Yes. Prolonging the inevitable is no way to live.
My friend had made his intentions clear: At some point, he was not going to allow amyotrophic lateral sclerosis — the progressive neurodegenerative disease better known as ALS or Lou Gehrig’s disease — to further erode his quality of life. Instead he would end his life. Since his diagnosis in 2021, the steadily progressing disease has stolen mobility from a man who had been physically fit and active for most of his seven decades. With his pain becoming constant and his lungs beginning to fail, he didn’t want to endure the even greater physical and mental anguish that ALS, which has no cure, inevitably brings. As paralysis sets in, people with ALS lose their ability to walk, care for themselves, speak, swallow food and drink, and even breathe. There is no cure and the average lifespan from onset of symptoms is three years.
We’ve known each other for decades. In recent months, we’ve spoken often, including about his ALS, though mostly we’ve spent time on happier pursuits, such as watching the New England Patriots win — though more often lose — and Monday nights at his favorite Somerville pub with his posse of close friends. Budweiser in hand and leg braces stacked against the wall, my friend holds court from the high-top table, his exuberant laugh and hearty demeanor masking his steep decline — and thoughts about ending his life. “People say I look and sound great but it’s all an act,” he said. “I don’t want to be the person who brings down the conversation. I want to be remembered as a good friend, not as a whiner.”
He had a plan to end his life but dropped it, partly because of concerns that it wouldn’t work but mainly due to family objections. He now lives in a cruel limbo, fully aware of a future not living with but dying from ALS yet unable to take action to prevent more suffering because medical aid in dying is illegal in Massachusetts. Unlike in neighboring Vermont, people in Massachusetts suffering from terminal illnesses can’t compassionately and painlessly end their lives if and when they feel they must. Twelve years after Bay State voters narrowly rejected a “death with dignity” ballot proposal, a “medical aid-in-dying” bill is again before the Legislature, where similar efforts have failed for more than a decade. Since then, my friend has been losing his life by bits and pieces to a disease for which there is no cure and for him, no hope. Writing about his downward spiraling life, he felt, could help advance support for medical aid-indying legislation.
His symptoms began in 2019, when he could no longer lift his foot to shift gears on his motorcycle. Further physical decline soon followed. “I could feel myself going downhill but hoped that my doctors could identify a cause that they could rectify,” he recalled. After more than a year of tests to eliminate other possible causes, his doctors at Massachusetts General Hospital told him he has ALS. “When I got home, I googled ‘neuromuscular disease’ and the first thing that came up was a picture of Stephen Hawking.”
By 2021, the life he had long known began to end. He had been an athlete in both high school and college and, after a stint in the Army, he ran a successful landscape business for 40 years, plowing roads deep into winter nights and rebuilding city parks. For a while, he sought to coexist with ALS’s no treatment/no cure trajectory. “I had a good support mechanism and good friends. As long as I could maintain a somewhat decent quality of life, I’d fight this as long as I can.”
But in the past year or so, he said, “I just couldn’t do things I still wanted to do. I couldn’t ride my motorcycle. I couldn’t get to the beach, let alone get into the ocean.” Often using humor or a flippant tone to mask his sobering message, he began to tell family and friends that he didn’t know how much longer he could — or wanted to — go on.
He looked into options in Maine and Vermont, which have medical-aid-in-dying laws, but residency and other requirements closed that possibility. He rejected other end-of-life methods. “I’m not going to jump off a bridge so that someone has to find my body,” he said. “And I’m very anti-gun, I don’t want to leave a mess for someone to clean up.”
Even if enacted, the Massachusetts proposal might not provide him with the self-determination he wants. Like similar laws in other states, getting life-ending medication, which he would have to self-administer, would require, among other things, that two doctors certify that he had less than six months to live. But ALS can take years to reach its terminal stage. “Although the mean survival time with ALS is two to five years, some people live five years, 10 years, or even longer,” according to the ALS Association.
At the urging of some people close to him, he is considering hospice care, though that service also has a six-months-to-terminal requirement. He still worries about prolonging the inevitable. “I don’t want to be lying in a bed just waiting to die,” he explained. “I want control over the last portion of my life.”
He cherishes the support of friends who are saddened by
He now lives in a cruel limbo, fully aware of a future not living with but dying from ALS yet unable to take action to prevent more suffering because medical aid in dying is illegal in Massachusetts.
but are compassionate about his situation. “We all know what will be happening at some point,” one texted him. “And I wanted you to know how much you are loved while you are still around to hear it. And how much you are respected for the difficult choices that you need to make.”
A 2023 poll found that 73 percent of Massachusetts voters support medical-aid-in-dying legislation, backing that grew even more when people learned about proposed safeguards, such as confirmed mental capacity and a requirement that all end-of-life care options, including hospice and pain or symptom management, are detailed. Momentum for such laws is growing nationwide — 10 states have them in place and 19 more, including Massachusetts, are considering them. “I hope that getting people to better understand what people like me are going through helps keep the conversation moving,” my friend said about permitting people with terminal diagnoses to painlessly end intolerable lives.
He knows that others, including the Catholic Church, strongly oppose such measures (though the recent poll found 68 percent support among Catholics). But opponents are not living in my friend’s leg braces. “In life, we often don’t have the choice on how to die,” he said. “If I could talk to the Pope, I’d say, ‘I don’t tell you how to live; don’t tell me how to die.’ ”