There will come a day when Mike Jewell awakens in total darkness.
Choroideremia, a genetic disease that attacks the nerve tissue in the back of his eyes, has progressed to the point that looking outside “is like seeing a Picasso painting,” he said. “It’s just a bunch of smears. Nothing’s very crisp. You just guess at things.”
He was diagnosed with the disease at 12, having known something was wrong years earlier.
“I was night blind as a kid,” he said. “I’ve never seen stars.”
Knowing the disease would eventually rob him of his eyesight, Jewell was undaunted, if not fatalistic.
“Honestly, I thought I’d be dead at 25, and that’s the way I tried to live,” he said. “I tried to cram a bunch of living into a small amount of time so I’d feel fulfilled when I was gone. I just assumed it’d be an accident, or I’d shoot off a bridge at 100 mph.”
There were several close calls. A drunk driver once veered into his lane while crossing a bridge near Chanute about 20 years ago, but both drivers came away unscathed.
Jewell was a licensed driver for about nine years, from 16 to 25, until being declared legally blind in 1995.
From there, Jewell took to his bicycle, until that, too, became impossible with his deteriorating eyesight.
He’s been hit by cars too many times to remember. One car clipped him, and Jewell wound up propped up on the car’s bumper as it pushed him into the intersection. Again, he made it through unhurt, “although I thought I had a heart attack afterward.”
But death never happened.
“And then one day I felt, I don’t want it to happen,” Jewell recalled. “I needed to live a little slower.”
NOW 45, Jewell still meets his daily challenges with his typical, laid-back, good-humored attitude.
While mostly homebound, Jewell has found plenty to occupy his time.
He keeps the house clean and prepares dinner for when his long-time companion, Christina Ramirez, returns home each day from working the day shift at Russell Stover Candies.
Before his eyesight worsened, Jewell worked at the old Haldex plant until an accident put a splinter in his eye. He then ran Radio Shack for several years until it closed. A stint for the Resource Center For Independent Living followed.
“I did volunteer work, and then I stopped because I needed to work on my house,” he said. “I want to go back to school. There are things I need to do.
All along Jewell felt he was called to something else, a greater purpose.
“Then one day it hit me. I needed to write a book.”
Jewell spent several weeks writing his life story, through a series of vignettes about growing up in Iola.
He used a software program that greatly magnifies text on the screen, although it, too, is cumbersome, Jewell said.
“I can’t write when it’s talking to me all the time,” he said.
Eventually, Jewell finished his book — unofficially titled “A Life Less Ordinary” — and submitted the manuscript to an editor. He’s also researching publishers.
“The editor liked the way it felt so real,” he said. “He said I have a good voice, like nothing he’s seen before.”
But with the praise came some constructive criticism.
“He said, ‘OK, now we know your audience,’” Jewell recalled. “Now I need to go back and get rid of this other stuff,” he said of the editing process.
In his book he recalled an instance in which a high school classmate had been picked on mercilessly.
“He was a kid who had never fought in his life — a real smart kid — and he didn’t want to fight,” Jewell said. “But this guy kept picking on him.”
So Jewell offered the bullied youngster a few tips should fisticuffs arise.
Sure enough, by the time the school day ended, a crowd gathered to watch the two.
“He did exactly what I told him to do, he punched the guy, and the fight was over.”
He saw his old pupil not long ago.
“Funny thing is, we’re both great friends with the guy now.”
The incident was prominent for more than one reason.
“One time I was making fun of a kid who didn’t deserve it, and he punched me in the mouth, so hard I put my tooth through my lip. I thought, ‘I deserved that,’ and I did.
“My book has stuff like that.”
Jewell also reflects on his attitudes as a child, even hiding his failing eyesight from his friends.
“I never really associated with people from high school because I felt weird I kept that secret for so long,” he said.
JEWELL’S writing has taken a back seat for the time being for more pressing issues.
He has applied on several occasions to be part of a clinical study on choroideremia in Philadelphia.
If approved, Jewell and Ramirez will move to Philadelphia for a two-year study, in which researchers will look at Jewell’s blood and tissue samples in the hopes of developing a specific virus strain.
“What the virus would do is attack the damaged nerves, and replace the bad protein with good. It essentially stops the disease where it’s at.”
Researchers in Canada and Europe have developed similar viral strains with encouraging results, but the U.S. study must still meet FDA approval.
“And then I have to pray I get selected,” Jewell said. “I’m on the list, but I haven’t been selected yet.”
The added sense of urgency is because Jewell’s 5-year-old grandson, Talon, also has shown signs of having the disease.
“They’d have a virus for my grandson,” Jewell said. “It’s too late for me, but for a child, it’s a cure. That’s why it has to be done soon.”
Choroideremia is linked to the body’s chromosomes, Jewell explained. That’s why only males are affected. Females are carriers.
“My mom was a carrier,” Jewell said. “My daughter’s a carrier.”
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