I think about Prader-Willi Syndrome every second of every minute of every single day. It never goes away. It’s like when you get an annoying ringing in your ears, except it lasts the rest of your life. Maybe that’s why I dive head over heels into books, then running, then cleaning, then writing, then shopping, then activism, then eating, then…whatever else I have a tendency to throw myself into full force for a short period of time before fizzling out and wondering what to do next. Maybe I’m just trying to drown out the noise; the “what ifs?” and “what thens?“, all the attempts to calm my own fears and convince myself that everything will be okay. So far, running is the only thing that has come close. But, in the end, it’s all futile. Nothing makes it go away, nothing makes it feel better, nothing makes it okay.
I cleaned out some clothes this weekend; work clothes I haven’t worn or fit into in five years, all the matching shoes that went with them. I even took inventory of my underwear drawer, I didn’t realize I had only maternity underwear left — which either speaks really highly of the quality of maternity underwear, or not so highly of the size of my butt. I don’t know what provoked all of this except that they were all tangible reminders of a time before Prader Willi, a time when expectation was so much more …hopeful. (I know…the irony)
Mostly though, it just made me really sad, and really tired. I’m worn out (again). I need a vacation — but not a vacation with bags and tickets and reservations. I just want one day where I don’t think about Prader Willi, one day where I don’t even know what those two words mean.