Published on December 5th, 2013 | by Healthy Gay Lifestyles
Anatomy of an Illness, Part 4
by Roger Goodman, M. Mus., Div,
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 coma 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 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 the 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 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 painful 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-release 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 every 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.
Roger Goodman, M. Mus., M. Div. attended Oberlin College during the tumultuous 1960s during the Civil Rights Movement and protests over the War in Vietnam. He was present at the watershed Stonewall Rebellion in NYC in June, 1969. He had an international career as a concert harpsichordist, teacher, and recording artist. He was on the faculty of The New School for Social Research in New York City, the American Conservatory of Music in Chicago, and the School of Music at DePaul University as Director of the Baroque Program, a post he held for 23 years. In 2009, Roger left the world of music to become a filmmaker. He is Executive Director of his 501(c)(3) corporation Tribal Elder Productions, NFP which he formed in 2010 and is the screen writer, and director for his documentary film “From the Ashes Risen ” for which he is currently seeking funding through grants and the private sector. His new book is entitled, Thoughts of a Tribal Elder: One Queerman’s Journey From the Ashes Risen. Roger has been HIV+ since the early 1980’s and was diagnosed with full-blown AIDS in 1995 when he died during a lengthy coma, but, miraculously. he came back from death. He says the reason he came back was because he had important transformational work to do in the world for Queer people everywhere. His speaking and workshops on college and university campuses, his teaching/performing, his film, and his book are the fruits of that extraordinary journey with the Death Crone. A sex and drug addict in 12-Step Recovery, he has been clean from all drugs and sexual acting out for 8 years, since 2005. He is thoroughly grateful to his Higher Power that his life was given back to him so that he could do the work he has been given to do with enthusiasm, humility, and unending joy. Websites: www.queerwitness.com and www.tribalelderproductions.org.