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

 

-

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

Post #1031: My latest ‘Aha!’ moment


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

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

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

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

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

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

Coming out as the end of a beginning


This morning on CTV’s Canada AM Kevin Newman, of Question Period fame, was promoting a very important segment on this weekend’s W5 program (Saturday at 7 p.m. ET) and, in the accompanying online article he wrote, “Coming out is toward the end of the process for our gay children” – when learning to accept it is just starting for parents. A very important insight, I thought, as I recalled my own process.

(This weekend’s W5 will not only include Newman’s gay son, Alex, but will focus on out gay athlete @ScottHeggart who I wrote about last spring.)

Kevin’s empathy and insights are quite remarkable, perhaps more so to any families who have not yet been faced with a child’s dramatic struggle towards self-acceptance, and “coming out (as) toward the end of the process for our gay children”.

By the time that I came out to my family in 1981, at the age of 21, I had been through a whirlwind of attempts to make peace with myself but, almost completely untethered and in the shadow of a traumatic childhood and adolescence, I had done so in the fog of abuse of alcohol and other drugs, and in a rampage of sexual activity at a time when HIV/AIDS was just beginning to permeate our collective conscience.  So much living before I could be sure enough to come out!  Notwithstanding the exceptionally loving acceptance of my family more than one reckless genie had been let out of the bottle.

As I look upon the rest of my life as recovery I am optimistic for the future of younger members of my community with helpful, empathetic media coverage and young role models and their families so willing to share their stories.

W5’s ‘OFFSIDE’ airs this Saturday at 7 p.m. ET on CTV, along with livechat at CTVNews.ca

For Romeo Saganash, MP, a turning point


I am touched by the frankness and honesty with which New Democrat MP Romeo Saganash has chosen to address his “medical problem”, alcohol dependency, and I hope that he can work his way through the first acute phase of treatment with personal integrity and with the knowledge that millions of Canadians have his back.

Both as a Member of Parliament and a member of the New Democrat caucus, it is my duty to follow a code of conduct in keeping with my role as a Member of Parliament and the confidence that my constituents placed in me when they elected me.

Last Friday, my behaviour caused an unfortunate incident that delayed an Air Canada flight between Montreal and Val-d’Or. I want to apologize to the other passengers and staff for what happened and for any inconvenience I caused them. I would also like to offer my sincere apologies to Air Canada and the Aéroports de Montréal.

Neither fatigue nor stress can justify what I did. I need help to overcome a medical problem, a dependence on alcohol, like far too many other Canadians.

I am not looking at excuses, but I know that profound scars were left on me because of my time in residential school. I never shied away from that. The death of my friend and mentor, Jack Layton, also greatly affected me. Like him, I needed a crutch. The leadership race wore me out, on top of taking me away from my children and my loved ones even more often.

Life on Parliament Hill can be hectic and exciting, but it is also full of obstacles and pitfalls. Many of my colleagues can attest to this.

I have asked my leader to give me leave so that I can take the necessary time to treat this illness. I am deeply grateful for his support and the support of all my colleagues in this difficult period of my life.

I would like to thank the citizens of Abitibi—Baie-James—Nunavik—Eeyou for their constant support in this difficult period of my life and ask for their understanding. I can assure them that my office will continue to serve them and that my New Democrat colleagues will be available to help while I’m on sick leave.

My priority is to serve my constituents to the best of my abilities and it’s with deep humility that I say thank you and see you soon.

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.

Mental Illness Awareness Week through Saturday


The stereotypical walls are long gone this Mental Illness Awareness Week which finds me bridging between a recent, quietly-endured “brown out” state-of-being in Toronto and my absolute delight as I bask in the love of family members gathering in the splendidly autumnal Town of Perth in eastern Ontario.

I’m thinking of Jamie Hubley‘s loved ones and friends as the first anniversary of his death approaches. And of David Dewees and all who cared so much for him.

In the midst of these tragedies it was an occasion to speak candidly about the despair that can lead to suicide and acknowledge times in my life when I have felt those demoralizing feelings.

Yet there I was, last year like this year, trying to keep my emotional head above water by talking about it, them, vague ideas, trying not to raise alarm – ich!

CBC Radio’s Tapestry began an exploration of “coping” last week and it seems likely that a telephone comment I left may be aired either this week or next.

Producers narrowed me down to what, for me, was the liberating diagnosis of bipolar II several years ago.  I emphasize “narrowed down” because my original email was a long list of things, familiar to my readers, I check off as having coped with:

*-childhood bullying by an elementary school principal/head teacher*
*
*
*-bullying by peers in high school*
*
*
*-alcohol abuse beginning in college*
*
*
*-coming out as a gay man, as fully as possible, in 1981*
*
*
*-contracting HIV no later than 1989*
*
*
*-leaving paid work in 1990, to which I have not returned*
*
*
*-surviving AIDS-related infections (while caring for a few – and mourning
the deaths of – countless peers)*
*
*
*-believing that “if anyone deserves AIDS, I do!”*
*
*
*-being involved in political actions, HIV/AIDS-related and otherwise*
*
*
*-surviving a taxi-pedestrian (me) accident  in 2003, with a broken femur
and right radius, hospitalized for five weeks at the height of SARS in
Toronto*
*
*
*-being diagnosed with type-2 diabetes (despite being alarmingly
under-weight)*
*
*
*-being diagnosed with bipolar II (which may turn out to be the best
thing that ever happened!)*
*
*
*-losing my older brother (a mentor who was also gay, also HIV+) in a
freak fall on the sidewalk in 2007, resulting in traumatic brain injury (he
was on life support for about two weeks)*
*
*
*-personal work and therapy intermittently on all of the above.*

I don’t expect I’ll hear Coping: Part 2 over the air this weekend, which is probably just as well given the family gathering which may find me underneath a giant pile of leaves!  However I never miss the weekly Tapestry podcast.

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.

My 3 entries in “Touched By Fire” 2012


I’ve just entered three photographs in Touched By Fire, a non-profit program “to celebrate, support, and inspire the work of artists with mood disorders such as depression, anxiety, and bipolar disorder. An initiative of the Mood Disorders Association of Ontario, the project includes a non-juried, inclusive on-line gallery and a juried annual gala ‘the art show you have to be crazy to enter.'”

Digital Monet

Sunrise-Cathedral Bluffs, Scarborough

Different But Equal

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…


…this!

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.

For those who loved Kyle


I’ve been wrestling all day – less with what to write than how to write it – so I thought I’d begin with an absurd fruit-plate. Leading with humour is something I’ve done for as long as I can remember. Regardless of what was going on inside, my outside presentation was most often light if not downright hilarious.

Granny Clampett imitation? Kenneth does a great one!

The soprano soloist at church? I sang a masterful likeness.

My repertoire of farm animal sounds and imitation flatulence?  Unequaled!

So it is that I identify with comics whose gift is thrashed from unpleasant early experiences in life – despite presenting myself as a funny kid within a happy family.

I must roll aside that instinct to entertain at the most difficult of times as something terrible happened over the weekend in the community of housing units we call the Bleecker Street Co-Op. Other than to say “Hi” in the lobby now and again, or at a co-op party, perhaps at a panel discussion, I did not know him so it wasn’t enough to hear that Kyle Scanlon had died to put together who he was.

The first picture shocked me into recognition.

That big round, bearded, animal-loving face always had a smile in our infrequent exchange of greetings.

As social media spread word of his death today it was very moving to see how many people were so much closer to Kyle.

Kyle completed suicide and, right from the very first posting on the subject, it is clear that he leaves behind shocked, inconsolable, loving friends.

Trans PULSE where he was a founding member.

The 519 where he’s worked for ten years, first as the Trans Programs Coordinator and most recently as Education, Training and Research Coordinator.

As reactions have distilled over the hours, very familiar questions are asked repeatedly.

Why would he do this? He always seemed so bubbly and cheerful!

After coming through so much, why would he be despairing? Could it have been an accident?

I wonder why he didn’t reach out for help.

Of course I do not know that he didn’t.

Within the shock and grief there exists a self-mutilating belief that maybe we could have done something…if only.

These are questions I sometimes worry about leaving unanswered whenever thoughts of desperate action – thoughts of the “catch and release” variety, mostly – cross my mind.

The sadness Kyle’s friends and loved ones are feeling is no doubt deep and unspeakably real.

I hope there is a bit of comfort in sharing with one another, as you will, the experiences that best illustrate Kyle during happier times with him.

gudbuy t’jane on trans and suicide

Jerry Sandusky guilty, now what?


In the hours following the conviction of their once-revered Jerry Sandusky, Penn State is most anxious to move on.

After my exclamation on Facebook of “Yes! Yes! Yes!”, attached to a media account of the guilty verdicts on Friday, I wondered how the victim-survivors were feeling. Having invested my emotions, and my own survival story, by proxy into the trial I can say I was elated.

One of the most galling things about Sandusky, as evidenced in his Bob Costas interview, was his supposed naiveté about the gravity of things he was being accused of. Whether a defense or a pathology, why is it that so many pedophiles believe they can justify their crimes? (Don’t try to Google for answers. You’ll be disgusted.)

It has been a long journey for me just beginning to talk about the anonymous sexual abuse I encountered as an adolescent following long-term bullying by an elementary school principal. Anything to do with sports reminds me of that teacher, the coach of half of the sports teams in school, who harangued those of us who couldn’t, or wouldn’t, participate more than we had to. So Jerry Sandusky, for me, embodies the characteristics of both my abusers.

I did not begin even the most minimum of therapy about this until I was about thirty, shortly after testing positive for HIV in 1989. At first it was difficult enough to connect the dots, as I still like to say, let alone getting in touch with the feelings of trauma – so it was an issue I set aside fairly often when I didn’t feel I could cope.

Yet the void never goes away and, untreated, nothing fills it.

Another occasion which pointed me towards more healing was after I was hit by a cab in 2003, fracturing my femur and wrist. In the course of post-traumatic stress counselling I was encouraged to peel back the veil of any previous traumas so, naturally, my childhood came up again. One of the tools my psychiatrist tried, himself the son of Holocaust survivors, was to recommend Primo Levi’s Survival in Auschwitz. Like anything that might hurt before it feels better I put off reading the book for quite a long time. But read it I did and it unleashed a hunger in me for similar books of real-life terror and, in some cases, survival – think Elie Wiesel, Viktor Frankl and many others.

When the Penn State scandal first erupted I was triggered quite sharply and found myself engrossed in news coverage as if in a trance. I mentioned this to a fellow survivor and mentor when we met for a coffee last fall. Our chosen coffee shop was quite crowded and so, it being a colouful fall evening, we opted to take a walk with our beverages. He literally walked with me in my distress. Something he told me, and it is echoed by valuable resources such as MaleSurvivor.org, is that we are well advised to avoid anything more than cursory coverage of such news stories or, at least, be self-aware to know when enough is enough.

There’s not much more I want to hear about the main perpetrator of Penn State. His future doesn’t seem to included anyone he can harm. I wait to see how other officials at the university fare in this.

Above all, I hope the completely vindicated survivors can continue their healing journeys with whatever help or compensation is deemed fitting.