I try to avoid writing these posts. Mostly because they scare my mother, who thinks I am utterly miserable, to which I wave my boxes of Xanax in her face and say “I’m okay, Mum!”
No, really, I’m okay, most of the time. Sometimes, I’m not though. Sometimes I just don’t know what to do with myself. My life feels like an impossible mountain I’ve been sent to climb with a spool of string instead of rope helpfully tucked into my pocket by the Universe. And as wonderful as it is to mark World Duchenne Awareness day each year because it brings us one step closer to the cure, it’s also involves me coming face to face with the fact that all is not right in my world. I’m not always up to that task.
Remember the movie Run Lola Run? Whenever the scenario doesn’t play out the way Lola wants, she goes back to the start of it to try again. This is the feeling I had the moment I was given Hermes’ diagnosis.
My brain just couldn’t process what I was hearing. My son has what? No, you’ve got it all wrong. That’s not what you were supposed to say. I came here today for you to tell me that the genetic test was normal, my husband isn’t even with me, that’s how ordinary this conversation was meant to be. You’re not supposed to be telling me my son has Duchenne. Go back to the start and tell me something different, tell me what you were meant to say, which is that everything is fine.
I think of that moment still, though not as often as I used to, because it represents the moment my life was cleanly cut from the path it was following and set on another one. For the first year or so after Hermes’ diagnosis, I obsessed over that moment. It played out in my head again and again, as if I was trying to retrace a terrible mistake I’d made and trying to work out all the various things I could have done to make it right. It was if my brain felt it was missing something, some small clue or detail.
Where was it? Where was the one thing I had missed that would unravel all of this mistake and put it right? Was it how the doctor’s assistant didn’t look me in the eye when she came into the room? Was it the two spots she pointed to on the paper in her hand she showed him, saying quietly “Here, and here”? What did that mean? What did “here and here” mean? Where was the clue? Was it in the way the geneticist clasped his hands in the seconds before he changed my life? Where was the clue?
If I could just find it, I’d unlock what had gone wrong and be able to set it right. That would be my Eureka moment. But even my frantic brain knew somewhere that that wouldn’t happen.
In my weak moments, I’m resentful of being reminded of Duchenne in my lives. Hermes is starting to struggle a bit more, and when I hear the impatient kids on the stairs of the slide behind him stomping their feet and yelling at him to move faster, I really want to let rip at them. Very, very rarely, I am angry with everyone else for being able to walk away from my life, when I have to shut the door behind them and go back to living it every day.
I don’t mind telling people about Hermes, but there are times when I’ve got so used to this reality that I forget the impact it might have. I’ll flippantly mention life expectancy, and the next thing I know the person I’m talking to is sobbing. Whoops! “It’s okay!” I say cheerfully “It’s not so bad!” Cue more sobs.
The truth is that often, life is okay. It’s fine. It really, truly is not so bad. We’re happier than a lot of people. Having such a shadow cast over our lives has made us appreciate the light much more. Eating a delicious slice of melon turns into this year’s landmark event – “remember the summer of 2016 when we ate that really delicious melon? Those were the days!” We save the seeds for planting later, knowing exactly that we’re much too neglectful of our plants for them to ever bear fruit. We’ll ignore that, and plant them anyway.
Our joy is in our life as a family and the friends who rally around us – even a small gesture like changing your profile picture to a Duchenne balloon means so much. So, despite it all, somehow we do find a way to be happy in our new reality, and for everything else, there’s Xanax.