Brian Moffett

Brian Moffett shared his story in May of 2024.

In October, I drove from New York to Oregon to attend my son’s wedding. During my time there I started struggling to walk. I ended up needing a cane and help getting into and out of chairs. By the end of the three-week trip, I could no longer make the drive back; I had to fly back home to New York.

Eight weeks ago, at age 66, I was finally officially diagnosed with ALS, though the diagnosis was no surprise by that point. Weakness in my limbs started in the summer of 2023, but everything snowballed from October onward. There’s been no time to adapt to the changes; every loss has come almost overnight. My voice is strained and hoarse. I can’t walk anymore, even with a walker. I can’t move my left arm, my left hand is curled up, and my right arm is constantly in pain and barely functional; at this point it’s difficult to pick up and put down a cup.

Every part of my day is suffering. I’m now having trouble breathing. I’m constantly in excruciating pain. With ALS, you don’t get better; you only get worse. Everything is getting harder by the day, and there is absolutely no reprieve from my situation.

I’m a person who enjoys keeping busy. Prior to my diagnosis, I was traveling, restoring antique mopeds, riding motorcycles and attending live music, and for 15 years I helped run the Westerleigh Folk Festival on Staten Island. They called me the “grill master” for all the work I did to ensure the food was great. The festival is happening again this September, and I can’t be part of it; it’s devastating. Before this, I did my own work around my home — my own plumbing, I put in windows, my own deck, my own roof. I love doing these things, and now I can’t do any of it. I have a giant tool shed with every tool imaginable. I had an El Camino that I used to work on. It was one of my many loves. And now all of those loves are being taken away, and it seems like it won’t be long before my right arm completely ceases to work.

Grill Master Brian with son, Jake

ALS has already robbed me of my quality of life. I miss going places and doing things, but these losses don’t even compare to knowing the kind of death that lies ahead without the option of medical aid in dying in New York. I’m suffering. I might not have a voice. It won’t be long. I am doing all I can with speech therapy, but every day it is rapidly getting harder. ALS came on very quickly for me. There’s nothing I can do about it, but I hope that New York gives me the right to a peaceful end of life.

I’m sitting here, physically and mentally suffering, scared of what’s next. It’s time that New York lawmakers do the right thing for people like me. This decision should not be theirs to make. I’m the person who is sick. I’m the one that continues to suffer more and more every day. They have no reason to deny me a peaceful end to my suffering, an option that exists just next door in New Jersey. Why would they want to keep me in pain? It’s unbelievable.

My loved ones and I have talked about me going to Oregon or Vermont, where residency is no longer a requirement to access their medical aid-in-dying laws, but it would cost a fortune that I don’t have. In addition to it being absurdly expensive, just withstanding a 30-minute cab ride in my wheelchair was so painful that it ruined me for two days. A long ambulance ride or flight to get to another state would be incredibly damaging. And I don’t want to go to another state. I want to die in New York, where I was born and where I dedicated my entire life and career. It’s cruel and shameful that any dying person would have to leave their home to decide when enough is enough from a disease that is 100% fatal.

I would love to go August 1 — the same day I was born in 1957. Here that day, gone that day. With my son and his husband, Jake’s friends who love me and whom I love (and who come to see me on a regular basis and help me), my ex-wife and Jake’s mom and her sister and her husband and daughter because they always loved me no matter what, and my dearest friends. Ideally my friends would play some live music. Just a few weeks ago, they were in my hospital room playing music and singing, and it meant so much to me. I would also want Jake to sing; when he was a little boy, we used to go to singing contests, and the crowd used to go crazy. That’s how I would love to move on and out of this suffering. I want all my loved ones to be happy for me and throw a party, knowing that I won’t be suffering any longer.

Read More:

The Staten Island Advance – Longtime Staten Islander wants to be first person to use medical aid in dying in New York: ‘I’m suffering more than you can imagine’