Spinal muscular atrophy (SMA) awareness week is from the 28th September to 4th October 2015. As a young woman with SMA myself, I've written an open letter to SMA that talks about the things - good and bad - that it has brought to my life.
A big congratulations to you. You have infiltrated so many lives that you've now got a whole week dedicated to yourself. A week where we will discuss what you like to do and what you like to take away. And you probably won't like to hear this, but mostly a week where the hope of eradicating you for good is out there for all to see. Because people are fed up with you now. They are fed up with you taking their sons and daughters; brothers and sisters. And those that live with you inside are fed up with you eating away at their strength.
Physical strength that is, because however hard you try, you won't succeed at destroying our emotional strength.
And guess what? This world will destroy you. Maybe not in my lifetime, but someday you will be no more.
I do wonder what that world will look like. Sometimes I wonder what my own world would have looked like if you weren't a part of it. But I don't think about that in a mournful way, but purely out of curiosity.
What would I be doing now if I didn't have you? Would I be a surgeon, a pilot, a professional dancer...? Would I still have thrived academically? Or would I have found my niche in the sporty cliques? I honestly don't know where I'd be. No matter how hard I try, I can't imagine my life without you in it. Because you have changed every single part of me; from my career, to my friends, to my food habits.
I can't say how I would have turned out without you, but I think I can guarantee my life would not have been as interesting.
Yes, you have made things rather difficult, but I am sure you are aware of that. And yes sometimes it would be nice to be able to throw my hands above my head and do the YMCA or pick up that extra large cocktail. But overall, you haven't caused that much devastation. In fact, you've opened doors which I never would have gone through without you.
You forced me into this huge, amazing community filled with like-minded individuals. You have given me a second super-extended family which crosses continents. No matter what you are going through, I now always have someone to help me through it.
Not only that, you gave me a brand new life path. There's no way I would have spent my spare time campaigning for disability rights with Muscular Dystrophy UK's Trailblazers if it weren't for you. I certainly wouldn't have had the chance to hang out in Parliament so frequently! So now, I don't just fight to make my life better, but to make life better for every young disabled person. And I love it. It makes me feel a part of something, something monumental.
So I actually want to thank you. Thank you for making my life so rich and interesting. Thank you for making me the expert problem-solver I turned out to be. Thank you for making me a part of something.
I can't say I will be sorry when you don't exist in this world because you have taken too many lives. But I think the world will definitely miss the diversity you provide.
A Proud SMA-er