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.

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.

The circular isolation of self – my 1010th post

I have a small collection of turtle ornaments on a book-case. I relate to them, seeing myself personifying some of their characteristics – slow, steady and self-deprecating to a fault, able to withdraw, when threatened, to my own delusional safety.

Someone once told me that five bucks in your pocket often makes the difference between a good and a bad day. I would just add that it’s important to discern what’s best to do with it.

This is a good day. I refilled prescriptions, overdue by a month, the self-deprivation of which I know from experience may have already done me harm. Going without them, both mood and HIV-related, has been a strain, one which I have not shared. I find fault in myself without even trying.

My auto-correct will rightly call this “awkward phrasing”:

Had I not needed to pay off a pay-per-view bill (self-centered shame involved) that was through the roof, at least in part because of being without my bipolar II meds (self-centered stigma even mentioning that), I would have felt better. It is probably for this same reason, and a decrease in food intake (fitting the stereotype of those who make choices between medicine, food and, in my case, $9.99 pay-per-view movies), that I lost about twelve pounds since I was last weighed two months ago – still 6′ 3″” (1.9m) tall, of course, but now just 130 lbs. (58 kg) for a BMI of 16.2 (underweight being anything below 18.5). How my blood-work has been affected has yet to be revealed.

The first thing I did this morning, pay-day, was go out for a Subway breakfast sandwich (far too salty!) before picking up my prescriptions. (Nothing for breakfast was available at home.)

It’s a chicken-or-egg riddle – being without money which caused me to withdraw treatment of my mental and physical health or a lack of untreated mental health which caused me to be care-free about money. ‘Twas ever thus, except I have had enough repeat experience to know that one begets the other.

I have begun to track my every expense as a first step in budgeting.

Writing this has been a detached, left-brain exercise. Maybe if I read it enough I’ll begin to feel it.

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.

There are at least a few, if not many, important people with whom I need to have my own conversation about…


It’s certainly not too early to think about Mental Illness Awareness Week

When I read the Ottawa Citizen article (linked above) I immediately thought, “Mom will have read that yesterday,” and what an opening it would give me to discuss my own mental health history with her.

Not long after sobering up five+ years ago, I was diagnosed with bipolar II and, although it might seem strange, the news came as a relief to me. It helped to explain behaviour, over and above (and below) drunkenness and depression, which had dogged me most of my adult life. The eventual absence – thanks to treatment – of depression, which became hypomania, went undiagnosed for so long because I quite enjoyed said absence of depression, despite the danger, stupidity and recklessness which accompanied it.

Of course, as my 1,002 posts here can illustrate – at least in part – there’s been more going on in my life than depression so, absent or otherwise, there have been many other factors contributing to my state of being and my sense of self.

I cannot deny, and quite enjoy reporting, that seeking help – even if it took sinking to “rock bottom” to do so – has me feeling mentally stronger than I have in a long time, the occasional extraneous screw-ups notwithstanding.

For that I am truly thankful.

AccolAIDS much appreciated!

Healthline editors recently published the final list of their favorite HIV & STD blogs and I’m pleased to let you know that this blog made the list, which can be found here (in no particular order).

I am very appreciative of this vote of confidence!

Kenn Chaplin is no defeatist; he’s brazen, energetic, gut-wrenchingly honest, and inspiring. This active blogger, political activist, traveler, and long-time AIDS veteran knows a thing or two about living with AIDS.

He fills his blog with jokes, personal stories, tributes to friends who have lost the fight, and lovely photos of anything he wants. Along the way, he educates his readers about life with AIDS. Kenn knows (and shows) it’s not always easy, but hopefully he also knows how important his strong, steady voice about life with AIDS is for the rest of the HIV/AIDS community. Go, Kenn!

Pig Penn – warped perspectives in the Penn State scandal

Very puzzling, but markedly less infuriating than the sexual abuse and cover-up scandal shrouding Penn State University, is the thoughtless, pigskin-headed response last night by student mobs to the sackings of the university president and, much more of an issue, the football coach.

Now that’s an improvement!

Watching a news conference held by the university’s board of trustees vice-chair, John Surma Jr., there was an audible gasp of indignation from assembled media and students alike as the forced resignations were announced. In the questions that followed it was easy to distinguish between journalists who had a bit of perspective on the tragedy of the abuse scandal and its victims and those muscle-heads who were apparently thinking only of the fabled football program, its storied coach and the team’s next game on Saturday.

How and when was the coach advised of the board decision? Was it in person or over the phone?

Objection: relevance?

I wish I had a transcript of the whole press conference.

From the board’s perspective, while voicing concern for the victims and their families, it clearly had a larger agenda: salvaging or re-building Penn State’s reputation among prospective students, staff, alumni and funders.

And while there were a few compassionate questions at the presser concerning the board’s relationship to the victims I couldn’t help feeling that most of the concern among those assembled was for the octogenarian coach, Joe Paterno, who seems to be among those who either engaged in an exercise of plausible deniability or unconscionable cover-up which led to the victimization of even more boys.

My skin was crawling (and burning and peeling a la this week’s episode of  “Michael Tuesdays and Thursdays” ).

This scandal combines unforgettable parts of my past – the bullying by a teacher in elementary school, further bullying by high school students and sexual abuse by men unknown to me in my adolescence.

While I am able to think and feel my way through these triggers, the now fifty-two-year-old man doing so feels tearful empathy for these Pennsylvania victims.

UPDATE: It was a relief to talk about all of this with a group of peers this afternoon. Triggers like this do not surprise me. It is helpful to hear my feelings reflected back to me.

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.

Updated (with link to video): John Marks reminds me of my struggles with faith – and that we don’t have to be right

Here’s a recent video of author John Marks being interviewed on The Bully Pulpit. It’s a great way (if you’ll take the 45 minutes or so to watch) to get a sense of where he’s coming from in his book and why I was so fascinated by it.

The Bully! Pulpit Show: John Marks from BullyPulpit.com on Vimeo.

Original post from April 2008:

A little while ago I bought Reasons to Believe: One Man’s Journey Among the Evangelicals and the Faith He Left Behindby John Marks, which I’d heard about while clicking around TV, the subject matter of which resonated strongly with me. (Here’s a fair review.)

Marks, a former evangelical Christian, was researching the phenomenal success of the “Left Behind” series of apocalyptic novels for an item on the CBS program 60 Minutes. An elderly couple he was interviewing asked if he, himself, would be ‘left behind’ when, as they believe, the Rapture occurs. If the question was a little disarming in its frankness, his answer is the basis of this book which, indeed, is a journey. It will surprise many readers – Christians, of all descriptions, and non-believers alike.

As for why I was drawn to the book, there was a time – in college – when I took what my liberal Christian family correctly saw as a rather abrupt leap to an evangelical church.

The explanation begs more than a little context.

It was my first year in college, some six hundred kilometers from home, and I was spending a winter weekend with a couple who, unbeknownst to me, had been “born again”. These were people I knew to havebeen raised in churches similar to mine, albeit in congregations more conservative. The fact remains that increasing the numbers of the “born again” was not a major thrust of those churches’ work – which was to serve as part of their pitch to me. Was I, and there were implied questions about the rest of my family, truly Christian? Had I, as was their version of the minimum requirements, accepted Jesus as my personal Saviour? They brought out some evangelical Christian music for me to listen to in my quiet times there, and dubbed cassette copies for me to take home.

Before I left, to hitch-hike back to college, they gave me a couple of pamphlets from Campus Crusade for Christ. (This was long before the internet and its mass evangelizing potential.) One of those brochures featured stick-figure drawings of “man”, sin, (Hell maybe, too?), Jesus and the throne of God. If I could not be sure where I’d go, were I to die that night, there were simple instructions and a ‘sinner’s prayer’ to change that. I followed those instructions, and prayed that prayer beside my bed, when I got back to the four-bedroom duplex I shared with three classmates.

That evening I visited the pastor of an evangelical church. I had attended one or two of their services, at the behest of the landlady from whom I had rented a room briefly, at the beginning of the academic year. Fresh from the evening service the pastor’s door swung open and he greeted me warmly, then ushered me into the living room where the church music director and his wife were visiting. I told them what had happened and, of course, there was great joy in the room. The pastor then told me of the upcoming baptismal service on Easter Sunday – in just a week or two.

Of course I’d be baptized, my childhood baptism seen as null and void by evangelicals, and it would be by full immersion – in a narrow, step-down pool behind the choir loft only uncovered for such occasions.

So, while it was no surprise to my parents that I would not be home for Easter, having just returned from Reading Week with them, my Easter plans were quite a shock to say the least. I sensed their disappointment over the phone, no question that this was a departure from my church upbringing, and so they were quickly on my prayer list. My baptism, along with a line of others dressed in the choir’s old gowns, went off without a hitch.

There remained, however, at least one obvious inner conflict. I was struggling with the eventually-undeniable fact that I was gay. There were some me-thinks-he-doth-protest-too-much incidents such as my having a letter published, in the national news magazine of my family’s church, critical of the church’s move toward ordaining gay clergy (which eventually passed). The double life was even more distressing, however, as I discovered gay bars, and other meeting places that I would frequent, only to seek solace at church on Sundays.

I even sang a couple of solos.

My association with the evangelical congregation and, to a lesser extent, its theology (more about that later) ended when the pastor wrote a letter to a local newspaper supporting police actions against gay men and bath houses in a mass arrest one hundred kilometers away. I angrily left the church without explanation as I easily identified with those arrested and the circumstances in which they had been found.

I flung myself into the civil disobedience and mass demonstrations which followed and, in so doing, found a community which showed signs that it would help me begin to accept my homosexuality. I also learned of a church, with special outreach to the LGBT community, and became convinced – about as fast as I was “born again” a few years earlier – that I could be both Christian and gay.

Emboldened, and trying to be as self-affirming as possible, I wrote a letter to my parents telling them that I was gay and that I now believed I could still be a Christian. Only my coming out was news to them. They told me that my older brother, at the time still studying to become a church minister, was also gay. It was as if our individual struggles had taken place in emotional silos!

That was in 1981.

My church life continued, commuting to the city on weekends where I indulged my sexual desires and then worshipped at Metropolitan Community Church of Toronto (MCCT). It still had a double-life feel to it as I tried to keep separate my enthusiasm for the church and my enthusiasm for sowing wild oats. Yet the misgivings and guilt were nothing like I used to feel. If I had convinced myself that my sexual orientation was not a flaw, it still remains to be seen whether I can completely shake the feelings of guilt over my sexual behaviours. Having been told, even convinced, by Jerry Falwell and the like, that homosexuality was a sin and that AIDS was God’s retribution for it I had practically set myself up to be diagnosed with it. That self-fulfilling prophecy came in the form of a diagnosis of HIV infection in 1990 and, when blood samples from a year earlier were re-examined, it’s clear that my sero-conversion had begun in 1989.

“If anybody deserves AIDS, my thinking went, I do!”

That long-held belief would take many more words to unpack. Suffice to say that I do not believe illness or misfortune is deserved, nor can I believe in a version of God that would willfully mete out life’s bumps, let alone this way.

It gradually became clear to me, too, that I had a substance abuse problem – more prevalent per capita in the gay community than in the general population – and I remain “in recovery” to this day.

Not too long after my HIV/AIDS diagnoses I left paid employment and have been living on a combination of private and public disability pensions ever since.

Having wandered from MCCT in the mid-1990s, associating myself with an off-shoot congregation briefly, I found my way back to the United Church of Canada – to an Affirming Congregation called Trinity-St. Paul’s United – in 1999. It has been my church home ever since. The community aspect of the church is important to me. To be without a church home, or to be without the members of other support groups, seems inconceivable. This is not to say that I accept all church doctrine, nor all the ‘suggestions’ of the recovery fellowships. The nice thing about Trinity-St. Paul’s, or TSP, has been the sense of freedom I feel to air difficult questions – of the faith, life, and so on – without fear of judgment. In fact such questions are encouraged and celebrated.

In addition to my substance abuse recovery I am also being treated for the concurrent disorder of Bipolar II and longstanding issues requiring counseling. I know that neither spirituality nor formal religion hold all the answers. Shit happens. I do not believe God to be a master puppeteer, pulling strings in the world from some lofty place, letting – as Rabbi Harold S. Kushner put it a generation or more ago – bad things happen to good people.

My beliefs have evolved a great deal, needless to say, since the occasion of my baptism by immersion. Yet, like the author of Reason to Believe, I have a from-the-inside understanding of where evangelical Christians are coming from – and it’s often not the place of secular caricatures.

Indeed, and I recognize this may seem contradictory, I still have such a passion for music – even the “praise” music of the evangelicals. However much I no longer accept a good part of the doctrine in the lyrics, I can easily be swept up in the emotions, even just the tune, of such music.

There’s a song that I listen to a lot, and repeatedly since Craig’s death in 2007 – a song that would not find its way into my congregation, I don’t think. And even though my ideas of the nature of The Divine are ever in flux, and can be more accurately described as ‘Mystery’, I can settle on the comfort of a familiar Jesus figure when I sing along with Third Day. (You may need to change “Jesus” to something else mystical; seeking comfort need never be limited to religion.)

An embedded Youtube video I had inserted has been disabled “by request” so I can only transcribe the lyrics:

To everyone who’s lost someone they love
Long before it was their time
You feel like the days you had were not enough
when you said goodbye

And to all of the people with burdens and pains
Keeping you back from your life
You believe that there’s nothing and there is no one
Who can make it right


There is hope for the helpless
Rest for the weary
Love for the broken heart
There is grace and forgiveness
Mercy and healing
He’ll meet you wherever you are
Cry out to Jesus, Cry out to Jesus

For the marriage that’s struggling just to hang on
They lost all of their faith and love
They’ve done all they can to make it right again
Still it’s not enough

For the ones who can’t break the addictions and chains
You try to give up but you come back again
Just remember that you’re not alone in your shame
And your suffering


When your lonely (when you’re lonely)
And it feels like the whole world is falling on you
You just reach out, you just cry out to Jesus
Cry to Jesus

To the widow who suffers from being alone
Wiping the tears from her eyes
For the children around the world without a home
Say a prayer tonight


John Marks might think I haven’t let go as thoroughly as he has. Inasmuch as I still struggle with faith, he would be right.

But do I believe in the Rapture of the Left Behind series?  No.  Or in a reunion with loved ones after death?  No.  Somewhere deep inside, however, I find a strength and wisdom which – while they may well be mine – are not inconsistent with the qualities ascribed to the God of many names, of many religions.

Read more about topics raised here, here, and here.

Finally, in the spirit of not taking ourselves too seriously, I direct you to Rapture Letters. It’s a place where The Book of Revelation, and the convenience of email, merge (and is apparently a genuine service).

The richness of life with friends

It was, as I said on my facebook page, an amazing night of remembering, crying and healing at the 25th Annual Candlelight AIDS Vigil. A true sign of the richness of my life is that I didn’t get the chance to hug everybody that I knew there.

Maybe it was the fact that it was the 25th annual vigil or the fact that it’s been 20 years since I’ve known definitively that I have HIV/AIDS – and have lived to tell about it. I don’t need to know why tonight’s ceremony was extra special.

But as I fill in the details you’ll get the picture.

I sat mere steps away from the AIDS Memorial with a group of friends who have steadfastly supported me in my return to the recovery fold. Later, after several of them held me as I completely shuddered with tears, a total stranger introduced herself, asked if she could also hug me, and quickly became a found soul-mate – a friend I hadn’t met yet – as we began to share about people we both knew.

The evening started with the reading of a message from Cleve Jones, particularly to mark the 25th anniversary. The significance was lost on no one who had seen “Milk” in the past year or so, or those of us who know of him as one of the founders of the NAMES Project AIDS Memorial Quilt.

Three co-hosts masterfully presided over the ceremonies – multiple-Juno Award winner Billy Newton-Davis, himself a long-term survivor of HIV/AIDS, another long-timer Shari Margolese, and 16-year old Quinn Johnston, Shari’s completely healthy son – the first time a mother and child had shared these ceremonial duties at the vigil.

The music throughout the hour was fantastic. I know these vigils have always touched me but there was something about the music and the stories tonight that really hit home. Several references to long-term survivors (and I’d be in that group) were also very meaningful.

25 more names were added to the memorial, bringing the total to something over 2600. Candles were lit, the light passing from person to person, until the entire crowd was bathed in the glow.

I cried plenty of tears during the live music which included Nathalie Nadon singing “La Vie en Rose” by Edith Piaf, a song – “Can You See Me” – commissioned for this 25th anniversary composed and sung by Glenn Marais, and the nineteen voices of “Guys Like Us” singing “I Believe”. As we placed our candles around the site the Regent Park School of Music String Ensemble performed the always evocative Pachelbel Canon.

That’s when the silence was broken as we hugged and cried, and cried and hugged, met old friends, made new ones and just tried to take in the gratitude we felt for such a touching community event in the early hours of Pride weekend.

A huge thank you to all who were responsible for such an important evening.

The Ride Home

I may add more to this story as details come back to me. As I told a friend tonight, these rides home all seemed alike to me so it’s difficult to recall specific details of any one ride. It just boils down to a large chunk of bad memories during, as adults called them, “the best years of your life” and may add to the explanation of my tendency to go inward as much as I do, seeking a refuge-like higher power.

These many years later it is difficult to separate the good days from bad – my lasting impression is that they were all bad – as I recall the bullying I endured on the school bus ride home from school each day.

The trip took about thirty-five minutes, depending on whether or not we had to stop for a ship going under the seaway lift-bridge, from Ormstown to Salaberry-de-Valleyfield. There were a couple of stops leaving Ormstown, as we dropped kids at the end of their laneways, but most of us disembarked at close to our respective homes in Valleyfield.

The bullying included being squeezed in my seat by Debbie, a large-size girl who hugged me with head-locks and peppered me with mocking kisses. The older guys in the back (the smokers) taunted me about my dental work (“Give us a smile Kenny!”), often leading to a wedgie, and they took particular interest in me when, on rare occasions, I brought my tuba home. Now this was not the wraparound sousaphone seen in marching bands but rather an upper torso-sized model which I perched between my legs. Since my repertoire was limited, particularly without music, the most frequent request I could play from memory was the big bear’s theme from A & W root beer commercials of that time. It was a big hit, ridicule misinterpreted as appreciation notwithstanding.

Arriving at my stop, at the corner of Boulevard du Havre and Simpson Street, the gang would count down as I got off the bus and, with all sorts of relief and adrenaline coursing through my veins, raced down the block to my house. It was great to get home where, after a brief snack and a chat with Mom, if she wasn’t teaching piano in the living room, I would immediately start packing my newspaper carrier bags with the afternoon’s Montreal Star, destined for the forty or so customers on my route. Although I was sure one or two of the buildings I entered were haunted I mostly enjoyed a very good relationship with my customers, my good manners and conscientiousness appreciated by people who were much older than the trouble-makers on that bus.