One of the activities in the Spoonie Collective retreat was to write a letter from your illness to you. Another was to write from you to your illness. For people who love The Mighty, I found this letter written to hEDS, which rings very true. Below is a Spoonie Collective participant's letter, which I found particularly moving:
Dear Mystery,
You should know that I've been getting better at preparing for your arrival. These days, it’s almost like making up the bed for a house guest who I know will overstay their welcome. I can feel you coming now. It’s like that feeling before a storm, when the wind flips the leaves of trees upside down to warn us it’s coming through. Other people are also getting better at sensing your presence, and I’m almost jealous when they can see you coming before I can. Still, they don’t know you quite like I do - and I hope they never will.
There are some people who know more than others now. I recently told a close friend about everything that happened with you - from beginning to end. It felt like I was narrating the plot of a movie or a book. I couldn’t believe I was telling her our story, and that it wasn’t someone else's story from some other world.
There’s something else. I myself thinking of you the most in the moments when I should be thinking of you the least. Why is that?
Yours,
Allie