Donald Kushner reflects on living with relapsing-remitting multiple sclerosis as both a former primary care physician and as a patient. He shares how MS reshaped his understanding of strength, shifting roles, and the importance of honesty and presence in family relationships.
Transcript
Thank you for being here. I’m really glad you came. Before we begin, I want to introduce you to my family. This is my daughter, Madeline. This is my son, Sydney. This is me. And this is my husband, Don. I painted all of these portraits.
We were all diagnosed with relapsing-remitting multiple sclerosis about 20 years ago. But only one of us has an abnormal MRI. When you look at these portraits, it’s not obvious who that is. Each of us has our own life, our own way of moving through the world.
If you look closely, you may notice something else. The frames aren’t quite the same, and one frame is very different. Not the portrait. The important parts are intact, but the frame is cracked. Once you see those cracks, you can’t really unsee them. That’s where listening begins.
My name is Don Kushner. I live in Pittsburgh, Pennsylvania. I was a practicing primary care physician for a little over 20 years, and I was diagnosed with relapsing-remitting MS about 20 years ago.
When I was on the other side of the exam table, the side where I was wearing my white lab coat, I took care of a number of people, several people who have MS. And oftentimes I would take care of not just those patients, I’d take care of their family members — their brothers, their sisters, their children, sometimes their parents, their friends.
And that gave me an opportunity to see beyond the chronic illness. I was able to see how these families interacted with all those people at the same time.
And that experience that I had really changed a lot of my thought processes, not just about medicine, but also about families, and their communication, and the empathy they have for each other. And so I look at it now that living with MS isn’t just about what happened in the brain and the spinal cord, but it’s what happens between the people.
When I was first diagnosed, I looked at the wall behind me to see the degrees that were hanging there. I thought, well, this shouldn’t be so hard. I talk about things like this all day long with my patients. And then I realized that as a doctor, I was good at giving information, but I wasn’t really good at helping people share vulnerability.
I could describe lesions, perhaps, in their brain. I could talk about treatment plans. But I couldn’t really talk about fear and uncertainty and how people dealt with that. And it took me quite a while, especially with Robyn’s patience, to learn that conversations — especially about MS — don’t have to have answers. They just need to have honesty.
And you hear that a lot. When I talk about honesty, it’s not just honesty coming from me as a patient. But it’s a matter of honesty coming from my wife and the people around me, as to their thoughts. And it’s about me listening and settling myself enough that I can listen to what their honesty is.
I also think that a lot of people with MS come to a certain moment where they realize that the person sitting next to them doesn’t have to fix us. They just need to stay beside us. And it’s that kind of presence that shapes every relationship that I have.
Over time, the relationships I have, some parts change, some parts have stayed the same. It might sound corny, but the part that stayed the same is really love. That’s what started the relationship, and that’s what’s still there. But what’s changed is the balance.
Initially, I thought I would always be the caregiver and that I would always be the strong one. But what I realized is that multiple sclerosis changes roles, whether you invite it or not.
I kind of look at it that Robyn and I are both in our separate canoes. We’re paddling in the same direction. Sometimes she’s going to be a little ahead. Sometimes I’m going to be a little ahead, and we’ll both wait for the other one to catch up. So the rhythm changes, but the directions are still shared.
That strength isn’t always about fixing yourself. It’s not about preventing yourself from falling. Strength sometimes is about trusting the person that’s next to you to be able to help you get back up after you fall. The relationships aren’t about performance. It’s not about what I can do. But it’s about presence. So it’s about showing up, even when that version of you is tired or uncertain.
And that change in perspective has really changed how I view the relationships. Cracks in the frame don’t actually change what’s in the picture, but they can make it worth looking at. And that, I believe, is what’s true for relationships.
What you’ve heard are my reflections shaped by a life of family and an illness that doesn’t belong to just one person.
MS doesn’t live in explanations. It lives in relationships. While it becomes visible once something has been named, the pictures are the same. The people are the same. What changes is how we see, and whether we are willing to stay close once we do.
