Happy Anniversary, "Coming Out Crazy"...

We're two years old today. I cannot believe it and what an education writing this blog has been for me.

IN THE BEGINNING...

On April 9, 2008, I posted my first blog, called Welcome to Coming Out Crazy – and we weren't even live and on line, right at the beginning. (Now everything I've ever posted is archived and online.)

I was just beginning to toy with my own blog and didn't really have a clue about what blogging and the blogosphere was all about, when Brandie Weikle sent me an email asking me if I'd be interested in blogging about mental health for a then-new website The Toronto Star was building called Healthzone.ca.

I just reread that opening post. When I think back to what I thought I would be doing, I'm shocked at how much I've learned and how innocent I was.

As I mentioned, we were not interactive, like we are now. Any feedback came via email that went either to Brandie or directly to me. Our correspondence was strictly one-on-one and a ton of work. 

POSTS FROM THE FIRST FEW MONTHS AND OUR FIRST AWARD

At the beginning, it was just a trickle, but the initial reactions were positive and I kept plodding on writing about some of the topics I'm passionate about – like labeling, language, lessons we can learn from abroad, Recovery and Denial, mad pride, madness and more, "framing" or "the 'S' word", ECT and other current therapies, mental health in the workplace and suicide. 

I shared stories, like the challenges of living with my pregnant Dandie Dinmont terrier bitch, Lucy – who is not pregnant again, I'm sad to report. And this one I discovered on www.TED.com by Sir Ken Robinson. I called it Shall We Dance. 

On October 22, 2008, I turned 60 and that morning, we won our first award as one of the Best Bipolar Blog on the Web Award! We won another in 2009.

Most of all, I was learning how much I didn't know and how much more I wanted to know. I made some enemies, but more friends. I began to familiarize myself with the other mental health bloggers on the Internet – and there are millions of them all over the world – but mainly from the U.S., in England and Canada. 

I quickly discovered that there were very few newspaper mental health bloggers at that time – besides Liz Spikol in Philadelphia, who writes about her bipolar disorder. I've linked you to other bloggers who have intriguing ideas to share. The more we can share, the more we can learn from each other.

In Canada, to the best of my knowledge, I'm still the only person writing regularly and candidly in a major daily about my personal mental health issues, my recovery, and mental health and wellness in general. If not, please let me know who you are, where you are and join our conversation.

I wrote about one of the most remarkable psychiatrists I've ever known, about schizophrenia, about depression, about my teaching, how I came out in class to my students about my mental health issues, about my hearing loss, about how friendship heals, about "living out loud", about my ongoing battle with food and my moods, about letting go, about stress and about hope.

And I wrote about you. 

And Angela and her electroconvulsive therapy, which will be finishing very soon. And I'll be reporting on that, rest assured. Will she need maintenance ECT? I'll keep you informed.

Yet, I've just scratched the surface. There's so much more.

I answered your questions, or tried to, and I explored some of the issues in your comments. I've come to care about you, became acquainted personally with some of you, and even met and befriended some of you.

Now, because of this blog, I have new friends and I'm so grateful to you. This is a dialogue. I thrive on your input. Yes. I live for your comments.

I'VE LEARNED SO MUCH FROM YOU...

I learned so much about you and from you. 

How much you need to share, to speak about your personal pain, your traumas and psychic scars, your stresses and anxieties, your feelings of abandonment and loneliness, your fears and frustrations trying to find compassionate listeners who will help you develop the tools for living meaningfully, instead of or in addition to dispensing medications.

And I've made lots of mistakes. One worked out wonderfully. As a result, I met psychiatrist Ron Pies, a professor of psychiatry at Boston's Tufts University and the S.U.N.Y. Upstate Medical University in Albany, N.Y. He has generously helped me with much of my research and become our resident expert and my friend. 

From the beginning, and especially after we moved to Typepad in June of 2008, I began to dream of creating, here, a safe and supportive virtual community, where you can share your stories, perspectives, complaints and opinions openly with me and each other.

And once I began linking, I began to love sharing all I was learning with you, too, by giving you sources and seeking out the best references I can find for you. Dr. Pies calls me a "public educator" but we're all educating each other, contributing to a body of knowledge here that can help challenge discrimination and prejudice with information and discussion. Openness. Coming out and staying out comfortably. 

Changing the landscape about mental health. Though change doesn't come easily and there's always resistance. We must keep trying.

THANKS FOR THE MEMORIES

For the last few hours, I've been traveling back, touring the archives of this blog. I'm amazed at how much territory we've covered. 

And how much more we must cover.

As a little anniversary gift to you, the links above will take you back, too. To some posts that were never on line and are now available as well as others you may remember.

So, I'm wishing you a Happy Anniversary, too. Because without you, I simply couldn't do what I do.

Finally, I want to give special thanks to my editor Brandie Weikle. She not only edits me and all of HealthZone brilliantly, but also ParentCentral, where she writes a charming and informative blog about raising her two adorable young sons, Cameron and Alister. Their cute kid quotes of the day are guaranteed to give you a lift.

Her guidance is invaluable. She works like a trojan and she is endlessly patient with me and my occasional emotional outbursts. Brandie, you're a dream of an editor. I adore you!

I want to say a special thanks to the powers-that-be, and all the editors and moderators at thestar.com for having the wisdom and courage to launch a mental health blog. It's crucially important to give all health issues fair treatment, time and space ~ physical and emotional and mental. It's validating for us and empowering for everyone touched directly or indirectly by mental health issues. And we're all touched in some way, somehow. No one is immune.

With heartfelt thanks and gratitude to all of you.

So far, it's been a fascinating ride – not without a few bumps, mind you. I learn lots from those bumps.

So, here's to continuing on our journey of discovery and self-discovery together for another year ~ in health.

Speak soon.

Hugs to you all!

Angela's news and "Words on the Wall"...

"I'm confused," Angela said at the outset of our conversation last evening at 7:56 p.m. "Really confused."

She sounded groggy and sluggish. I hadn't heard quite this sound before. Her affect wasn't flat. She did not sound in the least depressed, but she didn't have the bounce in her voice I have come to expect lately. 

Angela had her third bilateral electroconvulsive therapy treatment 12 hours earlier – her 15th over the last eight weeks. Her first 12 were unilateral. This coming Monday, she will begin the final stretch of her 12-week treatment course.

"I COULDN'T REMEMBER WHY I WAS HAVING ECT"

"I came out of the anesthesia this morning and I couldn't remember why I was having ECT and I'm still foggy," she said. "I had to do some stuff on the computer and I couldn't remember how. Eventually it came back though..."

"I bought a motorcycle today," she announced, voice sounding a little more cheery. She had been looking at one for over a week. Last summer, her motorcycle was stolen and she's wanted to replace it ever since, but she hasn't been able to move on that decision until now.

She informed me that she did not have her customary afternoon post-ECT nap yesterday, either. 

Instead, she spent the whole day "doing things I had to accomplish," which included spending $16,000 on this new 2009 motorcycle.

"I spent money I don't entirely have," she said. "My mother is lending me $5,000, but when I talked to her about it earlier today, I couldn't really have a conversation with her, I was so confused. This evening, we talked again and I was feeling a little better."

I cut our conversation short. Clearly, she needed sleep. I sensed it and we discussed it. She admitted she was tired and going to bed right after she hung up the phone.

THIS MORNING SHE SOUNDED REFRESHED

At 10:42 a.m. this morning, she sounded like a different person when she answered the phone – refreshed, alert and bright as the day. It's sunny and will reach 18 degrees Celsius. 

"I'm much less confused, though some things are not back yet," she admitted. "I've only been up for about an hour and a half."

We talked about how she learned an important lesson, yesterday, about her need for a nap after her ECT that seems to "scramble my brain." Sleeps seems to unscramble it. 

SLEEP UNSCRAMBLES HER BRAIN AFTER ECT

Sleep heals. We chatted about it and she admitted that having a nap when she can fall asleep on the afternoons after her ECT treatments "may be an answer." 

She was giggling and laughing a lot during our talk. She reported that she was feeling "not too bad" – generally "normal" about her mood and life in general, with "not a lot of plans for the day." 

Usually, Angela sees her psychiatrist on Friday mornings, but today, her psychiatrist is attending a conference.

"I'm not nearly as confused as I was last night, not by a long shot," she said. "I'm feeling much better and my memories are coming back. It just takes a little time, which can be frustrating."

*   *   *   *   *

HONOURING THE MEMORIES OF PSYCHIATRIC PATIENTS PAST

About four weeks ago, Geoffrey Reaume sent me a note about an upcoming, intriguing and creative-sounding artistic initiative called "Words on the Wall" ~ a fundraiser for plaques for the 19th Century Patient-Built Wall.

Geoff and I go back quite a few years. I've interviewed him several times on a variety of topics related to the history of psychiatric treatment of "inmates" at the former Provincial Lunatic Asylum, now the site of the Centre for Addiction and Mental Health (CAMH) at 1001 Queen Street West. 

He is not only a "psychiatric consumer survivor" himself – and flourishing in his recovery, I might add – but also he is the author of Remembrance of Patients Past: Patient Life at the Toronto Hospital for the Insane, 1870-1940. 

This is fascinating and at times alarming history. Geoff is a dedicated and passionate advocate of honouring the memories of the patients who built this wall. He is the driving force of The Psychiatric Survivor Archives who freely and quite regularly shares his expertise and the stories behind the bricks for for people who wish to tour the wall with him.

And finally, Geoff is a York University assistant professor who teaches and researches in the area of disability studies and one of his courses is called Mad People's History. 

BUILD A BRICK WORK OF ART AND HELP PUT "WORDS ON THE WALL"

Now that I've given you Geoffrey's history, here's why he contacted me. 

On April 21 at the Gladstone Hotel, this special "Words on the Wall" event will be held in conjunction with This is Not a Reading Series.

You can take part. The Psychiatric Survivor Archives of Toronto is giving out bricks to serve as the basis for a work of art – possibly yours. Artists and groups, anyone, really, can use a medium of their choice to decorate or create an original brick-based work of art that will be sold by silent auction that night. The evening will raise funds for historic plaques to commemorate the history of the patient-built wall.

That evening, Geoff will also lead one of his engaging tours of "the wall," followed by a relaunch of the 2nd edition of his book, Remembrance of Patients Past. This evening will wind up with the silent auction.

The deadline for submissions is Wednesday, April 7 and to request a brick or for more information, email psychsurvivorarchives@gmail.com or phone 416-661-9975 or 416-809-1013.

WE MUST KEEP CHALLENGING DISCRIMINATION THOUGH EDUCATION

This is a universally significant event, I think, because we must never forget where we've come from, how important and vital our history is and how much work needs to be done to publicly educate everyone, young and old, about psychiatric issues past and present.

Without emotional health and well-being, we have nothing. 

We must challenge and keep challenging discrimination – through education.

We are the best experts. We all can raise our voices. We need to be heard. 

Activist Judi Chamberlin dies at 65...

American mental health advocate/activist Judi Chamberlin was a powerhouse, a beacon in the fight for equal rights for people with mental illnesses. A psychiatric survivor, she was considered the "grandmother of the mad pride movement." 

She died peacefully, at 65, on Saturday in her Arlington, Massachusetts home after a long fight with lung disease.

For the last two years, Judi was a hospice patient, living with Chronic Obstructive Pulmonary Disease (COPD) for which she never had any risk factors. She never smoked. 

She discussed her medical history candidly on her blog, Life as a Hospice Patient, where she wrote courageously and with brutal honesty, giving a voice to a group of people you rarely hear from – people who are dying in hospice care.

Yet despite her illness, Judi lived out loud every moment of her life and never stopped fighting for people's civil rights, especially people with mental illnesses. That was her fight.

Notice of her death will not be carried in the mainstream press. This is a tragedy. She left her mark on the American mental health care scene and touched the lives of people with mental illnesses around the world. 

Her obituary is posted on the NPR website where you can also listen to a short radio version. You can also hear Will Hall's 2006 in-depth interview with her on Madness Radio.

Her book, On Our Own, was published in the U.S. in 1978 (later in England and in Italy) where it is considered a manifesto by people with mental illnesses fighting to be treated in hospitals and by health care professionals with the same dignity and humanity as people with physical illnesses.

Judi was a founding member of the National Empowerment Center and was a Senior Consultant on Survivor Perspectives at the Boston University Center for Psychiatric Rehabilitation.

She was originally treated in a state mental hospital for depression in 1966.

"Very quickly, (I) found out that once you sign papers to go in on a voluntary basis, but then you can't leave when you want to leave, which was absolutely shocking to me," she said, according to the NPR obituary.

"She got out of that state hospital and moved to Vancouver, British Columbia, where she lived with other people who'd been diagnosed with mental illnesses but who'd then gotten government money to develop their own treatments.

After recovering, she moved to Boston and started working with other former American psychiatric patients who "wanted to change the system." In many ways, she did.

She published widely, travelled far and inspired hope in people all over the world.

I'm sorry I never met her. 

All quiet on the August front...

I'm happy. I'm free. For the next 13 days minus one morning, I am not a part-time community college teacher. I am a blogger. Full-time. Your blogger!

If I have not commented or responded to your recent comments, please forgive me. I read them. I wanted to respond, but I was under a huge gun. Thank you for them, for caring and being so tuned in to me and to each other. That's what community is and we, I believe, are a community. I want us to be.

But now, today, as of 2:40 p.m. this afternoon, the Summer 2009 term at Seneca College is officially over and I am me again, entirely. Not a split personality, driving madly between my life with you, thinking about you, and concerned about you, and my students, and their concerns – trying desperately to get them through my course. If you want a thoughtful and very insightful sense of my life as a part-time community college teacher, read this from The New York Times. My niece, a newly-minted PhD who began teaching today at Duquesne University in Pittsburgh sent it to me and in turn, I've sent it to about 12 of my part-time colleagues, all of whom agree that it was the story of their lives.

Not now, though. 

Right now, I have NOOOOOOOOOOOO students. Yipppppeeeeeee!!!!!!!

So, I want to celebrate. Here I sit, with not a thought on my mind. Well, not quite. I have two deadlines that are niggling at me and I'm going to do something about those. That's a good thing.

You know, it's interesting, but since everyone takes August off, it seems, nothing much is happening in the mental health world. I subscribe to about 20 psychiatry, mental health and bipolar blogs and right now the biggest news story is that Prime Time on ABC is airing a show on Mad Pride in a few minutes – the old violence issue will be a focus. You'd think an outfit like ABC News could come up with something other than this tired stereotype. 

You know what they say. Good news is snooze news, so it's easier to go after a sensational angle that represents a tiny minority of cases than find the real story. When the media does the diagnosing, as often happens with a sensational crime, I wonder how accurate those diagnoses really are. Well, I'm not going to think about it right now. It's borrrrring. 

I'll watch it tomorrow.

Other than that, nothing much is happening in the blogosphere around mental health.

I guess when the psychiatrists, psychologists, social workers and other psychotherapists go on vacation, "illness takes a holiday," too.

Helen Henderson's piece in this paper a few days ago about a British film called "Schizo, the horror story" was, as always, excellent. Have a look. The Brits are light years ahead of us in challenging mental health discrimination and working to end it. That's exactly what this new mini-movie, produced jointly by the British government and Time to Change, a leading mental health charity, is doing.

While the Mental Health of Commission of Canada is "Making the Case for Peer Support" with yet another cross-country, face-to-face consultation and focus group, we're still the only country in the G8 with no National Mental Health Care Strategy. They're still working on it. As if "peer support" is news. It's important. Very important, but I guess since it's August, nothing else is newsworthy. Please.

How many people are able to access Wellness Action Recovery Plan (WRAP) groups in this country? Or Pathways to Recovery? Does the MHCC even mention Mental Health Recovery on its website in any meaningful way?

But you know what? For the next few days, I don't care. I'm going to relax. Take care of business I've neglected. Doctor's appointments. Spend some time with my husband who doesn't recognize me these days. And my Dandies. Read anything that has nothing to do with what I'm going to be teaching in the fall. Go to a movie, if we can find one that appeals to us. And think about some intriguing material to share with you.

The Fall film line-up doesn't look all that promising, but I don't care. The Toronto International Film Festival is around the corner, and that's always intriguing to read about. Right now, though, this minute? I don't care about anything. I haven't a care in the world. Until September 8, when it's back to school.

On one sad but inevitable note. Senator Edward Kennedy has died. A voice for reason and compassion in health care, all health matters. Yes, especially mental health care. When you consider the madness that is exploding south of the border around securing  fair and equitable health care reform so all American people can receive the health care they need, Senator Edward's Kennedy's passing is a true loss and a great tragedy. His voice or reason will be missed.

Be well and speak soon!

Very 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

My "Mad" Week...

Toronto's Mad Pride Week 2009 is drawing to a close tomorrow. I don't know if it's a coincidence or the stars just happened to have it in for me this week, but this has been, without a doubt, the craziest week I've had since beginning to write this blog.

I am sitting here exhausted. I have a stomach ache. Emotionally I'm all churned up inside. I had no idea this was going to happen. Last year's Mad Pride Week, the world didn't land on my door with questions, comments, concerns and complaints about the meaning of Mad Pride.

This year, it did. Literally. I wasn't expecting it and reviewing the last five days, had I known this was going to happen, I would have taken a holiday. I wasn't prepared. Now, I think I'm prepared for anything.

Ahhhh, the power of lived experience. But I didn't have a clue last Friday, when I announced I'd be writing about Mad Pride this week.

Since then, I've been deluged. I try to answer the comments I receive and the personal emails, especially if they're from people stressing out. This week, for some reason, many people decided to connect with me. To "come out" to me! And I respect them and engage with them. How can I ignore a cry for help? It's not my nature.

My email box is overflowing with unanswered personal emails. Personal questions from people who need to share their life stories of survival and suffering. 

And asking advice. 

That's one thing I don't do – advice.

Like whether you can emotionally handle the rocky terrain that's covered in the Tony Award winning Broadway musical Next to Normal if you have a family' history of bipolar disorder.

How can I answer a question like that? I'm still processing it, but the short answer is, this is a remarkably hopeful rock opera. Judging from the spontaneous standing eruption of applause as the show ended and the empathetic and heartfelt comments I overheard leaving the theatre in June when I flew down to see it, people were touched, surprised, and visibly quite uplifted with what they had seen, heard and experienced.

When I'm not posting here, I'm keeping up with other activities related to mental health and wellness – this week Mad Pride was the focus. I'm always learning. There's so much to learn.

And speaking of learning, I have another life, you know.

Right now, I'm a teaching a course called Women in Canada, part-time at Seneca College of Applied Arts and Technology. I've taken over the last half and I'm getting to know about 18 new students and helping them through the shell-shock of adapting to a teacher with a completely different teaching style than my predecessor, who created the course around 1971, when I graduated from Seneca with an Applied Communications Media diploma. Now I've come full-circle.

On Wednesday morning, following my two-hour class and a stream of students who came to see me to ask questions about assignments and connect with me personally, I rushed home to ready my house for the annual Board Meeting and Summer Social of the Executive of the Seneca Alumni Association I belong to and I offered to host.

I only slept for about four hours that night. My female Dandie Dinmont Terrier Lucy is in season right now, so she wakes me up at 5:50 a.m. 

Yesterday, all I wanted to do was write my post and plan my lesson for today's class at Seneca. But that wasn't going to be. I was too drained physically to concentrate intellectually, plus I received requests from several journalists for interviews. After all, it's Mad Pride Week, and I've been musing about it since last week.

Then, on top of that, a journalist from CBC Radio's current affairs show, The Current, called yesterday at 3 p.m."just to chat" about Mad Pride and what it means to me. 

Some question. Huge. Mammoth. The answer is endless. I couldn't resist. I can go on all day with an open-ended question like that and I did, for about 80 minutes until I and the journalist ran out of time even though I was just getting up to speed. 

I was late. I was behind in my lesson planning for this morning's 8:00 a.m. class at Seneca. I was late posting for you. I had to get all gussied up for this family affair at my sister's and I didn't even know where to begin. 

It was pure madness. Art imitating life. And my life felt out of control. I desperately needed sleep, but that wasn't going to happen because when we came home after the dinner at 10:30 p.m., I still had to finish my lesson planning and then try to think of yet another brilliant insight about Mad Pride for you.

And I was empty. Dry as dirt. I couldn't think yet I couldn't sleep. And that's my tale of madness. 

So I'm signing off right now and going to bed. It's 3 p.m. If I don't, I'll go out of my mind, crazy, bananas, nuts, bonkers, insane, mad, manic. Sleep heals my mind. I hope you'll forgive me for not writing another word about Mad Pride.

Because as far as I'm concerned, we each have to find our own answers, our own paths, our own meanings, our own ways to live peacefully with ourselves. 

There is no magic bullet. it's a life-long process. Not just one day a year or even one week. It's every day, 24/7 – all year, every year,all your life. That's what Recovery is and as far as I'm concerned Mad Pride and Recovery are joined at the hip. It's not easy, quite the opposite. It's often painful – a series of struggles – but it's worth it. 

Now, for me? Sleep.

Hugs.

 

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!

Flying-High on "Next to Normal" ...

I'm Broadway-bound and here's the scoop! It's cool. 

On May 12, the publicist for the Broadway musical "Next to Normal" sent me a personal email. 

"This show, which was recently nominated for 11 Tony awards, has a very unlikely subject matter for a musical – it focuses on a woman living with bipolar disorder and the effects it has on her family," he said.

He attached a link to a fascinating "must-read" New York Times story about the show's depiction of mental illness and then added: "I think your readers would be interested in this show and we would love to invite you and a guest to see the show, if you are in the NYC area anytime soon."

How about that?

Besides being a mite shocked as to how he found me, I couldn't agree more. You would be very interested, I'm sure, in Broadway's first mainstream musical – a rock musical, actually – about manic depression. 

But... until I received his invitation and two complimentary tickets, I hadn't planned to be in NYC "anytime soon," though I already knew all about Next to Normal. 

Originally, it opened at the 2005 New York Musical Theatre Festival, titled Feeling Electric – Up the Dose – "Darkly funny and brutally honest, this powerful new musical chronicles one family's personal battle to cure a mother of her long-term depression, with the controversial help of one hotshot young doctor who prescribes electric shock therapy as her last resort treatment."

One of my cousins who lives in Manhattan and frequents the theatre saw that production and said "it blew me away."

It's come along way, since then, when tickets were $15 each and it ran for only six performances. 

When the newly-named Next to Normal opened at the off-Broadway Second Stage Theatre in February 2008, Ben Brantley, chief theatre critic of the New York Times, wrote: "To watch this tale of a haunted housewife (beautifully played by Alice Ripley) and the household she in turn haunts is to ride a speeding roller coaster of responses. One minutes you're rolling your eyes; the next, you're wiping them. When the show ends, you're probably doing both at the same time."

With direction by Michael Grief, who also directed Rent and Grey Gardens – I saw the latter on Broadway in 2007 – the current revamped Broadway production of Next to Normal at the Booth Theatre is a "brave, breathtaking musical," Brantley wrote in his April 16, 2009 New York Times review. It "focuses squarely on the pain that cripples the members of a suburban family, and never for a minute does it let you escape the anguish at the core of their lives."

  

It's not "your standard feel-good musical" he said, which is probably why I was offered a couple of complimentary tickets. Ticket sales have vastly improved since the show received 11 Tony Award nominations – all the major ones, including Best Musical. 

That's not why I've decided to fly down to Manhattan for the day to see this show. I want to share my impressions with you. Brantley, to the best of my knowledge, has never been diagnosed with a bipolar disorder. I want to judge for myself. Through my experience. Not the least of which is that I, too, am a suburban housewife (well, sort of) with a husband and 22-year-old stepdaughter. 

And also... winging to New York for the day to see a Broadway show is nothing new for me. In 1969, I flew down to see the original Broadway production of Hair, which opened in 1968 and is now another Tony-nominated revival on Broadway. Theatre producer Marlene Smith hired me to write the program notes for Toronto's first 1985 production of Cats which had opened on Broadway in 1982. On both occasions, I jetted down to La Guardia early in the morning, taxied into Manhattan, had lunch and caught a matinee – then went back to the airport and was home before midnight. It's a kick, believe me.

So, I'm pulling the same routine and I'll be reporting and giving you my own review. By the way, I've reviewed theatre before – I'm not a neophyte – but this time, I'll be watching closely for authenticity. Hollywood has an abysmal record recreating characters with mental illnesses who are remotely close to real. I'm a huge fan of Tara in the new HBO series United States of Tara – but she's an artist. (Think Vincent Van Gogh.) In this show, we have a suburban housewife and the creative team did their homework, apparently, and created genuine characters. We'll see.

This show cuts even closer to the bone, for me. 

Stay tuned. I'll be getting back to you.

*    *    *

On the British front – I jwant to report that I've become a member of Rethink and Time to Change and I've made connections with the heads of several other agencies there, thanks to social activist Robert Ashton. In the coming weeks, I'll be branching out even further – to Australia and New Zealand. 

Wish me luck. And let me know what you think and what you're interested in learning about:

• How other countries' approach mental health and wellness, and mental illnesses  
• How they challenge discrimination  
• How people like us, with psychiatric diagnoses, emotional problems, mental illnesses and disorders are "treated" 
• How we can "heal" 
• How they define "Recovery" 

As far as I'm concerned, you never know, unless you ask. Here, in North America, we think we're the centre of the world – and we're not. I'm curious about other G8 countries with national mental health strategies. I know Australia and New Zealand are even more evolved than Britain. Certainly more evolved than the U.S. and Canada – where the neurosciences currently rule, along with the drug companies.

Something's gotta give. Let's keep the dialogue going. I want to hear your thoughts and ideas. 

I would love your comments, but there is a problem with the blog commenting function right now. If you have a comment that you would like posted, please contact me by email – let me know – and I'll arrange it, until this situation is resolved. 

Trust me, the powers-that-be at The Toronto Star are working on it.

Thanks for your patience and understanding.

Have a great meantime!