Tag: stigma

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.

As we know, it’s all fun and games until somebody loses an eye

We have all heard this expression, probably said it ourselves if we are parents. Somehow, today, as we continue to simmer in the aftermath of the news of Robin William’s tragic suicide on Monday, this is the thought that keeps coming back to my mind. For those of us who live with the very harsh reality of a mood disorder his death holds a special poignancy. So does the inevitable, endless discussion that only unexpected celebrity death seems to be able to generate.

I am presently on sick leave after a severe manic episode and although I feel the worst of my own suicidal ideation has passed, the extreme mixed state I passed into as medical resources were amassed to put the brakes on my mania was the worst I have known to date. I relied heavily on the local Distress Centre at all hours of the day and night and as much as practical on my elderly mother and young adult children. Otherwise I was intentionally and completely ostracized by my employer and they have yet to follow up on my well being. Still I feel fortunate. Robin Williams and countless others are not so lucky.

In the wake of his death, everyone seems to be turning in to look at the darkness haunting so many seemingly outgoing, humorous, entertaining and outgoing individuals. It seems to me like the attention is so keenly focused on depression and addiction. But when he was working all out, brimming with manic energy the danger signals were just as evident. But we were too busy laughing, crying, and being entertained to be concerned. It’s all fun and games…

Another public media post mortem comment that disturbs me is the observation some people have made that he seemed to hide behind his characters, whether in his improvised comedy or the countless powerful and engaging individuals he portrayed on screen. From this they extrapolate  that it is as if he was hollow inside. As if only an individual so empty and devoid of being could ever be driven to take his or her own life! I am no expert on Robin Williams, I never met him, but I would not be surprised to learn that he was a deep and intensely private man. Probably shy and insecure too.

For many people who grow up with an inclination to conditions on the mood/anxiety disorder spectrum, there is often a lot of social isolation. I know from my own experience and that of my son, social interaction does not come naturally to some of us. The need to compensate can drive such people to the creative arts – drama, music, literature for example. Likewise such individuals can be drawn to academic pursuits where energy and intellectual drive can lead to striking success. After all, there can be long periods of essentially “normal” function, especially if one avoids the trap of alcohol or drugs as a means to cope.

From my own recent experience, it seems to me that our western society, rewards the mildly manic. Over the past nine years I worked at a small agency where I routinely held the largest and most complex caseloads and took on any extra assignments placed on my desk. I developed programs, trained staff. I was rarely sick and frequently had to struggle to squeeze my allotted vacation time in before year end. I loved my job.

At home I was a single parent with two teenagers, each with their own special needs. There was whole full time round of responsibilities that fell into play outside the office. Then about a year ago things at work got crazy. The Director was exhibiting signs of significant cognitive decline and it was left to myself and a junior staff to monitor and report on the increasingly toxic state at the office while the Board of Directors tried to decide what to do.

As senior management I took the brunt of the responsibility, workload and, ultimately, abuse. I became irritable, overwhelmed and distressed – big time manic. Although I had always been open about my bipolar diagnosis no one recognized the warning signs until a chance comment about how fast I was talking hit me like a ton of bricks. I immediately pulled myself out but by then it was too late. And it is all still seen as entirely my fault, my failure to control my behaviour.

I wasn’t funny, no one was laughing and I am the only one who lost an eye, figuratively speaking of course.

In the early weeks of my sick leave I remember thinking that if I took my life, maybe my employers would realize how truly sick I had become. Of course it would have only reinforced my madness and saved them the complication that as a disabled person I have human rights protection.

Loveable madness is remembered fondly. Margot Kidder digging garbage out of an alley is not. On a more horrific level, the nice ordinary person who seems to suddenly snap and takes the lives of family or strangers is not. However mental illness is a critical subject that we cannot afford to ignore.

After all, it’s all fun and games until somebody loses a life.

R.I.P Robin Williams
R.I.P Robin Williams

Negotiating tangled emotions

The aftermath of madness leaves its own measure of grief.  Because the manic end of the bipolar experience is by nature expansive, the episode is rarely one that occurs in isolation. At the very least, strange, anxious and pressured calls are made. Sometimes to strangers. Sometimes to those you know. Friends and families may observe the cracks as they start to spread. The first tremors may be intermittent. They can look like occasional or periodic moments of stress – the bad days anyone can have. When things start to spiral out of control I suspect it is already too late. For the person inside the experience, the pressure, the racing thoughts, the inability to sleep or find relief from the escalating crisis becomes a space in which all perspective is lost.

And generally there is damage.

At the most severe there can be serious physical harm, violence toward the self or others. More typically major manic episodes impact relationships, bank accounts or jobs, sometimes beyond repair. Yet in the middle of it all is a person who is very ill, who will need time to recover physically and emotionally for whom there is frequently very little understanding or sympathy. Especially when they are isolated.

14629062611_de5f459467_zAs I struggle to cope with the rotating cycles of sadness, embarrassment, anger and fear following my recent breakdown I am aware that because no one from my workplace has contacted me, no one has any idea how severely ill I have been. They just remember the last days of fractured functioning before I was finally able to get away from the office. Four weeks later I am exhausted, still unable to regulate my sleep and uncomfortable driving beyond my immediate neighbourhood. When I am deemed well enough to return to work my employers will be able to imagine this “illness” was all a convenient ruse and I have reason to believe it will be held against me. The nine years I worked there and the senior management position I held under increasingly toxic work conditions will mean nothing because it was always an environment in which your work was never acknowledged or appreciated. My mistake was to care enough to stay because I believed in the work we were doing.

The emotional roller coaster is the worst. It is interfering with the comfort and enjoyment I have always found in reading and photography. It finds me moaning and wallowing in self pity when I’m not trying to push grief and anger behind me. And my young adult kids and 80 year-old mother deserve a break from having to listen to it all.

And I would much rather be blogging about books and ideas, not the black heartache of depression.

Terrors, somewhere inside we all have them

I tend to think of myself as someone who treasures solitude, perhaps because my normal work world and home context, offer scant moments when I am ever truly alone. Now I suddenly find myself in a situation where I am recovering from a near breakdown, unable to travel far without being overcome by fatigue and vertigo and, so it seems, my work colleagues are under instruction to refrain from all contact with me.

Now if I was off work due to some tangible medical ailment, oh you know, a physical injury or illness or some other condition necessitating tests, scans and possible surgery, I would be able to expect calls, cards, hospital visits. Instead I am in a virtual isolation chamber. I have a mental illness and suddenly the years of highly productive contributions I have provided to my employers seem to have been rendered null and void. A crushing ball of loneliness to which I am entirely unaccustomed sits in the pit of my stomach. Would anyone even notice if I failed to return save for the mass of paper I left behind on my desk?

One might wonder how the workmates of the unnamed narrator of Seven Terrors made sense of his failure to return to the office when, after the dissolution of his marriage, he took to his bed and refused to emerge from the confines of his bedroom for nine long months. That is exactly where this dark gothic tale by the Bosnian author Selvedin Avdic begins.seventerrorsfrontcover_50acc7efa1d7c_250x800r

Long listed for the brilliant Impac Dublin Award for 2014, I read this book a few months back but I find its haunting mystery and curious endnotes continue to resonate with my present frame of mind. Translated by Coral Petkovich and published by Istros Books in 2012 (re-released in 2018 with an introduction by Nicholas Lezard), it is the sudden visit from the daughter of a former colleague that drags our apparent hero from his self imposed exile. She beseeches him to help her locate her father who has been missing for years and intrigued, perhaps more by the young lady than any curiousity about his friend’s fate, he agrees. Thus he embarks on a most dingy and disorienting detective adventure.

Set in 2005, the war in Bosnia a decade earlier is a constant presence throughout the book. Although few events are recounted directly; the memories, mythologies and  human losses linger in the bitter winter wind, seep through cracks in the plaster and creep across the floorboards. With a clear nod to Borges, Kafka and others this dark tale is an entirely contemporary fantasy. Yet as the investigations turn to the missing journalist’s interest in coal miners, Bosnian mythology begins to play a strange role and our narrator’s sanity (already questionable one might argue from his bedsit starting point) becomes increasingly  ungrounded; even as he tries to make sense of himself and the truth behind the dissolution of his marriage.

It is strange how magic, reality, fantasy and fact can mingle in literature – and for this purpose I am excluding fiction that fits explicitly into fantasy and horror genres where such mutability is a given – but capital “L” Literature, which being a bit of a bookish geek is my typical but not exclusive, terrain. Yet in real life, that life we are forced to venture into outside the covers of a book, there seems to be some caveat on TRUTH as if that was even an objective possibility. And what is crazy anyway? When I work with a survivor of brain injury I can sense the difference between psychosis and confabulation and the inability to lay down new episodic memories. But if, under exceptional professional stress, I became agitated, overworked and frustrated is my sanity at stake? I heard no voices, had no visions but I sure was moody and irritated.

I should think that my fictional Bosnian friend burying himself in his bedsheets for nine months was in worse shape than I but as a character he is a fascinating narrator to spend time with. Or so I thought. And obviously enough people agreed to nominate Seven Terrors for the Impac Dublin Award which draws its nominations from the selections of a wide range of international libraries.

As I agonize over my eventual return to the workplace following this recent breakdown I find myself returning to the most fascinating series of footnotes and endnotes that make this Bosnian novelist’s slim volume so extraordinary. Among those notes is an actual list of seven terrors and, for those of us who are inclined to anxiety, blank pages so that you can helpfully add some more of your own. I will leave you with his seventh:

7. Fear of loneliness and darkness
Better to write and describe it like this – fear of                                                           loneliness or darkness. It’s all the same, they both devour.

Turn on the light and read this book.

What lies ahead?

Along the forest trailI took this photo almost a month ago. This trail near my home runs up and down along a steep embankment above a major river running through the large modern city I call home. It exists as an oasis of mountain magic lingering east of the Rocky Mountains. Today I could not possibly negotiate my way over the ubiquitous tangles of roots that emerge without warning on such forested trails. Although my health improves every day, I am stunned by how devastating the process of recovering from the brink of a full manic break has been on my ability maintain any degree of physical equilibrium. At the worst I was toppling over at a moment’s notice and hobbling along after my 24 year-old son as if I was in my 80s or 90s. This morning I actually managed a 10 block walk to Starbucks on my own. I no longer lose my balance when I turn my head and could even stoop to photograph a few renegade alley flowers along the way. Maybe I will even make serious headway in the novel I was reading before I crashed a few weeks ago.

But the question then begins to take on a more critical long turn.

What lies ahead?

And is this a path I am prepared to commit to knowing that the dysfunctional elements that ultimately contributed to my break down are deeply embedded into the structure of the work environment that I am, at this time, expected to return?

If I hated my job, the answer would be simple. But for nine years I loved my work, looked forward to the challenge, cared deeply for the cause, the clients, my co-workers and community colleagues. However, sometimes hard work and achievements mean little if the last impression you leave is of someone who is over tired, over worked and processing at lightening speed. You are assumed to be crazy, not ill. And labels once granted still await even once you cross the bridge to recovery.

Roughed up ghost

I started this blog with the idea that it would be a medium for some idle musings, some reflections on some of the random topics that attract my attention. Maybe the odd book review when something really grabbed me and deserved a little verbal leg up.

Then, not even a month after my modest entry into the wold of blogging, life has inserted its own stubborn editorial prerogative. I have crashed, head on, into a brick wall.

JMS 2012

The wall you see here is a memorial remnant to mark the location where a major hospital that was deemed redundant was collapsed in a most spectacular implosion. The government orchestrated the event in a zest to balance the books with total disregard for the awkward fact that that people do get sick. I took this photograph two years ago simply as an artistic statement. Then last week I allowed an illness I have long lived with to bring me to the brink of hospitalization.

I have bipolar disorder. It’s not a secret and I rarely give it a second thought. Diagnosed after a most spectacular manic break in my mid-30s I responded well to medication and never looked back. To appreciate the genesis of this recent setback one has to look back a good year and a half. For nine years I have worked with small not-for-profit agency serving adults with brain injuries. I have loved my job. We help people accessing benefits, advocate for services, and adjust to the sudden impact that severe injury brings to the survivor and their families and friends.

But lately there had been something out of sorts. The Executive Director began forgetting to issue invoices and pay bills. His behaviour became increasingly erratic and unpredictable. As the senior management staff member my workload multiplied as I sought to cover his shortcomings and meanwhile, on behalf of the staff, I had to try to encourage the Board of Directors to issue at least some kind of thorough review. Instead they paid him out, congratulated themselves on a job well done and left it to myself and another key staff to fill in the gaps. With such an increasingly unmanageable forest of papers and emails threatening to bury me alive I brought work home and worked through the evenings and weekends. Sleep all but evaporated and soon I was, well, running on high octane. And not in a good way.

The realization that I was on the doorstop of mania was a shock when I discovered my empty pill case. I had been stable for 18 years. Under medical advice I have requested stress leave but it has become clear that the mental health stigma is alive and well. Of course it doesn’t help that as my mood escalated my behaviour began to appear increasingly bizarre. I can’t take that back, but such is the illness. Consequently I have been referred to as unstable, unreliable, incompetent. It is unlikely that a return will be feasible.

As the longest serving staff member, my heart and soul were bound to the vision of this agency. At this moment, my ghost is not only roughed up, but fractured. And I am not even a strong believer in a soul but there is some soul-shaped hole in my heart right now.

Will mental illness ever be understood as an illness of the body like any other?