The Heavy Heart

A story:

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          I was diagnosed on a dark, cold night last winter. I knew I probably had it. I’d been sicker than usual. So had my best friends (I’ve lost 14, including my three best friends).

          I hadn’t lived as Mother Teresa. However, what I didn’t expect was the subtle change in the way I now perceive and prioritize everything and everyone. So much just doesn’t matter anymore. So much else is equally and simply priceless, such as friends (sick or well) and my own health.

          Now, each day is a wonderful reprieve, each hour without aches and pains a bonus, and each doctor’s office visit is either a routine prophylaxis or another crash course in symptoms, diagnoses, and a trip to the friendly pharmacy. Is each pimple KS [Kaposi’s sarcoma]? Each cough PCP [pneumocystis carinii pneumonia]? Each bump some lymph-node trouble?

          Am I angry? No! I played. I pay. I have no regrets! In my mirror I now see something new: a fighter and a survivor, willing to do anything to stay alive – as long as it is a quality life. I’m sympathetic to most of the goals of ACT-UP [AIDS Coalition to Unleash Power]; hopeful of a vaccine; overwhelmed by the loss of sooooo much talent, the size of The Quilt [an AIDS memorial I progress]; and the hope that “chronic manageable lifetime illness” will kick in before I check out.

          Life is still very good, has much to offer, even with my immune problems. The alternative is another memorial service, another loss. Fighters last longer. I’m a fighter, fighting for my life.

          At a camp my parents sent my brother and me to when we were young, there was a sign hung in the dining room that read: WHEN YOU THINK YOU HAVE NOTHING TO BE THANKFUL FOR, BE THANKFUL FOR SOME OF THE THINGS YOU DON’T HAVE. This may sound morbid, but I have pictures of me with most of the friends I’ve lost to AIDS. I’ve had five-by-seven photos made that are up on my wall in a collage. It’s a place of honor. It’s really important for me to focus on them when I think of the MAI [mycobacterium avium intracellulare], the KS, the toxoplasmosis, and some of the really awful things that some of my buddies have had and had to deal with. Boy, I don’t have a problem in the world compared to what they went through. So I am grateful for the things that I don’t have and don’t have to deal with. At least not yet.

          I’m not giving up. It may sound a little goofy, but I don’t want to jump right on the medical prescription bandwagon. I’ve opted not to go on AZT or DDI at this time. I don’t want to do that. I know it’s pretty toxic stuff. I know that everything is a trade-off, but at this point I just don’t want to put that stuff in my body. I am doing Zovirax, and I’m also eating bananas for neuropathy. But that’s about it. For now, I’m doing OK. If I were to have another major episode of something, I would probably reconsider, but I think I have some time.

          I’ve also joined Test Positive Aware, a support group here in Chicago that’s been pretty significant to me. I very much like the “Ask the Doctor” nights that they have about once every five weeks. The question-and-answer periods are incredibly informative, and I’m always asking question. I also read a lot. I get Project Informed, Data, New York Native, and the TPA newsletter. I read the gay rags every week, not in a phobic way, but just because I want to be informed.

          What do I miss most?

          Having sex without rubbers. I really miss that.

          What would I say to other people?

          The most important thing is to listen to your body. That sounds awfully simplistic, probably, but I think it’s the thing that has worked most for me and for a couple of my friends. It tells me when I need to eat. It tells me when I need to rest. I get really tired now. When my friend was here from out of town, I took a nap twice a day for 15 or 20 minutes. I just lay down and did nothing but listen to my body. It may sound like voodoo, but it really does work.

          What was my childhood ambition?

          I wanted to be a king and live in a castle. Also, when I was 10, I wrote something called “My Ambition.” It was done on that old wide-line paper, and my penmanship was just horrible because I was just learning to write instead of print. Now, I have it up on my wall. Let me share it with you:

          Well, I’ve changed some of that.

Bill Hanson, 47, is an administrative secretary. He was diagnosed with pneumocystis and AIDS on December 14, 1990. As of this writing, he is still working, still healthy, and still fighting.

Text: Voices That Care - Neal Hitchens

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From an old book © 1992. I was looking through my books on the shelves and I remember reading this particular book way back when... I remember reading it for the first time, I just couldn't stop crying... some stories are very sad, but mostly the book is filled with stories of encouragement. AIDS happens to people on all walks of life. So much to say on the subject itself...

Some stories are hard to take in at times cuz you feel so much for the life of the individuals, everyone's affected by it one way or another... It's not an everyday book, but it's a good book. A firm reminder on whatever quality of condition that I'm in, I shall welcome my every day life with open arms.

Posted by robert at April 21, 2004 09:54 PM