Yesterday, I posted a photo of me with my rollator.
Even the sentence is difficult for me to write, as it contains words that I’ve struggled to take ownership of. First: rollator. I am a physician but had never heard the term before last year, and would have called the frame with wheels that my patients used a walker. My spellcheck doesn't recognize the word; I wish I didn’t need to learn it either.
Second: my. My as in that rollator, reluctantly purchased this past autumn as my mobility declined, belongs to me. No matter that it’s sleek, lightweight, state-of-the-art, Danish-designed, made especially for a petite build, in a stylish colour called oyster; it’s not an object I’ve ever wanted to claim as my own. Having a disability is not something I’ve ever wanted to claim, either.
Making peace with MS is like staking your flag in quicksand. Every change in your body is imbued with worry. Each relapse you are taken anew by surprise, then by anger at yourself for being taken by surprise by a disease that makes no promises. You try your best both to hold onto hope and allow yourself to grieve, to move toward acceptance with time and, if you’re lucky, with recovery. Maybe like me, you try to pack your disease into a box and put it away on a high shelf, a little-used piece of your identity that you’ve shrugged off and don’t plan to wear again anytime soon. But then there is progression, or another relapse, and everything keeps sliding out from underneath you. It is an ambiguous loss.
In the past year, I’ve transitioned from being a person with a largely invisible chronic illness to a person with a visible disability; it still feels uncomfortable to present this way. But on social media, I can control how the world sees me, and whether intentional or not, up until now a mobility aid has been missing from the picture.
So, hello world. Here I am. (Cue This is Me from The Greatest Showman.)