Separating the Who from the What
A Caregiver Reflection
Many years before my wife Debra was diagnosed with ALS, or showed any symptoms, we attended a wedding reception. Among the guests was a woman in a power chair. I remember thinking she seemed like a shell of her former self. She could only grunt, tried to contain her drool, and communicated by writing on a small whiteboard. This was before today’s technology existed.
And yet, she was attentive. She smiled. Her eyes drew you in.
I didn’t know how to engage, so I cowardly created distance.
Debra did the opposite. Except for when the woman’s husband spun her around the dance floor, Debra spent the entire evening with her—talking, laughing, reading what she wrote on her slate. Weeks later, we learned that the woman had passed. In her passing, she had conquered her ALS.
Now, more than five years into our own journey, we have found solace in ALS support meetings—learning how to manage, cope, and create a meaningful life while living with what we sometimes call “Always Losing Something.” We’ve seen people come and go. We’ve seen others live 16 years or more.
Through it all, I’ve noticed something.
Each of us wrestles with separating who we are from what we did.
What we did, our jobs, roles, and careers, are often taken from us.
Who we are, our identity, values, and character, remain untouched.
For some, separating the two is difficult. A musician who built a career around a passion. A teacher who lived to make a difference. A professional who found purpose in their work. When career and calling blend together, the lines blur.
For many of us, our work was a means, not an end. Yet we measured our worth by income, productivity, and praise. When that is stripped away, we can feel despondent, even worthless.
The loss of what we did sometimes spills over into how we imagine others see us, sitting in a wheelchair at a restaurant, unable to speak or move our hands.
But think back to when you were healthy. How did you see someone living with disability? Likely with compassion. With a desire to help. With empathy. Most people imagine themselves in your place.
We do not need to be embarrassed by who we are—because the “who” has not changed.
Our core self is the foundation of our identity. It is not job-driven; it is self-driven.
Our values endure.
Our integrity endures.
Our humor, kindness, compassion, spontaneity—these endure.
Children still see a parent.
Neighbors still see a friend.
Loved ones still see the person they’ve always known.
Yes, we may no longer travel freely or pursue activities the way we once did. But the intrinsic motivations that shaped our goals before ALS are still within us.
Like the woman at that wedding reception, smiling, engaged, present, our purpose does not disappear.
ALS may change what we can do.
It does not change who we are.