Epilogue

Last Friday, when my Anniversary post went up, I knew it would be my penultimate post, here, at Healthzone.

Minutes before, I learned that The Toronto Star has decided to discontinue "Coming Out Crazy" ~ but wait. Remember. We're more than a blog. We're a community.

IT'S ALL ABOUT RESILIENCE

So before you react, let me assure you, our community and the relationships that you and I have spent two years building, all the caring and candour we have here is not going to disappear because of an arbitrary decision. We're more resilient than that. Right? And if not, this is a great time to learn.

The last few days have taught me so much about positive attitudes as I've been churning out lemonade by the gallon.

And listen. Hasn't it been a great ride so far? 

Well, I've decided that we're staying the course. We're just changing, a bit. That's all. And I'm looking forward to it. Even though change isn't always easy. I've made up my mind that things are only going to get better, from now on.

You know my philosophy. I'm not about to cry in my coffee over what I've lost, because I've lost nothing. I've gained. Big time. I choose to celebrate all I've learned. And move on. No hard feelings. I'm not going to dwell on the past, because I cannot change it.

As I've said, I will always be grateful to my editor Brandie Weikle for taking a chance on me, a blogging neophyte, and giving me the opportunity to learn a slew of new skills. For her generous support and guidance. And for her friendship, which will not change. 

I'M NOT DWELLING ON THE PAST – I'M STAYING IN THE PRESENT

I've benefited in numerous ways personally and most of all, I've made so many friends in you.

None of that will change. Now, is where I am and where I intend to stay. With you. Focused. I believe by staying in the present, the future will take care of itself. 

So, we're going to make a few little geographic and environmental changes. Spruce up our look, though we're keeping it simple. Minimalist. Classic. Easy to navigate. With a blog roll – mine's called "The Honour Roll" – and an "About" page. Both will constantly be changing. As we change.

And believe me. Nothing, absolutely nothing whatsoever is going to shatter our spirit in this new incarnation of Coming Out Crazy. I promise.

Resilience is our middle name. We're moving, that's all.

WE'RE GOING TO CONTINUE OUR WORK TOGETHER – AS A COMMUNITY

We're still going to be the community we've become. We're going to continue the work we're doing together. We're going to keep on growing and learning and evolving and exploring anything that touches on emotional and mental health and well being. 

Most of all, we're going to continue communicating and sharing with each other. Educating and enlightening each other. Learning from each other.

I'll continue reporting on my friend Angela, who's in San Francisco right now. And bring you news. More often, too. Not just twice a week. Whenever I like. We're untethered, now. Free.

By the way, did you hear? This week, the Broadway musical I reviewed here, last June, Next to Normal won a Pulitzer Prize for best drama. After its shaky start, this groundbreaking Tony Award winning rock opera about the struggles of a suburban mother with bipolar disorder and the backlash on her family is the toast of the town. And a mainstream commercial hit, too. 

EVERYTHING IS CHANGING SO FAST

Who knows? We may find a new home. Or other new ways to communicate with each other. I'm hopeful. Everything is changing so fast. It's hard to keep up, but it's amazing how you can adapt. So, for now, we're on our own. 

I'm here for you and I hope you'll be here for me.

I send you all affection, gratitude and hugs, for now.

Speak soon.

You can now find Coming out Crazy here.

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!

The gifts of giving back...

In my early adolescence, I remember struggling to learn to play George Gershwin's "Rhapsody in Blue" on the piano. How perfect for a budding manic-depressive, years before psychiatrists branded me that way. Back then, my diagnosis was schizophrenia, though I didn't know it. Nor did my family. 

OBSESSED WITH "RHAPSODY IN BLUE"

I was different. And difficult. Histrionic. My nickname was Sarah Bernhardt. I was also taking drama classes, then. My mother considered drama to be a "good outlet" for me, and those classes kindled a lifelong love of the theatre.

But at home, I was obsessed with "Rhapsody in Blue." Mysteriously it whispered to me, deep down. I couldn't explain it. I tingled with exhilaration. Its manic rhythms resonated emotionally. Not rationally or intellectually or verbally. It calmed and excited me simultaneously. Not only listening to our Oscar Levant recording with Paul Whiteman and His Orchestra – but attempting to play this complicated jazz concerto on the piano, myself. 

I have no musical talent whatsoever, but my persistent pounding on the keyboard of our baby grand demanded concentration and focus. It transported me far from my anxieties at that time. Was I making music? I wouldn't call it that, but whatever I was doing was transforming. Tranquilizing. For me.

I felt a little guilty about the way I was mangling Gershwin's masterpiece. He was probably twirling in his grave, but that didn't seem to matter because his music and my attempt at playing it were magical. It had to be therapeutic, though this was years before music therapy was as prevalent as it is today. It felt good. Liberating. It was a healthier emotional release than my acting out.

Until someone in my family, driven mad by my painful practising, demanded I stop. I did. My lessons were stopped, too, I'm sad to say, though I never lost my love of Gershwin and his music.

THE TRANSFORMATIVE POWER OF MUSIC AND THE ARTS

I was very lucky. My parents were vigilant. My mother could see early on that I was struggling in school and needed other more artistic outlets beyond what was offered there. Not all kids are so blessed.

That's why am I talking about the transformative power of music and the arts.

Last Thursday evening, I attended the Annual General Meeting of the Cabbagetown Community Arts Centre where I was elected to the volunteer board. I'm so excited about this. 

For me, helping this small, grassroots organization in any way I can, transports me back to my youth and, in a curious way, to my unfinished performance of Gershwin's piano concerto. 

The CCAC was founded in 1979 by a local Cabbagetown resident, the late David Blackmore, to offer arts programming to children in nearby Regent Park. In 1985, it became a registered charity and now serves all Toronto inner city children. 

"The bulk of our children come from single parent families earning incomes of less than $20,000 per year," CCAC Board President Peggy Weir said. "They have to register with us and we have a sliding scale of fees." 

Individual lessons are offered in instrumental music, and classes in vocal music, drama, visual arts, photography and karate. Homework tutouring is available, as well as pre-school art, reading circles and creative movement classes for moms and tots.

"We focus on individual music lessons and we have qualified teachers who are more than role models and mentors. For many of our children, meeting with their music teacher is the only chance they have each week to engage with an adult, one on one," Weir said. 

 AN OASIS OF LEARNING WHERE CHILDREN ACQUIRE AN EXTRAORDINARY SENSE OF SELF

"Our vision," according to a one-page overview of the CCAC's mandate, "is to be an oasis of learning where children acquire an extraordinary sense of self, of a world where all children and young people have a sense of belonging and are loved and valued. A world where they can fulfill their potential, shape their destiny and experience the joy of life."

Its mission is to do this by "providing them with arts and music lessons focused on building character, discipline and skill."

One woman at the meeting, clearly passionate about the work of the CCAC, sent her son there when he was a child. She talked about how she used to clean the Centre to earn extra money so she could take him to concerts to "see and hear" the music he was learning, being played by the Toronto Symphony or other professional musicians.

Though he's now 29, he did not follow his musical muse professionally, his mother reported. Instead, he became a medical doctor and he's now studying in Florida.

"But he went through the University of Toronto," she said, stressing that the values, skills, disciplines of his musical training and the sense of community at the CCAC equipped him to carry on with his higher education. It changed the course of his life.

Other students have gone on to study music at the Royal Conservatory of Music and funds raised by the CCAC can cover the costs of their entrance examinations. 

MUSIC MAKES EVERYONE FEEL GOOD

"There are oodles of studies showing that studying the arts, particularly music, promotes learning," Weir said.

"Children who take music lessons often become quite enamoured and end up practicing. We give them instruments to take home – violins and keyboards. They have the responsibility of taking care of them. Also, if you're practicing, you're less likely to be hanging out at the corner with friends who may be offering you illegal substances."

Weir has been involved actively with the CCAC for six years and has lived in Cabbagetown for 25 years. 

"I know this community and through my personal experience, I know that music is the great leveler," she said. "It doesn't matter where you come from, it's the international language. I moved to Canada from Brussels. Listening to music or playing an instrument, it no longer matters what language you speak or what your dad does or where you live. It makes everyone feel good. It lifts you up and takes you out of whatever closet you find yourself in."

My music making days are long gone and with my hearing loss, even listening to music is not what it used to be, but I have another source of pleasure that's even more rewarding.

Volunteering. I grew up with a mother who was always active in the community and I've been volunteering for years.  

GETTING OUT INTO THE COMMUNITY AND GIVING A HELPING HAND

There's tons of research proving how volunteering is beneficial for your physical and mental health. I believe in preventative health. Who knows what problems the CCAC may be preventing down the road for its children?

And everybody has something to give. 

That's why I'm so thrilled about joining the CCAC board. Meetings take place in the centre, a newly renovated, brightly-lit space in an old red brick house on Parliament Street. During our meetings, which take place there, we can watch young people bustling to and from their classes. 

You have no idea how exciting it is to watch how your efforts are transforming lives right before your eyes. I can't wait for the Spring Recital.

Not long ago, I met a woman who was struggling with depression. She decided to drive patients to and from their chemotherapy treatments for the Canadian Cancer Society. Her mother had died of cancer and she found that a meaningful way to give back. She admitted that it made her feel better. 

"I still have my dark days, but it gets me out and out of myself," she said.

You cannot buy these gifts of time and care that you're giving. No store carries them. They are priceless. As priceless and rewarding as the way giving them makes you feel.

This & That...

It seems like ages since I last posted, or responded to your comments. I've been remiss. I apologize.

Please forgive me. I've missed you.

Although I hate it when people talk about how busy they are – because we're all busy – it seems that this is an uncommonly "wild and crazy" time.

Between Passover seders that fell this year on two of the three days I teach, plus all my marking, which is over for the time being, I have not watched any television, cracked open a book or even read the newspapers very carefully. To be honest, I don't miss the TV, but I'm feeling a little out of touch.

Except, I got a real kick out of a charming story in this past Sunday New York Times about U.S. President Barack Obama and this year's second White House seder. 

Most of all, I'm terribly sorry that I've had to neglect "Coming Out Crazy" – and you – for a few days.. So today, I'm going to play catch up and fill you in on what's happening with Angela and some other news and views. Plus, this is a short week, with Good Friday tomorrow and Easter Sunday. It's tax time, too. It means we're all working harder and faster than usual to accomplish more that needs to get done, in less time. 

Stressful, to be sure.

Next week, I plan to return to my regular schedule of two posts a week, plus commenting on your comments. Thank you for your understanding. 

ANGELA PLODS ON AS HER ECT TREATMENTS DRAW TO A CLOSE

Angela has about four or five more treatments left. Neither of us is sure if she'll be having ECT on Easter Monday, so we don't exactly know.

We speak almost daily. Yesterday morning, she was upset because there's been a hitch with her new motorcycle and she's anxious to get her hands on it and start biking the highways and byways of Ontario as spring temperatures are rising. I cannot believe it will be 24 degrees Celsius tomorrow, but that's what the weather man is telling us.

One recurring theme in our conversations is that ECT may do wonders for one's mood, but it doesn't solve all the problems in your life. And it can create others, like problems with memory – though Angela didn't complain about her memory at all yesterday.

I've been thinking about all the things that electroconvulsive therapy cannot do and was never intended to do.

Sometimes, Angela expects miracles but she's beginning to realize how much long term work she has to do with her psychiatrist in psychotherapy – in addition to the ECT. And she is willing to have maintenance ECT treatments if it is recommended.

ECT WORKS BEST IN COMBINATION WITH PSYCHOTHERAPY

"My way of thinking is messed-up," she admitted yesterday morning. "It's gonna take a while to fix. Still, I do think the ECT is beneficial. And I don't think it would be as beneficial unless it's combined with therapy."

This is true for all psychiatric treatments. And for emotional healing. Medications are much more effective in combination with psychotherapy. Ultimately, though, you have to do the work – and it IS work. Whether it's psychiatric therapy or peer support or any number of other approaches – any therapy. It's never easy and often painful. It's all about change. Transformation. I've been at it for close to 50 years and still counting. More than 20 years with Dr. Bob. Trust me, it's worth it.

Changing the way you think and perceive, changing your beliefs and your behaviour patterns is the toughest work in the world, but I wouldn't trade all those years of psychotherapy for the world. That's why I call it "my PhD in me" – though I'll never graduate with any degree. This is what recovery is all about. Those years have given me peace of mind – insight – as I hope they will Angela.

All that work is the only way to truly go into recovery. (As I've often said, you won't find insight in a bottle of pills.) It's a constant. Never ending. Because our lives are changing all the time – throwing us curves we have to deal with and adjust to. Dr. Bob and I often joke about how we'll be together until we die. "Whoever goes first." I don't view this as a weakness, either. It's a strength because change is so challenging and ultimately so rewarding. Builds resilience.

Despite the fact that we resist change, which is natural, I suppose.

CHANGE IS NEVER EASY – THERE'S ALWAYS RESISTANCE

Just look at what's happening in the U.S. and all the resistance to the new Health Reform Bill and its amendments that were passed over the last two weeks. Surgeon and journalist Atul Gawande puts this revolutionary change (for the U.S.) and the resistance Health Reform is facing into perspective in a fascinating commentary in this week's New Yorker titled Now What? 

When it comes to change, some things never change, I guess...

WHAT'S NORMAL? AM I NORMAL?

Whenever anyone, I mean ANYONE, starts talking about being normal or not being normal, I jump in and say, "What's normal? There is no normal."

Psychologist John Grohol had a nice little post about that this week on his PsychCentral blog World of Psychology that explores the question we all ask ourselves at one time or another: Am I Normal?

I don't ever ask it anymore. Instead, I view everyone as "Next to Normal" which nicely encompasses all manner of quirkiness and eccentricity and even outlandish behaviour. Extreme behaviours.

I picked up that handy little phrase after flying down to Manhattan last June for a mid-week matinee of a then-new Broadway rock musical/operetta about a suburban family coping with a mother who has serious and seemingly drug-resistant bipolar disorder.

WE'RE ALL NEXT TO NORMAL

This show is called Next to Normal and I will be forever grateful because of its integrity, honesty and respect for the complexities of psychiatric conditions and their impact on everyone they touch directly and indirectly. (We're all touched in some way.) More important to me is that it puts into perspective this rather absurd notion of "normal" – which applies perhaps to body temperature – 98.6 degrees Fahrenheit. That's about it.

When it comes to people and their personalities and behaviours and experiences, I have no idea what "normal" means. 

Do you?

Three days later, this stunningly authentic show picked up three Tony Awards, including Best Actress in a Musical for the wildly talented and irrepressible Alice Ripley, who plays the mother, Diana Goodman and sings most of the songs.

This show was slated to close in August 2009, prior to its Tony wins. It wasn't drawing great crowds. That's why I was invited to attend and comped two tickets. Instead – three days later, after scoring big at The Tony's, it started picking up steam and has continued to resonate with its audiences. The wildly spontaneous standing ovation as the curtain goes down is testimony to that. Its run has been extended repeatedly.  

Last Saturday, March 27, marked the first anniversary of Next to Normal's Broadway run. This little show that almost didn't make it has turned a profit, both signs that it's a legitimate Broadway hit.

Here's the clincher. It's an artistic and commercial hit about a most unlikely subject for a rock musical – a serious mental illness – bipolar disorder. There's even a scene during which Diana undergoes ECT, and as a result loses her memory.

I think this is revolutionary. Think of it. A major mental illness goes musical and mainstream. It's not depressing, but inspiring and uplifting. A national tour is planned for the fall. I think this is the best news of all. 

Don't you?

Have a good weekend and speak soon. I feel so happy to be back.

Angela to continue bilateral ECT...

After meeting with her psychiatrist yesterday, Angela has decided to continue her bilateral electroconvulsive therapy treatments for intractable drug resistant depression and suicidal ideation. 

She told me that she had considered going back to unilateral ECT, which is gentler, but generally less effective. 

However, after consulting with her psychiatrist, she has chosen to solider on with bilateral ECT, which has proven considerably more beneficial in her case, despite developing problems with her memory. 

"The side effects are not permanent, so I will continue with the bilateral treatments," she said of her increasingly "annoying" memory issues. "And I have only three weeks left."

Angela is planning to go back to school in June and her psychiatrist assured her that she should be fine by then. 

Prior to having her fifth bilateral ECT treatment at 7:15 a.m. this morning, she had 12 unilateral ECT treatments. 

Marking Madness and Angela's memory...

This is a dreadful time for college teachers. Assignments are piling up, students are anxious for their marks, final examinations must be set and as the end of term approaches, stress levels are on the rise everywhere.

AN UNNERVING EXPERIENCE

Plus... yesterday, I gave a speech about my mental health history and my life since my 1971 graduation from Seneca to a class of students, not my own, as part of the brand new Seneca Alumni Speakers Series. I was the second Alumna to speak. This was a first and not unnerving. (More about that later.)

Angela is chugging along. Her memory, after four bilateral electroconvulsive therapy treatments is becoming troublesome. "I have to write everything I have to remember to do on Post It notes," she told me last night. She sounded a little groggy after taking some of her nighttime meds. 

The problem with that system, she explained, is that she can't always remember where she puts the Post Its. I suggested she keep a journal and write everything in one place, but then I thought. What happens if she can't find that journal?

"I can't remember how much I owe on the new motorcycle I just bought and I had to call the dealer and ask," she said. 

ANGELA'S MEMORY

On the plus side, her mood is good. So today, when she sees her psychiatrist, she plans to discuss whether she should continue with the bilateral treatments for another three and a half weeks or go back to unilateral ECT.

"I'd like to continue with bilateral, but the memory loss is annoying. I have things I have to do that demand memory," she said. "Right now, I'm not erasing any emails because once they're gone, they're gone."

So we'll see. You'll be the first to know. Promise.

TIME OFF TO MARK

Meanwhile, I'm taking the today off and Friday, too – to mark, mark, mark. I simply have to get all my marking finished or my students will murder me. 

You don't want that to happen, do you? On second thought, don't answer that. :)

So, I trust you'll understand. And incidentally, that's why I haven't been responding with my usual regularity to your comments. The end is in sight, though. After April 28, I'll be a free woman. For a while. Maybe. Who knows?

Speak soon. We're living in historically exciting times. 

Have a healthy meantime.

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. 

My lunch with Angela...

Angela and I had lunch last Friday and here's what's transpired since.

When she picked me up (on Fridays I'm carless as Marty teaches and needs our trusty 1999 Honda Accord) I couldn't believe how thin she looked.

Over the last few months, she's lost weight and claims she wants to lose more. Though she's often said she tends to forget to eat, lately she's been working out – and it shows. 

Also, last Friday was a dreary, windy, bone-chilling day. Raining hard. Miserable. Depressing. An old back injury of hers was acting up and she was in pain. She's so drug resistant, only morphine helps, she claims. She didn't have any handy, so she was trying to ignore the aching in her lower back, but I could see it in her face, and in her eyes.

Plus, she drives a sporty Jeep that prides itself, she informed me, in providing bouncy, bumpy, jerky, jarring rides. Ouch.

LAST FRIDAY'S FIRST BILATERAL ECT WAS NOT FULL-THROTTLE

We drove over to a local Middle Eastern restaurant about five minutes from here called Shoom Shoom, which means "Garlic, Garlic" in Hebrew. Angela likes the chicken Shawarma there and I like the fig and walnut salad. 

En route, she mentioned that her first bilateral electroconvulsive therapy treatment the previous morning (her 13th thus far in her 12-week course of 24 in all) "only brought me to a threshold because they wanted to see how I'd handle it," she said. "I'm going to get the full treatment on Monday."

Her psychiatrist had just told her that about 90 minutes earlier during one of their regular bi-weekly sessions.

She seemed more subdued than celebratory. The spunk and spirit I thought I had heard in her voice on the phone the night before had drained away. 

Over lunch, our conversation flipped around. We caught up, mostly. Small talk. Her sister was coming in for the weekend and we talked about her upcoming wedding. We discussed her mother's health. She chatted about the complications of her life. We shared stories about her therapy, and mine. 

She showed me pictures on her iPhone of her latest sculptures and the abstract paintings she has started. "I tore that one up," she kept saying, despite my pleading with her to never destroy her art.

HER MEMORY SEEMED FINE

I was mindful of the tempo of the conversation and there didn't seem to be much difference. Her memory didn't seem to be slowing her down. She wasn't searching for answers to my questions.

However, this week, since her Monday "full-throttle" ECT treatment, that tempo and her tone has changed.

On Monday afternoon, about six hours after her treatment, she seemed more volatile than I remember her. Frustrated. Anxious. Angry. She was feeling "ripped off" – but definitely spirited. There was an edge in her voice that I didn't recognize. I had some thoughts about what was happening, about the relationship between anger and depression. Was the ECT doing this? I'm no expert. 

AFTER HER STRONGER MONDAY ECT TREATMENT, SHE SOUNDED ANGRY

Rather than speculate, I consulted my resident expert, Dr. Ron Pies, Editor-in-Chief of Psychiatric Times, professor of psychiatry and lecturer on bioethics and humanities at SUNY Upstate Medical University in Syracuse and clinical professor of Psychiatry at Tufts in Boston. He is, with S. Jacobson and I. Katz, author of Clinical Manual of Geriatric Psychopharmacology, and a number of psychiatric texbooks. His most recent book is Everything Has Two Handles: The Stoic's Guide to the Art of Living his upcoming book, "Becoming a Mensch", is to be published late this year by Hamilton Books.

I've never been depressed. I tend to voice my frustrations. Loudly. But, I'm not Angela, and I've have many more years of psychotherapy than she has. I'm also a lot older, though not necessarily wiser, than she – 24 years older.

Ron responded quickly, as always to my question about whether "depression is anger turned inwards." 

IS DEPRESSION ANGER TURNED INWARDS?

Here is a section of his answer. It's general. I never ask him specific questions about Angela as that would be betraying a confidence and unethical:

"The notion that depression is ''anger turned inward' has a long pedigree — it goes back at least as far as Freud and his theory of 'melancholia'; he held, in effect, that after the death of a loved one, the melancholic’s unconscious anger with the deceased becomes directed at the self, which has 'incorporated the lost person through introjection''. If it sounds complicated and dubious, it is!," Ron wrote.

"To my knowledge, there are few empirical studies that have supported the 'anger turned inward' model of depression. I also think there is very little empirical evidence that 'getting mad' as such is of any real help to people with serious depression. I think this is mostly part of the 'let it all hang out' philosophy that dominated the late 60s, and I think most mood disorder experts don’t put much stock in it. 

"There is some truth to the idea that if you constantly walk around feeling that you have been “short-changed in life”, “ripped off”, “victimized”, “screwed over”, etc., you will undoubtedly feel angry, and probably depressed as well—or at least demoralized and impotent," Ron continued.

"The idea, then, is to examine your presuppositions about what the world 'owes' you—as in, 'Who said the world is fair? Who said that the world owes you what you think it owes you?' etc."

This really resonated with me because Dr. Bob has often said, "Who said life is fair?" when I bemoan the fact that I'm now chronically ill because a former psychiatrist of mine neglected to monitor my Lithium levels properly and I lost my kidney function and had to have a kidney transplant after two years of dialysis. The drugs I take to prevent rejection have dire side-effects, like chronic anemia.

Or because I was raped at the age of 14 in a psychiatric ward by an orderly when I was there for observation and that assault precipitated my psychotic episodes and has left me with permanent emotional scars. 

However, the difference between me and Angela is that I don't blame anyone for anything. What's the point? 

Blame is a waste of time and solves nothing. Just like guilt and worry. They're not part of my emotional make up anymore, but I work hard at this. I guess that's what more than 49 years of psychotherapy has taught me. You don't get that kind of insight out of a pill bottle and all the time and work in psychotherapy makes for a much more peaceful psychic existence. 

IS BILATERAL ECT FINALLY HELPING HER DEAL WITH HER REAL FEELINGS?

I kept wondering if the ECT was freeing Angela's mind and helping her to get closer to her real feelings.

Ron continued...

"Here is where REBT (Rational Emotive Behavioural Therapy), CBT (Cognitive Behavioural Therapy), and other cognitive-behavioral therapies come in — as well as the stoic philosophers discussed in my "Handles" book. Another approach is to teach the chronically angry and depressed person to be more assertive, in a constructive way — not throwing tantrums or screaming, but taking assertive, appropriate action to bring about desired change. (It is a misunderstanding of stoicism to think of it as saying, 'Just accept things the way they are' or 'Suck it up!'. Rather, stoicism is more like the now well-worn maxim usually attributed to Reinhold Niebuhr:

God, grant me the serenity

To accept the things I cannot change;

The courage to change the things that I can;

And the wisdom to know the difference.

"All that said, the relationship between anger and depression is probably very complicated, with a question as to which is the 'chicken' and which, 'the egg.' A full answer to your question would probably take a book, Sandy, but the bottom line for me is that when people are chronically angry, it probably has an 'erosive' effect on their mood."

"DIFFICULTY RETRIEVING INFORMATION FROM MY BRAIN, BUT IT COMES BACK IN A MINUTE"

Yesterday, when we spoke on the phone, 36 hours after her second bilateral ECT treatment on Monday, Angela sounded less frustrated and angry, much calmer. We talked about The Serenity Prayer, which she'd heard of and then I asked her about her memory.

"It's interesting," she said, sounding perfectly fine, intrigued by the way her mind and memory were reacting to this new-for-her ECT modality – she's switched from unilateral ECT. "The things I'm forgetting now are the things I know, but it takes me extra time to find them. It takes more concentration. Like if I'm driving somewhere and I know that I know the route, I have to concentrate on where I'm going, whereas before, I didn't have to think about it. It was automatic," she said.

"I'm have difficulty retrieving information from my brain, though in a minute or two, it comes back. I wouldn't call it memory loss because the information is there and I know it. I just need a little more time. I have to put extra cognitive thought into strategically focussing on finding it. But it's there and it always comes back."

Meanwhile, she's getting things done. She's out and about, working on getting her life back in order with more energy and determination than she's shown in months.

Tomorrow morning, she'll be having her third bilateral ECT treatment. I'll keep you posted.

Angela goes bilateral...

Wednesday, March 10 at 4:45 p.m. The phone rings.

"What do you think of the idea of me trying bilateral?" Angela asked.

Her psychiatrist in charge of her current course of Electroconvulsive Therapy had raised the issue in a telephone conversation earlier that day. 

WE DISCUSSED MAKING THE SWITCH

For about 15 minutes we discussed her concerns about making the switch, much in the way we had when she called and asked me, "What do you think of ECT?" back in early January. 

Angela explained that her doctor had made the suggestion because was she might progress more quickly with bilateral versus unilateral ECT. She has had 12 unilateral ECT treatments over the last six and a half weeks. 

"I'm definitely going for the extra four weeks," she said, referring to the option she was given when she first discussed her treatment course and the study on memory loss in which she's involved. "But I'm worried about changing things mid-stream." 

Ultimately, I suggested she speak to her outpatient psychiatrist, who knows more about her psychiatric history and about the differences between unilateral and bilateral ECT than I do. 

She agreed and signed off.

In the meantime, I started nosing around the Internet for a good, reliable distinction between the two variations on ECT administration, without much luck. Most sources were dated in the last century and not very reliable, as far as I could tell.

Within 10 minutes, Angela called again.

"I'm having my first bilateral ECT treatment tomorrow," she said. "I'm going to try it. I discussed it with my psychiatrist and she thinks is a good idea. If I find it's too hard on me, I can always go back to unilateral."

UNILATERAL VERSUS BILATERAL ECT

Wednesday, March 10, 5:41 p.m. 

I fired off a note to my mentor and friend, fellow blogger and sage, Tufts University clinical professor of psychiatry Ronald Pies, MD. 

"I have a question for you. Angela has decided on her doctors' recommendations to try bilateral ECT. She's not progressing fast enough, I guess. She's going to have her first bilateral treatment tomorrow. I want to post about it on Friday. Although, I see an impressive improvement. It's not enough. She's in week seven and has decided to go for 12 weeks. 

"If I could quote you and link to a good article that describes the pros and cons of bilateral versus unilateral ECT, something recent, in this century, that would be perfect. I've looked and I cannot find anything. Am I missing something? Is there something in the archives of Psychiatric Times that I cannot see? I'd rather quote you and link to an article on this ultra controversial subject, but I'm a little stumped." 

At 8:07, Ron's email arrived:

"Given that these are very technical matters, I thought the comments from the Royal College of Psychiatrists, 2008, would be more helpful than a journal paper," he wrote. "I think this really summarizes the situation, as I understand it, quite well. It comes down to a trade-off between very high efficacy, significant cognitive side effects [bilateral ECT] and high efficacy, mild-to-moderate cognitive side effects [unilateral, non-dominant ECT]. There really is no “right” or “wrong” decision."

NO "RIGHT" OR "WRONG" DECISION 

"In bilateral ECT, the electrical current is passed across the whole brain; in unilateral ECT, it is just passed across one side. Both of them cause a seizure in the whole of the brain. Although there is a lot of research being done, it's still not clear which type of ECT is 'best'. 

"Bilateral ECT seems to work more quickly and effectively and it's probably the most widely used in Britain; however bilateral ECT seems to cause more side effects. Unilateral ECT has fewer side effects, but may not be as effective; unilateral ECT is also more difficult to do properly. 

"Sometimes ECT clinics will start a course of treatment with bilateral ECT and switch to unilateral if the patient experiences side effects. Alternatively they may start with unilateral and switch to bilateral if recovery isn't happening. The choice of bilateral or unilateral ECT will depend on the needs and wishes of the patient, the opinion of their doctor and the skills of the ECT team." 

(The boldface is Ron's – not mine.)

Thursday, March 11 at 4:05 p.m.

When I get home from Seneca, I pick up a voicemail message Angela left on my home phone at 1:13 p.m. 

"Hi. It's me. Just checking in. Call me."

HER VOICE SOUNDED COMPLETELY DIFFERENT...  NEW

It doesn't sound like her. At all. I barely recognize her voice, but from the log on my telephone screen, I know it is.

Instantly, I call her back. 

"How are you?" I ask.

There's a liveliness in her voice I've never heard before. Ever. We met in 2006, on the phone. She called me when I was still working at The Toronto Sun. I knew nothing, then, of her psychiatric history or her depression.

"I feel good, but confused," she says.

I can't get over her tone. It's sharper. Stronger.

"Can you describe your confusion?" 

"It's a little bit of confusion, like I can't remember everything I'm supposed to remember," she says.

"What do you mean?"

"Well... it like my thoughts are dull," she says. "I guess I'd call it mild confusion, but it's more pronounced than before."

She said she slept most of the afternoon, following her first bilateral ECT treatment at 7:15 a.m. that morning.

"I just got up," she said. 

I couldn't believe the way she sounded. 

"Maybe I'm spunky. The bilateral treatment was great!" she said. "There were three medical students with the psychiatrist and so she explained everything she was doing very carefully to them, and to me. She told them that I had been having unilateral and that now I'm having bilateral. And so far, I think I can handle it, so I'm going to continue with it." 

Then she started chatting about how much money she had spent that day on new brakes and tires for her car.

"It needed to be done, so we finally got our act together and did it," she said.

TODAY, SHE'S COMING UP HERE AND WE'RE CELEBRATING!

This was the most proactive thing she had done in months. Two weeks ago, she couldn't get it together to get out of her apartment and go for a walk on a sunny day. 

"Oh, and you know what? I had a good time with my anaesthesiologist today," she said. "When he gave me my drugs, he said, 'Have a good sleep.' And you know what I said to him?"

"No, Angela. Tell me."

"I said, 'Night, night!'" 

She was laughing. Really laughing. 

So, today we're celebrating. Right after she sees her psychiatrist this morning at 10 a.m. she's driving up here and we're going out for lunch. 

And I can't wait to see her!

 

Angela's progress ...

Hi there.

I'm back! How are you?

You have no idea how much I've missed you. So much has happened over the last week – my Reading Week. There were times I ached to sit down here at my trusty iMac and write to you – what a relief it would have been to interrupt the monotony of "marking midterms," but I needed a break.

I've continued speaking with Angela daily over the last 13 days even though I've not been posting about her progress. I take notes. I have an Angela journal.

She's had a few little ups and downs but nothing dramatic – with one exception – and this would definitely qualify as an "up"... she's sleeping well. Better than she's slept in years. 

Angela is athletic. She loves to snowboard. Watching hockey is one of her passions. You know where she is every Saturday night and could safely bet money on it. It's a good thing she doesn't have her Electroconvulsive Therapy treatments on Saturdays.

On a few occasions, over the last week and during the Olympic Hockey matches, she slept through the games. 

And she wasn't upset about it.

Once, she said she went to sleep "to escape my mind," a curious phrase. When I asked her why, she mentioned some long running personal concerns, matters of everyday living that no ECT treatment can or ever has been able to resolve. The stuff that can turn a good day sour for anyone. The stresses that wear you down emotionally.

ECT IS GRADUALLY TRANSFORMING HER OUTLOOK ON LIFE

These issues are not the cause of her drug-resistant clinical depression. They could be filed in a drawer called "Life Sucks" and we all have those drawers. Sometimes, I think unhappiness is confused with depression. Both can be exhausting and stressful, but for Angela, her ECT is gradually transforming her outlook on life. Brightening it. Refreshing her mind. Buoying her on so she can better handle the real consequential issues in her life.

Not just those "Life Sucks" issues, but even tougher stuff. 

SLEEP HEALS

Sleep, as I've often said, heals. So it is, often, for Angela. She's an early riser and not only on the two days a week when she must awaken at 6 a.m. to be at the University Health Network at 7 a.m., hopefully to be the first in line to receive her ECT treatment, which she prefers.

Since she began her eight or possibly 12 weeks of bi-weekly ECT treatments on Monday, January 25, she's has changed dramatically, although it's a slow and steady transformation and she's not entirely aware of it. These posts have become a mirror for her.

It's blatantly obvious to me that she's joking and laughing more these days than I've ever known her to do – and we've known each other for years. When I called last night, she was watching the Toronto-Boston Hockey Game and not sleeping.

"It's tied right now," she said, sounding anxious to get off the phone. I let her go back to her passion. Three months ago, Angela felt no passion for anything. She complained constantly of feeling "flat" or "feeling nothing" or "being blah." She was immobilized by her severe depression.

Last night, her gusto for the game she loves seemed a significant benchmark in the headway she's making.

SUICIDAL THOUGHTS SEEM LIKE A THING OF THE PAST – FOR NOW

After 12 treatments, her suicidal thoughts seem a thing of the past. She hasn't mentioned them in several weeks. This doesn't mean she is perfectly recovered. ECT doesn't purport to solve all your problems and cannot. She knows this. She sees her psychiatrist twice a week. She takes all her medications.

She also knows that she may need follow-up weekly or semi-monthly treatments when this current treatment course finishes because ECT is not permanent. Depression can be cyclical. So she may need ECT on an ongoing basis or every three or four or more months. But it should keep her suicidal thoughts at bay and help her function better than she has in years.

ECT IS NO ONE SHOT DEAL

No responsible, knowledgeable and experienced psychiatrist who routinely administers ECT would ever suggest that ECT is a one-time only treatment course. For some people, not all, it's not. 

Like medication, it may have to be part of an ongoing treatment protocol for mood stability. (Like the Tegretol that I take twice a day for my mania. I've been taking it for 22 years. It's one of my major recovery tools.) Any follow-up ECT regime, its schedule, differs depending on each individual ~ as does everything in life, it seems. 

Since her first course of ECT treatments in 2001, Kitty Dukakis has follow-up "sets of ECT treatments," on average, every seven or eight months, when her depression returns. The wife of Michael Dukakis, former Massachusetts governor and 1988 Democratic Presidential candidate, bravely and with brutal, visceral honesty writes about her ECT experiences in Shock – The Healing Power of Electroconvulsive Therapy. It ended her lifelong struggle not only with severe drug-resistant depression, but with her alcohol and amphetamine addictions that masked it for years.

HER MEMORY HAS STAYED PERFECTLY INTACT

Angela is now in Week Seven of her treatment course. It may end next week or continue for four more weeks. She doesn't know. So far, her memory has stayed perfectly intact. Sometimes, like this past Monday morning, 90 minutes after treatment, when I called her from Seneca, she sounded groggy.

It was 10:30 a.m. "What day is it?" she asked.

She had been sleeping and my call woke her.

"It's Monday and I'll call you later."

Let's be honest. Don't you find that sometimes, it you take a nap in the late afternoon and wake up at 9 p.m. you feel a little disoriented. "Did I sleep through the night?" you ask yourself. You search for a clock wondering, "What time is it?"

By Monday night the disorientation Angela felt earlier in the day had disappeared. It always does within a few hours of her ECT treatments, always with healing sleep. To the best of her knowledge, she is experiencing no permanent or even temporary memory loss whatsoever, thus far.

Time will tell. And I'll tell you.

Now, then. Let me know how you're faring. Comment. Comment. Comment. 

I've missed your voices. Your ideas. Even your criticisms. You inspire and stimulate me.

It's great to be back.

Speak soon!