Living with MS puts me in the center of everything — literally and figuratively
Written by |
From left, Robin, Donald, and Sidney Kushner take in Pirates spring training games in Bradenton, Florida.(Courtesy of Donald Kushner)
In recognition of Multiple Sclerosis Awareness Month in March, the MS Awareness Month campaign features a series of stories highlighting the real-life experiences of people affected by MS, written in their own words. Follow us on Facebook, Instagram, X, and Pinterest for more stories like this, using the hashtag #MSAwarenessMonth, or read the full series.
I’ve been sorting through old family photos — boxes I thought I’d organized years ago, only to realize I’d mostly stacked them in a way that looked organized from a distance.
In pictures from 20 years ago, I do what most people do but rarely admit: I look for myself first. Sometimes I’m in the background. Sometimes off to the side. Sometimes I’m not there at all — maybe behind the camera, maybe drifting off to join a much better-looking group.
The Kushner family gathers around Donald, seated in front, at a Christmas celebration. Standing from left to right are his son Sidney, his wife Robin, his daughter Madeline, and her fiancé Mark Livolsi. (Courtesy of Donald Kushner)
Then, somewhere along the way, the frames begin to shift.
Ten years later, something subtle has changed. I’m no longer off to the side. I’m always in the center.
Birthday parties, school events, holidays: There I am, placed right in the middle. Not figuratively. Literally. A steadying hand on my shoulder. A walker angled politely out of view. A chair pulled close so my wheelchair doesn’t look stranded at the edge of the shot. At first glance, it all blends in, but once you know what to look for, you can’t unsee it.
My family wasn’t staging anything. They were doing what families do: closing ranks around the person they love.
But as I flipped through the years, another thought tugged at me: Did I want to be in the center? And, more honestly, did they want me to be?
Life with multiple sclerosis, or MS, rearranges more than mobility. It rearranges the choreography of a family. The person with the condition becomes a gravitational center — not out of ego, or even choice, but out of necessity. There’s tenderness in that. And a quiet ache.
Some days, being in the center feels like being seen. Other days, it feels like being seen only for what’s changed.
Looking back now, I see how much my family has carried — things I didn’t always notice in real time. And how often I believed that if I didn’t mention the walker, cane, or wheelchair, maybe the weight of it would stay small for them.
It didn’t.
MS didn’t just shift me to the middle of the frame. It shifted all of us — our roles, our focus, the quiet work happening just outside the edges.
And maybe that’s the real story: Not how MS changed where I stand, but how it changed how we stand together.
