The latest entry in Hayden’s Diary took me back several years to a time when I, too, was having difficulty reconciling promising new lab results with my acceptance that death was imminent.
Here’s a note I sent to Hayden after reading his journal today:
I know what getting good test results can do to us. I, too, am a survivor of physical and sexual abuse (ed. note – by a school teacher and complete stranger respectively) – something I have only recently begun working on again in counselling. The pain led to drug and alcohol abuse.
Our self-image, so cruelly imprinted on us by our abusers, need not rule us the rest of our lives. I deserve to survive HIV/AIDS as much as anybody. So do you. The “carelessness” which led to my infection was part of that very early imprint. I have proven myself to be a fighter since then, however. Something tells me you are too!
Your piece struck home with me because I wrote something for a talk I gave, in 2001, which echoes your sentiments. I share excerpts below.
It’s been about twenty years since the very first reported cases of what we now know as AIDS. In February of that year – 1981 – I “came out” to my family as a gay man after a long inner struggle. I did it in the form of a letter to my parents, carefully crafting what I wanted to say. Mom and Dad phoned me as soon as they had received the letter to reassure me of their abiding love for me. I still remind them that, even today, many parents don’t respond with such love.
The few years that preceded my disclosure had not been among my best. Away from home at college, I was taken under the wings of a very conservative church. I later learned that this had been more upsetting to my liberal-minded family than my coming out was to be! In fact my older brother had come out to my folks himself four years earlier, but had not included me in his confidence at the time – and who’d blame him?
Self-abuse, reinforced by that church’s fundamentalist dogma, also was nurtured in the gay bars where I lived a double life of “community”-seeking.
The 1980s brought me freedom within my family, but I was not free inside yet, which was manifested in what I’d later identify as problem drinking – not an uncommon closet in its own right.
I finally stopped drinking in 1988 after I fled to Toronto, this Emerald City I could see on a clear day from way over in Port Dalhousie.
Gaining early access to AZT had been a lengthy activist community struggle here and so, in 1990, I got tested for HIV because I wanted to avail myself of whatever I could in the event that I was positive. Well I was positive, and no amount of preparation could have softened the impact of finding out. It’s been shown that I had sero-converted the previous May.
That little meeting with Mom and Dad was in the summer of 1990, a few months before I left full-time work.
By 1993 my CD-4 count had steadily fallen to just 10. Normal is in the upper three-figures. I was grounded by a bout of cryptosporidium, the same bug which has recently been in the drinking water of Saskatchewan. I began assembling a home hospice care team, of sorts. My specialist casually tells residents on their rounds today that I nearly died. This condition dragged on for the better part of three years.
Aside from weight, I lost many friends – some very close friends – during this time, several of whom lived in my housing co-op. Jim and I lay beside Terry as he slept away to his death. Less than two years later Jim’s family and friends gathered around his hospital bed as he, too, died. These deaths were significant, not just because they were very dear friends, but also because I felt an incredible sense of privilege to be with them in those last moments. I felt a certain, comfort, too, well on the way – so I thought – to my own funeral. Countless more deaths were to follow, however.
I guess I wasn’t done.
In 1996 I was a delegate to the XI International Conference on AIDS in Vancouver, which opened my eyes to the overwhelming – but not
insurmountable – problem of AIDS in sub-Saharan Africa and other parts of our neglected world. (It’s that neglect which has to be overcome!)
The cryptosporidium eventually reversed itself, only to be replaced with intolerable side effects of promising new medications, which I desperately took anyway. For a couple more years I swung between death and life, planning to die but hanging on.
This spiritual crisis – realizing that I did not know when I was going to die, yet being afraid to fully live after so many preparations to do otherwise – led me to problems potentially far worse than alcohol had ever been. Spiritus contra spiritus. Fortunately, after just a few days, I came back from the abyss. That was my wake-up call. I pushed the “Reset” button. (This is the toughest closet I hope I ever have to come out of!)
In January of this year I radically changed my regimen of medications – not before a lot of apprehension. As of my last test, however, my viral load is “undetectable” for the first time since such testing began. This does not mean that I am now HIV-negative. But I’ve been granted a reprieve for today.
Yesterday was the “Pride and Remembrance Run”. Thanks to many of you, I raised thirteen hundred dollars. I ran – it’s more commonly considered a jog – all five kilometers!
From 1993, with ten T-4 cells, to running five kilometers in 2001!