More from the series
Laughing in the dark
Jordyn Walker almost died in 2017 from a mysterious illness. In December it struck again, changing everything.
Part one: Bleeding from her eyes, Missouri teen’s illness mystifies doctors and captivates world
Part two: ‘I’m f***ing blind?!’ Missouri teen learns her fate, but a mystery lingers
Part three: ‘I want it to be over.’ Despair descends on Missouri girl mysteriously struck blind
Part four: Laughing in the dark, blind Missouri teen finds her way — and life-saving answers
(Part two of four)
Jordyn Walker doesn’t care if anyone in the hospital hears her shout.
“I’m f***ing blind?!” she yells over and over. “I’m f***ing blind?!”
Six days before, she entered the University of Kansas Hospital emergency room fully sighted, but in the midst of a violent episode of vomiting, diarrhea and stomach pain.
Soon her hands swelled. Her face ballooned, turning purple with a rash that washed over her like a tide. Her green eyes bulged from internal pressure, feeling as if they would pop from their sockets, sending her into emergency surgery.
Now, family, doctors, others cram into the Smithville teen’s hospital room to share the reality, one that will test the very resolve with which she’ll live the rest of her life.
Her mom, Kendyll Walker, tried to tell her but couldn’t get the words out.
“We must address the elephant in the room,” a counselor begins. “Your vision.” The moment brands itself into Jordyn’s mind: Dec. 18, 2018, 1:22 p.m.
Whatever other medical gobbledygook the counselor spits out, Jordyn doesn’t hear. Lying in her green hospital gown, all she hears coming from the blackness is that she is only 15 years old and will never see again. The endless list of what it means engulfs her:
She will never see another sunrise, tree, building or bird of any color.
“I will never see my mom’s face again,” she would say. Or her dad’s or sisters’ or friends.
She will never see another movie, or the beauty of a painting, or photos of her wedding or the face of her future spouse.
Her teenage plan to get her driver’s license at 16 and one day buy a small pickup is gone. Her plan to see the world, gone.
As a child, Jordyn used to play the game of terrible choices: If you had to lose either sight or hearing, which would it be? Jordyn invariably picked sight because, so used to dancing in the kitchen, in her car, in her room, she couldn’t think of living without music. She wonders now if that was the wrong choice.
She wants to scream.
“Do it. Get angry,” her mother prompts.
“I had been poked, prodded, tested, “ Jordyn would later say. “I felt like I had been there for years. I had been drugged up constantly. I couldn’t sleep. I couldn’t eat. I was a mess. Then come to find out I’m going to be blind?! I was like, ‘This doesn’t happen! What do you mean? This doesn’t happen to — I don’t want to say, ‘to people like me’ — but it doesn’t happen in reality. This isn’t ‘Grey’s Anatomy.’”
Jordyn’s father, Keith Walker, works as an environmental project manager. Intense, regimented, a former West Point cadet, his well-meaning efforts to inspire sometimes come off as domineering, even bullying, to his daughter. Inside the intensive care unit, he arrives with material that he hopes will rouse Jordyn’s spirits. She had shown an interest in competitive archery, so he begins to tell her how he Googled this other archer, who despite being blind, went on to achieve great things.
Jordyn stops him short.
“Shut up! I don’t care,” she snaps. She thinks, “I’m not listening to a word you’re saying right now! I was just told I’m blind!”
She kicks everyone out of the room. She feels her way to the portable toilet near her hospital bed.
Twenty minutes pass.
“I screamed out of pain. I screamed out of frustration,” she would later say. “And then, I was done.”
Jordyn’s family ambles back into her room. Jordyn has calmed.
“I was still going to be blind in 20 minutes. I was still going to be blind in 20 years,” she reasoned. “Why am I going to sit here and mope and be sad about it? I have so many other things to do.”
Like tell a joke:
“OK,” she says to the group. “Let’s go finesse some free snacks at Costco. Who’s going to say no to the blind girl?”
“My escape is dark humor”
April, four months later: Jordyn, head up and eyes forward, sweeps her white cane left and right, striking the walls and lockers, which echo with a clang inside the halls of the Kansas State School for the Blind. Her life’s plan upended in a single moment, she literally, day to day, is now forced to feel her way in the dark.
In mid-March, she began coming to this school she’d never heard of, a 10-acre campus oasis in Kansas City, Kansas, serving blind and other disabled children since 1867.
Everything she perceives now is through what still seems a confusing jumble of sounds, smells, her untrained touch, the mind’s eye of her imagination and the energy of the space around her.
“Oh, hello!” Jordyn says in mock greeting to a locker, smacking into it with her cane, then moving aside. “I have no idea where I am.”
She fights daily against anger, against frustration. “It’s absolutely crazy how much energy goes into being blind,” she would say.
The mental concentration it takes to learn Braille, to dress, to handle her food, simply to walk forward into blackness, trusting senses she never relied on so heavily before, exhausts her. She used to have masses of energy after high school. Now, after school, she often collapses into bed.
“I know that when she throws her fits, she’ll say, ‘F*** this. F*** being blind. F**** Braille. I just want to die,’” her sister Samantha said.
But she also begins each morning resolved.
“She doesn’t want anyone to feel sorry for her,” Samantha said. “She doesn’t want any pity. She wants people to care, but she doesn’t want anyone to say, ‘Poor you.’
“She hates that. She thinks it’s annoying.”
In December, after she went blind, a GoFundMe page went up on her behalf, eventually raising more than $42,000.
Suddenly, albeit briefly, Jordyn found herself in the national spotlight after TV news and multiple other media outlets, including Newsweek, People, Yahoo and London’s tabloids, wrote of the Missouri teen struck blind by a mysterious illness. Many of the outlets, however, had gotten the story wrong, misleading readers with headlines such as “Missouri Teen Blinded by Devastating Mystery Illness After Cruise” that inaccurately linked the cause of her illness to their vacation 18 months before.
BEHIND OUR REPORTING
Why a story on Jordyn Walker?
The early news of Jordyn’s mystery illness went viral in January. Yet as quickly as the news flashed, it died out as the international media moved on. An editor at The Star knew Jordyn’s family and messaged her father to say a reporter was interested in talking to them post-headlines. Early interviews quickly revealed that many of the viral stories had been wrong or misleading. As is typically the case, the story was far more complicated. Read more by clicking the arrow in the upper right.
How much time did the The Star spend reporting on the Walkers?
Reporter Eric Adler and photographer Tammy Ljungblad spent five months, off and on, with the family. Jordyn left the University of Kansas Hospital in late December. Adler interviewed her father, Keith Walker, in-depth in January, which by February led to multiple lengthy interviews with Jordyn and her mother, Kendyll Walker. The Smithville school district did not allow The Star access to Jordyn in her high school classes or activities. But The Star followed Jordyn through her classes at the Kansas State School for the Blind and at home through early June, working around the periods when Jordyn was hospitalized or visiting experts out of town.
Jordyn, in fact, wants the opposite of sympathy.
“I feel as though that if this wasn’t meant to happen to me, it wouldn’t have happened,” she says.
She just wants to adapt, move forward, regain her independent life.
On Jan. 20, little more than a month after she found out she was blind, she began posting on Twitter (@jordynw55707409) and on her Instagram account (@the_real_jay_walker) with the bio: “Blonde blind and bougie — a scurvy survivor — the medical mystery you wish you were,” adding her first teaser: “If you don’t follow me you’ll go blind.”
That same day, she posted a photo of her sitting on an ottoman staring out a window with its blinds closed. “The view was so beautiful this morning,” she wrote.
She followed it with three more on the same day: a photo of her, strutting her blindness with sunglasses and cane at a doughnut rack with a caption: “Donut you wish you were me?”
Then a video: “The Blind Bandit strikes again.” Cane tapping, she pretended to steal snacks from a grocery store, then trotted, in her bumbling blindness, into a snack display across the aisle.
“Shout out to all those in the blind community,” she wrote in a third. “No really, please shout out to us were (sic) all very lost and keep running into walls and shit.”
“I think ive won the Bird Box challenge at this point,” she wrote, riffing on the Sandra Bullock movie about demons that kill anyone who sees them. She followed that with a poem:
“Roses are black . .violets are black. Everything is black. I’m blind.”
Inside the car with her sister, she lip-syncs in a video to an Eminem rap, altering his lyric. “Why be a king when you can be a (blind) God”?
The thought that all her humor might be an emotional dodge, lightening a massively weighty issue by pumping it with helium, doesn’t escape her.
“It’s kind of my way of coping,” Jordyn would say. “Some people will go to therapy, or use art or music. My escape is dark humor.
“It is unfair that at 15 I’m not going to see again. That sucks. At the same time, I’m glad it happened to me than any other person.”
Tweeted on March 3: “Today, in target, I heard a man and his wife walked past me and he reminded her to get eye drops. It made me laugh. Glad I could be of some help.”
Tweeted on March 11: “Do you think the whole ‘if I can’t see them they can’t see me’ complex still applies to me?”
Two days later, March 13, she turned 16. Part of the celebration was a photo, another blind joke: Jordyn on a bridge at the Country Club Plaza holding number “1” and “6” birthday balloons so they say “61” and a self-deprecating caption: “16 years since the greatest mistake my parents ever made.”
”We’re doing what?”
Back inside the Kansas State School for the Blind, it’s gym period, time to go outside and play a game Jordyn never imagined: blind baseball.
“We’re doing what?” Jordyn asks.
Brave as she is, she is not fearless.
“We’re turning right,” a teacher tells her on her way outside to the track. Jordyn sweeps her cane, searching for the end of a wall.
Reading, writing, walking, knowing how to choose clothes: There’s so much for her to learn.
“I feel like a cognitive toddler,” she would say.
Jordyn would rather not be at the school for the blind but knows she has to be.
Two or three days a week, her mother drives her there for a 7:55 a.m. start. At noon, she heads back to Smithville High to finish her day. Forty visually impaired students are enrolled at the school for the blind, with about 100 more using its campus programs throughout the year. A number of students, like her new friends, Rich Yamamoto, 16, and Meg Shermer, 17, have been visually impaired since birth or shortly afterward. Some students are partially sighted. A couple, like Jordyn, lost their sight suddenly, one from a stroke and another from a self-inflicted wound.
Her mornings at the school are spent learning O&M, for orientation and mobility, using auditory technologies, essentially tablets and phones that talk to her. She’s figuring out how to read and type in Braille.
“It all feels exactly the same: like bumps,” she said. “Like my forehead, like acne.”
One day she spent 30 minutes figuring out the best tactile strategy to make a peanut butter and honey sandwich. Honey is light, runnier than jelly. She couldn’t tell if she was spreading it with her knife. She eventually figured out she could squeeze blobs of honey on the four corners of the bread and then spread it to the center, checking with her fingers.
“I mean it is a little scary,” Jordyn said. “It’s just a big old adjustment. My life was going one way … and then whoosh, I can’t see anything and I’m walking into walls and I’m covered in bruises because I keep walking into everything.
“It’s just adjusting to things that you really wouldn’t think about. … Just how to cook, how to clean, how to find different cans, how not to burn myself or die when I’m cooking. I mean I wasn’t very good at cooking before, so I don’t know how this is going to be.”
Just making sure she isn’t wearing a T-shirt inside out is a challenge. She often won’t know if she’s grabbed the correct shoe until she puts it on.
“Like I never knew brushing my teeth could be so difficult,” she said. “I can’t feel the toothpaste hitting the toothbrush.”
She tries to be upbeat, feeling fortunate to have been sighted for 15 years.
“So I know what cars look like. I know what trees look like,” Jordyn said. She uses her imagination for the rest.
“I get to paint my own picture of what the world looks like,” she said. “So if I walk outside, it could be completely overcast and cloudy and foggy. I can be, ‘OK. It’s sunny,’ and no one can tell me otherwise, because who is going to tell a blind girl that she’s wrong?”
Heading to gym class, Jordyn taps her way to an automatic door. It clatters open. She feels the warm outside air, hears the traffic and birds. Although her blindness appeared as blackness at first, she more recently has also begun to perceive odd flashes of light and colors. They started as pinks, but mutated into purples and maroons.
Instead of a sign of her sight healing, Jordyn was told the colors are part of something called Charles Bonnet syndrome. The brain, abruptly lacking visual input from the eyes, fills in with colors or shapes, sometimes even hallucinations, until it figures out what’s going on. At one point, Jordyn would hallucinate shadowy spiders, along with a tiny, stop-motion green Hulk in her left eye, “like a little movie.”
Slowly, hesitantly, she makes the long walk down concrete steps to the track. With the back of her heel, she taps each riser before planting her feet.
For 11 years, Jordyn played softball and mostly liked it. But this she finds terrifying. The game is different, a version of T-ball. The batter stands at home plate, with players at each base.
Jordyn reaches for and feels the ball, red and as large as a grapefruit, on top of the tee. She swings and strikes the top of the ball, which dribbles into the center of the infield. She trots hesitantly into the darkness, a teacher helping her to each base, but mostly guided by shouts of the players who call out where they are. “First base, first base, first base!,” then “Second base, second base, second base!” and so on.
Jordyn trots toward their voices. The faster she circles the bases, the better. The team whose players run all the bases the fastest wins. Other students are laughing, having fun.
Jordyn feels anxious.
“Because I don’t know where I’m going,” she says. “I don’t know who I’m going to run into. I don’t know if there’s potholes. … There’s always the kind of mental strain of, even if I’m running on grass, part of me is like there’s stairs right in front of me. I should stop, but I can’t stop. It’s spooky. It’s scary. …
“I don’t want to do it because I’m terrified of it.”
It’s not the only thing.
Gym over, Jordyn makes her way to lunch. Her body tenses.
Inside the cafeteria, she reaches for a tray of pasta, perches the tray against her hip and, moving her cane back and forth like a metronome, finds a table of friends.
Her tray sits full of food, but she eats nothing for one crucial reason.
“I don’t want to die,” she says.
Lost in the drama of her abrupt and incurable blindness is the fact that doctors had yet to figure out what triggered the swelling that took Jordyn’s sight and nearly took her life. Every day she worries if she might again suffer another attack. She has traveled to specialists, at Children’s Mercy, at the Mayo Clinic, neither of which offered a solid answer. Over the next several weeks, her stomach will twist again, sending her to the hospital.
Unless she can be assured that everything she’s eating is safe, she eats nothing at school. Because if Jordyn has a monumental fear beyond death, it’s that the same kind of attack that stole her sight will next time rob her of her hearing.
The darkness may soon overwhelm her.