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Wednesday, July 13, 2011

The Gift of Not Being 'Normal'

I knew I was hooked and would be up reading all night when I read this line:
"The biggest gift of being unambiguously mentally ill is the time I've saved myself trying to be normal".
Earlier that afternoon, in the check out line at the Giant, I heard two young grocery clerks - obviously on summer break from college - talking about the book, "Just Like Someone Without Mental Illness Only More So: A Memoir" by Mark Vonnegut.

"Excuse me," I rudely interrupted.

Well, I don't know that I was rude, exactly. I guess I've never really understood the proper etiquette of the grocery store. I mean, clerks are supposed to answer your questions, right? It's just that this question wasn't about the price of a few vine-grown tomatoes. So, shoot me.

"Is that Vonnegut as in Kurt Vonnegut? The author of 'Slaughterhouse Five'?" I asked as if I were asking the Sku number on a can of soup that wouldn't scan.

They seemed as thrilled with my query as I was in hearing people in a grocery store on Lower Slower Delaware mention the name "Vonnegut" and "mental illness" in the same sentence without snickering or mispronouncing the name.

"Yes," one of them exclaimed a little too excitedly and loudly for a grocery store (Well, then again, who knows what's normal for a grocery store?). "Did you READ 'Slaughterhouse Five' or did you SEE the movie?"

It was a test. I knew it was a test. "Both," I answered honestly.

Apparently, I passed the test. I had said the secret word and was immediately allowed access to their review of the book. Based on what I heard, I couldn't wait to get home and order it on my Kindle - which, if I'm not careful, will soon bankrupt my budget.

That's okay. I fully expect my obituary to read, at least in part, "She died poor but well read."

Let me say, straight away, that this is a quirky book. The style clearly flows from the beautiful mind of an incredible soul that has been visited four times by madness and slightly clouded by a daily dose of lithium. The thoughts are sometimes disjointed but you can hear the theme.

It's a bit like reading a jazz improvisation in words. He'll go off on a story and then back to the theme, which I think is summed up well in the sentence that first caught my eye.

Here's one of my favorite examples:
"The thing I've always loved about my troubled paternal grandmother - who I imagine as not yet troubled back then - was that when informed by her husband that they were broke she said, 'Okay. Let's spend the summer in Europe.'

And they did."
Therein follows a paragraph about how, at some point in his childhood, his father (Kurt) gave his three children code names.

Not terms of endearment. No, no. These were code names.

Kurt was Boraseesee. His mother was Mullerstay. He was Kindo. Vonnegut writes:
"If we were ever trapped or captured and wanted to let one another know that it was really us, we could use these names. It was a long shot, but when I was locked up (read: committed to a psychiatric hospital), Kindo tried hard as hell to get word out to Boraseesee and Mullerstay.

We all want to believe that we're in a sheltered workshop with grown-ups nearby."
You know. Just like everyone else.

He doesn't spend too much time talking about his father, except where it is appropriate to understand the context of his life.  I was sort of glad about that, actually.

"Craziness also runs in the family," he writes. His mother's family warned her about marrying his father because of the mental illness in the family. His father's family offered the same warning about his mother's family.

Of his family, Vonnegut writes,
"If I'd been raised by wolves, I would have known a little less, but not much less, about how normal people did things."
Vonnegut attended Swarthmore in the '60s and majored in religion with the idea of going to divinity school where he would be "a comforter of the sick and disadvantaged but mostly a really good professional arguer who argued against the war and materialism."

In 1971, Vonnegut had a psychotic break that landed him in a psychiatric hospital in Vancouver. Two more breaks came in rapid succession. He was diagnosed at first with schizophrenia but says that, after the DSM (Diagnositic and Statistical Manual) changed in 1984, he now knows that it was more bi-polar disorder.

While he has obvious respect for the psychiatric community, Vonnegut also acknowledges that most of the diagnostic tools are the equivalent of a medical crap shoot.  He writes:
In the seventies I was in so in love with the medical model I almost thought I had invented it. "No shame. No blame." I was thrilled to not have my health be dependent on the sanity of society or the wellness of those around me. I was magnanimous about not wanting to credit insight or hard work or circumstances like the kindness of others. Now, the medical model has morphed into "Shut up and take your pills." What passes for care is medication, medication, and more medication, the purpose of which is only incidentally and occasionally to help the patient get a life.

Much of mental illness is genetic, but I’m now quite sure there are people with more or less the same genetics I have who never go crazy and others who never get well. As a kid who wrote a little and painted a little and played a little music, I certainly didn’t want my mental health riding on anything as flimsy as my creative abilities but, among other things, I’ve come to see that a willingness to write, paint and play music is more than a little important to progress and just trying to keep my feet under me.
There are a few lovely passages about how the creative arts provide an avenue of healing with which I really resonated.

I mean, there are times when I "hear" a poem or something I want to write about. I have these long conversations with the voice in my head about the different sides of the various issues.

And then, sometimes when I'm at my laptop, I look up at the screen and there are all these words in front of me and I think, "Huh! How did they get there?" And then I read the words on the screen and I say, sometimes out loud with no one else in the room, "Damn! That's good. Did I write that?"

No one answers of course, but it doesn't matter. No one heard me, either.

Besides, I can see smiles on the voices in my head.

Am I crazy? Perhaps. But, I would not be convicted by a jury of my peers.

I remember listening to an interview on NPR with a poet who said that most of her poetry comes to her when she's out working in her garden. She said one day she saw a poem coming at her and she had to chase it around the garden until it finally found its way into her home and onto her kitchen table where she could write it down.

If you've never written a poem or a song or an essay, or painted an image on canvass or sketched it on a pad, or sculpted something from clay, or created a meal without a cook book, or turned an empty space in your house into the sanctuary that is your bedroom or study or den, you probably don't know what I'm talking about.

Vonnegut writes:
"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 well most of the time."
It reminded me of that quote which I think is attributed to Winston Churchill who observed that most of the work that is being done in the world each day is done by people who do not feel very well.

Vonnegut recovered from his first three successive psychotic breaks and applied to medical school. He applied to ten. Round number, he says. Only one accepted him. That would have been Harvard.

He writes: "It is possible the committee members of the day, back then, were distracted by the question of whether or not I was schizophrenic and overlooked my grades."

He wrote his first book "The Eden Express" was published in 1975, the first year Vonnegut started medical school. That book was credited with helping many people understand mental illness at a time when the stigma attached to mental illness was even greater than it is today.

Vonnegut threw himself into his studies and became a successful pediatrician. He married and has three sons. Unfortunately, he had a fourth psychotic break 14 years after the last episodes.

He was taken to the same hospital where he had once trained and where he continued to work. Because there was no room immediately available, he had to wait in the hallway where strangers stared at him and his colleagues walked hurriedly past him.

That was the same month that Boston Magazine named him the best pediatrician in the Boston area.

Vonnegut writes of that experience with characteristic wit: "It's probably possible to gain humility by means other than repeated humiliation, but repeated humiliation works very well."

It has been twenty five years since that last episode. He remains a successful pediatrician in the Boston area with a wife and three grown sons. He's now 62 years old. Of his first book, he says,
"I’m grateful to the gritty clench-jawed kid who wrote The Eden Express, I think it’s an excellent book, but I’m glad I’m not him anymore.

It was the feeling that good things had happened to me in spite of myself, that I had a rich life that showed itself in my house and how I practiced pediatrics and how we lived as a family that made me want to write Just Like Someone Without Mental Illness Only More So."
I love this book for lots of reasons, none the least of which is that the mentally ill live and walk among us every day - in the grocery store, in schools and universities, in clinics and hospitals, among our families and friends.

Vonnegut writes:
"What so-called normal people are doing when they define diseases like manic-depressive or schizophrenia is reassuring themselves that they don't have a thought disorder or affective disorder, that their thoughts and feelings make perfect sense."
He's absolutely right. I suspect that the reason so many people - and pastors - are uncomfortable being around those with serious mental disorders is that they see the possibilities in themselves.

Indeed, those of us who are involved in congregational leadership know - or can pretty easily surmise - all the stories, which closets hide the family skeletons, and understand which family members hold the bag of family garbage so everyone else can feel good about themselves.

Problem is, most of the members of congregations suspect that we know this truth, even though they haven't told us. Some ascribe us with some kind of spiritual clairvoyance but the truth is that some of us see the world a little differently because we know that "normal" is a crock.

Oh, and we understand Vonnegut's continuing belief in his early aspirations to save the world. Vonnegut writes:
"Of course I'm trying to save the world. What else would a bipolar manic depressive hippie with a BA in religion practicing primary-care pediatrics be up to?"
I'm right there with you, Mark.

One soul, one essay, one sermon, one Eucharist, one conversation in a grocery store, one rescued dog at a time.

It begins when you save yourself from trying to be 'normal'.


Anonymous said...

I could use your prayers and suggestions for books to read. I've been off depression medication since may 2011; after steady daily medication use since may 2005. I stopped my meds because it was wearing off at 3am and leaving me with big nightmares of horror to start my day. Now I am just steeping in depression every day as my job hurts more and pays less and my last couple decades of life look to be very bleak and painful. I was lucky I guess to not be too dysfunctional my early adult years as I had a career and status in my community. However, looking for more I left those comforts to reach higher artistically and spiritually. I had some success as a visual artist but it was not finacially sustainable. Along the way I knew that spiritual growth would not be as I imagined it. This has become true for me, painfully so. I did not become a compassionate healer or selfless servant to humanity.

Now I am just in pain praying without hope; "Cleanse the thoughts of my mind with the your heart of Holiness dear Jesus my savior".

Deb in Madison

Elizabeth Kaeton said...

Deb - Thank you so much for writing.

Prayers? You got 'em.

Books? Well, I'm hoping some of the readers of this blog will chime in and offer suggestions, but the one I learned a great deal from was "Listening to Prozac". The author makes much the same point that Vonnegut does - that much of what passes for medical psychiatric care is, "Here, take these pills and shut up."

I want to note that Vonnegut still takes lithium and other meds daily. He is also carefully monitored but knows there are no guarantees. He only has the iron will not to be incapacitated by what he understands is a chronic condition.

You will be in my prayers, Deb. I wish I had more to offer, but it's all I've got and I give it to you unconditionally and with a heart filled with compassion for your pain.

RevMama said...

Elizabeth, you wouldn't be convicted by a jury of your peers because they are as crazy as you are. Crazy in a good way: refusing to settle for the status quo, the ability to look at the same old things and see something wonderfully new, and the ability to laugh at the world and yourself. That kind of craziness is blessed, and often hard-won. Craziness and creativity live next door to each other.

I understand the poet who had to chase a poem around her garden, I chase sermons like that. Sometimes I catch them, sometimes they catch me, and sometimes they get away. Adult ADD means that I have lots of ideas running around my head like mice, but I struggle to focus enough to bring them to fruition.

Deb, you are in my prayers.

I've got to read this book.

Elizabeth Kaeton said...

Thanks for coming by, RevMama. I don't have ADD but I was once told I have some "learning disabilities". I've also been told I'm an over achiever. I knew that.

Anyway, I am in great company with the folks who come by this blog. We ain't normal. Not one of us. And we like it just that way, thank you very much. Life is so much more fun that way.

MarkBrunson said...

I spent a great deal of my life being profoundly frustrated - clinical depression didn't answer all the difficulties I was having, nor did a diagnosis of bipolar - and, then, I was told that I was in the autistic spectrum, Asperger's, likely, though it is always difficult to get the diagnosis exactly.

Just knowing is a profound relief - it's not that I'm just not doing something right, or lazy or . . . whatever, it's just how I'm made and I can live with that, rather than fighting it. I've become quite happy about my being "different" as I also see things differently, relate differently, and don't have to rely just on myself and hiding my "defective" worldview from others, but share mine as they share theirs.

It's a profound gift.

Joan of Quark said...

Fascinating story. I experience a lot of churches and churchpeople who are well-meaning but scared and uninformed about anyone who has a heavy medical history and/or is coming out of a background of trauma, or both - even though officially we are all about going after the stray and marginalised.

My background is such that being raised by wolves instead would have been a vast improvement.

Elizabeth Kaeton said...

Mark - I couldn't agree more. Just knowing what it is that makes you 'different' is a relief. You have the opportunity, then, to embrace it and live with it and celebrate your difference. It takes time. It's not an easy journey to get there. You do waste lots of time in worry about not being normal. And then, you arrive at the place where you understand that not being normal is, as you say, a profound gift.

Thanks for writing, Mark. Always good to hear from you.

Elizabeth Kaeton said...

JofQ - I used to joke that I was convinced I had been kidnapped out of the nursery by my parents. Except, it wasn't a joke. I really believed it for a number of years. And then I just realized that I was different. 'Not normal' - at least, not by my parents standards. And then I realized that that was good. It was very good.

MadPriest said...

I love the feeling that my illness gives me of being able to think what I like, tell the truth as I see it and be myself. Unfortunately I think this may be what other people fear the most and it is this that has led to my unemployment.

Elizabeth Kaeton said...

Jonathan, the most painful irony of all is that the church, which is supposed to be a haven for 'outcasts' has a very low tolerance for those whom Jesus called "the anawim" - especially among her leaders. I hope you are inspired to read this book. It's wonderfully affirming and inspiring. BTW, I recently met the Bishop of Montana who spent several months in a psychiatric hospital BEFORE he was elected and consecrated bishop. You don't have to be crazy to be in the church, but it helps. A lot.

MadPriest said...

I don't mean this to sound boastful, it is just a fact. But I've achieved far more for the Church and bought many, many more people into its fold since I went mad than I ever did before. To be honest, I was too scared to be of any real usefulness prior to my illness.

Elizabeth Kaeton said...

I not only understand, Jonathan, I couldn't agree more. Something happens when we embrace who we are - warts and all - that allows our authenticity to shine through. That light is the best evangelism "tool", attracting people who are hungry for that in themselves and others. It's also why the institutional church bureaucracy is so frightened of it. Mediocrity is always more comforting than taking the risk of excellence.

textjunkie said...

Thanks for posting that! I should read that book--as someone (PhD, not MD) who works with clinicians and folks with schizophrenia, I remembered Vonnegut being held up as someone who actually "recovered" from schizophrenia, but he was the only one I'd ever heard of. I had wondered about that, why it didn't happen for more people--it makes much more sense that what he had was bipolar disorder.

But the psychiatrists--at least the ones I know--are as frustrated by the current treatments as anyone. They are in the job because they want to help, and they know they are working with completely inadequate tools. Taking a sledgehammer to a snowflake, is the metaphor I keep thinking of for what antipsychotic drugs do!! But dang, it's better than the lobotomies, leucotomies, and cold-water baths of 40-50 years ago. It's just depressingly still not a good solution, not even close. (Which is why we do research!! Though less of it these days, the way Congress is cutting NIH's budget...)

But there's a real difference between chasing a poem around the yard, having invisible playmates, talking to your computer--and having your mother's voice in the back of your head constantly whispering she's going to kill you, or knowing there's a demon on your back feeling his claws in your brain, forcing you to try to rip your eyes out. I'm sure you've seen stuff like that in various chaplaincy positions--we see it all the time in clinics. Please don't underestimate psychosis!! There are forms of it which are NOT just ramped up normal response, "like normal but more so", and I fear that people who are really suffering could be patronized or the severity of their situation downplayed, with that sort of thinking.

Unknown said...

I want to respond to Deb based on my experience--your mileage may vary.

I've been on antidepressants continuously for about thirty years (I'm 55.) I have lost track of how many times I've been hospitalized. I spent about a third of the last year in two separate hospitalizations, including a suicide attempt. (While I was comatose in the ICU following the latter, the rector of the church we were then attending asked my wife how much longer she was going to put up with this. Isn't that special?)

I have been on lots and lots of different combinations of medications. I tell you that only to encourage you not to give up on meds if they could make things better, since it sounds as though they're not great right now. Last year, while I was in the hospital, I was started on electroconvulsive therapy (ECT) along with an antidepressant that is delivered via a skin patch and a mood stabilizer. I am at least well enough that most days I can get out of bed, go out and interact with other human beings. That's better than where I was.

To not coin a phrase, it gets better. It might not get wonderful, but I'm sure it can be better than what you are describing now. I would be happy to say more or to communicate with you off-blog if I can help somehow.

Elizabeth Kaeton said...

Thank you, textjunkie, for the reassurance that psychologists and psychiatrists are also frustrated with the current medical model of treatment. Now, how do we go about changing it?

You know, I hate the term "health care reform". It's really "health insurance" that needs the "reform". I fear everything is being driven by people who have barely finished high school who are sitting on the phones with drug protocols in front of them, making life and death and financial life and death decisions for us all.

Your cautionary note about psychosis is well made and well received.

Elizabeth Kaeton said...

mdharnois - Thank you and bless you for writing to Deb here. Deb, I hope you have a chance to read this amazing note of painful hope. I happen to know this man and I can tell you that a kinder, gentler, more intelligent, spiritual soul you will not find walking the face of this earth. Thank you for your compassion and kindness, my friend. You inspire me.

walter said...

I thought carefully, Elizabeth, about the reaching out that you expanded to Deb. I use to read a lot of Frieda Fromm-Reichmann in my days of mental health professional in community psychiatry in New York. What I discern from it is diversity between solitude and aloness; a diversity which reached its completion in the celebration of Mass at 6.30 pm local time this past Sunday. Solitude is in such emotional experience where I feel nobody joins me in whatever gently takes my attention and concentration. Aloness is in such emotional experience where I feel the fullness of my aloness because I deeply comprehend that I am not alone. A comprehension that my personal history is made by a genuine experience of community – realized community. And realized community is from where I discern the actualizing potential of affirmative mysticism and expansive community. I hope Deb will see in Telling Secrets a way to expand her sense of community. May we find ways to support those who speak truth to power regardless of political party or ethnicity. Love always finds a way to bring us together. May love find us and strengthen us and keep us grounded. Love, genuine Love is conceived absolutely by the Mind of God. Grant us so to be joined together in unity of spirit by the teaching of Jesus and the apostles and the prophets, that we may be made so a holy temple acceptable to God; through Jesus Christ our Lord, who lives and reigns in unity with God and the Holy Spirit, for ever and ever.

Walter Vitale

Anonymous said...

I sometimes read the words on my screen that come from your blog and say, "Damn, that's good stuff."

Just thought you'd like to know that your "not normal" readers recognize your (not so crazy) genius regularly.

and prayers for all who struggle with depression--it runs wild with my families and friends.

Peace, chrissie

Elizabeth Kaeton said...

Thank you, Walter, for your kind and compassionate words to Deb.

Elizabeth Kaeton said...

Thank you, Chrissie. Depression and bi-polar disorder are difficult but not insurmountable diseases. "Normal" craziness" is my forte.

Mary-Cauliflower said...

Thanks for telling me about this book. I read The Eden Express when I was a freshman in college, and I've always wondered how the rest of Mark's life turned out.