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Arms Too Short to Box with God
My career has been as a dancer at Finocchio's, a female-impersonator club in San Francisco. I've performed as Sophie Tucker, Marilyn Monroe, Dolly Parton, Mae West, Rita Hayworth, and Wynona Judd. I'm thirty-three years old now, and I have AIDS.
I define the will to live in terms of the desire to continue, to see what's around the corner, and to have some semblance of a normal life.
The pleasures of life add to the will to live. I enjoy theater. I enjoy reading. And I enjoyed acting very much. It was still a job, but it was nice to work at something where I got to smell good and wear sparkley-colored evening gowns.
I got into it when I was very young. It was the only way I could actually get into the clubs. I had a baby face and, back in those days, all it took was some mascara and lip gloss, and I was a woman.
There are things that have boosted my will to live. Getting some good news about getting well I would definitely rate as number one. Comfort level is very important and could be number two. To be able to eat again is definitely on my wish list, even though all my life I've been heavy and have desired to be thin.
My grandmother is fond of the old expression: Where there is life, there is hope. But there's another expression: I'm tired of all that's ailing me and of not dying. There is only so much a body can take. The awful thing about AIDS is that when you just get over one thing, then there is immediately something else to knock you down.
You can be totally decimated. I didn't have the ability to eat, to feed myself, to get myself out of bed. I did nothing but vomit for nine and a half months and had temperatures between 103 and 106 degrees.
There has to be a time when you decide to give up. The body can only sustain you for so long, and you can only take so much. I have been with more than 180 people when they died, and that there is a point when you can look at them and tell whether they're ready to go. It's been said there comes a time in life when death becomes a friend. Death is just as natural as a shower.
Yet even when you're emotionally ready to die, there is an almost spiritual spark that just won't let you go if you're not really ready. That spark allows you to go through the bone-marrow taps, the surgeries, and the excruciating medications you have to take.
The will to live is intrinsic in us as human beings. I think it's what keeps people going after tragedies, holocausts, disease, and whatever else. With AIDS I may be losing my battle to live, but that doesn't mean necessarily losing my will to live.
One of the things I take comfort in is the fact that life is going to go on. The day I die, people are going to walk down the street and go to their jobs, and they will continue to do it for as long as mankind is here. That's life. It's somebody else's life. It's not yours. But it goes on.
You can get to a place where you think there is no hope, that there is no quality of life. I was there. I tried to cash in. I was willing to die, to just give up because of the excruciating pain. I attempted euthanasia twice and failed. I am alive, I think, because of my will to live. And I am also alive because my higher power did not want me to die.
I am convinced that a lot of the will to live is based on our own sense of pride. But along the way we lose our pride and say, "Okay, it's your will now, not just my will." You can't just do it on your own.
My will to live is God's will for me to live, because if God wants me dead, my ass is cooked. Like that great musical called, Your Arms are Too Short to Box with God.
I believe very strongly in the relationship between myself and a higher power. I live out my personal relationship with God. God is somebody who directs me and has a purpose for me in His universe. It is for me to discover what that purpose is.
I basically went to the wall and tried everything to stay alive until something finally did work. Protease inhibitors came on the market and saved my life. As far as body weight goes, I went from 220 pounds to 120 pounds by the time I finished the course of drugs. Now I weigh 162 pounds. I am very happy with this weight.
There is a fifteen percent failure rate with the protease inhibitors right now. It's not a magic bullet, but it's the closest thing we have had in the fifteen years since this health crisis began. I am very fortunate to be one of the people who is a true success story. My doctor says I have had one of the best responses to the protease inhibitors of any of his patients. I am basically back to normal.
Now I get up every day, try to do thirty minutes' worth of exercise on a Stair Master and eat just about anything I want. I am not concerned about the quality of what I'm eating, just the quantity. I eat all the ice cream I want. As I say, I used to beat myself up because I had a weight problem. but not anymore
My experience with AIDS has completely changed my direction in life. I am not sure what I need to be doing yet, but a lot of things happened to me when I was so ill, including near-death experiences and going deeper into the more spiritual side of my life. The whole process was excruciating. I wouldn't wish it on my worst enemy. But it has also been the most enlightening and maturing process I have ever lived through.
When she was dying, my mother told me, "Nothing matters in life but life itself and those who you love. The rest is bullshit." If I could make one statement, it would be, "Nothing matters in life but life itself and who you love." I have a sense of peace about me now that I didn't have before, a sense of spiritual comfort. And when you have internal comfort, it is a lot easier to tolerate outside discomforts.
I've lived my entire adult life with HIV. I've lost many, many friends and some lovers to this disease. It has been a genocide of my peer group. I have gotten some comfort and knowledge out of reading things by holocaust survivors, people who have dealt with this kind of multiple loss and trauma and had to face their own mortality at the same time.
Yet, after being devastated physically as much as I have been by this disease, it is really incredible to actually look with hope towards a halfway normal life expectancy. It is also scary.
The great thing about having gone through what I have gone through is that we will all have to go through it again. I'm going to end up dying from something some day. Hopefully, it will be old age. But I don't have to be afraid of dying anymore. Dying is not scary.
The will to live can overcome anything and, if it can't, it is because it is not meant for you to overcome it. You have a purpose in your life and you have a purpose in your death. There is an expression, "Let go and do it by God."
You can have all the money and material possessions in the world. You can be totally secure financially, but, if you are dying, you are in the same boat as somebody who has nothing. A person who has their basic human needs met and has the comfort of faith and the ability to accept and continue is much better off than somebody who is only materially wealthy.
I haven't worked in three years. Instead, I've been living off disability. Now, instead of just going back to work, I am thinking about going back to school. I want to be a nurse. I was inspired by the home care nurses I had. I wouldn't be alive if it hadn't been for their compassion and their positive reinforcement, their attitude of, You're going to make it. You're going to be okay.
There are other things I want to do too. Being an entertainer has given me the ability to deliver a message. There are many people in the gay community who still have not been tested for HIV. There are many who have been tested and, because of denial factors, don't seek active medical care. I want to be a positive role model for people in the gay and lesbian community, particularly in the HIV community, as someone who has accessed good medical care and been successful with the available drugs.
I'm glad my attempts to leave life didn't work. I am grateful that I am alive. I have something to learn and something to give. I believe that God has a higher purpose for me. I don't know what it is as yet. But it will come. It will be revealed.
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