I had been doing more writing for the Rare Disease Foundation website. I started to do more speaking about the role of the patient and the rare disease community. Starting a blog where I could express more in long form seemed like a good idea at the time.
Much like when I started being more active on Twitter, I put some thought into whys and the whats of my participation. Who did I want to be in this blog: anonymous? Was it going to be only about my rare disease community experience? About patient advocacy? Parenting while navigating the health care system? Well the answer is yes – yes to all of it. But somehow it felt like I needed to tie it all together, in a bow, if you will.
Surely there was something about what I wanted to say that brings all these things together? That would help me decide what to write about? Otherwise I could stare at an endlessly empty page, forever pregnant with possibility but I would never actually complete anything. In short, I really needed to give myself a goal. Or at least find a theme for what I wanted to accomplish.
It turns out that it wasn’t as difficult as I thought. All the time it was staring me in the face because through all of what I talk about online, in person, and behind a podium runs one theme – I talk about my experience. And right now, my experience is that of a mom trying to make some change happen. Sometimes that change is big. The systems I intersect with – medical, academic, social – are not perfect (frankly, neither am I) and working together, we can make them better. Often, the changes I’m concerned with are small – they’re the changes in my kids, my family that will teach them how to advocate for themselves to make sure they have as much control over their destiny as possible.
I’m a firm believer in teaching by doing. I make plenty of mistakes. I like to model the behaviour, the attitude, and the changes I want to see in the world. I do it for my kids; I do it in my interactions with ‘the system’. It’s the only way I can see to make a difference.
So, I thought I’d write about it here.