Thursday, October 23, 2014

The Third Week of October

Some Memories Never Fade

One evening just before sunset in the third week of October 2014, I walked down the hill from my new home to the soccer fields. The Boise foothills glowed rose and gold in autumn sun’s last light, and the manicured emerald fields rang with cheers and groans. My oldest son once played on these fields, in another life, before my divorce. I have since learned that memories can change.

The long lean years of dingy apartments, of rice served at every meal, of every phrase qualified with “if the good Lord’s willing and the creek don’t rise,” those years (God willing!) are over. To walk out of my home—our home—to see those soccer fields, those glowing foothills, to look back at the picture window, the piano, the wall of books (his and mine), was a dispensation, a manifestation of grace.

Twenty years ago, in the third week of October, my father died. He was 50.

I’m still sad about his death. With the removal of the bereavement exclusion in the DSM-5, the fact that I still tear up twenty years after losing my father to cancer might indicate I’m depressed. I’m not—I’m just sad. Sad to think of the grandchildren who never met him, the hikes we could have shared, the conversations about faith and life and books and science—his avocation—that would have kept us up late at night.

That’s one of the challenges facing modern psychiatry. What type of grief is normal? To me, it seems that psychiatry, in attempting to answer this question, has barely moved beyond augury or astrology. As I walked around the soccer field that evening, a bright copper coin stood out in sharp relief against the sidewalk. I stopped to retrieve it, certain (as I always am when I find pennies) that it was a sign. Our silly brains see patterns in the flight of birds, in sheep entrails, in spare change on sidewalks.

The year my father was diagnosed with cancer, I learned a German word that has stuck with me when all the other German words I learned in college have fled. Unheimlich. This cognate’s meaning can be easily guessed—heimlich for “like home” or “comfortable,” unheimlich for uncanny. It’s the discomfiting sense of being a stranger in a land that should feel familiar.

That’s how I always feel in the third week of October. We can be orphaned at any age: I was orphaned at 22, on the cusp of my adult life, not quite ready to put away childish things or to acknowledge the reality of death. As I thought of my father, the bright penny’s startling appearance banished the ghosts and brought back a sense of comfort, of belonging, of home.

Gazing at the soccer fields, clutching my copper token of the universe’s momentary good will, I was transported suddenly into a present-tense past. I see myself at nine, my daughter’s age, my hair in two braids, standing on the lawn outside our home in Pennsylvania. It’s my birthday, and I’m wearing a leather softball glove, still stiff with newness. My father stands across the way, a white ball in his hands. “Was it okay to get you this?” my father asks. “I wasn’t sure if you would like it. I mean, you’re a girl. I mean, a wonderful girl! You can be anything you want to be!”

My father loves sports—football, baseball, basketball. I’m his oldest child, and already, I’m more of a book girl than a baseball girl, which doesn’t seem to disappoint him in the least. His own father died when he was just seven years old, so he is always trying to make sure that everything is “okay,” that his performance as a father is meeting our needs and expectations, that we know we can give him honest feedback. 

Standing in the yard with him playing catch, I know, even as a child, that my father’s gift—what he himself wanted as a nine year old—is the best possible gift he can give me, even though I’m not particularly athletic. As the ball connects with my mitt, a satisfying thump, I feel the love my father has for me radiate up my arm and all through me.

And that present-tense moment, a father tossing a white softball to his nine-year old daughter years later on the soccer fields in Boise, Idaho, is still happening, and was always happening, and will happen forever.

Monday, October 6, 2014

Singing to End Stigma

This week, forget the ice bucket challenge and think karaoke!

My son has bipolar disorder. Note: he is not bipolar. He has a serious mental illness, which he prefers to define as a "mental difference." But he wants the same things any kid his age wants: friends, a chance to score a goal on the soccer field, good grades, top rankings in Halo. With the right treatments and supports, he’s been given a chance to reach those goals.

“If people meet me first and get to know me, then they find out later about the bipolar, it’s no big deal,” he told me when I asked him how stigma affected him personally. “But when they hear bipolar first, they think, ‘Oh no! He’s a bad kid!’ And I have to work that much harder, if I get a chance at all.”

In a series of “mom chats” with my friend Janine Francolini of the Flawless Foundation, I asked mental health advocate Ross Szabo, who manages his bipolar disorder successfully, what he would tell my son about living with mental illness. You can watch his response here. Ross stressed the importance of self-compassion. I think he’s right: above all else, people who struggle with mental illness (or as my son likes to call it, mental “differences,”), have to develop a lot of compassion for themselves, because they often don’t get compassion from others. And as his mother, I can attest to the fact that parents don’t get much compassion either: when your child is in a psychiatric hospital, no one brings you a casserole.

One depressing fact: even though anti-stigma campaigns have made people more aware that mental illness is a brain disease, those campaigns have thus-far failed to budge the stigma meter long term. I think that both stigma and the resultant discrimination against people who have mental illness are the direct consequences of our society’s inhumane decision to replace mental institutions with another, worse kind of institution: prison. Treating people who have mental illness by sending them to prison, or even to “mental health court,” reinforces the idea that mental illness is a choice or a character flaw. We would never treat people who had a cancer diagnosis by sending them to jail.

A few months ago, the ALS ice bucket challenge was all over my Facebook feed. I was challenged, and I refused to participate. Not because I’m afraid of a little cold water (I will neither confirm nor deny that I have occasionally enjoyed a post-hike au naturel dip in some of Idaho’s lovely and bracing alpine lakes). Not because I don’t think that ALS is a serious disease that deserves our attention, or that I shouldn’t personally contribute to the cause.
My book The Price of Silence about parenting a
child with mental illness is available at
independent bookstores like Iconoclast Books.

I didn’t contribute because you never see things like ice bucket challenges for mental illness, to fund treatment before tragedy. But this week, my kids and I decided to participate in the Children’s Mental Health Network Karaoke Challenge, issued by Linette Murphy, a fellow mom and advocate. I am fortunate to call Scott Bryant-Comstock, CHM Network director, a friend, and I have been honored to participate in a series of dialogues about HR 3717 and how we can fix our broken mental healthcare system.

I’m also planning to use every social media channel I can this week to join my friends in fighting stigma. “When it comes to mental health, silence is not golden.” This is the theme of a story-sharing, stigma-busting campaign led by the International Bipolar Foundation and other groups to fight the stigma that affects people who have mental illness. Starting Monday, October 6, use the hashtags #BustTheStigma and #SayItForward to share your stories of living with mental illness and working toward mental health. 
Because the Price of Silence is still far too high for children, families, and communities.