AFTER RADICAL SURGERY, LIVING HIS LIFE IN FULL
Esopus man, 29, celebrates quarter century of living with half a brain
ESOPUS, N.Y.» Twenty-five years after a life-or-death surgery in which half his brain was removed, 29-year-old Jeffrey Lewis is thriving.
With the surgery to treat Rasmussen’s encephalitis, a rare disease that eats away brain tissue, Lewis lost the right side of his brain. As a result, he is required to use a brace on his right leg. He also does not have the use of his right arm and suffered the loss of his right field of vision.
But that hasn’t stopped him from living every day to the fullest, whether it’s at his job as a teacher’s assistant at Head Start on Colonial Drive in Kingston or enjoying one of his many hobbies.
Lewis said he’s always liked being around children, and children like being around him.
“Kids have always been attracted to me,” he said. “I like working with them more than the public.”
He said he can’t recall anything about the surgery, which he had when he was 4 years old.
“This is what I’m used to,” he said. “I don’t know any other way.”
His family recently threw a huge party in celebration of the 25th anniversary of his surgery. His gifts included a large quilt with photos of him and photos he’s taken.
With Lewis being a bit of a maritime aficionado, the whole affair had a nautical theme.
Lewis said he previously tried working in retail and in a nursing home, but neither job worked out. So he went just down the road to Ulster BOCES in Port Ewen and got a child development associate degree. For the past eight years, he’s worked five-hour days, five days a week. This summer, he was enjoying one of the perks of the job: a seven-week summer vacation.
In his free time, Lewis serves with his mother on the auxiliary of the Esopus Fire Department, where his father and brother Evan, who works for the town of Esopus, are members. His other brother, Kyle, 24, is a professional firefighter in Hanahan, South Carolina, a small city near Charleston.
Jeffrey Lewis acts as the fire department’s official photographer and videographer.
“Pretty much whenever the whistle blows, I’m running to get fire trucks in motion,” he said.
Photography comes naturally to Lewis, and he said he often takes advantage of their property, which goes
down to the Hudson River, to take pictures of birds and other wildlife, as well as the many crafts, big and small, that navigate the river. He’s sometimes gone for hours.
He said he keeps track of what traffic is moving up and down the river via a cell phone app and heads down when he sees something interesting coming by, like an eight million pound component for an electrical station that was recently towed down the river from Coeymans in Albany County.
He’s also a train buff. A railroad crossing sign hangs on his door and he owns several train-related DVDs. He often photographs trains as well.
Last year, his parents took him to the Mountain Washington Cog Railway in New Hampshire. The cogdriven
train traveled up an extremely steep grade, he said, terrifying his mother, who he said was too frightened to look out the windows on either the ascent or descent.
Another passion of his is weather. He showed off his latest book of weather observations, formerly published by the company that prints the “Farmer’s Almanac.” His observations span nearly every day for the past 10 years and note the daily temperature, humidity and weather events of significance.
He shares his observations with Albany CBS affiliate WRGB’s Weathernet 6, which shows them during their local newscasts.
Whenever a storm roars through, he rushes to the porch to shoot a video.
“It’s a big thrill,” he said. But one time he was in for
quite a scare.
“I was under the porch one afternoon out from filming this storm, there was this shed next to our garage and all of a sudden a bolt of lighting came down and struck the ground so close,” he said.
Lewis also bowls in a league with his mother at Patel’s Kingston Lanes in the town of Ulster.
His mother, Lynda Lewis, has called Main Street in Esopus home for her entire life, growing up just up the street from the large late 19th century farmhouse where the family lives now.
Standing inside as the family’s five chickens roamed the property and their dog Emma came up to the table, she recalled Jeffrey’s childhood and the surgery.
She said Jeffrey lived a perfectly normal childhood
and had progressed normally through the first three years of his life when things started to change, and Jeffrey began suffering from seizures 24 hours a day.
“He was taking toxic levels of medication,” she said.
They had to fly to a children’s hospital in Miami, because the surgery he needed was not available in New York at the time.
The surgery, the family was told, had an 80 percent success rate. The other 20 percent ended up with the patients dying. But their doctor had succeeded in five previous surgeries.
After the eight-hour surgery, the surgeon couldn’t say when he would utter a word.
He did, and it was “mom,” Lynda Lewis said.
He had to take medications for about a year, but
he’s been off them and been seizure-free ever since the surgery, she said.
“He’s a medical miracle,” she added.
Jeffrey can’t drive, so she takes him to and from work each day.
Lynda Lewis owns her own small cleaning business, and she works her schedule around the trips.
“My clients are understanding,” she said.
Recently, they attended a conference of brain surgery survivors in Florida, drawing 50 to 60 children and adults who met at the Walt Disney World resort.
His mother said he even served as a speaker.
Closer to home, he inspires a lot of people with his positive attitude, she said.
“He never complains,” she said. “He’s happy to take on each day.”