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.
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