Newport
Levine was maintaining a full work schedule — and still does today — and continued an active life outside of work to the extent she was able to.
“I’m doing what I want to do,” Levine said in the 2015 interview.
Now, nearly two years since her diagnosis, Levine remains true to that spirit, even as the disease that overtime robs the body of its control of nerves and muscles continues to take its toll.
“Feb. 4 is the two-year anniversary of my diagnosis. I’m meeting my closest college girlfriends in NYC and seeing Hamilton,” Levine wrote in an email Friday
Levine will have been county manager for three years this week and she plans to remain on the job another six months until July.
“I announced in July 2016 that I was targeting July 2017 and that I’d reassess at year end in case progression moved faster or slower (since every ALS case is different, there’s really no predicting),” said Levine in an email she wrote while waiting last week for new knee braces at Massachusetts General Hospital. “Because I am hoping to make July 1, but worried that it may be earlier, I have avoided committing and then having a new date seem like a big deal.”
The county has begun advertising for the county manager’s position with a deadline for applications on Jan. 23
Levine said there has been some interest and they have received a handful of applications with the expectation of having someone ready to hire in May or June.
County Commissioner Ben Nelson has watched as Levine continued her busy work schedule, from home at times, but also coming into the office.
He and others have admired the way Levine has handled the progression of her disease.
“I think if it were me, I’d be tempted to curl up in a hole,” said Nelson. “But Jessie comes in the office. She is soldiering on. Her courage and humor are inspiring and I think they have helped her get through it.”
As ALS, which has no known cure and is also referred to as Lou Gehrig’s disease, has progressed, Levine wrote, her voice and motor control skills have been affected the most, which has impacted her work life.
But a feeding tube that supplements nutrition and hydration and the leg braces have “improved her quality of life,” she said
To help people understand her — those who around her regularly can “figure it out” — she uses an app called Predictable.
“She has a lot of patience if we ask her to repeat something,” Nelson said.
Other effects include muscles that atrophy and weaken over time and the need to rest frequently.
“Winter doesn’t bother me mentally but the cold stiffens my muscles and makes it harder to move,” Levine wrote. “I would be remiss not to thank Sheriff John Simonds for volunteering his parking spot behind the Newport county offices, which is the closest and flattest possible access I can get.”
Simonds said it made complete sense.
“To me it was a no-brainer,” Simonds said. “I told her she should be able to be right at the back door.”
Simonds and state Rep. John Cloutier, D-Claremont, said Levine has done a remarkable job given her circumstances.
“The leadership of the county has not suffered at all. She has done a great job and the county is in good shape,” Cloutier said. “She is energetic and the ALS has not affected her enthusiasm for the job.”
In his first few months as sheriff in early 2015, Simonds said Levine was an “enormous help” to him as he learned his job.
He has always had great respect for her, calling Levine a “great county manager” and that respect has only grown greater watching Levine continue her commitment to the county.
“It is very inspiring to see Jessie come to work ,” Simonds said.
Levine said a big concern is the risk of falling because her stability and reflexes are faltering
“Falling isn’t a big deal, it’s where and on what I land that could create problems,” Levine said.
Nelson said her colleagues and friends outside of work have rallied around Levine, helping in any way they can, for which Levine said she is grateful.
“I would also be remiss not to mention the absolute compassion and support from my coworkers and the commission and delegation,” Levine wrote in the email. “My colleagues open my water bottles and Tupperware, carry my bags and books, make phone calls on my behalf, help me navigate steps and snow, and even painted my garage. My friends and neighbors shovel, take my trash, bring me food, load my wood pellets. I am beyond lucky.”
Levine has also started a blog of poems at https://wenonahswords.wordpress.com/author/jwenonah/ and writes posts on Facebook.
Patrick O’Grady can be reached at pogclmt@gmail.com.
