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'My story isn't over': What a new tattoo says about bipolar disorder

Bangor Daily News (ME) - 7/29/2015

July 29--LEWISTON, Maine -- Alex Stephens only needed about 15 minutes Friday morning to etch a perfect black semicolon on my left wrist. I knew it would hurt, and said so as we waited for him to begin.

"This is hardly the worst thing you've been through," my friend, BDN photographer Troy R. Bennett, told me.

True enough. Soon I bore the symbol that will remind me every day to continue my battle with bipolar disorder -- a battle I am winning.

In recent months, the semicolon has become a symbol for those with mental illness and survivors of suicide whose "sentence could have ended, but didn't." For my friend Jared Fiori, who also battles bipolar and who joined me Friday to get inked, "It will be a reminder, right there, that this can't end this way."

Every time I see my tattoo, it reminds me that despite the pauses -- episodes of depression and, less frequently, hypomania -- my life has taken, I've always continued.

Bipolar disorder, or "manic-depressive disorder," is different for everyone, but is generally characterized by alternating periods of crippling depression and euphoric mania or less intense hypomania, with some experiencing "mixed" episodes that, for me, are like agitated depression.

The National Institute of Mental Health estimates 2.6 percent of U.S. adults have bipolar disorder.

Throughout nearly 10 years as a journalist, I've watched people in all types of situations react when they hear the word "bipolar." Some think of Claire Danes' somewhat unlikely character on the TV show "Homeland," an unstable, occasionally medicated CIA agent. Others remember Nirvana frontman Kurt Cobain or Ernest Hemingway. More recently, people remember Robin Williams, the brilliant actor and comedian who also died of suicide last year.

Police and other public safety officials, who encounter bipolar disorder at its most intense and destructive, think of the delusional woman running naked across Main Street or the man suffering from psychosis whom they talked off a bridge. I believe most of these people are unmedicated or undermedicated, or are "self-medicating" with alcohol or street drugs to deaden their pain.

In fact, according to the National Institute of Mental Health, bipolar disorder has one of the highest suicide rates of all mental illnesses, with 10 percent to 20 percent of unmedicated patients taking their lives.

But here's the list I keep in mind: author William Styron; talk-show host and author Jane Pauley; former President Bill Clinton adviser Robert Boorstin; actresses Patty Duke and Carrie Fisher; artist Ellen Forney, whose wonderful graphic novel "Marbles: Mania, Depression, Michelangelo and Me" helped me explain my disorder to many people; and psychiatry professor Kay Redfield Jamison, whose best-selling memoir about bipolar disorder, "An Unquiet Mind," brought me through a lot of darkness.

'Diabolical discomfort'

I was diagnosed with bipolar disorder in my mid-20s after years of dramatic "ups and downs." During my junior year at the University of Maine, I ran 6 miles late every night through the deserted snowy cow pastures, matching my breath to Steve Winwood and The Who on my Walkman. The next fall, three days after arriving at college -- three days of nonstop hysterical phone calls home -- my dad drove back up the interstate to pack me and my stuff into the station wagon and take me home.

When I was better, I moved to Boston to work 70 hours a week at a consulting firm with future billionaires, spending every spare penny on clothes, shoes and extravagant Christmas presents. I abruptly left my next job at Harvard to waitress in a midcoast tourist trap because it was more fun, and spent another summer living in New York City on my American Express card while I dated a minor league baseball player.

At the height of my hypomania, I disappeared to a Mediterranean island for three weeks. I remember standing on the bow as the ferry pulled into the harbor at dawn and watching bioluminescent creatures dancing beneath the surface of the turquoise water.

No one knew where I was until I called my mom and dad from a New York hospital. As they had many times previously, my parents sped to my rescue and took me home -- this time, to a hospital.

I asked my mom the other day what she remembers of that trip, or others like it. At first, she didn't seem to remember much. I suspect she and my dad have blocked out a lot of the worst of it. My therapist said we all have symptoms of post-traumatic stress.

"We'd never even heard the word [bipolar]," my mom said of those years when it seemed one drama followed another. "We just thought it was normal teenage rebellion."

In "Marbles: Mania, Depression, Michelangelo and Me," Forney perfectly portrays mania as she describes a night walking through the snow:

"The sidewalk sparkled like a fairyland. This was an elegant nod of approval from the universe ... it was perfect. Exponentially perfect. Everything was magical and intense and bursting with universal truth."

It's impossible to describe the despair of the depression that inevitably followed.

In "Darkness Visible," Styron wrote, "It is not an immediately identifiable pain, like that of a broken limb. It may be more accurate to say that despair... comes to resemble the diabolical discomfort of being imprisoned in a fiercely overheated room. And because no breeze stirs this cauldron ... it is entirely natural that the victim begins to think ceaselessly of oblivion."

When depression creeps up on me, a lead blanket covers my shoulders, leaving me utterly exhausted, desperately sad and unreasonably convinced that, despite whatever wonderful things might be happening in my life, there is simply no point.

Interacting with anyone is excruciating, and I misinterpret and overanalyze other people's words and actions. Convinced I'm a burden, I isolate myself from everyone, prompting others -- who don't know how to help -- to pull back, too. Dozens of friends from the various chapters of my life have sought shelter from the storm -- and truly, I don't blame them. I wouldn't deal with it if I didn't have to.

"Everything feels heavy," Fiori, a comic book artist, said Friday. "I feel as if I have 1,000 sandbags strapped to me. And it snowballs ... I don't want to get out of bed and then I feel terrible about the fact that I've wasted half a day, and I don't want to be awake."

Rules to live by

The years before I was diagnosed took a toll on every aspect of my life and the lives of my family. I know from statistics alone that I'm lucky to have lived through it.

Once I was diagnosed, I began treatment including medication and therapy with a counselor I still see regularly -- a woman who has saved me many, many times. I live by a long list of rules developed carefully through trial and error and enforced, when necessary, by my force-of-nature mother:

How ARE you? Are you sleeping enough? Are you exercising (that one's tough)? Did you go to yoga?

We all watch carefully for any small rustle of the leaves that might indicate the wind is changing.

The rules also include a frequently "tweaked" chemistry experiment of prescription medications -- from Abilify to to Zoloft -- with side effects almost as bad as the illness.

During a six-month stint on one drug, I gained 60 pounds. The "gold standard" mood stabilizer, lithium, dulls my edge. Adderall, a stimulant used to treat ADHD, boosts my mood, but can be dangerously addictive for some. Lamictal is a miraculous mood stabilizer, as long as you don't get the sometimes fatal rash.

Since 2006, I have reported on the midcoast area, first for The Times Record and, for the past 2 1/2 years, for the Bangor Daily News. I've written about murder trials and heroin busts, elvers, the defense industry and recovering addicts. I've gained the trust and respect of local and state leaders, law enforcement and community members. I even won several Maine Press Association awards.

And then, a couple of years ago, I found myself exercising a lot -- sometimes two and three times a day -- and not eating much because I wasn't hungry. Weight -- a lifelong struggle -- seemed to fall off. Amazingly, I didn't need much sleep, and my writing seemed (at least to me) brilliant -- the words came so easily.

I had fun. I was fun. I thought, "This is how it's supposed to be." If I suspected I was unstable, I blocked those thoughts. After years of depression, they could pry my euphoria from my cold, dead hands.

But then, as always, the live wires short-circuited. My brain ran too fast. I couldn't slow it down. And I crashed. The fun me -- that up-for-anything, spontaneous, carefree me that I miss every day -- was gone.

This time, rather than explain away missed work as "headaches," I told my newsroom director: I have bipolar disorder. Most of the time it's under control. Most of the time I work hard, write carefully and with compassion and live my life. But sometimes, despite my best efforts, I get sick.

Then we sound the alarm, call out reinforcements -- every cliche you can conjure. We adjust medications, step up the therapy and step up the yoga. And, eventually, I get better. Sometimes it's days. Sometimes it's weeks. Sometimes it's longer.

As grateful as I am for "better living through chemistry," and as religiously as I've taken medication since I was diagnosed, I desperately miss the "fun" of hypomania, when I was brilliant, funny, beautiful and invincible -- or at least I thought so. This handful of pills each day, plus the the rest of the rules, may keep me from complete despair -- most of the time -- but it also eliminates the indescribable magic of hypomania.

"I know it's not good for me, and I know I shouldn't love it," Fiori said. "But when I am manic, I feel like a god. Ideas and inspiration comes at me like belt-fed weapons."

That's the thing about bipolar disorder: It's different in everyone and, unless someone becomes dramatically sick, you likely won't even know they cope with it. Because they're working 9-to-5 jobs. They're swiping their ATM card in line at Hannaford to pay for eggs and coffee. They're authors and musicians, advisers to presidents, reporters interviewing you about your new business or relating the testimony at a murder trial.

I still have days when I don't want to see anyone, days when I argue with everyone and doubt everything anyone tells me, days when my brain just won't work like I want it to. On those days, I retreat.

But some days I wake up bursting with ideas I can't wait to write about, planning a roadtrip with friends or building a Lego version of downtown Freeport with my nephew.

"This is the Beth I love," my friend Emily said the other day after a slew of particularly witty and sarcastic texts. "Why can't you always be this Beth?"

I wish I knew -- and so does she. I asked her what keeps her around when so many people over the years have been unable to stand the drama.

"I can tell almost immediately by the way we chat in the morning if it's a good day or a bad day," she said. "Seventy-five percent of the time you're the Beth that I love -- witty, sarcastic, caring. Even when the other side of you is rearing its ugly head, I remember the good parts."

Project Semicolon

Project Semicolon was founded in 2013 by Amy Bleuel to honor her father, who died from suicide, and to talk about her own battle with mental illness.

"In literature, an author uses a semicolon when they choose not to end a sentence," she told Wisconsin Public Radio. "You are the author, the sentence is your life and you are choosing to continue."

Hence the semicolon on my left wrist.

Bipolar disorder is exhausting. It's frustrating. It's scary as hell. It's embarrassing. It's overwhelming.

But every morning, as I dutifully take my colorful array of medication, and (almost) every night, before I get eight hours of sleep, I'll look at my semicolon and remember that, while I may pause now and then, I'll keep going.

___

(c)2015 the Bangor Daily News (Bangor, Maine)

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