Looking ahead to adventure, challenge, and healing

As I write this, it is mid-afternoon on Saturday, April 15, and it’s +3C with light snow. I am truly quite finished with this endless, last gasp of winter. In one month’s time I will be in Australia (where it will already be the 16th and, if all goes well, the “extreme walk” into the outback I have traveled to take part in will be well under way). I am excited and a little nervous about the challenge ahead, but above all I am looking forward to being “off the grid” for the better part of two weeks with plenty of time to process some of the internal baggage I’ve been carrying as I undertake this long and demanding journey into a landscape I never imagined I would have the opportunity to experience.

Some of my regular readers may know that two years ago, following a trip to South Africa, I nearly lost my life. I should have known better, but I was sorely ill-prepared for the effects of extended travel on planes and buses. I did everything wrong and failed to recognize the warning signs of impending danger. After surviving this critical event, I found myself afraid of risking extensive physical activity, even after receiving a clean bill of health on all counts. This is, I learned, a not uncommon, if misguided, response.

One of my first longer training sessions.
Better weather earlier this week. Did not last.

Naturally, I ended up hopelessly out of shape. In pushing myself into an enthusiastic training regime earlier this year, I soon found myself with an inflamed bursa and torn meniscus on my right knee. Cue the physiotherapist. My knee has responded very well—I am walking without pain for the first time in months and now, if only the weather would cooperate just a little, I will be as good to go as I am likely to be.

Which will hopefully be good enough.

This little venture is a mere 223 km/11 day hike over mountain ranges. What could possibly go wrong? (Don’t answer that!) If you are interested, I invite you to check out the site—the Larapinta Extreme Walk is a fundraising event created by fellow book blogger Tony Messenger (Messenger’s Booker) in support of a vital Aboriginal women’s initiative. Donations can be made if desired; every little bit helps.

Where I’m heading to. From: http://www.larapintaextremewalk.com.au/

As much as I am looking forward to this experience as an opportunity to reflect, grieve, journal and, with luck, open up the writer’s block that has dogged me these past few months, I am also very excited to have the opportunity for some serious bookish conversation along the way. And before I head home I will have a few days each in Melbourne and Sydney, where I already have tentative plans to catch up with other readers and literary-minded folk, as well as an online photography friend I have known for years but never met.

So wish me well as I continue to train, and as I get the reading, reviews, and writing I’m presently committed to completed in advance of my trip.

Looking back in anger: A personal reflection on World Bipolar Day

You might as well haul up
This wave’s green peak on wire
To prevent fall, or anchor the fluent air
In quartz, as crack your skull to keep
These two most perishable lovers from the touch
That will kindle angels’ envy, scorch and drop
Their fond hearts charred as any match.

Seek no stony camera-eye to fix
The passing dazzle of each face
In black and white, or put on ice
Mouth’s instant flare for future looks;
Stars shoot their petals, and suns run to seed,
However you may sweat to hold such darling wrecks
Hived like honey in your head.

—from Sylvia Plath, “Epitaph for Flower and Fire”

I have known mania, and the imagery in this poem sparks with an intensity that excites and disturbs. When I encounter the words of one of the many poets known (or thought) to share (or have shared) the same affliction, I often find an undercurrent that causes me to flinch for just a second. Not that it diminishes the beauty or power of their words in any way—it is rather an echo in the dark, a faint recognition flashing by.

Image copyright Joseph Schreiber, 2012

It is World Bipolar Day, and this is the first time I have stopped to recognize the fact. I have spoken in, and around, my own bipolar diagnosis, but I have never addressed it formally in my writing. Even now I find myself uncomfortable discussing it. On the one hand, I am fortunate. I respond well to medication. I am, to use that distasteful term, “high-functioning.” But I do harbor a deep anger toward this condition that was part of my life many years before I finally careened through a brutal month of manic psychosis and found myself committed, and ultimately diagnosed, at the age of 36. I was, in classic bipolar fashion, the last person to suspect that I had a mental illness. Even though I, and those around me, knew something was terribly wrong, the stigma and lack of understanding around mood disorders—not to mention the radically impaired insight the sufferer has when they are ill—stands as a barrier to timely intervention. And then there is the matter of actually accessing care. One almost has to crash completely—by which time it can be too late.

Between my first manic episode in 1997 and the second in 2014, I experienced more than sixteen years of stability. I transitioned, became a single male parent, built a career out of nothing, and eventually became the Program Manager at an agency dedicated to working with survivors of acquired brain injury. I loved my job. Looking back, I can now see how the last few years of that period were marked by an increasing tendency toward hypomania. With my psychiatrist’s support I cut my medication back. And then things started to fall apart at work—things beyond my control, but it fell to me to try to pull things together. Then I started to fall apart at work, until I spiraled into full blown mania. Not psychotic, but it matters little. The damage was done.

The agency I worked for, dedicated as they are to supporting clients with disabilities including co-morbid mental illnesses, treated me with distrust bordering on contempt. My only contact with them has been conducted through a workplace advocate and my insurance worker. When return to work was discussed they refused to consider any possibility that I could work there again. Almost three years later with long term disability finally at an end, they still have my personal belongings.

Nine years of employment and dedication to that job now stand as a gaping hole in my life—a life already filled with gaping holes. And that is one of the reasons I hesitate to talk about mental illness (although I have never hidden my diagnosis). What can I say? Bipolar is not my identity any more than transgender is. Both fuck up your life. Leave wounds that do not heal. Find you fumbling through mid-life with little to show for your years but a lot of things you can’t talk about. And periods of time you cannot even remember.

So this is why I find it hard to write about my experience with mental illness. There was a time, following my diagnosis, that I devoured everything I could find, just as, a year later I hunted for books on gender identity. Two pieces of a puzzle I had inhabited—the periodic mood swings and the persistent, life-long feeling that I was not the female person everyone else knew me to be—had finally fallen into place. I had two, if you wish to be specific, explanations that come neatly labelled and defined within the covers of the DSM. It was, for a while, a source of relief.

Today I rarely read any literature that deals with mental illness or gender. But I am aware, more than ever, of being doubly stigmatized. And, most painfully, within the spaces where you would expect acceptance—in the human services profession and within the queer community. Thus the anger.

And what is this anger? Grief. The deep griefs I carry, layered now with more recent bereavements. It has become, for me, an existential bitterness that plagues me, an inauthenticity that defines the way I intersect with the world.

The legacy of mental illness is this: after diagnosis I was advised not to dwell on the disease, not to talk to others with bipolar; I was not deemed “sick” enough to warrant outpatient support or psychiatric follow up. I was left, like so many others, to flounder in the dark. It would take seventeen years and a spectacular career-destroying crash before I was able to access proper psychiatric and psychological support. I am still lucky. I am stabilized. And the forced detour into what may become an early semi-retirement has afforded me a space to write.

Now I need to find a way to write my way through this weight of grief. And begin to heal.

I’ll leave the last word to Sylvia Plath, with the final (fifth) stanza of the poem quoted above:

Dawn snuffs out star’s spent wick,
Even as love’s dear fools cry evergreen,
And a languor of wax congeals the vein
No matter how fiercely lit; staunch contracts break
And recoil in the altering light: the radiant limb
Blows ash in each lover’s eye; the ardent look
Blackens flesh to bone and devours them.

—You can find out more about the International Bipolar Foundation here, and a prose poem I wrote to honour a dear friend who lost her desperate and brave battle to bipolar last year can be found here.

Beginning to write through grief: A reflection & link to my poem at the Sultan’s Seal

I am, as many know, dealing with a multi-layered, complex grief—my mother, my father, and one of my closest friends—all lost within the last six months. When my parents died in July, I entertained an immediate grief project, my own mourning diary, an echo of Roland Barthes. I started with a subdued passion, an ache as intellectual as emotional. In truth, my emotions were, I can now see, constrained and intellectualized.

I was numb.

Others reached out to me in those early weeks, sharing their own stories. The terrain of grief is rocky, I was warned. The journey long. The pain uneven. But, although I am in mid-life, a loss of this nature—doubled and complicated—was something I had never faced.

Then my friend took her own life sometime on September 1st. Even though I knew, in my heart, that such an event was almost inevitable, the pain and anger tore me apart. I knew she had tried every available option she could afford to fight an erratic and devastating variation of bipolar disorder, and I fully respected her decision and her right to make it. But suddenly my world was a darker, lonelier place.

And she had lived half a world away.

Again, the first thing I thought of was to write. This time, my distance from her demanded and informed my need to write—and I knew exactly what I wanted to do. I wanted to gather words and sentences from her writing and our communications, and together with some photographs from my trip to visit her in South Africa, create an elegy.

An offering.beach

Drawing inspiration from a prose piece by Breyten Breytenbach, and the sound driven writings of my friend, Daniela Cascella, I set to work. And I knew exactly where I wanted to publish this memorial if I was able to realize my vision—The Sultan’s Seal, a most wonderful space created and curated by Egyptian writer, Youssef Rakha.

The result, “And I will Tell You Something,” was published this past weekend. Three hundred words, five images and almost three months shaping, reshaping, listening and accepting the silence that emerged. This is perhaps the most emotionally demanding piece I have ever written. Yet, now five days after my words were finally set free in the world, I feel a tremendous sense of rightness. An element of peace. I still ache, but, with this prose poem, I feel I can begin to heal.

And I hope that others may find something in it too.

Personal reflections on identity, for better or worse, on Canada Day

Today, July 1, is Canada Day.

Exactly one year ago I was in Cape Town. I arrived back in the city that day at 5:30 in the morning after seventeen hours on a bus from East London. Dragging my luggage with its maple leaf ID tags I encountered many who would note the flag and say “Ah, Canada, that’s just about the perfect country, isn’t it?” Invariably I was hearing this from black or coloured South Africans and, I have to confess, at that time in my country’s recent political history I was feeling most despondent, embarrassed even, to be Canadian. For the very first time in my life.

What a difference a year makes.

canada-159585_960_720Hard to measure the shifting sands in the glass but while our Federal election last year brought home to the ruling Conservative Party the cost of divisive politics, the limits of denial and disrespect, and the risk of stoking xenophobia to sway sympathies; we now seem more and more like an island in a sea of unrest. And, I don’t pretend that we are immune to hatred, or that we don’t have a legacy of shame four “our” treatment of the First Nations on this land, but this is a huge and vastly underpopulated place so there is greater room to breathe.

At least for now.

As Canadians we also have another advantage: an identity that is relatively amorphous, ambiguous, sometimes even apologetic. A contest held in 1972 on the CBC Radio program, This Country in Morning, famously invited listeners to finish the statement: As Canadian as ________. The winning entry?

As Canadian as possible under the circumstances. And proudly so, I say.

Which leads me to wonder about identity, a question that has been troubling me of late.

There is a series of advertisements running on the television for a company that, for a fee, will analyze your DNA and tell you what your ancestry is, in percentages, no doubt with colourful pie charts to justify the cost. Perhaps you’ve seen them or something similar. You know, there is, for example, a man who always believed he was of German heritage but thanks to a little DNA sleuthing he discovers he is Scottish. He promptly trades his lederhosen for a kilt. And there are other variations but you get the drift.

How can your DNA define your cultural and ethnic identity? It might and then again it might not. Peoples migrate, borders shift, cultures evolve. An aboriginal survivor of the 60’s Scoop that literally pulled First Nations youth out of their homes and communities and deposited them in white foster homes may justifiably have a need for healing and reconnection with their heritage, but a DNA test that simply reflects possible ancestral bloodlines going back centuries or longer does not tell you who you are. Cultural and ethnic identity are complex and cannot be understood divorced from lived experience.

As I find myself, midway upon my life’s journey, to paraphrase Dante, I carry two questions of identity that, to some degree, offer an understanding of myself that reaches back into childhood and adolescence. But even if they are grounded in some understanding of a genetic/epigenetic heritage I own, the degree to which they can and do form part of my identity is troublesome. Identity is, as far as I am concerned, a choice. That is not to say it is not grounded in fact and reality at some level, but what does it mean to say “I identify”? And how is that to be differentiated from “I am”?

I have bipolar disorder (I touch on this in some of my earliest blog posts) and I was born with a pervasive sense of a gendered self that was at odds with the sex/gender that I appeared to be (I address this most explicitly here). I did not begin to understand either of these facts until I was in my mid-30’s. But they are inextricable from my experience of myself in the world, they are formative and I have no idea what it would be like to have existed without either although I have learned, with greater or lesser success, to live with each one. Both are treated, neither is cured. I have written about both, but I would be hard pressed to say that I identify as either bipolar or transgender. Would someone identify as a diabetic? Would you say you identify as brown-eyed?

I know people who do hold a mental health diagnosis or a gender identity with pride. Perhaps I did too at one time. Perhaps I still do even though I don’t want to admit it.

Recently my psychiatrist suggested, having reviewed the only records she had from my past—the report of an inpatient stay during acute psychosis almost twenty years ago, the turning point at which I finally began to unravel the fractured and unhappy state against which I had raged for several years—that she did not believe I was bipolar. That cheerful announcement set off weeks of rumination in which I replayed all of the episodes of depression and hypomania I had surfed for so many years, blaming myself for a failure to commit to any single course of study or employment. I began to appreciate how my understanding of the place I find myself at this point is contingent on having an explanation, an illness to blame. Combined with acute gender dysphoria I can assuage the sense of failure that haunts me. Justify all the paths I took or did not take.

Or, as my therapist challenged me yesterday, have I been using bipolar as an excuse to avoid grieving the losses I have experienced?

I don’t even know how to begin to grieve and the thought terrifies me. And, if I find my way through it all, perhaps I will write about it. But I do believe it may be the one path I have not yet dared to take.

Finally, what of gender? That is a topic for many essays I’m afraid. My differently gendered existence is essential to who I am, but again, it is not my identity. If forced, I “identify” as male, but prefer to understand myself simply as a man, and every time I qualify myself by appending trans* I feel reduced, dehumanized. One only has to exist within the LGBTQ community, such as it is, as a man attracted to men, to feel the full force of transphobia from within. And to have transitioned when I did, before it was fashionable and trendy to be trans, other transgender men were often exceptionally homophobic toward anyone who identified as gay. For everyone who claims to defy gender binaries there is a whole cast of characters propping them back up. I’m probably in there myself.

pride-flag-meaningSo, although I tick three out of the five basic boxes in LGBTQ, I have no Pride. But then I have no shame either. And identify? Well, here I stand I can be no other. Even if I don’t feel I belong. June is always tough for me. This month with all the difficult emotions stirred by the Orlando shootings has been especially hard.

I actually do belong to an LGBTQ community and have good friends there. My very closest friends are all queer. And yet I always feel like I am on the outside looking in. An impostor. But in what way? And who decides who belongs and who does not? Even apparently marginalized groups seem to find a way to splinter and divide.

Which brings me full circle to the angry racist, xenophobic, sexist and homophobic aggression and violence that threatens us all, at a time and in a world in which we should know better.

At least, for now, and on this day, the one thing I can say is: I identify as a proud Canadian.

To write one’s self: reflections on the stories we have to tell

IMGP2473 - Version 2

Don’t write yourself
in between worlds,

rise up against
multiple meanings,

trust the trail of tears,
and learn to live.

             – Paul Celan

 

I have resisted the act of writing my self. Writing about myself. The conceit of imagining that my own experiences hold a value, interest or point of connection for others. I wanted to tell stories, inventions, creations that were removed from the inexorable ordinariness of my own life.

IMGP2477 (1)I am not sure I have that gift. I fear that all the stories I have that are worth telling are real. Not true stories. I do not believe there is an objective truth to the stories we tell ourselves or others. But they are real.

For many years I worked as a storyteller. Not in the conventional sense of the word. I worked with survivors of acquired brain injury and their families. Whether I was meeting with clients, advocating with professionals or leading support groups stories were my medium. I had hundreds of stories, I had a facility for remembering the broad details of the experiences of our clients and their families. Tales of courage, tales of horror, tales of the ordinary and the everyday. I was able to pull out an example whenever I required one to offer warning, hope, validation. And I was able to do so without revealing identifying details.

IMGP2465 (1)As always I was the master of ambiguity. After all that was how I engaged with the world myself. But what is essential in a professional capacity is crippling in a personal sphere.

I have touched at the edges of my own stories, in so far as I am learning to articulate them, in this space from time to time. And I am beginning to wonder whether it is a folly for me  to assume that I have the capacity to make up stories, to entertain with carefully constructed lies.

Or if this mess of a life that has piled up in front of me like heavy wet snow against a plow has to be cleared, examined, transformed into words on a page before I can even begin to figure out if there might be something here that someone else might want to read.

IMGP2461 - Version 2 (1)In the coming days I will officially be two months out from the night a blood clot very nearly took my life. My chest still feels tight, bruised and cracked ribs are slow to heal completely, but I can finally get out and walk with comfort – something that was still impossible a few weeks ago. Rat poison is my friend.

I took my camera out into the neighbourhood this afternoon. The foliage is turning colour, the sky is crystal blue, yet I found my attention turning to the cracks in the road, the fallen leaves in the gutters. I photographed the little things that caught my eye and tried not to think too much.

 

 

Further notes from South Africa: Wildlife and quiet times in the Eastern Cape

I have been in South Africa for just over a week now. It’s been an amazing opportunity to meet people and observe the country on its own terms. The closest I have had to a typical tourist experience has been our day trip to Addo Elephant Park. Nothing quite prepares you, on your first visit, for the sight of these huge majestic beasts looming ahead on the road, appearing out of the bushes. And there is so much more to see than elephants. We were stoked to encounter two young rooikatte along the roadside. These lynx are a rare sight at the best of times and we were able to sit and watch them for 15 minutes.

Rooikat
Rooikat
Addo Elephant Park
Elephant  – Addo Elephant Park, South Africa

The value of taking time to relax, soak in the countryside, meet fascinating individuals and spend quality time with my friend has been exactly the medicine I needed. In a few days I will make my way back to Cape Town for the much more urban, cosmopolitan side of my stay which will, in its way, be quiet and introspective. Cities can be good for being alone too.

Old sheep
Old sheep
Eastern Cape farm garden
Eastern Cape farm garden

My endeavour to gather more South African literature to bring home is going well. So far I have collected a stack of second hand books from a little shop in East London here in the Eastern Cape and have another stack waiting for me back in Cape Town. I have been digging through my friend’s bookcase for titles to look for here or back home and last night I was thrilled when my favourite author, Damon Galgut, won the Sunday Times Literary Award for South African fiction for his novel Arctic Summer. So, a fine literary excursion to date.

South African sunset - All photos copyright JM Schreiber
South African sunset – All photos copyright JM Schreiber

Otherwise it has been a relief to step back from my normally heavy engagement with news and social media. I did read with dismay about the terrorist attacks in France and Tunisia. I was relieved that my American LGBT brothers and sisters have achieved a long overdue milestone. But I came to South Africa in large part to put as much distance between myself and my life at home as possible for a few weeks and, for now, watching waves crash on the shore or sitting on the stoep and watching the sky burst with colour in the evening or listening to Breyten Breytenbach reciting poetry in Afrikaans is therapy of the best kind.

Solstice to solstice to solstice: A note from South Africa

Over the past year I have embarked on a journey that began, unexpectedly, with the recognition that I had allowed pressures at my job to consume me, to drive me to the very brink of a complete breakdown. It was summer solstice when I removed myself from the office, imagining at the time that I would soon be back and on track. I had no idea how sick I was and no real appreciation of how much I had sacrificed to work and children. Now, with work in tatters and children grown I wondered if I had really lived the full and rewarding life I imagined that I had. Finding myself (again) in mid-life has been difficult, dark and lonely – a task I felt ill prepared to take on.

But it has been the very best thing that could have happened.

From a very low point last December, winter solstice, my life has started to change in very real and important ways. A wonderful therapist and proper medical support have been crucial, while finding a supportive community has helped me start to move out into the world in an honest and authentic way. But, much to my surprise, blogging has opened up the world in a way I had not anticipated. I began with no clear objective, fueled with manic energy, spiraled into a little anxiety driven meandering as my world fell apart and solidified this year into a basically book focused blog.

Along the way I made a friend who has become a ballast for me – a touchstone, someone who understands the experience of navigating the storms of bipolar disorder because she rides them herself. Someone who is also queer. And an avid reader.

Nobel winners waterfront CT Indian ocean

However, getting together for coffee required a little planning. I live in western Canada, she lives in South Africa. And so I marked this past solstice, trading summer for winter, in Cape Town. Then I boarded a bus for the Eastern Cape province where I am now. I have long had an interest in South Africa, with the literature and history of this complicated and important place. The dust has not settled here.

My friend has given me a gift I will not soon forget. Our friendship has opened a space for us to explore our own personal journeys and to talk about our respective countries – to compare the differences and the similarities.

And I am also  guaranteed to arrive home with books.