As Vermonter Neil Taylor struggled to recuperate from hours of surgery, followed by weeks of unconsciousness and sedation and months of physical therapy to relearn how to function head to toe, the twentysomething’s mind bounced between two thoughts.
The first: “I can’t see.”
The second: “I should be writing about this.”
His mother, Alison Taylor, understood. Reeling from the trauma of witnessing her son confront cancer and the prospect of death or a lifetime of disability, she nonetheless believed “writing can serve as a therapeutic tool to process, to make peace with, and to ‘own’ the unbearable.”
That’s why, a decade after the discovery of the tumor, the two are telling their story in a new memoir, “The Life We Got: Losing Sight and Gaining Vision.”
“We started as simply as we could, one step at a time,” Alison Taylor recalls in the preface. “We chose one scenario — the night Neil called to tell me he had gotten results of an MRI his dad and I didn’t know he had had. Neil would write about that night from his perspective, and I would write about it from mine.”
Her son, now 38, knew he had the audio computer technology to help chronicle his memories. Even so, he worried he wasn’t old enough to warrant a memoir.
“Having lost nearly everything that I took for granted — that the majority of young people can and do and probably should take for granted,” he went on to reason, “well, maybe I’ve earned a sort of cosmic permission to share the story of my life so far.”It begins more than three decades ago, back when he walked to the two-room Westminster West schoolhouse where his mother taught, then graduated to the grade nine through 12 Putney School where his father worked as plant manager.
Turning 18, Taylor surfed six months in Costa Rica, then played lacrosse at the University of Vermont, earned a degree in sociology at the University of Redlands in California, skied a year in Utah and returned home to work as a carpenter and stonemason before settling at Putney’s Greenwood School to teach boys with dyslexia and other learning differences.
In the fall of 2007, he noticed his own visual challenge: Twice a day for six or seven seconds, his left eye would speed in and out of a tunnel. Darkness would close in, turn everything black and then open again to full sight. He figured he needed more sleep. But a friend who was a nurse sent him to a doctor, who, in turn, sent him for an MRI in the winter of 2008.
That’s when Neil Taylor learned he had a tumor the size of an orange embedded in his brain.
Doctors couldn’t believe the Vermonter was able to walk or talk, as they estimated the growth had festered a half-dozen years in his left lobe — the human hard drive for language communication and comprehension. Told to travel immediately to Dartmouth-Hitchcock Medical Center in New Hampshire, the then-28-year-old called his parents.
“I want you to sit down,” he said.
Soon they were on their way, too.
Doctors scheduled an operation. But the day before, Neil Taylor began to convulse, then collapse from massive seizures. Unconscious, he was wheeled into surgery upon first light on Feb. 7, 2008.
Waking in darkness, he figured physicians had removed the tumor sometime before sundown.
He didn’t realize he had been unconscious and then heavily sedated for weeks.
Unable to breathe, he needed an oxygen tube and, later, a tracheotomy. Unable to swallow, he needed to spit constantly into napkins so as not to choke on his saliva. Unable to eat or exercise, the 6-foot-2 athlete had withered from 220 to 150 pounds.
But he was alive and now alert. His family tearfully rejoiced. No one yet knew the tumor had squeezed the optic nerve that transmits images to his brain. The connection didn’t survive the sudden release in pressure after surgery.
The patient was the first to surmise a problem.
“Every time I was conscious I would attempt to look around and get my bearings, but it was as though I hadn’t even opened my eyes,” he writes in the book. “I was living in total darkness.”
Handed a marker and whiteboard, he scrawled a message: “IcantseeIamsosad.”
His mother saw the jumble of letters and felt her heart shatter.
“How much more can we take?” she cried to her husband, Jim.
“As much as they dish out,” he answered.
And so it went as Neil Taylor endured outpatient radiation treatment every day for six weeks, then a year of chemotherapy with temozolomide capsules so poisonous his family was prohibited from touching them.
Day by day, year by year, he slowly built a new life as he trained to become a massage therapist, hung a “Blind Masseur” sign outside his new Brattleboro home and met a neighbor who’s now his girlfriend. His sunglasses and a scar over his left eye are the only outer hints of his surgery. But inside, the memories still cut deep.
“I became aware, as I began writing, that I was embarking on a long struggle to find myself, to become whole,” he notes in the book. “It was hard enough living the life I’d gotten when I’d had no choice. The pain of reliving it over again, casting light on all the details, and ruminating on the original suffering was a choice and one I could not always stick with.”
That said, he and his mother are set to read from their memoir Friday at 6 p.m. at Everyone’s Books in Brattleboro. (The self-published 478-page paperback also can be ordered by contacting the store through its website or Facebook page.)
“In sharing my journey my hope is that someone out there is helped and sustained in dealing with his or her own life challenge,” Neil Taylor writes. “Despite overwhelming odds — a devastating loss and what will likely be lifelong limitations — I wake up every morning still here in this crazy, beautiful world, knowing that each day is one more gift.”