Sunday, 20 October 2013

Living With Neuropathy And HIV And More

Today's post from (see link below) is the second part of a three part series about living with HIV and its side  effects. Part One can be seen here and Part Three, here and have already been featured here on the blog. They are all powerful personal accounts of what it is like for one man to live with HIV and other HIV health-related problems that often happen to older people with the virus. Not easy reading by any means but certainly material that makes you think. Neuropathy is just one element of his life but it's an important one none the less. Worth reading for people with or without HIV who have an interest in how neuropathy can play a huge role in the quality of life for people. 

Anatomy of An Illness – Part 2
by Roger Goodman
M. Mus., M. Div August 23rd 2013

Because I am living with a progressive disease that is going to get worse and worse as time goes by, I have decided that my first post entitled “Anatomy of an Illness” is to be the first in a series of postings documenting my journey with AIDS with all its implications-physical, emotional, spiritual– for someone who has been living with HIV for thirty years and with full-blown AIDS for seventeen. The journal will consist of everything that is happening in my life around the disease–the excruciating pain, the boundless joy, and utter triumph that I feel so often, sometimes separately and sometimes simultaneously. I am doing this for at least two reasons (I’m sure that more will surface down the road). The first is that I am called to debunk the idea that AIDS is over because of the current medications available to control the amount of virus in the system and to keep the T-cells as high as possible, assuming that by doing those two things there will be no illness, just the intellectual fact that one is HIV+ and must take daily medications to keep the opportunistic infections at bay. Right now my viral load is undetectable and my T-calls are nicely high. That doesn’t mean, however, that I am well. Rather, I would call myself someone who is among the “walking ill”. The second reason is that I am relatively rare as an aging person with AIDS and the medical community really doesn’t know what to do with those of us who have survived death in the first wave of the holocaust.

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 ac cepts 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 with 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 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.


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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