Heather Kirn Lanier’s article on raising a daughter with Wolf-Hirschhorn Syndrome might seem removed from my life experience, but it home for me, as I’m sure it will for many of you.
Too often, I feel like I am to blame for being sick, for having Rheumatoid Arthritis. Like somewhere along the line, I did something wrong. Had the wrong diet, was too stressed out, was too hard on my joints.
And on the days I am strong enough to not believe that I caused my disease, I have to live with the fact that other people do believe it. They think that I wasn’t [insert fun adjective here – fit, healthy, happy, mindful] enough. That if I’d [insert condescending verb here – taken vitamins, run more, meditated], I wouldn’t have RA.
Well you know what? Fuck that.
The article isn’t about RA. It’s largely focused on motherhood, something I’ve yet to experience. But it doesn’t matter. It resonates just the same.
I’d believed I could control the body because I could not stomach the truth: that the body is fragile, ephemeral.
Here’s the thing. If you buy into a false narrative that the body is controllable, that illness can always be prevented, then by proxy you are left with a disturbing, damaging, erroneous conclusion: the belief that a person’s disability is their fault.
Perhaps the point of life was not to achieve some kind of perfection. Perhaps illness was an integral part of life’s dance. Perhaps fragility was built into our very design. Perhaps fragility was also strength.
So the affirmation-uttering woman might more honestly say into your ear: It will not be easy, and it will not be comfortable, but it will be, and you will become.