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 three of four)
Some days the darkness has weight.
It presses down on Jordyn Walker.
Only four months prior, at age 15, she was struck blind by a cataclysmic immune reaction that no one had yet to diagnose. Swelling in her face strangled her optic nerves of oxygen. Pressure behind her eyes caused them to bleed and bulge from their sockets, forcing her to literally feel her way in the dark as she redefines herself.
When the attack hit in December, Jordyn’s instinct was to attack back with humor, certain that it could buoy her. Now, the reality that her blindness is forever has settled in, solid and dense.
On this April morning, she sits inside a small office at the Kansas State School for the Blind. Social worker Ron Wilson, with braids and a quiet manner, faces her. A copier rattles nearby.
Jordyn shares everything, pouring out the emotional load of all that has happened since she went blind: the deep wound of being abandoned by a close friend, mounting tensions at home, the guilt she feels over money and over her sister’s post-traumatic stress, conflicts with her family, conflicts even with her own body, which has ballooned to near 200 pounds because of her medications.
The mystery of her illness looms over her. No one has ever been able to diagnose it. Two years ago in North Carolina, the explosive swelling nearly killed her. In December, it stole her sight forever.
How bad will the damage be if it strikes again? Not a day goes by that she doesn’t live with uncertainty, wondering if her body will turn on her in ways large or small.
“I feel like shit,” she tells Wilson outright. Her voice pitches with frustration. “I feel fat.” Her hair, she tells him, has been falling out in gobs.
“I literally was brushing my hair out Friday night,” she continues. “It looked like a cat had thrown up in my hand. I walked into my mom’s room. I said, ‘Open your hand.’ She opened it. I said, ‘That’s literally what I’ve lost in the last three seconds.’ And I started crying.”
She called her sister Samantha that night and cried for five more hours.
“And I don’t cry,” Jordyn tells Wilson. “I don’t cry. Water never comes out of my face, but I was crying.”
Samantha could feel her sister’s torment.
“She feels betrayed by her own body. ‘Why is my body killing me?’” Samantha, 21, would say. “I think she sometimes feels like a burden and waste of space and guilty that everyone else’s lives have changed so much. I try to make sure she knows that I love her and she is not a burden. She could have died that day.”
But Jordyn feels guilty, nonetheless, thinking that because of her, others are suffering.
On the night Jordyn went blind, Samantha stood helpless at her sister’s hospital bedside as blood streamed from her eyes and Jordyn called to her, “Sami, help me!”
“I feel traumatized by it,” Samantha says. She’s now seeking counseling. Her nightmares rise as a jumble of powerlessness.
“She can’t see,” Samantha explains of one formless dream. “Someone was mean to her. We weren’t doing anything about it.”
While Jordyn sleeps in her Smithville bedroom, her mom, Kendyll Walker, will sometimes break into tears. For weeks in the beginning, she slept on the floor near Jordyn’s bed, curled into a ball, riddled with worry.
“I was throwing up every day,” Kendyll would say. Guilt gnaws at her.
The night before Jordyn lost her sight, she had asked her mom if they could drive around to view Christmas lights. They didn’t go.
“I still regret that night,” Kendyll says.
Kendyll’s fiance, Shannon Loerzel (Jordyn calls him her stepdad), is a self-described optimist. He is a Federal Express worker who has tried to impress on the family that these hard times “won’t be our forever normal.” But he also concedes, “Everything in the house is different.”
The walls at times vibrate with tension, Jordyn says, along with arguments and worries about money and medical bills. To help Jordyn, Kendyll quit a new job at a data company. Shannon, meantime, has three biological children of his own at or nearing college age.
A GoFundMe page raised more than $42,000 for Jordyn. But the family wants to save that for her future needs, because no one knows what they might be.
Kendyll applied for Social Security disability for Jordyn. But they have been turned down flat. Kendyll’s discussions with her ex-husband, Keith, have grown strained. At an upcoming doctor’s appointment, they would have a massive blowup over Jordyn’s care.
Shannon, meantime, has taken on a second job at Hy-Vee.
“He used to be so lighthearted,” Kendyll says. More recently, she says, and since he stopped smoking, he has turned sullen, irritable, flopping himself on the couch at night in exhaustion.
“It’s just frustrating”
Wilson lets Jordyn’s emotions lead him.
“Did you feel helpless and vulnerable?” the social worker asks.
“Insecure,” she says.
After she went blind, her greatest desire was simply to return to some version of normalcy. But this new normal is tough.
Jordyn tries to be a good sport, willing to laugh at herself and mock her own misery to keep others from pitying her or, perhaps even more, to keep others from feeling bad. But she is far from impervious to pain, or to family insensitivity or to “the jokes that aren’t really jokes.”
There was the time before her 16th birthday in March, she tells Wilson.
“Like my grandma was like, ‘I don’t know what to get you for your birthday because you’re blind.’ I was like, ‘You could literally get me anything you want,’” Jordyn says. “And my (step)dad was yelling down to the basement, ‘Hey, who’s parked out front? Could you move it? We have a blind kid here!’ I’m like, ‘You don’t need to say that. Why? Why do you feel the need? Don’t do that. It kind of just makes me feel bad.’”
She vents. The amount she must learn seems massive.
Technologies to help the blind abound.
“I suck at technology,” she says. “And I don’t know why people who are making YouTube videos for the visually impaired are like, ‘Well, if you see this on the screen. …’ Well, actually, I don’t! … It’s angering.”
She worries about what will happen in the future. At home, she can’t do her laundry without help finding the buttons. She can’t work an oven yet.
It is one matter to tap her way around the halls of the School for the Blind, but what will happen once she’s in the larger world, stepping off a curb?
“What if I’m alone in my apartment when I’m older and I drop a glass plate and I don’t have any shoes on? What do I do? Do I call the police? Do I call my neighbor? Do I call my mother?
“I can get around my house OK, but what if I’m in a new city and I don’t know where I’m going?”
Lacking sight has given her troubling insights into how people with disabilities are viewed. Her realization is that to a great many people, they are not viewed at all. They are invisible.
She visited Samantha in Springfield, she tells Wilson. They went to McDonald’s.
“I was standing in line and some guy tried to scoot in between me and the person in front of me and literally knocked me over,” she says. “If I had not been standing next to my mom, I would have fallen. ‘Bud, you see the cane is out? You see I’m wearing sunglasses indoors.’ It wasn’t even just him. There were so many people trying to scoot in between that space. I just put my cane out into space where people were walking. It didn’t help.
“I’m like, ‘Bro, you think this is a toy?’”
Wilson aims for perspective.
“You feel like you’ve become more aware of how people with disabilities are treated or ignored?” Wilson asks.
Jordyn concedes that when she was sighted, she was probably as oblivious as anyone.
“I’d like to say I wasn’t, but I definitely was,” she says. “It’s just frustrating. You’d think where a big portion of the population has a disability that the world would be a little more understanding.”
“I’ve just been in a real bad rut”
Perhaps as painful a loss as any is one that she never expected: a friend.
Her truest friends, like McKenna Hill, a senior who became close to Jordyn through their work in journalism class, have been there for her from the moment she went blind.
“She came to visit me,” Jordyn recalls of her time in the hospital. In classes at Smithville High, Jordyn can identify McKenna from the clean fragrance of her shampoo.
“I was like, ‘Hey, McKenna.’ She was like, ‘What’s up?’ I said, ‘I’m blind now.’ She’s like, ‘OK. You don’t need it.’ Our friendship has continued literally like normal.”
But that hasn’t been the case with everyone. Friendships can change — out of guilt, out of awkwardness, out of lack of shared experiences — when someone loses vision, Wilson notes.
“After this, I’ve lost Tier 1 friends,” Jordyn shares. “I’ve lost people who don’t, like, care enough. I lost my best friend. My best friend of three years, after this happened, did not talk to me.”
The fact rips at her. She went blind on Dec. 12 and was officially told on the 18th. That friend visited once with his family when Jordyn was still sedated and didn’t remember the visit. After that, he didn’t call or text until February.
“Did it hurt your feelings?” Wilson asks.
“Absolutely,” Jordyn says. “I was frickin’ pissed.”
“Pissed is one thing,” Wilson says. “Hurt is a different thing. Were you sad about the way he conducted himself?”
Angry, frustrated and, yes, sad, Jordyn responds. “Because, like, I had such high hopes for this friendship,” she says. “And he just basically punched me in the face.”
She begins to probe deeper into her loss, then pulls back. Wilson tries to encourage her.
“I don’t know if I’m sounding like a bitch,” Jordyn says. “I’m sorry if I am. … I don’t know. I’ve just been in a real bad rut the last couple of weeks where I just don’t want to do anything. I just don’t want to speak to anybody.
“I know I have to, so I’ll do it. But I just hate being here, because I wasn’t here a year ago. I wasn’t here six months ago. I wasn’t here two months ago. My mom keeps telling me, ‘Oh, it’s a new thing. You’ll get used to it.’ I’m like, ‘I don’t want to get used to it.
“I want it to be over.’”
At four months blind, the distance between who Jordyn was and who she wants to be seems so far away.
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.