Sunday, 18 August 2013

Difficulty Living With HIV And Neuropathy: A Personal Account

Today's post from (see link below) is a powerful personal account of living with HIV and AIDS (including severe neuropathy) in 2013. Not everybody sails through the rest of their lives on one HIV pill per day and very many people still have problems from side effects, or damage from earlier medication regimes, or from secondary conditions brought about by the virus itself. This account is a reminder that even with neuropathy in your life, you may still count yourself lucky that things are not a whole lot worse. Well worth a read.

Anatomy of An Illness (Part 1)
by Roger Goodman M.Div. Published on August 1st, 2013 | by Healthy Gay Lifestyles

I have not felt at all well for the last three weeks. I am running a low-grade fever of 99.5-100.2. My normal temperature is 97.1, so going up to 99.5 – 100.2 is , for me, running a fever. I am sweating all over my body with a permanent sheen of light sweat covering every inch of me. Along with the sweating I also have chills. I am also itching like crazy all over my body but the worst part is on the top of my hands and around the tops of my ears on my head. I just feel lousy and I don’t know what is going on with my body so I am a little freaked out. I always get a little freaked out when I begin to get sick, because I don’t know what it is going to lead to. The last time I felt sick it ended up to be severe sepsis that required a stay in the ICU. I don’t want that to happen again. I just wish something would break, either get sicker and need to be hospitalized or get completely well at home and not have the low-grade fever, headache, weakness in my legs, severe body pain, and itchiness that is part of what’s bothering me. I am so depressed and I don’t know if it is because I feel sick and cannot sleep during the night, or if I cannot sleep during the night, because I am depressed. I don’t know which is the catalyst for which.

Living with AIDS is a terrible thing. The consensus is that AIDS is over, that the epidemic is a thing of the past, but I and my friends who live with the disease know better. We get very sick from odd infections that always seem to need hospitalization. This never happened before I was diagnosed from my first opportunistic infection in 1995-96 when I had Herpes Simplex Virus Encephalopathy and went into a ten-day coma and died, but from which I came back to life. I slipped into the coma on Christmas Eve, 1995 and woke up ten days later in January 1996. I came back from death because I had much transformational work to do with the Queer community. My book and my film are important parts of that work. I completely missed Christmas and New Year’s Eve that year (my chosen family and I celebrated Christmas after I woke up from death and was back to a regular room in Unit 371 at Advocate Illinois Masonic Medical Center, the incredible AIDS Unit during the 80′s and 90′s which became my second address for seven years). For those years I fought for my life against deadly infections, including Kaposi’s Sarcoma for which I received radiation treatments and chemotherapy for three years. That all ended in 2002, but since then I have been hospitalized probably twelve times with various pneumonias, bouts of severe bronchitis, and COPD as well as general, critical bacterial infections. These come and go, but there is the ever-present Parkinsonism that fells me on a daily basis. My neurologist says I have it because of the trauma to my brain from the Encephalopathy. So, I take medication and use marijuana medicinally to stop the tremors, the rigidity in my joints, and to improve my cognition, but I still have a hard time using eating utensils and writing. My handwriting is illegible, so I type everything I have to write and when that is impossible I use Dragon for Mac, a voice recognition software, to speak what I have to write.

The pain in my feet from the peripheral neuropathy is excruciating today. The surfaces of my lower legs and feet are completely numb to the touch and simultaneously feeling that I have 1000 wasps stinging my feet all at the same time. It is like having searing hot coals sewn into my feet and people don’t understand why I have such a hard time walking. I don’t yet need to use a walker, but I cannot walk without my cane and CROW Walker for my Charcot Foot (Google this if you like-it is a most amazing device) and it allows me to walk. Without it I cannot go out. I’m so tired of hearing that AIDS is over now that the miraculous medications are available. That’s just a lie. It’s a way for people to feel safe in the midst of this scourge which still hangs over the face of the earth. Plus, the side effects (the effects, really) of the HIV meds are truly terrible. The medications are highly toxic. They are a form of chemotherapy, except they are taken orally rather than being infused intravenously. I’m in recovery from drug addiction and have been clean from drugs for the last 8 1/2 years since February 5, 2005, but now that medical marijuana is going to be legal in Illinois I don’t have to worry about getting busted. Todd, my loving and brilliant physician, can prescribe it for me. I don’t believe that using medical marijuana in any way affects my recovery program nor does it change my clean date. I will use marijuana purely as a pain reliever of physical body pain and to loosen my joints, not emotional pain or spiritual pain and certainly not recreationally, just the pain from the neuropathy and the Parkinsonism and the general overall pain in my body from having lived with this virus for 31 years.

My neurologist says that my loss of short-term memory, me acting out my dreams, the nightmares that are filled with darkness and terror when I can manage to sleep at night, carrying on conversations with phantom people just as I am falling asleep, as well as the loss of balance, confusion, the inability to hold a fork to balance my food and bring it to my mouth (hence I use a spoon for most things I eat), my depression, the rigidity and pain in my joints especially in my knees which is an insidious source of pain, my difficulty balancing on my feet, the weakness in my legs, the incessant fatigue and consequent incessant sleeping, and the terrible body pain are all consequences of the Parkinsonism. Perhaps using marijuana will alleviate some of the symptoms. It is powerful medicine. My brother is a licensed marijuana grower in New Mexico and he says that he has seen miraculous recovery from various illnesses in his patients including some skin cancers when applied as a cannabis oil.

I’m taking a break now. I’m tired and need to take a nap.

After a break in writing this, I am back. The break took longer than expected. I have to say that my wish above to either get sicker and need to be hospitalized in order to heal or get better at home came true, except it was the former wish that came true. I was going to take a nap, but instead ended up in the emergency room of the hospital I use. I was just discharged today having been admitted for an extremely elevated white count in my blood indicating an infection somewhere in my body (yet another one!!) and that has been what has been freaking me out this past three weeks . I saw Todd, my PCP (Primary Care Physician) in the hospital today and he discharged me because my white count issue has been resolved with IV Levoquin and he was afraid of super infection just from being in the hospital. I have to now take it orally for the next seven days. I was discharged this evening. I am so glad to be home with my dear Jerry and our children (our cats Murfee and Gizmo). Except for the intense fatigue, I feel so much better. The body pain from the infection (not counting the pain from the Parkinsonism and the peripheral neuropathy) is much alleviated and I can think clearly again.

This has been an extremely difficult year regarding my health: two pneumonia’s, two bouts of sepsis the first of which required a stay in the ICU for four days because I was so close to death and the second coming within twenty-four hours of being discharged from the first infection which was completely cured, removal of a ureteral stone which required two surgeries, excision of a squamous cell carcinoma on my scalp, a TURP (prostate surgery), and now this generalized infection. The TURP was not completely successful, however. I still have bladder pain when I urinate. I am seeing my urologist on Monday and I will see what he has to say. I hope I don’t have to go through another TURP. The consequences of the first TURP are not as devastating as I had anticipated. I can still have an orgasm (what a relief!), although it is dry. The sensations are there and the sex is great with Jerry, but there is no ejaculation. My entire body goes into intense orgasmic convulsions and my mind goes somewhere else completely. The depth of the spiritual experience with Jerry is complete but there is no ejaculation. Even without that, I experience “le petit mort” powerfully. Interesting, very.

Even with all these things that I have to deal with on a daily basis, my life is wonderful, creative, and productive. I am blessed to be alive so that I can carry on my work of writing and film making and, of course, to keep experiencing and living in my relationship with Jerry. I hope I have at least another twenty years of life and that Jerry does as well. We have much life to live fully and much loving to do. I am so grateful for my life. I live with my mortality every day, so each day is precious to me and Jerry is the center. Jerry is my rock. I am more than content with life. I have an incredible serenity and peace even with all the physical/psychological challenges I face on a daily basis. This is from my 12-Step recovery work. 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: and

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