Julie and I watched a remarkable documentary on The Learning Channel called “The Boy Whose Skin Fell Off”. Remarkable not because it was some boring scientific expose on a rare genetic disease called ( ), but because it showed how great the human spirit can be. The subject of the special, Jonny Kennedy, was 36 when he died from this disorder. Here is the synopsis from TLC’s website:
Thirty-six-year-old Jonny Kennedy was born with a terrible genetic condition called dystrophic epidermolysis bullosa, which meant that his skin literally fell off at the slightest touch, leaving his body covered in agonizing sores and leading to his final fight against terminal skin cancer.
In his last months, Jonny decided to work with a filmmaker to document his life and death. The result is a film that tells the uplifting, confounding and provocatively humorous story of an amazing man on a mission to make his final days on earth memorable
While it did show the horrific effects of this disease, it also showed this man trapped in a boy’s body accepting his fate and living each day to fullest. Yes, it was sad, but Jonny was a wily man and the special was full of humor… lots of laughs. I recommend everyone trying to watch this special. Be warned, though, there are a couple of graphic scenes showing his sores.
After it was over, both of us couldn’t help but feel there were some parallels to what has happened with Karyn’s mother. And the life affirming message that Jony gives is one of hope. That there is a better place after this world. How else could one endure such pain and survive. I know I thought of Jacob many times during the viewing. I pray that he never experiences pain as grave as what we saw. I hope that he has a relatively normal life and lives to be an old man. We don’t want him going through life thinking that his is limited because of his illness.
Appropriately enough, yesterday was the official day of my marathon training. I ran two miles in the morning in a little under 30 minutes. I am using a 3/1 run/walk ratio. So far, I don’t feel much pain in my knee and my back pain seems to have subsided for the time being. Knowing that I’m going to commit to this race again has cleared my head, in a way. Suddenly I’m thinking about what foods to eat. How to limit my snacking, and when I should be stretching. And, of course, I’m thinking about the letter I have to write.
This has been a hard year for us. Two prominent deaths. I thought about Matt again today. I read an article that mentioned Dylan’s “Love Minus Zero/No Limit” and I decided to throw on the “Bringing It All Back Home” LP I have in my closet. As the vinyl crackled and the songs played back, there I was again, in my parent’s basement back in ’92.
For a week straight, Matt and I hung out down there, drinking and listening to Dylan music. This record in particular was on a lot and just the sound of those songs brings back Matt to me. I guess Matt embraced life. That’s what I’ve been told. Personally, I thought he was reckless after he was diagnosed with diabetes. But I didn’t really know him for that period of his life… his last few years. The Matt I will remember is the man who taught me to play “Book of Dreams’ on the guitar so I could serenade Julie and propose to her. He will be the man who stood by me in my most difficult times of childhood and adolescence. And he will be the man who guided me through some dark, uncertain times before I met Julie.
Steve called again tonight. I feel like he and I talk so much more than we have in the past. I am so glad about that. I think Matt’s death has reminded us of how fragile our lives are and how important it is to maintain a degree of connected ness with the people we love. I wish I’d been able to reconnect with Matt.
The last night he was in North Olmsted back in ’92 before he moved to Seattle, we met at some shitty dive bar to have drinks. As usual, I played DJ and selected some songs I thought fit the spirit of the night. I found a live version of Springsteen’s “Bobby Jean” and those lyrics seem fitting now:
“Well I came by your house the other day
Your mother said you went away
She said there was nothing that I could have done
There was nothing nobody could say
Me and you we’ve known each other
Ever since we were sixteen
I wish I would have known
I wish I could have called you
Just to say good-bye, Bobby Jean”
How does Matt tie into the first item of this entry? I’m not sure. He died alone. I guess that’s very sad to me. He loved company. He loved people. But I’m not sure, in the end, he loved life. I don’t know.
I believe we’re all here for a purpose. Can we teach each other something? Can we help each other? I hope I can help people continue to understand about Cf. I hope I can help a cure be found. But I believe my most important purpose is to guide my kids to become better people than I ever will be. To make them better humans so that the world can become a better place.
Man, does that sound corny.