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.

I’m Thinking, “This is Going to Hurt!”: On ‘How Not to Deal with Grief’


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:

Guest Post – How Not to Deal with Grief

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.

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.

Why I’m Marching with ACT with Pride!


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My first encounter with ACT (AIDS Committee of Toronto) was in its early days operating over what at  the time was a KFC take-out restaurant.  Compassion and information deep-fried!  I was still living in St. Catharines, Ontario in those days, those early days of HIV and the upstart AIDS Niagara.  I was a bit of a pamphlet junkie, always looking for a new way to convey what limited information there seemed to be about HIV and AIDS.  ACT could be counted on for a variety of ways to disseminate such information, some of it with the blessing of government funders, some with a bit more of an independent streak out of necessity.

When I moved to Toronto, ACT had also moved to 464 Yonge Street, upstairs, north of College near the RBC branch which still exists today.  There I remember wonderful healing circles taking place, Sunday evenings  as I recall, where I learned the rudiments of Buddhism, mindfulness and Louise Hay words and songs (such as “I Love Myself the Way I Am”).

It was either here, or at ACT’s next move (to its present 399 Church Street address), that I began my volunteer work as part-time receptionist, fielding calls and in-person visits, enjoying an always-friendly rapport with staff.

Highlights of my care at ACT came in the 1990s when a certain senior nurse and sex therapist would make available her guest cottage in a  beautiful spot on Lake Simcoe  to support groups from ACT for consecutive weeks at a time throughout the summer.  I traveled yearly with the Recovery Group, so-named for our mutual support as recovering alcoholics and drug addicts.  In pictures of our earliest years, I am one only a couple of members to have survived.

ACT continues to figure in my life, even though I am no longer an active volunteer.  Sometime after this holiday weekend I expect to be matched up with an ACT buddy for the first time in several years.  This will be an old experience revisited, one which I very much look forward to.  I also pledge to become involved in ACT’s regular “condom stuffing” parties for outreach work, where kits of condoms and other healthy things are stuffed into plastic bags for mass distribution.

I never think about 30+ years of ACT without being grateful for having survived just as long, while remembering with such fondness the many who haven’t.  I miss you all.

HAPPY PRIDE!  HAPPY WORLD PRIDE TORONTO!!!