“The true meaning of life is to plant trees, under whose shade you do not expect to sit.”
“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.
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!!!
From among the throngs walking past, largely ignoring him, a street preacher standing with a mic and an amplifier in front of Old City Hall called me out leaving the opening ceremonies of World Pride taking place at Nathan Phillips Square last Friday. Punching his words from between what he considered to be biblical condemnations of the gay 'lifestyle', he interrupted himself and pointed at me, yelling, "And look at you...", sizing up my 6'3", 122 lb frame as bearing the strains of HIV (correctly, for what that's worth), directly using me as an example of what happens when, as he sees it, God is disobeyed. What place does this sort of degradation have in our public streets? Even the most flamboyant parts of Pride Week aren't designed to shove hate in the faces of those who do not share our particular love of life! Kenn Chaplin Toronto
“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.
Weight: 122 lbs.(just over 55 kg)
On my worst weight dives I’ve never been below 130. Even at my usual 145 I’m off the BMI chart.
I’m accepting fattening dinner invitations.
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.
Today marks eleven years since the beginning of events which form the basis of my autobiographical piece entitled Chopin, Roman Polanski and a cab.
I will attempt to stay home after dark.
Sujata, the name given to her by the previous human in her life, Kevin, is Sanskrit meaning “from a good family origin”; “Su” means “good”, “Jatakas” means “of good origins” or “well born”. The breed was also known as “archangel” in its early generations.
Sujata has been hiding whenever I’ve given her the opportunity this evening. I’m really looking forward to getting to know this beauty!
“This December I found a mass the size of a cantaloupe in my lung…I used social media to express my feelings without having to burden my family and friends.
I’d like to write a feature…that explores the way the Internet has changed the way we view illnesses, both visible and invisible, and how it’s changed our acceptance of grief and death…”
As I first reported on Facebook last week I had the opportunity to be interviewed by Teresa Sarga, a journalist and blogger from Syracuse, New York, about blogging as a person living with HIV/AIDS “…and more”. The issue of stigma is being unearthed and critically examined more and more lately, which is a good thing.
I’ve decided that, so long as I am open, I am not letting stigma thwart me.
Stigma surrounding HIV/AIDS, in my case, began with me.
If anyone deserves AIDS, I told myself, long before I tested positive for the Human Immunodeficiency Virus, I do.
What a statement with which to live my life.
Fortunately I am able to unpack it:
-as if anyone deserves AIDS (or cancer or heart disease or diabetes)
-as if disease and illness discriminate
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.
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