Sunday January 13, 1991

 

Dear Deidre,

           

It has come time to find you again and update you.  Could you really be so stable as to still be in Philadelphia?  You could be married, you could have children; what a long time it’s been.  It has come time to write you with the news that I have AIDS.

           

Life goes on.  I have to deal with it every day in some way and the cavalcade of small complaints are a great nuisance.  I can’t imagine getting up in the morning and just being well.  At this point I’m certainly not at any stage of advanced deterioration.  The main inconvenience is fatigue.  I’m really sapped.  Ordinary daily tasks like doing the dishes or taking a shower can take the ginger quite out of me.

           

In ’86 I had surgery to sew up a hernia and in the course of compiling my medical history I advised the intern that I was at high risk for HIV but had not been tested.  So they tested and after three weeks or so I got a phone call from Infectious Diseases.  Could I come in for my results?  I was panic stricken; obviously I was positive and they have a policy whereby a real human being is there for you face to face.  So I was told the dreadful news by a well-intentioned little nurse.  In her explication of what might occur and statistics about how many go on to be symptomatic etc. etc. her misinformation was enormous.  I appreciated her intentions but she was more helpless than I.

           

I remained asymptomatic for three years after this, ’86-’89, but blood tests revealed a very, very low T4/T8 cell ratio, 0.2, and my T4 cell count itself was dropping.  We knew that the virus was not dormant, still I was feeling as generally healthy as I ever had been and it’s difficult to motivate a change of lifestyle when you’re not getting messages from yourself that anything is amiss, only data from the labs.

           

But then…, in August ’89 it was suggested that I go on AZT because my cell counts were so low.  I had been quite decided against AZT believing it to be ultimately destructive to my body and certainly it had nothing to do with healing my immune system.  However I figured I’d experiment for three months, and reconsider then, depending on its effects.  Off I went to the hospital for the prescription.  Ironically I had gone here first to have the hernia surgery but I wasn’t in more than ten minutes before I chucked it and got out.  What a grim and morbid atmosphere.  Nobody touching my body in that place.

 

I picked up the pills and began the dosage on a Friday.  By Tuesday I was weakening noticeably and cut out the drug.  Come the next morning I became the most violently ill I had ever been in my life.  Skyrocketing fever and chills where my whole body trembled epileptically and there was only one remedy, to get into a hot bath.  Vomiting, headaches; I was poisoned.  I could taste the metal in my mouth, I could smell it in the profuse, drenching sweats.  A week this condition lasted, but it so knocked me out that it was a further three before I felt recovered.  Whew!  At least the sickness had been an identifiable reaction to a killer drug and not my body run mad of its own accord.

           

Next, found a darkening spot on my leg, had it biopsied:  Kaposi’s Sarcoma.  That’s it, no more ‘maybe’, I am developing the syndrome, I’m a case.  The first couple of lesions quickly proliferated into five or six, and me and Kaposi have not looked back.  I’m up to twenty-five now, face, hands, legs, torso, neck, shoulders, backside, even on my testicles, and my palate is harboring four or five.  They’re unattractive things, disfiguring in the unnaturalness of their dispersion across an otherwise healthy looking body.

           

This is an ongoing trial.  There’s been no remission, only increase in size of what’s already there.  Ready for more?  I’ve got a million of them!

           

Octoberish of ’89 I began to feel something amiss in my lungs.  A subtle tightness.  Reported it to the doctor but he could hear nothing.  Developed a cough which over the next few months became incapacitating.  I don’t know where the mucous came from in such volume.  Constant fever, exhaustion, breathlessness; flights of stairs were murderous.

           

I didn’t pursue a diagnosis because I kept being told they couldn’t locate anything and besides this doctor was such an uncaring animal that I was afraid of his effect on me.  I always felt worse, psychologically, after a visit to him.  In short I let the situation go, stupidly, until I was so weak, so unretrievably ill that I couldn’t even walk to the bathroom without supreme effort and profound rest for an hour or two after the trip.  Little appetite so that at one point I looked in the mirror, being naked, and saw a cadaver from Auschwitz.  There was no flesh.  All hip-bone and ribcage and knees and elbow and clavicle.  Sunken cheeks, hollow sockets. 

           

Let it be said that throughout this I knew intuitively that this deterioration was not leading towards death and I was not afraid.  Though you can imagine the inconvenience.  This couldn’t go on.  Finally I short-cut the doctor and went straight to Emergency.  That same day I went through a vile procedure called a broncoscopy where they feed an anaesthetized rubber tube through your sinus cavity down into the lungs.  I endured.

           

I was prescribed a drug called Septra even before the broncoscopy results were in (the only sure way of determining whether pneumocystis pneumonia is present.  It was).  The drug had a remarkable effect.  Within a week I had appetite, I could walk with much diminished breathlessness; in two, physical exercise was still tiring but I wasn’t gasping for air; the cough was in rapid remission.  Week three I was drunk with joyful, overspilling vitality.  And I was ravenous.  Like I’ve never experienced