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.