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!!!

Letter to The Star Re: When free speech becomes hate crime (Letters, June 23)


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

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.

Meet Sujata, Russian Blue beauty


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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!

Drop-kicking HIV/AIDS stigma to the curb


“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…”

-Teresa Sarga

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

 

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.

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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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Post #1031: My latest ‘Aha!’ moment


I’m very close to finishing the book Survivor – Auschwitz, The Death March and My Fight for Freedom by Sam Pivnik and some two-thirds of the way through I was jolted by this passage:

We could have run, could have made it, could have reached the welcoming arms of the British, who surely wouldn’t fire on scarecrows wearing the stripes of a concentration camp? But we didn’t. None of us. And it’s something I’ve read about since in the memoirs of other survivors. The years of terror, of barbed wire, of electric fences, they never leave you. You turn in on yourself, hiding in the only Hell you know. Why? Because out there, in those fields and woodlands, across the ploughed farmland of North Germany was a world I didn’t know at all. I was just thirteen when the Wehrmacht invaded my homeland and in a way my life had been put on hold ever since. In a word, I was too scared to run away.

Almost an entire shelf of my book cabinet is stocked with various accounts of the Holocaust, a collection I started with Primo Levi’s Survival in Auschwitz on the recommendation of a psychiatrist I was seeing for post-traumatic stress that followed a serious accident in 2003.

While the ‘woulda, coulda, shouldas’ of Pivnik’s experience differ greatly from my own, I recognize my own mindset in how I processed difficulties in my childhood.  (By the time I was Pivnik’s thirteen years of age, I had experienced this example of the drubbing of a head teacher/principal in elementary school and the sexual abuse and subsequent exploitation at what I would now recognize as a sexual cruising area.)

I have long since absolved myself, intellectually at least, of any guilt in these matters.  However Pivnik’s laser-like identification of lingering fear – my fear, too, of the world – has amazing resonance with me.  It’s not the first time I have named fear as a foundational part of my emotional operating system, and I could quantify it in reviewing the hypomanic behaviour which has characterized my history with bipolar II, but to read Pivnik’s account is to affirm how I can relate my experience with what has followed.

(I still aspire to writing my life story, such as it is, told only in fits and starts in this blog.)