Say "Yes" to Mental Health Recovery...

Yesterday a gentleman named Stephen Batson sent me an email. 

The subject line? "another country heard from" ...

It turns out that Mr. Batson is the Project Coordinator of the Michigan Recovery Center of Excellence, where "Recovery is the foundation of service delivery in the Michigan community mental health system," it states under Welcome to Michigan Recovery" on this website.

"The Michigan Department of Community Health (MDCH) has charged mental health providers, consumer leaders and other community stakeholders to work together to promote recovery-based service delivery models."

Stephen wrote to me because he liked my last post on – Coming Out In Class. 

(By the way, I'm happy to report that 15 students showed up in my class this morning. Earlier this week, I had seven students attend with nine registered. This morning, I had 15 attend with 20 registered. This, after I shared with them the fact that my community service is mental health advocacy and I have a long history of mental health problems. I even told them about this blog. Things are looking up.)

Stephen told me in his note that he found me on a blog that's been running since 2006 called The Recovering Life with the tagline – Observations on a Cultural Phenomenon – written by his friend Norm DeLisle.

Norman G. DeLisle runs a small, non-profit organization called the Michigan Disability Rights Coalition and blogs like a house on fire, posting five or six times a day. He's worked in disability advocacy for 37 years, has background in education, Montessori, and psychology. He seems to me to be a powerhouse who works tirelessly to raise awareness and make a difference. He doesn't miss a trick and his blog is well worth investigating.

It seems he posted my Wednesday entry on his blog and that's where Stephen Batson comes in. "Every story makes us feel good about our decision to live real and open ourselves to others," he wrote, inviting me to check out his site. I did. It's amazing.

Then he invited me to a Recovery Conference in Detroit on October 6, sponsored by the Detroit-Wayne County Community Mental Health Agency, a real going-concern when it comes to recovery judging by its publication, The Advocate News, which is devoted entirely to mental health recovery and hope. 

Stephen asked me if I knew Dr. Daniel Fisher of the National Empowerment Center, which he founded in Lawrence, Massachusetts, near Boston. "Talk about leadership," Stephen said. 

As a matter of fact, I do. Though I've never met him. I know Dr. Fisher's remarkable recovery story and his spiritual and healing approach to severe emotional trauma, often the root cause of mental disorders. Having hope is crucial.

I've read several of his books including "One Vision of Recovery" – his personal story – and "A PACE/Recovery Reader" – an excellent historical anthology of writings about psychiatry, mental illnesses and recovery. 

My psychiatrist, Dr. Bob, was the first person to enlighten me years ago about the bogus claims that mental illnesses are caused by chemical imbalances in the brain – a theory that has never been proven. Fisher elaborates in his writings. I'm reading stories from substantial sources that corroborate this all the time, but still, especially here in Canada, the biomedical model which is grounded on this theory seems to stand firm. Psychiatrists prescribe cocktails of drugs and insist on diagnoses that rarely fit the individual. And people are getting sicker all the time, when they could, indeed, recover and live meaningful lives. 

We have universal health care here in Canada, but we're in the dark ages when it comes to mental health recovery. We're the only country in the G8 with no national mental health strategy.

Dr. Fisher subscribes to "recovery at your own pace." When I interviewed him several years ago, he stressed that medications can be helpful but only as tools, in the short term. There are other tools. Toolboxes full of them. He stated that he has not taken any psychoactive medication for more than 30 years. Community, inclusiveness, helping people to feel that they are not alone, that there is hope are among his prescriptions for recovery.

His story is recovery story remarkable. 

Years ago, as a PhD student, Fisher became delusional, ironically while researching the biochemistry of the brain in schizophrenia. He was hospitalized several times, treated like an animal, shut away and ignored. His psychiatric diagnosis? Schizophrenia.

So demoralized, appalled and angry at how he was treated as a psychiatric patient, Fisher vowed, then, that if he ever recovered, he would become a psychiatrist to ensure that people with psychiatric diagnoses would be treated with dignity and humanity. 

He finished his PhD, went on to complete his MD at Georgetown University and his psychiatry residency at Harvard. He has become a leading Recovery advocate, as well as a clinical psychiatrist – one of a tiny handful of psychiatrists who "are out" and openly discuss their psychiatric histories.

His interview on January 20, 2005 in Medscape is fascinating. Fisher is the featured keynote speaker at the Detroit conference, called Redefining Our Roles in Recovery: It's Everybody's Business. Sadly, my teaching schedule prevents me from attending, though I'd do anything if I could, I told Stephen.

But I'm following the activities of the Michigan Recovery Center for Excellence and Norm DeLisle's blog.

Then, this morning, when I came home after my class, there was another email from Stephen Batson.

"Hi again. I was thinking, on the way home last night, that we have recovery stories on this site. In fact, I will be spending the next seven days in Michigan's upper peninsula visiting drop-in and Clubhouses. While up there I will be video recording more stories to post on the site.

"I'm writing to you today because your article IS a recovery story. Perhaps not like the life stories many others have told, but yours talks about an important aspect of a person's recovery ... relationships' socially valued roles. So, I'm asking for your permission to include your story among the collection we have gathered."

Of course, Stephen. It would be an honour. My story is yours. As I tell my students, I have a mantra, one of several. "I live my life out loud. No secrets. No lies."

It's one way to find peace of mind.

Have a great weekend. I wish you the best, always.

Speak soon.

The healing power of friendship...

As I said in yesterday's post about Mainstay Housing, "Everyone needs a home. A job. A friend." 

In the avalanche of personal email this blog seems to generate, you have no idea how many people have told me that when they become troubled, emotionally and mentally, when they begin to act out or when they've confessed to their friends that they "have a mental illness" – these so-called friends ostracize them. They disappear. Drop off the face of the earth. 

I am always astounded by these disclosures. Stunned. I believe them. Why would anyone fabricate something like that? But, they are profoundly disturbing to me.

Social isolation is not a symptom of a mental health problem. It is the problem, I believe.

No one deserves to be shut away. Ever. Under any circumstances. When a friend deserts you, nothing is more hurtful. So what happens? You shut off. Shut yourself away. Shut people out. Retreat. How can you heal when you can't be reached? Or if you are afraid to reach out? Or you won't allow anyone to reach you?

Years ago. Years and years and years ago, I remember learning that in order to heal emotionally, to heal when you're in difficulty, mentally, you don't need a psychiatrist. A good friend. A good listener. A wise friend with an empathetic heart can be just as helpful.

Yesterday, I spent the afternoon visiting, laughing, sharing and simply adoring a longtime friend I consider my wise woman – Helen Lucas. Artist. Mentor. Inspiration. 

Helen's giclee print above of her glorious sunflowers, titled Trio III, hangs in my home where it infuses me with warmth, energy and joy every time I see it, and that's most of the time. 

Helen is one of the most spirited, gifted, brilliant, honest, and endlessly generous women I've have ever known. She is surrounded with extraordinary people. Her life and her personal journey is the subject of an award winning documentary film that inspires and provokes my women's studies students at Seneca College every time I screen it for them. Her most recent collection of spiritual Dove paintings are being installed permanently in a community centre in Kigali, Rwanda for 20,000 widows and orphans later this month.

Her paintings are in private and public collections all over the world and she has been honoured numerous times. In 1991, she received an honourary doctorate from York University and most recently she was named Ontario's Senior Citizen of the Year 2009. 

But when we're together, all her honours, distinctions, accomplishments and accolades seem to slip into the background, and we're just two women who simply love each other and can listen to each other with our ears, eyes and souls. Without a shred of pretense, Helen shares her wisdom because she knows me so well and I trust her with my life.

This is healing.

Then, last evening, I celebrated my goddaughter Alexandra's 21st birthday with her mother, my bosom buddy and longtime girlfriend Peggy Weir and her family and friends. And yes, Peggy is every inch my "girlfriend" in the truest sense of the word. She has always be "there" for me. It goes both ways.

My wise woman in the afternoon and my closest girlfriend at night.

This was healing, too.  

I met Helen and Peggy at about the same time – around 1978. Both because I interviewed them for features I was writing for The Toronto Sun. These interviews developed into treasured friendships. I don't see Helen and Peggy every day or even speak with them every day. But the moment we connect, it's like yesterday. We pick up where we left off.

Our relationships, in their own ways, are as healing and therapeutic as any relationship I've ever had with a psychiatrist or psychotherapist. Even more so, perhaps, but in an entirely different way. As human beings, our hearts are not like balloons. They will not burst with too much love or because they're filled with too many people we adore. And I guess that's part of it, too. 

Being willing to give ourselves over to our friendships. To be open to loving people which means being brave and courageous and vulnerable to potential pain or even rejection, makes us exquisitely human. 

And isn't it worth it? I would rather risk friendship and bringing people into my life than put up walls to keep them out. I love being open. Wide open. 

Perhaps, that's what Mainstay Housing is really all about, too. Perhaps the power and the success of Mainstay is that the buildings that give people who've fallen into homelessness a place to call home, an apartment with a door that can be locked to ensure their safety and protection, also allows these people to begin to build friendships. To open themselves up. To be brave and courage. To take risks and yes, even to love one another in friendship.

Ironic, isn't it.

This morning, a letter arrived in my mailbox from a longtime resident of a Mainstay apartment. 

She wrote, "We need to get the word out that there are housing providers that want more than just your money... they want you to recover, spread your wings, and fly. Mainstay wants you to thrive and enjoy your life and realize that you are more than your "label" or illness. You are a person first at Mainstay... and I have been given many opportunities to learn, teach, explore, volunteer, and thrive."

She went on to talk about her friends and fellow tenants at Mainstay and ended by saying that Mainstay "builds more than you could ever know. Community, self-esteem, self-reliance, confidence, support and lives. Which for some, may be the first time that they've ever felt 'at home'."

This has been a wondrous week for me. My only holiday this summer. Next week, it's back to school and a new year begins. New students to meet. It's very exciting.

Thank you for sharing with me, for being open with me, for trusting in me and for being with me.

I send you all my love.

Speak soon.

Grading...

Right now, today, I'm living in a nightmare. My own personal trial by fire. It's an ordeal. A struggle. I agonize over it every time I am faced with it. It never gets any easier. I think it becomes more difficult. Maybe it's character-building. I don't know. But it's unquestionably one of the most challenging tasks I ever have to face. 

I'm grading my students. I genuinely like my students. As I grow to know them, more and more. My job is to help them succeed. I tell them that. Again and again. Grading them seems counterproductive to me.

I do not like assigning "final grades" to people. Period. Isn't that what a eulogy is for? Or an obituary? 

How can you put a final grade on a work in progress – a student. I can't pin them down with a final grade and I don't want to. What if I'm wrong? It's possible. I'm human.

My mostly young college students are very vulnerable. They take their marks terribly seriously. They do not yet have the life experience to realize that it's not the mark that really counts, but what they've learned. What they take away with them. What they can apply in their lives – at work, at play, in their personal relationships with the people they know and meet.

"You know, in 20 years you probably won't remember the mark you receive in this course," I always tell my new classes of students in an attempt to defuse their initial concerns about a new course and a new teacher. "But I bet you'll remember what you've learned." 

(I can attest to this. I have no idea what my transcript looked like when I graduated from Seneca in 1971, but I have full recall of what I learned. I can visualize my most outstanding professors and the important lessons they taught are still with me.)

My students look at me incredulously. They don't buy it.

Sadly, for too many of them, marks determine their future. And they're so arbitrary.

A single mark never seems entirely right. It never seems to say enough. It seems unfair.

Do we assign a letter or numerical grades to our sisters, brothers, parents, friends, colleagues, employers and acquaintances? 

"I have an A++++ boss. What about you?" 

"Oh, mine only rates a C+/B-. But she's improving. Maybe next term. We'll see."

Take our politicians. Voting is grading I suppose. Winning or losing is a mark of success or failure. But what does a winning number of votes say about an individual? Other than more people voted for him/her than the other person in the race? I'm a little naive when it comes to politics, I know. But I'm very nervous when I have to apply either a number or a letter grade to a human being. I can't help it.

I don't like competition. Never have. Not when it comes to human beings. (I'm not a sports-buff, so I'm not referring here to games people play. That's different. That can be character-building, depending on the sport. Boxing doesn't fly with me, though. I prefer team sports. But not violent ones. Or golf. Or tennis. I like baseball, too.)

Grading what students learn when they've just finished a course seems rather premature. They should be graded when they've been able to put what they've learned into practice in the real world. A year or two or three later. After they've graduated. And worked for a while. A job is the acid test. A profession.

It would be nice if students could receive a grade of "complete" or "incomplete." But that wouldn't help them in the big picture of their lives – if they want to continue with their education. The post-secondary education system simply doesn't work that way. Too bad. Ultimately grades are for administrators.

So I'm left with my trial by fire every term. I agonize over my eternal conundrum. Is it possible to appropriately and accurately grade or categorize or classify or place a value on a person you see only three hours a week for 14 weeks? Especially the students I teach. Often they're 17 years old and from other countries. International Students. This past term 99% of my Women in Canada students spoke English as a second language. Only one other person besides me in my classroom spoke English as a First Language.

Bear with me for a minute and imagine this. You're going to study at Peking Community College. It doesn't exist, but for the sake of argument, let's assume it does. 

You walk in on your first day and everything is printed in Chinese. Every sign. Everyone speaks Chinese. You are automatically enrolled in a 14-week term of "Chinese as a Second Language" and for 12-hours a week, that's all you do. Study Chinese. 

Then, Bingo. You begin classes where Chinese is spoken and written and everyone around you either speaks Chinese as a First Language, or another language that you don't speak as a First Language – a language other than English.

That's how my students from China, Japan, Pakistan, Russia, Iran, Iraq, India and many other countries feel. My heart goes out to them. You wouldn't believe how hard most of them work and how well they manage to do.

Grading students who are just forming and developing and learning about life seems almost immoral. Unfair. Meaningless. It's a form of pigeonholing that can really be damaging, depending on the individual student.

Isn't that one of the major issues around mental health and psychiatric labels? 

Bipolar Disorder. Anxiety Disorder. Schizophrenia. Hypomania. Depression. 

If I tell you my psychiatric diagnosis is Hypomania, and that's all I tell you about me, what do you really know? About me? Other than the fact that I have no trouble telling you about my psychiatric diagnosis.

A grade is a rating, a classification. A pigeonhole of sorts. Can't the same be said for a psychiatric label or disorder? Yet with psychiatry, where so much is still unknown, the label can be very damaging.

And in psychiatry, once you're pigeonholed or labeled, that's it. Labels stick. You're in the system. Someone may give you another label, too. You'll believe it. You'll internalize it. And that can be very damaging, especially if you begin taking medication. Too often, even the medication may not work for you, because you are unique. Special. An individual with your own experiences, your own body chemistry, your own uniquenesses.

And ultimately, psychiatric labels are for insurance companies, I suppose. Administrators. 

By definition, a label or classification is restrictive. But labels are often inaccurate, and in psychiatry, this is all too commonplace. How many of us have had multiple diagnoses? After all, you're dealing with diagnostics in an imprecise science. They're far more imprecise than a grade in college which sums up a student's classroom performances and behaviour over more than three months. Their assignments, class activities, interactions, attendance and punctuality, questions, concern, tests, exams.

As well as, you can learn a great deal about a student's individual complexities, their extraordinarily diverse cultural and personal perspectives and their backgrounds in the learning laboratory of a classroom.

Why, compared to giving a human being a psychiatric diagnosis, grading a college student seems like a walk in the park.

In school, you can at least change your Grade Point Average or your letter grade with hard work, if you really apply yourself. You can raise it. Improve your prospects. Often there's lots of help available to you.

"I've got a 3.5," one of my former students told me the other day. "Not very good," he said, sounding dejected. Confused. Lost.

Like someone who says, "I have bipolar disorder."

Whether it's a grade or B+ or C+ or a label like bipolar disorder or depression. What does it tell you about an individual? I ask you.

Does that tell you what this person has learned about life or a particular subject? What this person loves to read? Does it reveal their personal ethics and morals? Does it tell you who this person loves and cares about and cherishes? What this person likes to do in his or her spare time? What she or he wants to accomplish in life? What his dreams are? What her hopes are?

If you have a GPA of 3.9 it means you're a good student in a specific course. You write exams well and know all about how to do academic research papers. You have a set of skills at which you can perform in a classroom. 

But what about meeting deadlines in the real world? About respecting your co-workers and their concerns? About being a good citizen?

Does a 3.9 GPA indicate you'll be successful in life? Read Malcolm Gladwell's Outliers for an intriguing perspective on that question.

The same goes for a psychiatric label. It's a pinpoint on the course of life, a judgment made by an individual psychiatrist based on a collection of criteria – the DSM-IV and soon the DSM-V. People write the DSM criteria. Psychiatrists may have their own agendas. 

We are all human. We make mistakes. We're always changing. Evolving. Growing. Learning. And surprising ourselves and others. I'm always curious about people, waiting hopefully to be pleasantly surprised. Often I am.

Our outside appearances may not change all that much. But our minds are constantly in flux. Like kaleidoscopes. Beautiful fleeting refracted images of coloured glass that are never, ever repeated. Never the same. Unique. Like us.

That's why grading is so painful for me.

Teaching – a tonic for soul and spirit!

There's nothing better to keep your mood in check, your mind in shape and your spirits high than facing a group of young, expectant students two or three times a week – and throwing every ounce of your energy into helping them learn a new subject.

Whether in a school room or a community centre, in a college or a university. Teaching is giving back at the highest level. It's giving of yourself. It's tonic for your soul. Nothing makes you feel better about who you are than sharing a little of yourself. You can't buy that feeling. Whether you teach a child to knit or a classroom of serious professionals the secrets of success. 

I am convinced that everyone has something to teach another human being that will be of interest or benefit. Teaching refocuses your energy. Teaching is a gift. And teaching is learning.

My mind has never felt so agile. Teaching is the steepest learning curve I've ever encountered. I'm constantly challenging myself. And wow, do I make mistakes. I have a genius for mistake-making and I've discovered it's best way of all to learn.

I encourage my students to try new things, to take risks, to make mistakes. Lots of mistakes. They think I'm a little mad – but we know that already, don't we. The point is, it seems to work. Students get into the spirit of risk-taking and mistake-making and they begin to branch out beyond their comfort zones. Every time I walk into a classroom, I'm outside mine. I like company.

Of course, I didn't know any of this when I was hired to teach the second half of a Women's Studies course in the summer of 2007 at Seneca College. I had a smattering of teaching experiences – in the 1980s in the journalism program at Humber College, as a guest lecturer, also in journalism at Centennial College, at the now defunct Learning Annex during its hey-day.

Nothing like what I'm teaching now.

This week, I finished my fourth term teaching Women's Studies, the course I was originally hired to teach. It looks nothing like what it was back then. I never teach a course the same way twice.

I adore my students. Every class is a mini-United Nations with young people from all over the world coming together to learn from each other, share their cultural experiences and morph quickly into a vibrant learning laboratory. What an education.

My contract has just been renewed for the Fall 2009 term. Six hours, two classes, at two different campuses. Somebody up there loves me. This is my dream come true.

Right now, I have a pile of final exams waiting on my dining room table to be marked, several assignments still due in, final grades to be computed and my new Fall Addendum to finish for the course I've developed called Leadership in Society – a course where students learn about leadership through doing volunteer community service. All this has to be completed by 10 a.m. on Monday, August 24.

And I'll do it because I am passionate about teaching, the courses I teach, Seneca and the students.  

Have I ever told you that I graduated from Seneca back in 1971?

Seneca saved my life. No kidding.

Were it not for Seneca, I don't know where I'd be today, but I doubt I'd be here at Coming Out Crazy, blissfully posting to you and responding to your comments. Engaging with you and learning so much from you. 

Back in September 1968, at the age of 19, I ventured through the brand new doors of Seneca College of Applied Arts and Technology's Newnham campus at Don Mills and Finch in north Toronto – apprehensive, raw but ready to learn.

Seneca was my last chance.

I was a broken soul. It was Seneca or bust. Get a job. But there was no job I could do and even if there was, no one would have ever hired me. I was in educational limbo and an emotional ragbag – without a shred of self-confidence.

Until then, an academic "untouchable". No teacher had ever really been able to reach me in the public school system. I was labelled a "chronic underachiever" – with untapped and untappable potential. Finally, after two failed attempts to complete Grade 13, I was forced to drop out of my academic stream in high school with only one skill – typing.

Two years earlier, I spent eight months in The Clarke Institute of Psychiatry. A year later, I discovered my diagnosis was schizophrenia. I didn't know this diagnosis was wrong. It stuck for nine years. I just buried it at the back of my miind. What else could I do.

I had blown secretarial school, too. Bored silly, I played hooky every afternoon, cut classes and spent hours reading through the fiction section at the library – until my parents caught on. 

Not my happiest hour. 

Then I read about the brand new Community Colleges of Applied Arts and Technology that were opening up in Ontario for dead-end students like me. In 1967, without Grade 13, we didn't qualify for university. Grade 12 in an academic stream gave you a ticket to nowhere. I certainly wasn't marriage material, so college looked like my last hope.

These community colleges were a revolution in Ontario's post-secondary education system. Headlines of the day hailed them as "promising for bright people less inclined to philosophizing than 'doing things' – a progressive sphere of opportunity with trailblazing training to shift students from the industrial age into the age of information."

For one thing – computers were in their infancy but there were very few people trained to use them.   

Seneca wasn't too far from where we lived and one two-year diploma program looked intriguing.

Applied Communications Media – a veritable smorgasbord of tantalizing courses including journalism, photography, TV and radio broadcasting, film production, advertising, marketing, public speaking, sociology, psychology, drama, even communications theory.

Seemed tailor-made for my histrionic nature, innate curiosity, uncanny knack of engaging people in conversations about themselves, plus my deplorable academic record.

My application was accepted and I was in. I could say the rest is history, but that's not the case. It wasn't the curriculum so much as the instructors who were able to reach out to me. Most were straight out of the working world. As enthusiastic about teaching us as we were about this new, exciting, cutting edge, avant-garde educational environment. They cared about us. Not their personal academic research. They didn't have any. We were their proteges, their educational challenges, their experiments. They wanted us to succeed as much as we did. 

I was very fragile and made sure my psychiatric history was no secret. In those days, students didn't go to guidance counsellors to have "Academic Accommodation" forms filled out to give to their teachers, like they do today. You had to advocate for yourself. So I did. 

What a difference it made. 

With these young teaching mavericks who were only a few years older than their wards, I found my niche and myself. Suddenly I could think intelligently and creatively. I had flunked English in high school because I never fit the mold, but there was no mold to fit into at Seneca. My ideas were suddenly valid and interesting. My essays scored straight A's.

We, students, were pioneers and our teachers, a brave new breed of precedent-setting post secondary educators. Mine believed in me, nurtured me and encouraged me – a revelation. I always believed I was an academic imbecile and as for my mind, the Clarke Institute shrinks had labelled mine a lost cause. 

Yet after graduating from Seneca, I trotted off to Queen's, then Ryerson, then The Toronto Sun, and now I'm at The Toronto Star and Seneca, back where I began.

I marvel at the curious synchronicity of life. 

And all its gifts. Why not consider all your gifts? Then go out and find someone to teach them to. It's not that hard. Whether it's swimming or volunteering your services somewhere. It's the teaching that's the pay-off. You'll feel like a million bucks.

Happy August.

Speak soon!

Shhhh! Wanna hear a secret?

(Editor's note: this has been modified from the original version to correct an error.)

I wear hearing aids!

It's no secret, really. I started wearing them in December 2005 after my sister Elayne turned to me at a big, noisy social function and said, "You know, you really should look into wearing hearing aids. I'm having trouble communicating with you. Why don't you go and see Jerry?" 

She was right. I had been in denial. I knew I had a problem with my hearing. I just didn't want to face it. Now, I decided to. Head on. Am I ever glad I did.

Jerry, Elayne's husband and my brother-in-law, happens to be the head of the ear, nose and throat department at Toronto's Mount Sinai Hospital. So I bit the bullet and made an appointment with him for a hearing test, which I flunked. Big time.

Turns out I had 20% of my hearing in my right ear and 70% in my left. It was so uneven, Jerry sent me for an MRI. He thought I might have an acoustic neuroma, a benign tumour that can cause hearing loss.

I didn't.

But as it happens, my maternal grandmother had a similar kind of hearing loss. She died when I was a kid and Jerry never knew her. My hearing loss is hereditary. On both sides of my family. My late father wore little inside-the-ear hearing aids and his "kid" brother, my Uncle Laurie, has had two cochlear implants.

I am very lucky. My wondrous audiologist Leslie Garbett assures me that I will never need a cochlear implant. My hearing will never get that bad. I will always have problems with clarity, but new hearing aid technology will to continue to improve my hearing. Isn't that good news?

With my very lopsided hearing, one of my hearing aids is twice the size of the other. 

All this is really no secret. (Nothing in my life is a secret, it seems. No one would ever describe me as a woman of mystery, except my husband. Maybe. He often finds me difficult to understand.) 

I've written about my hearing loss. My first story – headlined Hear! Hear! – appeared on pages 10-11 of the Summer/Fall 2007 issue of "The Sentinel," the Seneca Retirees Association magazine. It was reprinted from the Mount Sinai Hospital's Spring 2006 issue of "Your Health Report."

Another, Hearing is Believing on pages 14-16 in the Fall 2006 issue of "Network" magazine, published by the Canadian Mental Health Association (Ontario). Quite a different slant. 

What's really important is that every time I walk into a new class (or I make a speech, for that matter), I trumpet my hearing loss. I announce to my new crop of mostly very young Seneca College students that they'll have to speak up for me to hear them clearly. 

Here, we know all about "speaking up," don't we?

"Speaking Up" and "Speaking Out" is what Coming Out Crazy is all about. Advocacy. All of us are or can be advocates for change by using our voices. That's all it takes.

In class, I whip off my brilliantly coloured big, behind-the-ear Widex Inteos to show people what they look like. 

No tiny little nude-coloured hearing aids that fit neatly, almost invisibly inside your ear for me. Nope. They're not strong enough. I need the big guns, so I wear a bright, cherry-red coloured one on my right ear. And a magnificent deep turquoise-blue coloured one on my left.

Red-Right. Blue-Left. The nautical approach to hearing aid wearing. It makes them easier to tell apart, too.

I wear my red and blue hearing aids like fashion accessories. Like you may wear eyeglasses. Today, they've become fashion accessories, whether your eyesight is fine or you need corrective lenses. Either way, eyeglasses are facial fashion and these days, there's nothing particularly bothersome about needing glasses.

Unless you take Dorothy Parker's "News Item" seriously:

"Men seldom make passes
 at girls who wear glasses."

That might be "news" to you and it still may be true today, but I doubt its validity, especially if those glasses are sunglasses! Designer sunglasses – prescription or not – are mega-high fashion.

The bottom line is, whether their lenses are tinted or clear, it's all in the way you look in them and what you see or choose to see.

Furthermore, it's how you wear them. I sport vintage frames for my prescription glasses – for sun and shade, reading and distance – in wild colours or big black dramatic classic shapes and sizes. I always receive compliments. It's fun to turn a liability into an asset. 

That's my philosophy. It's another version of my favourite hobby – turning lemons into lemonade.

I apply this maxim to almost everything. Especially my unique brand of madness and my hearing loss. I'm me. I celebrate my differentness. I enjoy who I am. You can, too.

Depends on how you look at it. Your point of view. Your lens on life.

By the way, I am not deaf. I have a hearing loss. There's a huge difference.

Whenever I talk on the phone, I don't use my hearing aids. They don't work for me. I use my good ear. My iPhone has a fabulous sound system because it's also an iPod. I don't store music, but I love talking on it. It's better than any other phone I use, anywhere.

Hearing loss is like any disorder or difficulty. It's not objective but subjective. Peculiar to each individual. There are many kinds, causes and varieties of hearing losses just like there are many kinds, causes and varieties of mental health issues, disorders, difficulties, challenges. 

Madness. (Such a nice simple compact yet all-encompassing word. That's why I like it so much.) Difference. That's another way of looking at it.

Hearing loss could be viewed as difference. I don't like the word dis-ability. I've never felt dis-abled by either my mania, my hypomania or my hearing loss. I've always felt that "labels disable." So I've learned not to take the labels too seriously. I'm lucky that way, but I've worked hard at it. This fall, I enter my 50th year of psychotherapy. Dr. Bob remarked the other day that he doesn't know of any psychiatrist who's been practicing for 50 years. 

Anyway, hearing loss and psychiatric disorders or madness have several things in common. 

They're relatively invisible. They're most misunderstood and frightening to too many people – ignorance and fear go hand-in-hand with prejudice and discrimination. They're part of the human condition. Hearing loss is inevitable as we age. In our youth-obsessed culture, no wonder people deny needing them.

Consider some stats. 

• 75% of people who could potentially be helped by some form of intervention do not receive it – be it recovery-oriented, peer-support, community mental health and what clinical social worker Ron Unger likes to call the "Life Model" or some form of biomedical approach, according to Queen's University epidemiologist Dr. Heather Stuart, who has consulted with the Mental Health Commission of Canada.

• 90% of people who could potentially be helped by some form of hearing aid either will not wear them, cannot afford them or are in denial about their hearing loss, according to Krista Riko, Director of Audiology, Speech Language Pathology and Hearing Aid Dispensary Services at Mt. Sinai.

I remember telling a friend about being fitted for hearing aids in the fall of 2005. "Oh really?" she said, sounding shocked. "I thought hearing aids were only for old people." 

I quickly discovered that not only is noise-induced hearing loss affecting younger people these days because they crank up the volume of the music they listen to, but hearing loss has long been deleteriously stereotyped. Linked inextricably to an image best summed up in the insensitive, erroneous and archaic phrase "deaf and dumb." 

Not unlike the phrase "mentally ill", an adjectival phrase I never use. I hate it. It colours a whole person and we are all so complex. So multi-faceted. We may have challenges, difficulties – who doesn't? But, we are all human beings first. People first. Individuals first. And the way we use language colours the way we perceive the world. That's why I try to be so careful.

I know so many people my age wearing hearing aids and desperately trying to hide them. Most musicians and DJs have serious hearing loss. Famous people, too. 

I don't hide mine. What's the point?

Hearing aids are just that - aids. If you don't let people know you have a hearing loss, they won't take the time to slow down or speak up. I tell people that. Even though I'm a brilliant lip reader, when someone takes the time to accommodate my hearing loss a little, it beats my saying something inane or insane-sounding because I haven't been able to aurally process it correctly. It's terribly isolating when your hearing loss shuts out conversation.

It's often embarrassing, although nothing embarrasses me anymore. I just make a joke of it. I whip out my trusty little Widex remote control and adjust the volume controls of my hearing aids and the mode in which they process sound.

"I'm a bionic woman," I quip. Dazzling people with my smile. Humour is a great way to diffuse embarrassment. Most people grow curious and start asking questions. Opening their minds as a dialogue begins. Then I have an opportunity to do a little on-the-spot advocacy. One person at a time. That's how social change happens.

That's what we're doing here. You and I. Social change. Together. 

Thanks for listening. Let me know your thoughts and feelings about all this. I'm curious. In the comments, please. That way we can all join the conversation. No one will be left out.

Have a lovely meantime and a sensational weekend.

Speak soon!

On compassion and empathy ...

No excellent soul is exempt from a mixture of madness. No great genius has ever existed without some touch of madness. – Aristotle

You're remarkable, you know that? Really incredible! I love you.

Last Friday, I had a bit of a meltdown here. Writing about Mad Pride Week 2009 plus the madness of my life right now, got the better of me. Over the weekend, I slept. That's the foolproof antidote for my madness. Meanwhile, several comments came to me here from Katharine and from my buddies on Facebook. In myriad ways, you bolstered me. You knew how I was feeling. You were with me. 

This morning, I awoke to discover the most beautiful gift from Carolyn, who often comments here. 

She knew instinctively how overwhelmed I was feeling and shared some charming and very wise advice of her mother's.

"A plate is wide, and you can pile it quite tall, but eventually you have to eat what you put on it," Carolyn wrote. "But when you put something on your plate remember for whom you are eating it. Make sure you save room for dessert – just for you, just for enjoyment. If you don't have room for dessert, you put too much food on your plate to start. Always save room for dessert."

She's right. Lately, I've been skipping desserts – just gorging on the main courses. The serious problems some of you share with me here – by email directly to me – the main courses of your lives become main courses for me. I take them seriously – to heart and to mind. I digest them and dwell on them. They upset me because I can identify with you and because I want to help.

I am, however, no therapist. 

Just a fellow traveller on my recovery road, like you. With my own fine madness. We all have "a fine madness" of our own – all of us! Forget any "psychiatric" diagnostic label. We all struggle with ourselves, with our inner lives and dreams and desires, with who we are and what we want out of life, with who we want to be! With our realities and fantasies.

The only people for me are the mad ones, the ones who are mad to live, mad to talk, mad to be saved, desirous of everything at the same time, the ones who never yawn or say a commonplace thing, but burn, burn, burn like fabulous yellow roman candles exploding like spiders across the skies... – Jack Kerouac. A gift from my friend Gianna.

It's understandable that with anything that can be classed as "crazy" – emotional trauma, mental illnesses, disorders, disturbances and distresses, with the dualism of mind and body (non-existent, if you ask me – we are whole), with health and well-being, with madness – for no reason, there is a human history of humiliation and disgrace, even guilt. Why? Difference. Perhaps being too different. Being different isn't easy. I think it takes courage and often people think it's madness when it's not. There's safety in numbers. In conformity. Being different is what changes the world. Pioneers are dreamers, lots of people think they're mad, too! But where would we be without the inventors, the explorers, the Mad Men and Women.

Madness goes back to Biblical times. Madness is written on human history from ancient times. Madness and its social background in the Old Testament. 

Today, when everyone wants and needs to fit in, it's natural, understandable, to want to speak in whispers about these mad issues. To talk quietly, not out in the open or in the comments to this blog. To send me personal emails, to spill your stories and demand anonymity. Perhaps, here, at Coming Out Crazy, you've found the first perfectly safe place to let all your frustrations and fears come out. To me. Many of you have expressed that very sentiment many times. You feel safe, here. And you are. Entirely and completely. I am a journalist and I protect my sources. Nothing you write to me privately will ever be repeated.

It's understandable that you feel you want to tell me your whole life history of emotional anguish and mental distress, or the history of your family's struggles and sufferings with mental illnesses or madness. It's natural not to be able to see the light of hope. The act of writing an email to me is therapeutic, healing, especially if you've never shared it with anyone else. It's like writing in a diary, reflecting, journalizing. Getting it all out. Unburdening yourself. It feels good.

With one major difference. I read your stories and often, almost always, implicitly or explicitly, you ask for advice and request a reaction. Some feedback. You share your burdens with me. I begin to shoulder them with you.

It is, however, unrealistic to expect me to be your personal therapist. I can listen to you and read your missives, and at the same time, feel for you. Yet, I cannot offer advice. Good therapists don't give advice. They help you to find your own path, hear your own voice, discover your own answers. That's good therapy. With time and work, you can begin to peel your own onion and explore the layers of your life and psyche. And learn more about who you are and why.

You can learn to accept yourself. To like your uniqueness!

So, I am going to continue to read your emails to me, but at the same time, I'm going to continue to implore you to share your concerns and your life stories and your wisdom and your humanity with our "Coming Out Crazy" community. That's what we're all about. Community. Shared goals. Shared concerns. Shared solutions for the greater good.

You are not alone. We're all human. We're all equal. Not the same, but equal. No one is perfect. That's what the word "human" means.

And there is hope in sharing. In learning about each other. In discovering that what you fear about yourself is not unlike what all us fear or have feared ... and have learned to accept about ourselves. Even like about ourselves.

That's compassion. Better still, empathy. A word I prefer. It means we've walked in each other's shoes or each other's footprints on the sand.

I have lots of quirks. Weird quirks. I get excited and raise my voice. Sounds like I'm yelling, but I'm really just emphasizing. (That's also because I have a serious hearing loss and wear hearing aids. I cannot always gauge my own volume because I can't hear myself.) Ask my darling soul mate husband Marty about my quirks. He lives with me and loves me like I've never been loved before. (And I'll tell you a secret. He has lots of quirks of his own! And I love them as much as I love him. They're all part of his very own uniqueness. They make him the man he is! I'm not interested in perfection. I think it would be a bore.)

Forgive me for becoming unhinged a bit last week. Sometimes the world can be a bit too much for me. I'm terribly sensitive. Always have been. That's my nature. But I can recover by cuddling my little dogs and Marty. And by taking naps in the afternoon.

Let me end with another gift, again from dear Gianna.

You're only given a little spark of madness. You mustn't lose it." – Robin Williams

More on "Mad Pride" and "Knowing Your Rights Day" ...

Happy Mad Pride Day!

July 14 – A Universal Day of Liberation from old stereotypical thinking about mental health and mental illnesses. To challenge mental health discrimination and prejudice. To educate and enlighten and declare ourselves. To celebrate who we are, educate ourselves and others and remember our history. To break out of denial. To stop being afraid. To end our silence.

To be proud.

Wow, is "Mad Pride" ever a red flag issue, though? At least on this continent.  

Not in England and other countries, where "madness" is an increasingly acceptable word to describe having a diagnosis of a psychiatric or "mental illness" and that's very significant. 

Just click onto the comments to my last post, In the mood for Mad Pride 2009 to see an intriguing discussion that took place over the weekend. Not quite a repeat of what happened in the comments to my post about 2008 Mad Pride Week. That really upset people. Big time. 

So, we're making progress. One step at a time.

This morning, I received a Facebook invitation from Mary Ellen Copeland of the Copeland Center for Wellness and Recovery to join her group called "Mental Health Recovery and WRAP© – Wellness Recovery Action Plan". Copeland is one of the leaders in the U.S. mental health recovery movement and she has a remarkable recovery story, herself. 

I met the Stephen Pocklington at a conference last year and posted all about WRAP. These eight week programs offered in Toronto and all over the U.S. Worth considering if you want to add more tools to help you with your recovery. It works!

There is a profound relationship between Mad Pride and Mental Health Recovery. As I see it, they go hand in hand, even if you choose not to describe yourself as "mad" and feel more comfortable with the term "mental illness." Whatever works for you!

My friend Tufts University psychiatrist Ron Pies, a valued presence here at "Coming Out Crazy",  suggests that being very specific is probably most helpful and healthy. 

Here's what he says: "As for how people diagnosed with so-called mental disorders ought to refer to their conditions, I think its often best to name the specific condition, such as 'I have an anxiety disorder' or 'I have bouts of depressions.'"

Everyone is different and should find their own "comfort zone" – and it's doesn't have to be carved in stone. You may find yourself changing and evolving. "Coming Out Crazy" is a process. It can take years.

These days, I don't run around town saying seriously that "I'm utterly mad." (Although, I do less seriously, in certain situations, among friends and people who know me.) What I usually say is that "I'm in recovery from a unipolar mood disorder. I'm not bipolar. I have never been clinically depressed. I get high. Very high. Not happy. Insane, crazy, nuts, mad!" 

I feel comfortable making a little fun of myself and playing with words and I can pull it off. I've been out all my life. I've had years of practice. It wasn't as easy when I was much younger, as it is now.

It depends on context, of course. Where you are. Who you're with. We're all different. I'll often add that, "This is a very rare, very serious mood disorder. I've been hospitalized about 20 times for mania. I get psychotic. It's no fun. Trust me! But I haven't had a major manic episode since 1988." 

When I talk about myself that way, more often than not, people are comfortable asking me questions. That's when I can self-advocate and educate. It's a win-win-win! That's how you can bring about change, one person at a time. It works. 

That's my brand of Mad Pride. Why don't you try to think about yours. Everyone feels differently. How do you describe yourself and feel about yourself? Why not comment about your brand of Mad Pride and if you don't have one, pretend you do. Put words to your thoughts. Brainstorm. Add your thoughts and comment on them, here.

After all, this is Mad Pride Week. It's the one week in the year when Madness is on a lot of minds. Have some fun with it. Think about some positives. Break out. Be a little optimistic. Cockeyed Optimistic! Think outside your box! Forget about the old resonating ideas for a minute. Just be free. Take a deep breath and for a moment, remember that you are you! There's no one on earth like you. Never has been and never will be. You have special gifts. Try to turn your thinking around. 

Be proud of where you are right now. If you're here, you're in a good, safe place. And we're all here together with you!

One last word – five really important words, actually – before I list highlight tomorrow's Mad Pride Week activities. 

These are the five key concepts for Mental Health Recovery according to Mary Anne Copeland.

• Hope

• Personal Responsibility

• Education

• Self Advocacy

• Support

Meditate about them, too.

Now them, tomorrow, Wednesday July 15th, is "Know Your Rights" Day during Toronto's Mad Pride Week. 

Here's what's on tap. Click here for an overview and details about location.

From 11 a.m. to 12 noon: The Dream Team, a group of "consumer survivors" who advocate for safe, secure and affordable house for people living with mental health and addiction issues will share their stories. Over the last year The Dream Team worked with various groups and communities across Ontario to explore the issue of discriminatory zoning. In this presentation members of the Dream Team will illustrate the concept of discriminatory zoning and the impact on people with mental health and addiction issues. 


At 12 noon to 12:15 p.m. The Parkdale Activity Recreation Centre or PARC Ambassadors Program is a remarkable grassroots community success story. This Parkdale Community consultation program engages, informs and consults with residents and stakeholders in the community in relation to their building development at Edmond Place. Nine Ambassadors, PARC Members, receive remuneration for their peer and member driven work, which incorporates and builds on the principles and values of the recovery model and PARC’s Mission – PARC – A Place Where People Rebuild Their Lives. 

When the Parkdale Activity Recreation Centre acquired Edmond Place from the City of Toronto to develop affordable, social housing for marginalized persons in our community there was extreme opposition to PARC by residents and stakeholders in Parkdale. Since the PARC Ambassadors Program's inception in September 2007 this inner-city community has evolved from a NIMBY (Not In My Back Yard) neighbourhood to a YIMBY (Yes In My Back Yard) neighbourhood. 

The PARC Ambassadors Program is proof positive that through community organizing and public relations, marginalized people have a commitment to their community. They have all the necessary attributes and capabilities to be productive, to contribute to their neighbourhood and to society. They can a do live a healthy, meaningful and fulfilling life. This is a powerful snapshot of recovery.

PARC Ambassadors will discuss their work at this presentation 

12:15 noon to 1 p.m. Lunch – light refreshments generously provided by The Raging Spoon

*RSVP: http://www.madpridetoronto@yahoo.ca

Special lunch time presentations featuring Laughter Yoga with Salimah Kassim-Lakha, and more!

1 p.m. – 2 p.m. – Presentation – Legal Jeopardy by Parkdale Community Legal Services (PCLS)

2 p.m. to  3 p.m. – David Carmichael

QUESTIONS, QUESTIONS, QUESTIONS

When it comes to treating your own mental illnesses, we often assume that doctors and other mental heal professionals always know what’s best. During this presentation, David will raise a few issues about scientific drug research and help you understand, based on his own experience recovering from major depression, how important it is for people living with mental illnesses to take responsibility for their own recovery and rehabilitation by asking their doctors and mental health workers questions, questions and more questions, and by becoming regularly physically active. 

David holds a masters degree in physical education and is the former director of national projects at ParticipACTION. After experiencing his first major depression in 2003 at the age of 45 and a relapse in 2004, he tragically learned the importance of good mental health and does not assume that doctors always know what’s best.

A Q & A session will follow.

3 p.m. – 4 p.m. Street Nurse Beth Pelton 

Beth Pelton is a registered nurse currently working with Street Health Community Nursing. Most of her nursing work has been in the community, and with people living with cancer. Her experiences have included working in medical and geriatric and psychiatric nursing, practising from a Harm Reduction Philosophy.

Mad Pride can help you on your Recovery journey. Go for it!

In the mood for Mad Pride 2009...

Since I started writing "Coming Out Crazy" 15 months ago, I've been on the steepest learning curve of my life. 

At least twice a week I sit down here facing a blank screen on my trusty iMac to muse and investigate issues around mental health and wellness that matter deeply to me and I hope to you, too. Particularly Recovery. Plus any relevant news. These days, there's lots of it.

Your comments are my only barometer, my only way know if I'm plucking at a few of your psychic chords. I live for your reactions, to hear your voices, to learn more about you and this community we've created.

Today, I am launching a short series on Mad Pride, which means many different things to many different people. I believe that Mad Pride is analogous to Recovery because they both share one very crucial quality. Hope.

Perhaps you'll think about what Mad Pride means to you. If you want to know the truth, I'm glad to be mad. I know I'm not normal and I wouldn't want to be. I'd rather be Next to Normal. I think everyone is. No one's normal. 

Being different and proud of it affords me enormous freedom, though I've worked hard to get here. Now, thanks to my psychiatrist Dr. Bob and his brand of talking therapy, I don't ever have to dare to be different. I simply am different. I like being different. That's part of my madness. I'm fine with it.

Some of you don't like the term "mad" or "madness" but perhaps you'll change your mind by next week at this time.

Anyway, here goes. A few annotated highlights for the first day or two of Mad Pride Week in Toronto.

• Mayor David Miller has once again officially proclaimed next week, beginning this Monday, July 13 and ending on Sunday, July 19 to be Mad Pride Week 2009. 

Incidentally, according to a PsychCentral 2007 post on its World of Psychology blog, July is considered Mad Pride Month.

And for all the folks of MindFreedom International, Mad Pride is central to its ethos as a "movement that celebrates the human rights and spectacular culture of people considered very different by our society."

For this "non profit organization that unites 100 sponsors and affiliate grassroots groups with thousands of individual members to win human rights" and alternatives for people labelled with psychiatric diagnoses, Mad Pride is a constant campaign – one of many.

NOTE: This year, due to the City Worker Strike, many of Toronto's week long Mad Pride Week Activities will take place at the May Robinson Auditorium at 20 West Lodge Avenue. That's one block east of Landsdowne and one block north of Queen Street. 

This year, Mad Pride Toronto is up to the minute electronically.You can follow our local Mad Pride Toronto events by watching them on YouTube. Or read the Mad Pride Toronto Blog. Or by following on Facebook.

Mad Pride is a cultural festival of arts, entertainment and heritage activities. Several activities honour and commemorate the contributions of men and women who lived, worked, struggled and died in the former Toronto Hospital for the Insane which was located at 999 Queen Street West.

Here are a few events that intrigue me:

• At 6 p.m. on Monday, July 13, you won't want to miss Geoffrey Reaume's unique historical guided tour of The Patient Built Wall, constructed in 1860 by unpaid patient labourers in what was then known as the Provincial Lunatic Asylum. The Centre for Addiction and Mental Health (CAMH) now stands there. Patients lived and died building that wall and Reaume, author of the landmark history Remembrance of Patients Past – Patient Life at the Toronto Hospital for the Insane, 1870-1940 is well-acquainted with their stories. Soft-spoken, thoughtful and profoundly knowledgeable, Reaume teaches a course in Mad People's History at York University, where he is an Associate Professor. He is also co-founder of the Psychiatric Survivor Archives of Toronto.

• At 8:30 p.m. a Candlelight Memorial will take place at the wall.

• Tuesday, July 14, is Mad Pride Day globally. It's celebrated from the United Kingdom to the United States and Canada and from Australia and New Zealand to South Africa. Celebrations vary, but often Mad Pride is an opportunity to challenge mental health prejudices, discrimination and negative stereotyping by raising awareness through community activities and the arts. Music, theatre, poetry, art and literature can transcend so many barriers, especially the unnecessary ones perpetuated by societal and media ignorance and fear.

• It's no coincidence that July 14th is also Bastille Day, the French National Holiday marking the anniversary of the storming of this Paris prison in 1789 that started the French Revolution. It's a universal symbol of liberation and, according to Mindfreedom, "when the Bastille was stormed, two prisoners with psychiatric labels being detained there for that reason were freed."

(I wonder what those psychiatric labels were, back in 1789, before there were psychiatrists.)

• The Honourable David C. Onley, Lieutenant Governor of Ontario, Ontario Human Rights Chief Commissioner Barbara Hall and MPP Cheri Di Novo will be attending the Opening Ceremonies at 11 a.m. on Tuesday morning to kick off Mad Pride Day.

• Following that, a virtual variety show of entertainment, song, poetry and readings is planned.

• At 1 p.m., York University's Geoffrey Reaume will be back to present an intriguing, no doubt healing and historically provocative program called "Hugging Our History: Why Psychiatric Survivors Need to 'Own' our Mad Past." This is a one-hour presentation I'm going to try to see.

• Wednesday, July 15th is "Know Your Rights Day" and features a presentation by The Dream Team – consumer survivors who advocate for more safe, secure and affordable supportive housing for people living with mental health and addiction issues. 

Next week, I'll continue with my Mad Pride series and some surprising information about how Toronto has led the world in the Mad Pride Movement.

The original organizers of Toronto's first "Mad Pride Day" was almost called "Crazy Day" back in 1993. Instead, they decided to call their event Psychiatric Survivor Day." But I'll leave the rest of that story until next week.

Finally, to get yourself into a "Mad Pride" mood, why not download some utterly amazing interviews on Madness Radio – "Voices and Visions from Outside Mental Health." 

Have a peek.

More of that next week, too. Have a "Truly, Madly, Deeply" sensational weekend.

Hugs,

sln

Musings on schizophrenia...

On Monday, I had lunch with an old friend. It all started because of last week's newsmaking announcement about so-called new findings about the genetics of schizophrenia.

I sent my friend a piece in The New York Times by Nicholas Wade which seemed to me to put a sober perspective on all the hoopla that followed. Well worth reading. Rather than a major breakthrough – for nothing would delight psychiatric researchers more than finding a cause for a varied group of disorders described as schizophrenia – what was reported was a big deal about information that's been known for years.  At best, a tiny little piece of the puzzle was confirmed by three new studies. 

The mysterious causes of schizophrenia are linked to thousands of genes, not just a few. There's lots of work still to be done.

It was this study that reconnected me to my friend. He often remarks that the word "schizophrenia" really describes psychosis – or, to be more precise, a number of different psychosis with several widely varying classes of symptoms.

At 89 and utterly brilliant, he and I met while I was writing for The Toronto Sun on one of my extended forays into psychiatric research and we remain buddies, although I do not see him often enough.

Yesterday, we wandered along College Street until we could locate a Japanese restaurant to our mutual liking and had an enlightening and, as always, fascinating chat.

He is a rare bird in the realm of psychiatry. One of the only people I know who launched his career as a psychiatric social worker in 1948 – the year I was born – after graduating from the London School of Economics in Psychiatric Social Work and studying clinical psychiatry with William Mayer-Gross at the Crichton Royal Hospital in Dumfries, Scotland. Dr. Mayer-Gross authored a seminal text called Clinical Psychiatry published in 1954, before the advent of the earliest antipsychotic medications.

After finishing his training with Dr. Mayer-Gross at the Crichton Royal Hospital, my friend moved to Canada to become director of social work at the former Whitby Psychiatric Hospital. Then he was named advisor in social work in the mental health branch of the Toronto Department of Health before taking the post of Associate Director of Psychiatry at the Toronto Psychiatric Hospital, which became the Clarke Institute of Psychiatry in 1964 and part of the Centre for Addiction and Mental Health (CAMH) in 1998. He finished his career at McMaster University as a research scientist, Professor of Social Work and Associate Professor of Psychiatry before retiring in 1990. 

His professional career in psychiatry spans 42 years from the pre-Chlorpromazine Age to the age of the atypical antipsychotics. He is one of the most knowledgeable and reasoned professionals I have ever known and this week, schizophrenia was on our minds.

My very first psychiatric diagnosis was schizophrenia. A rather dotty and dusty old-maid psychiatrist named Margaret McQuaid gave me that diagnosis back in 1960 when I was barely into my teens. I didn't know it then, but ah, those labels. How they stick!

About six years later, I found out about it in a brutal way. Another mad shrink at The Clarke Institute of Psychiatry – I cannot name him as he's still kicking around – decided he had cured me, so one day, he put me in a glassed-in cubicle on the eighth floor and handed me my chart to read.

There, in correspondence and other documentation, I discovered I had schizophrenia and then, a few years later, the word "catatonic" was added. Scary words for an 18-year-old to absorb. I remember riding home on the subway shuddering. I ran up to my room where my 1966 edition of the Random House Dictionary of the English Language sat above my desk and looked those two words up. 

• "Schizophrenia – a psychosis marked by withdrawn, bizarre and somewhat delusional behaviour and by intellectual and emotional deterioration. Also called dementia praecox, which means premature dementia."

• "Catatonia – a syndrome seen most frequently in schizophrenia, with muscular rigidity and mental stupor."

I didn't recognize myself remotely. Why were these words applied to me, I remember wondering. Can you understand why I detest these psychiatric labels and why language is so important to me? Yet, for the next seven years, through Seneca College and Queen's University, in the back of my mind, that diagnosis was there, though never in my entire life have I ever been "withdrawn." 

In 1975, that diagnosis was changed to manic depression.

"You know, this is the 100th anniversary of the word schizophrenia," my friend announced as we perused the $5.99 specials. His first statement has been well documented. According to an article in the American Journal of Psychiatry Paul Eugen Bleuler and the Birth of Schizophrenia, on April 24, 1908, Swiss psychiatrist Bleuler first coined the term "schizophrenia" at a meeting of the German Psychiatric Association in Berlin – as opposed to the earlier label, dementia praecox.

Without recounting all this history of labels, let's just say that the term schizophrenia simplified what had been a grab-bag of other labels. Too bad. I've always thought that huge catch-all categories are more dehumanizing than specific ones.

According to former Boston Globe investigative reporter Robert Whitaker, in his book Mad in America – Bad Science, Bad Medicine, and the Enduring Mistreatment of the Mentally Ill, "Throughout the nineteenth century, physicians had conjured up a wild profusion of insanity types. Medical texts told of such ailments as "old maid's insanity," "erotomania," "masturbatory psychosis," "pauperism insanity," and "chronic delusional disorder."

Whitaker adds, "There was no rhyme or reason for these terms, and they provided little insight into what the future held for the patient." German psychiatrist Emil Kraepelin classified them into two streams – manic depression for those with psychosis and emotional disturbances, and dementia praecox for those with lack of emotion. The second group were given a less hopeful prognosis.

In 1908, Eugen Bleuler came up with the term "schizophrenia" which he viewed as a milder form of dementia praecox, according to my friend.   

Bleuler wrote a paper about his new term "schizophrenia" in 1911, so my friend considers 1909 – a point in between – as the true birth of the schizophrenia. 

Still, not much is really known about its causes today – probably because there are so many. I seriously doubt any one cause will ever be discovered. 

My friend announced that back in the 1940s and 1950s, close to 50% of patients who were diagnosed with schizophrenia went into spontaneous remission – complete recovery – with humane care and no medication. There were no antipsychotics back then.

"The prospects of lasting spontaneous remission are greatest during the first two years of illness," my friend quoted in an email from page 267 of Clinical Psychiatry (Cassell, London, 1954), co-authored by Wilhelm Mayer-Gross, Slater and Roth. "After five years of continuous illness they become negligible. If a series of patients whose illness have lasted a year are followed up, about half are found eventually to remit; if the illness lasts two years, the proportion is still about 45%. Thereafter it quickly declines."

My friend notes that with "effective community support, many former patients with longstanding schizophrenia were able to live satisfactory lives without or later with medication." 

Having a diagnosis of schizophrenia is not an easy one to live with and today, what we know about psychosis, no matter what you call it, is that early intervention is the key – especially for young people.

This also explains why so many leaders in the modern recovery movement – psychologist Patricia Deegan, Dr. Daniel Fisher and British psychologist Rufus May are three examples of countless people who have fully recovered from serious cases of schizophrenia and now live meaningful lives without medication. Others have succeeded brilliantly with psychoanalysis and medication, like law professor Elyn R. Saks, PhD. 

The question is, what about the other 50% who don't spontaneously remit? Why? And what about the standard contemporary biomedical approach that involves prescriptions of newer, very powerful atypical antipsychotics? Do they promote spontaneous and permanent remission? Or are they harmful?

A great deal in psychiatry has changed in the last 40 or 50 years, but not a great deal more is known about the causes of schizophrenia. Genetic testing and brain imaging will be studied in about 100 people with schizophrenia, bipolar disorders and depression at CAMH, the first hospital in the world to explore these newer avenues of therapy. 

We should be able to use all possible tools available for recovery. And recovery should be the goal. Not a belief that this condition is chronic. 

The word "schizophrenia" carries enormous baggage. The media hasn't helped. But, I think it's interesting to learn from the past. If many people diagnosed with schizophrenia, experiencing abnormalities in perception, hallucinations, delusions and disorganized thinking have fully recovered with humane support and care – that, to me is a reason for hope. And an approach to be seriously considered. Not isolation, hospitalization, drugging and other inhumane treatments. Instead, inclusion, respect, education, accommodation, empowerment and nurturing. Give people a chance!

Schizophrenia is probably not chronic brain disease, as so many people would have you believe. It involves the mind and the soul, the whole of a human being. There is no scientific proof that it's a disease of the brain.

Trauma can play a part in the development of the symptoms that suggest a diagnosis of schizophrenia, as can genetics, intrauterine factors, early childhood environment, psychology, neurobiology, social and cultural influences – even drug abuse.

Until we have more information, the jury is out and anything is possible, including recovery! It's time to rethink our knee-jerk reactions to this condition. See it not just a medical context but in an historical context. In a post-psychiatric context, too, and in the context of the recovery movement. 

Madness, a word I prefer to all the others, has many meanings. Love. Anger. Insanity. 

Let's open our minds to all them.

A Mad Miscellany

Hello everyone!

I am pleased to announce that I'm feeling much better. In fact, totally better. After five consecutive weeks of weekly therapy sessions with Dr. Bob and some time, reflection and a lot of "processing," I seem to have weathered the bumpy patch in my recovery journey and arrived at a better place – a more peaceful place. More self-accepting.

When I left his office on Monday, I felt light and buoyant. I didn't book another appointment for next week, but rather next month. I didn't make any notes and didn't have any homework. This latest layer of the onion has successfully peeled away. I've shed a few tears and now I won't be seeing him until the end of July!

The passage of time was very healing. And YOU had a lot to do with my progress, too. More than you know. I am very grateful for all your supportive and empathetic messages and comments. Though I was feeling very isolated and fragile, I knew I wasn't alone. This doesn't happen to me very often. Most of the time I have to grapple with the manic end of the spectrum. 

So, now I have a renewed sense of purpose. And a plan. No matter what happens, I am determined to carry on and succeed and I'm looking forward to either exigency – and prepared. 

Today, I'm simply going to share a miscellany of thoughts with you. A little grab-bag of ideas. A gallimaufry, if you will. I hope you don't mind.

1. The television show Mental is off my list. We are no longer recording it and I'm no longer interested in wasting my time watching it. Last week's episode, quite frankly, was so outlandish, I fell asleep. About a young boy who was obsessed with a video game show. Too silly for words. Too bad. It would be lovely to see a network television show, or better still, something on HBO without commercials, that focused intelligently on emotional and mental health difficulties. This one isn't it. 

2. I have been asked to participate or be interviewed for a documentary film called "The Bipolar Project" – that's the working title. I'm hesitating, though. I have done these filmed interviews before and I've found you're at the mercy of the filmmakers and their own visions and biases. They can make you look and sound like anything they want. Editing can distort any message.

Gianna Kali who has an excellent bipolar blog called Beyond Meds had a similar experience recently with 20/20 and she declined as well. For similar reasons.

My husband, a professional screenwriter and producer doesn't agree. That's okay. We can agree to disagree. Quite frankly, I'm not that anxious to "get my message out" when it will be in the hands of a couple of Los Angeles documentary filmmakers with whom I am not familiar and may not be "my message." Especially as I am anti-label, as you all know so well by now.

So, I won't be headed for stardom this time.:-) Also, and this is really the clincher. I am evolving all the time. If I say something on film in July, chances are I might have moved on by the film is completed and released in two years. You never know.

This blog has seen an evolution in my ideas. I think that's healthy. I welcome change and I'm always learning new things and exposing myself to new ideas and perspectives.

3. And speaking of labels, Mad Pride Week in Toronto is from July 13 to July 19, 2009 and it begins at 3 p.m. on Monday, July 13 with a DSM Bonfire:

According to the Diagnostic and Statistical Manual of Mental Disorders or DSM "we are mentally ill if we are addicted to coffee – Caffeine-Related Disorders, page 231. Having struggles reading – Reading Disorders, page 51. If we don't think we are crazy then we are suffering from Non-Compliance with Treatment, page 739.

Who else is there?

"Enough with the labels, bring on the marshmallows!" The organizers of this years Mad Pride Week invite you to a symbolic bonfire "where we burn labels and all words that limit who we are as human beings and celebrate our abilities."

Although there will be no real fire, there will be hot chocolate and a sing-along.

Have a look at all the Mad Pride Day Toronto activities planned for that week. Subscribe to the Mad Pride Toronto Blog and stay in touch with people through Facebook by searching for Mad Pride Day Toronto.

I'll keep you posted here, with notices of different activities during that week. Just mark your calendar! Stay tuned. 

Consider using the word "madness" and "mad"... it's quite common in Britain. Lately, I've been listening to Madness Radio – voices and visions from outside mental health. Have a look and a listen. You might find these weekly interviews by Will Hall, who has a diagnosis of schizophrenia and is in recovery, utterly fascinating. Gianna Kali was interviewed in February about her experiences coming off 30 different psychiatric drugs and last week's interview with Jacqui Dillon director of the England's Hearing Voices Network will open your eyes to ears to new perspectives and alternatives to traditional ideas about this challenging issue.

It will open your minds to new realities.

New possibilities.

Take care. And stay cool. Summer has finally arrived. Enjoy!