Via Boston Globe: http://www.bostonglobe.com/metro/regionals/north/2013/06/26/for-nahant-family-life-goes-with-als/EsGFyFBArgXF7i86T715UN/story.html
When they started building a home in Nahant in 2000 and Cynthia got pregnant, they were looking forward to all the possibilities of the future.
But in 2003, George, now 53, was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, and the couple’s life changed forever. By 2005 he had to start using a feeding tube. By 2006, he needed a ventilator to breathe.
Cynthia Mazareas, 49, said her husband’s illness has led them to redefine what they want out of life.
‘I think now that we’ve sort of come to terms, it’s more like rewriting the story. It’s a different story than the one we had imagined, but that doesn’t mean it’s not a quality story.’ Cynthia Mazareas
On Monday, the Mazareas family, joined by about a dozen friends, traveled to New York City to accept the Courage Award from Prize4Life , a nonprofit that works to find treatments and cures for the disease that took former governor Paul Cellucci ’s life earlier this month. There, Cynthia Mazareas delivered a speech on behalf of her husband, who spent weeks writing it when he was more capable of using a computer.
During the last decade, the Mazareases said, they have raised more than $1.5 million for the fight against ALS through events they were either involved with or inspired. However, Thomas Leavitt, Prize4Life chief development officer, said the Mazareas family earned the Courage Award not because of fund-raising, but because of their resilience, spirit of hope, and unwavering dedication to each other.
“The physical intimacy of their marriage would decline,” Leavitt said, “but they weren’t going to change their emotional intimacy or the relationship with their daughter, which was a big impetus to continue living the lives they’re living.”
Amyotrophic lateral sclerosis , also known as ALS, is a neurodegenerative disease that rapidly robs a person of the ability to initiate and control movement and eventually leads to paralysis. According to the ALS Association, this muscle atrophy leaves patients with an average life expectancy of two to five years. This year marks 10 years since George’s diagnosis.
Mazareas said that while she and her family would go on stage to accept Prize4Life’s honor, she shares it with everyone who has stuck by their side while George has progressively lost physical abilities.
“It’s very hard for some people to see that, and that’s where courage comes in,” she said. “I think our friends are as worthy of a courage award as we are. They’re not afraid to look into the face of ALS and deal with it.”
For George Mazareas, his participation in ALS charities like Prize4Life and The Angel Fund stems from a determination to help find treatments and cures.
“For me, it’s very emotional because I think of the PALS [people with ALS] that have gone before me and passed away — and I have known about 30 people — then I think about all the future ALS patients, and I feel a duty to do my part,” Mazareas communicated through his wife.
Since he started using a breathing tube, Mazareas cannot speak aloud. He communicates with his family with a numbers and letters system, a language Eleni learned as a Father’s Day present when she was 5.
To start, George mouths a number, 1 through 8, each indicating a specified series of letters, words, or numbers. The speaker starts reciting the series, waiting for George to blink, meaning they’ve reached the correct letter. They repeat the process until words and sentences are formed. Sometimes George looks away instead of blinking, a sign that a letter or word was miscommunicated, and they start over.
“George says that this is one of the best things I ever did for him, finding this communication device,” Cynthia said, adding that after rows one through five were established, George added a sixth (“who, what, when, where, how, why”), seventh, (“new word”), and eighth (numbers 0-10).
Despite the emotional challenge of seeing her husband in this condition and the patience required to communicate with him, Cynthia said he is still very much her partner in marriage and parenting.
“George is the big picture thinker, the visionary, and I’m more of the executor,” said Cynthia, an attorney. “He’s still my go-to person in life. George still does a lot of the big thinking in the house and gives me a lot of good advice and guidance and direction.”
For Eleni, her dad is the man who taught her about Marvel comics and Harry Potter, and like any other father and daughter, sometimes they butt heads.
“Never argue with him because you’re probably going to lose,” she said with a smile.
Cynthia said Eleni has picked up on her dad’s strength.'
“She’ll say, ‘The thing I’ve learned the most from my dad is you can get knocked down, but you can get back up again.’”