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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Bernhard 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.
It is rare that I indulge in sharing a significant quotation simply because it speaks to the space in which I find myself but I keep returning to these words from Intimate Stranger by Breyten Breytenbach (Archipelago Books, 2009).
“Writing is fishing for memory in time. Viscous. Time black. Sometimes you see it flitting just below the surface – memory – miming time. Memory takes on the blackness of time. Memory will be time surfacing. Use word as bait. Beat the water. Beat the weird beat of baited words. Bloated. Wounds. The bleeding words like wounded boats on a black sea. Let the fleet wash up. The coast is the beginning of the sea’s wisdom. It comes with the territory.
Words have their own territory, they return home as in a song. The fish only discovers the water once it is removed from it. This land is a memotory.
But not peaceful. Memory as trigger for territory and tongue. The mind is full of bloody pieces staked out by tongue. Is there room enough? Memory killing memory.”
This book, a selection of meditations on reading and writing, was waiting for me when I returned home from the hospital just 10 days ago. I have been keeping it close and dipping in and out of it. Breytenbach is a South African poet, writer and painter but his life, his work, his vision is borderless. In this collection he offers practical advice, shares poems and reflections on the power of the word, drawing on his own experiences as well as the wisdom of a legacy of gifted writers.
Memory is the foundation of writing. One draws on experience when putting pen to paper – poetry, fiction, memoir alike. And it is memory that is weighing me down, threatening to drag me beneath the surface; a memory that haunts and obsesses me because although it involves me, I will never access it.
I have lost a space in time. Like a bruise it bleeds beyond the boundary of the injury, reaching backward and forward from the instant a clot in my lung threatened to stop my heart. Days are absolutely gone, the day or two before the incident, the day or so in ICU and the first days after waking. But I can’t let the blackness go. I cannot let it wash out to sea. I want to hold the moments, hours, days in my hands but I cannot. They do not belong to me. They are about me. They will never be mine.
I have read my discharge summary until I know it inside out. I have pestered my anxious son with questions. What was it like to find me in distress? How did you get to the hospital? How did you feel? Stupid questions. I am struck with shocked disquiet to realize that my family did not know if I would survive.
If I had not survived the blackness would be complete. Viscous. Time black. Inanimate from my perspective. My own memories lost. The sole distorted possession of those who knew me, no longer mine.
Sands are shifting. I have some fishing to attend to before the next high tide.
As soon as I was coming around a few days after my recent near death encounter (and I don’t mean that in any mystical tunnel of light sort of way) I told my kids that I wanted them to bring me books. I could barely stay alert long enough to get an entire sentence out but I wanted books. They obliged me. Wisely I asked for one of the few books on my shelves which might count as a mystery – Lost Ground by South African author Michiel Heyns – which has proved to be fine company indeed though I have only been able to read attentively for a few days now. They also brought along one of my endless stream of incoming purchases, a gem from Twisted Spoon chosen for Women in Translation Month – Primeval and Other Times by Polish writer Olga Tokarczuk. A surreal and fantastic work it looks good but I may have to push it a little further down the month. Reading is tough work after cardiac arrest. Go figure.
Now that I am at home, facing three blood tests each week and a host of other medical appointments all over the city when I have been told I can’t drive for 6 months, I find myself reading and re-reading my discharge report. I am living on warfarin – rat poison – afraid of bleeding too much or worse, clotting too easily and having a stroke. The devious little pulmonary embolism that triggered this whole adventure (a likely souvenir of a hellish 24 hours of flight time packed tightly into 28 hours on my recent return from Cape Town) is still sitting in my lung and will, they say, eventually be absorbed. My left leg is swollen and bruised due to a hematoma, a probable complication of the resuscitation process. I watch people jogging by outside on this hot summer day and feel like some sort of Frankenstein creature, dragging this heavy black and blue leg around.
Even though my friends have been amazing – I had a steady stream of visitors throughout my hospital stay and have no shortage of offers for rides around town – I feel a despair settling in. I don’t know where to turn, where to dig into the towers of books surrounding me. I wonder what would have happened had I slipped off this mortal coil two weeks ago. What would my family say about all these books on which I have squandered my limited funds? For heaven’s sake my open shelved coffee table loaded with books and stacks of journals – Granta, Paris Review, Music & Literature – came apart when the paramedics tried to pull it out of the way. I feel overwhelmed rather than excited about diving in to all the new books I have acquired in the past month. I had to buy an extra bag, after all, to get my haul of books home from South Africa and now they too sit on the shelf taunting me.
Will the magic of reading come back with my health?
I have also wondered if this experience is that final kick in the behind that I need to get serious about my own writing. I’m in my mid-50s. I’m not getting younger. Coincidentally while in the hospital I signed my first contract for the publication of an essay in a book coming out next Spring. It is a niche project – a collection aimed at gay, bisexual and transgender men – but my first professional publication credit all the same. So how much life with all its mess, joy and agony does one have to drag his or her sorry self through before there is enough fodder for a story? I wrote throughout my youth, being a writer was always my dream, a strength in every course I completed in university and every job I have ever held. But when it came down to creative writing I always insisted that I had to live a little first.
At this moment I feel that I lived so much that I don’t know where to begin. And now I have almost died too.
Sometimes you fool yourself. You believe that you are invincible. You know that bad things happen to good people. You know that they have even happened to you. But time and time again we are caught off guard reminded of the wisdom of Monty Python’s idiom: Nobody expects the Spanish Inquisition.
If I had had more experience traveling I might not have made the mistakes that may very nearly have cost me my life this past week. I thought that by focusing my first visit to South Africa to longer stays in two areas, I would limit my travel time. But instead I ended up with long plane flights and interminable bus trips. Next time, and I definitely hope there is a next time – *the hematologist looks at me askance* – I hope to take longer and fly between major centres once I get to South Africa. The buses have a certain charm and I definitely got to meet and talk to people in a way I might not have otherwise, but to top off my three week excursion with a three leg flight home with very short turnarounds was a major miscalculation on my part. It sounded great. But I had no idea exactly how tight a three hour stop over is, especially if you have to clear customs. Longer stop overs would have helped. Baby asprins, compression stockings. Everyone has recommendations now.
Yet although I was tired and swollen upon my return, it would take a few weeks before my journey caught up with me. Last Sunday night, or rather, early Monday morning, two and half weeks after I returned home, all swelling and fatigue seemingly gone, I suffered a pulmonary embolism. Well actually, it was not clear what had happened at first. I have very little memory of that day or an evening event I had been to with friends. My 25 year-old son, a creative, troubled but wonderful soul, heard me moaning. Thomas came upstairs to find me disoriented. He called Emergency and started chest compressions.
The kid saved my life. In one of those odd ironies, or twists of fate, toward the end of my time away, Thomas had suffered a couple of acute panic attacks so severe that he twice was taken to the hospital. In the second situation he was referred on to a psychiatric nurse he liked and she suggested a 4 week outpatient program he had just started. Mind you my little detour has interrupted his plans but they will contact him as soon as there is a good point for him to join back in. Me, I will be in the hospital for at least another week, but the more “functional” I am, the more I can spend time reading.
So good with the bad. Who knows? Maybe the two truly are bound more tightly than we realize.