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.

Hope as verb, noun and/or feeling


Everything I am feeling in this moment is in the context of having watched, via television and Twitter, the roller-coaster of events in Egypt these past 18 days, of having just listened to the Feb. 6 (2011) edition of Tapestry from CBC Radio with Mary Hines, and of having made the seemingly Herculean effort to order refills of my HIV, diabetes and “head” meds.

And already I have forgotten why I could only describe myself as despondent when I opened up this page.

Towards the end of the week, say about twelve hours before the start of Friday Prayers in Cairo, I was in discussion with some peers about the now-tired links I make between the distinct hells of elementary school and my adolescence, then of my instant activism after the 1981 bath house raids in Toronto (just add water, or steam, and stir!)  Oh, and then I added that leap fart of logic that permeated me for so long “…if anyone deserves AIDS I do.”  Even though I quickly pointed out that I have dismissed this asinine proposition, intellectually, I allowed that it may still hide in the nodes of my psyche as traces of seemingly “undetectable” HIV viral load might hide from the best available tests – though I did not use that analogy.  Frankly HIV could probably hide better, regardless of whether it is or not.

It stands to reason then, if reason is all I can stand on, that I might feel despair given Dr. Kenn’s self-diagnoses (AIDS-because-I-deserve-it and mental-illness-because-well-life-just-piled-up).

Listening to myself, as the conversation with my peers played over and over during the walk home, I understood – was aware of, made sense of – almost immediately how the 51-year old Kenn brutally judges (ever-present tense) the Kenneth of childhood, the Ken of adolescence and the Kenn of a promising adulthood.  Then, with a deep sigh, I recognized (again) how tiring this is – to me, sure, and I can only begin to imagine how much so to any audience (at least anyone not paid to listen!)

John’s question emerged, from among the group, asking me how I would respond to someone presenting my self-evaluation.  Not a new question, of course, I said I’d tell them it (circumstance=deserving) was absurd and to cut myself some slack.

That’s what I left with Thursday evening, not picking it all up again until listening today to the aforementioned edition of Tapestry (which, in all candour, is this loner-wannabe’s “church”-of-choice more than any other these days).   While the Thursday evening mood personified wanted to dislike what I was hearing, I could not.

The stream of consciousness of the past couple of weeks (and blog posts) went like this: forgiveness (others and myself) does NOT mean condoning anything, the letting go frees me up for other things – happier, productive, more self-fulfilling things.

Now what?  (Interestingly, this is one of the questions being asked repeatedly about Egypt this weekend).

Should I pack up for Haiti?  No, I don’t think so – not today at least.

Do I believe that wishing to do anything is a foolhardy distraction from what I’ve been carrying, and working on, for years?  Would a change of course, however big or small, negate everything?  No!

Having lived for so long like I could not imagine surviving another year, never mind quarter-life (and more than occasionally not wishing to!), what small steps can I take to change my attitude?

“Fake it ’til you make it”?

“Act as if…”?

Well, internalizing those phrases would be a pleasant change from the self-defeating mantras, so – if nothing else – let this be a beginning.

I understand, and have experienced, how ‘getting out of self’ can lighten the load a great deal.  Therefore I could do a lot worse with my time than thinking about ways to do this.

I would rather be cut down in the middle of something, only at the moment of my death, than continuously sharpening my focus on seeing it come from an undetermined distance.

“Now what?”

Better to live unto/into hope than fear (which I must always recognize is inherent in any comfortable certainty of hopelessness).

A stroke of spirit


Jill Bolte Taylor, author of “My Stroke of Insight” and featured in a popular TED lecture, was this week’s guest on CBC Radio’s Tapestry program. I still get goose-bumps listening to her story, in which she “experienced that absence of experience which becomes one of bliss” as I shared about a year-and-a-half or so ago.

Whatever was going on with me during what I called, among other things, my “Uncle Albert” experience several years ago, I certainly identify with JBT’s descriptions of nirvana, euphoria and losing her mind. (Uncle Albert was a character in the movie “Mary Poppins” who, when he laughed, would float up to the ceiling which is what I experienced feeling – even without laughing.)

Here’s Jill Bolte Taylor’s twenty minute talk:

Although I do not know the year of my experience I know Jim was in the hospital at the time and it was June because I remember going in this state to the annual vigil at Toronto’s AIDS Memorial. It was in the hallway outside Jim’s room I first noticed myself floating above the friends I was leaving with.

Could this have been a form of mania long before my bipolar II diagnosis? I hope not. It felt different than any hypomanic episode I have experienced consciously.

I am absolutely certain that my friends at the hospital that day – and friends at the vigil – with pandemic-fuelled compassion which had become instinctive, must have thought that AIDS dementia had set in. I, like Jill Bolte Taylor describes, couldn’t care less and, while experiencing euphoria, was also aware that this sense of complete sense of ease was new to me (without being chemically-induced) and so I questioned it.

So, while I vividly remember getting some wondering looks from friends in the hours and days which followed during my experience, I also recall sitting with a friend who is a therapist, though not mine, and she just revelled in my descriptions of what I was experiencing, even a day or two later, and encouraged me to just “go with it”.

One of JBT’s take away messages/questions from her “Tapestry” appearance were:

“Would I come back, if I come back, what would it take for me to come back, what would it take to motivate me, to want to recover when recovery meant pure pain and the world was spinning a million miles an hour, much faster than my mind which has this enormous hole in it, to ever be able to contemplate and make sense of again?”

I forget the ingenuity of the brain, how the left and right hemispheres are physically separate, as if to emphasize their distinctiveness. She describes the left as “separate from, single, intellectual, worried” while the right is “enjoyment, the present moment, I am life-force”.

Jill Bolte Taylor’s experience, and now her life’s work, shows us that we get to choose, or train ourselves, which hemisphere of the brain we wish to be in. I need all the encouragement I can get to step out of the left side.

Calling Uncle Albert…