ECT vs. TMS. VNS vs. DBS. Huh? (Part Two)

I had no idea I was wading into a mysterious minefield of acronyms when I started comparing ECT and DBS last week.

All weekend, I mulled over this "charged" debate between Electroconvulsive “Shock” Therapy (ECT) versus Deep Brain Stimulation (DBS).

The more I thought about it, this more this “either/or” proposition bothered me.

CHARGED, CONTROVERSIAL, CONTENTIOUS

It's charged, all right. Very controversial and political. Consider the history of ECT.

Add all the agitprop Hollywood and other moviemakers have infused into the emotional discourse that swirls around ECT, morphing a psychiatric treatment into an instrument of cinematic horror – and no wonder ECT is so contentious.

Finally, a 20-minute phone-chat with my psychiatrist, Dr. Bob, cleared things up.

You'll see what I mean when I spell out the following acronyms of four approaches that all play a part in this "charged" debate.

ECT AND DBS AND VNS AND rTMS for TRD

ECT is Electroconvulsive "Shock" Therapy – for years it's been proven to work in many cases.
rTMS is repetitive Transcranial Magnetic Stimulation – similar to ECT, but less invasive, does not cause a seizure, but is still experimental.
VNS is Vagus Nerve Stimulation – newest of these procedures, surgical, not as invasive as DBS, but similar. Doesn't involve drilling holes into the brain. Not yet widely available.
DBS is Deep Brain Stimulation – most invasive surgical procedure, considered the last resort. ECT is a prerequisite. Still undergoing trials.

ECT, TMS, VNS and DBS all fall under the general category of Psychiatric Neuromodulation – procedures that use either electrical or magnetic currents on the brain to treat debilitating psychiatric conditions – mainly treatment resistant depression TMR – long term, chronic depression or constantly recurring depression which does not respond to standard treatments like medication or psychotherapy.

Dr. Bob explained that ECT and DBS are like apples and oranges. They don't compare as well as ECT vs. rTMS. And VNS vs. DBS.

NOBODY UNDERSTANDS WHY OR HOW "PSYCHIATRIC NEUROMODULATION" WORKS

Nobody really understands how and why these procedures work and the only one with any real track record is ECT.

Veteran CBC and CTV radio and television broadcaster Helen Hutchinson calls ECT her "ace-in-the-hole."

In 1994, after years of numbing, debilitating depression, and more than five years of psychotherapy, a series of antidepressants, four hospitalizations and two suicide attempts, Hutchinson agreed to try ECT. One course. Six treatments.

"I welcomed it when I finally decided to have it," she told me in January 1995, during a Toronto Sun interview. "After all, what can I lose – a few brain cells?"

After her first ECT treatment, "It was like the light went on, like a blind suddenly flapped open. Instead of being in a tunnel with just a tunnel at the end, I was released," she said.

Earlier this week, Hutchinson, now-73, sounded vibrant and excited to hear my voice after 13 years when she picked up her phone.

SHE NEEDED ONE COURSE. SIX TREATMENTS. NO MORE.

"I'm just fine," she said. That one course of ECT did the trick.

Hutchinson still sees her psychiatrist regularly, takes an antidepressant and knows if ever her depression threatens, ECT is available on an outpatient basis.

“That’s never been necessary,” she said.

For Deanna Cole-Benjamin, more than 80 ECT treatments did nothing for her devastating depression.

"For a short time, there seemed to be a glimmer of hope that it would work, but it never did," the Kingston, Ontario public health nurse said recently on the phone – happy to interrupt a quiet summer evening in her backyard with her husband and four children.

In April 2006, Cole-Benjamin, a public health nurse, now 44, was the subject of a riveting Sunday New York Times Magazine feature called A Depression Switch?

ECT IS A PREREQUISITE FOR DBS

Her depression seemed to come out of nowhere and for no reason in late 2000. Antidepressants were useless. Eventually, she had to stop working and was hospitalized for 10 months. Her depression proved completely resistant to all drugs, psychotherapy and all that ECT. For the next four years, she was in and out of hospital many times and often contemplated suicide.

In 2004, she was asked to participate in the first clinical trial of Deep Brain Stimulation, radical new brain surgery for treatment resistant depression. It was developed in Toronto by neurologist Dr. Helen Mayberg and her neurosurgeon collaborator Dr. Andres Lozano whose small DBS trial at the Toronto Western Hospital was recently published in the journal Biological Psychiatry.

"I feel very well," Cole-Benjamin told me.

The battery in the neurotransmitter in her chest (a pacemaker-like devise) needed to be replaced once, "but that's just day-surgery. Now I just go to Toronto periodically for check-ups," she said.

DBS – VERY, VERY INVASIVE SURGERY

“The initial surgery was very, very invasive," she recalls. It involved drilling holes into her skull and then deep inside her brain, so two electrodes could be inserted into Section 25, a procedure that has already been performed on 30,000 people with Parkinson's Disease.

She was awake during this two hour operation, under a local anaesthetic so she could report any changes she felt.

Today, Cole-Benjamin jokes about her brain bionics.

"My head's a little bumpy from all the electrodes," she said, laughing. "My hairdresser always says that – and when I'm travelling, I can't go through airport security scanners."

A small price to pay to have your life back.

 

A charged debate: ECT versus Deep Brain Stimulation (Part One)

This morning I’ve been on a complex and fascinating odyssey – inside the brain.

It all started with Deep Brain Stimulation (DBS) and how it compares to Electroconvulsive Therapy (ECT), commonly known as “Shock Treatment.”

That was my assignment – based on a story posted on Healthzone.ca and in print earlier this week by Star Health Writer Megan Ogilvie. It covered a tiny Toronto Western Hospital trial of 20-patients with intractable depression who underwent DBS.

DBS was originally developed to treat Parkinson's Disease. It's a relatively new and highly invasive treatment involving surgically inserting a pacemaker-like battery into the chest that pumps electrical currents through electrodes that have been drilled deep into the brain.

Somehow, no one knows exactly how or why, these currents rejig the brain’s chemistry and alleviate severe depression – the deep, dark, deadening depression that necessitates hospitalization and doesn’t respond to any other treatments — drugs and ECT. It's not that common.

A year after surgery, 7 of the 20 patients in this trial were still symptom-free. Others, reported significant improvements.

Okay. Let’s rewind a little bit, and talk about ECT - Electroconvulsive Therapy. Shock Therapy.

ECT has been around for decades, since the 1930s. It’s still used today, because it works.

However, today’s ECT is not the same as the original ECT of the 1930s in Germany Italy (corrected August 5), where it was invented.

Like a 1908 Model ‘T’ Ford and a 2008 Shelby GT500 – both are automobiles. Both Fords. Both transport you from Point A to Point B. But the resemblance pretty well ends there.

So it is with ECT.

Today, ECT is more streamlined, sensitive and safer than its earlier predecessors. It delivers a less bumpy ride. It’s administered with more care and compassion for the patient and the risks are minimized.

But it still does the basically the same thing. It causes a mild convulsion in the brain which somehow helps ease depression and mania or psychosis. Faster, more efficiently, and with fewer side effects than medication.

It’s not DBS, but it’s often tried before DBS is even considered. If ECT doesn’t work – and many treatments are usually administered first – if medications don’t work, then other options are considered. One of them, the newest, may be DBS, which is still undergoing trials.

Before we go any further, let’s take a little detour to Hollywood.

Psychiatry has always held a fascination for movie makers, though rarely is it accurately or fairly portrayed.

That’s certainly the tragic case with ECT because Hollywood has strongly influenced the public perception of a treatment that for many years has proven its effectiveness.

Think Milos Forman’s 1975 film adaptation of Ken Kesey’s 1962 novel One Flew Over The Cuckoo’s Nest.

ECT is laced with intense often irrational emotion. Milos Forman’s film stoked that fear, especially as protagonist Patrick McMurphy (Nicholson) has a barbarically administered ECT treatment, which doesn’t faze him. In the end, however, his irrepressible spirit is permanently suppressed with a frontal lobotomy.

In the minds of the 1975 movie-going public (and to this day), this legendary, Oscar-award winning film and it’s portrayal of ECT and that lobotomy, I would bet my life, remain irreversibly confused and have became one and the same.

One Flew Over The Cuckoo’s Nest ignited such a powerful and pervasive surge of anti-ECT sentiment that people ever since, who may have benefitted from ECT, are petrified and often refuse to have it, though it saves lives, helps people regain their healthy lives and prevents suicide.

I’m not saying people haven’t suffered from ECT. They have. Those incidences are not recent.

In the mid-1960s and 1970s, I had about five or six courses of ECT – one course can be six to 12 treatments – at the Clarke Institute of Psychiatry, when the anti-psychotics of the day – Haldol and Chlorpromazine – didn’t work for me. Nothing was working for me.

I was severely “catatonic” or “manic” or “psychotic” — take your pick. They’re all forms of psychosis — and believe me, I was psychotic. I remember.

I’ll never forget being wheeled on a gurney into a bright, white, sterile room. Very antiseptic smelling, like a small operating room. I was hooked up to an IV and something was put into my mouth to prevent me from biting my tongue. I was anaesthetized. Out like a light.

Then I remember waking up with a mild headache which lasted about 10 minutes.

ECT helped me, when nothing else did. I did not have any side effects. If there was memory loss, I have no idea what I’ve forgotten. I seem to manage fine as a reporter where memory is a crucial tool.

Stay tuned for Part Two.

Mad Pride and more

One last word, for now, about Mad Pride...

Saying, "I'm mad," is analogous to a person who is gay or lesbian or bipolar or transgendered saying, "I'm queer."

Reclaiming words that in the past were putdowns or slurs or insults can educate the public. They show that you're comfortable with who you are, too. A person first. A member of the human race. You have the right to be treated equally.

Saying, "I'm crazy" or "I'm nuts" or "I'm mad," can really feel good, too. It's all in the way you say it. Smiling, confident. Not cowering or fearful. That's where the "pride" comes in. It's a process, like anything else.

Why does a mental illness diagnosis seem to colour a whole person? A physical illness doesn't. I hate hearing someone say, "I'm diabetic," instead of "I have diabetes." No one says, "I'm cancerous."

We're all unique. Multifaceted.

I never say, "I’m mentally ill." Instead, if I must, "I have a bipolar diagnosis." (That puts the onus on the person who made the diagnosis and who could, quite possibly, be wrong. People heal. Recover.)

I’m also a wife, stepmother, sister, daughter, friend, dog-owner, writer, teacher, volunteer, advocate and public speaker. There are more, but those are the basics.

Why not list all your different facets. As an exercise.

"Coming Out Crazy" is exactly what the healing process is all about. Or can be. In whatever way you want – talking, writing, drawing, dancing, running, playing tennis, working when you love your work, expressing yourself freely in some wonderful way that allows the real "you" to come out. Journaling is great, if you like to write.

Try this! It’s really therapeutic! Fun! And for colour, just click  your mouse a few times in the blank spaces. You'll see!

Let's say you can, with medical supervision, wean yourself off your medication. Or maybe you don’t want to. Or don’t feel ready to. It's all up to you. It's your life!

Let's say you've been emotionally stable for years, like me. I feel more comfortable with medication because of my particular mental and physical health profile. Psychosis. Never depression. Other health reasons, too.

Why do you need a label, other than your name? Or "human." You're YOU!

Saying, "I'm mad," is all part of alleviating the fears some people harbour around mental distress or extreme mental states or illnesses. Even your own. Have fun with it. It helps fight prejudice and discrimination.

You don't even need to say it. Feel it. Smile at yourself in the mirror and say, "So what? Who cares if I take medication to help me maximize my wellness. Yes, I'm mad. I'm me."

There's nothing wrong with you! Whether you have a diagnosis or not. Whether you take medication or not. As long as you don't hurt yourself or anyone else! As long as you're safe and you feel well.

Better still, as long as you're progressing towards being the best person you can be. Whoever that is. That's an ongoing journey. Never ending.

We're all a little a mad. Not everyone can easily "Come Out Crazy," and disclose. It's a process, too. Not necessarily appropriate for everyone. All depends on you. It's a personal choice and something that must feel good for you. Better than keeping everything inside, especially if it festers or bothers you.

Just something to think about.

So what is Mad Pride?

What a wild week I've had here in the Coming Out Crazy cranny.

We made it onto several American blogs. Have a look at the fiery comment thread on my last post about Mad Pride Day. Some exciting, dramatic and intense emotions were flying fast, back and forth, from people on both sides of the Great Divide.

This is great. Just what a blog should stir up. Reaction. Emotion. Anger. Disagreement. Controversy.

All about Mad Pride.

So, let’s reflect.

Mad Pride fights oppression. Like Black Pride that evolved from the history of Black oppression and Gay Pride that fights discrimination against Gays and Lesbians.

Women have been and still are oppressed, so International Women’s Day on March 7 is an international holiday – and a day off in many countries – to celebrate women and recognize the history of the oppression and maltreatment of women, particularly in the labour force.

“Pride” movements are social-change movements and Mad Pride is no different. It’s a Human Rights crusade.

Mad Pride has a political agenda not universally accepted and hotly political.

If you believe the biomedical approach to “mental illnesses” – that they are lifelong, incurable conditions like diabetes, “brain diseases,” that must be diagnosed, managed and treated with medications and other therapies, Mad Pride will seem odd, perhaps trivializing.

In July 2007, Respectives, McMaster University’s Human Rights and Equity Services Newsletter devoted a whole issue to Mad Pride.

Worth reading. It refers to “so-called mental illness.” A philosophical issue. As yet, there is no scientific evidence that proves mental illnesses exist organically, in the brain, as “chemical imbalances.”

There are still a lot of assumptions widely considered to be truths. They have to be questioned.

Positron emission tomography or PET scans can show some differences in the brains of people with schizophrenia diagnoses, but Pet scans are not yet used for diagnostic tools.

Furthermore, "difference" doesn’t necessarily mean "disease."

Many people question the existence of schizophrenia as a “mental illness.” Between 30% and 50% of people with schizophrenia diagnoses get better with no medical intervention at all.

The World Health Organization did two very conclusive studies comparing schizophrenia recovery rates between developing and developed countries. Recovery rates in the developing countries were 50% higher than the developed countries.

Mad Pride may date back to the anti-psychiatry movement of the 1950s and 1960s when psychiatric patients often were subjected to cruel, inhumane treatments.

• Electroconvulsive “Shock” Therapy
• The earliest “typical” anti-psychotic drugs replaced lobotomy – Thorazine or Chlorpromazine were called chemical lobotomies and they were utterly dehumanizing, turning people into zombies and they had serious, sometimes irreversible side effects.
• Involuntary hospitalization and treatment
• Physical restraints

I lived through all of these “treatments” in the mid-1960s. Unfortunately, I remember them, though I wish I could forget. I can empathize, though I’m more critical of psychiatry than anti-psychiatry.

Mad Pride Day is on July 14, Bastille Day.

Relevant because two of the seven prisoners freed by the crowd of French peasants in 1789 had been detained solely because they were considered ‘mad’.

Last year, Toronto Mayor David Miller officially proclaimed July 14 “Mad Pride Day” and a week of activities around it winds up this year’s events this weekend.

Tomorrow, the 2nd Annual Mad Pride Bed Push and Parade begins at 1 p.m. at the Ossington and Queen entrance of Centre for Addiction and Mental Health.

On Sunday, a workshop and discussion about Mad Pride takes place from 1 to 3 p.m. in Room 560 at the Sally Horsfall Eaton Building at 99 Gerrard St. E.

Mad Pride is all about social-change and empowerment. It's for the public and for people who've been hurt by the mental health system.

It’s gone global since it started in the 1990s in the U.K.

Mad Pride fights fear and ignorance with public education. It raises awareness through serious and witty, often theatrical, creative events that celebrate the people who have been oppressed by a mental health system that was not always humanistic.

Mental hospitals or institutions were historically run more like prisons than places promoting recovery and well-being. Remnants of that prison model still exist today, though they’re slowly disappearing. In many psych wards, you have to earn a pass to leave with good behaviour. I remember having my clothes locked up.

Mad Pride is against psychiatric labelling, which works well for doctors but can destroy a person’s sense of self, his or her feelings of uniqueness.

Labelling can promote denial –  toxic when it comes to mental health and wellness. And Recovery.

To be continued...

Sanity Lapses and Framing Mad Pride

This morning, my pregnant Dandie Dinmont Terrier, Lucy, woke me up at 4:15 — she had to pee and was ravenous. After letting her out and feeding her, I started reading one of my favourite left-leaning zines, The AlterNet.

Today’s story? “The Bad Frame: Why Are The New Yorker, Salon and Other Liberal Media Doing the Right’s Dirty Work?”

There's a media brouhaha brewing over the latest issue of The New Yorker magazine and its cartoon cover that plunges over the edge of satire into rank offensiveness.

Barry Blitt's cartoon is clearly a caricature of Barack Obama, pictured wearing a turban, knuckle-knocking his wife Michelle, her hair in an Afro, decked out like a revolutionary with a machine gun slung over her shoulder. They're standing in the Oval Office near a portrait of Osama bin Laden hanging over the fireplace. An American flag smoulders in the hearth.

Obviously satirical, it's possible that even the prestigious New Yorker is capable of a lapse of sanity.

Anyone is!

This cover, on newsstands today, is perilously over-the-top and the sensational publicity it's igniting has the Obama campaign fuming. The right-wing media are poised for a political free-for-all that could backfire on the original intent of the cartoonist and the magazine — to mock right-wing opposition and its misguided,  often flawed spin on Obama.

Don Hazen, who wrote the story, said the cartoon makes New Yorker editor David Remnick and Blitt appear "arrogant and indulgent, insensitive and out-of-touch with political and media dynamics."

I’m not going political on you, but language is political and powerful, and it’s what I learned about the linguistic, editorial “frame” in today’s AlterNet piece that I want to share with you.

In the past, I've referred to what might be considered a "frame" by its academic, practically unpronounceable name, the praeteritio.

Quite honestly, I didn't know "praeteritio" was, in essence, a "frame."

The term "praeteritio" is fine for PhD’s in linguistics, but there's a much simpler way to describe how a frame works editorially.

It’s relevant to Mad Pride, when you consider what Mad Pride is all about — namely counteracting "stigma" and "shame" by celebrating, educating and learning what “madness” has meant historically and how that history colours our perceptions of “madness” or “extreme mental states” or “mental distress” today.

Why? So we can feel good about who we are! Stand proud!

By now you know “stigma” and “shame” are two words I rarely use. I detest them.

Here’s why. Those two words are “bad frames.”

Hazen explains it this way: "Every word is a frame; evoking a frame reinforces and strengthens that frame; negating a frame, i.e. attacking it, reinforces that frame; and finally, words defined within a frame evoke that frame." 

Hazen cites the example of Richard Nixon saying, “I’m not a crook.”

So think about it.

“Stigma,” by definition, is a mark of disgrace associated with a particular circumstance, quality or person. “Stigma” is most often, almost exclusively associated with mental illnesses.

Here’s how a frame works in this case.

Say, “Stigma” and you reinforce “stigma.”
Say, “Anti-stigma” and you still reinforce “stigma.”
Define, “Stigma” and you evoke “stigma.”

The medical and everyday public discourse about mental health includes this bad frame. All the time!

It evokes disgrace and “shame,” itself a bad frame, even though it’s trying to eradicate them.

This is Mad Pride Day. All kinds of people all over North America, Europe and Africa, people with “lived experience,” my fellow psychiatric travellers, are working so we can celebrate who we are. We deserve to celebrate.

Let’s start by using good frames today, all week, and on and on.

What’s a good frame?

I can think of a great one to try!

“Hope.”

Happy Mad Pride Day!

Here comes Mad Pride Week!

Monday is Mad Pride Day!

According to the Toronto’s Mad Pride Organizing Committee – yes, we have one – July 14th has been officially proclaimed Mad Pride Day in the city of Toronto and in cities that celebrate Mad Pride in North America, Europe and Africa.

In Toronto, all next week is Mad Pride Week from Monday, July 14 to Sunday, July 20.

To be honest with you? I’ve never, ever attended a Pride event in my life. Any kind of Pride. Parades are not my thing. I’m not a crowd lover. I didn’t even like the CNE when I was a kid, except for the Food Building.

With two exceptions – in 2006, for The Toronto Sun, I covered Caribana and The Elvis Presley Festival in Collingwood. They were assignments. No choice.

Right now, I’m looking at the Toronto 2008 Mad Pride Week schedule and considering joining the festivities.

Mad Pride Week offers much more than a parade.

It’s a week of arts and edification. An entertaining way to learn about “Madness” through literature, poetry, film, theatre, music and lots more. Even an event to raise awareness about our Human Rights.

Everybody’s awareness.

On Monday – Mad Pride Day – at 6 p.m. at the Ossington Street Entrance, historian Geoffrey Reaume is leading a tour of the Patient Built Wall and Memorial at the Centre for Addiction and Mental Health at 1001 Queen Street W.

This is significant Toronto history, not only mad Toronto history.

I’m planning to be there. It’ll be worth it.

Reaume knows his stuff. He’s given this tour before.

He’s also associate professor in the Critical Disability Studies Graduate Program and School of Health Policy and Management at York University, where he designed and teaches a course in “Mad People’s History.”

Reaume is the author of Remembrance of Patients Past: Patient Life at the Toronto Hospital for the Insane, 1870-1940. Toronto: Oxford University Press Canada, 2000. A riveting yet tragic book.

Geoffrey’s a lovely man. I’ve met him and interviewed him. He’s charming and passionate about this subject.

Mad Pride is a celebration of our history. By “our” I mean people, like me, who consider themselves “psychiatric travellers” as I do.

So Happy Mad Pride Week, Toronto! It’s high time we all celebrated “madness.”

I often say, "We can all be a little crazy, sometimes, can't we?"

Heartfelt thanks go to the unflagging work of the Mad Pride Organizing Committee, The Friendly Spike Theatre Band, the Parkdale Community Legal Services, Parkdale Activity Recreation Centre and Soundtimes Support Services.

This is no fad

In a recent comment a reader suggested that writing about "mental illness/health" in the popular press may be a "fad."

Blogs, I’ll assume, fall into that sphere.

Well, as Maxwell Smart might say, “Verrrrrrrry interesting!”

A “fad” is trendy, a “craze,” and by definition, short-lived.

Not for me.

For 30 years – from September 1977 to January 2007 – I wrote all kinds of Toronto Sun stories about mental illnesses/health issues as often as I could.

Chatelaine magazine invited me to write a major, 2,500 word autobiographical story about my life with bipolar disorder.

It ran in October 1999.

In February 2007, two weeks after leaving The Sun, The Globe and Mail ran a prominent op-ed piece of mine. The headline? “Mental illness is no crime.”

For far too long, mental illnesses have been linked in the media – unjustly and erroneously – with violent crime.

I’ll never forget the words of Ian Chovil.

In 1998, he and I received “The Courage to Come Back” award from what is now the Centre for Addiction and Mental Health.

Ian has a schizophrenia diagnosis and is in Recovery, though it wasn’t called “Recovery” back then.

“I’ve learned it’s easier to get a job if you’re an ex-con than if you’re an ex-psychiatric patient,” Ian said.

Is that still true? Who knows. Getting hired today is no cake walk, period.

As for writing accurate, provocative, thoughtful mainstream stories about mental health issues and mental wellness? This is my passion. My calling. Has been for years. Always will be. Increasingly.

It’s a trend gaining momentum. Not a fad.

Take Prithi Yelaja’s superbly sensitive story in last week’s Saturday Star. Her focus was on why so many people are afraid to speak out and seek help for mental health problems.

The headline used the word “shame.” I don’t like that word. It’s negative. Means humiliation and dishonour.

It reinforces prejudice and discrimination.

Ironically, “shame” is what Yelaja’s story successfully helped to eradicate with education and information.

She dispelled some fear and ignorance. I applaud her.

We need more news features like it.

They get people talking.

Out loud. Listening. Perhaps hearing.

Talking is healthy and healing.

Here's the scoop!

“Coming Out Crazy” has received a great Blog Review by Stephany on Soulful Sepulcher her punchy, potent, yet often poignant health blog.

She hails from “Somewhere, Out There. United States.” Bush America.

She’s my kinda gal. A self-described “free-spirit,” a charming photographer, especially of her garden (all I can grow with my black thumb are weeds), a teacher of children with special needs – and a vigourous mental health advocate.

Feisty as hell.

Her daughter has autism. Life is not easy for her, but she fights for all people in mental distress, people without their own voices. She fights for ethics and integrity. Moral medical politics. I know. That sounds like an oxymoron, but that's why she's so engaging.

She has the courage to fight for her dreams.

For the fundamental human right to mental health and emotional wellness.

Her eclectic blog is number 41 according to Wikio’s July 2008 ranking of “the most influential blogs in the blogosphere.”

She has said, “I believe that one voice can and does make a difference. Truth prevails.”

Wow! As a new kid on the blogging block, I’m honoured, Stephany!

Thank you.

Talking Trauma

Recently, a courageous woman named Sonia commented very pointedly about my last post, “A Matter of Opinion.”

A survivor of incest and childhood sexual, psychological, physical and emotional abuse, she said very few people will accept the "science" and "symptoms" of Post Traumatic Stress Disorder.

This reminded me of a true story – about trauma and mental distress.

Last fall, researching mental health, one of my passionate and perpetual pursuits, I came across Dr. Daniel Fisher and telephoned him in his Lawrence, Massachusetts office.

In 1978, Fisher was a 25-year-old neurochemistry PhD student at the University of Wisconsin, studying the biochemical causes of schizophrenia.

One day, he started hallucinating.

Eventually, he was diagnosed with schizophrenia. Hospitalized. Locked in seclusion in a military hospital for several weeks. No one knew how to help or heal him, so they ignored him.

So distressed by this cruelty and indifference, “I vowed I’d become a psychiatrist if I ever got out, so no one has to be treated that way,” he told me.

True to his word, within less than 10 years, Fisher completed his doctorate in neurochemistry, his MD at Georgetown University and his psychiatric residency at Harvard.

He has become one of a handful of practising psychiatrists who openly discuss their schizophrenia.

Today, Fisher is a clinician, researcher, advocate, teacher, writer, former White House New Freedom Commission on Mental Health member and executive director of the National Empowerment Center (NEC).

He cofounded the NEC in 1993 with psychologist Patricia Deegan, one of the world’s leaders in Recovery. In her case, also from schizophrenia.

Fisher bridges two polar-opposites. Two dramatically different, hostile schools of thought.

The mainstream biomedical Big Pharma-pushing model of “treatment for mental illnesses.”

And, a growing, evidence-based, individualistic, more peer supporting, holistic approach to Recovery from mental health and wellness.

“I’ve recovered from schizophrenia, helped hundreds to recover and I haven’t taken medication in 30 years,” Fisher told me during our conversation last November.

Though he still experiences some symptoms, he says he can handle them using a variety of strategies that help in “balancing and harmonizing my mind, body and spirit.”

They include breathing and meditation, aerobic exercise, healthy eating, organizing time and activities, “living in humour,” listening to music, voicing his creativity by writing in a journal, drawing, gardening, any activity that will “put me in closer touch with my inner voice,” he said.

And sleeping well.

“I’m not opposed to medication and sometimes it can be a very helpful tool,” he said.

“Researchers have been unable to identify a chemical imbalance characteristic of schizophrenia or other diagnoses resulting in the ‘label’ mental illness,” he said, referencing several studies.

“Our minds exist in a different reality than our bodies and cannot become ill in the same way as our bodies.”

Psychiatric diagnoses or labels, often internalized, are so powerful and potentially harmful that instead of using the social construction “mental illness,” he prefers “severe emotional distress that temporarily disrupts a person’s major role in society,” which, he noted, is far less damaging.

“Furthermore, schizophrenia is not a permanent condition. Though that is still taught, it’s incorrect,” he said.

Rather than biochemistry in the brain as a cause of schizophrenia or other severe psychiatric conditions, “We help people understand that their symptoms are expressions of lack of connections with others,” Fisher said.

Often, these traumatic experiences are childhood physical, emotional and sexual abuse. Often called Post-Traumatic Stress Disorders. Shocking, distressing, devastating, harrowing – emotional trauma.

The results, even in adulthood, are potent. Painful and paralysing feelings of loss. Lost opportunities. Lost innocence. Lost childhood. Deep, visceral sadnesses. Consider how soldiers in Afghanistan and Iraq deal with the endless agony, the mental and emotional wear and tear of the battlefield. Suicide is not uncommon.

Fisher said, “I share lessons I’ve learned, that finding a way to connect on an emotional and spiritual level and building community helps to develop our full potential. That leads to recovery.”

During my first stay in a psychiatric ward for observation, an orderly sexually assaulted me. It was in the early 1960s. I was in my early teens. I blocked that memory for 14 years.

It was a life-changing trauma. After that, I had my first “psychotic” episode. Mania. My madness.

Now, I'm in Recovery. I'm fine, but I cannot erase the memory of what that orderly did to me. Oh, how I’ve tried.

Sonia, you're not alone.

A Matter of Opinion

Symptoms.

Health is all about symptoms.

Chances are if you have ’em, something’s going on!

Take my hand. About three weeks ago, I fell and broke my right (write) hand, remember?

Idiot me, I ignored the symptoms. Swelling, bruising, pain, disappearing knuckles, pain.

Just bruised it, says I. Nothing they can do about bruised hands.

What do I know?

Nothing, as it happens.

After much cajoling by people who know far more about broken hands than I (namely mothers of sons who play hockey and other sports) an x-ray showed something.

Broken fifth metacarpal, a splint and things are going swimmingly in the hand department.

Turns out my symptoms signalled that there was, indeed, something going on.

Then there’s your mind.

Symptoms are a little different with minds.

Minds don’t swell. (Heads, maybe, but not minds.)

Minds don’t turn black and blue, and bruise. (Depression may feel black and “the blues” may feel bad and sad, but no one can see your mind bruising. Signs of emotional and mental pain can’t be seen on an x-ray.)

A mind doesn’t break like the bone in my hand. That’s a mixed metaphor, but it’s time to clean up the language and reconsider what mental health and wellness is all about.

It ain’t just about symptoms. Everybody experiences emotional and mental well-being differently. The same can be said about mental distress. It’s not hard science. Not detectable under a microscope.

It’s subjective. A matter of opinion.

I have a hypomanic personality. I’m exuberant. There have been times, not lately, when I’ve been a little too exuberant. High. Manic.

I remember once, many years ago, in my office, I became pretty excited about something. Very happy.

I was talking very fast. Probably too loudly. I do, when I’m excited. I think fast and talk fast. One of my colleagues, with all the best intentions in the world, said, “Maybe you should take a pill.”

There’s a difference between happy and high. I know the difference. My husband knows the difference. So does Dr. Bob. Most people who don’t know me that well, think that when I’m really happy or excited, when I talk too fast, there’s something wrong with me.

They think I’m getting manic.

They say, “Calm down. You’re sounding crazy. You’re sounding wild.”

They’re wrong. Because when they say those things, I can take a deep breath and slow down. But it drives me crazy. I have a psychiatric history – and it’s history as far as I’m concerned – so people think they can spot my symptoms, diagnose and prescribe.

Mental distress and mental health don’t work that way.

These are symptoms, if you like, but in someone without my history, I ask you, would they be told they’re crazy and wild and should calm down and to take a pill?
 
Think about it.

Most psychiatric patients are given three or four different diagnoses before doctors can settle on the "right" one.

We all have symptoms – signs or traits that make us the unique human beings we are. I choose to interpret those signs or traits to be neutral. Characteristics. Traits. Features. They can signal something good or not so good. Or nothing much at all.

In most cases, my “symptoms” work to my advantage.

After all. I’m a “glass half-full” kind a gal. An original cockeyed optimist.

Emphasize “cockeyed.”

It's all a matter of opinion!