A Damariscotta man, legally blind since birth, is enjoying the best eyesight of his life after undergoing a lengthy and revolutionary series of surgeries.
Scott Hilton was born with degenerative myopia and astigmatism, the result, he believes, of a medication doctors gave his mother to prevent miscarriage.
“I could only see as far as arm’s length,” Hilton, now 42, said. Eventually, with the help of glasses and, later, contacts, doctors were able to improve his vision to 20/200-400.
The fraction means Hilton could see 200-400 point letters at a distance of 20 feet (normal vision is 20/20).
Hilton explains: “All I could see with corrected vision was the big E at the top of the chart at 20 feet.”
As a child, Hilton’s limitations kept him from “a lot of things normal people could do.” Despite a lifelong love of reading, he struggled in school. He couldn’t play sports, although he stayed involved as a fan and volunteer, and, when the time came, he couldn’t drive.
The latter has been “the only limitation in my life that I’ve struggled with – not having that transportation independence,” Hilton said.
Hilton attended vocational rehabilitation through the Dept. of Education, “but that was hard to do and try to be cool at the same time,” he said. “Nobody wants to be treated differently.”
“I’ve self-educated myself more since school than I did while in school,” Hilton said. He worked with a local cabinetmaker and found he not only enjoyed, but also possessed a remarkable aptitude for the work. Hilton’s abnormally acute nearsightedness – his ability to clearly see things close to his eyes – gave him an “eye for detail” for the intricacies of the trade.
Hilton founded his business, Concepts in Cabinetry, in 1994.
Throughout his life, Hilton has kept pursuing a cure. Even as a child, “I was working on the cutting edge of the latest technology,” Hilton said. Unfortunately, in the ’70s, eyeglasses were the cutting edge of technology.
“I was an experiment as one of the first kids in Maine to wear contact lenses,” Hilton said.
As Hilton aged, he faced the grim prospect of slowly losing his already poor vision. “There was a possibility my vision would deteriorate by the age of 40,” he said. The potential for cataracts, muscle deterioration and retina detachment with age all posed threats. The result of the latter, retina detachment, is total, irreversible blindness.
In 2005-06, Hilton was diagnosed with cataracts. For the next 3-4 years, his vision steadily deteriorated, until, in 2008, after meeting with cataract specialists, “a procedure was offered to me,” he said.
The procedure consists of implanting artificial lenses and, in Hilton’s case, attempting to correct his astigmatism at the same time.
The surgeons operated on Hilton one eye at a time, beginning in January 2009.
With the surgery – a relatively new technology – came risk, but “I was ready,” Hilton said. The recession had taken a toll on his business, and he decided the surgery was “a good opportunity, no matter what the consequences were.”
If, in a worst-case scenario, Hilton completely lost his sight, “I wouldn’t have had any regrets,” he said. “I was offered the opportunity of a lifetime.”
At the other side of the spectrum was the possibility for 20/20 vision. Hilton described it as “a 50-50 shot.”
Hilton experienced a frustrating setback in the initial surgery. “The implant was the wrong power to correct any of the vision in that eye,” Hilton said. “I actually couldn’t see anything at all.”
Despite the delay, Hilton didn’t despair. “I knew I was in good hands,” he said.
His doctors “were guessing at what power to put into my eyes to correct it,” Hilton said.
A week later, after another surgery, Hilton could see, but the adjustment in his vision was, again, not what his doctors expected. “I was losing my nearsightedness,” Hilton said, exchanging it for farsightedness.
The medical team continued experimenting, operating for the second time on his right eye and inserting a different lens, allowing him “mid-range” sight in his right eye while his left eye remained farsighted.
The implants improved Hilton’s eyesight to 20/100. For the first six months of the healing process, while doctors replaced and/or removed Hilton’s stitches (one eye “was wrapped like a roast”) he couldn’t wear glasses.
“It wasn’t easy for me,” Hilton said. “My vision still wasn’t right.”
Hilton waited for his eyes to adapt and heal, all the while guessing what he might ultimately be able to see.
Finally, after experimenting with a range of prescriptions, someone “came up with a pair of progressive lenses where I could see nearsightedness on the top and distance on the bottom,” Hilton said. “I was able to adapt and work better in my shop environment or reading, doing my normal routines.”
“I almost feel that it’s almost spiritual what I experienced because there’s nothing I enjoy more – besides my family – than to be able to work with wood,” Hilton said.
“I was eager just to get life back to normal and adjust to this new vision I had,” Hilton said. “I was definitely seeing better.”
Hilton recalls “moments of awe” while doing simple things – walking through downtown Damariscotta or looking out of the windows of his house. “I would stop and pause and realize I’m actually seeing something better and better as time went by,” he said.
A major hurdle for Hilton, pre-surgery, was his inability to recognize faces. The difficulty often kept him away from public gatherings. He might not recognize someone greeting him from across a room, leading to social awkwardness and, for some, a false perception of Hilton as “standoffish.”
In the fall of 2010, doctors removed the last of Hilton’s stitches, unexpectedly resulting in the further improvement of his vision. “Some of the tautness, some of the tension from the sutures has manipulated some of the eye structure and allowed my vision to improve,” he said.
“During the holidays, I started experiencing a lot of moments where, ‘wow, things are really changing,'” Hilton said. In a year’s time, his vision improved from 20/100 – the threshold of legal blindness – to 20/40-60.
“We’re not sure how sustainable it is, if it’s permanent, but we’re keeping our fingers crossed,” Hilton said. “By manipulating the prescriptive strength in my corrective lenses, I’ll be able to see even better with time.”
The rapid improvement in Hilton’s eyesight has brought exhilaration as well as new challenges. He suffers from headaches and bouts of vertigo. He misses his acute nearsightedness, yet enjoys his newfound farsightedness.
By and large, “It’s been a great experience,” Hilton said.
The improvement also brings a driver’s license within reach, although continuing stability, as well as Hilton’s confidence in his ability, is key.
“We’re exploring that option for the near future,” Hilton said. “My gut tells me I think I can see well enough to drive.”
Hilton is back at work now, too. He put the business on hiatus while facing the simultaneous challenges of surgery and the recession. Today, he works at N.C. Hunt, a Damariscotta lumberyard.
Hilton’s business, however, isn’t quite dormant. For 15 years, Hilton earned his living from Concepts in Cabinetry. The challenges of running a successful business can rob some of the joy from doing something you love, and now, Hilton is “re-appreciating why I like” cabinetry. “It’s not about the money” anymore, he said.
“I can put my heart and soul into [cabinetry] instead of seeing it as a profit or loss,” Hilton said. “I’m reconnecting with my original motivations of what I had in mind when I started the business.”
Hilton looks forward to traveling with his family – wife Carolee and the couple’s children, Brendan Mammina, 19, and Christine, 12. He wants to return to the same vacation spots and see everything he couldn’t see before.
Hilton also hopes his experiences, physical and otherwise, will help others with similar limitations. He hopes the physical experience of his surgeries help the medical community gain a better understanding of the latest technology and he hopes his spirit throughout the ordeal – his unwillingness to live a life of dependency, his four-decade-long search for a cure – will inspire others with limitations, visual or otherwise.
“I’ve blazed the trail in several ways,” Hilton said, from contacts to lens implants. Because of his experience, “the specialists are going to have a better idea of how to proceed on the next person,” he said. “I have also contributed and provided something for people in the future to make it easier for them and to maybe find solutions for their struggles.”
“You adapt to what you have and you make the best of it. I’ve just made the best of what I’ve had and tried to live my life normally like everybody else,” Hilton said. “All in all, I never wanted to be treated differently.”
Hilton, far from wallowing in self-pity, looks on his struggles as a character builder. “I don’t know if I would change a thing because I might not be the person I am today without going through the things I did,” he said.
