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.

Hard to remember when the world had colour

- Copyright JM Schreiber, 2012
– Copyright JM Schreiber, 2012

Granted midwinter in my part of the world is not the best place to find colour in nature. Branches are bare, grass is bunched and brown, snow is patchy and grey. But when I look back over the past year I can see how difficult it has been for me to register any enthusiasm to take my camera out. I walk a lot but I seem to want to stay in my head, maintain a fast pace, measure the rhythm of my boots against the ground. I circle the neighbourhood, walk with purpose on errands, but avoid the pathways and parks I have documented season after season these past few years.

Photography was a diversion, a relaxation and an isolated activity against a busy life at work and home. I would wander forest trails, across grassland parks or along the edges of rivers and lakes, framing and reframing the view and listening to recorded podcasts – discussions about books, philosophy, current events. It was a meandering, escapist pursuit. If I look back I have to wonder what I was escaping and where I had lost the capacity to dream.

Madness, mental illness if you prefer that term, brings back the capacity to dream because all the parameters are changed. For me it has brought words to the foreground but pushed the pictures to the background. Walking has become a means to expel restless energy, drive out the demons of anxiety and despair that keep reaching in. If I want to drown out the city noises I listen to music, the words in my head are my own.

Without being able to return to work at this time, I do feel a certain loneliness. But when I reflect on the years I devoted to a job that I believed validated and defined me, I realize that I was never more isolated than when I was working. Invisibility and an unwillingness to call attention to myself was not a measure of my successful transition. It was denial. To hide the fact that my past contained realities inconsistent with the man everyone knew, I believed I could not afford to allow anyone to get close. I captured colour in the outside world but painted myself with the blandest palatte possible.

A manic episode and all of the reckless behaviour and poor judgment it entails has left me with a professional legacy that I may never be able to salvage. I don’t even know if I want it back. Reclaiming my identity, being comfortable with my own history of sex and gender is a work in progress but I have to trust that it might lead me to a better more authentic place. It might even bring some colour back into my life.

As the year draws to a close…

At the beginning of 2014 my world was rapidly spinning out of control. There were clear indications that the extreme stress and toxic work environment I was living under was taking its toll. I was clearly struggling to hold myself together but like any good manic depressive I could not step aside and recognize the crisis that was unfolding. No one else in my life had the understanding to step in either and, in all fairness, I am not sure how I would have responded.

Now, at the end of the year, I have been out of the office for six months. My future is unclear. I had loved my work with brain injured adults and their families. It was challenging, rewarding and I was well respected. At least until I went crazy.

As soon as I walked away from my job I realized the price I had paid to build a career from community field worker to manager in less than a dozen years. I had intentionally alienated myself from people. I have always been a person inclined to isolation, shy in a curiously outgoing way. Public speaking does not phase me at all. I could speak to a crowd of 300, riffing on a theme if necessary, but face to face small talk is uncomfortable. The thought of baring my soul to another person in real time, over a coffee perhaps, is almost unbearable. In my life I have made few friends and had only two significant love affairs. And somehow I had managed to convince myself over the past decade or so that in addition to the challenges of raising children on my own, the social interaction provided by my work with hundreds of clients and professional colleagues would suffice. Close friendships and romantic relationships were not required.

I was wrong. But what now? I am in my 50s. I have repressed the very uniqueness of my history, that which had always set me apart. The very queerness of my being in the world. The ostensible and hard won success of fighting to be true to myself in the world was turned to dust in an instant. The road ahead suddenly looked lonely and long…

Slowly I am recovering. Much slower than I expected perhaps, but this unplanned respite has forced me to explore, re-evaluate and reach out. My therapist (thanks Jane) has been an important sounding board. Blogging and making contact with both bipolar and bookish fellow travelers has been vital. It has allowed a space for cathartic dumping. A medium for strengthening my ability to clearly articulate my thoughts and reflections. It has given me confidence to move out into the world closer to home.

Thanks to the fact that I have not been working I was able to volunteer at our writer’s festival and meet writers I admired from around the world, all of whom are in my age range. Financial constraints encouraged me to cancel my TV since I was generally using it as a mindless distraction. Consequently, reading and music have regained the attention they deserve. And when it is not -20C, like it is at the moment, I make a point to get out every day, frequently just to read and write at a local coffee shop.

So here is a song and a haunting video to carry you into the new year. It goes out especially to my brilliant friend of Blahpolar Diaries fame (infamy?) whose typically colourful ode to the therapeutic value music inspired this post.

The lonely journey of life

- Copyright JM Schreiber, 2013
– Copyright JM Schreiber, 2013

I had become, with the approach of night, once more aware of loneliness and time  — those two companions without whom no journey can yield us anything.
Lawrence Durrell, Bitter Lemons of Cyprus

Five months have passed since I left my place of employment, deep in the manic vortex of a mental health disorder that had been stable for so long that I failed to recognize the indicators that work stress was taking a critical toll. The first thing I did was hire a psychologist, someone I believed would be able to help me address some of the serious realities that the return of bipolar symptoms threatened to expose. I trusted that her experience would provide a safe space for self exploration and I have not been proved wrong. Mind you I was pretty manic when I arrived at her office, but over the months we have worked together to unspool many of the challenges and concerns that I brought to our very first session.

At the core of our explorations over these past months has been the loneliness I feel and my persistent ability to reinforce the very barriers that maintain this loneliness. When there are people in my life on the superficial, safe level; I cherish being alone. Now that I am making some positive and healthy attempts to connect with others, loneliness seems to follow in the wake of each moment like a hangover.

I don’t know the extent to which my mood disorder has impacted this recurring sense of social isolation. Certainly the up and down waves of manic depression have been marked by episodes of outgoing behaviour, often in conjunction with poor judgement, followed by retreat to safety and protection. There are also temperamental and identity factors that have skewed my experiences. Now my son has shared with me personal concerns that mirror my own in a manner far closer than I ever expected but may help explain the much more severe social anxiety from which he has suffered all his life (and treated with alcohol in recent years). I am not even sure what to make of his situation but I also know that as an adult he has to find his answers on his own because I am weary enough carrying my own baggage.

I accept Durrell’s edict about loneliness and time as necessary for growth, but they can weigh heavily because no matter how much we achieve on our journeys, there always seems to be more open road ahead that, in the end, we can only travel alone.

Manic Implosion: Venturing into the third section of Damon Galgut’s In a Strange Room without warning

About a month ago I had an opportunity to talk briefly with Damon Galgut following his appearance at Wordfest here in Calgary. He published his first novel at 18 and I shared that I had wanted to write when I was younger but wanted to live first, completely unprepared for the messy and complicated path my life would take. So we spoke about the challenge of winnowing out a story that runs close to bone from the detritus of life lived. He pointed to my newly signed copy of In a Strange Room, his 2010 Booker short-listed novel, and admitted that in this, of all his works, he felt that he had most closely captured the essence of his self. And he achieved it, I later learned, by telling three tales which recount actual events from his life and feature a character named Damon from perspectives that often shift from first to third person to a detached observer, sometimes within the same sentence or paragraph.

So far so good.

7199962The first two sections involve travel and more or less unresolved interactions and attractions between the remembered Damon character and people he meets while he frets and wanders through parts of Europe and Africa with a restless inablity to settle himself. The prose is tight and evocative with the open ended reflections and ambiguity that feature in my favourite of his writings. But I was sucker punched by Part Three: The Guardian. Not only is it harrowing in its intensity, but the devastating action centres around a woman in the throws of a full-blown suicidal manic pychosis. I could not help but relate as a caregiver but more critically as someone who has experienced the full impact of manic psychosis from the inside. My blessing, if there is one, is that I have never been especially suicidal or inclined to self-harm, nor do I drink or use drugs. All of those factors are added to the mix in this account.

And it takes place in India.

It is not a secret that his close friend Anna is not in a good way, when Damon agrees to allow her to accompany him on the first part of a trip to India. He has been before and intends to stay and write for several months, but it is thought that the change of scenery might be a positive and healing experience for Anna. Her life is beginning to unravel around her and the creative, vivacious woman he has known for many years is tipping dangerously close to the edge. With a stock of mood stabilizers, tranquilizers and sleeping pills she promises not to drink or indulge in recreational drugs on this excursion – a vow sullenly defied as soon as they take flight. Her mood escalates, and behaviour becomes increasingly frenzied and unpredictable from there, culminating in an intentional overdose while her already weary guardian is close at hand but not paying close attention.

Throughout this process and the weeks that follow, Damon’s concern is stretched beyond affection to annoyance to guilt and back again. While Anna fights for her life in ICU, a British nurse and another couple from the village where they are staying are co-opted into a tag team to provide support and relief for Damon at the hospital where cockroaches and rats scurry about and, although care is free, all supplies from bandages to drugs to all other medical items much be purchased by friends or relatives who trek back and forth to the pharmacy with lists. As Anna begins to recover and relocate to more crowded and unattended wards, she not only becomes increasingly volatile and unpredictable, but her erstwhile crew of attendants have to attend to all her care including propping her over the bedpan and cleaning up the splashing mess afterwards.

Care for her actual mental health concerns is not part of the treatment plan.

To make matters worse, attempted suicide is a criminal offense in India and the police are awaiting Anna’s release so they can detain her. An escape must be planned and executed. Finally she is safely returned to South Africa, but she and her support network are shattered and strained at both ends. Sadly her successful suicide is only delayed, not avoided. And her traumatic spiral leaves those who love her and even those who get caught up in her whirlwind of self destruction, with wounds that will take their own time to heal long after she finally achieves the rest, or self martyrdom, that her illness drives her to desire.

No one wins.

My own manic psychosis was maintained to my home where the refrigerator filled with inedible meals and my children destroyed the yard while I struggled to make it through the days. As my grasp on reality slipped and the long standing issues I had been fighting off for years bubbled and distorted in my mind, a month of growing horror ended in a morning of escalating fear and violence before the ambulance finally arrived. Diagnosis and treatment of my bipolar disorder helped explain much, but in the end the very real issues of identity that had haunted me for most my life still existed. The difficult years that followed would see the end of a long marriage and, the beginning of a new authentic existence for me.

Anna was committed to death in her madness. In mine I found life.

I finished reading this book late this afternoon at a cafe where I frequently go to clear my mind and write. I could not put it down until I reached the final pages. As I stumbled out of the cafe into the biting cold and snow of this premature winter evening, I felt devastated and emotionally wrung out. As painful as it was to read, for those of us who live with manic depression or care for someone who does (and I do both), the third part of In a Strange Room is essential reading.

But consider yourself warned.

Haunted by the unanswerable

Under the bipolar microscope, The who am I? question becomes Which me is me?

The depressed world weary me? The hyper productive hypomanic me? The over the edge manic me? Or that nebulous normal, somewhat sponged and effectively medicated me?

Or possibly all or none of the above.

I don’t remember exactly when I first started to swing between up and down, enthusiastic and anxious, outgoing and withdrawn. I suspect I didn’t really begin to articulate the patterns until my early 20s but I am sure the tendencies were there much earlier.

I was an awkward kid, lonely and odd. My brothers had friends in a our rural area but there was no one my age. I was frightfully shy and unpopular at school. I lived for books and music.

And it was music that offered a hint of another world gleaned through the Sunday edition of the New York Times that arrived each week, belated and a little worse for wear. Although I existed in a place where 70s rock bands dominated the radio and occasionally passed through, New York City was home to The Ramones, Patti Smith, Lou Reed and so much more.

For someone so miserably out of step with others, confused by questions of identity and smart when smart was not something to be, New York seemed like mecca. It was, after all, the city my mother came from and where my parents met even if we had ended up in another country some 2000 miles to the west. I was not the only isolated kid hunting out obscure copies of Velvet Underground albums back in the late 1970s, but in my hometown at the time I sure felt like it.

My mother tried hard to provide me with extracurricular activities upon the advice of a guidance counsellor who had picked up on my round-peg-square-hole. I started with drama lessons and moved on to guitar lessons. Not a natural musician like my son, I needed all the lessons I could get. My teacher was patient, guiding me along from “Jingle Bells”, through a year or two of classical, but his heart was with blues. Not a good move. I was too self conscious to jam and too bored to play twelve bar blues runs ad infinitum. So one day he asked me to bring an album and play for him something I really wanted to learn.

I arrived the next week with The Velvet Underground and Nico under my arm and played my favourite tune, “All Tomorrow’s Parties”. My teacher’s face fell.

That’s just discordant, he told me. I can’t do anything with that.

It was my last lesson.

The timelessness of that album and its influence on decades of musicians has amazed me. Both of my children even fell in love with it in their own time. And in honour of Lou Reed’s death an ensemble of Canadian artists from rock starts to opera singers and our own musical astronaut performed a tribute concert.

This most amazing cover of “All Tomorrow’s Parties” takes me back to a space before my mental health started its slow unraveling and reweaving of my self identity to bring me here. When I listen to this I feel like I am beginning to come full circle. Much older, much wiser but still figuring out who I am.

Enjoy.

The right book at the right time: Just Like Someone Without Mental Illness Only More So

“There are no people anywhere who don’t have some mental illness. It all depends on where you set the bar and how hard you look. What is a myth is that we are mostly mentally well most of the time.”
– Mark Vonnegut, MD 

A couple of years ago I happened to hear an interview on CBC radio, as part of a series on mental illness. I was, at the time, of the mind that my own issues with mental illness were well managed. A present fact but a distant reality. However, something about this conversation stayed with me.

The guest was Mark Vonnegut, son of the late author Kurt Vonnegut Jr. Mark grew up in Cape Cod, in the years before his father’s writing brought fame and fortune. I listened with interest to his very personal account of how, despite diagnosis with a serious mental illness, he applied and was accepted to Harvard Medical School. He went on to become a respected pediatrician. After my breakdown this summer I debated returning to the the fine accounts, like An Unquiet Mind, that had originally guided me to an understanding of my newly acquired label. Then I remembered Mark’s memoir Just Like Someone Without a Mental Illness Only More So and within minutes it was on my Kindle. But I only decided that I really needed to read it this weekend as my symptoms and anxieties continue to persist.

7816284Mark writes in an honest and matter of fact way about the trail madness has left through his family, tracing a legacy of depression, suicide and alcoholism going back generations. His mother heard voices and received message from license plates but once the episode passed she was able to rationalize it. When Mark’s aunt and uncle died within a month of one another leaving four troubled orphans, his parents took them in even though they had neither the money nor the capacity to manage. His oddly prescient mother had been stockpiling supplies for their arrival in advance, as her helpful voices had advised.

Mark was a loner spending a lot of time fishing and playing imaginary games in the woods around his home in Cape Cod. The oldest child of the family he grew up poor in the fallout of the the Depression. His father was a ineffectual used car salesman for many years. Mark was 21 before his father became a rich and famous author seemingly overnight.

Caught up in the hippie movement of the 60s, Mark followed many of his peers to Canada to join a commune in BC. He lived off the land, contemplated the meaning of life and experimented with drugs. And that is where he first encountered his own voices. In 1971, at the age of 23 he experienced three major psychotic breaks that landed him behind the locked doors and plexiglass windows of a Vancouver hospital.

“Among the things I grew up thinking about mental illness was that it was caused by other people or society treating you badly.I also knew that once people were broken they didn’t usually get better and the ones least likely to get better were paranoid schizophrenics, which is what I seemed to be.”

Retrieved by his father, Mark returned to the US where, with ongoing treatment, he continued to recover. The voices faded to the background. He published a book about his experiences and articles advocating for an understanding of mental illness as a biochemical condition, in strong opposition to the RD Laing inspired philosophy that was popular at the time (and has recently resurfaced). Somewhere along the way he decided that he wanted to go to medical school himself. Against all odds, and with pathetic math and science marks, he applied to one school after another. Incredibly Harvard gave him a chance.

Over the years that followed, Mark dedicated himself to his studies and his internship. By this point he had recognized that he was bipolar (not a schizophrenic who responds to lithium as he had been told), but even then, the schedule of an intern is grueling. During these years he also married, bought a house and started a family. The model of normal and healthy he figured his mental health issues were history.

Then 14 years after his third psychotic break, several years into a successful pediatric practice, the voices returned to taunt him. The trigger was his realization that he was fueling his high stress schedule with a two pack a day smoking habit along with 5 or 6 beers, half a bottle of wine, a few shots of bourbon and a sleeping medication to round off the day! Hardly a surprise then that his effort to quit cold turkey should trigger a psychotic break.

Although he sensed things were falling apart he resisted seeking help in a hospital. Driven by an absolutely irrational fear planted in his head by his voices he attempted to throw himself through a third story window. The window smashed but he fell back into the room. Unfortunately he ended up in a straightjacket on a gurney in the hallway of the very hospital where he had completed his internship and taught a course.

Although my own manic resurgence following an extensive period of wellness was somewhat less dramatic than Mark Vonnegut’s, it is only a matter of degree. Yet in time he was able to return to work and it has now been more than 25 years since his last manic break. His ability to rebuild his life and career even in the face of abject humiliation is an inspiration. And I am fortunate that I have neither smoking or alcoholism to contend with. But his story stands as stark reminder that with bipolar you must take the medication that keeps you stable and monitor your own level of energy. If we become complacent we risk an unwanted replay, no matter how long we have been well.

This book was published in 2010, so It was not available when I was first coming to terms with my diagnosis. Perhaps if I had read it when I first heard the interview I might have been able to head off my more recent experience. But then again, a manic person is a slow learner because that high just feel so good. Especially in contrast to the draining and  despondent opposite end of the cycle.

I would recommend this memoir to anyone interested in mental illness, especially those who understand what it is like to experience psychosis. Its casual, relaxed style makes for an easy read but, as a practicing physician, Vonnegut has some depressing observations about the decline of health care in his own country. Most importantly though, he leaves those of us who live with mental illness with a sense that we can get better, we can stay better and if we fall, we can get up and move forward.

That is exactly what I need to remember right now.