Blog

Updated September 26. 2024

I’ve been thinking a lot about getting naked lately. Not the regular kind of unclothed – sorry to anyone who’d started drooling and to those of you who covered your eyes, you can read on without trepidation. I’m talking about the kind of naked that shows the real you – or most of the real you (with thanks to Heather Armstrong of dooce for the inspiration).

I’ve spent a large portion of my life hiding the darker, messier side of having arthritis and a disability from the rest of the world. Being open leads to people getting uncomfortable, which too often goes into pity and in case you didn’t know, pity is just about the worst thing to have thrust upon you. The “oh, thank god it isn’t me” shows through, right after the condescension. On the other hand, keeping that part hidden can lead straight to the point where you are seen as all brave and inspirational. Super Cripple territory. Once you’re in that place, it also gets hard to show parts of yourself that aren’t about the disability and all of a sudden, you’ve got barriers on top of fences on top of shields. It weighs you down.

I think we all hide ourselves and hide too much. I think people who are members of a minority group especially hide what makes them different and in the quest to be seen for who you are, rather than what you are, you can lose sight of yourself.

The personal is still political and I started thinking about why the consequences of being me – all of me – and being open about what that entails felt so dire? I thought of how I often spend the first few minutes upon meeting someone new doing a quick and subtle educational dance about where the focus should be (me, not the disability), what would be OK (no pity, thanks, I’m fine) and what to expect (don’t worry, I won’t pee on you). Nothing that explicit, you understand – a few words of ordinary greeting with the right inflection, a few jokes and as the eyes shift from the wheelchair to your face, you can see the tension leave their bodies.

Why was I twisting myself into a pretzel to keep the messy stuff from view? How much of this was about making others feel at ease around me, so no one (myself included) would suffer the indignity of able-bodied people feeling all icky? What did it do to me and my sense of inner peace to pretend I was more “normal” than I am?

The past year has taught me a valuable lesson: pretending, even to protect your dignity, takes energy. A lot of it. I started wondering what my life would look like if I reclaimed the energy and time it takes for me to keep the crap and the details hidden. What might I get done if I used that energy for something else? Who might I find if I stopped trying to keep up appearances and looked underneath all the protection? Would people like her? Would I like her? Would I, after decades of the automatic song-and-dance, even know how?

And why was I thinking of doing it in public, on a blog, for heaven’s sake? (probably as an official challenge to myself so I don’t chicken out)

How deep will things be? How many layers of the onion am I going to peel off? Exactly what am I talking about? Time will tell – it’s a work in progress.

Change is good.