The Mother has always taken care of me, as I have said again and again in this series of essays. She is not going to fail me now when I need Her the most. Ma Durga, my Higher Power, has always taken care of me ever since I was born. She was with me through all the childhood abuse, through all the pain of my internalized homophobia and self-hatred as a child and adolescent. She was with me during my great Coming Out in 1965, when I knew that in fact I am lovable and that I had learned to love myself for the first time in my life. She has been with me throughout my career (including my sexual career) and the entire time I’ve been living with HIV/AIDS. She has never let me down, so I completely trust that She will be with me as I make my important decisions regarding life and death, and I must listen to her voice through the people whom I love and who love me.

I am completely clear in my mind about making these decisions. This is NOT suicidal ideation by any means. I am not depressed, nor am I despondent. I am quite happy and thoroughly content with my life. I am simply choosing how I wish to die with dignity, in my own time, and on my own terms. I am going to die from the CKD no matter what. I cannot have a kidney transplant, because my body will not tolerate the immune suppressing drugs in order to keep my body from rejecting the new kidney. I am already too immune compromised and suppressed, and the medications will kill me. If I don’t have the transplant, the CKD will kill me. Dialysis is merely prolonging the dying process, and I don’t see any reason to do that. One way or the other I am going to die from the CKD. Another reason, which is a big one, that I want to let the disease take its natural course, is that Jerry is 75 and it is possible that chronologically he could die before me if I were to use treatment measures for the CKD. Should that happen, I would end up in a state-run nursing home with nothing of my own, except some clothing. No cats to love and be loved by. No friends with other Queermen. No caretaker who loves me. I can easily suffer extreme bodily harm from orderlies who rape, beat, neglect, and generally abuse senior Gaymen under their care. This is documented in study after study, and I would, indeed, rather die than suffer such torment, abuse, and physical danger as I live out my life in a blatantly hostile environment. My therapist agrees with me completely. I simply cannot allow that possibility to happen. Although I still have more people with whom to talk, such as my former Spiritual Director, my family, my care team, and people already on dialysis, I have fairly well made up my mind that this is the course of action I intend to follow. As my therapist says, I am not here to please anyone or make them feel better, but, rather, I am here to please myself and make my own decisions regarding how I want to live and how I want to die hoping that my loved ones will respect and honor my wishes without rancor or any negativity and not be selfish trying to keep me here as long as possible, no matter what the cost.. I have asked my therapist, whom I have been with for nearly 10 years and whom I love very much, to be with me at my deathbed along with those whom I love and who love me, in order to ease my passing and allow me to die in peace and with some semblance of serenity. I cannot change the Chronic Kidney Disease, but I can change the way it ends my life. This is how I wish to live out the Serenity Prayer from 12-Step recovery. “God…..grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” I will be working my Recovery Program right up until I take my last breath, trusting the Mother to take me home in peace. This is my final wish, to end my life with dignity, grace, and with blessing, held in Ma’s hands, going back to the Source. Coming home!!

Jai Ma!

Jerry and Roger

Jerry and Roger

Anatomy of an Illness, Part 14

The only reason I would not like to die for many years is that it would be taking me away from my old man. I want as much time with Jerry as I can possibly have. I love him in everything that he is. He has become my spiritual teacher and he’s teaching me perhaps the most important thing any human being can learn in life. I’m learning how to receive love from him in healthy and unconditional ways, as well as learning how to give love back in the same two ways. I am learning this also from my CMA recovery family. The remarkable men in my home recovery group, which actually meets in my home, will do anything they can to see to my well being. Jerry is away at a conference, even though he was afraid to leave me alone, because I fall so easily and I have a very strict medication schedule. What allowed him to go was that there were men staying with me overnight every night and during the day each day. Not since my Queer family, all of who were slaughtered in the AIDS genocide of the 1980’s and 90’s, have I ever known such love and commitment from friends. I love my CMA men completely in all ways and always. All my previous long-term relationships have taught me a myriad of things, all of them important to my spiritual growth.

Sometimes that spiritual growth was in the Light and sometimes it was in the Darkness, but all the things I have learned are important on my journey through life and for my spiritual growth, which grows deeper and more profound as I walk each day in sobriety with all my illnesses and challenges, receiving an abundance of Love which ultimately comes through the grace of the Mother. Each of those relationships was a practice run for this relationship with Jerry, the final relationship of my life. I need him. I need his love and respect and compassion. I need him now especially with my disability. If Jerry were not around I would be totally helpless, because I cannot stand for very long because of the tremors in my legs and the chronic lower back pain, which means I can’t cook for myself, and I certainly can’t go out to get groceries, because of the weakness of and tremors, first in my legs and then my entire body starts to shake. I can’t even wash dishes from just one meal and keep my balance at the sink. I do keep my balance when I use my roller walker.

After falling three times on my left shoulder and knee, the consequent pain in my shoulder is quite severe. I tore the left rotator cuff. I tore the right rotator cuff after the first of two falls out in the street nearly eight or nine months ago. All of the other falls have been since mid May and today is just the beginning of August. Fortunately, because I’m not married to Jerry (we don’t feel a need for that kind of validation and we have taken care of all necessary legal matters regarding my health care and his), he can be in a state program as my Personal Assistant (PA) that pays him for all his hours of work taking care of me, and that along with my very small Social Security and rent subsidy from the AIDS Foundation of Chicago (AFC), we have a very workable income now because of that. Without Jerry’s PA wages we would never be able to afford this one bedroom apartment that we have in Lincoln Park. I especially need to be in this apartment because it is handicap accessible and cannot be anywhere else such as a nursing home, which for me would be lethal. There have been too many questionable deaths of senior Gaymen from sexual and physical abuse and neglect in state-run nursing homes for me to ever trust one. Rape is rampant. I plan on dying in my own home if at all possible with Jerry by my bedside.

I now wear a digital medical alert bracelet with four gigs of memory for my meds, my doctors’ phone numbers, my hospitalizations, my surgeries, my DNR, my Power of Attorney for healthcare, my allergies to medications, my emergency phone numbers (Jerry’s is the first), and any other information pertaining to my health care including a complete family history of various illnesses. I am also paying for a Medical Alert Phone System that works through my cell phone so that if I fall and cannot get up I just press the button on my pendant that hangs around my neck and it activates alarm banks at Bay Medical Alert. Both the system and the medical alert flash drive that is on my right wrist give me just enough of the safety net that most of my anxiety is fairly well alleviated.

The worst part is that I have been very anxious lately regarding my safety in my apartment, especially if I fall and break a bone or my hip. I have fallen seven times since May, three outside in the street and four in my apartment. Except for the first fall in which I tore my right shoulder rotator cuff that required five months of good physical therapy both in the PT gym and at home. From that PT my right arm has full range of motion. My left, however, cannot be lifted at all if I am lying down and only slightly when I am up and around. Not five minutes ago I fell again, this time in the kitchen getting some blackberries for breakfast. In order for me to not hit the floor, I grabbed onto one of the countertops with my right hand putting all my body weight on my left shoulder against the refrigerator and just exacerbated the tear as I pushed myself up with my legs. It is terribly painful. I’ve gotten an order for physical therapy from my wonderful physician, Todd, and it will be specifically for a tear of the left rotator cuff. I had my first PT session today after the initial evaluation, and the therapist said it would heal with lots of work on my part.

This past weekend Jerry is out of town at a conference in Malibu, California (he needs the respite care very much), and I have men from my Thursday night home CMA group staying with me throughout most of the day and all of each night that Jerry is gone. Right now one of those men is asleep in our bed. I am sleeping on the sofa in living room on which I often fall asleep during the night after waking at 2:30 AM.

It’s 3:00 AM and I’m up until about 7:00 when I will take the first nap of three or four that I will take today, as I do every day. The PT said there is nothing he can do for my weakness and fatigue in my legs because of the Parkinsonism, which atrophies the muscles in my legs, and I am in great pain when I walk. My entire body feels as if it is being stretched on a medieval rack that was used to torture people, especially heretics and political prisoners. Men who love men and women who love women and were powerful in themselves as women and who loved the Earth and the Mother, and didn’t need the men of the church to tell them what to do. Consequently, because they were powerfully self-aware women and had a spirituality that was utterly woman-based, and Earthbound, and because they were a threat to the power of the church, they were labeled as witches and either burned it the stake or ducked or tortured until she/he confessed, at which time they were burned anyway, but now with having “confessed her/his sins”. The rack was used to extract their confessions.

To alleviate the rack-like pain, I have taken a dose of 30 mgs of Hydrocodone and I have the 225 mcg of Fentanyl plastered on my body and nothing is helping. Something has happened to my body that is so fucking scary. The Parkinsonism has progressed in one month to what should have taken years to develop. My hand and quads have such severe tremors and weakness from the atrophy and the misfiring of my brain from lack of Dopamine and the neuropathy in my feet, that I could not walk more than 50 feet yesterday because I could not even hold on to the walker before Jerry had to turn my roller walker into a transportation chair to get to the bus stop. The bus stop is one very long block from my apartment. It is the corner on which my HIV/AIDS doctor, as well as do all my other doctors, have their offices: my Cardiologist, my Nephrologist, my Podiatrist, my Orthopedist, my Retina specialist, my Ophthalmologist, and my Neurologist. They are all associated with the hospital in which I have already spent far too much time. I expect that I will spend a great deal of time there in the near future. It is not something I look forward to. Perhaps that will be fairly soon or that will be months away. What I know tonight and through this whole past year is that my body is shutting down slowly. But, after this week and especially because of what happened today, I know that my health is finally getting down to the wire.

This all has me thinking about death a great deal. I talked with my therapist last week and said that if I die tomorrow I will die utterly content and happy with a full, dramatic and rich life, rich with experiences and relationships of all kinds of people from the strangers in my audiences, to my students, to my dear friends. And then, there were the strangers at the the baths in Chicago (Man’s Country) in the 70s and the bathhouse (St. Mark’s Baths) and the Hudson River piers, burned out and rusty, where sex was a 24-hour matter of fact, and constant evenings spent in back room bars and sex clubs in New York in the early 80s where my sexual career flourished. And then AIDS hit the community, and our culture of sexual liberation for which we had fought so hard at Stonewall in 1969 and in the ensuing years of the ‘70s, started to shred. There was sex everywhere, and we were dying while playing in our playgrounds. And, all the men I fucked with in New York in the early 80s, all those strange men, every one of whom exchanged names and phone numbers with me, are with me still and I grieve their loss terribly. With some of them I became fast friends. In Chicago, beginning in 1984, I became a part my beloved family of seven Queermen who became my closest companions and lovers. We were inseparables and all died and left me here to get deathly sick, but live in order to “carry the message of recovery” (Big Book of AA) to all Queer drug addicts, especially Crystal Meth addicts, and to do my transformational work of performing, teaching, and doing Spiritual Direction.

Then after nearly fifty years of licentious sex, I took a long break from my sexual career to focus on my vocation as a concert harpsichordist, a teacher (teaching is my true vocation which has taken various forms throughout my life, from age 11 when I gave my first full piano recitals), and spiritual director. Because of the presence of AIDS, in 1983 I started having safer sex when I moved back to Chicago. All of this and three abusive relationships, the last being 13 years long, and then being in 12-Step recovery from drug addiction for nearly seven years, I met Jerry in 2011, whom I could not have met and for whom I would not have been ready if I had not experienced all the challenges, obstacles, losses, joys and celebrations and recovery, being clean and sober from all drugs for nine and a half years, I probably would died from an overdose of Crystal Meth. The rest of the story is written up until this blog.

My relationship with Jerry was written ages ago in the Book of Karma, but neither of us was ready until three years ago. When I saw Jerry for the first time when we met at Starbucks, after a number of months of correspondence, I thought, “there you are, my dear. I have been waiting for you to come into my life again. I found you at last”. I knew who he was instantly without even asking if he was Jerry. It is fitting that it comes near the end of my life whenever that will be, and that we have this time together. I want years of life with him. But that is not up to me, and I have no control over it. It is up to the Mother, to Ma Durga. Our souls had mingled long ago, and it is right that this relationship came when it did. Because of all the things that have filled my life, both good and bad, although the bad always, in the end, turns out for the good, I am filled with a powerful gratitude and fullness for my life in all its twists and turns, and I am truly blessed. I have reached a quiet acceptance and surrender to what is and am content, an “easy silence” (The Dixie Chicks) both with my life in general and with Jerry. I can do no more than that.

Jai Ma!!

The Exchange of Rings in Los Angeles

Anatomy of an Illness, Part 13

It is 2:30 AM and I am wide-awake after two and a half hours of sleep. My sleep cycle is so impacted by my meds and my illnesses. I will remain at the computer writing for another couple of hours and I will then take a long nap on the sofa at around 4:30 for an hour or an hour and a half. This time of night is wonderfully quiet and allows me to be with my thoughts, away from the daily noise in my brain when the sun is out. Nighttime just quiets me down, and puts me in a place of serenity and peace. The daily noise in my head, noise from the body pain and imbalance from Parkinsonism and the pain from neuropathy in my feet lose their edge and I have some respite from it. It is during this quiet nighttime that I write my blog. I wrote my book Thoughts of a Tribal Elder only at night and it took me nine years to write the book. I guess I do my best writing at night, at least according to all of you who have contacted me by leaving comments on my blog and according to the reviews some of which are on the book’s website. You can get to the blog from the book site; click “blog” on the menu. http://queerwitness.com or go directly to the blog site, https://queerwitness.wordpress.com

Well… my 68th birthday has come and gone, and what a birthday it was! Jay Rock and Russell Rahn, my two very best friends from high school, and with whom I am still deeply connected came to Chicago to celebrate my birthday. We ate in fabulous restaurants, such as I would never go to because of the expense. We started with brunch on Wednesday. Then on Thursday we went on the Chicago Architectural Foundation boat tour of the beautiful Chicago architecture. That evening we ate mounds of Sushi at a fine Japanese restaurant near my apartment. Then on Friday we went to The Art Institute for about four hours to look at the Impressionists like Monet and Manet and VavGogh and of course “Le Grand Jatte” by Seurat. The original is in the Art Institute and it is very beautiful, but I love Monet more. I saw the Hay Stacks and Big Bens, both series being there. I saw my most favorite Monet “Morning on the Seine at Giverney”. Jay and Russ pushed me in a wheelchair for the full four hours. This was followed by a lavish, extraordinary dinner at Russian Tea Time where we ate exquisite Russian cuisine. On Saturday, I spent the day sleeping and just taking it really easy and they came around 5:30 to Jerry’s and my home for dinner, which was lobster tails and asparagus followed by Jerry’s Almond Crepes and that closed down my birthday weekend. It was indeed the best birthday I have ever had in my 68 years of life. It was filled with such love between the three of us, and their care of me was quite moving. There was so much laughter, the kind I rarely experience. It was the laughter that can only happen among intimate friends. I shed tears of joy and gratitude for the depth of their love for me. I managed to pace myself well so that no one day had too much activity in order to rest between events.

This is the 50th anniversary of my graduating class from Mt. Lebanon High School in Pittsburgh, PA, and the three of us planned to go to the reunion if for no other reason than to look and see what happened to all those horrible people, many of whom, in fact, grew up to be truly delightful, wonderful, and compassionate people, people with a heart, people who truly want to be my friend, to support and care about me and for me, people who, in high school, had no idea I was going through such pain and agony. Consistently, they said that had they known that I was struggling so much, they would have certainly supported me in any way they could have. Most of these compassionate people, by the way, were women. Very few men from my class had anything to say to me on the website for the reunion where much conversation is happening among the alumni. One comment I particularly remember, from an obviously straight-as-an-arrow christian[sic] male, said that I had to “come to Jesus to receive salvation”. He told me what a sinner I was, and had a ridiculous opening statement of his concern and care for me and how proud of myself I should be for having done so much with my life. Then in the next sentence he went on a tirade about me being a sinner and how I had to come to Jesus in order to be saved. It was a typical “hate the sin love the sinner” thing, which is perhaps one of the most absurd and dangerous theologies to ever come down through the history of Christianity. It allows for such atrocities against us, because it justifies those atrocities. It allows for hate crimes and hate speech. Right-wing Evangelical Christians every time they say hateful things back them up with “it’s for your own good….you need to hear this”. I remember that such was what happened to me in the ordination process in the Episcopal Church. The Commission on Ministry with which I met every month for two years said the most hateful things to me regarding my homosexuality for a large part of the ordination process, truly believing that it was for my spiritual well being, because they “loved me so much”. One month before the ordination, after seven years in the process, it was pulled out from under me, because my theology was too Queer and too focused on the body. My sermons were too Queer. I was just too Queer. They used “gay” rather than “queer”, of course. Their supposed “love” for me during the process turned into what it truly was…HATE. I know that it was really a deeply imbedded fear of “the other”, and that fear was expressed through hateful acts. There was no spiritual after care for me. They just trampled on my soul and left it bloody in the streets. It turns out (as everything does) that it was for the good, that I was not meant to be a parochial priest. In fact, I was not meant to be a Christian at all.

For a long time I was a devout Buddhist/Taoist. Eventually the Buddha part was too heady and cerebral for my spirituality. There was no Mystery to it, and I need Mystery and a deity in my life. I have kept the Taoist part of my journey because it is central to balancing my life, but I also discovered the beauty of Hinduism. It suites me so much better than did Buddhism (and certainly Christianity). There is Mystery in the Hindu tradition. It allows for my relationship with the Divine Feminine, to whom I have been devoted for decades. I worship Her as Durga, the Mother of All Things. I can sing Kirtan to Her with Krishna Das, and, because I am one whose primary language is music, it is through Kirtan and bhajan that I dance in Her presence. I have pictures of her on my blog and on the lock screens of both my iPad and iPhone. There are images of Her in this blog. There is a picture of her leaning against my 19th century carved and painted Buddha on my desk. She is very beautiful with kind eyes and emanates a power sitting on her lion or tiger. She has taken care of me from conception, although I have only come to know that in the past ten years or so. She is with me in my walk with AIDS with all its illnesses. Sometimes when I am in a dark place around my illnesses, I forget Her goodness and presence in my life from the very beginning of it. Most of the time when I am not stuck in the blackness, I feel Her compassion and love for me, and I trust that She will continue taking care of me, giving me everything I need to live until my demise, and then in Her aspect as the Death Crone. She will take me to Herself and I will be back at the Source until it is time for me to come back again. This clearly is not my last life. There is so much for me yet to learn and to grow into. That cannot be done in one lifetime. It is not time for my nirvana. There is still much work to do.

Before going to sleep tonight, Jerry and I lay naked in bed, me in his arms and my head on his shoulder and we spoke of death, particularly his. We are changing our Powers of Attorney to include a DNR (Do Not Resuscitate) for each of us in our Living Will. Jerry talked of what will happen to me should he precede me in death, and, quite frankly, that thought scares the shit out of me, not just because I don’t know who will take care of me, how I will eat, who will do the cooking, do the laundry, clean the apartment, even put on my CROW because I can’t do it anymore, etc. I can hardly walk and Jerry does all of that and gets paid by the state because he is officially my Personal Assistant. I need someone 16 hours a day. The real fear is living without him to love and to be loved by. Half of me would die with him. I bask in his love as he does mine and to not have that in my life makes me wonder how I could possibly go on living without him. He and I, although powerfully strong and spiritually independent individuals, are really one person, and my heart will be cut out if he dies before me. The conversation saddened me deeply and I cried quietly with my head on his shoulder, because I could feel just how devastated I would be If I lose him. I must trust that the Mother will take care of me in all ways and always as She has done throughout my life and that She will provide for all my needs, probably in very surprising and unlooked for ways. When I trust, I am calm and all my anxiety just goes away, but, as I said, when I am in a dark place I can lose that trust. We also talked about arranging for cremation. Jerry is 74 and I am 68 with a terminal disease that is going to take its time to come to fruition, and it is time to think about these end-of-life things, especially for me because I don’t have any idea how long I will continue to live with Chronic Kidney Disease. I can’t have a transplant because I cannot take the immune suppressing drugs needed to keep my body from rejecting the new organ. My immune system is already so suppressed and compromised that those drugs necessary for a transplant are out of the question. They themselves will kill me, so either way this is terminal. I’m OK with that, although should I predecease Jerry, I am terribly worried about what will become of him. He says he will be fine, because he absolutely trusts his Higher Power in all things and that he will be provided for. I’m afraid that sometimes my faith is not as strong as his.

So, I have much to think about. I am certainly going to talk with my therapist today about this whole death scenario. I obsess over it and I know that doing so is very unhealthy. It is quite enough that I am unhealthy in my body; I don’t need to be unhealthy in my mind as well. Every day I find myself running the gamut of emotions and am sometimes I am overwhelmed with sadness and grief, but I am sober today, in recovery for 9.5 years, not having used drugs of any kind since February 4, 2005, and today I can say that I can feel my feelings, my emotions. Today I don’t have to use drugs to escape my painful feelings and memories. I am so grateful to be clean and sober, to be able to feel, to laugh again (which I didn’t do when I was using), to grieve profusely all the loss and tragedy in my life, but always Durga Ma is just waiting for me to come to Her and lean on Her and trust…just trust. Today with this trust I can honestly say that everything will work out. It always does and it will continue to do so.

Jai Ma!!

 

 

Anatomy of an Illness, Part 12

We moved two weeks ago to a wonderful apartment, but now the newest infection is a breakout of blisters on my ankles, which are flaming red and hot to the touch. My doctor says it is the fluid trying to get out of my body. I have gained twelve pounds in water weight. My barometer is how easy or difficult it is to button my jeans, which, at this point are almost impossible to button. I have to lie on my bed and close them lying down. That’s a really bad sign.   I have gained it all because I have been off my kidney low-sodium diet for a little more than two weeks. Before the move, with Jerry’s help I was carefully monitoring my sodium intake and carbohydrates, and for those two and a half weeks, I had to eat all my meals out because we finally made the move to our new home in Lincoln Park, a quite beautiful and vibrant neighborhood that is one block from my doctors’ offices and two blocks from my hospital and the ER, which I tend to be in a lot. The move took a total of two and a half weeks to complete: ten days of packing, one day to move out of Sheridan Terrace and move into 2756 N. Pine Grove, and one week to unpack. The last, and most fun part of a move is hanging the artwork. This will be done this week and next. It is always the last thing to be done, and when that is finished, the new apartment will feel like our home. It is a small one-bedroom with a dining area, large living room, kitchen, and bath with a large walk-in closet in a vintage hi-rise from 1925. It has faux wood laminate floors (yes…I know…very tacky) and lots of bright sunlight because our windows face south and west and we are on the top floor, overlooking nothing but another building. Compared to living in Rogers Park, this new space is very urban. Rogers Park is a quiet neighborhood with little nightlife but lots of noisy Loyola students living in our old building with their disgusting sense if entitlement and inconsiderate life styles. I am glad to be out of there after being there for six years. Plus, the building was a four plus one, which is from the 1960s and was built from dry wall with no insulation between the apartments for soundproofing. We could hear everything all around us, on top of us and below us,, and it was very disturbing. These old vintage buildings are made from concrete and brick and we cannot even hear the neighbors across the hall from us. It is utterly silent, which Jerry and I love a great deal.

The cats did not make the move very well at all. Gizmo we so traumatized by it that on the day of the move he was screaming as if a vet were de-clawing him without anesthesia, biting and scratching and spitting like a madcat, but Murfee (the more contemplative of the two) took it in stride and just meowed forlornly in her cat carrier a great deal of the time. Gizmo knew something was awry from the minute we brought in boxes to pack up our books, and his orderly world, which he had known for six years was suddenly in complete disarray. The food bowls were moved to another part of the kitchen, the cat boxes were moved to a different part of the apartment, and boxes and boxes of books and LP recordings were stacked one on top of the other with varying heights, which was the best thing for them because they got to play King of the Mountain. The boxes were piled so high that it allowed both cats to go up to the top of the bookcases and wander around right near the ceiling (they’re very tall bookcases). Both cats are doing well, however, and they are adjusting slowly but quite beautifully to their new surroundings. Gizmo stopped moping around and has started to eat again and he’s now back sitting in Jerry’s lap, which he didn’t do for nearly 2 weeks. For the first two weeks in the apartment he was a completely different cat than I had known for the past seven years. He lost his spark and infectious élan. He lost his sense of humor and couldn’t make us laugh anymore because he wasn’t doing anything that was funny. He became a Very Serious Cat whose world had been turned upside down. Now after almost 2 weeks, he seems back to his old self, or, at least, partially there – – more there than not, though.

Jerry worked like a dynamo. He did everything that needed to be done and he wouldn’t allow me to lift a finger to do any of the work. He packed up the entire apartment all by himself, while I sat around feeling guilty for being sick and unable to help. My disability affects not just me, but Jerry as well. It is something with which both of us need to live because it is what is, but that doesn’t take away the guilt for me. I suppose it’s part of my work ethic, and one of the reasons I have such a hard time napping during the day when I need to nap almost constantly. I’m now down to two hours of sleep a night. We go to bed at midnight in our home. I know that seems late and not very healthy, but if I only sleep two hours going to go to bed at 10 o’clock and waking up at midnight for the rest of the night seems absurd to me. So we go to bed at midnight and I awake around two or 2:30 in the morning. It doesn’t seem to matter what time I go to bed at night. My time for sleep is 2 to 2 and half hours. I’ve tried to stay in bed longer and sleep, but I simply cannot do it. After that short period of time I’m wide awake, so I eat some food when I wake up and then sit at the computer and write until my eyes won’t stay open anymore and then a nap on the sofa, again for two to 2 1/2 hours at a stretch. I nap that way throughout the day.

I love going to sleep with Jerry at midnight. We have a ritual that we do every night, which is that we lie naked next to each other in bed with my head on Jerry’s shoulder, him on his back and me on my right side. He strokes my hair, what little there is of it, and I listen to him breathing with my ear on his chest near his shoulder. Sometimes we talk, and sometimes we’re silent, but the intimacy and a feeling of gratitude, trust and love is so present, so overwhelming that sometimes I feel as if my heart will burst with it.

It has taken me being in 12 – step recovery to allow myself to be in this relationship with Jerry. My recovery work has taught me so much, not the least of which is to learn to love myself with tremendous respect and with a depth and power previously unknown to me. It has given me my self-esteem back, which was completely destroyed in my prior relationship of 13 years. That relationship tore me apart, tore me apart to my very soul, and eventually drove me back into my active drug addiction. The pain from the relationship got so unbearable, that I knew exactly where to go to seek refuge. I found that refuge in Crystal Meth. Crystal Meth is a sex drug. And I would find myself in sleazy motel rooms naked with a stranger having the most outrageous and outlandish sex I’ve ever had in my life, and it took me away from all my pain. The last time I picked up and was out there I nearly died from an overdose. I went into rehab immediately after that, beginning that journey in a psychiatric ward psychotic and suicidal. For three days I was on suicide watch after which I was transferred down to the Valleo Unit, an LGBT rehab unit here in Chicago. After about a week in rehab, which was the best thing I’ve ever done for myself, I called my former partner who informed me that I was not welcome in the house anymore. I was homeless. So I was in lockdown rehab for 30 days and the most extraordinary 30 days it was, too. For the first time since I picked up my first drug in 1962, I was able to admit my addiction and work the first step of my 12-step program: we admitted we were powerless over drugs (crystal meth) and our lives had become unmanageable. As soon as I said these words not just out loud but also deep in my heart, I felt like a tremendous weight had been lifted off my shoulders. To admit my powerlessness was perhaps the most humbling thing and empowering thing I have ever had to do, but I found by working all the 12 steps, that the entire program is humbling. It is an extraordinary program of recovery and has enabled me to be in this wonderful relationship with my sweet Jerry. It isn’t just the 12 steps that contribute to recovery but the fellowship of the organization, which contributes perhaps even more. We say in Crystal Meth Anonymous, “we will love you until you can love yourself”. That’s exactly what happened to me. But the most wonderful thing is that the love that they had for me back then is even stronger now than it was at the beginning of my journey. Back then they loved me because I was one of them. Now they love me not just because I am one of them, but because of the life I’ve lived and the experiences that I’ve had and the way that I’ve worked my program over the last 9 1/2 years, not to mention how I live so optimistically with AIDS ravishing my body. That’s how long I’ve been clean and sober. It is truly miraculous.

So it is that my recovery program has actually led to the move into this wonderful new apartment. Jerry and I have been living together now for three years, but he had moved into my own apartment and, though we were both living there together, it was still my apartment into which he moved. This new apartment is not just a place to live, which is handicapped accessible for me and close to my doctors and hospital, it is our home, an apartment we both rented together and that feels wonderful. I am so looking forward to hanging the artwork this week and hanging drapes on our windows. Although the apartment is pleasant and filled with sunlight, it is still quite stark with nothing on the walls. I think those things are what makes it feel like home, the photographs and the paintings that are dear to us, that bring us our memories, that re-create a certain time and space in our lives that was of significance. I have a few different photographic portraits of myself from certain seasons of my life, all of which but one were taken post rehab. The photograph of myself that is before rehab is the publicity poster for my New York debut in Alice Tully Hall at Lincoln Center. Now that was a specific time and space that was of great significance to me. I suppose it still is, actually, or I would not have kept the poster. It’s beautifully framed and makes a wonderful piece on the wall. Jerry has photographs of his parents and his two daughters and a large needlepoint hanging of his complete family tree on which he himself did all the needlepoint. The most attention-grabbing piece of art is an enormous painting on wood worked with a single wire running throughout in varying patterns of architectural details of every single house of worship in Andersonville, a quite Gay neighborhood here in Chicago. I think that’s the piece I can’t wait to hang the most. We have the perfect wall for it, actually. It’s a Big Piece (3’x4’) painted by one of Jerry’s dear friends who is a very gifted artist. And I have an exquisite mandala also painted on wood done by one of my dear friends who is an equally gifted artist. The apartment will be warm and it will be our home and complete. The most important thing is that I will be warm and home and complete when those paintings and photographs get hung on the walls, because Jerry and I will be living here together in our retreat from the noisy world.

We spend a great deal of time in silence, Jerry and I. We both think there are too many words in the world, too much nonsensical non-conversation, too much conversation that really is of very little value. Texting and “liking” things on Facebook does not a community make, so that when people do come together there is little to say because significant conversation is long dead. The only place I find conversation of merit is with some other recovering addicts. Jerry and I can spend hours together in the same room at each of our separate computers saying nothing and yet knowing that the other is right there and our energies blend if not our voices.

Our spirituality is very similar and quite contemplative, hence the silence, although mine is more active than his. Even though we are both extreme introverts (I am an INFJ on the Myers-Briggs with my “I” going nearly right off the chart along with my “F”), I am far more gregarious, needing the company of others around me at least once a week, which I get on Thursday nights from the CMA home group in my apartment. The seven beautiful Gaymen in the group have become my extended family, my recovery family. They moved Jerry and me in six hours getting everything out of the apartment on Sheridan Road and into the apartment on Pine Grove Avenue, and there were some very heavy and large pieces of furniture. They insisted on doing this, not allowing us to pay a professional mover $2000 to move us, when they said they would love to do it and have done moving before. They said they really wanted to do it because they love me. I trust these men far more than I trust professional movers. The moving was joyous and deeply loving, but mostly it was a great deal of fun because the recovery family was moving a member of the recovery family to a new home, and the joy and gladness of that was palpable. Their spirits are in this apartment with us and will remain here always, and that’s a blessed thing. I also love that they come into the apartment every Thursday evening for one hour of powerful recovery work that can only happen in an intimate group which loves each other deeply, which trusts and respects each other equally deeply. I look forward to having friends over for dinner for an evening of good food, music, and togetherness. This apartment is my new home, our new home, Jerry and I, and for that I am truly blessed. The Mother has been good to me over these past nine and a half years of recovery, and I am so thankful and grateful for that. May She continue to bless me and my beloved, and all the friends and loved ones who love and care for me. Ma Durga be praised.

Jai Ma!!

Durga Maa with Her lion

Durga Maa with Her lion

Anatomy of an Illness, Part 11

Tonight I am in terrible pain throughout my entire body and I am exhausted to the end of time. I ate some cannabis fudge and cannabis cherry candy to try to stop this tortuous pain. I have hemp oil patches on my arms. I am so sad at what is happening to my body. The history and story of my body’s transformations is mythological and even epic. When I was a boy I was a fat, pianistic prodigy, self-hating, terrified Gayboy, a Gayboy who was terrified of anyone who would find out my secret.

 With my mother’s great help (she was a consummate Narcissist) I ate my way through all my fear and inner pain, which I expressed at the piano in remarkable ways. She fed me like the Wicked Witch fed Hansel to fatten him up for the oven so she could eat him—very Jungian. I was famous in our city for concert performances by age 11 playing major piano literature by Brahms, Beethoven, Bach, Debussy, Scarlatti, Scriabin, Schubert, etc. I didn’t want to be a concert pianist, though. It was my mother the Narcissist who wanted it so that she could travel with me to concerts around the world and be the Mother of the Genius. I wanted to be a concert harpsichordist, and, again, because Durga takes such care of me and knows my destiny, She put a harpsichord under my hands when I got to Oberlin. I changed my major after one semester and my mother was furious, irate, and even ballistic. I had destroyed her narcissistic desires for me (which were really for her, of course), which was such a Good Thing. In college, because I left my parents’ house of pain (it was never my house) at 18 years old and left for Oberlin College Conservatory and came out of my dark, self-loathing, evil closet into the light of a new day during my second semester at Oberlin with the help of an incredible, compassionate, and brilliant therapist who got me to love myself as a young Gayman, I became whole. It was that work with John (Ph.D.) and the journey I took with him to find my core self that I lost 50 pounds and all my darkness in one semester, 13 weeks of healing during that intense time. I was done with being miserable and found that part of me that had self-love hidden in it, that part of me that was beautiful back then (it’s still there, only far more beautiful and mature now). If you wish to know about my early, young, young adult and adult life and journey, by the way, read my book Thoughts of a Tribal Elder: One Queerman’s Journey from the Ashes Risen. In any event, my out Gay life began in January 1965 when Coming Out was a downright revolutionary act. Relatively few LGBT people were out back then and certainly not at Oberlin. I was alone with no community, but that was quite OK because I had escaped a place of possible suicide and I was liberated from my closet.

 I remained slim for the next 16 years when I began to pump iron at a Gay gym in Chelsea in New York City. Within one year my body transformed itself into a beautiful thing that was exquisite, cut, with a six-pack and pectorals to beat the band, high tight glutes, thick thighs, etc. Unknowingly, I was putting to rest my mother’s words to me as a child: You are a fat, disgusting pig, Roger. Get out of my sight. You make me want to vomit. And this when she was the one feeding me constantly. Some crazy shit, huh? Anyway, I had yet another body transformation. That body lasted for eight years when my HIV began to work its evil majick. Over the course of my early journey with AIDS, I lost 60 pounds and looked like a survivor of Auschwitz or Dachau . In 2000, my t-cells were back up above 200 (they had dropped to four at the time of my first opportunistic infection, and I named them). Later my viral load became undetectable and my Kaposi’s Sarcoma (an AIDS-related cancer) went into complete remission. I felt much better. I had cheated the Death Crone out of Her due. I have had my recuperated body initially for seven years. In my eighth year of new life from death, my body started to shift again, and I began to get really sick fairly often with various strains of pneumonia and one bronchial; infection another and the HIV, which was not supposed to make me sick anymore as my viral load was so undetectable, got active again. I had it in my spinal fluid and, therefore, my brain, and I began to experience dementia. A change in HIV meds to one that would cross the blood brain barrier took care of the dementia very well. It was at that time that I began to develop Parkinsonism, which was initiated from the brain damage that I had from my first opportunistic infection in 1995-96, HSV Encephalopathy, remember? Since then the Parkinsonism has escalated something fierce, and now I have Stage 4 Chronic Kidney Disease as well. My body, this corporeal thing in which I have lived for one month short of 68 years, is finally shutting down and the parts of this magnificent machine are slowly wearing out until they simply stop because of that I have been, for a second time in my life, contemplating my mortality in deep and profound ways. You read about that in Part 10.

 So goes the story of my conscious journey with that extraordinary thing called a body. I have experienced it as a complex and miraculous thing, indeed. It has treated me from very very well to very very badly with everything in between. There are times now that I hate my body. It has become disgustingly disfigured because of Testosterone Replacement Therapy over the course of four years. I look at it in the mirror and see it as a greatly grotesque thing. The Testosterone Replacement Therapy backfired on itself and I developed an uncommon reaction to it called Estrogen Overload Syndrome, and my body has completely morphed and I have female body characteristics. My beloved Jerry, however, doesn’t see the disfiguration at all. I feel as if I am in the Hollywood film from 1941 called “The Enchanted Cottage” with Robert Young and Dorothy McGuire in which two people, one disfigured by WWII wounds and the other very plain and dowdy, are so in love that they live in a world where the disfiguration and plainness are not even seen by either of them. Jerry says that I am not grotesque, and he completely accepts everything that is going on in my body because it’s where I am in life and what is, is, and because he is so fucking loving that he accepts me completely as I am, sickness, body disfigurement, severe body dysmorphia and all. My husband is an Archangel who has entered my life and with whom I have been abundantly blessed 100 times over. It took 65 years of my life to find real love, and I found it because of my 12-Step recovery program for drug addiction. Through it and the spirituality it engenders, I have come to know great serenity and peace. Over the nine years that I have been clean from all drugs and have my addiction well taken care of, I have learned from a primal place where I can now respect myself and love myself from the depth of my spirit and psyche. This allows me to love another and receive his love for me. Jerry, too, works a recovery program. His addiction is different from mine. He has come to that same place inside himself of self-love and respect that allow us to come inside each other’s spirits and say hello, spirit-to-spirit and so sexually body-to-body.

 I know that this is quite different from my other postings, but, because of the cannabis, my pain has diminished and I am felling the great inner strength of my body and spirit. I feel a powerful life force coursing through me. Durga Maa, the Mother of all Things, has been so good to me, has been with me through that entire history of my body from a sexually, physically, and emotionally abusive childhood to being a senior citizen of great psychological and spiritual health. I love Her as She loves me and as I said in Part 10, I am content and happy and am filled with creative energy and life, even in the midst of death. My Spirit soars with joy. I live a Yin Yang life fully. There is great darkness, yet there is light to be found in that darkness, and there is great light, yet there is darkness to be found in that light. This is not a battle between the light and the dark, but, rather, a complimentary relationship of two like things wherein one simply cannot live without the other. They need each other to exist in order to make the circle complete, and when they are out of balance, we can become depressed, anxious, have panic attacks, engage in addictive behavior or get stuck in our spiritual journey and cannot move forward Into a greater understanding in the deepest places of Who We Really Are, i.e. we are the embodiment of the Divine. For some it is Jesus, for others it is God, and Goddess and yet for myself it is the presence of the Divine Feminine, Durga, also called the Death Crone, or Kali, all bringers of both life and death, light and dark combined in one unity, destroying all dualities that separate us from the God/dess of our understanding. Something I do in meditation and prayer is to contemplate that Unity. It is the unity of masculine and feminine energies and archetypes in Divine Purpose that makes me call my Higher Power God/dess, the ultimate Unity of masculine and feminine. To call the deity or the Energy God implies the masculine alone, and to call the deity or Energy Goddess implies the feminine alone. God/dess is complimentary giving the deity aspects of both in Unity. I pronounce it as two very distinct syllables: god and dess with no accent on either one of the syllables. When, during meditation and prayer, I achieve that unity in consciousness I am in Samadhi, and I can forget for that time all the tragedy that HIV/AIDS has wrought in my life and in the world, both my immediate world and the larger world in which I live. Nine and a half years ago in order to forget the tragedy, I would have put a needle in my arm loaded with crystal meth. Today I don’t have to use, I don’t have to relapse, I can believe in a Higher Power who takes complete care of me and loves me and keeps me sober. My life is so incredibly blessed. I am content. The inner drama is over.

The turmoil and pain are long gone. I can honestly say that in the midst of death, I am so very happy and I love and trust my sweet Durga Maa more than ever.

 Jai Ma!!

Durga Maa, the Mother of all things

Personification of Durga, the Mother of all things

Anatomy of an Illness. Part 10

I’m dying, slowly, indeed, but still I am at the end stages of my life.. There is no question anymore, but that I am terminally ill with Stage 4 Chronic Kidney Disease (CKD). The lab work came back and the GFR is 28. To be normal, it must be >60. Mine is very low. Everything in my life is now going to change and I have to make some very important life changing decisions regarding the course of my walk with this disease. First, of course, I will speak with my Nephrologist, to whom my Primary Care Physician referred me, and who is also my HIV doctor. Todd has never steered me wrong when it comes to referrals. He sent me to a most wonderful Cardiologist a month ago, and our work proved that my heart is incredibly strong and healthy and, therefore, not responsible for the edema throughout my body. It was so bad, I could not even wear my CROW (a black plastic orthotic boot up to my knee for Charcot Foot, a condition that comes from having severe peripheral neuropathy due to the virus and my toxic HIV meds. The neuropathy got so severe that all the nerves in my left foot died and consequently all the bones in my foot softened and broke, healing in a deformed way so that I cannot wear a shoe on my right foot ever again. The boot mobilizes the foot so that there is no further damage and there is no pain when walking.

Regarding my CKD, because my immune system is so suppressed, I am not eligible for a kidney transplant. I would have to take immune suppressing drugs in order for my body to not reject the new kidney, but I cannot take those drugs, because my immune system is already so compromised from HIV that taking post- operative transplant medication would kill me. The only recourse is to let the disease take its course, which leads ultimately to death. What is left for me is dialysis and I don’t know that I want to have my days controlled by the procedure, which requires three hours a day, three days a week in a dialysis center. My friends who I trust implicitly tell me that I can try dialysis and if I am uncomfortable with it I can always stop, but then what happens to the fistula which has to be put in my wrist in order to have access to both a vein and an artery? How will it affect the quality of my life? Is there an exposed tube like with a central line or a   PIC line? One can only have dialysis for a finite amount of time, which I know can be years, but I don’t know that I am ready for that kind of commitment. My psychiatrist who monitors my psych meds tells me that I nap so much during the day, I can just as easily nap during the dialysis treatment, or I can listen to my wonderful classical music and the Kirtan of Krishna Das, or I can watch TV (I’m told they are available for each reclining chair). Both of those things I do at home every day anyway, so why not at a dialysis center? I suppose he is right, but it seems so invasive and intrusive, and I don’t know that I am ready for that. My Nephrologist says that people don’t die from kidney disease anymore, but if I cannot have a transplant, will I continue to live? I don’t think so. I believe that would be similar to having my life controlled by chemotherapy, which it was for three years from 1997-2000 for Kaposi’s Sarcoma (an AIDS-related cancer), and I swore to myself that I would never put myself through that again. The chemo sickness almost killed me twice with two different chemo agents (they tried four different ones over the course of those three years, because the side effects from each were impossible to live with). Both of those hospitalizations were spent in the ICU for a week before I was sent own to my own room for another seven days. So, I have much to think about over the course of the next few months. As it stands now, I don’t need dialysis, but my doctor says that eventually I will have to do it in order to stay alive, but am I really living when my life is controlled by the dialysis? I really want to think about my theology and spirituality around death and dying and come to a place of complete faith that we do, indeed, have a soul that leaves this corporeal body and goes back to the Source, for me, the Mother, Durga. May She shower me with Her love and devotion. That’s a lot to ponder.                                                                                                                      

Needless to say, since my diagnosis, I have been dealing with my mortality and all the issues that brings up. The grieving is something terrible, and the rage that goes with that is equally terrible. I grieve for the life that is no more, my past wonderful, dramatic, musical, majickal, crazy life. I am enraged that AIDS is killing me before my naturally appointed time. I will be 68 in a month and a half, and I have the working body of an 80-year-old. I have not felt these emotions about my life and death since the 1990’s during the Death Years when death was imminent. It was so for countless thousands of Queermen, and it was supposed to be so for me as well. I triumphed over the will of the Death Crone who certainly wanted to take me to Herself during my 10-day coma between 1995-1996 when I had my first opportunistic infection—Herpes Simplex Encephalopathy. I did not go with Her, however. It was not my time and, like Orpheus, I returned from Hades back to the surface of the Earth. Orpheus who, upon his return to the surface, was torn apart by the Eumenides. Perhaps now the Eumenides are tearing me apart through my kidney disease and my Parkinsonism, not to mention the peripheral neuropathy, which cripples me more often than not. Up until today, I have not been able to go outside without Jerry to hold on to or otherwise I would fall. This past winter was especially treacherous with all the snow and ice in Chicago. Before I got my walker today, I could not even stand in one spot on a street corner waiting for the light to change without losing my balance and falling over with Jerry having to hold me up. I say up until today, because today my Rolator/Transport Chair arrived (the Rolls Royce of walkers) and I used it to go to my cornea specialist. It was quite miraculous. I can walk again with stability and I don’t need Jerry to keep my upright. It will allow me to take a bus without the danger of falling when I get on or off. The walker has given me a great deal of freedom and independence, which I did not have prior to getting it. In fact, I was so dependent upon Jerry and could not go anywhere without him, that I was reaching a point of despair over it. It’s very hard for me to be dependent on someone for nearly everything, and I thought it would be that way for the remainder of my life. I felt like an invalid, a shut-in, but now I feel as if I have gotten a good part of my life back, and I am filled with gratitude.

Even though I have so much for which to be grateful, it has been really difficult to feel it these past months. Today, gratitude is almost overwhelming, and perhaps now I will feel gratitude for all the blessings in my life. I have so many people who are dear friends in recovery and not who love me and care about me and for me. I am writing this blog. That’s a blessing. I am grateful to be able to say that I can still write. I am grateful to be able to feel grateful. I am grateful to have a partner who loves me beyond the beyond and who does whatever is necessary to see to my needs. He is not doing that out of some neurotic need to feel needed so that he can feel good about himself. He is doing it out of a deep and abiding love that is founded on our spiritual lives together. We are both in recovery and although I am more eclectic in my spirituality (his is more generic and 12-step) we are, at the core, so spiritually similar and connected that we speak a similar spiritual language. Mine is centered in the Divine Feminine, the Mother, and his is not, but that doesn’t matter, really. What matters to each of us is that we love and respect each other as Children of the Universe, me as a Child of the Mother, Ma Durga, who is also an aspect of the Death Crone, whom I met in 1996 when I died and came back. My life has been filled with wonder, passion, drama of the best kind, and intense majick. I have had a good life, and now I have entered a spiritual realm when my body is shutting down and I will die when it is finished doing that. Who knows when, but the Parkinsonism and CKD are killing me, and the peripheral neuropthy is crippling me. And yet, for the most part I am happy and content and can ask for nothing more.

Having the health issues that I do have makes me think a great deal about death and the afterlife and whether or not we have a thing called a soul? If we do, what happens to it when the corporeal body leaves this plane? What do I make of the church, synagogue, and mosque’s teachings regarding what happens to LGBT people when we die. Their teachings certainly say that we are destined for an eternity of pain and damnation, but it is vital that we counter those evil, hateful teachings from their own bigotries and the Texts of Terror from their Scriptures with self-love rather than self-hate and get to the truth about a loving deity who only loves us unconditionally for being Queer. Where do our souls, if we have them, go when we leave this plane? I remember when, during the Death Years of the AIDS War, dying Queermen would come to me for spiritual direction (I hold an M. Div.), and the question that was invariably forefront in their minds was “what will happen to me when I die?” I had no answers for them, only compassion and love and pointed questions to help them get to a place of contentment, at least. When facing our mortality, we as LGBT people will more than likely have those old messages from the pulpit haunt us until the final moments. We must learn that as LGBT people we are a good and righteous people, a people of compassion and altruism, of community and sexual/gender fluidity as the Divine had long ago declared from the very beginning of our species. We must learn that we are truly loved not in spite of being Gay, but exactly because we are Gay, because we live in Divine Justice, and no one person or religious institution can take that away from us. My work as a spiritual director was to get those beautiful young Gaymen to a place of peace and serenity as their bodies, our bodies, come to their final end. We must, all of us, if we are to survive as a people, know in our heart of hearts that our bodies and our beautiful souls are exactly as they are supposed to be, as planned by the Creator, and the Crestor dances with sheer and utter joy as we learn to spiritually love that which She created.

Jerry I are moving on April 26th to an apartment in Lincoln Park in Chicago so that I can be right near my many doctors who are all in the same professional building. Where we are moving to a building that is also handicap accessible, which our current building is not. The building, built in 1925 with a lot character, is only one block from all my doctors. It is also two blocks from my hospital so that when I have to go to the ER, as I often do, it will be right there. Where we live now requires that I take a cab to all my appointments and to the ER. Living near the offices will save me over $1500 a year in cab fares. We are so blessed to have found an apartment in the neighborhood we wanted, in the building we waned, and the apartment we wanted. That’s a blessing, indeed. All in all, life is good.

My magnificent harpsichord. She sang for me with the voice of the Great Mother. She was my child. AIDS made me sell her.

My magnificent harpsichord. She sang for me with the voice of the Great Mother.  She was my child.

In the midst of illness, joy abounds after a great recital.

Anatomy of an Illness, Part 9

This part of the series is devoted to my life-long relationship with music and how it keeps me well even in times of terrible illness and the deep spiritual crisis inherent in the existential loneliness of the dying process, however long that may take.

 Music fills my soul and my body.  I cannot listen to any music without embodying it fully. Music is not at all cerebral for me. Rarely is it in the background. I was five when I began piano lessons and that started me on a road to a concert career (not because I wanted one, but because my Mother wanted to have a son who would be famous).  We had the first television on the block in the 1950’s and I would watch and listen to Arturo Toscanini and the NBC Symphony Orchestra when I was five until the series was stopped years later. Classical music has been in my blood from the womb. Even though I didn’t really want to be a pianist, my training was such that I was playing recitals and concertos with orchestras when I was eleven and up until my first year at Oberlin College Conservatory.  It was there that I found my true love. There was a harpsichord in a practice room and I sat down to play it having wanted to study it since childhood. I went off to London, to Trinity College of Music, to study with one of England’s premier harpsichordists. That began my life as an international concert harpsichordist. It took six years of study to learn to play it even mildly well, but I practiced constantly, because I could not get enough time at the keyboards. I finally came into my most mature playing in 1992 after twenty years of what I consider very mediocre performance  . I began my concert career inn 1972 and continued until my retirement from the concert stage in 2009, because AIDS-related Parkinsonism finally did me in as an artist. I lost my dexterity and my hands shook uncontrollably.  I miss my career, but I am writing and that fills my creative spirit a great deal.

 I was told more than once that the thing that made my harpsichord playing unique among my colleagues was that rather than playing from my emotions or my intellect, which were certainly always present but never paramount, I played from my groin, which, indeed, was paramount. My interpretations of 17th- and 18th- century literature were highly embodied and sexual.  It riveted my audiences who were moved beyond themselves during my recitals. When I began playing recitals I had terrible stage fright, but as the years went on and my spiritual journey progressed, Ii was able to detach my ego from a concert performance. It was my ego that created the stage fright. I was worried about people’s reaction, whether I would play note perfectly, When I detached from it, I didn’t really care what people thought, because “I” was not playing.  Rather I became a vessel for Something Greater Than Myself, a conduit for the Universal Spirit to use as it would. I used this gift to create community among my audience members. Complete strangers upon entering the hall, members would walk out of the hall with their arms around each other’s shoulders, chatting as if they had known each other before. I had audience members who would come to me in the Green Room wiping away tears and tell me that they had never experienced such ecstasy before.  When I played, I ripped open my chest and exposed all my vulnerability, my deepest heart, my Spirit thus giving them permission to do the same, perhaps for the first time in their lives. My concerts were a great part of my transformational work for which I came back from death in 1996. I know I came back specifically because I had this great work to do, and I did it through my concerts and my teaching, and, when in seminary in the middle of my international concert career, I was an intern at a church in Palos Hills and preached every other Sunday because the Rector loved my preaching as did the parish congregation who told me that I preached with fire and passion, but always compassionately and pastoral.  This is what I did with my music. I not only played recitals this way, it is also the way I taught for thirty-two years, twenty-three of them on the faculty of the DePaul University School of Music. I have to say that my life has been blessed beyond my wildest dreams. It has also had more pain in it, physical, emotional, and spiritual than one person should ever have to go through.  Living through the AIDS holocaust of the 1980’s and 1990’s formed me to a great extent into who I am today. I have known the most debilitating illnesses, death, near-death, excruciating pain, chemotherapy, radiation, and HIV retroviral treatment with all the incredibly toxic medications that I have to take in order to stay alive. I suffer from Bi-polar  disorder, depression, and generalized anxiety disorder that is controlled also with medication. I take thirty medicatrion every day, some of the twice a day, some once. Through it all, I never lost the power of music in my life. Today, because I cannot get around terribly well, I listen to music to heal my spirit, to bring me joy, to bring me gratitude, to hopefully bring me some serenity and peace in my AIDS-ridden life.  It’s not easy.

 Two weeks ago I was diagnosed with Chronic Kidney Disease (CKD), either Stage 3 or Stage 4.  I won’t know which until the blood work comes back next week, and I get the results of the ultrasound, which is happening tomorrow, and the Nephrologist figures out something called a GFR.  That will tell us which stage I am in. What I know is that this is terminal eventually. I cannot receive a transplant I don’t think, because I cannot take the immunosuppressive drugs to keep my body from rejecting the transplanted kidney. My body is already immuno-suppressed. I could live for years, or I could live for months. There is no way to know because the CKD is related to my HIV and the medical profession is still trying to figure out what to do with thirty-year survivors like myself who are presenting with severe cancers, kidney disease, liver disease, strange infections, various forms of Parkinson’s Disease, etc. I have both CKD and Parkinsonism and peripheral neuropathy to the point not being able to walk at times because of the excruciating pain in my legs and feet. I have an infection that hospitalizes me every other month.

 I’m frightened of the future because I am afraid of the dying process, not of death itself, but the process leading to it. It is so hard for me to stay in the moment and not project into the future. I am also having severe PTSD flashbacks to the AIDS War and all the death that was a daily occurrence. I lived with death all around me for twelve years before I myself got sick and was diagnosed with AIDS in 1995. Through most of my illness, I continued to perform and teach.  It kept me alive and vital in the world.  When my first opportunistic infection healed (Herpes Simplex Encephalitis), I had forgotten how to do everything including how to play my harpsichord. There was too much damage to my neurotransmitters and It took two years of rehab three days a week for me to be able to re-teach myself the instrument and to be able to pick up my teaching career, not to mention learning to walk, to eat, etc. I worked so hard to continue my career and to play my music, I was not about to give up my vocation. I knew why I came back from death.  I had my transformational work to do in the world, and I had every intention of carrying on that work. I oould do nothing else.

 I feel so utterly alone in this process, even with all the blessings by people in my life, I am traveling this journey completely alone with my loved ones walking with me, but they cannot walk it for me. I feel isolated in my apartment, only seeing the men in my Thursday night Crystal Meth Anonymous (CMA) meeting that I formed in my home, my doctors, my therapist, and my beloved spouse, Jerry. My world used to be so large, so colorful and dramatic, filled with passion for so much that is life, and now my world feels terribly small, like it has diminished exponentially.  It has become a little life, and maybe it’s time for me to live a little life now relaxing into the inevitable.  I try acceptance for what is, but I have such a hard time doing that. Since birth I have been a fighter to survive and even to thrive. I fought my way through a most horrible internalized homophobia with intense psychotherapy during my first year at Oberlin in order to come out of my closet like a bomb exploding at a time when very few Gay/Lesbian people were publically out in 1965 when I was 18 years old. I have been fighting for my place in the world as the best Queerman I can be since then, giving myself to the world as I can, but only in my authenticity or not at all.

 Today, the only way that I can stay in the moment is through listening to music with my earbuds.  I like them better than speakers because the music pulses through me and I feel alive with the rhythms and harmonies and exquisite melodies that infiltrate the whole of me. Music heals my spirit.  It calms the chattering and noise in my head the way meditation cannot. I can listen to the music of such great composers as Mahler, Bach, Brahms, Prokofiev, Ravel, Couperin, Rameau, Scarlatti and other such classical composers, but I also listen to Janice Joplin, Peter Gabriel, Nina Simone, the Doors, The Rolling Stones, and, of course, the Beatles.  My musical tastes are eclectic, but that’s because all that non-classical music is still great music.  It is iconic of an era filled with the Universal Spirit of justice and freedom. There was tremendous craft and purpose to both the music and lyrics of the songs of the late 1960’s and early to mid-70’s. I don’t believe that popular music today is really music at all.  Heavy Metal and Scream Bands, Rap and Hip Hop are not music to me. They are just more noise in the world and have no healing powers for me the way the earlier music does. Today’s popular music says nothing at all to me.  It just gets in my way. Classic Rock has as much healing power for me as Classical music does. During the time since the CKD diagnosis, I have been repeatedly listening to Peter Gabriel’s “Don’t Give Up”.  If it were legal, I would quote the song, but it’s not and anyway the music is so vital to the reality of the lyrics that without it, the song is not the same. It does not have the same impact. It makes me feel closely those I love who stand by me no matter what, who love me beyond imagination (“Don’t give up, ‘cause you have friends…’cause you still have us”), who support me and “have my back”, especially the recovering addicts in my Thursday night CMA meeting in my home, my extraordinary doctors who take such good care of me, my friends outside of my recovery program, my beloved brother, Len, and, of course, my spouse Jerry who can never do enough for me and who loves me so unconditionally with such a depth of spiritual passion that it is hard for me to fathom sometimes.  I used to think that I didn’t deserve such love, because in my youth I never had it, so my four previous long-term relationships were terribly abusive both emotionally and sexually because I unconsciously thought that was all that I deserved. But then, I went into a drug recovery program and discovered just the opposite, and then Jerry came into my life and now I know what it is to be respected, revered, crazily loved, and spiritually, emotionally, and sexually connected like I am with no one else nor have I ever been, and I can receive it fully because I am loveable and deserve it. And yet, with all of this, I feel completely alone on this journey, which ultimately is one that is definitely walked alone existentially.

 I listen to a great work like the Mahler Second Symphony and weep with the beauty of it, or the grandeur of the Eighth, the pathos of the Third, or the profundity of the Gorecky Third Symphony, the Dawn Upshaw recording, of course. There is the almost overpowering intimacy of the harpsichord and viol masters of French Baroque: Couperin (both Fr. And L.), Forqueray, Marais, St. Colombe and also the Italian Baroque of Monteverdi, and definitely the fire and passion of Scarlatti. There is so much to listen to and inculcate and there will never be enough time in my life to listen to all that I want to. Music can send me into paroxysms of ecstatic bliss and right now the only relief from the unspeakable grief for what I have lost and from the anger about the whole situation in which I vacillate can only be found there.  I cry a great deal now, not just from the loss and anger, but from the extraordinary love my chosen family shows me, and I would pray to the Spirit of the Universe, God/dess, my Higher Power for strength to continue the walk in the right way, to help me live in the moment and be able to make important quality of life decisions with the help of the voices of those I trust with my life, because ultimately that decision must be made, but any sense of Divine Presence left me months ago. I am the one who must make those decisions (such as whether or not I want to go on dialysis, which I am not sure I want to do when it is time for that). It is much the same as making a decision to use or not use chemotherapy and radiation to quell cancer.  I had chemotherapy for three years from 1997 to 2000, and I will never put myself through that again.  Life is not to be lived with such poison in the body, although I have been living with that same kind of poison since 1991 when I began my anti-retroviral treatment. HAART (Highly Active Anti-retroviral Therapy) is chemotherapy except it is swallowed rather than IV’d into a vein. The toxicity of my medications is the same and has no doubt contributed to my CKD, but if I stop them, I will get terrifying opportunistic infections and dying will definitely be excruciating.  I witnessed it and experienced it during twenty years of the AIDS War. So, I have decisions to make and I must have a clear head in order to do that.  I cannot make my decision out of a negative fear, but, rather, out of a positive regard for the quality of the life that I have left when that happens, and even though I make the final decision, I must do that with the conversation and wisdom of those I trust with my Spirit.

 My life, even after my AIDS diagnosis, has been incredibly wonderful and blessed, but I can’t think about the past because it is the past and it just makes me really grieve for what was, nor can I think about the future because that just produces anxiety and panic.  I can only stay in the present moment if I am to get through this with any semblance of calm, peace, and serenity. I only have now. So, I will do the only thing I can do which is to continue walking as I have been, feel all my feelings of grief and anger and go through them to the other side, and live in the love that surrounds me, listening to my beloved music. 

Anatomy of an Illness, Part 8

Tonight I am not in such a good emotional/psychological/spiritual space.  It is all beginning to get to me in rather personally desperate ways.  I was just discharged from St Joseph’s Hospital where I was in a double (!) room (I nave never been in a double room before and roommates are not nice). From now on I will request a private room where I can listen to my music or watch my TV and turn out the light when I go to sleep (my roommate kept his on both nights and the TV was going all night while he slept). Roommates in a hospital can be very rude because they are, rightfully so, focused on their own needs and getting themselves well, and don’t really much care for how their new roommate is or what my needs might be.  He didn’t have much to do except not sleep through the late night TV programs played without regard for my privacy at all, and politely turn out his lights.  He had the room lit up on his side and I was only divided from him by a voluminous curtain, which I kept tightly closed in order to retain some semblance of privacy.  I was not used to this at all.  I have always been given, without asking, a private room, always with the large window overlooking Lake Michigan and the Park below. So, I knew from the first ten minutes in the room that this was not going to ne a particularly smooth hospital stay where I would get rest in order to heal. Fat chance!

The food at St. Joseph’s is an inedible horror story.  Everything is boiled down to nothing, such as carrots, broccoli, green beans, zucchini and fried dry chicken breasts.  Occasionally, there would be a great desert of which I always asked for two, because I knew that desert was going to be my dinner or lunch or, perhaps, my only dinner AND lunch that day.  I ate a lot of cherry Italian ice, which is just that…cherry and ice blended together which is not sherbet.  It is very Italian, and I ate a lot of it in Italy when I went there many years ago, eating sorbetto to my hearts content. That’s the only thing good in the St. Joe’s menu.  One would think that in a hospital the food would be marvelous because we are people trying to find healing and if we are what we eat, then with hospital food there is no real healing from it. 

For the past three weeks my body has been swelling, starting with my calves, and extending into my thighs, then my abdomen, then my arms and hands and finally my neck and face those three weeks. I had enough fluid in my body to equal an extra fourteen pounds in water weight. That, plus not being able to walk even 100 feet without getting winded and breathless is how I knew something was drastically wrong. Gaining fourteen pounds in such a short period of time says something is, indeed, definitely wrong, and my vanity got the best of me and I thought everyone would see me as a circus grotesque, a freak to be stared at. Between my bloated body, my CROW Walker boot, my very slow pace, my need to hold on to people for dear life when I am walking in the snow, of which we have had a lot, or I would definitely fall a number of times and I was afraid that one of those times I might fracture a bone.

 At first the doctors thought it was a cardiac problem. I was in the hospital only for cardiac tests.  I had a cardiac ultra sound, an ultrasound of my legs to make sure that there was no embolism, an ecco cardiogram, and a stress test in nuclear medicine where I was given a pharmacological stress test, because I cannot walk on a treadmill at all. My cardiologist is a new doctor in my life and I am very blessed to have found him through referral.  I would not have found him otherwise. He is gentle, compassionate, brilliant, and will become a good friend as well as my cardiologist. After all those tests, NOTHING showed up, ABSOLUTELY NOTHING!!! miracles, that’s exactly what happened.  I lost fourteen lbs. in 48 hours and I am back to my baseline of 203.  Now I feel as if I can start losing weight properly, because I really do need to get back to my ideal weight of 180 pounds.  I know I will do it.  It will just take some discipline and perseverance, but it can certainly be done. My meds, especially my psych meds and the Testosterone injections, put a great deal of weight on me well over my normal 180 pounds with a great deal fat on my hips, and thighs and belly.

The thing that is making my life with AIDS so difficult tonight is that I feel as if I have lost the two most important, self-revelatory, self-expressive, and valuable aspects of my life, my métier, my vocation.  Those were my performing and my teaching, which I began when I was in my late twenties at least as a harpsichordist and teacher.  I began my piano concert “career” at the age of eleven when I was playing piano recitals in major concert halls in Pittsburgh, PA. I watched the National Figure Skating Championships these past two days, and I saw some of the most exquisitely executed art as I have rarely seen and some concerto concerts with world class orchestras. Writing is something I have always loved, but my creative fire and artistic discipline were directed solely toward my music as if I had a set of blinders on, my focus was so narrow and rarefied. Writing was something I loved to do when I needed a break from practicing, performing, and/or teaching.  I no longer have my definition, my spiritual and vocational identity. AIDS and its related Parkinsonism have destroyed my musical life forever.  The only way I indulge in my musical otherworlds is by listening to it through an extraordinary set of earbuds or through my Bose speakers.  I listen incessantly falling in love with a different composer every couple of weeks, and playing every piece of his or hers that I can get my hands on during that two-week obsession.  This week for instance, I discovered a most gorgeous, deliciously performed disc of the music of Claudio Monteverdi with Nirai RIhal and Phillippe Janoussky with the Italian ensemble L’arpeggiata.  The album is called Teatro d’Amore  and Janoussky’s counter tenor voice is like sweet honey dripping from the comb, or melted dark chocolate with a touch of raspberry in it.  It is mellow, lyrical, technically better than any other I have ever heard.  If one dotes on melted, dark chocolate with natural raspberry and dipping strawberries in it as I do, Janoussky is the finest, smoothest, non-waxy, rich, not an over abundance of cocoa (about 60%-75%) chocolate, not too sweet, but not too bitter because of too much cocoa. His voice is the perfect blend of all those ingredients, a recipe for one of the most exquisite, sensual, musical body/spirit experience one can have, I believe.  His “Si Dolce Tormento” is a marvel of color and nuance, which just weeps with the “sweet torment” of love. He is utterly tormented in his singing, but singing with such discipline and surety with no “counter-tenor edge” which I hear in most counter-tenor voices. He can control his dynamics better than any other counter-tenor alive, and his vocal technique is impeccable. As beautiful a voice as David Daniels has along with his most incredible stage presence, I still hear a certain stridency and edge to his voice. Phillipe Janoussky has none of this. It is pure, utter beauty.  So, I have been listening to Monteverdi ever since I was in the hospital. It is an album of some of Monteverdi’s greatest and most memorable music. “Pur ti Miro” from L’incoronatione di Popea”, the “Lamento della Ninfa” from one of his later books of Mardigals. I don’t know what the next adventure is going to be, but there is no doubt in my mind that it will be exciting.

And so, my dear followers, you can understand that with such love and passion for my art, the loss of it is very hard, very hard indeed, perhaps the hardest thing I have ever had to endure emotionally and spiritually.  The loss began in 2002 when I had to sell my most exquisite, grand, splendorous Willard Martin French Double Harpsichord, painted in Chinoiserie that copied an instrument’s decoration from the 18th century in France (Gujon).  It was as exquisite to look at as to listen to.  It is known to be his finest instrument from his work as a pre-eminent world harpsichord builder.  It was built in 1981, the early 80’s being the best years of Willard’s career, just like pre-WWII Steinway pianos from the 1920’s were their finest years.  I owned one of those instruments as well but had to sell that also. As the instruments were taken from the house and driven away up the street in their respective vans, especially the harpsichord because it was my life, my spirit, my ground, the voice of my God/dess, I felt as if I had to sell my dear children in order to have money on which to eat and money to pay rent and my few bills.  AIDS has ruined my life from top to bottom. I had to get through a great deal of rage put on myself for having been sick, but as I say in a previous part of this Series, I don’t feel guilty for having infected countless thousands of men with HIV because I didn’t know I had it. No one even knew what it was, let alone who might be carrying it, or whether it was a virus at all. As I wrote previously, that doesn’t excuse my behavior of sexually objectifying my beautiful Brothers, but it does alleviate any guilt and that’s good.

The thing I am so distraught about tonight is that I don’t know who I am anymore.  If someone were to ask me “What do you do, Roger?”, I would now say, “Oh…I live with AIDS”.  If someone were to ask me, “Who are you, Roger?”, I would say, “I am a person with AIDS” For a while my writing alleviated all of that nastiness. I could say, “I am an author and film director/screen writer.”  I can no longer say that I am a great harpsichordist and teacher.  The only creative outlet I have is my writing, and I love every minute of it, but there are intermittent times when that self-identity goes away and I am left with being a Person With AIDS (PWA).

The only satisfaction in all of this, is that since my musical career came to an end, it allowed me to complete writing my book Thoughts of a Tribal Elder: One Queerman’s Journey from the Ashes Risen http://queerwitness.com This has been one of the greatest achievements of my long life and this blog is going to become my second book, no working title yet, though.   I have to see what shape it takes. I just have to keep writing because there is nothing else I can do.  In all humility, I have much to tell the world, to teach the world, and I can no longer do it through my music, but, rather, now I do it through my writing. But, on nights like this, after yet another hospitalization, I despair of being anything but an AIDS patient who spends his days in physician’s offices, hospital rooms, having blood draws, CT Scans, MRI’s, surgeries, excruciating pain from the neuropathy and the general body pain from my muscle atrophy from the Parkinsonism, just sitting at home, especially this winter in Chicago because of the horrendous snow which makes it impossible for me to walk with my CROW Walker anywhere outside, so I have been stuck in my apartment for weeks getting quite antsy and getting further into my head and all its darkness and neuroses. Thank God/dess that I am back in psychotherapy with Bruce.  He provides a very safe place to explore these feelings of loss and despair and he can help me focus on all that I have for which I am usually quite grateful, but lately, that has all escaped me.  I will keep writing and speaking my truths, my biggest one being that AIDS is still a threat and can still be terminal.  It is certainly a constant threat to me, and right now, that’s all I care about.

Anatomy of an Illness, Part 7

There is little real joy in my life. There is only illness, sadness, anger, and loss, a tremendous amount of loss starting with my childhood, which I lost very early on to physical, emotional, and sexual abuse.  I know that loss is a part of life and normal, but my loss is extreme and quite abnormal. I learned to survive and fight for an identity from a very early age.  There was no raison d’etre for me. There was no safety in my family’s home.  My brother, because our parents saw to it that we hated each other being the consummate narcissists that they were and pitted us against each other, beat the shit out of me and when I would go to my mother bruised and bleeding, rather than comforting me and chastising my brother and punishing him, she would ask me with venom in her voice what I did to deserve it. She would also feed me and feed me until she had to buy my clothes in the “husky” department, and then she would say, “get out of my sight you fat, disgusting pig. You make me want to vomit.”  My father sexually abused me, making me have sex with him and he would slip me $5.00 which was a great deal of money to me in the 1960’s, and tell me not to tell my mother, that it was a secret just “between us men”.  Understand that I was an eleven-year-old “man” even though in reality I was just a boy. The thing that drove me crazy is that I enjoyed it and I knew it was wrong. It screwed up my relationship with money well into my adult life. Living with Jerry has changed that as he teaches me how to handle it sanely. There was a tremendous amount of cognitive dissonance for me in my childhood and adolescence, knowing my relationship with my father was wrong but enjoying it at the same time. I hated myself all the way into my late adolescence because I knew from the age of five that I am Gay and I instinctively knew that I had to hide that secret at all costs, that it was a matter of life and death. 

 No one told me that being Gay was wrong. My parents never sat me down to tell me that attraction to another man was “disgusting” or “sinful”, but somehow I knew that I was both of those things and that I was a pariah in the worst sense of the word. It was not until 1964 when I got to Oberlin College that I could take my life back and not have to live in my sexual fantasies as I had done right up until I got to Oberlin. In my adolescence my lovers were literary characters. My brother was a voracious reader of avant-garde literature and very precocious. Many of his books were “off color” such as Henry Miller’s Tropic of Cancer and Tropic of Capricorn, James Baldwin’s Giovanni’s Room, William S. Burroughs Naked Lunch, an anthology entitled The History of Pornography that quoted famous pornographic authors such as Le Comte Donatien de Sade (he was not a Marquis, a title usually given to him), and the works of Jean Genet such as Our Lady of the Flowers and Querelle. Giovanni the beautiful Italian waiter in the Baldwin novel was one of my most powerful of my fantasy lovers. The others were the insane sex addict in the Burroughs novel and the prisoner and the sailor in the Genet books. I loved the work of de Sade, which may have contributed to my love of kinky sex and I truly loved Giovanni. I masturbated like a madman three to four times a day with images and feelings inside me of and for all those beautiful men. I engaged in anal sex with myself using whatever I could get my hands on that would penetrate me, and, oddly, that included the necks of Chianti bottles which my parents collected.  I used practically my entire hand as well. Such was the way I escaped the abuse and terror of my childhood. I lived in my fantasies and gave myself all the physical and emotional love that I was not getting from my monstrous family. All my parent’s friends thought we were the perfect family. I knew differently.

 High school was equally abusive with me getting punched on an almost daily basis in the stairwells during change of classes, with my attackers calling me “faggot” and “fudge packer”.  In gym class the teacher would have the class play dodge ball, and I was always, invariably, the one who had to dodge the ball, which was thrown at me across the gym by all the other boys. Because I was so fat, I could not dodge the ball very well and was invariably, painfully pummeled by the heavy ball. The other boys in class took great pleasure in doing this to me. I always made sure that gym class was the last period of the day so that I would be in the locker when the swim team and wrestling team would be in there changing into their Speedos and singlets for intramural, after school sports. I showered with them and surreptitiously watched them with great desire. It was a very emotionally sick time for me. The loss of my childhood was my first and perhaps most painful loss in my life.

 It was not until I got to Oberlin where my fantasies could become reality, and with my work with an extraordinary psychotherapist, that my self-loathing became a thing of the past and I busted down the door of my dark, terrifying closet like gangbusters. It was a Quaker Puffed Wheat shot from cannons thing. From that moment on I have never been back in my closet and have made sure ever since then that I have been in everyone’s face as a Queerman simply by being authentic to myself. Because my therapist was really involved with the work of Evelyn Hooker whom he idolized (she got the DSM III to remove homosexuality from being a mental illness and perversion. She said that her address to the APA regarding here research was the greatest day of her life.), he taught me to love myself and take great pride in being Gay.  He showed me that I had great gifts to give the world because I had to survive in a thoroughly hostile environment, and he explained to me that he did not have those gifts because he never had to look inside himself to learn how to survive.  He said as a straight man, the world was made for him, whereas my world was taboo and that learning to live in that world gave me insights into myself that he could never have. He told me that I was a great survivor and that I should, by all rights, be dead from suicide. His name was John Thompson, and John and I became very close friends. There was a mutual respect for each other, which I still treasure today.  I believe that John is now dead. I lost contact with him many years ago, but we kept in touch long after I graduated from Oberlin.

 So, my childhood was the first loss of my life. The other biggest loss of my life is my life in the world of HIV/AIDS. I lost over 200 friends, colleagues, and lovers, and worst of all, I have lost my own life. AIDS made me lose my career as a concert harpsichordist.  I was too sick to continue the stress and exhaustion of travelling on tour as well as the stress of the concerts themselves. The loss began in 1995 when I had my first opportunistic infection and was diagnosed with full-blown AIDS. I spent the first seven years of my illness in the hospital in Unit 371, the AIDS unit in Advocate Illinois Masonic hospital. The unit no longer exists; there is no need for it anymore .I was in and out for about half that time with infection after infection including Kaposi’s Sarcoma. After those first seven years, I continued carrying on my career, but later starting in 2005, I began to get sick again and finally had to relinquish my career. This was a great loss for me. I began my study of music at the age of five, the age when I realized that I loved men, which is a really synchronous thing. I was groomed for a concert career as a pianist, but I heard my first harpsichord also at the age of five when my parents bought me a child’s recording called “Said the Piano to the Harpsichord” and I immediately fell in love with the sound of that exquisite instrument. I knew later in my adolescence that I wanted to be a harpsichordist and not a pianist, but I didn’t find my first harpsichord until I got to Oberlin where there was a harpsichord in a practice room.  I sat down to it, played it very badly, but knew that I had to change my major from piano performance to Music History so that I could take harpsichord lessons. There was no harpsichord major yet back then in the mid 1960’s. I had to go to London to Trinity College of Music to study with a great harpsichordist there.  I stayed for two years and came back to Oberlin to finish my degree, and stayed on teaching harpsichord during the second semester of my graduating year 1968, until I went to graduate school to Northwestern University because I could be both a Musicology major and study harpsichord with my greatest teacher Ms. Dorothy Lane who died from cancer many years ago. I began my concert career in 1972 and continued it until I was forced to give it up in 2005. That was a most painful loss for me. It was the center of my life and AIDS forced me to end that part of my life. I continued to teach until 2010, however, on the faculty of the DePaul University School of Music and privately out of my own home. Then when the constancy of infections took over my life, I had to give up my teaching as well. That was yet another loss.

 During the 1980’s the worst loss of my life occurred. My entire Queer family of men died one by one. There were seven of us including me. We were not only the best of friends with whom we spent all our time; we were also lovers for each other. As I said in Part 5 it was Queer utopia with our love making with each other and with no jealousy of any kind. Each one fell to the scourge, and I always, in my concerts, played a “Tombeau” in their memory.  Tombeaux are memorial pieces from 17th century France which were written for great people who fell from life to death.  “Tombeau” comes from the French verb “tomber”, which means, “to fall”.  They are exquisite pieces and I had to program one of them in each concert in memory of my beloved family of choice. It was a terrible loss for me, and I still grieve for them constantly. Often I cry with the pain of it. AIDS is the most terrible thing to hit humanity, and I have to live with it every day of my life.

 There is a terrible misconception about AIDS, which is that it is over. It is certainly not over for me. I live with it every day of my life. In 2010 I was in the hospital every other month with chronic bronchitis and pneumonias. Because of the incessant bronchitis, I was diagnosed with COPD, which I suffer from on a regular basis. I have been septic four times in the past five years, and I get various infections also on a regular basis and have to be hospitalized with each one. Since May, I have been hospitalized every other month again. The last infection caused me to have part of a toe amputated, because the distal bone was shattered into splinters and I couldn’t feel it because of my peripheral neuropathy in my legs and feet, which is severe. I have no surface sensation from my knees on down in both legs, they are completely numb and I have no reflexes. but I have the most excruciating pain deep in my feet. It feels like burning hot coals sewn into my feet while being stung by 1000 wasps. I wear 225 mcg. of transdermal Fentanyl patches to help alleviate the pain and sometimes there is still breakthrough pain when I have to take a large quantity of hydrocodone to alleviate it. I must have banged my foot against something and broke the bone and created a wound, which got infected which I never felt. Then, one day I noticed blood and a discharge on my toe and was running a fever. Jerry, my spouse, and I went to the ER immediately where they didn’t even wait until I got to my room to hang the antibiotics when admitted, but hung a double dose of Vancomycin which dripped into me IV over ninety minutes right in the ER. I was admitted and was given both Vanco and Levoquin for a week until the infection was defeated. It required the amputation, however. That is another loss for me. Now the neuropathy is spreading to my hands, which are becoming numb.

 The latest set back is severe edema in my legs to the point of having to split my jeans to get them over my CROW walker, which doesn’t close because my calves are so big. The CROW Walker is a heavy, black plastic boot in two pieces which fit together and which counter my Charcot Foot so that I can walk. The Charcot Foot is a condition from the neuropathy wherein all the nerves in my foot died including those in my bones softening them so that they all fractured and knitted incorrectly giving me a deformed foot. Three weeks ago I developed severe edema in both my legs, so bad that I had to split my jeans at the seam in order to fit them over the CROW Walker which would fit together properly. I went to the ER again on the advice of my doctor. He thought it may be a heart problem, but after an EKG and a huge blood draw nothing showed up, so we don’t know what is causing the edema. It feels as if the skin on my calves is being stretched beyond its capacity and they have turned bright red. It is just another mystery in my journey with AIDS. My depression is terrible because of all my illness and as I wrote in Part 5, I have had to go back into psychotherapy after three years of being without it.

 There is a powerful connection between my illness and all the loss in my life because of it and my drug addiction. The illness makes me want to use again in order to escape the pain that is physical, emotional, and spiritual. I won’t do that of course, because I know that if I use again it will kill me. My recovery program is strong and I have a great support network with my brother addicts in recovery who take care of me beautifully because they understand the connection between my illness and my addiction. My therapist has a great grasp of 12-Step recovery and understands my dilemma well. He is very gifted, empathic, and quite brilliant. We are very close because we share something, which is all the loss of people to AIDS during the 1980’s and 90’s. He, too, lost a tremendous number of people in his life so he understands my grief and pain quite powerfully. I first went to him nine years ago after I got out of rehab and worked with him for six years when I “graduated”. It has been three years since that time and now I am back there again working hard on my psyche and spirit trying desperately to alleviate the psychic and spiritual pain. It has been loss upon loss and today I am in despair over the truth that it is not over. There will be more as time goes on.

 Jerry and I will be moving when our lease for this apartment is up. We have to find a wheelchair accessible building with an elevator because I cannot negotiate stairs at all, and eventually I will no doubt end up in a wheelchair. I already have a terribly difficult time walking although I can still manage it. It is the neuropathy that is causing the lack of mobility. Fortunately, I can still walk but with a great deal of pain in my legs and feet. Eventually, I will have no mobility at all, and I am prepared for that contingency. I also have a difficult balance problem because of the Parkinsonism. I have to be very careful that I don’t fall. We are moving to a different neighborhood that is closer to my doctors and the hospital so that should I need to go to the hospital in an ambulance, I will go to my regular hospital where my doctor is on staff. Where we live now would require that I be taken to a different hospital that is the closest one to our apartment, and I don’t want to go there. It is a mediocre institution, with which I don’t want to deal with, and I am most comfortable and feel completely safe at St. Joseph’s. I have been there so much that all the nurses on the eleventh floor know me. The ER staff knows me by name and greets me each time I go in, although they don’t like seeing me there. It is a terrible thing that I am so well known in the hospital. In some ways it has become my second home and that is indeed tragic. My life with AIDS is so difficult that I despair over the reality of it being a permanent condition that is only going to get worse as time goes on. Fortunately, I have my beloved Jerry who sees to my needs and I have my support network of addicts in recovery. Without them I would probably be dead at my own hand. They all keep me living the best possible life I can live and I am so blessed to have them in my life. I am just waiting for the next infection and have resigned myself to living with AIDS for the rest of my life. I cannot change that. I say the 12-Step Serenity Prayer a great deal to help me cope with my life. The prayer keeps me centered.

 

            God, grant me the serenity to accept the things I cannot change,

            the courage to change the things I can,

            and the wisdom to know the difference.

 

 I work hard at acceptance, which is very difficult for me. My therapist says that difficulty in acceptance is a basic part of my personality because I am a fighter, having had to learn how to fight to survive from a very young age. He thinks the fighter in me is a very healthy thing indeed. Thanks be that I have such a great network of support and love and, of course, I have my beloved music, which I listen to constantly usually with my earbuds because I feel filled with the music listening that way.  I feel it deeply in my body and spirit, more than if I listen through my speakers which are very good speakers indeed, but the earbuds give me a greater connection to the music. I listen to a tremendous amount of Baroque music, being a harpsichordist, but I also listen to some of the great Romantics such as Mahler whose music is filled with a powerful pathos, which resonates deeply in my soul. He, too, was abused as a child and the pain of that is reflected in his music. I relate to it so well. My music and my support network and especially my spouse keep me alive. I am so grateful for these great gifts in my life. It all relieves the pain of all the loss with which I live, and for that I sing great songs of praise and gratitude to my God/dess, my Higher Power.

Anatomy of an Illness, Part 6

I started psychotherapy again last week.  I have been in therapy on and off with five different therapists since 1964.  I have also had two psychiatrists who monitor my psych meds for me. Psychotherapy has been a great adjunct to my life. My interior journey has been rich, revealing, joyous, terrifying, self-revelatory, and deeply spiritual. All five therapists have been remarkable with each bringing different gifts. One of the finest was a certified Jungian analyst with whom I did analytical psychotherapy working with dreams, my own mysticism, mythology, early childhood abuse memories, and my spiritual life.  We worked through my incest issues, as well as the physical and emotional abuse as a child into adolescence. She is the only female therapist I have had although I do truly believe that Queermen need Queermale therapists. The alternative is a woman therapist who loves Queermen. Catharine, my Jungian therapist, is the only woman with whom I have worked. All my other therapists have been Queermen. I learned a great deal about myself from Catherine. Now I am going back to my last therapist from whom I “graduated” three years ago after seeing him for six years. I saw him for the first time a week before I went into lock-down rehab for thirty days.  When I got out, we began our work together.  That was nine years ago.  I have been clean from all drugs and sexual acting out for those nine years, and I am so grateful for my recovery program and the 12-Steps which have taught me so much about myself, my interior life, my neuroses, my re-living the cycle of abuse over and over again in four long-term relationships all of which were emotionally or sexually abusive. My 12-Step recovery has become my primary spiritual path and for that I am eternally grateful.

There are issues going on around my illness and death now (not just my death, but mostly that of my beloved partner who is six years older than I am,,,,he is 73 and I am 67).  I don’t know how I will manage emotionally, spiritually, physically, and also financially without him by my side.  This is a big issue and has many tangents. It is clear to me that it is time to be back in therapy. My therapist, Bruce, and I share a very tight bond because we both lived through the holocaust of the AIDS death years in the 1980’s and 1990’s, each having lost hundreds of friends, colleagues, lovers, etc. to the plague. Personally I have lost over 200 men from all those categories.

The loss of my gorgeous Queermale family with whom I spent all my time was the worst loss that I have endured not just during those plague years, but perhaps the worst loss of my entire adult life. We ate together, went to movies together, went to the theater and dance performances together, slept together, and we also made love together.  It was a time of death, and the old Gay moral code that one has sex only with one’s lovers and never with one’s friends just didn’t apply anymore. My friends were my lovers. We all loved each other deeply, and we needed to express that love with each other because there was simply no time for that old Gay moral code. We made love, intense love, and yet there was no jealousy of any kind on any of our parts.  It was a Queermale utopia. It was a powerful affirmation of life in the midst of impending, torturous death. The love between us was so deep, spiritual, powerful, intense, and also desperate, because of what was in store for all of us. Six of the seven died agonizing deaths. All of us died, some in agony, some peacefully, but all with me by their bedsides. Some of them I held in my arms and kissed them good-bye as they took their last breaths. I did, in fact, die in January, 1996, but it was not my time.  It was a mistake on the part of the Death Crone. I flat lined during a ten-day coma, but came back to this Earth to live, because I had powerful transformational work to do in the world. I have completed almost all of it now, one of the pieces of that work being the nine-year writing of my book Thoughts of a Tribal Elder: One Queerman’s Journey from the Ashes Risen which was published two years ago. Amazon, Barnes & Noble, and Xlibris (the publisher) are carrying the book both in paperback and e-book formats. The sum total of my work has been the most wonderful, productive, and life-filled work that I have ever known. It kept me alive until this day and will hopefully keep me alive for a long time to come.

Because I was so deathly sick for seven years and have still survived after seventeen years with full-blown AIDS, Bruce, my therapist, and I feel a special bond. He was one of the three therapists/two psychiatrists who diagnosed me with PTSD from my experience with death so closely co-mingled with the rest of my life since 1987 when I was facilitating a memorial service every night and a funeral at the graveside nearly every day for twelve years until my own illness set in. Because of my seminary training and having a M.Div. it was my vocation to take on that role of facilitator. Living each day after my diagnosis with a brutal death staring me in the face was enough to trigger my PTSD. Different things can set off a PTSD flashback to those years and to all the years that I spent in an AIDS unit in my local hospital at the time. I wrote in a previous post about my severe PTSD flashback experience when attending a performance of Larry Kraemer’s The Normal Heart. When one of the two main characters in the play gets Kaposi’s Sarcoma and finally succumbs to it, it called up all the years that I fought KS myself—three years of chemotherapy and a great deal of radiation, which nearly killed me twice.  The chemo did nothing I don’t think but make me deathly sick. Well, perhaps it kept it from metastasizing into my internal organs for which I am very grateful, but it did go from cutaneous purple lesions to my complete lymphatic system. At the play, I began to tremble and cry, hyperventilating and getting faint.  Fortunately, I was with a dear friend who understood what was happening, and he held  my hand tightly as I shook uncontrollably and sobbed quietly with all the grief that I still have inside me for all the people in my life who are dead, and for my own life which is so curtailed because of this disease, as well as living in the unknown every day, not knowing when the next infection is going to set in and whether it will involve hospitalization, or whether the next infection will be my last so that I return to the Source, to my God/dess, and hopefully see all those that I loved who died. I would like death to be like the final scene in Long Time Companion, the film from the Death Years, when everyone who dies in the film from within that extraordinary Queermale family and their tangential friends, all of whom were brilliant, talented men comes back to dance on the beach at Fire Island and they are all hugging the living and the others who died and they are all laughing with all the love present on the beach and all the joy at re-uniting with each other. The beach is filled with beautiful men. That’s how I want my death to be.

I am not afraid of death.  “Been there, done that”.  I did, indeed, die in 1996 but through the grace of God/dess, came back from death to do the work in the world that I had been given to do. I had a powerful experience when I died, an experience I don’t like talking about because it is so personal and was so mystical, and because people have far too much religious/spiritual baggage that they bring to other people’s intimate spiritual stories.  I have told a few people and they trivialized it to the point of absurdity, making jokes about it because they were so uncomfortable, I think. I believe that the only way they could deal with the profundity of my experience was to make light of it. And, although I am not afraid of death, I am, however, afraid of the dying process, of the excruciating pain, of the machines and tubes in my body, having a feeding tube through my nose, intubated, hooked up to monitors, etc. I am most afraid of the pain involved. I am not good with pain (except, perhaps, sexually on occasion) and I already have so much pain medication in me, that I am afraid that my body will have built up such a powerful tolerance to all of it, that all there will be is pain, never-ending pain until my actual death.  I would like my death to be as peaceful as it was in 1996. What I know is that I am nowhere near death yet. There is more work that I still have to do regarding transformation of self for the transformation of others. There are esoteric things I know that I need to teach others.  I don’t know what that will look like, however. Because I am no longer a musician, I don’t know how this is going to work out, but I know that there is core work for me to do, work which humbles me because it is not of my ego, but, rather, of my Higher Power, of God/dess. I am merely the vessel, the conduit, through which the Universal Sprit flows as I bring people together and create community where there was none before. If my ego were attached to the work, it simply could not get done. Such work, if it is to be at all authentic, must come from a deep humility, a place of unabashed no-ego. As soon as I say, “I am doing this”, the work becomes impossible. I must be able to say consciously that I am not doing this, but, rather, that a Higher Power is doing it all. As soon as it becomes about me, all is lost. This was my work as a concert harpsichordist whose career as performer and teacher, as well as recording artist, became my transformational work that touched thousands of lives in deep and profound ways.  As I was a vessel for God/dess, I was able to be completely vulnerable, thus allowing those with whom I came in contact to be equally vulnerable without fear of judgment. When I came to that place of no-fear I lost all nervousness and stage fright before a performance, because I was not afraid of judgment.  If people wanted to judge me, then that was fine, because my ego was not attached to my playing, judgment didn’t bother me, and because of it, my playing became so much more spiritual and musical, easy and comfortable for both me and the audience..

My life is blessed and rich with the love of so many others, and I am so grateful for all those wonderful men with whom I people my life, mostly men from Crystal Meth Anonymous (CMA) who are walking a similar path in recovery as mine.  They search for that place of no-ego, a place of utter humility in the face of the most incredible thing called by most of them a Higher Power, what I call God/dess or The Universal Spirit.  We are all taken care of by that Power.  I can trust that Power completely to take care of all my needs, and, should Jerry die before me I am learning to have no fear, because I know deep in my soul that I will be taken care of.  I must do the legwork to take care of myself, but my God/dess, my Higher Power, will use that work and take complete care of me.  S/he always has since I was born, and I must keep that truth alive, walking in front of me to clear the path for my spiritual growth, whether through grief and pain, or through utter joy and celebration. Sometimes I have grave doubt in the love of that Power for me and the fear sets in, because my faith is shaken.  But, after a little while, the doubt leaves and I am back on my path to peace and serenity. Even with all my illness and physical limitations, life is so good that I am astounded by the juxtaposition of ill health and deep spiritual awareness, of blessing and grace.  Thanks be.

 

Anatomy of an Illness, Part 5

One month ago I had part of a toe amputated. I had obviously banged my foot into something like the sofa and didn’t feel it because of the peripheral neuropathy in my feet, which makes the surface of my lower legs and my feet completely numb to touch, but which provides excruciating pain deep in the foot, like 1000 wasps stinging me and red-hot coals sewn into the bottoms of my feet. I had probably been walking around with all the distal bone shattered into splinters for many months and it got infected, except I couldn’t feel that either.  Then, about 2 months ago, I felt a sharp, extreme pain in that toe, thinking it was new pain from the neuropathy, but a month ago I noticed a lot of blood on the wooden floor and found the wound that had a discharge. The pain finally got so excruciating inside the toe and because I was running a fever, my partner and I went to the ER at my hospital and they said that I had a severe infection and immediately hung a bag of Vancomycin, a double dose that dripped over the course of ninety minutes.  Then I was immediately admitted receiving lots more Vanco IV and adding Levoquin to the mix. I stayed for a week.  Another infection come and gone, except whereas most people get infections, perhaps run a fever and have body aches for a few days while they recuperate at home, I have to be hospitalized for a minimum of a week.  My infections often turn septic.  It’s a whole different world if illness for me than it is for those who are HIV-. My doctor is one of the finest HIV/AIDS docs in the country, but even he does not like to say that any of my many infections are HIV-related.  He was terribly sick himself and was diagnosed with AIDS in the 1980’s.  Now he says it is a disease that no longer exists and we should all be very grateful that the scourge is over.  Well, my dears, it may be for some, but it isn’t over for me and it never will be.

All my infections exist because my immune system is completely compromised, and HIV- people just don’t get as sick nearly as often as I do, and if they do, it is not to the point of hospitalization very often. I thank my God/dess that I have a port-o-cath embedded in my left pectoral muscle from the time of my chemotherapy fourteen years ago. It still works like a charm, and nurses love them because they require one thoroughly painless poke with a tiny railroad spike of a needle  (which really is painless when the nurse accesses it correctly).  That’s all.  No setting of IV’s for medications and painful, invasive blood draws.  Residents hate ports and they consistently put me through a third degree ever visit to the hospital about why I have a “foreign” object in my body when I am not on chemo anymore. They consistently tell me it will get infected and I have to have it removed, which I know is neither true nor necessary.  It is a closed system, unlike a central line or a picline. There is nothing exposed to the air. I know that’s just the normal arrogance of all the residents that I have encountered, but it still offends the shit out of me.  They all think they know everything, because now they are “doctors” and no longer medical students and can order patients around and tell us what to think and what to do fully expecting that the patient will blindly do exactly what they say with no questions asked. They generally talk to patients as if we are children, when, in fact, because I have been living in hospitals for seventeen years, I speak their medical language sometimes better than they do. They don’t believe in collaboration between doctor and patient and still work under a power-over paradigm rather than a power-with paradigm.

Often I know what’s wrong with me even before the residents can figure it out, and sometimes I have had to guide them in their work.  I know when I have pneumonia or bronchitis and I can tell the difference between the two.  I know when I am septic.  I know when I just have a nasty viral infection, or an even nastier bacterial infection instead.  I know when I need to be hospitalized down to the hour. I know about gram stains and the difference between gram-negative and gram-positive bacteria and which antibiotics work better than others against which organisms. I know my tolerance for opiates, just how much I can take without touching my drug addiction and use them sparingly.  Contrary to the myth, me using marijuana to kill the incessant pain in my body is not going to trigger my addiction.  I don’t use enough of it to do that.  I only use enough to alleviate terrible pain. I certainly don’t use it to get high.  Sometimes, I may suck on a little too much sativa cherry candy, or eat slightly too much indica chocolate fudge. When that happens I feel dirty and confused, because I will be slightly buzzed and I really hate that feeling.  I know just how much I need down to a tenth of a gram, and I weigh it on a gram scale so that I am not ingesting too much, but sometimes I slip and get slightly too much cannabis in me. When that happens I get paranoid and think I sound like a fool when I speak. I am very unhappy when that happens, so I am extremely careful about how much cannabis I use.

I have terrible body dysmorphia because of medications, especially the testosterone treatments I was receiving once a week for energy for many years and the synthetic testosterone turned into Estrogen Overload Syndrome, which happens to some men. Consequently, my male body (which was VERY male and utterly beautiful prior to AIDS and especially before testosterone poisoning, I was chiseled and ripped, with a large 8.5” x 5.0” (circumference) penis when it was hard, five inches hanging between my legs when soft, perfectly proportioned in all ways with a perfectly sized head which was large and as wide around as my shaft with a thick gorgeous vein running the length of it when erect, and I have to say that it was utterly beautiful, and my testicles were large and hung loosely low right up until the point of orgasm when they naturally pull tightly against the body. When I lived in New York City in the early 1980’s, my penis was so famous it was cast in plaster and sculpted in bronze. The plaster caster still, as far as I know, has it in her possession. The sculpture sold for a tidy sum in a SoHo art gallery in Manhattan in 1982. I am no longer endowed to that extent.  In fact it is now only the size of a large button mushroom. I know that most readers will think I am bragging about my pre-testosterone body, but I am not.  I am simply stating objective facts. In that objectivity, I no longer have that wonderful body part in the same way that I did and I am no longer chiseled and ripped. The testosterone has seen to that. It completely changed my sexual characteristics and the shape of my body generally.

I have calculated out the number of men with whom I have had sex in my lengthy forty eight year sexual career starting in 1965, and calculated out by averaging the number of encounters per day over the years, five to ten times a day, for instance with as many different men as possible in the early 1980’s alone which went on for three and a half years in New York City, which comes to a rousing 10,320 men in just the first three and a half years of the 80’s alone and doesn’t even consider the 60’s and 70’s that I came up with a figure of 20,000 (!) men whose bodies I have known. Sometimes the sex was transcendental, very Tantric (I had three three utterly beautiful men in the 1970’s who were Tantra adepts in the spirituality and sexuality of that ancient Hindu path), and sometimes it was a quick passing encounter that could only take ten or fifteen minutes at the Hudson River piers in the West Village, or the trucks in the meat packing district, or pornographic movie theaters, or men’s restrooms, or back rooms of bars, or bath houses all of which only allowed for that quick fix to my addiction when I would be jonesing for sex. I much preferred, however, to bring a beautiful man back to my bed and spend hours in exquisite, powerfully intimate sex. Often when the sex was, indeed, transcendental and lasted for many hours, I would see those men more than once and we developed close friendships, because the spirituality of the sex was so Seraphic. All of those friends, some of them very dear, are all dead now. Sex was my life’s work. Outside of my musical career performing and teaching it was my mode of communication; it was my vocation.

It is perfectly in keeping with my former sex life that I have AIDS.  I am not at all surprised.  I never was, not even at the time of diagnosis. I realize that I am blaming myself for contracting HIV, but the fact is that if I had not fucked with some 20,000 men indiscriminately, had I not objectified the bodies of all those magnificent men at the pinnacle of my own sex addiction, but treated them with the respect I stupidly thought I was giving myself, I may just have avoided the virus. I obviously was not respecting myself, what with the ways in which I treated my own sexual body. I do not feel guilty for having possibly given the virus to countless men (after all, I had no idea I had a deadly virus in me).  The other run of-the-mill STI’s were treatable, e.g. gonorrhea, syphilis, chlamydia, HPV, and giardia to name the common ones and so were not of any great concern. I had them all in the 1970’s and the medical community feels very strongly that having had all those infections contributes greatly to presenting with HIV/AIDS.

No one knew had a deadly virus in us…none of us in that sex crazed, drug-ridden world knew we were sick, but I don’t much like that I treated so many thousands of men as pieces of meat with which to be played, not even with whom” to be played, but “with which” to be played—and isn’t that amazingly dehumanizing? I am guilty of having treated men like objects and not at all like Sons of God/dess, but I do not feel guilty for having infected them, and no one can make me feel that, though many have tried. I cannot beat myself up over something of which I had no inkling. I cannot feel guilty for something of which I was completely unaware, as my thousands of Queer brothers who lived in the urban Queer centers of the US were completely unaware. I lived in a sex and drug culture, where sex was our modus operandi and cocaine was the drug of choice. It was all we ever thought about and was a social priority blocking everything else out. It was the foundation of the large majority of Gaymale life in New York City where I lived in the early 1980’s and, I expect, it was so in most urban areas. I do, however, take full responsibility for my disrespectful and inhumane behavior, and if I could make amends to them all I would, but most of those 20,000 men are dead and all I can do is live my life now, thanks to the grace of God/dess and recovery from sex and drug addiction, to the very best of my ability. Living my life with compassion and respect for the other is the best thing I can do.  Treating my brothers as full human beings and not as receptacles of my sexual energy is all I can do. It is a living amends.  It doesn’t satisfy me, but it will have to do, because that’s all that is available to me now.

My life now, even with all its hardships, is good and wonderful, rich with loving people and caregivers like my medical team and my partner Jerry. I have to trust that even with the way I lived my life in the past, that being as one who objectified other men for his own pleasure, life now is fabulous and that previous mode of living is gone for good. I am thrilled to say that I have been clean and sober from all drugs and all sexual acting out for the past nine years, and I intend to keep it that way. 12-Step recovery is a most miraculous spiritual path. I honor my brothers as the full human beings that they are, giving them all the respect that I can and, for those in my inner circle, all the love that I can. I have a partner who loves me beyond the beyond, who would do anything for me and who accepts all that is limiting for me.  He accepts what has happened to my body with no questions asked.  He takes exceptional care of me, not like a neurotic care-taker who does it for self-aggrandizement or out of some deep need to feel needed, but rather as one who loves desperately and can do nothing else as a great expression of that love. Sometimes it is hard for me to accept the help because in my addict mind I am invincible. I still occasionally like to think that I can do everything by and for myself with no need for assistance of any kind. But, the fact is, I am not all-powerful and cannot do this life by myself.  I cannot work my recovery program without the help of my fellow addicts. I need the help and love of others (not just my CMA brothers but also my families both original and chosen) to get me through what is a difficult way of living. Jerry works hard at making my life as simple and as stress-free as possible, because HIV thrives on stress and chaos. He keeps it at bay as much as possible. He doesn’t do everything for me, because he knows that the things I can do for myself I will do without his help, but if his help is needed, it is right there just waiting for me.

Life is good, and I am blessed beyond belief. Everything will be fine.  Everything will come out OK. All I need is complete faith and trust in my Higher Power, my God/dess who will take care of me as I have always been taken care of.  I have never been rich (which is just as well, actually) but I have always had enough money to have a roof over my head and food on my table and to pay my few monthly bills with some money left over for a meal out or a movie occasionally. Everything will be OK no matter what. In the words of Julian of Norwich (a 14th-cetury English Christian mystic), “all will be well, and all will be well, and every manner of thing will be well.”

The Demise of Queer Culture

The greatest threat to Queer culture is the desire of so many LGBTQ people to “fit in” to be “just like them”, to “not antagonize the straight community”,  to “not make any waves”, to “not put any fear of Queer people in the hearts and minds of the straight world.”    Why can’t we get married, just like them and have all the rights that they do?  That’s a great question, and one that should be on the hearts and minds of all LGBTQ people.  Indeed, why can’t we marry?  After all, we are just like them, right?  We want six-figure salaries, a large 3 bedroom condo overlooking Lake Michigan, or the Hudson River, 2 dogs (preferably golden retrievers or 2 pugs, or, perhaps one of each), belonging to the best gym, having season tickets for the Lyric Opera (preferably in the Dress Circle or a Box) or the Chicago Symphony Orchestra (preferably in the first ten rows of the orchestra level or the first 15 rows of the first balcony or both), shopping only at Whole Foods and Trader Joe’s for groceries, having formal dinner parties with only the best china and silver service with Baccarat crystal water glasses, or Sunday brunches with the special brunch china and cheaper water glasses.  You get the  picture.  We are destroying whatever sense of community there is left of a distinct Queer culture.

Quite frankly, I wonder when LGBTQ people will come to the proud realization that we are not like straight people, and I, for one, celebrate that difference with great joy and jubilation.  We are distinctly different from them.  We have our own culture and our own aesthetic.  Moreover, we have our own history, our own spirituality that is indigenous to us that comes from time out of mind, our own mythology, our own arts, our own rituals and symbols, our own anthropology, our own psychology which comes from our own collective unconscious which is THE fundamental thing that sets us apart.  Our collective unconscious comes from centuries of violence against us that was/is physical, emotional, psychological, and spiritual, and the worst violence came from and still comes from the Christian church and the Muslim mosque,, which used and still use a few Biblical and Koranic verses to justify their own hatred and violent bigotry..  We have experienced pogroms against us, burnings at the stake and rapes with red-hot pokers, genital amputation and mutilation, beatings, and unspeakable torture.  Our unique spirituality that is intrinsically ours was considered as dangerous to the patriarchal, heterosexist church as the women who were called witches during the massive witch hunts of the late 15th century Spanish Inquisition under Ferdinand II of Aragon and Isabella I of Castille, throughout the rest of Europe, and also in colonial America. We were burned at the stake with the women, used with bundles of twigs (called faggots (!) of wood) as kindling for the fires.  Ours was a spirituality of the Earth and, in many cases, of the Mother, a spirituality that was matriarchal. This was the same as the spirituality of the women, the so-called witches.  It’s modern equivalent is Wicca, a powerful Earth spirituality and a spirituality of the Mother and the moon, which had little use or need for the men in the church hierarchy. Gaymen were seen as male witches, and so, were burned at the stake along with the women.

Queer spirituality is one of equality and consensus, of power with rather than power over, and of the circle, the Dharma wheel, which is ever turning with no beginning and no ending.  More importantly, it is a spirituality of unity with the Divine, of non-dualism, rather than that of the cross, which is a thoroughly hierarchical symbol and one that is dualistic with its horizontal and vertical beams, which clearly have a beginning and an ending. Our spirituality is sex-positive and involves the all-important body, which is thoroughly antagonistic to the sex-negative, body-mortification spirituality of Christianity.  Mortification of the flesh is still prevalent to a great extent in the spirituality of modern Christianity, which is most definitely sex-negative. This was engendered from the still strongly held Christian theology of St. Augustine of Hippo. To put  it into the simplest of terms, Augustinian theology says “body bad, spirit good, and never the twain shall meet”.  This is the polar opposite of indigenous Queer spirituality and Queer Liberation Theology which says that both body and spirit are, indeed, very, very good, ands that our sex celebrates that truth as well as the deeper truth of the body/spirit connection that is inexorable. Our uniquely Queer spirituality is one of both/and rather than either/or.  It is rooted in the complete destruction of dualism and the embracing of a mutuality that is thoroughly feminist.

Out collective unconscious coming from all those centuries of pain has produced magnificent Queer art, Queer ritual and symbol, Queer mythology, Queer feminism, Queer sexual mysticism wherein there is a total blending of body and spirit between the two or three people engaged in the sex act, wherein the meld between them is so powerful that one cannot tell where the other person ends and we begin. Such passionate and deeply spiritual sex is the movement of Tantra in the world.

There are those among us, the LGBTQ community, who would take us back to a mind set that is pre-Stonewall.  If Stonewall was nothing else, it was an action that put an end to shame and invisibility, of hiding in plain sight.  It ended the isolating self-hatred of the closet. It made a most important statement regarding not just our sexuality, but even more importantly it made a most important statement regarding sex and our birthright for us to be utterly sexual in celebratory and visible as a blatantly sexual people, a people of possibility, a people of no-shame.  More than anything else, Stonewall gave us a visibility and authentic presence in the world, a place of identity where before there was none. Assimilation, however, takes us to a place of non-identity, of effacing our magnificent and unique culture in all its aspects, and of the end of the celebration of sex as the good, powerful, and spiritual thing that it is. That alone, just the change in attitudes from dropping the shame to engaging riotously in unabashed and unashamed sex, opened up the accessibility of our collective unconscious which, given the right circumstances, can influence our sexual play.

Assimilation smacks of Gay shame and a powerful unconscious internalized homophobia.  It is not any different than the words “straight acting, straight appearing” in Gay personal ads.  Why would I want to appear straight? Why would I want to act straight?  Acting Queer is a most beautiful thing and thoroughly authentic to my identity as a self-loving Queerman.  There is a great deal of difference between being Gay and being Queer. For me, ”Gay” is an adjective that defines what I do in bed with another man.  “Queer” is a noun that identifies who I am in my entirety. Being simply Gay allows one to assimilate, to blend in, to be “just like everybody else”, that is, to be invisible. Gaymen often say, “I am so much more than my sexuality” or “I don’t define myself by my sexuality”. To be Queer requires that one identifies one’s Queerness as a core definition of one’s self, as one who is connected to the Queer collective unconscious, as one who understands completely that everything we do, everything we say, all our relationships, our livelihood, our spirituality, our gestalt are filtered through that core definition as Queer.

Quite frankly, I don’t understand heterosexuality at all.  A male/female coupling completely baffles me.  That always astounds straight people who truly believe that one is born heterosexual and chooses to be Gay at some point in one’s life, and that everyone naturally understands heterosexuality. For Queer people, that is not at all the case, not ever.  Because I don’t understand straight relationships, why would I want to act like them?  I also find most straight people, especially straight men, quite boring, actually.  There is little if any color, any majick in the straight world, particularly the straight male world. I cannot define for anyone but myself what it means to be Queer, to be Queer acting and Queer appearing, but I know that I am because everyone I meet immediately knows that I am Queer without me saying a word.  I wear my Queerness on my sleeve like a badge of honor.  If there were a pill that I could take to make me straight, and a person in power says “take the pill or die”, I would choose death without any question. It took me far too many years to find my Queer myth, and I am not about to give that up, just because so many of my brothers and sisters want to assimilate. I am deliriously happy as a Queerman with a thoroughly Queer culture embedded in me. Why would I want to change that?

Finally, I have to state quite clearly, that one need not necessarily be homosexual to be Queer.  In fact, I have a number of dear straight male friends, and even my brother, who are utterly Queer.  They relate to Queermen with no trepidation, relate to women with an extraordinary respect and are often themselves feminists, can feel their feelings deeply and express them in authentic and powerful ways, have a deep spirituality, are thoroughly empathic in their relationships, and have not one drop of macho in them.  My friends Jay and Boris, for instance, both straight men, are utterly Queer and I love them both beyond the beyond.  As I said, my brother, too, is a straight men who is beautifully Queer. They all have utterly Queer sensibilities. The only thing that separates them from me is that they don’t have sex with men. Big deal!! They are all magnificent men who would stand by me no matter what.  In many ways they “have my back” more than a great many Gaymen I know who would rather see me out of the community, even as a Stonewall veteran, than claim me as one of their own. And then, there is the extraordinary community of Queermen with whom I surround myself.  They keep me alive and filled with gratitude that after coming out as Gay in 1965, I found my Queer myth in my early 30’s and have been a powerful Queerman ever since. For this, I thank the Spirit of the Universe that watches over me and keeps me on track with my sexuality, that guards me and keeps me safe, and that tells me that, in the words of Julian of Norwich (14th century English mystic), “all will be well, and all will be well, and every manner of thing will be well”.

Anatomy of an Illness, Part 4

Last night I went to the theater and saw Larry Kramer’s play “The Normal Heart”. I saw it when it was first produced in New York in the 1980’s during the height of the AIDS War when we were dying like flies on flypaper. It is a great piece of theater, especially the second act the writing of which is stronger than that of the first act. The cast was just OK during the first act, with Ned (the central character) shouting like an enraged madman throughout most of it. I have the feeling that Ned is Larry Kramer’s biographical self.  He was (still is?) one of the angriest Queermen alive and was enraged by the closeted workings of the Gay Men’s Health Crisis in New York City in the 1980’s. Unlike the first act, in the second act the cast ripped my heart out. The acting was powerful and spot on and Ned was a much more three dimensional character, but I think that’s because they had better material with which to work, more visceral and packed with an emotional punch that left the audience breathless and hushed at the end.  There was only one curtain call because the audience was so shaken by the end of the play. It is important that the play be experienced as often possible so that the history of our holocaust will be seen within the context of our lives now, and because we must never forget what happened politically.  Everyone should see it who can.

I was fortunate to go to the theater with my dear recovery sponsee, because I had terrible PTSD flashbacks to my own battle with Kaposi’s Sarcoma (KS), the disease from which Felix dies at the end of the play. I flashed back not just to all the death around me, but to my own journey with the disease in the 1980’s and 90’s, having my first opportunistic infection starting with  Herpes Simplex Encephalitis when my entire brain was covered with Herpes lesions on Christmas Eve 1995 when I slipped into a hard come from the disease. That was my AIDS-defining illness. I have been diagnosed with severe Post Traumatic Stress Disorder (PTSD) by three psychotherapists and two psychiatrists because of all those year of living daily and nightly with death, deaths and funerals, which I facilitated during each day and memorial services each night for twelve years every day and every night and it was inexorable. For twelve years, seven to ten men died in one AIDS Unit alone each day. I fought in a terrible war, the AIDS War, and died once and came close to it uncountable other times living in the trenches of one of the most deadly wars in Queer history. The play brought the War back powerfully to me. I lived it all over again during the course of the play. Felix was made up with purple lesions visible on his neck, arms, and face. His make-up looked exactly like real KS lesions. In the play, we are to understand that Felix dies from KS, which is fatal if the lesions hit the internal organs, particularly the lungs.

Fortunately, my KS never did that. It moved from being cutaneous (skin lesions) to being lymphatic, which caused such edema in my legs and thighs that I had to slit the seams of my jeans from ankle to thigh in order to get my legs into them. I could not get my feet into my shoes either because of the edema, except when I had to force them onto my feet in order to go to a doctor’s appointment or for my three-year chemo therapy treatments, which only made me sicker to the point of death because of the Taxol and Bleomysin that I received. I was in the ICU four times because of the effects of those drugs. Eventually, two chemo agents that were most effective were manufactured and distributed. They were called Donoxaume and Doxyl, both of which attacked only the KS cells and not the healthy cells of the body. They still had the most terrible side effects, though (really, they were not “on the side” at all; they were simply the effects which were very painlul and which produced severe anemia requiring a number of transfusions). When those drugs stopped working is when the oncologist tried Taxol and Bleomycin, both of which landed me in the ICU dying from those poisons. I pulled through the chemo reactions and stopped all chemotherapy as a result. I thought that if I were going to die from this disease, I wanted to have a good quality of life, which the chemo was not allowing me to have. I thought that it was better to have a good quality of life then to be deathly sick and non-functioning from chemotherapy. As destiny would have it protease inhibitors appeared in our lives, and the KS started to go into remission almost immediately upon the first dose.

It was not until my viral load started  to become undetectable that the KS not only began to go into remission, it went into complete remission in 2002 and I have been free of it since then. When I get edema from my mild kidney disease or from one of my medications I get frightened that the KS has re-surfaced. It cannot possibly do that with my T-Cells being 440 with an undetectable viral load, but there is still the instantaneous fear that the KS is back. I live in fear of illness a great deal. My lungs are particularly susceptible to pneumonias and bronchial infections. In 2010 I was diagnosed with COPD because of the chronic bronchial infections.  During that year, I was hospitalized with lung infections every other month for that entire year. I find that I now become short of breath and have a hard time breathing after walking just one block.

When I am sick, my neuropathy gets worse exponentially and there is break through pain even with all the Fentanyl I use in time-releasing skin patches. Fentanyl is a powerful opiate and I wear 225 mcg. of the drug, which I change every 72 hours. There is no psychoactive response for me, although most people get very high from such a massive dosage. It doesn’t do that to me at all. It is a great painkiller except when there is break through pain.

I have been in physical therapy for the past three months working on regaining balance and also strength in my quadriceps, which are so weak I feel a muscle burn after walking one block. This is from the Parkinsonism. Because I am winded after just one block my doctor is sending me to a cardiologist to see if I need a stress test, which will have to be chemical because I can’t walk on a treadmill wearing my Charcot Restraint Orthotic Walker (C.R.O.W.) for my Charcot Foot. This condition comes from severe and very long-term peripheral neuropathy in my feet, which began in 1991 and has continued to get worse and worse over these many years. The nerves in my feet have all died, both flesh nerves and bone nerves, and all the bones softened and broke, healing in a way that deformed my foot. The CROW makes my foot and ankle rigid when I walk and I cannot walk outside without it. I don’t wear it in my home because my TEVA sandals seem to support my foot, and there is little pain when I walk around the apartment. When I am ill the neuropathic pain, however, no matter how much pain medication I take, is unbearable. It was so bad during this past lung infection, I could only cry from the pain.  It felt as if my foot were in the torture boot from the Spanish Inquisition and as if it were being crushed. It felt as if my foot were being amputated without anesthesia and as if 1000 wasps were stinging me.

One of the things I do to lessen the pain is use medical marijuana.  It is legal in Illinois now, but before the legalization of this miracle plant and because I work a drug recovery program that only allows pain killers prescribed by a doctor, I asked my doctor many months ago that if marijuana were made legal for medical purposes would he prescribe it for me and his answer was “absolutely”. I don’t smoke it, though, because that would make me high and that would make it recreational. I also hate feeling high. I don’t smoke it, bus I do  eat it in the forms of fudge bars (indica) and hard cherry candy (sativa). That method of getting it into my body makes the  pain less and that’s wonderful. I also make my own body patches with hemp oil for absorption into the skin over an eight-hour period. I put some coconut oil on a band aid (coconut oil is absorbed into the skin quite quickly) and then put a tiny amount of hemp oil the size of a half a grain of rice on the band aid. It makes a timed-release patch much like my Fentanyl patches which time-released over 72 hours. It not only lessens the pain tremendously, it also helps alleviate the rigidity in my knees from the Parkinsonism. The last time I saw my neurologist she said, after examining me, that the rigidity has increased and my balance difficulties have gotten worse since my previous visit. There is also more cogwheeling in my elbows. My gait has changed for the worse, my posture has gotten quite terrible, and my left hand has more tremors in it than it had.  My internal systems, e.g. my gastro-intestinal system and my respiratory system, are atrophying. All these things happen with Parkinsonism.

Growing older as a Person With AIDS is a terribly difficult thing. The medical profession has no precedents for it and is stumped regarding how to deal with us who are the walking ill.  I have been living with HIV now for thirty years and with full-blown AIDS for eighteen years, and I am a living miracle. Like a dear friend of mine sings about his own battle with AIDS as he ages and defeats death again and again and again, I, like he, am “a medical anomaly”. I live with infection after infection, with hospitalization after hospitalization generally three months apart and the infections are usually in my lungs. I have met the Death Crone intimately. St. Francis of Assisi called her Sister Death, because Death was his friend and companion with no fear of Her on his part. He knew that Death was simply a natural part of life. I met Her personally having died during the 10-day coma from my first opportunistic infection 1995-96 and coming back from the dead to do the transformational work I was given to do and, for the powerful growth of my spirit as I work and I live in 12-Step spirituality every day of my life. I experience 12-Step spirituality every waking minute. It is a spirituality of compassion, mindfulness, and loving kindness, a spirituality of living in the moment which is something every major spiritual path of the world seeks to do. It is a spirituality of no judgment and no back-stabbing, but is, rather,  filled with an ineffable love.

I know that I have been living on borrowed time and expect that I will continue to live for many years to come, but living with this virus over such a long period of time deteriorates the body something fierce and mine is no exception. I am 67 years old, but I have the internal body of an 80-year-old man. My doctor, one of the finest HIV doctors in the country, is treating me as if I were a geriatric patient. At the rate of disability that is happening to me, it is a good bet that I will be in a wheelchair or one of those electric scooters within a year. Because Jerry and I are aware of this possibility, we will be moving into a wheelchair accessible apartment building when our current lease is up. Our building has three steps descending into the lobby from the sidewalk, and that makes it impossible to have a wheelchair here.

We will be moving to Lakeview/Lincoln Park in Chicago and I am excited about that. The neighborhood has everything one needs within a few blocks of the building we are interested in–cafés, restaurants, and a Gay-owned independent bookstore with a fantastic LGBT section, a great movie theater that shows art and independent films, a Walgreens, a branch of my bank (there are not very many of them in the city) located two doors east of the building, plus lots of independent Gay-owned shops, Lincoln Park, and the Lakefront. The neighborhood is wonderfully diverse with an enormous Gaymale population. I am also anxious about moving, because I am always anxious about moving. It paralyzes me and I have to have others do most of the work. This comes from my childhood when we moved ev;dry year because of my father’s jobs or lack of them. We always had to downscale and I was in a different school district every year, uprooted from friends and teachers.  There was no stability, and this has stayed with me into adulthood.  This time we will have movers to move all the big furniture pieces and Jerry and our friends will move boxes and small pieces of furniture. I can’t possibly help with the move. I can’t lift anything at all or do any of the heavy work. There are so many sober friends who will help us; even our doctor (we have a family physician) said he wants to help because he thinks the move is so important for my physical and psychological well-being. He is such a wonderful man, Queer and very beautiful, brilliant, compassionate, empathic, and he sees me as part of his extended family. He loves me a great deal, as I love him. Todd has been my doctor for ten years, and he takes incredible care of me.

With all the physical limitations I have and the psychological and spiritual difficulties as a consequence of the physical difficulties, I am still astounded at how wonder-filled my life is, how rich with all the love and support I have around me, how much my creative energy is flowing, how my love for Jerry grows stronger and stronger with each passing day. I thought it was strong two years ago.  Little did I know. All I can do to maintain my perspective during my life with this illness is the 3rd Step of the 12-Step program: “We turned our will and our lives over to the care of a God of our understanding (my God/dess) praying only for the knowledge of God’s will for us and the power to carry that out.” That’s all I need and I work very hard “turning it over”, doing the legwork of physical therapy and medications and taking care of myself to the best of my ability and then leave the rest up to God/dess in Her infinite wisdom. I am blessed, indeed.

Anatomy of an Illness, Part 3

Below is a quote from a posting on a 12-Step Gratitude Group on Facebook.  I wrote it August 21, 2013.

Tonight I am trying my damnedest to work the Third Step and the Serenity Prayer of my Crystal Meth Anonymous (CMA) program. Tonight I am obsessed with death and the slow agonizing road to that never-final end (I will be back!) Tonight I think about wheelchairs and massive life-changes, and, of course, chronic pain, which I don’t have to think about, I just have no choice but to feel it every day throughout my waking hours.  My sweet Jerry keeps talking with me about acceptance and living life on life’s terms, and I’ll be damned if I can do that right now. I only feel the terrible sadness that comes at the beginning of the end of things. I try to say “thy will not mine be done”, which is something I learned to do in my CMA program.  Knowing in my heart and mind that this illness has nothing to do with my will, but how I live with AIDS is definitely my will.

Tonight, I would just like to have a huge lotus on which I can sit in serenity as it floats down the river of my life, sometimes gently and sometimes bumpily and the natural flow takes me into an estuary and there is illness, but then the tides always take me out again and back into the flow of the river that is the Dharma Wheel. Tonight, I cannot say the Serenity Prayer and have it mean a thing, and the Third Step Prayer means nothing to me at all. The only thing that gives me hope, right now, is my CMA family and my beloved husband Jerry, who works a program like no other I know. The men I love at the Sunday and Monday night meetings know who they are and you should know that the two things I feel grateful for tonight are y’all and my sweet Jerry. THERE, I finally got to some gratitude. That was work, but getting here is a blessing! Thanks for letting me share. It was a good meeting. I’ll keep coming back!!

 Honestly, I don’t know how I would get through this scourge of a disease without my 12-Step spirituality, which I achieved by getting a sponsor, working the steps, and going to meetings and (I would add) be part of the fellowship. It is a spirituality of such Amish-like simplicity, and simultaneously such exquisite power, such undeniable truth and such continuity that I can apply it to any spiritual path I wish at any time and all those paths make so much more sense to me.  It is as if I can find the core of each path, be it Buddhism, Taoism, Hinduism, Christianity, Judaism and Queer Spirit in the fullness of 12-Step spirituality. 

Today I am exhausted.  I went to the grocery store with Jerry at about 1:00 and it wiped me out.  I slept for a good part of the afternoon and then watched “Chariots of Fire” which is a film I have not seen since its opening in the early 1980’s.  It is a magnificent and true story with equally magnificent men who are the British running team in the 1924 Summer Olympics in Paris.  Ben Cross is a very beautiful man with the body of Adonis.  Somewhat muscled in the chest and abdomen but not overly so, just sort of a normal, naturally gorgeous body.  It is an inspiring story and an exquisitely done film.  The English have a way with films about their own country, either true stories, or stories of the great books by the Bronte sisters or Jane Austin for instance, classics really.  In any event, I feel terrible all over my body right now.  I am fatigued to the point of overall body pain, which makes me very emotional.  I take so many psychotropic drugs for depression, anxiety, and bi-polarism, and sometimes my grief, which colors so much of how I react to films, beautifully played great music, and even television, is overwhelming even with the psych meds. left over from the AIDS holocaust.

It is not so much the loves of my life—my friends, colleagues, acquaintances, lovers, and my entire Queermale family of seven Queermen with whom I spent most of my social and domestic and sexual life for many years, but grief over the loss of my abilities to function properly in the world. I have lost my ability to walk more than three blocks without tremendous pain and exhaustion, my ability to sleep through the night or even go into REM sleep when I do actually sleep for about four hours a night with many naps throughout the morning and early afternoon until about 1:00 PM when I get some energy for physical therapy after which I am exhausted again.  My initial PT sessions were so difficult, working on strengthening my legs, which have atrophied terribly, that it took me two full days to recover from the effort.  Now, because my legs are stronger, PT is not as difficult. My Physical Therapists are so wonderful with me, understanding my limitations and my pain threshold (which is very low) doing certain things, that they really tailor their skills to my particular needs regarding muscle burn and fatigue.  Last week, the therapist I was with did certain exercises with me and they helped so much, that when I went back for my second session that week with another therapist I insisted that we do the same routine that I did with Terry the session before.  Today I can get in and out of a chair or a car with far less pain in my knees and legs than I have been prior to the PT. I took a nasty fall on the sidewalk about three weeks ago and fiercely tore my right shoulder rotator cuff.  Fortunately, there were no broken bones, just terrible soft tissue damage.  My PT and I are working to alleviate the pain from that.

It was both my neurologist and primary care physician (HIV doc) who told me to go into PT.  The neurologist says that it will help the Parkinsonism tremendously and my PCP says it will give me an overall sense of well-being.  It has done all of those things.  My joints are getting rigid from the Parkinsonism, but I am using hemp oil on a band-aid with solid (room temperature) coconut oil spread very lightly on the gauze pad and then the hemp oil gets put on that and the whole thing acts like a dermatological patch, like a stop-smoking patch, the hemp oil getting soaked into the skin through the coconut oil (which absorbs quickly and is in most sun screens and tanning lotions). Coconut oil is also in many cosmetics. So, that absorption happens with the hemp oil and the hemp loosens my rigidity and helps me get in and out of chairs and cars more easily.  Hemp oil contains only CBDs, not any THC, so there is no psycho-active affect. It also alleviates some pain, although it is my ingestion of cannabis fudge with a high grade and high concentration of THC from cannabis indica that really relieves the neuropathy pain in my feet to a great extent.  The problem with THC is that it is a soporific and makes me even sleepier. There is a cherry candy, which only has cannabis sativa in it, which is not sleep-inducing and which I suck on during the day to help alleviate the neuropathy pain when I am awake. About a year ago, I asked my doctor that if cannabis were made legal in Illinois for medicinal purposes, would he prescribe it for me, and he said absolutely he would. Well, now it is legal in Illinois and I am using it.  It doesn’t interfere with my drug program, because we say that we can use narcotics for pain if prescribed by a doctor, and I am following doctor’s orders.  It is not toxic and far better for me than Hydrocodone, although I do use 225 mcg. of Fentanyl every 72 hours. Also, I don’t smoke cannabis.  If I smoke it the psycho-active affect is so powerful that I can get easily triggered regarding other drugs.  I make sure to use only a specific weight of fudge which I weigh on a gram scale and only two squares of cherry candy, otherwise I get high from both of those (I cannot get high from the hemp oil) and that is not what I am using it for.

I am beginning to lose important parts of my life because of these illnesses and infections, which are ever present in one form or another.  I have been sitting on the Steering Committee of Oberlin Lambda Alumni (OLA), the Queer alumni group at Oberlin College. I sat on the first SC back in the 1980’s when it was founded, and because of my history as a Queerman at Oberlin when I was a student I have a tenured seat on the Committee.  I’m afraid that the coming meeting in September might be my last. The meetings are, in themselves, quite exhausting even without my medications.  I am afraid that I will fall asleep during the morning session, but that doesn’t appear to be a problem for either of the co-chairs.  I suspect I will become like a penitente and flagellate myself for not being able to stay alert and awake during our work at the September meetings in Oberlin when we do our important work for the Queer student body.

If the Parkinsonism had not escalated, I would not be so sick and in such constant pain.  Parkinsonism is not Parkinson’s Disease.  The Disease is organically caused and occurs because of an unnatural lack of Dopamine in the brain.  Parkinsonism is caused by external causes, including the long-term presence of HIV in the body.  One of the primary causes is brain trauma with the Parkinsonism developing years after the fact. My first opportunistic infection, which was my AIDS-defining illness, was Herpes Simplex Virus Encephalopathy at which time every millimeter of my brain was covered in Herpes lesions and which put me into a 10-day coma. That was during the period of time between Christmas Eve and into January of the new year 1995-96.  The Parkinsonism developed in 2002.  I have all the classic symptoms of the syndrome. Parkinson’s Plus Syndrome (PPD) is another name for Parkinsonism: tremors, bradykinesia (extreme slowness of movement), falling, multiple system atrophy, rigidity, and loss of legible handwriting to name a few (Jerry writes anything I have to hand write such as checks, state program forms, etc.).  I have all these symptoms.  There is no cure for the illness, and there is little medication that works to alleviate the severity of the symptoms.  Cardidopa/Levodopa (Sinemet) used for Parkinson’s Disease may work initially for Parkinsonism, but the efficacy of the drug wears off with time. The medication no longer works for me, although it did initially.

PPS plus the chronic infections from a compromised immune system sometimes puts me into a state of despair, because it all escalates over time. It is during those times that I have to strongly work my 12-Step CMA program and say the Serenity Prayer over and over again like a litany.

God, grant me the serenity to accept the things I cannot change,

            The courage to change the things I can,

            And the wisdom to know the difference.

I also work the 3rd step really hard.

We made a decision to turn our will and our lives over to the care of a God of our understanding.

Working Step 3 is, for me, a difficult thing to do.  It requires a tremendous amount of trust and faith that there is, indeed, a power greater than myself (Step 2), what we in Recovery call our Higher Power.  My Higher Power has always provided for me.  I have never lacked for food on my table or a roof over my head.  I have never been rich, but I have always had what I need.  The richness in my life comes not from money, but from my Recovery work, my sober friends, my sponsor, my brother, and, of course, my beloved Jerry. 12-Step work is about relationships, making them healthy and fulfilling. My life, except for my physical limitations and the chronic pain, is really quite wonderful.  It is rich and colorful and filled with the natural drama of living.  Some people have said that I am a drama queen, but I don’t believe that we can live life to the fullest without some drama, especially in our relationships, our work, and our play.  Sometimes in singles ads in the Gay press, the ads say “no drama”.  My hunch is that they say that because they have a tremendous amount of drama in their own lives and don’t know how to accept it as normal.  Life is dramatic!!!  If it is not, it is not worth living, and I intend to live my life to the best of my ability.  I love my life, even with the limitations and the pain and the uncertainty about the future of my illness.  Life is good.

Anatomy of an Illness, Part 2

Just as what happens to many of us who have been living with the disease for thirty years and are still alive to talk about it, I have infection after infection in various parts of my body (I have a chronic eye infection in my right eye about every other month that requires antibiotic/steroid eye drops, but that’s the least of it) and, although I’m only 67 years young, I am dealing with geriatric issues, such as advanced arthritis, that an 80-year-old man might expect to develop.  I am also dealing with AIDS-related Parkinsonism, something that develops many years after severe brain trauma, which I experienced when I went into a ten-day coma in 1995 from Herpes Simplex Encephalopathy, a coma in which I legally died, but from which I miraculously came back to life.  Every millimeter of my brain was covered with Herpes lesions, killing many of my neuro-pathways and atrophying part of my brain.  This was my AIDS-defining infection. The Parkinsonism is escalating now and I am becoming more and more physically and psychologically challenged. My life with AIDS and all that is related to it is only going to get worse and, because I am a fighter and not one who easily accepts adversity, I believe that my writing will help me to accept what is and find peace and serenity in it.  I thought I had both of those things from working my 12-Step program, but, in fact, I have lost that which centered my life because I have been so ill for the past number of years. I hope that writing this journal of my current HIV/AIDS journey will be great therapy for me. It is certainly cheaper than psychotherapy sessions.

In 2010 I spent six of the twelve months in the hospital with various types of pneumonia and bronchial infections always requiring hospitalization.  This happened every other month for twelve months. Sometimes the hospital stays were so extensive, lasting as long as four weeks, I would need rehab in order to have enough strength in my legs to walk. If you read my book, Thoughts of a Tribal Elder: One Queerman’s Journey from the Ashes Risen, you will know that I am in recovery from drug and sex addiction and work an exciting and life-giving 12-Step program called Crystal Meth Anonymous (CMA).  I worked a Sexual Compulsives Anonymous (SCA) program for many years, and feel quite sober in my sexual expression.  I also feel quite sober in my drug program, but I have realized only recently that, indeed, I could go right back “out there” and use again. Addiction is an insidious disease, always ready, just under the surface, to spring into action. Given enough adversity to drive me slightly crazy, I could use drugs again in a heartbeat. I can honestly say that I won’t do that, but I cannot get that arrogant or my program will fail.

My last drug use (clean since February 4, 2005) had much to do with my illness.  It was also an emotional release from the pain of a toxic, abusive relationship of thirteen years. When one is abused on all fronts as a child and on into adolescence, one easily believes that such is the way of all relationships and therefore repeats the abuse cycle over and over again. I am happy to report that I no longer seek those out because of my recovery program and years of psychotherapy, which has taught me that I deserve every ounce of love there is to be given, that I am worthy of a good life, most of all that I am worthy of a healthy, life-giving, loving, sexual relationship, which is what I have with my beloved.  When I suffered with a deadly onset of Sepsis a number of months ago, hospitalized and in the ICU for a week, I wanted so badly to use crystal to ease my fear and anxiety after I was well enough to leave the hospital and come home to my spouse, Jerry (I will speak of him and our relationship within the context of this journal, probably throughout the journal entries).

I am blessed beyond the beyond to have a loving, compassionate, extremely brilliant, and quite beautiful HIV doctor who speaks to me of acceptance and “seeing the tulips in the gardens rather than the dog turds on the sidewalks.”  He loves me dearly and I love him.  I am so fortunate that our paths to my wellness crossed fifteen years ago. He knows me intimately, i.e. what I feel, what I think about, how I view the world, my theology, my spirituality, my relational life with others and especially Jerry, and he knows about my need to not be afraid so he reassures me on a regular basis that all will be well no matter what happens. He has seen me through some death-dealing illnesses. We have talked about my death, and how I refuse life-support measures.  He agrees that he will not impose such torture and humiliation on me and that when I am ready to die, he will let that happen with peace and humility and not try to play God with a philosophy of “life at all costs”, which is a philosophy that most doctors hold onto with a vengeance.  My neurologist, my ophthalmologists, my psychiatrist who prescribes my psych meds, my dentist, my urologist, and my podiatrist who treats my Charcot Foot and any problems I have with my feet (I have severe peripheral neuropathy in my feet and lower legs and cannot feel a thing on the surface, although the deep pain feels like 1000 wasps stinging me all at the same time or that red, hot coals have been sewn into the bottoms of my feet), all support me completely in my walk with HIV/AIDS and are so caring and compassionate that sometimes I can’t be grateful enough to God/dess for giving me such gifts as I have been given in this disease.

It is important for me to say that this will not be a journal of pain and angst, but a journal of what is going on in my life with each entry.  There will be posts of joy and triumph over the disease, peace and serenity with Jerry and my meetings, excitement over my spiritual life, the beauty and hilarity of my two cats, etc.  This is not going to be a dark blog, although there will no doubt be times of darkness, because I do fall into them not infrequently.  I will write about my relationship, which is absolutely the best I have ever known. I will speak about everything that is going on around my illness, both glorious and desperate, and I will write about my frustration and rage at society at large for continuing the stigma of people living with HIV/AIDS.

I am excited that I have the energy to do this project which I hope will illuminate my life for people who will learn about what life with HIV/AIDS over a thirty year period of time is like. I am relatively rare in the HIV world, because I was in the first wave of the holocaust  and have survived death, and the medical world has no experience with aging people living with HIV/AiDS.  My prayer is that my blog will help them in their work

Be well, be blessed, be a blessing to others.

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