I sit here, trying to crawl out of the hole of sickness and side effects that has been keeping me trapped in my home and bed for the better part of a month and a half. In the thirteen and a half years I have been positive, I have had so many "episodes" like this. . . And when I really stand back and look at all of this, like some disappointed parent discovering that the kids had yet another kegger (do kids have "keggers" anymore? If not, then they really are missing out on a great rite of passage), when I take the time and though to seriously relapsed on my life the past few months, I know it could have been a lot worse in so many ways, but now I have to start forgiving myself for the days when I did not see that. . . .
It all started with having to move at the end of June (and all the crap that goes along with moving, even within the city you currently reside), and the even before I could find where I had packed the extra hair pomade, I went on a five day vacation to Dallas, Texas to meet another internet "pen-pal" (and attend a gay and lesbian Country Western dancing convention and competition, which was another strange story unto itself). Three days after getting back from that, I had my very first book reading and signing. I was so surprised by the excellent turn-out, and I sold thirteen books!. . .
Anyways, even as I was enjoying all the new changes and the hopes for further opportunity, I had this strange feeling that something was "not right" inside me, and a few weeks later, I was right.
I need to backtrack a bit if I may: I am one of those persons who will get almost every side effect from any drug ingested or taken, even the "over the counter" crap at Walgreens. When I first tested HIV positive, I was given pamphlet after pamphlet, small bound books, and even a couple three-ring binders filled with facts, terms, and jargon that I could not possibly absorb as I was trying to deal with my diagnosis. One of the big ones they all mentioned was neuropathy, which is basically nerve degradation/damage caused by either taking such drastic medication (and remember, back then all that was available was DDI, 3TC, and the ever-nasty AZT) for a long period of time, or the HIV virus itself, or possibly both (depending on which pamphlet you read). . .
I was also asked many times in my first 3-4 years if I would participate in some of the drug studies that were going on at UNMC (University of Nebraska Medical Center) at the time. I was considered drug "naive" (basically, I had not taken anything that would compromise any results), and people like me were in short supply back then (up until the arrival of protease inhibitors and viral loads, people with HIV were encouraged to start taking meds as soon as their T-Cell counts went below the 500 mark, and most people had a reading near that level when they first are diagnosed). I decided I would sign up for any study that I was offered for two big reasons. I wanted to be involved in the creating better drugs and treatments for HIV/AIDS because it was a way to help; far more personal than wearing a ribbon or giving some money.
I was also dealing with a lot of guilt because I had to go on Social Security disability because I desperately needed a way to pay for my healthcare and prescription drugs (via Medicare and Medicaid). When I was diagnosed, I was not yet eligible for insurance at my job (I had missed the yearly sign-up date by one day so I had to wait until the next one arrived), and the bills were starting to quickly pile up in only a few months.
One of the drug studies required that I be on AZT for at least two months before the trial started. I had the hardest time getting used this drug (I am not going to get into all the gory details about the digestion horrors and bodily noises, but thankfully if AZT is given to people as a method of treatment, either by itself or mixed with other drugs, it is at a much lower dosage now) and had to miss a lot of work due to being too wiped out and kicked in the ass with nausea. I knew that I would eventually get used to all these medications, but I also knew that these bills would never get under control. I also was worried about not being able to get any insurance, because it was till very legal back in 1992 to refuse someone just because they were positive.
I did find out that the insurance company at my job would actually carry me, but I would have to pay for everything (and the premium) for at least a year, and I could only start sending in things to be paid for after that year if I had a zero balance with whatever medical center or doctor I was using. . .
So I went on disability, and since the drug companies themselves paid for everything (visits, tests, drugs, and certain procedures that might occur due to side effect from whatever med is being tested), I would not be costing the taxpayers anything for at least the first few years of my disease (we were also told that we should expect to live 5-7 years after our diagnosis before anything serious would occur and things would end). Basically, I tried my best not to "ride the system." I still don't. I only ask for things that I really need help with, and still scrounge up extra cash here and there cleaning houses and such. . .
What I did not know back then was that in most of these studies, I would be put into the "control" group, where I took mainly AZT and placeboes. I didn't know (or really think about the fact) that no one did any long term studies on what drugs like AZT would do to a human body years later. I didn't know that I would develop problems like osteopenia, osteoporosis, arthritis, joint pain, neuropathy, myelopathy, slight twitching, muscle loss and atrophy that would prevent me from getting a job later on in life when my T-Cell and viral load counts were much better.
Anyways back to the here and now. . . About three months ago, I noticed that my right foot was tingling like mad, as if it was falling asleep all the time. I dismissed it as neuropathy (nerve damage), and went on my merry way. Then, about a week later, I was having trouble going up and down stairs because that foot was always catching, as if I could not tell where that foot was compared to the rest of my body.
Within a few days my right foot was almost useless and I falling down all over the place; sometimes actually doing some damage to myself (I still have marks/scars on my leg from the time I caught my foot in some stairs as I was leaving my apartment and I took a 90 degree fall into some concrete). I knew that this was way more than "normal" neuropathy, so I finally got in touch with my doctor, and started a massive (well, it felt that way at the time) series of tests to see what was wrong with me. . .
So after seeing my doctor, who recommended me to a neurologist, who recommended that I see another specialist (who I had been seeing already due to the twitching) I have learned this: I now have what is called a "drop foot," basically a pinched nerve that is causing numbness and etc. My neurologist feels that this is due to the sudden weight loss I experienced these past few months (I usually lose some weight during the summer, but this time I lost almost 20 pounds), and he had read/heard that this is happening to other people with HIV as well. . . . Right now, I am wearing a brace on my right foot and calf that keeps everything "in place" as I walk, and
During all of this, I have gone through the literal gamut of emotions, fears, worries, and "dead-end" scenarios that one would expect when you are faced with the possibility of losing the ability to walk. I could not picture myself using a walker or even a cane to get around. I guess in some way I thought it would be as if I surrendered to the virus and given up, and yes, there was some vanity floating around in my head (and wondering if anyone would find me at all attractive if I had to hobble around with the help of some walking aid, or worse use a wheelchair) as I was trying my best to "keep a good face" in front of everyone else. I will admit that I had my share of "breaking down," but thankfully they occurred in the privacy of my own home and around those who truly cared for me and understood what I was going through.
And as many of you might expect, I could not really get in the "mind-set" to write any poetry, as if words and I were not getting along. I had a hard time thinking beyond the sudden changes (and the threats of even more changes), and could not find or feel the metaphors in the world around me. I do not really know what I could say was the definite reason for my creative "well" to "run dry" (if I must use these analogies, and right now I cannot think of anything better), and the irony of struggling to walk as I struggle with meter and stanza is not lost on me.
So that is what has been happening, and I am working on new poetry even as we "speak." I want to thank you all for your support and faith in me and my work all of these months. It has meant so much to me, and I am very very grateful.
Thanks again.
