When my now 5 year old was diagnosed with Duchene Muscular Dystrophy, a progressive muscle wasting disease ages 2.5 years old, my relentless late night googling lead me to various fundraising pages based on doing incredible things to raise money for the research and awareness around the disease.
Overwhelmingly, these fundraising challenges were based on physical activity.
For a long time, I found myself struggling to understand this.
It seemed almost in bad taste to raise money for a progressive muscle wasting condition by doing the very things that are impossible to do if you have a progressive muscle wasting condition.
And then I started to run. I set myself one of the very challenges that I had felt so uncomfortable with just a few months previously.
I wanted to run a half marathon and I wanted to do it to raise money for Action Duchenne, the charity who have supported us since Sebastian’s diagnosis.
Since then I have run another half marathon and am due to run my first full marathon in April this year.
Why? Because instead of being in bad taste, I think every single time I run that I have a body that works. I feel my muscles work and ache and recover and get stronger. I am conscious of the complex biology that allows by body to train.
It might not make sense, but acknowledging this is a way to process the ongoing grief I feel that my son’s body does not work as it should, that his muscles don’t repair themselves, that they get weaker rather than stronger, that he will never feel both the freedom and the achievement that comes from physically training your body.
I run to pay homage to the fact that my son never will. It is a very physical manifestation of a very physical grief.
Not only this, but it gives me a way of gaining control of a situation I which I so often feel entirely helpless. I can’t fix Duchenne, I can’t make any of it go away.
So I use the frustration and the anger and the sadness to fuel the runs I do, to make me feel that I am doing something rather than nothing.
I know that the money I raise is simply a drop in the ocean of the Goliath sized problem, but it is MY drop in the ocean, my David sized rebellion.
So running a marathon to raise money for Duchenne is not in any way altruistic. It has become part of my way of coping, of understanding the way I feel.
It’s not, as I assumed in my first desperation filled google searches, a form of denial.
I am not running away from Duchenne as I pound my way round, as I push my body harder than I think I can.
I am running towards my biggest fears and the sadness underneath them, allowing both my brain and my body to hear them.