queerwitness

Essays plus more for the mind and spirit

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!!

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