Throughout all his 53 years, Mike Mizzone is used to being the strong, active guy that takes care of things and helps others. So much so that when the house next door to his Riverside Drive home caught fire, Mizzone was the first at the scene, rushing into the burning house to try to save his neighbor – a feat for which he was later presented with the Carnegie Hero award for bravery. At 6’2” and over 200 pounds he still looks like the lifelong athlete he is, a man who has played and coached sports his whole life and more recently even trained in mixed martial arts and competed in triathlons.
So when he noticed a small tremor on his left hand nearly two years ago Mizzone knew immediately something wasn’t right. For nearly a year he visited doctor after doctor who ruled out one disease after another until the day he got the prognosis he’d been dreading, ALS. The diagnosis came just weeks after he and his wife Jennifer married. “It’s hard to accept,” Mizzone said. “The thing is, I’m a fighter, I’ve never lost a fight in my life. But this is one fight I can’t win. Hopefully I can prolong it as long as possible. Or who knows, maybe I’ll be the first one to beat it.”
As he learns to live with the disease Mizzone is beginning to believe he was dealt this card for a reason, and his fighting spirit may have something to do it. Earlier this month Mizzone testified in front of the state’s Judiciary Committee in support of the proposed “Aid in Dying” legislation in hopes the bill would advance to the General Assembly. “Aid in Dying” is the medical practice of a physician prescribing medication to a qualified patient who is terminally ill, to self-administer to bring about his or her death.
In his very personal and heartfelt testimony, Mizzone urged the assembled lawmakers to remove any personal, moral, or religious feelings and base their findings from the professionals and people like himself who testify before them. “ALS is a progressive and degenerative disease that always ends in death with a mortality rate of three to four years. It robs you of your ability to walk, to eat and breathe which results in death. I can only imagine how traumatic it would be for my children to watch their father deteriorate in this fashion. I am in favor of this bill to give people like myself a choice to decide when they are terminal and lose their independence and mobility – a chance to die with honor and dignity and not feel as if they are a burden on their friends, families and society. Allow them to end their suffering in a compassionate way with their loved ones by their side.”
To pass such legislation, Mizzone believes, would relieve an enormous burden from the shoulders of the terminally ill. “This would be the most caring and compassionate thing you could give any patient – to let them choose to end their life with dignity and peace. It would give the dying peace of mind,” Mizzone said. “They are already anxious and depressed. Just knowing you had the choice in the last year of your life would bring more peace and be more beneficial than any drug, therapy or palliative care.” Citing statistics from U.S. states that have Aid in Dying legislation in place, Mizzone points out that many terminally ill patients don’t choose to end their lives. “I don’t know if I would choose to use it but I want to have the option,” he said.
Unfortunately, the committee later voted against the bill, a disheartening outcome for Mizzone, who vows to testify again next year when the bill is resubmitted to the committee. “It is a gross injustice to the lawmakers’ constituents to not bring the bill to the General Assembly where others can vote on it,” he said. “I sat through nine and half hours of testimony from doctors, lawyers, legislators and former legislators and only myself and a woman with emphysema were the only ones actually afflicted with a disease who spoke. I wanted them to reflect on how they would feel if it was their own loved one who was suffering.”
Meanwhile Mizzone is an active participant in the ALS Association’s Connecticut Chapter where he recently suggested the organization add a “patients only” support group separate from the one patients and caregivers attend together – a proposal the other patients welcomed. “It’s an opportunity to talk more intimately about the details of this disease – to ask questions and share personal feelings – things we are not going to talk about when our caregivers are present,” he said. When he learned about the hardship of a caregiver trying to lift her husband, he began working on devising a strap that will make it easier to lift someone who has fallen.
He is finding invitations to speak about ALS at functions sponsored by groups like the ACLU, American Cancer Society and the Compassionate Care/Compassionate Choices lobbyists are becoming more frequent and he is happy to oblige. “If I can spread awareness then that’s what I am going to do. As long as I can so maybe someone else doesn’t have to lose a husband or father so early,” he said. “I hope I can make a difference.” He is also involved in providing his own stem cells for a clinical research trial in Massachusetts targeting motor neurons.
Mizzone plans to live life as fully as possible as long as he can. He is trying to maintain his strength with a regular routine of lifting light weights and cardio training, although he’s already lost about 30 pounds of muscle. Retiring early from his job as the business representative for the Carpenters and Millwright’s Union has given him time to spend with his wife Jennifer and his five children who range in age from seven to 28. He’s even crossed a few things off his bucket list, like the trip he took to Bora Bora with his wife and brother. “I’m taking in the little things, like holding and wrestling with my children and taking them fishing in the Wepawaug River,” he said. “I have an illness that will rob me of my ability to talk and walk and touch my children. I’m appreciating those everyday moments that you take for granted and making positive memories.”
By Laura Fantarella – Orange Town News Correspondent