Leaving Unit 503 upright


I am surrounded by boxes, both packed and empty. This week I am changing units within my housing co-op, moving house for the first time since 1992.

When I re-located to this building 23 years ago I thought, with good reason, that my death was imminent; that I would be here a short time before being discreetly carried out, feet-first, in a black bag – as had been the case for several other friends with AIDS before and since.

Diane Frankling Co-operative Homes, formerly Bleecker Street Co-op, has historically given priority for its rent-geared-to-income units to people living with HIV/AIDS, persons with mental illness (I am, therefore, dually qualified) and women escaping abusive relationships.

Just one floor up and across the hall, dominant morning sun will be replaced by the afternoon’s; plants will need to be re-positioned accordingly. Rather than a view of Cabbagetown roof-tops I will look on to another apartment building and, to my left, a partial but exciting view of Toronto’s impressive skyline.

While I have purged a lot of stuff, and packed quite a bit more, the move just one floor up has me in a sense of suspended animation. Clothes remain on hangers because, well, they can be carried upstairs just like that. It’s the same with my plants.

What I can only pack figuratively are 23 years of memories from here – the early house parties, the cats which I have loved (Sujata is only beginning to suspect we’re up to something), the recovery from my 2003 crash (John Kerry, I so relate to your broken femur!), and the guests and uninvited who have plopped down on the dump-bound sofa.

The weight of these years is affecting me emotionally, positively and poignantly, but it is a marker of the new era of HIV/AIDS that I am leaving Unit 503 walking upright.

Re: How a change of heart led to a backlash from the ‘Church of Nasty’


How a change of heart led to a backlash from the church of nasty

Dear Mr.Coren,

I have been a follower, if not always an admirer, for many years.

Your change of heart, more quantifiable with each successive column I read from or about you, has touched me a great deal.

Suffice to say I weathered some of your former comments, written or on CTS, no worse for wear but, so convincing were you, I find I need to pinch myself to take in how you have changed.

I am by no means a model gay citizen. A recovering alcoholic, HIV-positive for 26 years, and a gay rights activist since 1981, my journey seemed to be at right angles to yours. I don’t know that I have ever scorned you in public but, to the extent that I have resented you, I apologize. I nevertheless admired the strength with which you held your convictions.

Please work on Dr. McVety ;-)

All the best,

Kenn Chaplin
Toronto

World AIDS Day 2014 has come and gone and something had me rattled


Here’s an excerpt from my Facebook feed today after I heard Shaun Proulx on CBC Radio’s Metro Morning referring to his blog on HIV Divorce.

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I have AIDS, and have had for many years. I can’t seem to walk that back, to HIV only, so I think of myself as surviving HIV/AIDS. While HIV may never lead to AIDS for some, for other old timers like me that genie seems out of the bottle. I’m rattled by Shaun Proulx’s call for a “divorce” between HIV and AIDS because they are linked and to leave AIDS apart feels further stigmatizing.

Vera Ingrid Tarman, Clare Nobbs, Marie Robertson and 12 others like this.

Lori Knight-Whitehouse See my comment in one of your later posts.

Kenneth G. Chaplin Saw it – and thanks!

Sandra Millar In my opinion, those of you who have been long-term survivors should be “revered” (is that the word?) because you have been through hell to keep going. What with changes of meds that cause your body untold havock and struggles to keep going, with every day a hardship, medically, emotionally and financially! The younger generation who are walking on your back, and others like you need to spend a day with you, to be even begin to have an opinion! And this from a friend and ally, who knows she has only scratched the surface of what this terrible disease does to this living with, and those affected by, who journey with friends whose struggle still ended in death and those friends I know struggle every day…with all the above and more, including some with survivors guilt. I rest my case, for today…but wish I was able to put this on everyone’s post. I KNOW that if I had to walk a mile in your shoes, I would not be so strong or resilient! My thanks for being you – to you and all the others I know…and have known, as just because they died didn’t make them any less in my eyes! hugs, Sandra Millar

Karen MacKay Llewellyn Wanting to affirm the remarks made by Sandra. You have walked the walk with such courage, Kenn. It has been and continues to be so challenging. You have taught us all so much by permitting us to accompany you on this journey. I am ever so grateful to have been invited to share in the struggle and the triumphs. Blessings, my friend!

Tammy Leslie hey buddy xxxxxxx

Kenneth G. Chaplin Such a gratifying feeling to read your support, Sandra Millar and Karen MacKay Llewellyn. Overwhelming!

Paul R. Gilroy Tx Kenn, I am glad to have the opinion of someone (yours) who knows and has experienced the full dimension of HIV / Aids and its impact. I had the same thought that the two are inseparable listening to Sean on the CBC this morning, it seems to me to be wrong to consider that HIV and Aids can be so casually divorced.

Clare Nobbs I heard the interview on MM this morning and was uncomfortable with what SP was saying. Didn’t seem right. It was an argument of privilege to me – and one that was filled with holes. Oftentimes, I think, such arguments come from internalized struggle. And that is not a good place to speak from as it is using the oppressor’s tools against one’s own/self. I can’t say I’ve delved into this too deeply, but I can say that I have the deepest – and fondest – respect for you, Kenn, and the road that have walked these many years I have known you. love, peace and respect to you.

Kenneth G. Chaplin Oh, so many hugs for and from Paul R. Gilroy and Clare Nobbs. Thank you. I have to remember that health outlooks are much different to today’s newly diagnosed by which I mean post-drug cocktail and the simpler treatments nowadays. Privilege, Clare, yes that rings true.

Lunch


I planned dessert first today after seeing Wanda’s Pie in the Sky picture on Facebook this morning.

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I walked over to Kensington Market on a near-empty stomach and plopped myself down on the patio at Caplansky’s Delicatessen on College Street:

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I was impressed with the way the water was delivered:

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Either I was hungry or the portions aren’t as big as they are in Montreal because I had no trouble finishing this smoked meat on rye with French fries:

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Then it was down the street and through the market to Wanda’s Pie in the Sky for my little slice of pumpkin cheesecake:

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I guess you could say I had a full tank for the walk home.

The certainty of uncertainty


In my ongoing quest to get to the bottom of my annoyingly reduced sleep, I received the results of a recent MRI of my brain when I visited my family doctor yesterday and the report was clearly not written for me to comprehend.  Even my doctor was at a loss with some of the language but he concluded, “At least you don’t have a brain tumour,” which was more than I could deduce from this:

MR brain

Clinical history: New onset central sleep apnea.

Multiple sequences were performed through the brain.

The splenium of the corpus callosum is absent and colpocephaly is present.  There is a 1.2 cm gray matter heterotopia along the lateral wall of the trigone of the left lateral ventricle.  There is thinning of the optic nerves, optic chiasm and optic tracts.  The fornices are also quite thin.  The mammillary bodies are small.  The pineal is quite small.  The entire ventricular system is larger than normal.  There are mild microangiopathic changes in the hemispheric white matter.  There is a prominent cisterna magna.  There is mandibular hypoplasia.  There is reversal of the cervical lordosis.

Conclusion:

There are numerous developmental abnormalities of the brain as discussed.  The predominant abnormality is colpocephaly with absence of the splenium of the corpus callosum.  Of note is the presence of a gray matter heterotopia.

*****END OF REPORT*****

Some of the ‘abnormalities’ may stem from my prenatal and first couple of years of life.  ” Hydrocephalus Arrested” is how my mother recalls the episode being summed up by doctors at Montreal Children’s Hospital.  (Hydrocephalus is accumulation of too much cerebrospinal fluid in the brain.)  Outwardly my head was disproportionately larger than my infant body, leading me to sitting up and tipping over, occasionally knocking my head.  That it was “arrested” was of great relief to my parents because two children of two different cousins of my mother had been born with the same condition.  One died, the other spent his shortened life in a wheelchair so one can understand how worried Mom and Dad would have been for me in my early months and years..

I’m guessing the brain’s way of retaining all its history may be partly responsible for the gobbledygook in the MRI report but I’d like to hear it from a neurologist’s mouth, rather than via the cryptic language quoted above.

Sleep, no longer taken for granted, will soon be improving – hopefully


Early this month I had electrodes taped to my head, neck, chest and legs, then I was wished a good night for a sleep study to see why suddenly, to me at least, I couldn’t get a decent night of shut-eye.

The results, which I received on Monday, showed that over the course of the six to seven hours that I slept, however intermittently, my breathing stopped briefly “like you were swimming underwater” hundreds of times.

This is apnea but not the most common type of respiratory apnea; mine is linked to the brain, which “forgets” to signal to breathe, and is known as central apnea.

The news flooded over me faster than I could think of questions but here’s what I know.  I’ll be forming a very close relationship with oxygen each night, I am having a brain MRI this coming Monday at Women’s College Hospital, I go back to see the sleep doctor on August 29, then I meet with a neurologist on the third of September and with my family doctor the following day  It’s the most intensive medical care schedule I have had for quite some time..

I’m a little nervous.

A new low


“How long have you been wasting?” the chiropodist asked me a couple of weeks ago as she updated a history on me.

The starkness of the verb, however accurate, stayed with me.

I’ve always been thin, I said, but my weight has been falling a bit since last fall.

Fast forward to preparations for a bone density test in Women’s College Hospital’s shiny new facilities today.

I stepped up onto an equally shiny, new, digital scale.

Height: 6’3″.
Weight: 122 lbs.(just over 55 kg)

Wait, what?

On my worst weight dives I’ve never been below 130. Even at my usual 145 I’m off the BMI chart.

122?

I’m accepting fattening dinner invitations.

Another change to “Mr. G’s eye exam”


 Mr. G’s eye exam has been changed yet again so that the antagonist, though dead for more than a decade, might only be identified by his last initial and the responsibilities he held – not by full name nor school.

I’m doing this following some brief correspondence from a classmate who wondered, without suggesting anything directly to me, whether the man’s son, our classmate, might be unfairly wearing the sins of his father in this Google age. Also, as I have posted previously, something has shifted from a feeling of justified un-forgiveness to at least releasing my choke-hold.

R.I.P. Emma


(From 04-04-2014)

Following a “massive stroke” my beautiful friend of almost exactly fifteen years has left me. Emma (short for Emerald, the colour of her eyes) dropped to one side, sprawled on the floor, and let out a yell worthy of her Siamese ancestors.  Now my breaths draw up sobs and tears as the quietest kitten of her litter, who later went on to bite quite mischievously, won’t be waking me up tomorrow morning.  I love you Emma.

Image

Another important day for self-acceptance


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If I have learned nothing else about my bipolar II today, it is that I am certainly not the only one in similar circumstances who has found photography to be a healing past-time. Facebook is teeming today with some of the creative works of the bipolar support community.

Scrolling through various blogs and web sites I have also seen confirmed that we face many of the same risks to ourselves as my fellow survivors of childhood abuse, sexual and otherwise, most pointedly suicide. Which doesn’t make me suicidal. Just so you know. It’s just one of those options I have kept in my back pocket since it seemed clear, however wrong, that I would be dead of AIDS-related illness before the 90s were finished. Of course it’s also a tragic reality among those who suffer from post-traumatic stress disorder (PTSD), as we have heard about too often in connection with soldiers returning from Afghanistan or other battle-weary countries.

To be frank I am feeling very optimistic about my process right now. My p-doc is closely monitoring me as I add another “head med”, as I call them, to my cocktail of HIV, diabetes and bipolar medications. Spring has, for many years, been a time of hypomania which I used to refer to simply as an absence of depression. But it got much worse than a passive absence. When the cat (or black dog) is away, well…I played alot. Absent of depression, present with feelings I thought I could control, a deception of self that alcoholics often talk about, too.

I have often described the feeling of hearing the Bipolar II diagnosis, and the ways it fits me, as a day of sweet relief.  It was difficult enough to live with a lifetime of, let’s say, ultimately poor decisions; I was glad to hear a biological explanation for them  It doesn’t absolve me of everything but I have more compassion for myself and others.

Anyway the new med seems to be helping a lot. There are fewer sleepless nights, especially deliberately sleepless nights and I’m back on an even keel that I have experienced many times before on this journey.

Here is a series of three recent photographs taken here in Toronto, Canada, which I call Walking past colours

 

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Early morning, April 25, 2007


A prompt this week to write about something in a health-care context brought out this story which, despite having been told over and over in my head, had heretofore not made it down in writing.

It wasn’t quite 5:30 am and Janice was already waiting for me on the main floor of Union Station. Her husband Randy, who drove her in from Ancaster, needed to get to work but first back to his parents who had been drafted to baby-sit the two kids.

Janice and I hugged, exchanging exasperated greetings, then continued the conversation from late the previous night.

Our brother Craig had been walking to his home in Montréal’s Le Plateau neighbourhood, arms weighed down with food and other birthday party necessities for Claude, his partner of sixteen years who turned 54 that 24th of April 2007.

As Craig approached their three-storey stone walk-up, he tripped and fell, almost instantly smashing his head on the sidewalk. The owner of a small store directly across the narrow street saw Craig go down and rushed to his assistance. He was clearly unconscious, his head bleeding profusely. She called 9-1-1 and eventually Craig was taken to the city’s well-known Neurological Institute (think “I smell toast, Dr. Penfield!”)

Claude was contacted at St. Luc Hospital, where he worked, and he rushed to the Neuro calling my sister Lynn in New Brunswick on the way. Janice phoned me after hearing the grim news from Lynn. They decided that Janice and I should go and stay with Mom at this critical time; that having seen Craig and Claude just a couple of weeks earlier over Easter she would be upset enough without rushing to Montréal. So Janice and I took the train to Kingston and then a taxi the eighty kilometres or so to Perth. Janice phoned Mom from Kingston, gently breaking the news and giving Mom a bit of time to absorb some of the shock before we got there.

I couldn’t believe it. Craig and I had both survived HIV/AIDS since the early 1980s, watching many loved ones die. But not like this!

Over the next few days Lynn kept us up-to-date on Craig’s condition which was critical at best. When our uncle told us he had to be in Montréal over the weekend, and offered to take any of us along, Janice and I decided to go.

The drive up the steep hill of University Street from the Ville-Marie Expressway seemed to take an eternity, not that traffic was especially bad but because of the pits of anticipation in our stomachs.

George dropped us off at the front door and Janice and I found our way to the Reception area of the Critical Care Unit. The hospital screamed, “Demolish me!” with its cracked interior walls and historic odours. Lynn stepped out of Craig’s room.

“I just want to prepare you as best I can for how you’re going to see Craig,” she said. “Whatever descriptions I’ve been able to give you over the phone this week really don’t count for much in person.”

She was right and, one at a time, Janice and I found out.

I went in first, Claude walking over in tears with a big hug and kisses on both cheeks. He made small talk in his broken English until I asked a few questions.

One of the first things I noticed about Craig was how the swelling of his brain had inflated his face to a preposterous size. His eyes were wide open and couldn’t shut even if he wanted them to. There was a large flap of gauze on one side of his skull, taped at the top but left unattached at the bottom to let the emergency surgery to relieve swelling of the brain do its work.

The most telling piece of equipment in the room, which was expanding his chest and belly the way his brain swelled his face, was the respirator and its associated oxygen pump, which rhythmically forced air in and out of Craig’s chest because he could, and ultimately would, not breathe on his own.

The artificial breathing made up in noise what the strained but quiet breathing of Claude and I did not.

Claude stood closer to Craig and shouted the news that Janice and I had arrived, at which point he gave the “thumbs up” sign. I eventually saw that to be his only method of communicating, and I now wonder if it wasn’t just some involuntary impulse of the brain.

Claude and Lynn reviewed what doctors had told them. Craig was in no pain, and no pain relief was necessary. They could tell this by the fact that he wasn’t restless at all. It almost went without saying that pain sensors in his brain were damaged, if not destroyed. Even in their earliest assessments, the doctors had told Claude and Lynn that if Craig survived he would not be the same person.

Janice and I stayed for an hour or so and then we all walked back to Claude’s (and Craig’s) place on de Grand-Pré. It was a cathartic walk, one which we would repeat, through the edge of the McGill campus, around Molson Stadium, and up Park Avenue, cutting across Fletcher’s Field to avenue Mont-Royal and Boulevard St-Joseph.

When Janice and I again visited Craig the next day before our ride back to Perth, I had a very tearful intuition, if not realization, that this would be the last time I saw Craig.

One attempt to see if he could breathe on his own had already failed. Staff hoped to try, or at least Lynn and Claude were certainly going to encourage another try, in the next few days. We were all in agreement, as much as feelings can be, to accept the results.

Ultimately the attempt failed and, while Lynn and Claude were out of the room having lunch, Craig died on May 9, 2007 – six days shy of his fifty-second birthday which that year also happened to fall on Mother’s Day.

That unimaginable Sunday was spent travelling to Montreal with Mom for the funeral service the following day. Then on Tuesday it was back in to two cars for the drive to Perth where a sunset burial was held at Scotch Line Cemetery next to the plot owned by Mom and Dad.

Later that spring, Claude bought a headstone with Craig’s birth and death dates as well as Claude’s birth date. The inscription described Claude as Craig’s “compagnon de vie”, the first openly gay – and surely among the first bilingual – grave-markers in the town’s three or four cemeteries.

Chaplin Craig et Claude

Coming out as the end of a beginning


This morning on CTV’s Canada AM Kevin Newman, of Question Period fame, was promoting a very important segment on this weekend’s W5 program (Saturday at 7 p.m. ET) and, in the accompanying online article he wrote, “Coming out is toward the end of the process for our gay children” – when learning to accept it is just starting for parents. A very important insight, I thought, as I recalled my own process.

(This weekend’s W5 will not only include Newman’s gay son, Alex, but will focus on out gay athlete @ScottHeggart who I wrote about last spring.)

Kevin’s empathy and insights are quite remarkable, perhaps more so to any families who have not yet been faced with a child’s dramatic struggle towards self-acceptance, and “coming out (as) toward the end of the process for our gay children”.

By the time that I came out to my family in 1981, at the age of 21, I had been through a whirlwind of attempts to make peace with myself but, almost completely untethered and in the shadow of a traumatic childhood and adolescence, I had done so in the fog of abuse of alcohol and other drugs, and in a rampage of sexual activity at a time when HIV/AIDS was just beginning to permeate our collective conscience.  So much living before I could be sure enough to come out!  Notwithstanding the exceptionally loving acceptance of my family more than one reckless genie had been let out of the bottle.

As I look upon the rest of my life as recovery I am optimistic for the future of younger members of my community with helpful, empathetic media coverage and young role models and their families so willing to share their stories.

W5’s ‘OFFSIDE’ airs this Saturday at 7 p.m. ET on CTV, along with livechat at CTVNews.ca

AIDS is still here but so am I!


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.