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.

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

Tapestry, coping and shame

Last Sunday afternoon, Thanksgiving weekend, I was out for a walk in Perth taking some of the photographs I collected over my five days there.  I was also slipping away from the family in order to listen to a radio program which included brief comments I had made by phone as invited by the producers.

CBC Radio’s Tapestry was airing the second part of a series called Coping and at about 15:49 into the program I am heard introducing myself, then speaking of how my bipolar II diagnosis was an “A ha!” moment for me in the context of living as a survivor of childhood trauma, addiction recovery, and living with HIV/AIDS since 1989.

I also said that the bipolar II diagnosis has allowed me “to have a little more compassion for myself” and, in turn, with others with mental health issues with whom I can more easily and comfortably empathize and suppress my self-criticism.

“I live on,” I said, “and live on in curiosity”.

The reason I felt I had to head off to my favourite café, rather than invite my family to listen to the program with me, is that they are not all up-to-speed on my bipolar II diagnosis nor, in some cases, the sexual abuse.  In the case of my mother, I have withheld these because I have judged that she has had more than enough to deal with.  Whether it is worth the secrecy may be another matter entirely.

Fast forward to my weekly group therapy yesterday, which I had missed due to travel last week and being ill the week before.  It followed on the heels of my check-in with my psychiatrist in the same hospital during which I confessed that, due to financial problems over the past little while, I had been unable to pay my quarterly prescription co-pay of about $100 and had, therefore tapered myself off my medications – re-starting at the end of September after more than a month when my finances were back in limited order.

He urged me to be in touch with him should I ever run into trouble again (I had even bluffed my way through an appointment with him during the crisis) and to keep in mind that relapses could be very serious.

Off to group therapy I went where I broke down crying as I reviewed the past couple of months and spoke of the shame I felt in being short of money.  It was of my own doing, I judge, because I had sought sexual release time and time again with the click of my TV remote at $9.99 plus tax per viewing.  (More shame.)  The financing – no worries until the bill arrives – was as seductive as any of the pay-per-view characters.  There were equal amounts of shame in having dug myself into a financial hole, putting my health at serious risk, and the mental condition which I dared not speak of with my loved ones – despite all of their support for me in every other area of my life which many other families might not be able to tolerate.

I did manage to tell my family, as we packed down a splendid turkey dinner, that I had lost ten pounds in the past little while.  What went left unsaid was how much less I had been eating and why.

What could I have done differently?

Certainly I could have flagged the financial problem with not only my psychiatrist but also my doctor and pharmacist.  Heaven and earth might have been moved to make sure I had my meds.  Instead I chose, in shame, to deal with it myself – the same faulty self-reliance that got me through the rough years as a kid.

I could have told friends what was going on.  It would not have been too tough to borrow a hundred bucks for my meds.

No doubt I could spend time, honestly, openly and,  more constructively, out of isolation with friends.

Whispering “Help!” from the windmills (or silos) of my mind

Those of you who have followed me, be it through my writing, my tweets, or home from the convenience store will have picked up on the fact that I have a fair amount on my plate.

I’m a very slow eater.

I recently joined a support group for long-term survivors of HIV/AIDS – in my case it’s been no less than 23 years. Even more recently I quit the group when I convinced myself that there was something to the quizzical looks I was getting from existing supportive friends, surprised that I might have anything I couldn’t discuss with them.

Particularly those who were also HIV-positive; also long-term survivors.

It felt good to formally end my relationship, short though it was, with the “support group” and to tell them why.

I don’t want to compartmentalize my life any more than I’m ever convinced I have to – if at all.

I want to safely, sanely integrate the many facets of my life – which too often feel like they’re in individual silos – into something that I can present to anyone I choose.

To recap what loyal readers already know:

I am a survivor of childhood trauma at the hands of an elementary school head teacher/principal.

I was bullied – by him and by peers both in early grades and in high school. I survived.

In my adolescence I was sexually abused by strangers, i.e. more than once, in a part of my home-town that I would only, as an adult, recognize as a “cruising area” for men seeking casual sex with other men (or, since I was there, with boys).

I buried that sexual trauma until I described the first incident in the third person at a HIV/AIDS-related workshop in 1990, some eighteen years after it started.

Then I buried it again, for the most part, but it kept reappearing particularly in the context of dealing with alcohol and other addiction.

I sought support for the addiction but only occasionally mentioned the trauma(s), believing that help was not available as one-stop shopping. (It was also too much to deal with in the context of my HIV progression to AIDS-related illness, the support and care of friends who have long since succumbed, and my inability to stay sober for more than five to seven years at a time maximum.)

When my brother Craig died tragically in 2007, and I was drinking at the time even if not in the presence – not even the same town – of my grieving family I came to a critical point of despair. Thoughts of suicide both tormented and comforted me.

Earlier that spring I had considered running for political office. Me! On long-term disability insurance! I had also wasted the bulk of an insurance settlement from a 2003 accident as if I wasn’t going to live long enough to enjoy it.

I was assessed and diagnosed with/as (I’m not sure which) bipolar II, one step on the spectrum from the more notorious bipolar disorder or manic-depressive illness, as it used to be called.

Believe it or not it was a relief to get a better understanding of what had begun, to me, simply as an absence of depression – for which I had been treated since around the time I tested HIV-positive – and to make sense of what had clearly become episodes of hypomania and depression.

The cautionary experiences of my peers, plus the general stigma still associated with mental illness, have made it difficult to articulate all that I have been discovering about myself as I review the years but one thing is for sure: I can no longer just be a gay, HIV-positive and (to some a recovering addict) friend or relative to some while hiding the largely successful, but ongoing, treatment of my psychiatric illness. The silos drive me crazy – and anyone with a passing acquaintance of farming will know that silos can spontaneously combust!

I do not know to whom any, or all, of this is news. Please let me know. Maybe this is just a rant I occasionally need to let rip. My emotions are not helped by a temporary physical malady today but, then again, I know that’s what it takes to move me sometimes!

The bottom line is that I want to be able to describe the whole picture, even if I mix oil with pastels, chalk with water. The silos aren’t all filled at the same time, usually, but that’s just the point. I don’t want silos any more. Could you at least help me with a better analogy?  I would be so grateful.

Nine years older nine years later

It’s been so long I had to look up what SARS stood for (Severe Acute Respiratory Syndrome).

That was part of the underlying score as I spent five weeks in two hospitals starting nine years ago early this morning.

Why was I laid up?

Well an item from Montréal in this morning’s news brought it all back, except that I wasn’t in an argument when I was hit.

Some of the details I remember quite clearly, as I recalled in my story, but the twenty-four-to-forty-eight hours following my mishap have been wiped from my memory – calling my friend Karen, Karen calling my Mom, Mom calling me. I had perked up a little by the time my sisters and Craig called. My down-and-out time was spent in surgery and recovering from it – repairing my right femur and radius by “internal fixation” one at a time, mind you, but under the same anesthetic (these x-rays are roughly what mine looked like when all was done.)

From the moment the first fire-truck arrived until my last day at the rehab hospital on June 6 SARS, and the necessary but de-humanizing preventive measures against it, was a constant fact of life in Toronto. The TV movie made about it wasn’t far off the mark at all.

So nine years later, there’s been a lot of water under the bridge, but I still see the places on my leg and arm where the incisions were made and on days when my body aches those two spots tend to lead off.

Once upon a time living to see 2003 seemed an unrealistic dream, and that spring was quite a nightmare, but I remember lying on my hospital bed “bargaining” to hopefully walk again, use a cane for the rest of my life even, and, while I thought I had to do so for some time, that is no longer the case.

This mishap was the catalyst for a lot of therapy – and not just of the physical variety.  I became familiar with the idea that significant trauma can re-awaken (or rouse for the first time) past trauma.  I’ve done a lot of work in nine years, if I do say so myself.

So there’s my shot of gratitude for the day!

Medical update: I could do better if ‘good enough’ wasn’t still good enough

It’s been quite some time since I had the run of tests for HIV and diabetes, in part because of my fear of the results, so today’s news was quite satisfactory with clear room for improvement.

My viral load, a test which measures the activity of HIV in my blood, is below levels of present-day detectability. That’s the goal of this test of primary importance.

The CD-4/T-4 count, a measure of the immune response to infections, is 350. It has been higher, and also much lower (10 back in the early 90s), so I’m hoping that I can see it go up again. (I think my personal best is in the 600s.)

On the diabetes front, my A1c hemoglobin test – ideally at 7% (0.070) came back at 0.077. I know there’s room for improvement and, frankly, was surprised I did that well.

All in all, while I had some apprehensions about getting the results today, I was pleasantly surprised. Oh and my “head meds” are at acceptable levels.

Bursa – and not the city in Turkey!

The ever-increasing pain I have experienced recently now has a name – bursitis.

I’ve narrowed down the cause to being on my feet or, alternatively, sitting on concrete, the weekend of Jack Layton’s funeral.

Yesterday I began physical therapy treatments and learned that we all have bursae, at which I inquired, “As in bursitis?”, not knowing what that is, having only ever associated it with people of a certain age.

I have been given a few simple exercises to do between visits and am continuing to use my cane and choosing my chairs carefully. Nice to know a little more about anatomy, even if it takes pain to educate me.

Aches and pains of fractures of old

This post serves as a reminder of what has ailed me in recent days.

On the day of Jack Layton’s funeral I spent an inordinate amount of time on my feet, standing in one place, taking pictures, standing in line, etc. A few days later I noticed some pain in my femur, which I could only visualize as the metal device in my femur driving into the lower half of the bone. The pain seemed to pass a few days later but returned last weekend.

My family physician is away but his receptionist recommended that I try the walk-in clinic on the main floor of their office building. “Walk-in”, I have discovered, is not synonymous with fast availability as people without family doctors were given priority having booked appointments with “walk-in” doctors. I took it in relative good humour, only once getting up to ask if I would be seen by closing time – which I was and with room to spare to have x-rays done upstairs. Now I wait to see my family doctor on the 16th’

Referring to a 2003 report from my orthopaedic surgeon, which I took with me, the “walk-in, sit down for an undetermined period” doctor reminded me of the technical terms that had been lost in my memory. “Displaced intertrochanteric fracture of the right femur and a displaced fracture dislocation of the right distal radius and wrist…The patient was taken to the operating room the following day where open reduction internal fication of the proximal right femur fracture was performed using a DHS plate and screw system. Under the same anaesthetic an open reduction internal fixation of the right distal radius was performed utilizing a plate and several screws.”

Although the prognosis back then pointed to me having troubles with my wrist, and a good recovery of the femur, the wrist and radius are fine.

In the meantime, I’m back using my cane which I had stopped doing several years ago – even around the apartment where short walks seem to be more difficult as I need a few steps to get my balance and confidence.

I’m not out of commission, but am taking things easier than I’m accustomed to (which was easy enough!). No long walks are being contemplated for now.

Txt, telephone or…blog…let’s talk about mental illness!

This is Bell Let’s Talk Day.

Multiple Olympic medallist Clara Hughes, lead spokesperson for the campaign, was on CTV News in Toronto today. From among the calls she fielded came this articulate gem, “To kill the pain too often means to kill oneself.”

However, and this was Clara’s message, help and hope are available to those who reach out.

Citing Bell’s initiative today, St. Paul’s (Toronto) MP Dr. Carolyn Bennett, in a Member’s Statement in the House of Commons, called on the federal government to move forward with an anti-stigma campaign. I won’t hold my breath.

To kill the pain too often means to kill oneself.

Something else important to point out is that mental illness is on a spectrum. Major depression, bipolar or schizophrenia are examples of the most serious forms of mental illness but there are plenty of gray areas, too – usually the first signs of something more serious.

My first meeting with a mental health professional came around the time that I was diagnosed HIV-positive, nearly twenty-two years ago.  I was put on the lowest dose of a common anti-depressant and it was only when I took myself off it a few years later (unsupervised, such as I did it, is never a good idea) that I realized how much it had been helping.

Then, years later, what I identified as a distinct lack of depression led me down a path of behaviour quite out of character.  Only at the bottom of the deep hole of my own digging did I again seek help at which time I was diagnosed, over time, with bipolar-II – a variant of the more extreme bipolar or manic-depressive.

Listening to a description of the condition and its symptoms I recognized myself and felt much relief. It explained much about recent feelings and behaviour but also put historic episodes into better perspective.

A change in medication once or twice, trying to minimize effects on my lipids, has resulted in a recent period of stability.

I cannot take my moods for granted, certainly not the good ones.  Yet I feel that, so long as I take my medications (“head meds” or those for HIV/AIDS), I have hope.

Social contact cannot be over-emphasized either.

The happy, and the dreadfully sad, of April 24

Does anyone in Toronto know where I could get French-language greeting cards?

Well, one more time, I had to mail an English birthday card to Craig’s partner, Claude.  Now he’s always up for anything that will improve his second-language skills but, as a gesture, I just think French-language cards for him would be nice.

April 24 is now so inextricably linked to both Claude and Craig.  My brother was carrying bags of stuff home to celebrate three years ago today when, right in front of their beautiful old walk-up in Montréal’s Le Plateau neighbourhood, he stumbled and fell to the pavement.  A shopkeeper across the street saw it happen and called 9-1-1.  Craig hit his head so hard, and was unresponsive, that it was to the Montréal Neurological Institute that paramedics took him (lower hat-pin), just a short walk from the United Theological College to which he made a bequest of a memorial gift.  Canadians might remember the Montréal Neuro for one of its famous founders Dr. Walter “I smell toast” Penfield.  Craig was in the best possible hands.  Unfortunately he never regained consciousness nor, for that matter, did he breathe on his own.  That’s not to say there weren’t many days and nights of hoping.

Map picture

In the whirlwind of that late afternoon Claude had called my sister in New Brunswick, second only to Craig in the family as far as proficiency in French. She immediately flew to Montréal, alerting my other sister what was going on who, in turn, called me that evening. We decided to take on the role of being with Mom in Perth while news from Montréal was still fluid.

Mom took our collective advice to stay at home. She didn’t fight us on that, having just recently spent Easter weekend with Craig and Claude. A few days later, with news not getting any better, my sister and I went to Montréal to see the lay of the land for ourselves. I must say one of the lasting impressions I have of that visit was how the respirator seemed to inflate his slim belly to the point of nearly breaking. I’m not sure any of his “thumbs up” responses were anything more than something involuntary pulled from his memory. The next day there was virtually no response and, as my sister and I returned to Mom, I was pretty sure – or in dread – that I had seen Craig for the last time.

But that was somewhere between April 24 and May 9. April 24 is still for Claude, whom we all love as a brother and son. I can’t imagine being in his head and heart on this date any more, but I know that a friend of he and Craig is making him dinner tonight.

Bonne fête, cher Claude!

A few pictures from Montréal and Perth in April and May of 2007:

   The iconic view from Mont-Royal

 Speaking of icons: Schwartz’s Deli on “The Main” in Montréal

  Beautiful blossoms at Perth’s old fire hall tower

  Coutts Coffee at Code’s Mill in Perth where I tried to blog my way throughout this period

The American health-care debate from an HIV patient’s perspective

I do not understand all the ins and outs of the American health-care system, neither that which existed before today’s vote in the House of Representatives nor the one after.

Here’s what I do know.

Canada has a single-payer health system for hospitalizations, doctor’s visits and related expenses such as most diagnostic tests. Coverage of pharmaceuticals remains a gap with only private insurers, usually with co-pays, covering employee benefits and only provincial governments paying for drugs for those on social assistance or those in need of “catastrophic” coverage. (In most jurisdictions, the thousands of dollars for HIV/AIDS and related drugs each month fits the definition
of “catastrophic”.) These provincial plans only came about as the result of hard work by coalitions, led by AIDS activists, in the 1990s and they vary from province to province which is why a national pharmacare plans remains a dream.

Such a plan only makes sense with hospitals, where patient drug costs are absorbed, treating only the sickest of people. Most of us are able to stay out of hospitals thanks to medications.

This month my eleven prescription medications cost $2589.72, nearly all of which the government pays (to be clear). The most expensive, because they are new and freshly-patented, are the four HIV treatments. However, with buyers as large as the governments of Canadian provinces, bulk prices are negotiated to everyone’s benefit.

My single-payer health-care allows me to visit any hospital emergency room in Canada, as well as my taxpayer-financed family doctor, my HIV specialist, my psychiatrist and my dermatologist with nothing more than the swipe of a provincial government health card.

Are there ‘uninsured’? Sure but people such as the homeless are treated in emergency departments and in street clinics as necessary.

I’m curious to know how I might have fared, these past twenty-one years of living with HIV, had I lived in the United States. I am very optimistic that the system there will change – even if not all at once – in the next few years.

The roof over my head – a touchstone of my gratitude

A brief look at Kengi‘s blog reminded me to take stock of how grateful I am to be living where I do, as I do, with rent geared-to-income.

This spring marks the beginning of my nineteenth year in this apartment – I’ve had to do a couple rounds of finger counting just to come to believe that – and, although I sometimes think I need to move out long enough to give it a thorough makeover, I am ever so grateful for this roof over my head (a roof refurbished recently for another generation).  My balcony overlooks the driveway at the right edge of the photo.

Map picture
Map picture

I like to say, perhaps it’s unkind to do so, that I live at the southern end of Bleecker Street as the northern end is a huge housing complex with notorious difficulties not dissimilar from 20,000-tenant projects anywhere. I moved in here in the spring of 1992, just a few weeks before  Terry died (that’s the way my morbid calendar sometimes operates).

Jim and Terry had separate apartments when I moved in, Jim’s across that glassed-in catwalk connecting our two buildings and Terry’s just one floor almost directly above what would become mine.

Since leaving work in 1990 I had moved from a time-share with mice on Wellesley Street to a ‘Metro Housing’ complex out in the east end.  I had been feeling increasingly unsafe there, however, deflecting a few homophobic slings and arrows and so Jim introduced me to the administrator here.  I was told it shouldn’t be too long before I had a place and indeed it wasn’t.  These were the days, after all, when AIDS was killing swaths of men downtown.  This immaculate co-op, unlike the poorly-maintained, underfunded, municipally-administered types of mixed-income housing around, had a special outreach in its subsidized slice of the pie (60/40 market rent-to-subsidy) to people living with HIV/AIDS, single-parent families resettling after domestic abuse, and those with various mental health issues.  So two out of three lights lit up for me!

It was not unreasonable of me to believe, as I helped carry my heavy sofa from the elevator, that I’d probably only move out of here in a body bag.  That may still hold true, I don’t know, but it sure is great that I DON’T KNOW like I assumed then.  I’m still here, as is the sofa!

Over the years, since the advent of the AIDS ‘cocktail’ in 1995-96, people here haven’t been dying as often, nor as quickly, at least not of AIDS-related causes.  While my health is a juggle of AIDS, type-2 diabetes and bipolar II my prognosis is most definitely better than it was when Jim painted this place dusty rose in 1992.  (It’s been changed, trust me, since then!)

I am a pleasant walk from the gay village to the west and to historic Cabbagetown, whose roofs I overlook, in the east.

Government cuts since I moved here have decreased the housing stock for people on fixed incomes, I know, so I never take this place for granted as I know I’d be under-housed, to put it mildly, were I forced to pay market rent.

(On move-in day in 1992 the Premier of the province was New Democrat Bob Rae.  Co-Op housing was still expanding.  Ours survived the Draconian reign of ‘Common Sense Revolutionary’ Mike Harris from 1995 until 2002 and massive federal cuts from then-Finance Minister Paul Martin.  The aforementioned provincial Premier Bob Rae is federal Member of Parliament for my area, but a Liberal Party representative now, and Liberal Premier Dalton McGuinty has - for the most part – kept a selection of Housing Ministers at the kids’ cabinet table. We’re still waiting for a vision.)

I’ve still not experienced palm trees in their natural environment (bucket list) but on any gratitude list my housing is right up there!

Writing about being written about

I was quick to post this link to Facebook yesterday from a website in Princeton which featured an interview-by-email with me on the subject of blogging about HIV/AIDS.

Shruti Kalra, the writer of the piece, first contacted me early in the year, wondering a few things about me and this blog, and I wasn’t long agreeing to an interview which, with my limited web technology, meant answering a list of questions and emailing them back.

Surprise, surprise – I wrote more than Shruti needed but, and I hope she doesn’t mind me doing this, here are the questions and the entire answers. You might even recognize yourselves in places. (Isn’t this just like the bonus material on a DVD? – again the technologically-challenged version):

1. What is your age, occupation, hometown or current residence?

I just turned 50 last October (a milestone for anyone, let alone me). I have been on long-term disability since 1990 when I found that I could not work with the stress of HIV. I left what was my job in an international reservations centre for a Canadian hotel chain. Prior to that I worked for eight years as a radio news reporter in St. Catharines, Ontario, having completed an applied arts college program in 1980 in journalism for radio, television and film.

I grew up in Salaberry-de-Valleyfield, Québec, a suburb of Montréal and, after working in St. Catharines, I relocated to Toronto which has been home now for 22 years.

2. When were you diagnosed as HIV-positive?

The official diagnosis was in March of 1990 but when blood tests from the previous May were checked specifically for HIV antibodies they, too, were positive so I use May, 1989 as the date.

3. How did you react to the diagnosis? How did your family members and friends react to the diagnosis?

I think I was kind of numb at first – suspicious that I might be positive but hardly prepared to be given the news. I was, and still am, part of some large support groups so the night I got the news I went to a meeting, told them about my day, cried as I did so, and was warmly hugged and supported by a room with many other HIV-positive people in it – so many of whom I went on to witness in their deaths. So, while I had an immediate nucleus of support, it was very much among the walking wounded – either fellow HIV travelers or friends who were watching a generation within the gay community seemingly be decimated.

Members of my family were, and remain, very supportive. As one of my blog pages notes I had a gay brother who also had HIV. The fall which led to his death in 2007 was indirectly related to HIV inasmuch as he had polymyositis that was severely affecting his mobility – the disease thought to have been brought on, in part, due to steroid use to stave off loss of body mass caused by long-term use of HIV medications.

The year I was diagnosed, when Craig and I were still pretty healthy, my parents and I went on a picnic and I opened the conversation with, “When Craig told you he was HIV-positive to the best of our knowledge I was not.”

Mom knew where this was going and groaned, “Oh don’t tell me…”

But supportive they were.

4. How familiar were you and your family members with HIV/AIDS before your diagnosis?

Well, thanks to our experience with Craig, our familiarity was probably greater than the average family. One of the motivating factors in my being tested was news at the time showing that AZT was showing great promise as an early treatment. I thought I’d better be on it as soon as possible should I turn out to be positive. Fortunately/unfortunately my very first CD-4 count was just under 400 which, at the time, was the threshold to begin treatment.

5. A lot of patients feel overwhelmed by the frequent doctor visits and some feel overwhelmed by all the information they have to get familiar with. What was the most disorienting thing for you?

I feel as if I have almost had to become a student of medicine although over the years I have found it less necessary to understand everything, particularly the inner workings of the virus, and acquire information on a need-to-know basis. So far, I have always managed to stay at least one treatment option ahead of the game. In other words, should my current meds cease to work, I have another major “cocktail” combination as a treatment option.

6. How do you keep up with all the new information on HIV treatment?

I don’t lap it all up as voraciously as I did when I was first living with the inevitable shock of diagnosis but there have been times, such as when the so-called “cocktail” approach to treatment became known, that I read a lot. I was fortunate to be on one of the first such cocktails when its great promise was touted at the International AIDS Conference in Vancouver in 1996, which I attended. I am also under the care of one of Canada’s leading AIDS practitioners so I have access to reliable information from him.

There are a few web-sites, in addition to AIDS Beacon of course, which I follow on occasion. Not all are specifically research-oriented:

Canadian AIDS Treatment Information Exchange (CATIE)
Global Fund to Fight AIDS, TB and Malaria
Global Network of People Living With HIV/AIDS
GNP+ North America
Living Mindfully with HIV
Positive Side magazine
POZ.com blogs
Stephen Lewis Foundation

7. Describe how your life has changed or how you have changed after the diagnosis.

Well, of course, one of the first dramatic changes was leaving work but, in those early years especially, I was able to offer myself as a volunteer in a couple of AIDS organizations.

My decision to leave work was vindicated in 1993-94 when, as my doctor still discusses with people on rounds, I “nearly died” as the result of a long-term struggle with cryptosporidiosis during which I felt like I was literally shitting myself to death.

Almost immediately after my diagnosis I began treatment for major depression with a combination of medication and ‘talk therapy’.

Remember, too, that in those early years my circles of friends were involved with people dying. There were waves of deaths among my peers so I was involved with home-care teams and other community efforts to cope with what was unfolding, all the while believing I could be dead at any time.

As medications clearly started to work in extending people’s lives many of us who thought we would be dead dealt with – and I’m not the first to call it such – the “mind-fuck” of beginning to see that we would survive. It is also fittingly called “survivor guilt” but I maintain that this is preceded by, and often works concurrently with, the m/f.

8. What are some of the complications you have faced after being diagnosed with HIV/AIDS? In your previous email, you mentioned being diagnosed with a mental illness and facing physical limitations due to an accident, can you go into more detail about that?

The major depression was treated for several years with low-dose Prozac and therapy – mostly Gestalt. However, in 2003 I was struck by a car and suffered a broken femur and wrist and was hospitalized for five weeks at the height of Toronto’s SARS crisis which meant a great deal of social isolation.

I soon began to show signs of post-traumatic stress and began treatment and psychiatric care for that. It was particularly crucial that any drug therapy help me sleep which the PTSD had made impossible.

Within a couple of years what I was noticing as an absence of depression had actually become hypomanic behaviour and a diagnosis of bipolar II seemed like a welcome relief. To me, it explained a lot of my behaviour from many years back.

I should also insert the fact that in about 2004 I was diagnosed with type-2 diabetes, the gravity of which I failed to appreciate. (At 6’2” tall and 145 lbs. I could not conceive of the notion that I had what I considered to be a disease caused by over-eating, even though there was evidence that it could also be the result of long-term use of anti-retrovirals, particularly protease inhibitors.)

The bipolar II has been under control now for the better part of a year but it requires the discipline of taking night-time medications which I sometimes prolong if I’m feeling “up”.

9. Has this blog help you meet or make any connection with other individuals?

Reader/commenters aside I can’t say that it has facilitated any important meetings with new people, that I can think of, but the variety of topics I blog about, other than HIV/AIDS, has probably generated more activity. Some of my political blogging, for example, has led me to meeting with blogging political candidates. When I considered running for political office myself (one of the symptoms that led to my bipolar II diagnosis, by the way) my musings brought me some of the greatest traffic my blog had ever received. That’s understandable, given the near-manic pace with which political operatives scour the internet for news of interest to them.

Sometimes I feel defensive that I blog about so much more than HIV/AIDS but, as I said, the traffic bears out interest in other things and my life is about more than AIDS. Besides everything else I blog about is part of the passion I bring to life. When I blog about a news item which has caught my attention that’s the journalism background speaking.

10. Would you recommend blogging to other patients?

Absolutely! As someone who never kept a daily written journal blogging has helped me do that – even if not daily. I have a written record of many parts of my journey.

11. Since your diagnosis, what has been your inspiration?

I’m not sure I know how to answer that, other than to say that I believe that I am no more entitled to the best possible medical care and access to medicines than anyone else in the world. Treatment clearly is working better now in some very poor countries but more must be done to give access to all. I have been inspired by the courage of those friends who were sick and died before better treatments came along and I remain inspired by long-term survivors who continue to live into uncharted waters.

12. Do you have any advice for patients newly diagnosed as HIV-positive?

I would say surround yourself with people you love whom you can trust to share the news of your HIV status. When times are difficult they will offer you support that you would not necessarily seek from a professional. On the other hand, take advantage of any professional help you can. Many great people are trained to walk us through the early days of HIV diagnosis. Because the survivability of HIV/AIDS has improved so much over the years remember to take your meds faithfully and to live each day to the fullest extent possible. Living with this disease can feel lonely sometimes but remember there is not a large + sign on our foreheads. We can participate in life as fully as we wish and are able.