John Falzone remembers his first Walk for Multiple Sclerosis. He remembers pulling along his then 4-year-old son Michael in a small red wagon. During the walk, Michael leaned forward and asked, “Why are we walking?”
At that age, Michael was mostly naïve about his father’s condition, but he somehow understood enough to get out of the wagon and say, “I’m walking because Daddy’s walking, and I want to help Daddy.”
John, 57, started working as a carpenter for Fairfield 31 years ago. Three years later, he was diagnosed at age 29 with multiple sclerosis, an incurable autoimmune disease that affects the body’s central nervous system. Throughout his career at Fairfield, there have been very few times when John had to pick up the phone and call in to say he could not come to work because of his disease.
On the cold, windy morning of Saturday, April 5, the National Multiple Sclerosis Society hosted Fairfield county’s annual Walk for MS at Sherwood Island State Park in Westport, Conn. John attended for support, but was unable to walk. However, this was fortunately not because of MS, but rather because of a sore back.
“Watching that walk for the second time in my life, and not walking in the walk on that beautiful day in that wind and that breeze … I would have walked five or six miles,” he said.
According to Michael Branda, development manager of the National Multiple Sclerosis Society’s Connecticut chapter, this year’s MS Walk in Westport had more than 600 pre-registered walkers and raised an estimated $120,000.
John was one of the first people to bring the MS Walk to Fairfield County. In the 28 years since his diagnosis, he has advocated for MS awareness and enjoys speaking publicly about living with his condition.
His first encounter with MS was when his uncle was diagnosed in the early ‘50s and confined to a wheelchair. At this time, very little was known about the disease.
“The second time I heard about it was when I was having trouble with my eyes,” he recalls. “I was having trouble with my walking, I was having trouble with fatigue and I was having trouble with the heat of the summer. For seven months, I was going back and forth to doctors, the year my wife was pregnant with our only son, Michael.” John knew something was wrong.
“I was exhausted. I would wake up from eight hours of sleep and be exhausted. I would push myself to go to work, and finally, after seven months, my son being 6 months old, I find out while holding him that I was diagnosed with multiple sclerosis.”
John continues: “I felt very alone, I felt very afraid, but my first question was about my son.” To his relief, he was told that although Michael has a larger chance of being diagnosed with MS than the average person, his chances are not significantly larger.
John remembers the first week he was diagnosed, he ran to the Trumbull Library to find out more about MS. At the time, all he knew about MS was that it put people in wheelchairs.
“So I went to the library and opened up a book and it said ‘Multiple sclerosis is a chronic disorder of the central nervous system and autoimmune disease, which leads to death.’ I read that, closed the book, went back to the house and said, ‘This doesn’t look good,’” John said.
“MS causes paralysis, even at the end it takes everything … the only thing it doesn’t take is your heart and it doesn’t take your will. You choose to give that up if you want to, but I’ve met a lot of people who battle this to the very end.”
“It is very difficult to live with someone who isn’t who they used to be. In fact, I remember having a conversation with my wife, telling her, ‘If you wanted to leave me now, I would not be upset with you.’”
John says he did not have medicine for his condition until his 13th year with the disease. Instead, he says he always had strong family and friends who did not leave him.
In 2001, John’s younger brother Charlie Falzone was diagnosed with MS.
According to John, Charlie struggled greatly with drug problems throughout his life; he was divorced twice and despite John’s best efforts, he was homeless during a portion of his battle with MS. John would administer shots to his brother to fight the advancement and progression of the disease, but the treatment was not helping his brother.
John remembers begging the doctors to take Charlie off the shots, which result in painful symptoms and are not always effective in MS patients. After a while, the doctors agreed.
In 2010, multiple sclerosis took Charlie’s life. John says that because of MS, his brother lost everything.
“To watch him die was probably one of the toughest things I ever had to do because he didn’t have the will to live like I do, and didn’t have the support like I did,” John says.
By seeing the disease in his brother, John gained a new understanding of how relentless it could be.
“God thought he had suffered enough, and it was time to come home and not suffer anymore,” John says. “He is not suffering anymore where he is; I believe that, but it’s tough to watch though. For him to cry without tears, for him to want to talk and not talk, for him to scream when things hurt him and nothing came out – that was more than I could take. But sitting here now, my will to want to see an end to this and find a cure is stronger than it ever was. I go on for people like my brother, I go on for people I have met in the MS society. I go on for them.”
According to John, “The challenge of everyday is doing the things you did for years, and now you do them slower. I thank God I can do them slower – at least I can do them.”
John adds: “When I work, I am in pain, but I work because I can still work. I have always loved walking. Walking has kept me in shape for the past 29 years. It gave me a purpose to beat MS. It gave me the reason. Every day I can I get up and walk.”
When John speaks to people who have been recently diagnosed with MS, he tells them: “Don’t quit, ever. Don’t give up on yourself, ever. Battle this disease, and stay strong for you and your family.”
“I’m not going to let this get me,” says John. “You always want to battle it. Life is too good. No matter what happens to me, I want to continue living life.”
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