When my older brother fell off his ten-speed coming home from middle school, he got a long white cast plastered onto his arm. Everyone in his grade drew pictures and wrote inside jokes in permanent marker, proving he was not only on the road to recovery but also infinitely cool.
A few years later, my best friend had an operation on her hip. She got a sleek line of scar tissue and fancy crutches that got her across the room faster than I could run. I know because I ran after her a lot, wanting her attention, her affection, her promise that she'd never outgrow me (which she did, soon enough).
The only time I ever had stitches was after getting a bunch of teeth pulled. Never broke a bone or lost more than a fingernail. I once had to sit out a dance rehearsal because I pirouetted into somebody's shoulder and bit my tongue hard enough to draw blood and tears. Still, not anywhere near as glamorous as a torn ligament or even a sprained ankle.
I could never prove that I was hurting. That I needed help.
A few weeks ago, I got to speak at a meeting of NAMI (National Alliance on Mental Illness). The room was small. As we introduced ourselves, there was no way to avoid eye contact, even though it felt like we were all naked.
My son was so smart. Now he can't read or write.
My daughter's been diagnosed with bi-polar schizophrenia. She won't leave her room.
I've been told I have OCD, but I don't know...
I'm a sufferer.
I'm a survivor.
I don't know what I am.
I'm just glad to be here.
When it was my turn, I shrugged and said,
"I wrote a book about OCD and I'm going to read a little from it."
I started with chapter one, which takes place when I am ten and my dearest aunt dies unexpectedly. It is the first memory I have of needing to solve this mystery of life and death. I trace a pattern in my wallpaper, which I did many nights as a child. This night I needed it to lead me to answers. I needed my finger to find a resolution.
This is the closest I have to a definition of OCD for me. Finding a pattern or ritual that, in the moment, seems to solve or resolve some anxiety. And then it doesn't. So I have to do it again. Faster. Harder. In a different language. While beating my fists into my chest. I need to find the magic code that stops anyone else from dying inexplicably. In my brand of OCD, it led me to hours of obsessive praying, anorexia and self-injury.
One of the most frequent questions I get at readings is, why do you think it took so long for you to get diagnosed? Or, why didn't someone step in to help you sooner?
At NAMI, a young parent answered this for me, much more eloquently than I'd ever been able to express it.
The thing is, mental illness doesn't look like anything. We can rarely point to where it hurts or name what's broken. If my son had a concussion from a football tackle, he'd be the hero right now. But there's something else wrong with his brain. Even his siblings don't know what to do with him.
I was so humbled and embarrassed hearing this mother's testimony. She wasn't asking for anyone's pity or attention. She didn't want a cast to wrap around her son's head. She just wanted to understand why there is still such a stigma about mental illness. Why depression or obsessions should just be "gotten over". Why so many people insist that whatever we cannot see, isn't really there.
I looked around the room again, this time trying to go slower, really studying the creases in foreheads, the restless hands and clicking jaws. I'd done exactly what this woman was bemoaning. Making my assumptions about who was here for what. Trying to label everyone damaged or sane.
You are a sufferer.
You are a survivor.
You are heavy/thin/obsessive/addicted/skittish/lonesome/angry/afraid.
Even though I should know better. Even though I try to reach out to other people with OCD. Even though I read Thich Nhat Hanh and chant in yoga class about relieving the world of pain. Even though I take 150 mg of Zoloft each night to help keep my prayers and my food and my breath steadier. Even though we were all in that room to find honesty and acceptance in all of our nakedness.
There is little that is glamorous or even quantifiable about mental illness.
But it is real.
And it hurts.
I thank the great people of NAMI for showing me how many faces it can wear.
