Monday, April 11, 2011
Following is a talk I gave six weeks ago at a NAMI San Diego Walk kick-off event. Our Walk takes place April 16 ...
I walk because I am haunted.
I am haunted by my childhood. By the strange looks from family members, from kids in school. They knew. I knew. Even way back then, I wasn’t normal.
I am haunted by my adulthood. A bright promise denied. They knew. I knew. I’m normal! I wanted to shout.
I’m haunted by what I encounter. A question by a father about his kid who refuses to acknowledge his illness - one I can’t answer. Queries I get from my readers - their loved one is acting strange, very strange. What is wrong? More questions - my doctor won’t listen, my insurance is running out. What the hell is wrong with me?
I’m haunted by a world that doesn’t give a damn. People who are supposed to be helping us who tell us that we have a highly treatable illness that at times is barely treatable, and then turn around and say we should be happy where we are - stuck in a miserable half-life, alone, left to fend for ourselves.
I’m haunted by the fact that everything I read or listen to bears no relation at all to my world, your world. Isn’t anyone paying attention? Doesn’t anyone give a damn?
I’m haunted, you’re haunted. Everyone in this room is haunted. That is why we come out in the rain on a Saturday. That is why we get on the phone. We make noise. That is why we show up at meetings. That is why seven weeks from now, rain or shine, we will show up. We will walk. A family, bound together by experiences that haunt us. We will walk. We will send the world a message.
So much to do, so few of us. A good deal of the time it seems hopeless. But we get involved, anyway. Anyway we can.
No one - absolutely no one - should have to endure one day of what we have been through. Not one day. We will walk.
I will conclude with this:
Back in 2004, when I was newly into my second marriage, I was facilitating a DBSA support group in Princeton, NJ. In walked Kevin, exuding a goofy charm, baseball cap on backward. But there was something about his presence that indicated he was no mere goofball. The others in the room felt it, too.
Over the weeks, I couldn't help but be impressed by the way Kevin carried himself. He would walk up to newcomers and introduce himself and start up a conversation. In the group, he was a great listener, dispensing the wisdom of a sage, leavened by a keen sense of humor.
It was amazing to observe him with people much older. At once, he was deferential, compassionate, and exuding great authority. You simply forgot you were talking to someone much younger. You simply wanted to be around him, laugh with him, seek advice from him. He had his setbacks, his dark moments. Yet, over time - in group, over coffee, over sandwiches, hanging out - I watched him blossom. With his extraordinary people skills, the sky was the limit.
In late 2006, my marriage broke up. Kevin was the first to offer me support. He also reached out to Susan.
Suddenly, I had my life in seven or eight FedEx cartons and a one-way ticket to San Diego. I popped into the DBSA group one last time. Kevin was facilitating. He gave me a heartfelt tribute. I felt the goodness in the man. Goodness, true goodness. That was the last time I saw him alive.
He had so much to live for, so much to offer. Yet, on a miserable muggy New Jersey morning, his brain tricked him into believing otherwise. He was 28. Years later, Susan and I, plus all those he left behind, are still dealing with it.
I've been suicidal. So have most people with this illness. We fully understand, yet - we totally don't understand.
Kevin, you still shine a light on the world. Nothing - nothing - is ever going to extinguish it.
That is why I walk.
Our Walk takes place this Saturday - April 16 - in Balboa Park - 6th and Quince - at 8AM. Please come, if you live in the area, and bring your family. If you wish to support me in my walk, please go to my NAMI San Diego Walk page.