Ambiguous Loss: May 17, 2022
- Erin Norris
- May 17, 2022
- 2 min read
Updated: May 19, 2022
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.)
Thank you for this. Your writing is so honest and real that it helps me to organize my own thoughts and feelings. My relationship with my cane is very similar. I need it and some days I resent that I need it. I live in the small town that I teach in and grew up in. I’ve taught at the same school for most of my 20+ year career. I now have a few grand-students (children of my former students). It is rare to go anywhere in the town and not know several people. Walking into the arena, grocery store, etc. the first time with my cane was so difficult. It took me a while to accept that I even…
On a positive note, it's a good neutral colour, lightweight and you always have somewhere to sit. It is so difficult to accept these aids and more so as a Dr - it was something you prescribed for patients. It wasn't something that we were trained to deal with personally and it was more comfortable being detached. I can't even deal with the words 'white matter lesions' anymore and I'm tired of my 'complicated medical history' but it's up to us to change perception.
My rollator (Rosie the Rollator) allowed me to participate in the world for years. While I'm happy that it's currently gathering dust in my garage, I am happy knowing it's there when/if I need it down the road.
Mobility aids are nothing to be ashamed of - especially shiny, stylish ones!
I don't have MS but do have neuropathy and had a stem cell transplant 2 years ago. Your posts really resonate. Thank you for sharing.
Im hoping we can have a goodbye ceremony for that thing sooner rather than later. Ba bye 👋 !!!
Mobility issues and the need for an aid sucks. No positivity shaming here 😉.