I try to get out and run or walk to work – usually doing my best to power my own transportation. During those self-powered jaunts and walks to work I usually consume a podcast or two. It varies from the nerdy stuff, to celeb stuff to npr like stuff – one I tend to keep up with is fresh air. Not every episode since I find some incredibly boring or very US centric but usually every other episode I find a winner. I also run a month or so behind cause I have too much to do.
One of the last episodes that I listened to was this one. A father’s quest:
When he was 8 months old, Walker Brown was diagnosed with cardiofaciocutaneous syndrome (CFC), a rare disorder that left him with severe cognitive, developmental and physical disabilities. By the time he was 3 years old, his father says, his medical chart was 10 pages long.
Now 15, Walker wears diapers and an apparatus on his wrists that prevents him from hitting and scratching himself. Developmentally, his age is between 1 and 3, and he will require constant care for the rest of his life.
“He can’t speak,” his father, Ian Brown, tells Fresh Air‘s Terry Gross. “He can’t do a lot of things — he can’t swallow, so he’s fed through a tube. We don’t know how well he sees or hears. We know he sees and we know he hears, and I think it might be getting a bit better, but because he can’t talk, he just has no way of rationally communicating — so we spent a long time trying to figure out other ways to connect.”
Stories like this quickly smack me upside the face to remind me how good I have it. I am healthy, my family is healthy and I have a good time. Not saying Ian Brown does not but I know he has much more in life to deal with then I do.
I get stressed over the PPT (keynote) I need to finish, the tickets I need to book, the long lines at the Jakarta airport and lamenting the inability to get a cab in Singapore when it rains. That kind of shit. I have and will experience more tragedy in my life and I might be diagnosed with cancer next week but I also know that I am incredibly blessed.
Most of us are and we need to live our lives knowing how we good we have it.
Ian’s book, The Boy in the Moon, is out and I am tempted to pick it up if only to remind myself of my fortunate life.