The Big Tell
Stop all the clocks, wrote WH Auden, cut off the telephone; prevent the dog from barking with a juicy bone. He was talking about a death, but when I heard that my beautiful boy had a random genetic error that would take and take and take until he was no more, I too wanted things to break, to unravel. I wanted to scream my pain, broadcast it until everyone would know what the universe had done.
And yet. I wanted no one to know. To say it aloud was to acknowledge it, make it so. If I just held it close, somewhere protected and beyond reach, I wouldn’t have to experience the truth of it again and again and again. I wouldn’t have to look at it from all angles through 1,000 sets of eyes.
How do you share something so cruel, anyway? Social media is efficient, but it’s supposed to be for cotton candy afternoons with toothy babies, silly memes, new dresses. I didn’t have room yet to hold others’ sadness alongside my own. I recently saw something that equated grief with shame, and I think the commonality there is regret. I regret to inform you that our boy is broken.
My close friend Lis stepped in to break the impasse and start the sharing for us with a local fundraising run that helped spread the word in our community. She saved me from a lot of awkward grocery store encounters. How do you work something like this into a social conversation? How are you? Well…. There’s just no easy way to answer that when something like this lands at your feet. Lis’ fundraiser was the first step toward finding my voice, which spoke first through written words, as it tends to do. It was important to me to lead with hope, because that has quite literally been the saving grace. Trust me when I tell you that if science were not on our side, I would have actually stopped the clocks; you’d find me wandering the halls like a Miss Havisham-style specter. And I also wanted to fully create Charlie’s Cure before announcing this new and big, brutal thing, so that there was a hub through which we could more completely tell our story, raise awareness, promote research and harness power through action.
Gloria Steinem said, “The truth will set you free, but first it will piss you off.” It turned out that by the time I was ready to share this monster truth with the world, I was also full of fight, ready to go to battle in earnest, and in every theater of war available. It was the realization that the work ahead to cure Charlie cannot wait for just the right words or thoughts or feeling fully comfortable asking for help. Duchenne has robbed this mama of that advantage, but the good news is that the big tell has only made me more resolved to rob Duchenne right back.