Thursday, 3 October 2013

Daily Struggles With HIV And Neuropathy

Today's very personal post comes from (see link below). Amongst the writer's problems, is severe neuropathy and this article gives you a glimpse into how many people struggle with their lives with chronic pain and the aftermath of HIV. He has his own program of dealing with problems in daily life and if nothing else, this post will perhaps remind people that however bad they feel on a given day, others may face much greater difficulties. We can all learn from the experiences of other people who share our health problems and sometimes, we just have to sit back and breathe a sigh of relief that our lives are perhaps not so bad after all.

Anatomy of an Illness, Part 3
by Roger Goodman, M. Mus., M.Div

Below is a quote from a posting on a 12-Step Gratitude Group on Facebook. I wrote it August 21, 2013.

Tonight I am trying my damnedest to work the Third Step and the Serenity Prayer of my Crystal Meth Anonymous (CMA) program. Tonight I am obsessed with death and the slow agonizing road to that never-final end (I will be back!) Tonight I think about wheelchairs and massive life-changes, and, of course, chronic pain, which I don’t have to think about, I just have no choice but to feel it every day throughout my waking hours. My sweet Jerry keeps talking with me about acceptance and living life on life’s terms, and I’ll be damned if I can do that right now. I only feel the terrible sadness that comes at the beginning of the end of things. I try to say “thy will not mine be done”, which is something I learned to do in my CMA program. Knowing in my heart and mind that this illness has nothing to do with my will, but how I live with AIDS is definitely my will.

Tonight, I would just like to have a huge lotus on which I can sit in serenity as it floats down the river of my life, sometimes gently and sometimes bumpily and the natural flow takes me into an estuary and there is illness, but then the tides always take me out again and back into the flow of the river that is the Dharma Wheel. Tonight, I cannot say the Serenity Prayer and have it mean a thing, and the Third Step Prayer means nothing to me at all. The only thing that gives me hope, right now, is my CMA family and my beloved husband Jerry, who works a program like no other I know. The men I love at the Sunday and Monday night meetings know who they are and you should know that the two things I feel grateful for tonight are y’all and my sweet Jerry. THERE, I finally got to some gratitude. That was work, but getting here is a blessing! Thanks for letting me share. It was a good meeting. I’ll keep coming back!!

Honestly, I don’t know how I would get through this scourge of a disease without my 12-Step spirituality, which I achieved by getting a sponsor, working the steps, and going to meetings and (I would add) be part of the fellowship. It is a spirituality of such Amish-like simplicity, and simultaneously such exquisite power, such undeniable truth and such continuity that I can apply it to any spiritual path I wish at any time and all those paths make so much more sense to me. It is as if I can find the core of each path, be it Buddhism, Taoism, Hinduism, Christianity, Judaism and Queer Spirit in the fullness of 12-Step spirituality.

Today I am exhausted. I went to the grocery store with Jerry at about 1:00 and it wiped me out. I slept for a good part of the afternoon and then watched “Chariots of Fire” which is a film I have not seen since its opening in the early 1980′s. It is a magnificent and true story with equally magnificent men who are the British running team in the 1924 Summer Olympics in Paris. Ben Cross is a very beautiful man with the body of Adonis. Somewhat muscled in the chest and abdomen but not overly so, just sort of a normal, naturally gorgeous body. It is an inspiring story and an exquisitely done film. The English have a way with films about their own country, either true stories, or stories of the great books by the Bronte sisters or Jane Austin for instance, classics really. In any event, I feel terrible all over my body right now. I am fatigued to the point of overall body pain, which makes me very emotional. I take so many psychotropic drugs for depression, anxiety, and bi-polarism, and sometimes my grief, which colors so much of how I react to films, beautifully played great music, and even television, is overwhelming even with the psych meds. left over from the AIDS holocaust.

It is not so much the loss of loves of my life – my friends, colleagues, acquaintances, lovers, and my entire Queermale family of seven Queermen with whom I spent most of my social and domestic and sexual life for many years, but grief over the loss of my abilities to function properly in the world . I have lost my ability to walk more than three blocks without tremendous pain and exhaustion, my ability to sleep through the night or even go into REM sleep when I do actually sleep for about four hours a night with many naps throughout the morning and early afternoon until about 1:00 PM when I get some energy for physical therapy after which I am exhausted again. My initial PT sessions were so difficult, working on strengthening my legs, which have atrophied terribly, that it took me two full days to recover from the effort. Now, because my legs are stronger, PT is not as difficult. My Physical Therapists are so wonderful with me, understanding my limitations and my pain threshold (which is very low) doing certain things, that they really tailor their skills to my particular needs regarding muscle burn and fatigue. Last week, the therapist I was with did certain exercises with me and they helped so much, that when I went back for my second session that week with another t herapist I insisted that we do the same routine that I did with Terry the session before. Today I can get in and out of a chair or a car with far less pain in my knees and legs than I have been prior to the PT. I took a nasty fall on the sidewalk about three weeks ago and fiercely tore my right shoulder rotator cuff. Fortunately, there were no broken bones, just terrible soft tissue damage. My PT and I are working to alleviate the pain from that.

It was both my neurologist and primary care physician (HIV doc) who told me to go into PT. The neurologist says that it will help the Parkinsonism tremendously and my PCP says it will give me an overall sense of well-being. It has done all of those things. My joints are getting rigid from the Parkinsonism, but I am using hemp oil on a band-aid with solid (room temperature) coconut oil spread very lightly on the gauze pad and then the hemp oil gets put on that and the whole thing acts like a dermatological patch, like a stop-smoking patch, the hemp oil getting soaked into the skin through the coconut oil (which absorbs quickly and is in most sun screens and tanning lotions). Coconut oil is also in many cosmetics. So, that absorption happens with the hemp oil and the hemp loosens my rigidity and helps me get in and out of chairs and cars more easily. Hemp oil contains only CBDs, not any THC, so there is no psycho-active affect. It also alleviates some pain, although it is my ingestion of cannabis fudge with a high grade and high concentration of THC from cannabis indica that really relieves the neuropathy pain in my feet to a great extent. The problem with THC is that it is a soporific and makes me even sleepier. There is a cherry candy, which only has cannabis sativa in it, which is not sleep-inducing and which I suck on during the day to help alleviate the neuropathy pain when I am awake. About a year ago, I asked my doctor that if cannabis were made legal in Illinois for medicinal purposes, would he prescribe it for me, and he said absolutely he would. Well, now it is legal in Illinois and I am using it. It doesn’t interfere with my drug program, because we say that we can use narcotics for pain if prescribed by a doctor, and I am following doctor’s orders. It is not toxic and far better for me than Hydrocodone, although I do use 225 mcg. of Fentanyl every 72 hours. Also, I don’t smoke cannabis. If I smoke it the psycho-active affect is so powerful that I can get easily triggered regarding other drugs. I make sure to use only a specific weight of fudge which I weigh on a gram scale and only two squares of cherry candy, otherwise I get high from both of those (I cannot get h igh from the hemp oil) and that is not what I am using it for.

I am beginning to lose important parts of my life because of these illnesses and infections, which are ever present in one form or another. I have been sitting on the Steering Committee of Oberlin Lambda Alumni (OLA), the Queer alumni group at Oberlin College. I sat on the first SC back in the 1980′s when it was founded, and because of my history as a Queerman at Oberlin when I was a student I have a tenured seat on the Committee. I’m afraid that the coming meeting in September might be my last. The meetings are, in themselves, quite exhausting even without my medications. I am afraid that I will fall asleep during the morning session, but that doesn’t appear to be a problem for either of the co-chairs. I suspect I will become like a penitente and flagellate myself for not being able to stay alert and awake during our work at the September meetings in Oberlin when we do our important work for the Queer student body.

If the Parkinsonism had not escalated, I would not be so sick and in such constant pain. Parkinsonism is not Parkinson’s Disease. The Disease is organically caused and occurs because of an unnatural lack of Dopamine in the brain. What causes the depletion of the production of Dopamine is unknown. There are those who say it is genetic in causation. Others say it is environmental. The consensus is that both factors come into play. Parkinsonism is caused by external causes, including the long-term presence of HIV in the body. One of the primary causes is brain trauma with the Parkinsonism developing years after the fact. My first opportunistic infection, which was my AIDS-defining illness, was Herpes Simplex Virus Encephalopathy at which time every millimeter of my brain was covered in Herpes lesions and which put me into a 10-day coma. That was during the period of time between Christmas Eve and into January of the new year 1995-96. The Parkinsonism developed in 2002. I have al l the classic symptoms of the syndrome. Parkinson’s Plus Syndrome (PPD) is another name for Parkinsonism: tremors, bradykinesia (extreme slowness of movement), falling, multiple system atrophy, rigidity, and loss of legible handwriting to name a few (Jerry writes anything I have to hand write such as checks, state program forms, etc.). I have all these symptoms. There is no cure for the illness, and there is little medication that works to alleviate the severity of the symptoms. Cardidopa/Levodopa (Sinemet) used for Parkinson’s Disease may work initially for Parkinsonism, but the efficacy of the drug wears off with time. The medication no longer works for me, although it did initially.

PPS plus the chronic infections from a compromised immune system sometimes puts me into a state of despair, because it all escalates over time. It is during those times that I have to strongly work my 12-Step CMA program and say the Serenity Prayer over and over again like a litany.

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 also work the 3rd step really hard. We made a decision to turn our will and our lives over to the care of a God of our understanding. Working Step 3 is, for me, a difficult thing to do. It requires a tremendous amount of trust and faith that there is, indeed, a power greater than myself (Step 2), what we in Recovery call our Higher Power. My Higher Power has always provided for me. I have never lacked for food on my table or a roof over my head. I have never been rich, but I have always had what I need. The richness in my life comes not from money, but from my Recovery work, my sober friends, my sponsor, my brother, and, of course, my beloved Jerry. 12-Step work is about relationships, making them healthy and fulfilling. My life, except for my physical limitations and the chronic pain, is really quite wonderful. It is rich and colorful and filled with the natural drama of living. Some people have said that I am a drama queen, but I don’t believe that we can live life to the fullest without some drama, especially in our relationships, our work, and our play. Sometimes in singles ads in the Gay press, the ads say “no drama”. My hunch is that they say that because they have a tremendous amount of drama in their own lives and don’t know how to accept it as normal. Life is dramatic!!! If it is not, it is not worth living, and I intend to live my life to the best of my ability. I love my life, even with the limitations and the pain and the uncertainty about the future of my illness. Life is good.


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.

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