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?”