Honoring Mykl Morrissey

Our Story

Our World Became Smaller

Eventually, most of our life happened inside our home. Mykl’s wishes about how he wanted to live through ALS were always front and center, with his safety close behind. When Mykl needed a hospital bed, we put it in the middle of our living room. As he became increasingly immobile, I wanted our lives to flow around him rather than have him tucked away while life happened somewhere else, unless that was what he wanted. It was his home and his life. Where he spent his time needed to work for him, not simply for the people caring for him.

From his bed or chair, he could see the hummingbirds bathing in the fountain outside the window. He could hear me playing piano. He could smell dinner cooking. He could watch cycling and nature documentaries. Our dog, Rush, was almost always beside him. There was medical equipment everywhere, carefully organized so we could reach what we needed quickly. And there was still a life happening around it.

We made soup. We played Scrabble and Qwirkle. We laughed. We cried. And we made room for the emotions that came with all of it. Mykl was naturally more guarded or reserved than I was, and sometimes he needed encouragement to let out what he was feeling. When he told me he felt like screaming, I told him to scream. Our home could hold it. So he did, and afterward, he often felt some relief.

Once, after watching him scream, I realized I was jealous. “How come you get to do that and I don’t?” I asked. “Bring it,” he said. I told him I didn’t want to scream; I wanted to slam doors. “Go upstairs and slam every door you can find.” So I did. When I came back downstairs, he asked how I felt. “Fantastic,” I told him. And we laughed.

ALS was devastating. And there was tremendous beauty inside our experience. Both things are true.

What ALS Taught Us

Before ALS, I spent nearly thirty years building a career. I trained as a biochemist, worked in laboratories, and eventually built a career around complex technologies and early-stage companies. I was ambitious. I cared deeply about my work.

Then our world became very small, and I discovered that many of the things I had spent my life pursuing didn’t matter nearly as much as I thought they did. Other things became enormously important: homemade soup, music, a favorite blanket, the hummingbirds. A friend texting or calling to say, “I don’t even know what to say. I just want you to know I’m here,” mattered. They didn’t need to fix anything. Their presence was enough.

Mykl and I had a phrase for what we kept discovering: “Joy in the mundane.” It was real. It existed. In fact, it abounded.

I learned that a life can become very small without becoming empty. I also learned that vulnerability requires tremendous strength. ALS eventually made Mykl dependent on others for nearly every aspect of his physical care. I witnessed an extraordinary level of vulnerability, and what I saw inside that vulnerability was immense courage. Physical dependence never made Mykl less worthy of dignity or less capable of making decisions about his own life.

There Can Be Beauty Inside Something Terrible

ALS took Mykl’s physical independence and ultimately his life. I won’t diminish what this disease took from him, from me, from his daughter, or from the people who loved him. But loss is not the whole story. There was beauty there, too.

Preparing for death did not make our life together less alive. I learned that preparing for death can sometimes allow us to live with remarkable clarity.

I miss Mykl every day. When people tell me they are sorry for what we went through, I often find myself telling them something they don’t expect: I’m not sorry.

I would never have chosen ALS. I would never have chosen to lose my husband. And walking beside Mykl through the final chapter of his life was the most harrowing, meaningful, and beautiful experience of mine. Those truths exist together.

This is my experience. It does not need to be anyone else’s. There is no correct way to experience ALS, caregiving, death, or grief. No one is required to find meaning in suffering or beauty inside something that hurts. We found beauty inside ours. And I am deeply grateful for it.