Laura Goldstein lives in Greater Boston.
In April 2021, my husband, Scott, woke up with fasciculations — spontaneous muscle contractions — rippling all over his body. It was frightening and completely out of nowhere. Scott was only 38 and had always been healthy.
But that morning, something felt so wrong that we went straight to the emergency department.
A physician told him it could possibly be ALS, a terminal neurodegenerative disease. Even writing that now still doesn’t feel real.
We had a 2-year-old at home, and I had just found out I was pregnant with our second child.
We were building our future. We were supposed to be in the middle of the happiest chapter of our lives, not learning how to live inside a terminal diagnosis.
For the next two years, Scott did everything he could to prove that doctor wrong. He saw specialist after specialist. He tried different treatments. We held onto hope that it was something else, anything else. But eventually, we were led back to the same answer: ALS. A disease with no cure.
Before ALS, Scott and I lived for adventure. We met in Baltimore in 2012 and realized we lived just down the street from each other. We connected immediately over our shared love of the outdoors and travel.
Over the years, we traveled throughout the United States and across the world. We imagined sharing that life with our children. Instead, ALS has taken it away piece by piece.
Scott has lost function of his legs and is now completely wheelchair bound. His arm strength is weakening. His breathing is also now affected and it is getting harder for him to speak for longer periods of time. He is getting winded reading books to our children. He can’t drive anymore. He can’t bathe or dress himself independently. He can’t pick up our children or run around with them the way he used to.
And yet he continues to show up for us in every way he still can. He reads books with our kids.
Plays cards. Participates in their imaginative play. Does science projects with them. He goes to their activities whenever possible.
From the beginning of his diagnosis, Scott has been clear about one thing: His quality of life matters most. To him, that means being able to communicate, participate in our children’s lives, and maintain as much independence and dignity as possible.
He has also been unwavering in his decision not to be kept alive by machines. He already has daily pain. Without life-sustaining technology to ease the discomfort associated with muscular degeneration, the end stages of ALS can mean prolonged suffering as the disease strips away his ability to eat, speak, and move independently.
Scott wants the ability to decide when it is time — not because he wants to die, but because he wants to live fully for as long as he can, and then face the end without this unnecessary suffering. He wants to be at home, surrounded by his family, not in panic or pain, and not in a hospital room filled with machines and strangers.
But death with dignity is not yet a legal end-of-life option in Massachusetts. Lawmakers are once again considering the End of Life Options Act.
This bill would allow mentally capable, terminally ill people to request medical aid in dying under strict safeguards and medical oversight, so they can avoid unbearable suffering at the end of life.
For our family, this law would mean Scott could have control over the end, even after ALS has taken control over everything else. And because our kids are still so young, it would give us time to prepare them, and say goodbye in a way rooted in love, not trauma. Scott deserves compassion. Our family deserves compassion. And so do countless other families quietly living through terminal illness in Massachusetts.
Lawmakers should pass the End of Life Options Act — before it’s too late for my husband to have the choice he deserves.