I’m re-directing you here to my friend Aless’s web site. Aless has graciously taken over a World AIDS Day project I started – and has even named it for me!
Submitted to Aless.ca today
I find the anticipation, whatever the outcome, of World AIDS Day quietly overwhelming.
“Not much,” I replied to a friend asking what plans I had last night. I might as well have had dental freezing in my brain, such was the unacknowledged numbness.
When I think of World AIDS Day I think of, as a blur, the forty or, I’m sure, more friends and fellow travelers who died of AIDS long before, and some since, the chance to survive with complex medications existed.
It is such a blur that I do not wish to single any one out.
Nearly six years ago, a blogger friend in California reminded me of something I do not mention much about my family, and then it’s usually “someone else in whose footsteps I was following”. I always respected my brother’s own, non-blog, ways of carrying himself in public.
Let’s just say there was this guy I write about more than anyone else (me) with an older brother who, like me, is gay and has been living with HIV/AIDS since the 1980s. Both are openly loved and accepted by family, close and extended, and many friends.
When I “came out” to my parents in 1981 it was not a complete surprise when they revealed that my older brother had also come out to them a few years earlier. One of the reasons I had not been in on that, however, was the fact that I – at that time – was test-driving ways of suppressing my homosexuality, to the point where I joined a right-of-Baptist, left-of-Pentecostal church for awhile. The test-drive, as evidenced in my subsequent writings, ended in a high-speed crash into a spiritual wall. My internal emotional injuries were very serious.
After I came out to our parents my brother wrote me a letter (in those days before email and long before Facebook), another letter I wish I had kept. In addition to lending support and understanding, I recall the note offering some wise advice about the difficulties inherent in living out one’s sexual orientation in a gay ‘community’ which, at times, can seem like a very cruel world. (Rufus Wainwright, a favourite, profoundly captures this in his song “Poses”.)
To say that Craig and I became closer, after I had withdrawn from my ‘doth-protest-too-much’ stance against homosexuality, would be an understatement. However, to this day, I regret any actions that separated us during those times. The relationship thankfully evolved to being much more comfortable over the years.
I learned in confidence, in the mid 1980s, that Craig had been infected with HIV – news which Craig later shared with other family members.
With all of that background, I vividly recall having a picnic lunch, a few years later, with my Mom and Dad during a brief vacation I had taken deliberately to disclose my HIV-positive status to them.
This being 1990, my medicine bag only had AZT in it and yet it seemed like the heaviest thing in my back-pack that day. Knowing that I would need to take that capsule before the picnic party had returned to Mom and Dad’s home I now only recall these key moments of the conversation.
Kenn: “When Craig told you he was HIV-positive the best information he had, at that time, was that I was negative.”
Mom (sighing deeply): “Oh, don’t tell me…”
That was in the summer of 1990, a little more than a year after routine blood-work had first shown tell-all “counts” in reverse, certainly abnormal, proportions. (Those blood samples, from the spring of 1989, were later tested specifically for HIV and were found to be positive.)
That picnic seems like a lifetime ago. My parents and siblings gradually integrated this overwhelming information and were very accepting as I shared my story publicly, even via television and newspaper media. (One magazine article, originally meant as a simple tribute to my parents’ longstanding involvement in their community, included the traumatic events when my mother barely survived an attack of necrotising fasciitis – ‘flesh-eating disease’ – and how my father suffered a major heart attack as Mom was in the midst of her recuperation at home following more than two months of critical care hospitalization.)
In layer-upon-layer of irony Craig fell in April of 2007 and, tragically, hit his head, suffering irreversible brain damage. He died a few weeks later just days before what would have been his fifty-second birthday. Mourners shook our heads as we thought about Craig having survived twenty or more years of HIV/AIDS, quintuple bypass surgery just a year before, only to have a freak fall end his life so horribly.
I still carry Craig with me and, while we shared an AIDS diagnosis as well as our sexual orientation, he was definitely his own man and I miss him as much today as any other.
Last Sunday afternoon, Thanksgiving weekend, I was out for a walk in Perth taking some of the photographs I collected over my five days there. I was also slipping away from the family in order to listen to a radio program which included brief comments I had made by phone as invited by the producers.
CBC Radio’s Tapestry was airing the second part of a series called Coping and at about 15:49 into the program I am heard introducing myself, then speaking of how my bipolar II diagnosis was an “A ha!” moment for me in the context of living as a survivor of childhood trauma, addiction recovery, and living with HIV/AIDS since 1989.
I also said that the bipolar II diagnosis has allowed me “to have a little more compassion for myself” and, in turn, with others with mental health issues with whom I can more easily and comfortably empathize and suppress my self-criticism.
“I live on,” I said, “and live on in curiosity”.
The reason I felt I had to head off to my favourite café, rather than invite my family to listen to the program with me, is that they are not all up-to-speed on my bipolar II diagnosis nor, in some cases, the sexual abuse. In the case of my mother, I have withheld these because I have judged that she has had more than enough to deal with. Whether it is worth the secrecy may be another matter entirely.
Fast forward to my weekly group therapy yesterday, which I had missed due to travel last week and being ill the week before. It followed on the heels of my check-in with my psychiatrist in the same hospital during which I confessed that, due to financial problems over the past little while, I had been unable to pay my quarterly prescription co-pay of about $100 and had, therefore tapered myself off my medications – re-starting at the end of September after more than a month when my finances were back in limited order.
He urged me to be in touch with him should I ever run into trouble again (I had even bluffed my way through an appointment with him during the crisis) and to keep in mind that relapses could be very serious.
Off to group therapy I went where I broke down crying as I reviewed the past couple of months and spoke of the shame I felt in being short of money. It was of my own doing, I judge, because I had sought sexual release time and time again with the click of my TV remote at $9.99 plus tax per viewing. (More shame.) The financing – no worries until the bill arrives – was as seductive as any of the pay-per-view characters. There were equal amounts of shame in having dug myself into a financial hole, putting my health at serious risk, and the mental condition which I dared not speak of with my loved ones – despite all of their support for me in every other area of my life which many other families might not be able to tolerate.
I did manage to tell my family, as we packed down a splendid turkey dinner, that I had lost ten pounds in the past little while. What went left unsaid was how much less I had been eating and why.
What could I have done differently?
Certainly I could have flagged the financial problem with not only my psychiatrist but also my doctor and pharmacist. Heaven and earth might have been moved to make sure I had my meds. Instead I chose, in shame, to deal with it myself – the same faulty self-reliance that got me through the rough years as a kid.
I could have told friends what was going on. It would not have been too tough to borrow a hundred bucks for my meds.
No doubt I could spend time, honestly, openly and, more constructively, out of isolation with friends.
I have a small collection of turtle ornaments on a book-case. I relate to them, seeing myself personifying some of their characteristics – slow, steady and self-deprecating to a fault, able to withdraw, when threatened, to my own delusional safety.
Someone once told me that five bucks in your pocket often makes the difference between a good and a bad day. I would just add that it’s important to discern what’s best to do with it.
This is a good day. I refilled prescriptions, overdue by a month, the self-deprivation of which I know from experience may have already done me harm. Going without them, both mood and HIV-related, has been a strain, one which I have not shared. I find fault in myself without even trying.
My auto-correct will rightly call this “awkward phrasing”:
Had I not needed to pay off a pay-per-view bill (self-centered shame involved) that was through the roof, at least in part because of being without my bipolar II meds (self-centered stigma even mentioning that), I would have felt better. It is probably for this same reason, and a decrease in food intake (fitting the stereotype of those who make choices between medicine, food and, in my case, $9.99 pay-per-view movies), that I lost about twelve pounds since I was last weighed two months ago – still 6′ 3″” (1.9m) tall, of course, but now just 130 lbs. (58 kg) for a BMI of 16.2 (underweight being anything below 18.5). How my blood-work has been affected has yet to be revealed.
The first thing I did this morning, pay-day, was go out for a Subway breakfast sandwich (far too salty!) before picking up my prescriptions. (Nothing for breakfast was available at home.)
It’s a chicken-or-egg riddle – being without money which caused me to withdraw treatment of my mental and physical health or a lack of untreated mental health which caused me to be care-free about money. ‘Twas ever thus, except I have had enough repeat experience to know that one begets the other.
I have begun to track my every expense as a first step in budgeting.
Writing this has been a detached, left-brain exercise. Maybe if I read it enough I’ll begin to feel it.
Those of you who have followed me, be it through my writing, my tweets, or home from the convenience store will have picked up on the fact that I have a fair amount on my plate.
I’m a very slow eater.
I recently joined a support group for long-term survivors of HIV/AIDS – in my case it’s been no less than 23 years. Even more recently I quit the group when I convinced myself that there was something to the quizzical looks I was getting from existing supportive friends, surprised that I might have anything I couldn’t discuss with them.
Particularly those who were also HIV-positive; also long-term survivors.
It felt good to formally end my relationship, short though it was, with the “support group” and to tell them why.
I don’t want to compartmentalize my life any more than I’m ever convinced I have to – if at all.
I want to safely, sanely integrate the many facets of my life – which too often feel like they’re in individual silos – into something that I can present to anyone I choose.
To recap what loyal readers already know:
I am a survivor of childhood trauma at the hands of an elementary school head teacher/principal.
I was bullied – by him and by peers both in early grades and in high school. I survived.
In my adolescence I was sexually abused by strangers, i.e. more than once, in a part of my home-town that I would only, as an adult, recognize as a “cruising area” for men seeking casual sex with other men (or, since I was there, with boys).
I buried that sexual trauma until I described the first incident in the third person at a HIV/AIDS-related workshop in 1990, some eighteen years after it started.
Then I buried it again, for the most part, but it kept reappearing particularly in the context of dealing with alcohol and other addiction.
I sought support for the addiction but only occasionally mentioned the trauma(s), believing that help was not available as one-stop shopping. (It was also too much to deal with in the context of my HIV progression to AIDS-related illness, the support and care of friends who have long since succumbed, and my inability to stay sober for more than five to seven years at a time maximum.)
When my brother Craig died tragically in 2007, and I was drinking at the time even if not in the presence – not even the same town – of my grieving family I came to a critical point of despair. Thoughts of suicide both tormented and comforted me.
Earlier that spring I had considered running for political office. Me! On long-term disability insurance! I had also wasted the bulk of an insurance settlement from a 2003 accident as if I wasn’t going to live long enough to enjoy it.
I was assessed and diagnosed with/as (I’m not sure which) bipolar II, one step on the spectrum from the more notorious bipolar disorder or manic-depressive illness, as it used to be called.
Believe it or not it was a relief to get a better understanding of what had begun, to me, simply as an absence of depression – for which I had been treated since around the time I tested HIV-positive – and to make sense of what had clearly become episodes of hypomania and depression.
The cautionary experiences of my peers, plus the general stigma still associated with mental illness, have made it difficult to articulate all that I have been discovering about myself as I review the years but one thing is for sure: I can no longer just be a gay, HIV-positive and (to some a recovering addict) friend or relative to some while hiding the largely successful, but ongoing, treatment of my psychiatric illness. The silos drive me crazy – and anyone with a passing acquaintance of farming will know that silos can spontaneously combust!
I do not know to whom any, or all, of this is news. Please let me know. Maybe this is just a rant I occasionally need to let rip. My emotions are not helped by a temporary physical malady today but, then again, I know that’s what it takes to move me sometimes!
The bottom line is that I want to be able to describe the whole picture, even if I mix oil with pastels, chalk with water. The silos aren’t all filled at the same time, usually, but that’s just the point. I don’t want silos any more. Could you at least help me with a better analogy? I would be so grateful.
I know I’ve posted this before but I ventured to submit it to Northern Cardinal Review, an online magazine I happened upon today:
Ripples lick the rocks
As the pines and birch politely applaud
Gulls catching their petits déjeuners
In the waking lake.
Sky’s amethyst shroud cascades
Towards the western shore
And the water’s silky blue
Becomes the pewter and emerald of armour.
The fleeting storm rumbles to the west and north
Dragging a chair across a distant wooden floor
But our only thunder is from a train
Rolling to market behind its mournful whistle.
The winds shift, the shroud – like a chameleon -
Becomes soft pillows of gray and white.
Lake Simcoe’s armour is but a duvet;
The white top-sheets being turned down toward Windigo.
Once here, and with dusk approaching,
The sheets are smoothed, the pillows fluffed
And the sun sinks past the foot of the bed
Leaving colours of peace and wonder.
No sooner are distant pinks orange, and oranges purple,
Then a star pierces the darkening blue
And the trees begin to sigh, knowing the moon’s glow
Over Windigo will keep watch another night.
(July 30, 1993)
Kenn Chaplin is a Toronto, Ontario blogger, amateur photographer and long-term survivor of HIV/AIDS. Windigo is the name of a cottage on Lake Simcoe, north of Toronto, which support groups for people living with HIV/AIDS were graciously loaned, in the late 1980s and early ’90s, as a place of quiet retreat. Kenn was grateful to have been a part of several of these retreats. In one group photo he is the lone survivor, apart from the facilitators who – in the case of that particular group – were not HIV-positive.
It’s certainly not too early to think about Mental Illness Awareness Week
When I read the Ottawa Citizen article (linked above) I immediately thought, “Mom will have read that yesterday,” and what an opening it would give me to discuss my own mental health history with her.
Not long after sobering up five+ years ago, I was diagnosed with bipolar II and, although it might seem strange, the news came as a relief to me. It helped to explain behaviour, over and above (and below) drunkenness and depression, which had dogged me most of my adult life. The eventual absence – thanks to treatment – of depression, which became hypomania, went undiagnosed for so long because I quite enjoyed said absence of depression, despite the danger, stupidity and recklessness which accompanied it.
Of course, as my 1,002 posts here can illustrate – at least in part – there’s been more going on in my life than depression so, absent or otherwise, there have been many other factors contributing to my state of being and my sense of self.
I cannot deny, and quite enjoy reporting, that seeking help – even if it took sinking to “rock bottom” to do so – has me feeling mentally stronger than I have in a long time, the occasional extraneous screw-ups notwithstanding.
For that I am truly thankful.