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.

The unbearable invisibility of being mentally ill

For years I worked with brain injury. Depending upon the cause, damage to the brain can mark the survivor with more or less obvious physical impairments. But frequently the greatest impact leaves no obvious trace on the outside. The injury takes its most significant toll on memory, behaviour and fatigue.

Not unlike mental illness.

Copyright JM Schreiber 2014
Copyright JM Schreiber 2014

For many who have never had direct experience of mental illness the tendency is to imagine the extreme – psychotic, eccentric, suicidal behaviour. But the reality is so much more complicated, so much more subtle and, on the outside it is often so apparently normal. Especially for those of us who live with anxiety and mood disorders.

We look like other people. We have lives, families, jobs when we are well enough. But sometimes those things are tenuous. And yet there is this inability to step away from the condition and observe it, no CAT scans or MRIs to chart the progress of the illness or mark remission.

Copyright JM Schreiber 2014
Copyright JM Schreiber 2014

Recovery is a slippery concept. It depends so much on how we feel.

And the deeper we look the harder it is to know exactly how we feel.

Aiming to see the bright side

For someone who recognizes the swings of bipolar disorder reaching back into late adolescence or early adulthood, I have had precious little acquaintance with depression. Unfortunately I remember it best as a stepping stone on the way to hypomania and, at worst, the door into a hallway leading up to eventual mania.

Now, on the heels of a drawn out period of manic and mixed state agitation I am settled into a pit of anxious depression. Bone weary I find it hard to sleep. With long days to fill I find it hard to focus. Plans and decisions loom on the horizon but I find it hard to concentrate. I make an effort to go out somewhere everyday but before long I feel nauseated and eager to get home.  And now my psychiatrist is unavailable so my faithful doctor has set about looking for someone else to help me assess the effectiveness of the medication I have relied on for so many years, just in case it is time for a change.

And the thought of a medication change is about as comforting as the thought of having the carpet pulled out from under me without warning.

Copyright JM Schreiber 2014  No sign of last week's storm
Copyright JM Schreiber 2014
No sign of last week’s storm

Today I made my own small effort to take back some control. It was a glorious warm September day, with only the piles of branches that litter the streets, sidewalks and parks giving testament to last week’s unexpected snowstorm. I made my way downtown to the offices of Wordfest, our annual literary festival, to see if they might still have a need for any volunteers.

One advantage of my current inability to work is that for the first time in years I am free to take part in this major festival. Typically it coincided with the busiest time of year at my former job, so volunteering or attending events was impossible. Now I am committed to helping out with two events on the 14th of October. I was cautious to warn them that my energy reserves are uncharacteristically  low at the moment but it is my sincere hope that in a month there will be a little more juice flowing. I can’t quite picture it getting worse.

In the meantime I have a plenty of reading to occupy my time in advance of the special visiting author events I hope to attend over the course of the festival. The support of my doctor and therapist is vital, I know, but Wordfest gives me a tangible goal to look forward to – an essential light at the end of the tunnel when everything else seems so uncertain.

Thoughts about redemption

Copyright JM Schreiber 2012
Copyright JM Schreiber 2012

“Emancipate yourselves from mental slavery;
None but ourselves can free our minds.
Have no fear for atomic energy,
‘Cause none of them can stop the time.
How long shall they kill our prophets,
While we stand aside and look? Ooh!
Some say it’s just a part of it:
We’ve got to fulfill the book.

Won’t you help to sing
These songs of freedom? –
‘Cause all I ever have:
Redemption songs.”

This song by the late Bob Marley has echoed in my mind frequently over the past month or so. Written after the diagnosis of cancer that would ultimately claim his life, it is thought to speak to his personal reflections on mortality. My own longing for redemption relates directly back to my inability to resolve the circumstances which led up to the extraordinarily manic behaviour that marked my final days in the office. And my inability to let it go.

What is redemption?

Disregarding the financial and transaction contexts by which the term is used, redemption is typically understood as:
n.
1. an act of redeeming or the state of being redeemed.
2. deliverance; rescue.
3. deliverance from sin.
4. atonement for guilt.

Looking at the news over the past few weeks, there are some very public examples of behaviour that can not be easily excused. The videotape of NFL star Ray Rice punching and dragging his unconscious fiancee from an elevator, the resignation of a Vancouver CEO caught on video kicking and abusing a puppy, and most recently another NFL player accused of excessively brutal corporal punishment against his own children are just the latest in a litany of public figures behaving badly. Unfortunately, they might have been met  with relatively minor reprimands had there not been videotapes or pictures and an element of public shaming.

How many sports heroes, businessmen, politicians and celebrities have been brought down by grossly inappropriate, violent and even illegal actions only to eventually find redemption in the public eye? Many, have found such redemption more than once.

But what if your only “sin” is to have become ill due to a mental health disorder, where does redemption come from? I don’t even know what I want anymore. I have tried to apologize for my behaviour which I know was highly agitated and unpleasant, but there is no way to explain how trapped I was within that state,how miserable and unable to even know what was happening to me until a lot of interpersonal damage was done. Because no one from work will communicate with me I cannot have that conversation, no one can appreciate the degree to which I am still struggling and I can’t stop beating myself up inside for not recognizing the warning signs months before mania was in full swing.

If this was as straight forward as having lost a job, as much as there is grief and loss, I could at least busy myself with looking for a new job. But I am still technically connected to my employer and the question of return is unspoken but not denied. Meanwhile I am not able to function well enough to look for another option or contemplate a return. I am also increasingly aware that everything I loved about the job I had is exactly what, over time, made me ill.

The fact is, I am in limbo. I still have a lot of healing ahead. So why is the desire for redemption so important? Or is this really more the need to be heard and understood?

Isn’t that what we all seek in the end?

Lessons from Mother Nature are not always the ones you expect

Maybe it’s the unusually early snow. Tree branches still rich with green foliage weighted to the breaking point under heavy wet snow are decidedly out of place so early in September. If it warms up we may squeeze a little fall out of the year after all. If we get a killing frost the leaves will turn leathery and cling to the trees until spring.

Copyright JM Schreiber 2014  (yes these shots were taken today)
Copyright JM Schreiber 2014
(yes these shots were taken today)

An omen perhaps?

Is it late summer or early winter?

Like trying to define the weather, it can be difficult for me to clearly pin a label on my emotional state. A stable, well medicated state is actually one of relative distance from what I really feel. Blunted at either end of the normal ups and downs. I am not certain if that is a natural or artificial state. It is probably more realistic to call it functional.

Manic? Well, manic is really only recognizable as it recedes. Think of the way that you can become accustomed to a certain level of physical pain and not realize just how severe it is until the painkiller kicks in. But there is no instant relief for a significant manic episode. Manic gradually disappears in the rear view mirror as I creep along and then, just as the road ahead seems to become clear, I hit depression. Or this anxious emptiness that I feel lately.

Copyright JM Schreiber 2014
Copyright JM Schreiber 2014

Like today.

The streets are littered with branches that could not handle the weight of the snow. The power has been off across the western side of the city for hours. As crews manage to restore power to one section, melting snow frees branches that bounce back and knock the wires out all over again. The silence and reduced light has left me alone with my thoughts for much of the day.

There is, however, an important lesson in unexpected situations like this. You have no choice but to ride it out, stay safe and wait until the storm has passed. Only then can you assess the damage, clean up and move forward. After all, we are supposed to be back up to summer temperatures by the weekend.

My own spirits might not lift quite so quickly, but I know from past experience that they will.

With time.

Capturing madness on the page

I started this blog in a fit of manic energy not realizing how very close I was to running over the edge into full blown madness. And now I find myself writing in and around the experience as best I can, unpacking and worrying myself into the future with a level of anxiety that seems to greet me refreshed every morning before I even crawl out of bed.

Taken in the aftermath of major flooding last year this looks like how I feel sometimes... Copyright JM Schreiber 2013
Taken in the aftermath of major flooding last year this looks like how I feel sometimes…
Copyright JM Schreiber 2013

With my original diagnosis I read all the available materials and although it was pre-internet (imagine!) I spent a lot of time at the library. This time around I find myself in world where so many fellow travelers on the road in and out of sanity are busy scribbling their way along. I have been and will always be selective in what I chose to share about myself with others. Great for maintaining privacy, not so great for making new friends. So I struggle every day with how or what to add to the dialogue.

I think I am personally drawn to creative expressions… photography, poetry and writing but am not sure where to start. I suspect madness, sanity and that huge area in between is best met sideways. So no memoirs for me. Photography is good outlet but I lack the discipline to take it to the next level. I would like to capture that moment when reality and one’s experience of reality begin to part ways. It is such a subtle process with manic depression the way I experience it and I imagine I am not alone in this regard. To those outside, unless they are highly attuned to changes in your patterns of behaviour, the transition can be unnoticed for a time.

And then before you know it you are picking up the pieces or retreating from the world or both.

To date, the finest literary account of slowly growing madness, that I have read, is William Golding’s The Spire. This novel imagines the construction of a 404 foot spire atop a medieval cathedral (inspired by Salisbury Cathedral in England) and is narrated from within the mind of Dean Jocelin. The dean is a man who has attained his position by curious family connection rather than earning it on a solid foundation of faith. As he envisions and directs the construction of the spire, tuberculosis in his spine advances to the point of driving him into a psychotic state. At first he interprets the sensation caused by his infection as angels at his back, sure evidence of God’s blessings. However as his pain and madness grows he becomes increasingly erratic, unstable and irrational. It drives him to conflicts with the master builder, sexual obsessions with a woman, paranoia, jealousy and possibly murder.

William Golding - The SpireReading with an online reading group added to the richness of the experience of this novel, but for me personally it captured so vividly the sensation of gradually and fully losing grip on reality that I had during my first severe manic episode. By the final moments before the ambulance arrived to whisk me away I was no longer able to distinguish between what I had interpreted as a mental breakdown that I could handle and the creeping fear that the Devil was tormenting me. It was a horrifying moment.

For poor Dean Jocelin because he is not only mad but dying of tuberculosis, his last days and hours are vivid mental and physical torment. It is up to the reader to decide if his soul finds any peace at the end.

Luckily my more recent manic episode did not end with as much drama as the first because someone finally commented on how fast I was talking and I had the shocking realization that I was sick. But the damage was already done all the same. I just wish I could help those who experienced my behaviour understand but I am not certain they wish to listen. And honestly, can I be a more reliable narrator of my own manic experiences than The Spire‘s mad dean?

Draw me a map to my self

Yesterday I took a small road trip with my son out to visit my parents. It’s about a two hour drive each way and this is the first time I felt that I had sufficient stamina and concentration to manage it since my breakdown in June. The countryside is beautiful but the journey did not really offer me more than time to sit and fret behind the steering wheel.  I thought about how I used to need a road map to navigate the back highways when my 86 year-old father’s ongoing retreat from civilization first drew them out there a few years back. I no longer need a map and know the route well.

Copyright JM Schreiber 2013
Copyright JM Schreiber 2013

I could, however, use a personal map or trail of bread crumbs to follow back to make sense of the past year or two of my life.  A mood disorder can wreak havoc on one’s internal compass. In the hazy debris of an extended period of hypomanic energy sliding into manic, I am finding it impossible to make sense of where I was or where I go from here.

At a deeper, more fundamental sense I have lost faith in myself. Or rather my ability to make sense of my self.

It is likely that this is the affect of depression. It’s hard for me to know because I have rarely ever experienced the sort of black dog depression that many others describe. I tend toward anxiety and a bone weariness that weighs me down, but I do not crawl into bed and pull the covers up. I don’t sleep well, in fact I tend to insomnia. But I don’t recall experiencing the all pervasive lack of physical energy that haunts me now. I find it hard to remember how I ever managed to accomplish all of the projects, personal and professional, that I tackled during the many years of relative stability I experienced over the past ten to fifteen years.

At the moment, the fact that’s really eating away at me is that the last impression I left at work was of a manager who was increasingly high strung and finally quite stressed and obnoxiously concerned that he alone had the skills and perspective to resolve the challenges facing the agency. The manic Mr Hyde side. But how long was he showing his face? And now that I am living with a shy, anxious shadow of my Dr Jekyll self (assuming I even have one) I wish I had GPS system of some kind to help me retrace my steps.

A good therapist would help, and I do have one, but at $180/hour I won’t be seeing her much and if I am going to spend that much I would rather wait until I have figured out where I have been so she can help me figure out where I go from here.

Or maybe it’s better to accept what cannot be changed and look forward instead…