I have been so focused on thinking I can help save my son’s life that I am avoiding, perhaps evading, mine and his actual current lives. I’m not getting my work done. I don’t eat well. I hardly get outside or exercise anymore. I feel mentally exhausted and frustrated by the time evening rolls around and I lay awake most nights crying. Those dark, lonely hours, reveal the unbearable pain that hides in the shadow of hope during daylight. Maybe reality is the opposite of hope?
Here’s the irony: Most of my family and friends think I have finally recovered from recent troubled years. “The return of Dave,” we jokingly call it. But no. I just traded one addiction for another; one obsession for another; one form of escape for another.
I think often of the times I spent with Cory before his diagnoses – all the adventures, dreams, hopes, plans, expectations, and happiness. Things were different then. Now it seems I always have the disease in the back of my mind; I have his eventual decline and death in the back of my mind. It won’t go away.
Here’s what hope led me to: I set up a website and a blog; made several Facebook pages and created a YouTube video I naively hoped would go “viral.” I created a Change.org petition to George Clooney pleading for him to watch the video and help. When my son recently answered an interview question choosing singer Katy Perry as one of three people he would have dinner with, I sent her fan club an email asking if she would actually have dinner with him and help the cause. I tend to be an obsessive, compulsive extremist. I keep trying to hit one out of the ballpark. I feel desperate.
It doesn't help that I regret not spending more time with him than I did over the past 12 years; or that I now live 1,049 miles from him and only see him in photos and on Skype. (Website, YouTube, Facebook, Skype . . . I have an electronic relationship with my son. It's like watching a movie. I keep hoping for a happy ending.)
I tried to get hold of Liza Minnelli. In 1985 she won a Golden Globe Award as best actress for her portrayal of Mary-Lou Weisman, the mother of a boy named Peter who died from Duchenne in 1980 at the age of 15-1/2. The movie, called “A Time to Live!,” was based on Mary-Lou’s book, “Intensive Care: A Family Love Story.” I contacted Mary-Lou, proposed the idea we get hold of Liza (they worked together and bonded on the movie set) and see if we could organize some sort of fundraiser around the book, the movie, Mary-Lou and, of course, Liza. Mary-Lou liked the idea and wrote Liza a note. We never heard back.
I am desperate. And now I think of the movie, and the book (neither of which had a happy ending), and Peter, and Mary-Lou and other parents who lost their sons. Then it hits me: I am going to be one of those parents some day. Sometimes I feel insane.
Mary-Lou wrote a guest blog for The Cory Story, which I called “Raising Hopes: (For Pete’s Sake),” in which she wrote: “The difference between us, and boys and their families affected by Duchenne today, is that today people can afford to have hope.” Yes, it’s different than in Peter’s day: Deflazacort has slowed the disease for Cory; treatments and cures seem “right around the corner” (or so I am told); clinical trials are underway, with promising results. (I use that line a lot when soliciting support. Sometimes I believe it.) He's gotten heavy. He falls down sometimes.
One of the problems with hope is that I hang onto the notion that he might be okay. The cure will come just in time! Cory and I will someday be backpacking into remote, wild country together laughing about back when we thought he would end up losing all muscle use and dying young. Thank you Mr. Clooney! Thank you Ms. Minnelli!
And then late at night it hits me. My son is going to end up dying. How arrogant to think I will escape the fate of all the other parents who lost their wonderful, beautiful children whom they loved as much as I love Cory.
Nobody is going to ride in on a white horse.
Perhaps hope is just an accepted and encouraged form of escape and denial. I’m not sure I can face Duchenne -- I love my beautiful boy Cory too much to face reality.
But is that love? Am I being naive, arrogant and perhaps even selfish by not accepting reality? Are hope and truth compatible?