On this particular morning in the very chic confines of what New York Hospital tastefully dubs the Center for Special Studies (in other words, the AIDS clinic), no one looked great. There was lots of wasting in evidence, people leaning on canes, hacking their lungs out or staring vacantly with no light in their eyes. Waiting to see my fabulous new doctor, I had lots of time to look around at the hotel lobby-style furniture, the fabulous flower arrangements sent over by Bill Blass every week and the other patients. I was treated to lots of overheard conversations about medical horrors I haven’t been visited with yet. I felt as if I were the only healthy person in the room, and that I was staring at my future.
At times like these, when I’m forced to confront someone who is clearly in the advanced stages of the disease, I have to use every ounce of my strength or I’ll end up in a psycho ward. I am not afraid of death itself. Death is a natural part of living. It’s the horror before that I’m scared of, horror that I might become someone or something unrecognizable. If I let these thoughts gallop, I’ll surely just lose it. On this day I close my eyes and pray, blocking out my surroundings. Finally my doctor comes and saves me from myself.
Having AIDS involves lots of waiting. You always have to wait to see a doctor and to get a prescription filled. You have to wait for social services, often in places which your mother would find quite unsanitary. You have to wait on the lists of AIDS service organizations. You have to wait for new drugs to come out, that may or may not work.
I have never been good at waiting. I think too much about all the other things I could and should be doing. I could, for example, be making money. I could be eating a tasty lunch at a sidewalk café. I could be shopping or talking on the phone. I probably should be writing, since I always seem to have a deadline these days.
But the people who run doctors’ offices and hospitals don’t seem to realize this. My response to their attitude is to shock and outrage them as much as possible. I make myself into a royal pain in the ass, and I’m sure you can imagine how painful I can be. I usually start by telling them that I have, like, a job. “You know,” I said to a snotty receptionist the other day, “we’re not all on disability. Some of us can still hobble into the offices.” Sometimes when I’m feeling real mean I’ll ask them if they think I’m already died, that time lo longer matters. This usually blows them away. What I’ve discovered about yelling, screaming and pushing is this: It feels good. It makes you feel more alive and you usually get your way.
But we all have to wait sometimes. During those times I put my brain on autopilot, in a semi-suspended state of meditation. Or I make plans for the future. I make mental lists of the good things in my life, reminding myself that I am indeed very, very lucky, because I am still very much alive. I see many people with AIDS waiting to die, and others waiting to live.
My experience with every long-term survivor I’ve ever known is that they don’t sit at home waiting to die. These are people who realize how precious life is. They take the bull by the horns. They go out and live.
I also see people who are still waiting to take the plunge, still afraid to fully live. Well, fuck it. What are they waiting for? We’re all going to die, and maybe I’ll die sooner than most, but nobody is every going to say I didn’t have a full life.
I won’t bullshit you. The last five years have been full of torture, misery and pain. There have been many days when, between my illness and the mundane demands of an overextended life, I ask myself why I’m doing this. There are many days when I want to pull the covers up over my head. But I make myself get up and live, even if I’m in pain. I make myself to got social events when I don’t particularly feel like it, because once I’ there I’m happy. Even if the party is atrocious, I can still laugh at it all. I try to find the joy in life, no matter how small or brief.
Because I’ve forced myself to live, the past five years have been the best part of my life. Don’t be afraid to be a difficult patient and make a scene if you’re tired of waiting. I’m going to end with a favorite quite from poet Gwendolyn Brooks. “This is the hard home run. Live not for the battles won. Live not for the end of the song. Live in the along.”