It was midnight and tears kept coming. All I could think about is how puffy my eyes would look in the morning. And the other thing I couldn’t get out of my head was the image of my brother Scott in his long khaki pants, sweat-drenched tee-shirt, jacket and ill-fitting shoes wandering around my sister’s backyard. Actually his shoes fit fine. It’s just that even though they were slip-on shoes, he didn’t quit have his heels all the way down into either shoe.
It was the first time I saw Scott since his ten electroconvulsive treatments (ECT), otherwise known as shock therapy. In January, his psychiatrist from the nation’s top mood disorder clinic at Mayo in Minnesota suggested ECT as the best treatment option for his severe bipolar that was resistant to the plethora of medications he tried over the years to combat his suicidal thoughts and manic behaviors. For two and a half weeks Scott underwent ECT in a daily routine of IV sedation, induced seizure to the brain, and sleeping.
At the beginning Scott was hopeful and optimistic that finally there was a treatment for his brain disorder that would make a dramatic difference to improve his quality of life. We joined him in this hope.
That’s why I cried so hard at midnight when I let myself feel how heartbreaking it was to see him two months post ECT. He explained to me that he felt the ECT “took something out of him.” And that he’s experiencing new symptoms of severe anxiety. That’s why he was wandering around the back yard, he said, he couldn’t stand still. He feels so embarrassed about his behavior that he is isolating himself, skipping his regular twelve step meetings. Scott says he feels like a failure because the ECT didn’t work.
“You didn’t fail, Scott,” I said to him.
We failed Scott and the thousands like him who live with chronic and severe mental illness. We’ve failed because we have not acted with urgency to research the human brain or prioritized searching for a cure for brain diseases.
With puffy eyes the next morning after seeing Scott, I stood before a church group breaking the silence about mental illness, family, and church. I testified to the power of faith to help carry us through the shadows of mental illness. After lunch we entered into small groups to talk about what it’s like to live with mental illness, to have a child with mental illness, to have a parent with mental illness or to have a partner with mental illness.
At the end of our day together, as I gathered up my notes in the church hall, two ladies came up to me. I’m guessing together they were over 160 years old. One said, looking at me with her soft blue eyes, “You are brave.” And the other one said, “Oh, yes, very brave. We know. And we’re a lot older than you.”
Crazy brave is what I am. But the more I break the silence about mental illness, the less brave I feel. I feel sad and angry and disappointed and frustrated about the depth of suffering experienced by people with mental illness.
I also feel deeply grateful to have such sacred conversations with people who are as desperate as I am for hope, for light and air to break through the silence, stigma and shame.
Brave? Maybe. Crazy? Definitely.
I’ll continue to be crazy brave until I don’t have to anymore.