Essays plus more for the mind and spirit

Anatomy of an Illness, Part 5

One month ago I had part of a toe amputated. I had obviously banged my foot into something like the sofa and didn’t feel it because of the peripheral neuropathy in my feet, which makes the surface of my lower legs and my feet completely numb to touch, but which provides excruciating pain deep in the foot, like 1000 wasps stinging me and red-hot coals sewn into the bottoms of my feet. I had probably been walking around with all the distal bone shattered into splinters for many months and it got infected, except I couldn’t feel that either.  Then, about 2 months ago, I felt a sharp, extreme pain in that toe, thinking it was new pain from the neuropathy, but a month ago I noticed a lot of blood on the wooden floor and found the wound that had a discharge. The pain finally got so excruciating inside the toe and because I was running a fever, my partner and I went to the ER at my hospital and they said that I had a severe infection and immediately hung a bag of Vancomycin, a double dose that dripped over the course of ninety minutes.  Then I was immediately admitted receiving lots more Vanco IV and adding Levoquin to the mix. I stayed for a week.  Another infection come and gone, except whereas most people get infections, perhaps run a fever and have body aches for a few days while they recuperate at home, I have to be hospitalized for a minimum of a week.  My infections often turn septic.  It’s a whole different world if illness for me than it is for those who are HIV-. My doctor is one of the finest HIV/AIDS docs in the country, but even he does not like to say that any of my many infections are HIV-related.  He was terribly sick himself and was diagnosed with AIDS in the 1980’s.  Now he says it is a disease that no longer exists and we should all be very grateful that the scourge is over.  Well, my dears, it may be for some, but it isn’t over for me and it never will be.

All my infections exist because my immune system is completely compromised, and HIV- people just don’t get as sick nearly as often as I do, and if they do, it is not to the point of hospitalization very often. I thank my God/dess that I have a port-o-cath embedded in my left pectoral muscle from the time of my chemotherapy fourteen years ago. It still works like a charm, and nurses love them because they require one thoroughly painless poke with a tiny railroad spike of a needle  (which really is painless when the nurse accesses it correctly).  That’s all.  No setting of IV’s for medications and painful, invasive blood draws.  Residents hate ports and they consistently put me through a third degree ever visit to the hospital about why I have a “foreign” object in my body when I am not on chemo anymore. They consistently tell me it will get infected and I have to have it removed, which I know is neither true nor necessary.  It is a closed system, unlike a central line or a picline. There is nothing exposed to the air. I know that’s just the normal arrogance of all the residents that I have encountered, but it still offends the shit out of me.  They all think they know everything, because now they are “doctors” and no longer medical students and can order patients around and tell us what to think and what to do fully expecting that the patient will blindly do exactly what they say with no questions asked. They generally talk to patients as if we are children, when, in fact, because I have been living in hospitals for seventeen years, I speak their medical language sometimes better than they do. They don’t believe in collaboration between doctor and patient and still work under a power-over paradigm rather than a power-with paradigm.

Often I know what’s wrong with me even before the residents can figure it out, and sometimes I have had to guide them in their work.  I know when I have pneumonia or bronchitis and I can tell the difference between the two.  I know when I am septic.  I know when I just have a nasty viral infection, or an even nastier bacterial infection instead.  I know when I need to be hospitalized down to the hour. I know about gram stains and the difference between gram-negative and gram-positive bacteria and which antibiotics work better than others against which organisms. I know my tolerance for opiates, just how much I can take without touching my drug addiction and use them sparingly.  Contrary to the myth, me using marijuana to kill the incessant pain in my body is not going to trigger my addiction.  I don’t use enough of it to do that.  I only use enough to alleviate terrible pain. I certainly don’t use it to get high.  Sometimes, I may suck on a little too much sativa cherry candy, or eat slightly too much indica chocolate fudge. When that happens I feel dirty and confused, because I will be slightly buzzed and I really hate that feeling.  I know just how much I need down to a tenth of a gram, and I weigh it on a gram scale so that I am not ingesting too much, but sometimes I slip and get slightly too much cannabis in me. When that happens I get paranoid and think I sound like a fool when I speak. I am very unhappy when that happens, so I am extremely careful about how much cannabis I use.

I have terrible body dysmorphia because of medications, especially the testosterone treatments I was receiving once a week for energy for many years and the synthetic testosterone turned into Estrogen Overload Syndrome, which happens to some men. Consequently, my male body (which was VERY male and utterly beautiful prior to AIDS and especially before testosterone poisoning, I was chiseled and ripped, with a large 8.5” x 5.0” (circumference) penis when it was hard, five inches hanging between my legs when soft, perfectly proportioned in all ways with a perfectly sized head which was large and as wide around as my shaft with a thick gorgeous vein running the length of it when erect, and I have to say that it was utterly beautiful, and my testicles were large and hung loosely low right up until the point of orgasm when they naturally pull tightly against the body. When I lived in New York City in the early 1980’s, my penis was so famous it was cast in plaster and sculpted in bronze. The plaster caster still, as far as I know, has it in her possession. The sculpture sold for a tidy sum in a SoHo art gallery in Manhattan in 1982. I am no longer endowed to that extent.  In fact it is now only the size of a large button mushroom. I know that most readers will think I am bragging about my pre-testosterone body, but I am not.  I am simply stating objective facts. In that objectivity, I no longer have that wonderful body part in the same way that I did and I am no longer chiseled and ripped. The testosterone has seen to that. It completely changed my sexual characteristics and the shape of my body generally.

I have calculated out the number of men with whom I have had sex in my lengthy forty eight year sexual career starting in 1965, and calculated out by averaging the number of encounters per day over the years, five to ten times a day, for instance with as many different men as possible in the early 1980’s alone which went on for three and a half years in New York City, which comes to a rousing 10,320 men in just the first three and a half years of the 80’s alone and doesn’t even consider the 60’s and 70’s that I came up with a figure of 20,000 (!) men whose bodies I have known. Sometimes the sex was transcendental, very Tantric (I had three three utterly beautiful men in the 1970’s who were Tantra adepts in the spirituality and sexuality of that ancient Hindu path), and sometimes it was a quick passing encounter that could only take ten or fifteen minutes at the Hudson River piers in the West Village, or the trucks in the meat packing district, or pornographic movie theaters, or men’s restrooms, or back rooms of bars, or bath houses all of which only allowed for that quick fix to my addiction when I would be jonesing for sex. I much preferred, however, to bring a beautiful man back to my bed and spend hours in exquisite, powerfully intimate sex. Often when the sex was, indeed, transcendental and lasted for many hours, I would see those men more than once and we developed close friendships, because the spirituality of the sex was so Seraphic. All of those friends, some of them very dear, are all dead now. Sex was my life’s work. Outside of my musical career performing and teaching it was my mode of communication; it was my vocation.

It is perfectly in keeping with my former sex life that I have AIDS.  I am not at all surprised.  I never was, not even at the time of diagnosis. I realize that I am blaming myself for contracting HIV, but the fact is that if I had not fucked with some 20,000 men indiscriminately, had I not objectified the bodies of all those magnificent men at the pinnacle of my own sex addiction, but treated them with the respect I stupidly thought I was giving myself, I may just have avoided the virus. I obviously was not respecting myself, what with the ways in which I treated my own sexual body. I do not feel guilty for having possibly given the virus to countless men (after all, I had no idea I had a deadly virus in me).  The other run of-the-mill STI’s were treatable, e.g. gonorrhea, syphilis, chlamydia, HPV, and giardia to name the common ones and so were not of any great concern. I had them all in the 1970’s and the medical community feels very strongly that having had all those infections contributes greatly to presenting with HIV/AIDS.

No one knew had a deadly virus in us…none of us in that sex crazed, drug-ridden world knew we were sick, but I don’t much like that I treated so many thousands of men as pieces of meat with which to be played, not even with whom” to be played, but “with which” to be played—and isn’t that amazingly dehumanizing? I am guilty of having treated men like objects and not at all like Sons of God/dess, but I do not feel guilty for having infected them, and no one can make me feel that, though many have tried. I cannot beat myself up over something of which I had no inkling. I cannot feel guilty for something of which I was completely unaware, as my thousands of Queer brothers who lived in the urban Queer centers of the US were completely unaware. I lived in a sex and drug culture, where sex was our modus operandi and cocaine was the drug of choice. It was all we ever thought about and was a social priority blocking everything else out. It was the foundation of the large majority of Gaymale life in New York City where I lived in the early 1980’s and, I expect, it was so in most urban areas. I do, however, take full responsibility for my disrespectful and inhumane behavior, and if I could make amends to them all I would, but most of those 20,000 men are dead and all I can do is live my life now, thanks to the grace of God/dess and recovery from sex and drug addiction, to the very best of my ability. Living my life with compassion and respect for the other is the best thing I can do.  Treating my brothers as full human beings and not as receptacles of my sexual energy is all I can do. It is a living amends.  It doesn’t satisfy me, but it will have to do, because that’s all that is available to me now.

My life now, even with all its hardships, is good and wonderful, rich with loving people and caregivers like my medical team and my partner Jerry. I have to trust that even with the way I lived my life in the past, that being as one who objectified other men for his own pleasure, life now is fabulous and that previous mode of living is gone for good. I am thrilled to say that I have been clean and sober from all drugs and all sexual acting out for the past nine years, and I intend to keep it that way. 12-Step recovery is a most miraculous spiritual path. I honor my brothers as the full human beings that they are, giving them all the respect that I can and, for those in my inner circle, all the love that I can. I have a partner who loves me beyond the beyond, who would do anything for me and who accepts all that is limiting for me.  He accepts what has happened to my body with no questions asked.  He takes exceptional care of me, not like a neurotic care-taker who does it for self-aggrandizement or out of some deep need to feel needed, but rather as one who loves desperately and can do nothing else as a great expression of that love. Sometimes it is hard for me to accept the help because in my addict mind I am invincible. I still occasionally like to think that I can do everything by and for myself with no need for assistance of any kind. But, the fact is, I am not all-powerful and cannot do this life by myself.  I cannot work my recovery program without the help of my fellow addicts. I need the help and love of others (not just my CMA brothers but also my families both original and chosen) to get me through what is a difficult way of living. Jerry works hard at making my life as simple and as stress-free as possible, because HIV thrives on stress and chaos. He keeps it at bay as much as possible. He doesn’t do everything for me, because he knows that the things I can do for myself I will do without his help, but if his help is needed, it is right there just waiting for me.

Life is good, and I am blessed beyond belief. Everything will be fine.  Everything will come out OK. All I need is complete faith and trust in my Higher Power, my God/dess who will take care of me as I have always been taken care of.  I have never been rich (which is just as well, actually) but I have always had enough money to have a roof over my head and food on my table and to pay my few monthly bills with some money left over for a meal out or a movie occasionally. Everything will be OK no matter what. In the words of Julian of Norwich (a 14th-cetury English Christian mystic), “all will be well, and all will be well, and every manner of thing will be well.”

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