It’s hard to choose just one thing that I want you to know about ALS. ALS has been a part of my life since before I was born. My grandmother was diagnosed with ALS in 1996, and I wasn’t born until 1999. Even my earliest memories of my grandmother are tainted by ALS. Many of them are still happy memories, but ALS is a part of all of them. It was the elephant in the room as we struggled to understand my grandmother’s voice or tripped over her walker. We tried to pretend it wasn’t there, but ALS makes itself hard to forget.
Five years after my grandmother’s death, it is still hard to forget. When I hear the slurred words of someone with ALS, I hear my grandmother’s voice. When I see someone whose fingers are curled over I see my grandmother’s hands. I see my grandmother in every person living with ALS I meet. And every time I remember her, I am forced to remember that she’s gone.
The last couple of months of my grandmother’s life were brutal. She could no longer utter a single word, and she spent her days alone in a nursing home - too sad to have friends visit, and too far away for family to visit often. My mother and I would visit when we could, but these visits were always emotionally exhausting. I was the only grandchild who was allowed to visit my grandmother in her final few months, I was the eldest, and the only one who could handle what was happening. I would sit there with her and talk to her about anything I could think of. In response, she would cry, heartbroken that she couldn’t communicate with those she loved the most. I remember the way I would sit there smiling, only to sob once we reached the car. It was devastating and confusing, especially for a 13-year-old who just wanted to visit her grandmother.
I think a lot about what it means to remember her. I know she would’ve wanted me to remember when she was young and healthy, but that wasn’t the person I knew, and that is not how I remember her. I often wish I could forget the sterile smell of the nursing home and the sadness that lived within it, but I know that forgetting isn’t productive. It is remembering that has pushed me to continue to fight to find a cure for ALS, even when my grandmother is gone. It is remembering that has led me to participate in the Tri-State Trek for the past seven years, and it is remembering that has led me to intern at ALS TDI for the past two summers.
Remembering is what fuels me to do everything in my power to end ALS.
-Betsy