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.

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.

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

 

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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

 

1 2 3

Review (and a personal retrospective) – Behind the Candelabra


With only the most scant help from Google I have been trying to remember more about my personal, professional meeting with Liberace (“Please, call me Lee.”)

It was some time in the mid-1980s, while I was working at a St. Catharines, Ontario radio station, when the subject of last night’s premiere of Behind the Candelabra was making one of his periodic appearances at Melody Fair Theater on Niagara Falls Boulevard in Tonawanda, New York – a suburb of Buffalo about a forty-five minute drive from St. Catharines.

My first impressions of Melody Fair were that it had seen better days (and it has since closed, demolished in 2010). The same could be said for Liberace who, after all, was some eight years older than my father who would have seemed “old” to anyone else in their twenties!

The meeting was what I have since learned was a very routine set-up between journalists, celebrity-chasers, and their self-important subjects. My allotted time of ten minutes or so was no more, on less than anyone else in line claiming “exclusive” access from their particular micro-market’s point-of-view.

I had come out relatively recently and took it upon myself to use my time with a slightly dressed down version of himself to tease out Woodward and Bernstein-worthy details of his private life.

What did he like to doon his days off, infrequent though they may have been?

Spend time at one of his several homes. He liked to cook for his “friends” (none of the bawdy details I would have liked to hear, of course, and portrayed in Beyond the Candelabra and Scott Thorson’s palimony-inspired book.

That’s all I remember about our conversation – riveting I know – having been derailed in my aim of making news out of what was inevitably to be a fluffy entertainment piece.

I grew up feeling a lot of antipathy towards the flamboyant, yet conflicted (a self-professed Roman Catholic) and ultimately talented pianist. This was no role model I would ever want to emulate, should I ever own my own homosexuality.

His age, I suppose, would also have been a factor in his denial of the obvious.

It was, however, his denial of what ultimately killed him that left me feeling quite angry – with him and his church. He never acknowledged dying of AIDS, swearing everyone to secrecy, which of course illustrated the stigma of the times (worse even than now) in his over-the-top way.

I couldn’t separate my feelings for him as I watched last evening, which is not to say that I couldn’t also relate to the inner struggles while recalling my annoyances with him.

Michael Douglas had a hell of a job to do which I found to be well done and credible. Matt Damon also proved himself to be a convincing actor in a gay role and a sympathetic character. In a supporting role I thought Rob Lowe stole the show.

I will watch it again, while it’s still in the HBO lineup, and while I don’t necessarily expect my feelings for Liberace to change I know I am capable of seeing him – jewel-encrusted warts and all.

Lunch with Vito Russo


Disclaimer:  My memories have been assisted by Google and a piece of paper, 8-1/2″ x 11″ divided in half, on which is written the following:



After signing up for The Movie Network again recently, I came upon the film Vito: A Man For All Seasons.  I was immediately transported back to the early summer day in 1982 when I met the celebrated author, filmmaker and activist Vito Russo. It was at a very ambitious conference, at the U of T perhaps, put on by, among others, The Body Politic collective called “DOING IT! Lesbian & Gay Liberation in the 80s”.

Vito put to words, and obviously used film clips, what he had done in the book but had us riveted with laughter during the presentation and in the question and answer period which followed.

Because I was staying with a couple of the conference organizers for the weekend and, I’d like to recall, at 22 among the younger guys there I was invited to lunch with Vito – then in his 30s and a real looker!

We walked to a patio along the north side of Bloor, I’m guessing near Brunswick, perhaps Dooney’s.

This sheet of paper protrudes from my copy of Vito’s book “The Celluloid Closet – Homosexuality In The Movies” which had come out the previous year (as had I).  I described to him how upset I was that I had not remembered to bring the book along on my break from my then-dreary existence in St. Catharines.  Such, apparently, was the extent of my troubles back then!  He thought nothing of just folding a sheet of copy paper in half and writing the cute note.  This story goes with it whenever the opportunity presents itself.

While I’d like to launch into a tale of love unleashing itself into a passionate, long-distance relationship, as we sat across from one another, I can’t even allow my “based on actual events” note to take me there, as much as I’d like to.

He vented about Ronald Reagan.  (By comparison we were experiencing the second go-round of Pierre Trudeau, the Charter of Rights and Freedoms round at that, with Conservative Brian Mulroney only in our nightmares.)

The documentary inevitably moved to the beginning of the AIDS crisis and its eventual taking of his partner Jim Sevcik in his thirtieth year.  That same year, 1985, Vito himself was diagnosed with Kaposi’s sarcoma and died in 1990, just a year-and-a-half or so after my diagnosis.  But what a difference there has been, both in opportunistic infections and in our respective treatment options.

Vito went on to become a founding member of the media-monitoring group Gay Lesbian Alliance Against Defamation (GLAAD).

In 1987 Vito, Larry Kramer and ten others founded ACT UP!, the AIDS activist organization which has been at the centre of some of the biggest developments in AIDS anger, compassion and care.  A clip in the film is of Vito shouting,

“People are dying of homophobia.  They’re dying of Jesse Helms.  They’re dying of Ronald Reagan…AIDS is a test of who we are as a people!”

Given all he went on to do in his AIDS-shortened life I count it a privilege to remember the joy of that day on a patio in Toronto and the personal touch of his autograph.

Early morning, April 25, 2007


A prompt this week to write about something in a health-care context brought out this story which, despite having been told over and over in my head, had heretofore not made it down in writing.

It wasn’t quite 5:30 am and Janice was already waiting for me on the main floor of Union Station. Her husband Randy, who drove her in from Ancaster, needed to get to work but first back to his parents who had been drafted to baby-sit the two kids.

Janice and I hugged, exchanging exasperated greetings, then continued the conversation from late the previous night.

Our brother Craig had been walking to his home in Montréal’s Le Plateau neighbourhood, arms weighed down with food and other birthday party necessities for Claude, his partner of sixteen years who turned 54 that 24th of April 2007.

As Craig approached their three-storey stone walk-up, he tripped and fell, almost instantly smashing his head on the sidewalk. The owner of a small store directly across the narrow street saw Craig go down and rushed to his assistance. He was clearly unconscious, his head bleeding profusely. She called 9-1-1 and eventually Craig was taken to the city’s well-known Neurological Institute (think “I smell toast, Dr. Penfield!”)

Claude was contacted at St. Luc Hospital, where he worked, and he rushed to the Neuro calling my sister Lynn in New Brunswick on the way. Janice phoned me after hearing the grim news from Lynn. They decided that Janice and I should go and stay with Mom at this critical time; that having seen Craig and Claude just a couple of weeks earlier over Easter she would be upset enough without rushing to Montréal. So Janice and I took the train to Kingston and then a taxi the eighty kilometres or so to Perth. Janice phoned Mom from Kingston, gently breaking the news and giving Mom a bit of time to absorb some of the shock before we got there.

I couldn’t believe it. Craig and I had both survived HIV/AIDS since the early 1980s, watching many loved ones die. But not like this!

Over the next few days Lynn kept us up-to-date on Craig’s condition which was critical at best. When our uncle told us he had to be in Montréal over the weekend, and offered to take any of us along, Janice and I decided to go.

The drive up the steep hill of University Street from the Ville-Marie Expressway seemed to take an eternity, not that traffic was especially bad but because of the pits of anticipation in our stomachs.

George dropped us off at the front door and Janice and I found our way to the Reception area of the Critical Care Unit. The hospital screamed, “Demolish me!” with its cracked interior walls and historic odours. Lynn stepped out of Craig’s room.

“I just want to prepare you as best I can for how you’re going to see Craig,” she said. “Whatever descriptions I’ve been able to give you over the phone this week really don’t count for much in person.”

She was right and, one at a time, Janice and I found out.

I went in first, Claude walking over in tears with a big hug and kisses on both cheeks. He made small talk in his broken English until I asked a few questions.

One of the first things I noticed about Craig was how the swelling of his brain had inflated his face to a preposterous size. His eyes were wide open and couldn’t shut even if he wanted them to. There was a large flap of gauze on one side of his skull, taped at the top but left unattached at the bottom to let the emergency surgery to relieve swelling of the brain do its work.

The most telling piece of equipment in the room, which was expanding his chest and belly the way his brain swelled his face, was the respirator and its associated oxygen pump, which rhythmically forced air in and out of Craig’s chest because he could, and ultimately would, not breathe on his own.

The artificial breathing made up in noise what the strained but quiet breathing of Claude and I did not.

Claude stood closer to Craig and shouted the news that Janice and I had arrived, at which point he gave the “thumbs up” sign. I eventually saw that to be his only method of communicating, and I now wonder if it wasn’t just some involuntary impulse of the brain.

Claude and Lynn reviewed what doctors had told them. Craig was in no pain, and no pain relief was necessary. They could tell this by the fact that he wasn’t restless at all. It almost went without saying that pain sensors in his brain were damaged, if not destroyed. Even in their earliest assessments, the doctors had told Claude and Lynn that if Craig survived he would not be the same person.

Janice and I stayed for an hour or so and then we all walked back to Claude’s (and Craig’s) place on de Grand-Pré. It was a cathartic walk, one which we would repeat, through the edge of the McGill campus, around Molson Stadium, and up Park Avenue, cutting across Fletcher’s Field to avenue Mont-Royal and Boulevard St-Joseph.

When Janice and I again visited Craig the next day before our ride back to Perth, I had a very tearful intuition, if not realization, that this would be the last time I saw Craig.

One attempt to see if he could breathe on his own had already failed. Staff hoped to try, or at least Lynn and Claude were certainly going to encourage another try, in the next few days. We were all in agreement, as much as feelings can be, to accept the results.

Ultimately the attempt failed and, while Lynn and Claude were out of the room having lunch, Craig died on May 9, 2007 – six days shy of his fifty-second birthday which that year also happened to fall on Mother’s Day.

That unimaginable Sunday was spent travelling to Montreal with Mom for the funeral service the following day. Then on Tuesday it was back in to two cars for the drive to Perth where a sunset burial was held at Scotch Line Cemetery next to the plot owned by Mom and Dad.

Later that spring, Claude bought a headstone with Craig’s birth and death dates as well as Claude’s birth date. The inscription described Claude as Craig’s “compagnon de vie”, the first openly gay – and surely among the first bilingual – grave-markers in the town’s three or four cemeteries.

Chaplin Craig et Claude