If you knew your sight was slipping away, what would you want to see before it was gone for good?
For 17-year-old Sam McCalla, the answer is in faraway places and here at home: a Buddhist monastery in Thailand, the green hills of Scotland and, someday, his college commencement ceremony.
Sam, a senior at Frankfort High School, has retinitis pigmentosa, a degenerative disease that will slowly rob him of his sight – perhaps by his mid-20s.
His mother, Pam McCalla, executive director of the Simon House, wanted to give her four children chances to travel after high school, but with Sam, her youngest, she knew that trip needed to come sooner than graduation day.
She wanted him to have as much “visual history” as possible before the world around him goes dark and offered to send him anywhere he chose, regardless of the cost.
He boarded a plane bound for Thailand on Friday, the last day of school before fall break.
“I wanted him to be able to see things that he couldn’t picture, and when he picked Thailand I was shocked but kind of delighted,” Pam said.
“He understood that it was supposed to be very, very beautiful place, and as his field of vision gets smaller and smaller, there’s just no way he’d get to have the whole experience.”
Sam found the monastery, located in a rural area outside of Surat Thani, after a search online. He and his 28-year-old sister, Lauren Eargle, will spend 10 days in silence, meditating, practicing yoga and doing chores surrounded by Buddhist monks and other explorers.
“I’d been told by many people that Thailand is a beautiful place, and I’ve always wanted to go to a Buddhist monastery,” he said, sitting on the couch at his sister’s South Frankfort apartment the night before they left.
“I decided to experience it for myself.”
The first clue that Sam was losing his sight came on Jan. 20 – Sam’s 17th birthday. He was having trouble seeing at night, bumping into things when the house was dark.
His mother wasn’t worried at first; she thought her tall, teenage son was just going through a clumsy stage. But she gave in and offered to take Sam to the opthalmologist and buy a new pair of glasses for his birthday.
Sitting in the exam room, Sam agreed to a retinal scan. It was inexpensive, he said, so he thought, why not?
“She (the doctor) pulled up a picture of a healthy retina – it was like this big pink thing with some veins,” he said.
“And then she pulled out mine, and the big pink thing was there, but there was this ring of black on the edge.”
The doctor referred Sam to a retinal specialist, who confirmed the diagnosis: retinitis pigmentosa, a genetic disease that causes the cells of the retina – the part of the eye that captures images – to slowly die off.
The Foundation Fighting Blindness estimates that 100,000 people in the U.S. have the disease. Most lose their sight by age 40.
“And the rest is history,” Sam said, sarcastically calling it the “best birthday present I ever got.”
Sam and his mom knew instantly that his life would be different, but it took them longer to realize the countless ways that was true.
He gave up his dreams of becoming a microbiologist when he realized he wouldn’t be able to use a microscope. He left his school’s aviation program because he can’t fly a plane.
He will never drive a car, and his mom says there’s a significant chance that he will pass the disease on to his children.
Pam now warns her son before she walks toward him or touches him so he isn’t startled; she makes sure there’s a clear path between the front door of their house and his bedroom. He’s learning how to read Braille and use a white cane.
“It was a while before I realized this was going to affect his children, his career,” Pam said, adding that she learned even more when Sam was accepted into the Kentucky Office for the Blind’s program that helps the visually impaired become more independent.
“The chances of him being unemployed are much greater than someone who has sight – all the real impacts of his blindness are coming to light.”
But Sam is taking things in stride. He’s planning for college next fall, and he’s narrowed his choices to a handful of schools.
“I was taught early on to just sort of roll with the punches that life gives you,” he said. “So I’ve been fine with it. It’s just how life is.”
He would eventually like to become an English professor, a decision based on his love of reading and the support of his teachers over the years.
“They really fostered my love for books, along with my family – we’re a family of readers,” he said, adding that what he loves about books is “the ability to see, from other people’s perspectives, the world.”
But now it’s time to see the world for himself.
The monastery has a very strict schedule that starts with waking at 4:30 a.m. followed by two hours of yoga, breakfast and chores. Then there’s sitting meditation, lunch and more chores, standing meditation, a talk by the monks, tea, another talk and sleep at 9:30 p.m.
Sam and his sister must take a vow of silence, with the exception of two interviews with monks on days three and six and emergencies. He joked that it would be the longest he’s been quiet since he learned to talk.
Their trip will also include a day and a half in Bangkok, Thailand’s capital city, and a 12-hour layover in Tokyo. Lauren said she and her three brothers are all “pretty much best friends” and supportive of each other.
“He picked the place, and I said, ‘Yes, I’m in,’” said Lauren, who works for the Red Cross as an AmeriCorps volunteer. “I’m always up for new adventures.”
Sam has been a Buddhist for several years now. He says he meditates and studies the religion on his own, but isn’t a member of any organized group.
“The ideology seemed to coincide with my own,” he said of how he first became interested in it.
“The way and the reason you’re supposed to treat people – you’re supposed to treat people well because you’re supposed to treat people well, not because there’s some god out there telling you what to do.”
Pam, an ordained Presbyterian minister, said she’s happy to see her son exploring his spirituality again. He became an atheist after his father, the Rev. Mark McCalla, was murdered four years ago in West Virginia, she said.
The two Army deserters accused of his death were later sentenced to decades in prison.
“When his dad was murdered, he pretty much said he was an atheist,” she said, adding that Sam experienced “overwhelming anger” after the death.
“So I think I’m really excited that he’s got some kind of spiritual interest at all – I was shocked that he wanted to do this and reconnect in some kind of spiritual way.”
Sam’s doctors don’t know how quickly his sight will vanish, but a six-month checkup revealed that his field of vision is narrowing quickly. His mother believes he will lose most of his sight by 25.
But the family isn’t without hope.
Sam is taking vitamins aimed at saving his sight, and he’s optimistic that technological advances during his lifetime can restore what he loses. Australian researchers have restored sight – albeit grainy and colorless – with microchip implants, Pam said.
“He jokes about it a lot, because there’s nothing we can do about it,” she said.
“He’s always had that attitude, that when bad things happen, they happen. Our family believes that you deal with what you can, and what you can’t, you leave up to God.”