Second Letter

Second Letter from Amsterdam (1995)

Dear Readers:

I want to apologize for missing you in the last issue. Since my first article appeared in the premier issue of Wilde, I have been hospitalized two times. One of those times, I was in the hospital for about four weeks - much of which I don’t remember. I only know of that time what Wolfgang, a few close friends who visited from San Francisco and Los Angeles and two of my sisters have told me.

This situation all began after Wolfgang returned to Amsterdam from a short trip to Germany. He says that when he walked through the door I was sitting on the sofa, holding my chest. The first thing I said was, “I need to go to the hospital.” Four days later, I was in intensive care in the Amsterdam Medical Center (AMC).

I don’t remember the events that happened prior to Wolfgang finding me in that condition, and I know that if he hadn’t come home when he did I would have died. I was on a respirator for about seven days — of course, none of which I remember. I was basically in a comatose state. This coma was probably one of the things that helped the doctors to treat me successfully.

Wolfgang, two of my sisters and two of my State-side friends were there right away. Between them I am still learning things that happened. The staff in the intensive care unit, I am told, gave me excellent care. They are the ones who worked to save my life those first five days. The staff on the floor of the AIDS Ward were also great. Since I have been discharged, I am slowly learning more about what happened. I am still very fragile and my energy goes up and down. My last hospitalization was from March 6th to the 2Oth. It was certainly not as traumatic as the previous experience. Things are slowly coming back together.

I would never have thought in November of last year that I would be on a respirator fighting for my life the following January. I have been told since I’ve been home that the trauma from critical illness causes people to not remember much of the most painful events.

I believe this is true.

I had never been totally compliant with my medication.

I took AZT in the early days and stopped after about six weeks.

I couldn’t stand the headaches and nausea that it gave me. This was still when the dose was 1600 mg per day. Of course they found later that that dose was far too toxic and have now cut it in half. But I am taking all of my medications now. I had only taken a couple of Wolfgang’s Bactrim in December. It was certainly not enough to prevent me from getting PCP in early January.

It is no fun when you stare death in the eye, and you both try to see who will blink first. I won this time. I am not one of those PWAs (people with AIDS) who talk about how their life has changed for the better. But, when I found out that my T-cells were down to 30, it sent a shock through me, because it had brought me close to death. A month and one half later, I was fighting for my life. Weight loss and loss of appetite have been some of the major issues I have been having since February. But the worst for me was the period of depression that I had after that hospitalization. I can’t say that I don’t have bouts of depression now, but I am working on it every day.

All of this is the nature of AIDS. It is a horrible disease that I wouldn’t wish on anyone. But I am taking things one day at a time. Still, losing control of your body and sometimes your mind can break your spirit.

My energy is still not great. I have good days and bad days. The nature of AIDS is that you never know which way it will go. I can’t say that I will never get PCP again, or some other opportunistic infection. As it is, I was diagnosed with peripheral neuropathy two weeks ago. It affects the nerves in my feet and hands. It is very uncomfortable and the painful sensations you have never stop. It increases and decreases during periods in the day and night. And we know that it won’t go away and that there is no treatment for it. My legs have also become extremely weak. It is all something that I am trying to learn to deal with although it is not pleasant. So, now I use a walking stick and have something in my hand, over which I have some control, that helps me to get by and get around.

So, what is this all about, you may be asking. I guess what all this is about is learning to use a walking stick when you just don’t have the strength to walk without one. It is about life turning when you least expect it and learning to accept the shelter of a lover and friends because you can’t survive without them. It is about my body beginning a process of giving up the ghost and me learning to live with that.

Reggie Williams