It was both an honour and a pleasure this past Monday to receive an award for 25 years of service at the AIDS Committee of Toronto’s Annual General Meeting. I must confess to feeling like I have drawn on more services than I have provided but the 25 years is amazing, even from a survival point of view! Here I am with ACT E.D. John Maxwell:
The assignment for this week (Sept. 28, 2015) at the Mount Sinai Narrative Writing Group was “Write a story about a decision you have observed or experienced.”
May 9, 2007
The indicators of Craig’s brain activity were not at all promising more than two weeks after his fall. He continued to feel no pain, judging by the lack of any discomfort or restlessness being shown. The time had come to try and remove his breathing tube, come what may.
The latest ambitious awareness campaign by the AIDS Committee of Toronto (ACT), #HIVnow, “asks big questions, puts forward honest answers and issues clear calls to action”.
The “Times have changed” theme comes to mind as I watch the slow demolition of 40 Wellesley Street East, a medical offices building where I learned of my HIV status in 1989 and received medical care there for several years. Hundreds – thousands even – of HIV/AIDS patients were seen in these offices at the height of the crisis in the early 1990s.
If those demolished walls could talk…
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.
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,
Craig Chaplin Memorial Award presented to United Church of Canada Moderator Gary Paterson by United Theological College Principal Philip Joudrey
In a crowded classroom at OISE a couple of weeks ago I listened politely as a woman told how she had been influenced so positively by a Toronto school librarian years before.
“I was going through a rough time – abuse and all kinds of shit at home,” she said.
“He spent a lot of time with me and I always felt better better after our talks.”
“Then he was murdered in High Park and my world crashed.”
Suddenly very alert, my mind raced back to a murder that had touched me deeply in June of 1985; my God thirty years ago?
A forty-year-old school librarian had left an end-of-year staff party and driven into High Park to see if he might find some opportunities for anonymous sex. Instead he found five drunken teenaged boys, ranging in age from 15 to 18, also celebrating the end of school, who had been heard earlier declaring they were headed to High Park to “beat up a faggot”. As Kenn Zeller walked past the youths, one of them stuck out a foot and tripped him . He managed to get up and run the 10 metres or so to his car but, after getting the door open, he didn’t make it inside. In the minutes of kicking and beating him around the head which followed, his increasingly lifeless form was left for dead. His car was then vandalized.
The five each pleaded guilty to manslaughter and were sentenced to nine years in prison.
“That was Kenn Zeller,” I said to the woman nodding. “I adopted the spelling of “Kenn” as a memorial to him. I don’t get the opportunity to tell the story behind it as much as I might like sometimes.”
His death was a catalyst for the Toronto District School Board implementing a program aimed at eliminating discrimination based on sexual orientation, and a foreshadowing of the board’s Triangle Program for LGBTQI youth.
Three Colleges – The United Theological College, The Montreal Diocesan Theological College and The Presbyterian College, Montreal – are gathering May 7 to celebrate their respective Convocations and 100 years together as the Montreal School of Theology.
The Right Reverend Dr. Gary Paterson, Moderator of the United Church of Canada, will be an honoured guest of United Theological College as recipient of the Craig Chaplin Memorial Award, named for my brother who died in May, 2007.
Craig’s loved ones marvel that his Award, to honour the achievements, projects and ministries of openly LGBTQI persons, will be going to the spiritual leader of the Church less than a generation after the historic approval of LGBT ordination in the United Church of Canada. How thrilled Craig would be!
In a letter to UTC Principal Philip Joudrey, confirming the terms of reference for the Award, Craig wrote:
“…it is my intention and desire that this award be presented in recognition of the particular ministries of (LGBT) people both within the formal, organized structures of the Christian Church and without…choosing to honour those whose life’s work has been particularly distinguished in its clear embodiment of such central Gospel values as personal courage and integrity, life-affirming faith and spirituality, an unswerving commitment to social justice and a sustainable environment, and solidarity with those who are poor or marginalized.”
Additional Convocation honours will be bestowed by the other participating colleges and the Convocation Address will be delivered by renowned United Church of Canada theologian Douglas Hall.
To be held at the Church of St. Andrew and St. Paul, on the edge of the McGill University neighbourhood, this will be the first joint Convocation of the three Colleges – and marking 100 years of The Montreal School of Theology is an occasion for a grand celebration!
That is all!
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.
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.
“The true meaning of life is to plant trees, under whose shade you do not expect to sit.”
I planned dessert first today after seeing Wanda’s Pie in the Sky picture on Facebook this morning.
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:
I was impressed with the way the water was delivered:
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:
Then it was down the street and through the market to Wanda’s Pie in the Sky for my little slice of pumpkin cheesecake:
I guess you could say I had a full tank for the walk home.
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:
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.
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.
From my friend Betty Ann on her Facebook page:
“This article deeply moved me…as I suspect it will for any of you who have been impacted by the kind of grief associated with multiple loss, deaths due to overdose and or HIV/AIDS. Rather than just clicking on “like”, can you write a few sentences in a comment? Maybe just something about how this article landed with you? Guess I’m lookin for a little peer support here…”
I know there are many stories related to this piece which could be written. Don’t be afraid to jog my memory or ask a question.
I URGE you to click on the following link and read:
Remember those days when we couldn’t decide how to go to a funeral and make sure a dying friend was okay? Open casket versus closed? Cremation versus traditional burial? Would it be okay to go a little over the top in church? Someone else is sick? I thought he’d killed himself.
“…those days…come screaming back out of nowhere. I don’t live with it; it lives in me. It is a part of me and makes me what I am. That does not mean I want it. I am not alone in this. And I am not alone in finding that loss accumulates and is sticky and hangs together like lumps of tar and sticks and sand on the beach after a storm.”
“…these thoughts, the ones of dead friends and loved ones, are in the heap in the back corner. They lurk behind the door with a skull and crossbones saying; “Fuck Off, Asshole,” in 72 pica. Then in smaller type: “You know who and what’s in here, so why don’t you just walk the fuck away?” And every so often I walk through that door for whatever reason and it takes days to recover.”
“People died around you. Repeatedly. Let me emphasize: Repeatedly. There were no protease inhibitors. No Truveda. Just blind hope, determination, anger, solidarity, organizing, guesswork and gambling on whether to take a drug or wait for the big one that will work — and die waiting. This was not a time of long-term sustainability.”
“I am not perfect. But I have found some happiness in my life, not by achieving resolution, but by acquiring wounds, then healing some and developing scar tissue that will always be there, and by just keeping going.”
My laptop feels too small for what I want to write. I need a full-sized keyboard to spread out my fingers as on the keyboard of a grand pipe organ. I know the feeling of not wanting to go through personal items and photographs of friends lost. But I also know it’s an irresistible tug sometimes. I more often than not know what it means just to still be here when I could have, should have been dead, with only analogies of Vegas or God’s perverse selection process as explanation. I reject both.
I know that “just keeping going” has taken a lot of courage for many people, so why not me, too? I accept that there have been times when it seemed much simpler to die than to just keep going. I’ve even wished I would have died long before now. But there are new things to work on, new struggles to wage, even while bearing all the scars of having nearly shit myself to death.
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.