Tuesday, August 18, 2009

Why Are You Asking Me?

October and November tend to be weird months for me. Early October, 2006 saw the publication of my book: "Living Well with Depression and Bipolar Disorder: What Your Doctor Doesn't Tell You That You Need to Know."

The book represented a major personal triumph for me, but life is seldom that simple. It's amazing, in hindsight, how I didn't see it coming, but we never do. One day I was winding down from a round of book-related speaking engagements and radio interviews, making a mental note to pick up a Thanksgiving turkey, the next I was dazed and disoriented in a Red Roof Inn, suddenly single.

I had been married (for the second time) for nearly three years, living in central New Jersey. On December 1, ten days after my break-up, I boarded a one-way flight to San Diego, wanting to sleep and never wake up.

"Living Well with Depression and Bipolar Disorder" was the result of six years of writing on my illness. In January 1999, after a crushing round of severe depressions and a lifetime of denial, I was diagnosed with bipolar. I had been a financial journalist, and now I turned to writing about my illness, first for a website, then my own email newsletter, then my own website.

I was not afraid to write about my personal experiences, but first and foremost I considered myself a reporter. I went to the same conferences psychiatrists and researchers went to. I read their journals. I listened, I asked questions. I also listened to another group of experts, patients and loved ones.

I may have connected the dots in a way that no one else had before, but the book wasn't about me. I was simply passing on wisdom and insights I had learned from others and I had at least 300 footnotes to prove it.

But, in public, the audiences I spoke to had entirely different perceptions and expectations, which I failed to register for the longest time. For instance ...

NAMI's membership in large part comprises the parents of individuals with severe mental illness (mainly schizophrenia). These parents have struggled with a health care system that seems specially designed to fail their sons and daughters. Most have been told their kids will never get well. Then, they see me - me with a diagnosis - speaking to them on a very complex topic without notes.

For instance ...

DBSA is run by patients living with depression and bipolar. I'm one of these individuals. We all learn from one another, which can only work if we all accept each other as equals. Thus, an individual on disability brings the same insight and wisdom to the table as someone who has just been awarded a McArthur Genius Grant. But DBSA groups do bring in expert speakers, and suddenly I was one of them.

One day in the spring of 2007, at a DBSA group in Washington DC, someone happened to ask me this: "What do you do for your own recovery?"

Why on earth do you want to know? I could only think. I'm the same as the rest of you.

Ask me about the fine points of brain science, I wanted to respond. Grill me on the ins and outs of diagnosis and treatment. Diet, exercise, sleep - no problem. I had the expert answers at my finger tips and I didn't even need a life line.

Hannibal crossed the Alps with elephants, Abyssinia is what they used to call Ethiopia, and when Emil Kraepelin coined the term manic depression back in the early twentieth century he was talking about unipolar depression as well as what we now refer to as bipolar disorder.

I was stumped. It made no sense to me that someone else would view me as some kind of example of recovery. I blurted out something incoherent, and waited to be rescued by someone wanting to hear me expound on neuroplasticity or spell opthamologist or something.

I was still living in denial when I gave two presentations at a national DBSA conference that summer in Orlando. One of the organizers, without consulting me, had put on the program that I would be talking about recovery. Ha!

No way I was going to lecture people in how to run their lives. Ruin their lives, perhaps - I was an expert at that. But run? You gotta be kidding.

Recovery starts with knowledge, is how I began. Here's some cool stuff I learned, was the gist of what followed. The rest is up to you. Oh yeh, and I broke up one of the talks with a didgeridoo interlude. (You can check out why didgeridoos make perfect sense to me here.)

That's not the way you work yourself up from break-out speaker to keynoter, I learned. Or, for that matter, ever get invited back to speak again, not with two audiences primed to hear about recovery.

Apparently, there was this thing called a recovery movement. Recovery is for YOU to figure out, I wanted to scream. It has nothing to do with me.

But a funny thing was happening. I was changing. The person talking about my book in the summer of 2007 was not the same person who wrote it in late 2004-early 2005. Recovery is a journey, they say. Mine began one crazy October morning nearly 60 years ago when I literally forced my way out of a birth canal that my mom, on doctor's orders, had been blocking by holding her legs together.

Then life intervened.

Much later, on a weird November evening in New Jersey, a certain stage of my journey came to a precipitous and definitive end. A new stage was opening up. A leap of faith, one-way to San Diego ...

More to come ...


Gina Pera said...

So interesting, John! And well written!

I find a somewhat similar phenomenon when I give talks on how Adult ADHD affects relationships.

Even though I stress that ADHD is not a one-size-fits-all condition and "your mileage may vary," many people still want to know how I've dealt with it personally in my marriage.

The bottom line, I guess, is that we humans like stories. :-)

herb said...

“Recovery is a journey” as is one’s life.

For some of us it is bumpier with unexpected twists and turns.

“…but it is the journey that matters, in the end.”

Here’s hoping for you, me and others the road is smoother and more direct in the future so I can also better and more relaxed enjoy your writings.


Sherry Austin said...

I just started following you the other day. I really appreciate what you are doing.

John McManamy said...

Hey, Gina. That's what I'm learning - humans like stories, but I was still more comfortable telling other people's stories. In "Living Well," I reveal snippets of my life, but I also feature the voices of some 200 patients and family members, which is the book's strength.

Three or four months after I signed a contract with HarperCollins (Oct, 2005), I started doing weekly then twice-weekly blogs for HealthCentral. Suddenly I was writing from the point of view of how I get through the day living with mental illness, which was totally new to me.

Also, I was reporting on issues and developments as seen through my eyes. This was very different than the straight reporting I was doing in my Newsletter at the time. I wasn't totally comfortable putting a filter between the event or phenomenon and the reader, but I soon came to realize there were certain advantages to this.

By the time I started this blog at the end of last year, I was totally at home with using "I" in a sentence.

Sometime last year, I figured I would start working on a book on recovery. I would be telling my own story to a certain extent, but the backbone of the book would be other people's experiences and expertise.

Then I got talking to Therese Borchard at Beyond Blue. She convinced me that I needed to place myself front and center and make the book humorous. So now I'm getting started on a draft. We'll see what happens ...

John McManamy said...

Hey, Sherry. Many thanks, and welcome to Knowledge is Necessity.

Joshua said...

Hey John,

I just happened upon your blog and found that I agreed with your post that stated recovery happens for each individual separately. For a long time I felt like I was running in place, so to speak, until I started blogging. I was looking for connections with low functioning people at my rehabilitation clinic and not surrounding myself with articulate, high functioning, introspective and complex individuals that I have met in the blogosphere. You are definitely one of them. Congrats on your book. I too hope to be published one day and your work is truly inspirational for individuals suffering from mental illnesses all over the world.

Best Regards,

John McManamy said...

Hi, Joshua, and welcome. It's definitely important to surround yourself with individuals at your level of functioning and above. The exception is if you are in a helping role - which gives you the opportunity to develop a whole range of essential people skills. It's important for me right now to be around people who lead successful lives, however you want to define successful. If you want to be a good tennis player, you hang out with good tennis players - good luck on your recovery.