Living with AIDS:
A Personal Journey

by Terry Boyd
(died of AIDS in 1990)

(March, 1989) -- I vividly recall a night in December of January about a year ago. It was 6:00 P.M., very cold and getting dark. I was waiting for a bus to go home, standing behind a tree for protection from the wind. I had recently lost a friend to AIDS. From whatever measure of intuition God had given me, I knew suddenly and quite certainly that I also had AIDS. I stood behind the tree and cried. I was afraid. I was alone and I thought I had lost everything that was ever dear to me. In that place, it was very easy to imagine losing my home, my family, my friends, and my job. The possibility of dying under that tree, in the cold, utterly cut off from any human love seemed very real. I prayed through my tears. Over and over, I prayed: "Let this cup pass". But I knew. Several months later, in April, the doctor told me what I had discovered for myself.

Now, it is nearly a year. I am still here, still working, still living, still learning how to love. There are some inconveniences. This morning, just out of curiosity, I counted the number of pills I have to take during the course of a week. It came out to 112 assorted tablets and capsules. I go to the doctor once a month and find myself reassuring him that I feel quite well. He mutters to himself and rereads the latest laboratory results which show my immune system declining to zero.

My last T-Cell count was 10. A normal count is in the range of 800-1600. I have been fighting painful sores in my mouth that make eating difficult. But, frankly, food has always been more important to me than a little pain. I have had Thrush for a year. It never quite goes away. Recently, the doctor discovered the herpes virus had gotten hold of my system. There have been strange fungal infections. One was on my tongue. A biopsy caused my tongue to swell and I couldn't talk for a week making many of my dear friends secretly thankful. A way had been found to shut me up and they all reveled in the relative peace and quiet. Of course, there are night sweats, fevers, swollen lymph glands (no one told me they would be painful), and unbelievable fatigue. .

When I was growing up, I literally detested grubby, down-in-the- dirt sorts of work like changing the oil, digging in the garden, and hauling garbage to the dump. Later on, a friend, who was a psychiatrist, suggested I should accept a summer job at a lumber camp in the Northwest. He chuckled with sinister glee and suggested it might be a constructive emotional experience. This last year has been that constructive emotional experience I had avoided. Parts of it have been grubby and down-in-the-dirt and other parts have been life-changing. I cry more now. I laugh more now, too.

I have come to realize that my story is not in any way unique, nor is the fact that I will most likely die within two or three years. Like many of my brothers and sisters, I have had to come to terms with my own death, and the deaths of many of those I love.

My death will not be extraordinary. It occurs daily to others, just like me. And I have realized that death is not really the issue at all. The challenge of having AIDS is not dying of AIDS, but Living with AIDS. I didn't come to these realizations easily and, unfortunately, wasted precious time caught up in what I thought was the tragedy of my impending demise.

I still have a difficult time when someone I love is sick, in the hospital, or dies. We have all been to far too many funerals and many of us don't know how we will be able to find any more tears for the ones we continue to lose. In a story published recently about a man who lost his partner to AIDS, the man says that after Roger had died, he thought that just maybe the horror was over: that somehow it would all go away and everything could get back to the way it once was. But, just as he starts to think the horror is over, the telephone rings. I am crying as I write this because I have a very vivid picture in my mind of my partner making those same telephone calls.

We all know about the discrimination, fear, ignorance, hatred and cruelty attached to the AIDS epidemic. It sells newspapers and most of us read the newspaper and watch television. But I think there are a few things we continue to neglect.

Jonathan Mann, Director of the World Health Organization's Global Program on AIDS, recently spoke in my city. The World Health Organization (WHO) estimates that at least five million persons are currently infected with HIV. They also believe that twenty to thirty percent of those persons will go on to develop AIDS. Some medical experts at Walter Reed Hospital believe all persons infected will eventually develop symptoms.

advertisement

In Missouri, 862 cases of AIDS have been reported since 1982. If the WHO figures are applied, the number of those who are currently positive or who will go on to more serious symptoms is staggering. Our state of health reports that an average of six to seven percent of all those who are voluntarily tested test positive for the virus. Our local and state health departments are preparing for an explosion of cases in the next few years.

We often neglect those who test positive (those who are seropositive), but have no symptoms of AIDS. It does not take much imagination to envision the fear and depression that can result from learning you are infected with the AIDS virus. And, then, there are the families and loved ones of those who are sick or infected who must struggle with the same fears and depressions, often without a whit of support.

continue

Last reviewed 10/05.

topp ~ story 1 2 3 4 5 6 ~ send page to friend