Tapestry, coping and shame


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.

The circular isolation of self – my 1010th post


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.

Whispering “Help!” from the windmills (or silos) of my mind


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.

Re-visiting Windigo ( a poem I wrote about a place I loved)


I know I’ve posted this before but I ventured to submit it to Northern Cardinal Review, an online magazine I happened upon today:

 

Windigo

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.

 

Kenn Chaplin

(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.

There are at least a few, if not many, important people with whom I need to have my own conversation about…


…this!

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.

My 1,000th post! (with help from The Equality Mantra’s “A Letter to My Sons”)


What I really like about this is that it could just as easily have been said by my Mom or Dad. (They said and wrote almost exactly similar sentiments when Craig and I came out 31 and 35 years ago, respectively.)

So there you have it, according to WordPress and Price-Waterhouse accountants, my one-thousandth post!

AccolAIDS much appreciated!


Healthline editors recently published the final list of their favorite HIV & STD blogs and I’m pleased to let you know that this blog made the list, which can be found here (in no particular order).

I am very appreciative of this vote of confidence!

Kenn Chaplin is no defeatist; he’s brazen, energetic, gut-wrenchingly honest, and inspiring. This active blogger, political activist, traveler, and long-time AIDS veteran knows a thing or two about living with AIDS.

He fills his blog with jokes, personal stories, tributes to friends who have lost the fight, and lovely photos of anything he wants. Along the way, he educates his readers about life with AIDS. Kenn knows (and shows) it’s not always easy, but hopefully he also knows how important his strong, steady voice about life with AIDS is for the rest of the HIV/AIDS community. Go, Kenn!

Five Years Since a Critical Day One


It was an early night to bed on Tuesday, June 19, 2007.  I had absolutely no more drinking to do and decided that the last day of this particular spring was a bitterly appropriate day to reach out again for sobriety.  Ruminations of suicide the past few days signalled to me that it was nearly past time to get help.

Fortunately I had been down this road before, so I knew where to turn, but I had never been trying to also recover from as tragic a circumstance as the traumatic brain injury death of my brother Craig.

I was certain that I should have been the one to die, as if it was as simple as trading places.  Such was my state of self-worth.  I was sick of hearing anything – anything at all – about “God’s will” even if all that was meant was that, had he survived, Craig surely wouldn’t have had much of a life.

I was inconsolable, yet with a familiar reserve of  just enough life energy not to give up.

I had survived HIV, even a serious AIDS-related illness, since at least 1989.  Burying so many friends and acquaintances I had good reason to believe that I wouldn’t be far behind.  Yet I took every possible medication, right from the start, and as the more promising combination therapies came along I responded well.

In 2003 I had been struck by a cab, fracturing a femur and a wrist, and been hospitalized for five weeks during what became known as Phase Two of SARS in Toronto.

Then I developed signs of Type-2 diabetes, quickly becoming insulin-dependent.

In 2005, though, I took a rail and bus tour of Canada’s Maritimes provinces.  I count it among my trips of a life-time, completing my journey across Canada from the west coast to the east.

I had been clean and sober since 1998 but, in recent years, had not sought the support I needed to maintain my sobriety. I politely declined the offer of champagne as the Halifax-bound train departed Montréal.  A couple of days later in Halifax, however, following up on a wish to tour the historic Alexander Keith’s brewery, I made a conscious decision to accept samples of various beers and ales being offered at a most enjoyable céilidh.  I quickly became that single guy on the bus tour whose exploits provided morning entertainment for fellow travellers.  I could see the progression within days and will never forget the story of how I got lost in Charlottetown.  You know you’re loaded when…

2005 rolled into 2006.  I carried my bottles in a gym bag, lest any of my former acquaintances see me.

When I received news of Craig’s fall on April 24, 2007 (his partner Claude’s birthday), I sobered myself up and left Toronto.  The family was not going to see how I had fallen in my own way.  After staying with my mother for a couple of weeks following Craig’s death, I changed my train ticket to First Class (free booze) and headed back for Toronto.

That was May 24, 2007 – the beginning of the end of a month of hell until June 19 (my last drink) and June 20 (my first day of sobriety).

The first years were in the shadow of grief and loss.  Other than psychiatric help, which has shown good results, little else stands out for me aside from a lot of inner work.  Things have improved, certainly, to the point where I am looking forward to whatever I can make of life, having said goodbye to the worst ideations of death.

I begin a new day, a new year, with hope and gratitude.

Nine years older nine years later


It’s been so long I had to look up what SARS stood for (Severe Acute Respiratory Syndrome).

That was part of the underlying score as I spent five weeks in two hospitals starting nine years ago early this morning.

Why was I laid up?

Well an item from Montréal in this morning’s news brought it all back, except that I wasn’t in an argument when I was hit.

Some of the details I remember quite clearly, as I recalled in my story, but the twenty-four-to-forty-eight hours following my mishap have been wiped from my memory – calling my friend Karen, Karen calling my Mom, Mom calling me. I had perked up a little by the time my sisters and Craig called. My down-and-out time was spent in surgery and recovering from it – repairing my right femur and radius by “internal fixation” one at a time, mind you, but under the same anesthetic (these x-rays are roughly what mine looked like when all was done.)

From the moment the first fire-truck arrived until my last day at the rehab hospital on June 6 SARS, and the necessary but de-humanizing preventive measures against it, was a constant fact of life in Toronto. The TV movie made about it wasn’t far off the mark at all.

So nine years later, there’s been a lot of water under the bridge, but I still see the places on my leg and arm where the incisions were made and on days when my body aches those two spots tend to lead off.

Once upon a time living to see 2003 seemed an unrealistic dream, and that spring was quite a nightmare, but I remember lying on my hospital bed “bargaining” to hopefully walk again, use a cane for the rest of my life even, and, while I thought I had to do so for some time, that is no longer the case.

This mishap was the catalyst for a lot of therapy – and not just of the physical variety.  I became familiar with the idea that significant trauma can re-awaken (or rouse for the first time) past trauma.  I’ve done a lot of work in nine years, if I do say so myself.

So there’s my shot of gratitude for the day!

Another long spring walk in Toronto


Bleecker Street Housing Co-Operative

Wellesley-Magill Park

Wellesley-Magill Park

Steam Plant Lofts (part of the former Wellesley-Princess Margaret Hospitals)

Verve condominiums at Wellesley and Homewood

Public art on a utility box near Jarvis and Gloucester Streets (one of many in the area)

One of the former Gooderham residences, this one at Jarvis and Cawhtra Square

Magnolias on Cawthra Square

Toronto AIDS Memorial at Cawthra Square Park, behind the 519 Church Street Community Centre

519 Church Street Community Centre (“The 519”)

Former Oddfellows Hall (1891) at College and Yonge Streets

College Park, the former Eaton’s Store at Yonge and College Streets

A notorious Bay Street dive emerging as a boutique hotel

Walking the labyrinth at Bell Trinity Square

Osgoode Hall, Law Society of Upper Canada

Canada Life

Campbell House, the oldest remaining home from the original site of the Town of York, was built by Upper Canada Chief Justice Sir William Campbell and his wife Hannah in 1822.

OCAD University’s (Ontario College of Art and Design) Sharp Centre for Design, Will Alsop, archt. with Robbie/Young + Wright Architects Inc., is a box four storeys above ground supported by colourful pillars; it is often described as a tabletop.

The spire of St. George the Martyr Anglican Church near The Grange

The Grange (1817) behind the Art Gallery of Ontario (AGO) and now part of it, was built for D’Arcy Boulton (1785–1846).

Art Gallery of Ontario (AGO)

Victoria University, University of Toronto

“Crucified Woman” (1976) by Almuth Lutkenhaus at Emmanuel College, University of Toronto

Victoria University reflected in the Isabel Bader Theatre

Church of the Redeemer (Anglican)

The Royal Ontario Museum (ROM)

The Royal Conservatory of Music

Queen Alexandra Gateway, at the Bloor Street end of Philosopher’s Walk, next to the Royal Conservatory of Music, was built “To commemorate the visit of TRH the Duke & Duchess of Cornwall & York Oct. 10th 1901.” The Duke and Duchess later became King George V & Queen Mary.

The entrance to the Royal Conservatory of Music’s Koerner Hall

Scanned: my first post-positive lab results


I found this in a plastic-covered folder in my Rubbermaid file drawer:

My physician at that time, the late Ed Kamski, ordered these tests as a baseline after giving me the results of my “positive” HIV-antibody test. (He also told me that a blood sample taken about a year earlier, in May of 1989, had also been tested and was positive. I remember how sick I was feeling at that time.)

One of the early AIDS treatments, AZT, was starting to get some good press as a possible prophylaxis to head off AIDS-defining illnesses, also known as opportunistic infections. I had made up my mind that I would like to start AZT should I qualify. The benchmark for starting therapy back then was a CD-4/T-4 count at or below 500.  My very first result was 400.  Game on!

Twenty-two years later I don’t have the bodily memories of the shock I was absorbing – positive first, AZT-ready next.

I do remember leaving the doctor’s office and going somewhere – quickly – to cry.  Later that day I went to a meeting of friends, many of whom were either living with full-on AIDS or were in the early days of an HIV diagnosis like me.

AIDS was no longer theoretical.  HIV/AIDS quickly became my constant companion – with all of the smothering that can go along with such a relationship.

 

When I left work, Dr. Kamski suggested I look upon my time as my retirement (and predicted I might have ten years).

It’s been 22-23 years but I still do not take my health for granted.  However it’s only been a few years since I stopped feeling my death-due-to-AIDS was imminent.

Ending the week on a positive note


I checked in with my doctor today to get results from my latest blood tests and the news was all good!

CD-4: 310 (about the same as January)
viral load: undetectable
Hemoglobin A1c: .063 (down from .077)
Weight: 144 lbs.

So I’m good again until June, by which time I’ll have had some more routine, albeit neglected, age-related tests done.

Medical update: I could do better if ‘good enough’ wasn’t still good enough


It’s been quite some time since I had the run of tests for HIV and diabetes, in part because of my fear of the results, so today’s news was quite satisfactory with clear room for improvement.

My viral load, a test which measures the activity of HIV in my blood, is below levels of present-day detectability. That’s the goal of this test of primary importance.

The CD-4/T-4 count, a measure of the immune response to infections, is 350. It has been higher, and also much lower (10 back in the early 90s), so I’m hoping that I can see it go up again. (I think my personal best is in the 600s.)

On the diabetes front, my A1c hemoglobin test – ideally at 7% (0.070) came back at 0.077. I know there’s room for improvement and, frankly, was surprised I did that well.

All in all, while I had some apprehensions about getting the results today, I was pleasantly surprised. Oh and my “head meds” are at acceptable levels.