Balancing Act.
When I was going through infertility and pregnancy loss, I told a therapist—a very prominent mind-body medicine expert in Boston—that I was getting by with a kind of perma-state of denial. I was mentally brushing my worries about getting pregnant under a cognitive rug, compartmentalizing to an extreme so I could function at work and in life. I asked her if that was “bad,” whether it meant I was delaying the inevitable “dealing with” the situation and it would be worse down the road. She surprised me by answering that denial is often a very healthy coping mechanism, that it’s proven to help people dealing with all kinds of calamities. It gave me a kind of permission to carry on and guess what? The outcome was the outcome (a positive one, albeit a long and winding road) and I saved myself some constant ruminating along the way.
Maybe that’s why it’s come so naturally to me to carve out a similar mental space for Duchenne, almost from the start. I’ve told myself that Charlie’s young, that he’s okay today. That we have time to find solutions. It’s allowed me to absorb the diagnosis as his mom, to do the things that I’ve needed to do in order to set him on the best possible course.
Every once in a while, though, something emerges that shatters the illusion and makes me take notice. That reminds me we’re on borrowed time until a definitive cure is found. This week, it is the heartbreaking loss of more Duchenne young men and boys in the community, one as young as twelve. Tomorrow is never guaranteed, and this is a jarring reminder that this evil disease can rear its ugly head in unpredictable ways despite the progress that has been, and is being, made.
The truth is, although I sustain what I think is a fairly healthy dose of denial that allows me to dwell in the moment, I am often really scared. And really sad. My heart aches at the knowledge that my broken DNA is responsible for Charlie’s suffering. I feel helpless and desperate to fight against the passage of time and the destiny that may await. I watch Charlie enjoying a moment so purely, his zest for life so complete, and I plea with God and the universe: Please. Let him live this life, fully and fearlessly.
It’s not easy to juggle these competing thoughts and emotions all day, every day. To wallow feels like a betrayal of the hope and resolve that I also have felt from the start. To pretend I don’t also feel the other feelings is disingenuous. It’s a balancing act, one I am still very much rehearsing on the regular.