‘She Doesn’t Back Off’: Sullivan County Manager Battles ALS Diagnosis
August 23, 2015
By David Corriveau, Valley News Staff Writer
For 4½ months between the late-summer night that friends noticed her slurring her words and the midwinter day that neurologists identified the source of the problem, Sullivan County Manager Jessie Levine wondered which enemy she’d be fighting. After ruling out a stroke, a brain tumor and Lyme disease as causes early in the autumn of 2014, Levine’s primary-care physician in New London referred her to a neurologist at New London Hospital. By December, when the Springfield, N.H., resident and former New London town administrator went to the neurology clinic at Dartmouth-Hitchcock Medical Center, she was losing more control of the muscles in her soft palate, further complicating her speech. By January 2015, Levine was losing strength in the fingers of her right hand, making it harder to hold a fork, open and close zip-lock bags and eat with chopsticks. The official diagnosis came on Feb. 4: amyotrophic lateral sclerosis — a disorder better known as Lou Gehrig’s disease that breaks down the human body’s systems for controlling nerves and muscles. “I almost hoped it was something like cancer, something that could be treated,” the 45-year-old Levine said during a recent interview at her office in downtown Newport. “From slurring your words to being told that you have a terminal illness with no known cure … I never saw it coming.” Levine knows what’s coming next: She already hooks herself up to a machine at night to help her breathe in her sleep. Sooner than later, she’ll start using a device she recently acquired from the Cape Cod-based Compassionate Care ALS support group to amplify her voice. And while she still plays golf with friends and walks briskly through the streets of Newport, Levine sees the future in a friend from nearby Ando-ver, N.H., in whose honor she led an ALS ice-bucket challenge last summer, about a month before her own symptoms manifested themselves. He was still pretty mobile at that time,” Levine recalled. “Now he’s in a wheelchair, and needs a straw “I almost hoped it was something like cancer, something that could be treated.” Jessie Levine, on her ALS diagnosis to eat and drink. The idea that lightning could strike twice like this. … We’re the same age, and live 30 miles apart.
Sullivan County Manager Jessie Levine, left, speaks with county commissioners Ben Nelson, Jeff Barrette and Ethel Jarvis during their monthly meeting held at the Sullivan County complex in Unity, N.H., on Aug. 17, 2015. Levine was diagnosed with ALS, or amyotrophic lateral sclerosis, earlier in 2015. (Valley News – Geoff Hansen)
“It’s just bizarre.”
Bizarre, and still confounding to clinicians and researchers who have been searching for causes and treatment of ALS in the nearly 75 years since Gehrig died of the condition just two years after retiring from professional baseball.
“It’s all still a work in progress,” Elijah Stommel, a DHMC neurologist, said recently, adding that among the mysteries is why about 60 percent of patients diagnosed with ALS are men.
“Nobody knows why,” Stommel said. “It’s not because women are harder to diagnose. It’s probably genetic, or maybe there are certain types of jobs where men are more exposed, like construction or agriculture.”
There also appears to be a connection with athletics: In addition to Gehrig, professional athletes whom the condition has claimed range from Baseball Hall of Fame pitcher Catfish Hunter and a number of veteran boxers and football players to Upper Valley golfer Jeff Julian, who died in 2004. After former Boston College baseball player Pete Frates developed the disease, friends started the ice-bucket challenges that evolved into a fundraising phenomenon last summer for the ALS Association, which raises money for research into the causes of and possible treatments for the condition.
“If you’re a particularly active athlete,” Stommel said, “it could be that you’re overtaxing your motor neurons.” Other than some sneezing issues and minor troubles chewing that she didn’t think anything of at the time, Levine, an active golfer and runner, seemed to have everything going her way when her bolt from the blue hit in mid-September of 2014.
To that point, she was running on all cylinders: After a year as town manager of Bedford, N.H., she’d moved the previous January back to the Upper Valley — where, following her tenure in New London, she had worked for a year as assistant town manager in Hanover — to serve as manager of Sullivan County, where she earns a yearly salary of $108,665.
She was back in her house in Springfield, which hadn’t sold during her time in Bedford.
Then on the first night of the annual conference of the International City/County Management Association in Charlotte, N.C., she was meeting with the New Hampshire delegation of fellow municipal and county administrators.
Earlier in the day, she’d competed in, as she does every year, the conference’s 5-kilometer road race.
“I had run my personal best for the distance for my 40s, something like 24:12, and was the sixth woman overall,” recalled Levine, who ran track and cross country at Hopkinton High School in the mid- to late 1980s. “I joked that I was the fastest female county manager in the U.S.” In the afternoon, Levine went with a Dartmouth classmate to a Carolina Panthers football game, before returning to the conference for the evening.
The other Granite State managers and administrators “were making fun of me because I was slurring my words, that I must have had more than a few drinks at the game,” Levine said. Once they realized she hadn’t, kidding turned to near-panic.
“We thought she may have had a stroke,” Sunapee Town Manager Donna Nashawaty recalled, “and were so concerned we persuaded her to make a doctor’s appointment to be safe.” While she scheduled a visit upon returning to New Hampshire, Levine “didn’t feel like my life was in danger.” While waiting for results of tests, however, she reviewed recordings of meetings of the Sullivan County Commission at which she spoke from late spring into midsummer.
“I went back to May, and it’s like a different person,” Levine recalled. “By July and August, (the slurring) seemed to become more noticeable.
“I also asked a friend who attended my master’s degree presentation last summer if he recalled anything — that was late August — and he said he did and he thought I was just nervous. And I remember being nervous because I’d had difficulty speaking and was wondering if it was obvious in front of a roomful of professors and students.”
nce the diagnosis became clear, Levine alerted commissioners, county colleagues and area peers as well as area news organizations to her condition.
“I don’t speak as much at meetings, but I can write,” said Levine. “I can give (commissioners) the information that they need.
“I’ll keep working as long as I can. The commission has been wonderful.”
Claremont resident Jeff Barrette, the chairman of the Sullivan County Commissioners, said he and his colleagues think Levine has a “great attitude” about the adversity she is dealing with.
“Obviously, she’s such a bright and talented person that it’s a shame to see her speech going away from her, but it certainly hasn’t affected her abilityto do any of her job. As long as we can continue to make accommodations, we will certainly continue to do so,” Barrette said. “She’s such an asset to the county.”
The county delegation, made up of state legislators from Sullivan County, has also been very supportive, Levine said. “People around here take care of each other. I consider myself lucky. It’s amazing that a diagnosis like this will make you feel lucky. It sounds like such a cliche when you hear Lou Gehrig saying he considered himself ‘the luckiest man on Earth’ (during his 1939 retirement speech at Yankee Stadium), but it’s true,” Levine said.
“You realize all the good things that are part of your life.”
New London named its Route 11 roundabout for Levine earlier this summer, in recognition of her 11 years as town administrator.
“At the ceremony, my dad said, ‘You’re having the time of your life, kid,’” Levine recalled. “‘Life should be fun and special.’ ” Her peers in the Municipal Managers Association of New Hampshire gave her life a dose of both this past June by putting on an ice-bucket challenge in her honor at Hampton Beach, proceeds from which went to the northern New England chapter of ALSA.
Amy Coyne, fundraising and community relations manager of the regional ALSA office, said the challenge raised slightly more than $2,500 — the most raised so far this year by any of the third-party activities that her office has helped coordinate.
That response prompted Coyne to ask Levine to throw out the first pitch of the New Hampshire Fisher Cats game on Aug. 1, when the minor league baseball team’s entire roster, coaching staff and workforce took turns dousing themselves with buckets of ice in a ritual that has become ALSA’s biggest fundraiser nationwide and worldwide since friends of Frates started the trend in 2014.
“I thought of (Levine) for this right away,” Coyne recalled. “For people who are not familiar with ALS, it puts a face on it to have someone like her, whose living her life, to be out there like that. She’sso positive. To have people who are so kind, so fun to be around, shows that with ALS, there’s no discrimination. You could be a movie star. You could be a local town manager. You could be someone’s grandmother.”
At DHMC, Stommel said “we’ve been getting more referrals to our clinics as ALS becomes more known. We see patients in their mid-30s up to the mid-70s, most in the 50 to 70 range. “It’s tragic to see somebody as young as Jessie, so vital.”
That vitality is serving Levine well, according to Ron Hoffman, founder of Compassionate Care ALS on Cape Cod. “What I respect about Jessie is that she’s really living her life,” Hoffman said. “She’s living it very thoughtfully, very consciously.”
Hoffman estimates that Compassionate Care helps some 400 families of ALS patients with services ranging from breathing machines and adaptive equipment for speaking and getting around to education and counseling for relatives and patients alike, and finding places to stay on vacations. During a recent long-weekend tour of the Cape and Martha’s Vineyard, Levine and a friend stayed at a house in Falmouth, Mass., that the organization is renovating into a bed-and-breakfast for ALS patients.
“We work with people from the beginning of the diagnosis to their death,” Hoffman said while preparing to help organize last weekend’s Falmouth Road Race, which in recent years has raised more than $300,000 for his organization. “It’s about showing up, being present, for the patient and the family.”
Levine, who is single, describes herself as grateful that such resources are available to supplement help from her family — her parents still live just down Interstate 89 in Hopkinton — and friends, including Upper Valley colleagues, some of whom are still adjusting to the idea of her mortality.
“We text all the time, and I knew about the diagnosis, but the ceremony at the roundabout in New London was the first time I had a chance to actually talk with her,” said Hanover Town Manager Julia Griffin, for whom Levine worked for a year. “I was shocked by how much her voice had deteriorated.”
Levine’s determination was another matter.
“She’s feisty,” Griffin said. “She’s a fighter. She doesn’t back off. Staying busy, for her, is second nature.”
Levine has been staying busy at work recently by working on bringing higher-speed Internet service to the Sullivan County nursing home at the county complex in Unity and helping oversee programs that prepare inmates for life after release from the county jail.
“There’s lots to do at work, and this is where I wanted to be,” Levine said.
“(ALS has) opened my eyes about working with a disability, about people defying expectations. I have difficulty speaking, but my brain is working fine. Now I’ve learned a new level of what people go through. All the little stuff that used to bug me at work doesn’t bug me anymore.”
Needing a golf cart to play 18 holes does bug Levine, but not enough to keep her off the course.
“I want to golf as much as I can this summer,” she said. “I want to believe I’ll feel the same next summer, but who knows? Right now I’m trying to balance the urgency to do it all. … Some of my friends ask, ‘What’s on your bucket list?’ I don’t have a bucket list. I’m doing what I want to do.”
David Corriveau can be reached at dcorriveau@vnews.com and at 603-727-3304.
