But the real impetus for picking it up this month was that Ian Brown was going to be at the Sleeping Giant Writers Festival in August, and I had signed up to attend his session. Unfortunately, when I got home last week, I had a phone message from the festival telling me that Ian Brown was not going to be able to attend the festival, and I would have to choose a different session. I am disappointed about this (his session was the primary reason that I had signed up to attend the festival), but very glad that I have read this book.
Fourteen years ago, on June 23, 1996, Walker Brown was born with severe physical and intellectual disabilities that were later diagnosed as cardiofaciocutaneous syndrome (CFC), a very rare genetic condition. This book is his story as told by his father; as well as his father's story of trying to get to know and understand his son.
Walker's father does everything he can; from genetic testing, to meeting with researchers, to an MRI scan, to meeting with parents of other children with CFC; in order to learn about Walker and his abilities and disabilities. But in the end, it is actually his interactions with Walker and the people around him who love and care for him, that teach him about his son.
What really got to me was the poignancy of this story. The joy and the despair (at times) and the love and the sorrow. I had tears running down my face at times; and I laughed out loud at times. And the authors unique voice shone through at all times.
What I didn't like about this book was that I couldn't determine any structure. The chapter divisions seemed almost random; and the story was told neither linearly nor by topic. I don't know if this was deliberate, but I finished the book feeling as though I had been going around in circles and arriving (almost) back at the beginning again. I say almost because along the way, the author does have several insights into himself and his son.
But what I will remember from this book is not the structure, but Walker and the people who love him. I am going to close with a long-ish passage from the end of the book that seemed best to convey the message of Walker and his story.
These days, I have a fantasy of my own. In my fantasy, Walker and people like him live in a L'Arche-like community, with the help of assistants. It's a beautiful place, in a beautiful spot, with a view of the sea or the mountains, because for once, in this place, it isn't just those who can afford them who have access to the best views, but people who might need beauty even more, because they live with so much less. In my fantasy, this village is owned and inhabited by the disabled, on their schedule, at their pace, according to their standards of what is successful - not money or results, but friendship, and fellow feeling, and companionship. In my fantasy, it is the rest of us, the normals, who have to be "integrated" into their society, who have to adapt to their pace and their place. I can leave, I can go back to my more pressing and even more interesting life, but I can also return to live with Walker, as Walker lives - slowly, and without much of an agenda beyond merely being himself.Because in my fantasy lots of people want to visit and live in Walker's society for extended stretches at a time. Composers, writers, artists, students, MBA types doing their doctorates in business administration, researchers, executives on sabbatical - we too can enjoy the privilege of living in Walker's village for a few weeks or months at a time, in pleasant rooms of our own where we're encouraged to pursue our work, our art and our studies. Our only obligation is to integrate ourselves into the disabled world by eating lunch and dinner with them, and, once a week, by giving one of the residents a bath. The rest of the time we are free to think and write and paint and compose and analyze and calculate. But by then the disabled will have done their work, accomplished their goals, and changed the way we see the world. We will have benefited far more that we have benefited them, but they won't mind. Walker will have made his contribution, by simply being there. As I say, a fantasy.