When I talk about rare disease issues, I always give a bit of personal context. The issues I raise and the reflections I make are only effective because they’re based in the family’s experience. Me pretending to be a confident lecturer only works because I spent the time being lost and bewildered, battling for, and with, Herself. I start with a picture of my mum, looking happy and well at The Brother’s wedding (the crutches are hidden- the progression was underway but we didn’t know it).
I talk about all the things we learned- the limits of medical expertise, wheelchairs, therapists, the dread of a late night phone call.
But we also learned about the power of someone saying “I know about PSP. I can
help.” A connection. Someone who understood the issues, and who walked with us.
We learned the power of asking questions, and of being asked.
I show a slide of two Edwardian ladies, walking sensibly side by side. They have hats and gloves and look like they are good living. Just like their real life counterparts…
I have made real live actual friends through blogging. The bloggy buddies I’ve met, I feel like I’ve known for ever. Most of you I may never meet, but we connect, we are friends. I was delighted when Debra from breathelighter contacted me last week. She’d come across a film, thought about rare diseases, thought about me. How cool is that?
The film has it all- cute child, rare disease, a wonderful dog, love, friendship. The power of connection. The importance of having someone to walk along side, to share the load. Love. Be prepared to sniffle when you watch it.
Everybody deserves that connection. Let’s do what we can to support each other, to ensure that we all get that chance. Edwardian hats and gloves are optional. Blue drinks may be compulsory.