Tag: recovery

After three years, where am I? A personal reflection

walk on the perimeter
of your dreams. it’s not
that the roads are blocked
but that the hearts have
given into the violence of the wind

“Friday, March 25 at 4PM”
Etel Adnan, translated by Sarah Riggs

Into the second week of February and here we are, still living in interesting times, as the apocryphal expression goes. The past three years have brought disease, war and natural disaster, and have, sadly, served to demonstrate just how little we can care for one another. For many of us, it has also been a time of deepening isolation, especially for those with fragile connections to the community and outside world.

For days now I have debated putting my feelings into words, uncomfortable, as always, in talking about myself, even if most of my non-review related writing falls into the sphere of the personal essay. Of late, I have mostly written about how even that avenue feels fraught with barriers and challenges that my own sense of self worth cannot overcome. Then, when I turned to look at some of my occasional journal notes, I found that what I am feeling now I had already clearly articulated two years ago. Little has changed, except that the despair runs deeper and the mental health resources that were so important to me are now gone. I had overstayed my welcome in a system that is buckling under the pressures currently crushing healthcare services here and elsewhere.

Since the pandemic started, I have crossed into my sixties, encountered new medical challenges—none especially serious, as far as I know, and as of yet, no Covid—but I have not been outside the city limits and, apart from my immediate neighbours and my children, I have engaged in little social interaction. Finances have been a major factor, as have problems at home, yet I fear I have become increasingly withdrawn over this period. Trapped even. I go out every day, marking kilometres on the trails but the satisfaction that used to come with a good outing is increasingly elusive. I want to travel again and yet I cycle between anticipation and anxiety and keep pushing possible departure dates back.

I feel old, I feel tired and overwhelmed by loneliness. I fear I am drifting. It’s hardly a new sensation but it somehow seems that the past few years have made me feel at once anchored and anchorless.

I am also troubled by a continuing anxiety about my identity. Or lack thereof. At a time when identity has become such a loaded term, for better or worse, I can’t understand how people take some measure of pride, even comfort, in being queer or trans or something. I feel that the layers of my fundamental identity—sex, gender, sexuality, nationality, politics, religion—have all been stripped away. I am worse than naked. I am emotionally and socially flayed. Who am I now? Better yet, what am I? I have no job, no title, no vocation, no partner, no value.

I read. I write about the books I read and publish my thoughts in this space, typically trying to remain to the sidelines of my reviews. Any other words I try to write spiral into the void. I distract myself with little satisfaction, little connection, and a meagre measure of confidence. What do I have to show for sixty-two years? A differently gendered past rendered invisible on the outside that has left me in a body I will forever be at odds with? And a chronic psychiatric condition that has robbed me of the freedom of  trusting my own worth, my own sense of self, my own existence.

There are far more books dealing with gender identity and mental illness on the shelves these days than there were twenty-five years ago when I was navigating crisis after crisis on both counts, but at this point in my life most of them seem to be speaking to someone alien to me. Rarely do I hear a discussion on either subject and think: Ah, yes, that’s so familiar. I wonder who I might be today if an understanding of the two separate and yet interwoven conditions that set me apart from such an early age had been available when I needed it. I might have had a different life, but I’m not convinced it would have been better. By the time one reaches sixty, the tangled complications of a life lived are impossible to unwind and reimagine. One can only look ahead.

In recent weeks I’ve been reading Etel Adnan’s collection Time. Published when she was well into her nineties, the poems in this handsome volume would have been composed when she was in her late seventies and early eighties. Clear and precise, her poetry crosses borders and time, touching again and again on myth, memories of war, desire, the body and the inevitability of death. With wisdom and grace, the poet untangles, reimagines and reminds me that life is marked with beauty and longing even as the end looms closer.

So where should one write? Back to the past or into the future?

Weights and measures: 2020 draws to a close

Slippery section ahead, December 31, 2020

At the end of a year that redefined most of our goals and aspirations, I find myself in a strange space. This was, for me, a year of challenge, adaptation and growth. I had imagined I would mark a milestone birthday—one I was anxious about—with a special trip of some sort. I did not even have a destination in mind but it had to be important. Of course, travel of any sort was not to be. Instead, I find myself here, three months after turning sixty, in better physical shape than I’ve ever been, with about 1,000 kilometres clocked for the year, mostly on the trails, roads and pathways close to home.

In 2020 I became a runner. A trail runner.

The year began with a diagnosis of osteoporosis. It’s a condition that led to the death of my mother and one of my great aunts, but I my case, it turns out that a medication I took for twenty years to control bipolar disorder had been blocking the absorption of vitamin D. I immediately started supplements and monitored my calcium intake and made an appointment with a physiotherapist. But I was afraid that running, something I had flirted with, would have to be avoided. Strangely that—something I had never even had—was my greatest sense of loss and my greatest motivation.

Progress was slow. Through the winter I worked on flexibility and core body strength, developing, with my therapist,  a weight and resistance training routine. For aerobic exercise, I walked up and down the embankment I live above. As the trails started to clear, I was given the green light to start running. Initial efforts were choppy, but I would aim to cover longer sections of pathway before stopping to catch my breath.

At the same time, as early lock down restrictions began to ease, my psychiatrist and I discussed switching meds. Over the summer I started taking lithium, a drug I feared a little, but the potential side effects with other options sounded more concerning. The switch has not been smooth, but it has only enhanced my running. Or rather, in going off the original medication I quickly lost twelve pounds. Turns out less of me goes further! In mid-September I messaged a runner friend to tell him that, for the very first time, I started to run a familiar trail and I just kept running until I ran out of road.

I’m no marathoner, that is not my intention, and some of the trails I love are a challenge, but the buzz of feeling myself grow stronger has not left, especially as I push out over longer and longer stretches of the steepest inclines. There’s a healthy degree of caution too because I don’t want to fall, but I love the personal focus of this activity. My goals, distance and pace, are my own, but there is still a connection. The runners you meet on the trail are generally ready with a smile and a nod—a friendly acknowledgement. I may be going three kilometres to their ten, but it doesn’t matter.

Of course, the medication has had a less positive impact on other areas of my life. Through August and September I struggled with the books I managed to read. I found it difficult to get through more than one or two pages at a time. From mid-September to early December I accumulated a pile of half-finished books, writing was impossible, editing agonizingly slow. I figured that lithium was affecting my focus and concentration. I could remember a similar problem with the same med years earlier. I started to strategize ways to make reading and writing work in this new zone. I also made the decision to step away from my volunteer editing commitment, something which was very heavy this year, thanks to the pandemic.

However, hiking and running continued without any concern until I began to find myself dizzy and oddly fatigued on the trail one day. I felt like I hadn’t had a decent sleep in months and, in fact, I hadn’t. It wasn’t until I began to notice a marked loss of energy and significant muscle weakness that I finally realized about how often I would find myself thinking about  how much I was looking forward to going to sleep. All along my fitness tracker had been rating my sleep quality poorly but I had assumed it was an issue with my Fitbit, not me.

Over the past month or so I have made a number of adjustments to my sleeping environment that, if not perfect, have greatly improved my sleep. My focus, energy and mood are so much better. So, living well on this new med means extra attention to sleep. I can handle that. Mind you, there’s more. My blood work recently showed an elevated calcium level—not great given the osteoporosis—but another possible side effect of lithium. So in January I see an endocrinologist to rule out serious problems, but in the meantime I intend to read, run and write my way into the new year!

Wishing you all the best of the year ahead. We’ve gotten this far!

Looking back and looking forward on July 27th

It’s July 27th, for years my wedding anniversary, but my marriage has been over, in practical terms, for nineteen years. More recently it marked the day my brothers and I accepted an offer on our parents’ house after only a week on the market in a region that had seen no sales in a year. But most importantly, July 27th is the anniversary of the day I almost died.

I have written about this event, but, of course I remember nothing about it. And with no memory of the moment of crisis, survival seems surreal. What I do know is that I came home from an evening event and told my son I was exhausted. I had in fact been tired and swollen for several weeks following a trip to South Africa, but I considered to be part of jet lag. I had never travelled such a long distance. So I got changed and stretched out on the living room sofa. My son was downstairs, drinking as usual, and playing videogames. Something distracted him or, he says, he would have put headphones on. I must have called out or panicked when I went into cardiac arrest, I don’t know, but he heard me and came upstairs. He called 911 and with the operators guidance performed CPR until the paramedics arrived.

When I got to the hospital they x-rayed my chest and discovered I had a large clot in my lung. The cardiac arrest had been caused by a pulmonary embolism, secondary most likely to a DVT. It would be several days before I was laying down memories and able to begin to make sense of what had happened. I’d be lying if I said I come to terms with it all yet. I live with a kind of stunned silence. All I know is that the chances of surviving a pulmonary embolism and cardiac arrest outside the hospital is very small. Someone must be there and willing and able to act. In that moment when nothing else mattered, my son saved my life.

Today is the fifth anniversary of my near death experience. My son Thomas is thirty and I will be sixty this year. Strangely, a more recent medical phenomenon has altered my life in ways I could not imagine. Early this year I was diagnosed with osteoporosis. I wrote about my initial reaction and my positive hopes about living with this condition. The pandemic has delayed my ability to move off the medication that has been causing bone loss, but that is now underway. Visits with my physiotherapist were also on hold for a while, but they have also resumed. But what I really notice has surprised me.

I think that in the past, I have taken on diet and exercise in a haphazard way. Regular walking has been important for some time now, especially since I moved close to the network of trails I love so much, but now that almost-daily walking, hiking and jogging are as essential as three high calcium servings and vitamin D supplements. My bones depend on it. And I now I also have a weight training routine I do every other day, with extra planks, balance and some yoga on the alternate days. I am possibly stronger and more muscular than I’ve ever been in my life. I mean I’m not going to win any competitions, but there is a level of fitness that I can really feel. After all, this is for me. This is about living well and maybe even reversing some of the bone loss.

It is also about living through a pandemic. Perhaps people who take their health for granted are less inclined to take the risks seriously. I don’t know. But the number of people out walking, cycling and running lead me to hope that the need to stay closer to home and the relative safety of outdoor activity will reward some of us with more physical and mental fitness than one might expect. May I be one.

Beginning to understand what keeps calling me back: A short reflection

As I write this I am in Pune; this evening I fly back to Bangalore for a few days. Then I head home. Away from heat and greenery, back into cold and snow. Plenty of both.

As I look back on the past five weeks or so in India, images and memories shift and tumble like the pieces of coloured glass in a kaleidoscope. Diwali in Wardha, Blossom Book House in Bangalore, the crowded dusty streets of Kathmandu, the rocking rhythm of the train from Delhi to Jaipur, Jantar Mantar, the grand astronomical observatory built by Jai Singh II and the magnificent forts towering above the city he founded. Quiet days amid the lush tropical beauty of Kochi, and stimulating literary engagements in Pune.

I learned a lot on this visit—about India, Indians, and myself. About intersections where noise and colour can overwhelm, where nuance can be lost and small wisdoms can be gained.

This has been more of a spiritual encounter for me, if I can use that term. I’ve come a little closer to understanding what it is I am seeking in the repeated act of intentional, albeit short term, displacement. It has, I believe, something to do with death. With loss and grief. With finding a way to experience that which I have mourned, that which has caused me pain and anger, as a life-giving positive force.

It will take time to unravel this thread, this tangled web of thoughts. Now, I suppose, I need the space that distance will grant me to reflect a little. At this moment, from a balcony level with tree tops, I want to drink in the foliage and think about the past few weeks without forcing or directing anything.

What is it that stands out? The people, of course. Friends. Reconnection with old friends, encounters with new friends, and finally meeting face to face with those only known online. The luxury of long conversations. Exploring the landscapes and cityscapes with those who know it well and love it. Who feel it in their souls.

For now, that is what I will hold close to my heart as I prepare to head toward home.

We all have a cruel month, mine is June

June lengthens, rising toward the longest day of the year. This is my most painful, impossible month and this year my awareness of the layering of repeated circles around the sun is taking on a new intensity.

Like a film flickering at the edge of my field of view, Junes of the past keep rolling in and out of focus. This week. Convergence.

Twenty-two years ago today, I was released from a period of involuntary hospitalization. The psychiatric ward was a strange place, with strange characters from the requisite Jesus dispensing wisdom in the dining room, to the young orthopaedic surgeon on suicide watch. I recall my time on the unit as the first opportunity I’d had in years to worry about no one but myself—and plenty of medication to ensure that I didn’t do too much of that either.

I was a manic patient in the process of coming back down to earth.

*

Eighteen years ago this week I had my first shot of testosterone. My partner of twenty-one years moved out the next morning. I cried for fifteen minutes, dusted myself off and moved on into a new reality. A single parent. A shape-shifter, slowly masculinizing.

Out of madness and into manhood. Or something.

Five years ago this week—summer solstice, 2014—I summited the heights of mania, once more, after a long steady climb over the crumbling rocks of my own sanity. I can only imagine the spectacle I’d become over the final months at the office. I remember trying to hold together an agency that seemed to be coming apart at the seams, everyone looking to me to fix things and ultimately taking the fall when I lost my grip. Nobody intervenes with a madman if that madman is doing a job no one else wants.

Nobody catches him when he falls or helps pick up the pieces. No one sends flowers.

The undignified end of my career forever unresolved. June 20, 2014, a day I can barely remember. A day I will never forget.

Exactly one year later I sought my own closure. Booked a trip to South Africa—the first and sadly only chance I would ever have to spend time with a close friend, queer and bipolar like me, but down a much deeper darker road, one with no escape, as it would turn out.

I timed my arrival so I would be in Cape Town on June 20, 2015. Imagining that I would invert my fortunes by marking winter solstice in the southern hemisphere. That I would stand and face the sun going down and bring to a close a difficult twelve months. Put it all behind me and move forward into a renewed life.

Reinvent myself again.

But of course, closure is a myth and life writes its own lessons. I would have to come to terms with death first. Very nearly my own within a month of returning home. Then my mother’s, my father’s, my friend’s.

I was torn open. Again. I’m still pulling myself together.

*

This June, for all the added hours of daylight, it’s darkness I am fighting. The malaise, the murky waters of the bipolar cycle were never my habitat until these past few years. To feel my spirit and energy ebb as the seasonal shift ushers colour into this dead brown world is difficult to bear. With the added rainbow intensity of Pride Month, ever reminding me of everything I cannot find within my own queered reality, I keep falling further into the dark corners of my own imagination.

All month I’ve been pushing against this current of discontent.

I can’t stop thinking ahead. This October brings my 59th birthday. Next year I turn 60. I don’t even know how I got here. No other milestone has pressed down on me like this one. I have a number of friends who are over 60, but not one of them is facing their seventh decade alone.

Alone. That is what I didn’t expect at this age. Or if I suspected it, I didn’t think it would hurt like hell. Alone is not a lack of people in your life. It is a lack of something you know is missing, that you cannot even fully define so it’s hard to know how to fill it. A close friend? A lover? Something to give your life meaning?

For me feeling alone is something pervasive. Embodied. Written into the physical and gendered trajectory of my existence. Here. In June. Once again.

*

June lengthens, rising toward the longest day of the year.

Passing rain. An image that stirs, the shifting light, sun, darkening skies and sun again, on a wet and glittering world. This is summer. Not quite but almost.

I simply have to hold fast.

A constant procession of ghosts: A reflection

August has passed, it seems, with little to show for itself. Smoky skies and an air quality rivalling that of some of the most polluted cities of the world curtailed much outdoor activity here. Further to the west, where the smoke originated and forests burned, it was worse. Now, as skies clear, temperatures are dropping and summer’s fading fast. Leaves are turning yellow. Autumn nears.

Two years ago today, September 1st 2016, a dear friend took her life. A second attempt after years of trying to fight off crushing bipolar depression. Unable to work and living on savings, treatment often meant driving to a public hospital, an hour each way. She lived in a small village in the Eastern Cape Province of South Africa. We only met once. I spent a week with her in 2015, but from the moment we first met online, it was as if we had known each other forever. We could joke and riff off each other, falling into a regular routine as a dysfunctional divorced couple that often fooled others. In truth, we were bound by queerness, books, and bipolar disorder. Soul mates shipwrecked in our own lives.

But, of course, I couldn’t save her.

In the months before Ulla died I held a certain distance. I was reeling from the recent death of my mother, followed closely by that of my father. Knowing that she was fragile, and, after three years, still grieving her own mother, I was unable to reach out to her to seek or offer support. We were both drowning, but her sea was darker and more deadly. It had been for a long time.

With my parents’ sudden and tightly timed deaths, I had imagined the possibility of an exercise of writing immediate grief—echoing Barthes and Handke—but the burdens of being an executor distorted and distended the mourning experience and, for the most part, these losses remain unwritten. Then again, my parents were in their eighties with long lives, well-lived, behind them. My friend’s death, at forty-six, was more complex. I knew it had to be addressed, not simply for myself but for a community of followers who responded to her actions intently and personally. It took three months to salvage words and craft a 300-word piece which was published, with my own photographs, in late November of 2016. Each time I come back to this eulogy I realize how much of my immediate grief is contained there, perfected and concise.

Who, and what, in the end, do we write grief for? If we are looking for catharsis, a way to move beyond grief, we may be disappointed. Perhaps grief simply moves with us, evolving and softening over time.

If Ulla’s death sits especially heavily at this time of year, at the moment there is an extra weight. Earlier this month, my son’s best friend lost a difficult battle with opioid addiction. He had been at our house quite a bit in the last weeks, and although clean at the time, he was really struggling. My son is devastated. He’s been seeking refuge in alcohol and routinely breaks down in a flood of tears and despair. His sister and I feel a loss too; Dylan was a common presence in our lives over the past twelve years, but to be honest, in recent times I wasn’t always happy to see him on the doorstep. He and Thomas have both, at twenty-eight, been fighting their own mental health and addiction issues for a long time. And they were not always good for each other. They could be up all night arguing—usually about politics, but sometimes about really “important” matters like the difference between a canon and fugue. Things could get violent. One morning Thomas broke his hand on Dylan’s head (and glasses). But music was their real bond. They wrote and recorded songs together and spent hours busking on street corners over the years. They believed in each other when neither could believe in himself.

As a parent it is agonizing to watch my child in pain and know that his is a mourning song I cannot write.

*

As September begins, I am aware more than ever that we are surrounded by a constant procession of ghosts. I’ve bought a two-bed flat and, at the moment, I’m deeply engaged in the process of emptying out closets, cupboards and rooms of accumulated stuff so that, by October 1st, my house will be empty and I will be settling into a much smaller space. The sheer volume of junk that needs to be dumped, donated, or moved is overwhelming. And with it, reminders of the losses of the last few decades keep resurfacing when I least expect it.

Out in my unfinished garage where I have amassed a mound of old, damaged furniture and broken objects waiting for pick up, I found a windshield propped against the wall. I have no idea what it was for or why it is there, but I know it was something my father must have picked up and forgotten. I’m surprised how much of him I couldn’t part with after his death—his Russian literature, a bust of Beethoven, a grandfather clock—all tangible reminders of a man who was so elusive, so hard to know.

Of my mother, there are few objects I wanted to bring home but her presence permeates so much of my life. Especially the one I tried to live in her image. As a girl and woman. Packing up children’s clothing for donation I find the beautiful outfits she crafted for her precious granddaughter—lined coats, fancy dresses—her attentions to Ginny’s wardrobe becoming ever more feminine as I, her only daughter, transitioned to male. I also unearth all the outfits I myself made for both my children in their early years when I was still determined to play the part birth had granted me. A part that, ultimately, has nothing to do with gender at all. I truly enjoyed creating beautiful things for my children. It just didn’t alter the sense that I wasn’t female.

And so, this house is also haunted by ghosts of myself, the selves I wanted to be, the self I became while living here. The self I still don’t know what to do with. I haven’t even uncovered the boxes filled with all my childhood photographs or angst-ridden adolescent writing. But documents with my old names, once-treasured possessions, and even a wedding dress have been revealed. Some will be retained, others hastily stuffed in bags and carted off to Goodwill.

Then last night, another more recent, unresolved ghost emerged. In a closet I found a manual from a leadership workshop I took a number of years back. At that time I was confident, more secure in my sense of self than I would ever be. My transition, in my mind, was complete and a success. But within a few years, my brief, yet promising, career in not-for-profit management would be destroyed by circumstance and my own mental illness. A loss I still have not come to terms with and yet it seems like something that belonged to another person. As if my life has just been a series of reincarnations that seem to leave me no wiser or further ahead.

And no more certain who I am.

And then there is my own addiction: books. Spread through three rooms, with most shelves double stacked, I shudder to think how many boxes there will be. No mercy for old magazines and outdated textbooks. They are bound for the recycling bin. But every time I scan my bookcases to collect charity sale donations, my decisions about what to hold on to shift. My anthropology and ecology texts are now gone, but my philosophy, classics and ancient Near Eastern history volumes remain. I notice that so many of the books I bought during my years of bookstore employment in the early 80s are still valued, even if I didn’t appreciate some for decades after purchase, whereas the literary bestsellers I devoured in my thirties and forties have been, and are, regularly pruned and sent off to new homes. Some of the obsessive tangents reflected in my collection are held dear, others are an embarrassment.

The books we read, and perhaps even more tellingly, the books we buy with the intention to read them, reveal a lot about who we are, who we want to be, and who we want others to imagine we are. More ghosts in our own lives.

And I suppose moving is one more opportunity to encounter, reshape, and even resolve a few of those ghosts—our own and those of others whom time, distance, or death have taken away.

Maybe even grieve.

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.

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

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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.

 

 

Wrapping up a month of healing with Thomas Bernhard and Wittgenstein’s Nephew

As I look back on a month which began, at least as I can best remember, in a hospital bed on the cardiac unit, it seems oddly serendipitous that my final read for August is a book that begins in the chest clinic of an Austrian hospital. I did not know much about Wittgenstein’s Nephew in advance beyond the fact that it dealt with madness, one of Bernhard’s common themes. I had ordered it, in all honesty, to reach the free shipment minimum on an Amazon order for a quality adaptor for my trip to South Africa. It’s long been on my wish list so I just tucked it in. I picked it up off the pile on my coffee table yesterday and could not put it down.

nephewBernhard is a favourite. I always find him, in his characteristic vitriol, to to be funny and wise. But this book is less caustic and more sentimental than I could possibly have anticipated. It is also a tribute to his real life friendship with Paul Wittgenstein, in truth a relative of the famous philosopher. In one singular paragraph that extends over a mere 100 pages, the narrator, one Thomas Bernhard, orchestrates a grand meditation on health and illness, sanity and madness, and the singular power of a friendship grounded in common interests and mutual intellectual respect.

As this novella opens Bernhard is recovering from surgery to remove a tumour from his thorax. While he lies in his hospital bed tormented by his roommates and ignored by the nursing staff, he comes to learn that his dear friend happens to be confined to the mental ward of the same facility, ironically in the Ludwig Pavilion. Paul, who may well have suffered from manic depression, is given to recurring bouts of madness. For Bernhard, the causes and courses of their conditions are analogous:

“Paul went mad because he suddenly pitted himself against everything and lost his balance, just as one day I too lost my balance by pitting myself against everything – the only difference being that he went mad, whereas I,  for the selfsame reason, contracted lung disease. But Paul was no madder than I am: I am at least as mad as he was, as he was said to be, though I have lung disease in addition to my madness. The only difference between us is that Paul allowed himself to be utterly dominated by his madness, whereas I have never let myself be utterly dominated by my equally serious madness; one might say that he was taken over by his madness, whereas I have always exploited mine. Paul never controlled his madness, but I have always controlled mine – which possibly means that my madness is in fact much madder than Paul’s.”

A blend of fiction and memoir, fans of Bernhard’s trademark crankiness will still delight in his rants against psychiatrists, German newspapers, simple minded people, literary prizes, actors and in the end, the cruel inevitability of death. But the beating heart of Wittgenstein’s Nephew is an ode to the life sustaining value of a true friendship. Paul is remembered as “the only man I had ever been able to talk to in a way that was congenial to me, the only one with whom I could discuss and develop any topic whatever, even the most difficult.” They shared a passion for music, an inherent restlessness of spirit, and a love of philosophical discussion and debate. A most rare and precious bond.

Ultimately, especially after the death of his wife, Paul’s spirit deteriorates. He starts to die long before his final breath is drawn, and as his friend witnesses this decline he finds it increasingly difficult to be in his presence. Bernhard pulls away, a rejection driven perhaps by the fear of dying engendered by those on death’s doorstop. This slender volume is a eulogy to a man of wisdom and spirit who could not maintain his grip on a world that is perhaps more mad and unstable than he ever was.

Thanks to the fallout from the clot sitting in my lung and the cardiac arrest it triggered, I am presently experiencing a faint taste of what chronic sufferers of lung disease like Bernhard might have known; yet, like Paul, I have also been diagnosed with a serious mental illness. At one point, Bernhard talks about returning home from the hospital and the reckless urge to do more than one is physically capable of managing. This leads to a rant about how the healthy fail to understand the chronically ill. This is an unfortunately valid observation, one that is especially true when the illness is psychiatric. A year ago this spring I suffered a serious manic break after 16 years of stability and although I am still “technically” employed, no one from my former workplace is allowed to contact me. I am a leper. Admittedly I have built a new community of support since that time, but I have had many more offers for assistance after my recent health problems than I can handle. It is quite a contrast. Last year I was prone to a few rants of my own about how I suspected that my employers would have been much more sympathetic had I had a heart attack.

A month out now from an event that still haunts my thoughts and emotions, I am gaining strength each day. Sometimes I overdo things and have to rest. A high level of smoke in the air from distant forest fires kept me housebound for week causing me to feel a little edgy. But I have read a decent number of books, including a few that may be among my best of the year thanks to the Women in Translation challenge. Winding up August with this heartfelt ode to friendship is perfect, after all there a couple long distance calls to South Africa on my cell phone bill. There were a few moments in those very early days in the hospital that there was only one voice I needed to hear.

Originaly published in 1982, Wittgenstein’s Nephew translated from the German by David McLintock was first published in 1989.