Confronting my own mortality is the hardest thing being positive has thrown at me.
Well-meaning people will say, well, any one of us can get hit by that ubiquitous bus at any time. None of us is guaranteed the next day, the next minute, the next second -- regardless of serostatus. We all live, we all die. That is very true. But the day I tested positive for the virus that causes AIDS, a little over five years ago, I was forced to contemplate my own death in a way that I never had before. No longer was it an abstraction. It was very real to me, and very frightening.
And frankly, the chances of me dying due to AIDS is greater than my chances of getting hit by a bus, or being gunned down in a drive-by. Let's be honest.
Before I was infected, I was able to operate under a very comfortable layer of denial and invincibility. I could deal with dying in my eighties or beyond. A long, long time from now. Not now. Not anymore. Death is all up in my face -- despite being "healthy."
But a problem I have is that no one wants to talk about it. We're doing better than the earlier days of the epidemic. The "crisis is over." More and more we're "living with AIDS," thriving even, rather than dying. "AIDS is manageable." Or so we'd like to believe, we need to believe.
Yet, we are still dying. That's not negative or pessimistic or a drama queen's sniff. We are still being taken out in obscene ways at obscenely young ages. When long-time activist and writer Stephen Gendin died this past summer it really hit me ... again. He was in his early thirties, had been at the front lines of treatment forever, and had kicked up a lot of shit over the years. He was funny and provocative. I never knew him personally but admired him -- his honesty and his work.
He did not get hit by a bus. His death slapped me back into reality. News flash -- AIDS will kill you, and could very well kill me. I'm scared. I don't want to die.
I've dealt with my fears over these past few years by writing. I write about my own experience and I try to laugh at it, make it into something funny and ridiculous, which it often is. Give me three snaps in + formation. Okay? Sassy! I express sarcasm and rage, disappointment and ennui. I scream and yell, giggle, snicker, guffaw and carry on. Writing about it in all its lack of glory has removed me from it in a way. The process protects me, takes it outside of myself. Yet ... I know it is a cover for my feelings of helplessness and terror and mortal dread.
Because I'm scared and I don't want to die. Does anybody?
I am afraid of dying alone. What's more, I am afraid of dying with people around me. I do not want anyone to see me all a mess. I don't want anyone to wipe my ass. I don't want anyone to feed me. I don't want anyone to see me broken and beaten. I don't want to be gross. I don't want to be a burden. I don't want to be weak and pathetic. I don't want to die, I don't want to!
I don't want to be alone, I don't want to be with people -- a bit of problem. I will not be pleased!
PBS recently ran a fantastic series by Bill Moyers called "On Our Own Terms." It sensitively and beautifully explored end-of-life issues with terminal patients. Issues like palliative care, hospice, hastened death, the physical, emotional, and spiritual components of dying, the financial aspects, and how we as a society can do it all better. We know how to keep people alive, "cure" them, but we don't have a real good handle on helping people to die, which, after all, is a defining experience of the human condition. We don't know how to help people die peacefully and with dignity. Dying is seen as a failure. A scary, awful failure.
Each night the series ran, I cried, and I cried hard. It was painful and extraordinarily difficult to watch, as much as it was lovely, and absolutely necessary to watch. It made me realize I need to think about how I want to die before I get to that point, before I am in a crisis and can't think about it clearly.
After the second night's installment ended I was bawling -- from the stories portrayed, and for myself. So I called my ex-lover in Washington, DC in mid-sob. We had ended our relationship as boyfriends a month previous, and I was still grieving, am still grieving, the end of that phase of our connection. But I felt like he was the only one who I could stomach thinking of being around me at my worst, the only one who I wouldn't be ashamed and horrified to see me at my worst. I asked him if he would still be there for me when I get sick, when I get really sick, when I need someone to take care of me, when I'm a pathetic, weak mess and can't wipe my own ass.
"Of course, Jim. I will be there for you ... I want to be."
I cried some more, from the relief his warm and open heart gave me, from the thankfulness welling inside me. Dying is never easy or pretty, but knowing someone will walk beside you through the process makes it transcendental.
Not that I am unafraid, but maybe just a little less.