From behind thick-rimmed, black Ray-Bans, 15-year-old Ethan Nichols sees as little as 10 percent of the world around him. As time goes on, he expects to see less and less.
Ethan is learning how to live with declining vision after the “shocking” results of a regular eye exam in December. Retinitis pigmentosa, a rare genetic disease, will eventually cause him to lose his eyesight entirely.
He first started to notice a change when he began to trip over things. Lights would dip in and out of his vision depending on the angle he was looking. But now, he said, he can see the black creeping in.
“I think at first you’re just kind of frantic to find the cure that’s out there,” said his mother, Laura Nichols. “The cure that isn’t out there.”
When he was diagnosed, Ethan was driving on a learner’s permit, preparing for his freshman year of high school and planning on joining the football team, a sport he had played since he was 6 years old. Although still allowed by law, he chose not to continue to drive and can no longer participate in school sports.
I don’t want to hurt anyone, Ethan responded when asked why he chose to give up the independence of driving before he was forced to.
“I’m his chauffeur,” offered his older sister Abby, 17.
Laura Nichols’ is familiar with the effects of the disease. Her grandfather also suffered from it, but she always knew him as blind. She — along with Ethan’s father, Jake Nichols — will watch her son adapt to blindness.
“You have to just realize his life isn’t over,” said Laura Nichols. “He might drop further into darkness, but he has a really bright future.”
LEARNING TO BE BLIND
From now until complete vision loss, Ethan will prepare by working with the Idaho Commission for the Blind and Visually Impaired. Orientation and mobility training will teach him how to walk with a white cane, how to read with his fingers, how to use a computer and do everyday activities such as cooking and cleaning completely blind.
Kevin Jernigan, the commission’s orientation and mobility specialist, teaches visually impaired individuals how to get around with a cane. Class participants block out the remainder of their vision with shades and learn for the second time in their lives how to complete basic tasks, this time non-visually.
“Once they’ve done something like that,” Jernigan said, “they can walk away with confidence that they can be independent.”
Ethan is one of 14 blind or visually impaired students between the ages of 15 to 21 in the Treasure Valley working with the state’s commission for the blind. He will be the first visually impaired student at his school, Cole Valley Christian School in Meridian, since its founding in 1972. His counselor met with administrators to determine how they can best help him get through the school day.
“Being sad is a waste of time,” Ethan said. “You just have to live as normal as you can the best you can.”
Not long after the diagnosis, Ethan’s family realized his time to see the world was dwindling. The question came up of how to fill that time with sights he could remember.
A burgeoning history buff, Ethan hopes to use his remaining eyesight to see some of the defining historical sites of the 20th century.
If requested, Ethan can name off tanks used in World War II. And some guns. Most Star Wars guns were based on WWII guns, he said, despite his earlier assurances that he did not know much.
Having had great-grandparents who served during the war, Ethan chose a list of last things to see that not many 15 year olds would: a trip to Europe in the summer of 2019 for the 75th anniversary of D-Day to see historical WWII locations.
He wants his “vision trip” to be filled with history, with images of eras that fascinate him. He wants to experience the impact of seeing with his own eyes significant places such as concentration camps.
Ethan’s uncle set up a GoFundMe page for the family as sort of a savings account — little by little they could add in each month to work up to the high cost of the “vision trip.”
But when the GoFundMe was shared on Facebook, it quickly gained traction, surpassing their goal of $15,000 in just 13 days.
The response was overwhelming, Laura Nichols said. People who knew the family were finding out about Ethan’s diagnosis through social media. The reaction, she said, was unanimous support.
“I don’t understand how somebody can do that for me,” Ethan said. “It probably made my whole life.”
He’ll never forget his upcoming trip, Ethan said, but more than that, he’ll never forget the outpouring of donations from friends, family and strangers.
It’s a donation that he wants to make to someone else in return. Ethan hopes to start a nonprofit for teenagers like himself who are slowly losing the picture of the world around them.
“We’re going to call it ‘Light in the Darkness,’” he said. “Give them the trip of their life before they can’t see.”
IN THE AIR
On Aug. 25 at the Warhawk Museum in Nampa, Ethan and Abby climbed the ladder into a North American B-25 Mitchell, a WWII medium bomber. Invited by Warbird Roundup event coordinators, the siblings spent 15 minutes flying in a piece of history.
Ethan peeked out from behind the glass of the nose seat and gave his parents a thumbs-up. Laura and Jake Nichols watched uneasily from the ground as their children flew overhead in a plane that can reach up to 272 mph.
“I’m not scared,” Ethan said before boarding the bomber. “You’re just in a tin can, in the air.”