Friday, August 25, 2006

Twenty-one Years Now

It was twenty-one years ago today that I drove myself over to Chapel Hill and parked in the UNC Hospital parking lot across Manning Drive. I walked across the flyover to the Hospital and checked in at the desk for an appointment that would forever change my life. I was to see one Dr. Smiley, whom I didn’t know, in the Infectious Disease Clinic. I had been referred to her because I had lost 15 pounds rather abruptly for no reason and I had swollen lymph nodes throughout my body. It was suspected that I might have been infected with HIV, but no one could say for sure at my regular clinic. All I can say, is that the young blond intern who was working with my doctor there had been crying when they came in to tell me they had scheduled an appointment for me at UNC.

I met Dr. Smiley, a beautiful, happy, kind and caring lady—pretty as any beauty queen—and she began to take assessments of my health. I had never had such a thorough exam in my life, although now, I can predict what will be done in advance and can recognize this or that test for the organ system that is being checked. It is funny what you learn with enough time. Back to that day, though…she inserted a tube down my nose to see if I was bleeding in my stomach, then scoped me from the other end to check for blood loss in my large intestine. We labored through neurological exams with “press up against my hand with your knee” and “good” and then “try to bend your arm at the elbow while I hold it steady” and “good”. Nothing unusual presented itself that day. Finally, there were the blood tests. A battery of tests to check out all of my organ systems was administered through tiny little tubes, about ten of them in all. There were blood gases, there were clinical chemistries and differentials, there were sedimentation rates and hepatitis antibody tests to be done. I was told that the labs would check me for everything and until everything else had been ruled out, they would not check my blood for HIV.

At that time, just having the mention of an HIV test on your medical record was enough to have you excluded from buying insurance. If you want to hear insurance industry horror stories, ask me sometime. I both hate and tolerate the insurance industry for the necessary evil that it is until we finally realize the need to care fully for all of our citizens in this country. I long for the day when we can just present an ID card and medical care will be free for us all and not a managed nightmare of red tape.

But I digress…There was a test that cemented the sainthood of Dr Smiley in my mind on that day. I needed to have some type of blood clotting times evaluated and that particular test required a control sample of blood to which mine could be compared. Dr. Smiley walked down to the labs with me, rolled up her sleeve and gave a sample of her own blood to serve as my control sample. I thought that here was one wonderful person and I was right.

I walked out of that clinic that day not knowing what lessons it would teach me in the long run. From there, I visited a dear family member who had been hospitalized at UNC as well at age 12 and pretended just to have been in the area. I then went home and went on with my life until the phone call came on 12 December 1985. My blood samples had been tested for everything under the sun and had come back normal or negative. Finally, with no other resort, I had been tested for HIV. The Elisa test was positive, so they ran a Western Blot test to confirm my results. It, too, had come back positive, so the news was in. My life was forever changed. Not long afterwards, during a visit with another physician, I was advised “to get [my] affairs in order” because the life expectancy as we knew it then was no more than a few years.

Twenty-one years, as my friend Bonnie once put it, is a long time “to wait for the other shoe to fall”. I am happy to wait, though, even if my body is constantly flexed as if expecting a blow at just about any time. In the past 21 years, much has changed about HIV/AIDS. First off, most of my friends at the time I was infected are dead. Secondly, the stigma that they faced eased off a bit, but is perhaps still worse than I care to admit in the gay community itself. The drugs we take are better able to control the virus within us, but they make us as sick as the disease at times, especially if we have been through many different combinations of therapy in the past and especially as we get older and survive longer. One thing, though, has remained constant. Dr. Smiley is still a very kind and beautiful person. We ended up working together at the same company for a number of years after she left the clinic. I was sad to see her leave a space where she could be my doctor, but can imagine the toll of losing so many patients in the early days of AIDS when the illness automatically meant imminent death for most. Either way, her compassion was so comforting when I was alone in my open-backed gown in that clinic. I was truly a frightened 25 year-old man facing his death for the first time and she helped make it less painful and less isolating for me.

There is one more important thing that has not changed. We all are still living with HIV/AIDS. Sadly, many have bought the media’s presentation of the pharmaceutical marketing hype about cocktails and pill combinations and how manageable this illness is today. Well, maybe we don’t die as quickly, but we still do die. The medications fail and no one talks about what you do after that one-a-day pill no longer works for you. In addition, the side effects to one or more drugs can be intolerable for many people. What will you do it that happens to you and the only alternative is to bear it or die?

We all know that the Bush administration’s policy of “Abstinence Only” is unrealistic. If that worked, we would not have teen-pregnancies and unwed mothers. It is time for us to get real with this illness once again and to forget that utopian dream world where every family is made up of a husband, a wife and 2.1 kids named Beaver, Wally and Muffy. If you are HIV negative, it is far better to protect yourself with a latex condom that it is to buy into the hype and find yourself one day with wasting syndrome and nausea so bad you can’t eat. Don’t get me wrong…I am thankful to be here 21 years after the fact of learning my HIV status, but I just don’t think our culture should sugar-coat the realities of this disease. It kicks ass and hard and you better believe it.



Blogger Erin said...

I can not imagine how terrifying and oppressive it must have been to be diagnosed in the '80s, or how much a toll the disease and social stigma must take on you physically and emotionally.

I'm so happy that I have the honor of calling you "friend" 21 years later Ron, and be it a side-effect of the disease, or just your basic personality (or some mixture of the 2) I think you are one of the most wonderful people I've ever (not-) met.

I don't know that I'd be so generous, caring, or have such a wonderful sense of humor, were I in your place.


8/25/2006 02:44:00 PM  
Blogger Paul Decelles said...

Thanks for this Ron,

I plan on sharing this with my students when we discuss HIV in my classes.



8/25/2006 09:25:00 PM  
Anonymous kim said...

Wow. You're right. It's easy to think that HIV is "under control".

I'm afraid that the younger generation, and I have a nephew who is gay, will not understand the fear and the dread and the terrible ordeal of watching friends and loved ones die like we did in the early 80s and will become cavalier in their attitude towards protection.

We lost two wonderful men who were our friends. I don't want to see that era repeat itself.

Thanks for the wakeup call.

8/26/2006 01:10:00 PM  
Blogger Sue George said...

I was very moved by this post, Ron. I am the same generation to you, but different continent, and although all my close gay male friends were spared, a whole circle of other friends and acquaintances did die. Now, I know several men with HIV who take various combination therapies and are in better or worse states of health - but no one could ever say they were really fit and well.
I am constantly flabbergasted by the number of sexually active people I meet (active as in more than one partner) who don't think HIV will ever happen to them. And therefore don't use condoms but instead hope for the best, or rely on appearance to ensure the health of their partners?!
But it can, it really can.

9/16/2006 06:25:00 PM  
Blogger The Dreamer said...


We've talked on occasion and shared that we've been similar places. Right now after 23+ years living with HIV i'm having severe muscle wasting in both klegs, due to spinal damage and myolopathy or unknown origin. Seven years on zerit disfigured my face, totally strip mined my butt and extremities

right now facing possible paralysis, lie sux today

9/24/2008 01:56:00 PM  

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