In the next room over, Demi Eckhoff’s mom is on the phone. She’s trying to persuade the state of Alabama to let her daughter go to college.
It’s not a question of Demi’s grades or her determination. Her mind is sharp, and her will is strong. But sometimes it’s easier to see what she doesn’t have.
State officials suggest another plan. What if her parents got her a laptop? That way she could stay at home and play games. Maybe she could take some online classes.
But college? Not for someone like Demi.
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It wasn’t the first time Demi would have to defy what others defined for her. Doctors thought she wouldn’t live through her first winter. Medicaid officials saw her education as an accessory, not a necessity. Demi had spent months — maybe even her whole life — convincing her parents that she could handle college.
Now she’d have to prove it to the state.
She’s easy to overlook when you see her chair before you see the person in it.
Treatment search begins
Eloise saw what everyone else couldn’t. Or wouldn’t.
“She just does not feel right,” she said as she cradled her 6-week-old granddaughter, rocking Demi back and forth.
She poked and prodded the baby. She couldn’t diagnose what was wrong, but the baby was limp. Floppy. After raising eight children of her own, Eloise knew how a baby should feel. This wasn’t it.
At the time, Demi’s mother, Kimm, rolled her eyes. It was ridiculous to critique a brand-new baby, she thought. Besides, there wasn’t time to dwell on what seemed like nothing when she had a 3-year-old to take care of, too.
Now, of course, Kimm wishes she had taken the signs more seriously.
It wasn’t just that Demi was limp. She always fell asleep in the middle of nursing. And Kimm had to sleep with her head on Demi’s crib because if she were more than a few inches away, she wouldn’t be able to hear her daughter’s frail cry. And Demi never seemed to physically react to anything: the feeling of bathwater, or the Moro reflex test. Nothing.
A muscle biopsy revealed the muscular dystrophy a few weeks later. More time would pass before doctors realized she was the first to be diagnosed with her specific kind of disorder: merosin-deficient congenital muscular dystrophy. She had limited muscle movement. Arms crumpled against her chest. Legs drooped over the chair in which she’d spend her life. Her neck would never able to turn from side to side.
Her life expectancy was always in question.
The diagnosis was the start of a years-long search for treatments, cures and clues.
Kimm never completed the dual degree she was studying for — she earned her MBA, but never her law degree. Demi was her new degree. She jetted around the country searching for best practices, she called occupational therapists in England and Japan. She took Demi to Jamaica to try non-traditional medicine.
No one seemed to know how to help her daughter, so she was going to find a way.
Becoming an extrovert
In the front of the lecture hall, Demi’s professor fiddles with a computer monitor.
Students open their laptops almost simultaneously, bringing the dark room to life with the flicker of their computer screens. They take note of today’s topic: best practices for nutrition care during pregnancy.
Sitting in the last row, Demi, who studies nutrition in UNC-Chapel Hill’s school of public health, faces forward but angles her eyes to the right, her arms bent against her mint green T-shirt. She’s trying to get her aide’s attention.
“Can I have my laptop?” she asks.
Her aide, Geneva, climbs out of her seat and unzips the bulging purple backpack always strapped around the handles of Demi’s chair.
She puts the thin silver computer on Demi’s lap, opening it and arranging Demi’s arms to rest near the mouse pad. She lifts Demi’s right wrist and slides it under her hand.
Demi clicks her computer mouse rhythmically, her eyes darting with her cursor all over her computer screen, though she never moves the mouse from the lower right corner.
Email, iMessage, PowerPoint, email, calculator, schedule, PowerPoint.
She uses an on-screen keyboard to type, clicking whatever letters she needs with her cursor. It takes a while to spell out long sentences, but like most millennials, she’s a fast typer.
“Can we shower tonight?” she asks her evening aide in a blue message bubble. She closes out of her messages and glances over to Geneva. “Can you raise your hand?”
Demi asks about the calculations her professor told the class to complete, though she already finished them. The professor answers while a student next to Demi scrolls through pictures of promising wide receivers for his fantasy football league.
The rest of the room is quiet as the students start their calculations. Demi waits.
Her phone slides off her lap, a small crash in the silence. Geneva reaches behind Demi, feeling around for the phone, and returns it to her lap, this time angling it under Demi’s left hand to keep it in place.
Moments later, the same thing happens, this time with the red mouse. Geneva retrieves it.
Demi’s hands stretch only a few inches out to the control panel on her motorized chair. At 25, she’s used to it. The function she has now is the function she’s always had. She’s needed aides throughout her life to do what her hands and feet can’t. So far, she’s had more than 100, paid for with various waivers covered by Medicaid. Her mother was her main caretaker during her younger years, before Demi moved to Chapel Hill to pursue her master’s in public health.
An introvert at heart, Demi has been forced into an extroverted life because of the 24/7 companionship. She needs their hands to jab her with medicine and fluids; she needs their feet to help her run errands and open the door. She’s mastered the art of fitting their schedules into her own — a daunting endeavor. It takes a while, sometimes years, for them to fully know her, and a while for her to fully know them.
Some have been with her since she moved to North Carolina last October, most of them college students, too. The newer ones still fall for her schemes, like when she hides fake worms in her sheets because she knows they’ll make them jump.
Her aides do the little things, like her makeup and hair, and they give her what she couldn’t live without: her nightly medicine, forkfuls of food, baths. They’re her onion-choppers and sauce-stirrers, her phone-answerers and texters. They know the songs on the radio she’d rather skip. They’re the arms that scoop her out of bed in the morning, and the friends who laugh and pour her another when she wants one more shot of tequila. They endure, and maybe even enjoy, whatever trash-TV she insists on watching. Right now, the Beverly Hills and Orange County housewives are her favorites.
They feel protective frustration when, at the grocery store or on the way to school, people look like they feel sorry for her.
They love her like they love themselves.
How, not if
“When are you going to start living?”
Kimm’s oldest daughter, Austin, was 17. The two of them were sitting in a hotel room, snowed in on a trip to visit colleges 11 years ago.
“We spend our whole life waiting for Demi to die,” Austin continued. “So when are you going to start living?”
Kimm had tried to raise her three daughters normally and equally. But life was being lived in future plans. When Demi dies, we’ll go to Europe. When Demi dies, we’ll go to Disney World.
It was a turning point for Kimm, the two of them talking in that hotel room. Her daughter was right: Demi might die soon. But anyone could die at any moment. Austin. Her youngest, Ainsley. Her husband, Devin. Herself. She’d seen Demi’s life as a death sentence, but Austin reminded her of the opposite: Death is a life sentence. Knowing it’s coming is an excuse to live more fully.
The best way she could help Demi would be by letting her live as largely as she dreamed.
So by the time Demi told her mother about her decision to move to North Carolina, Kimm knew it would be a question of how, not if. She took Demi to tour UNC-Chapel Hill. She learned a new state’s set of rules, making the phone calls Demi doesn’t know she made, all to figure out how her daughter was going to live without her nearby.
She worked to help the baby doctors said wouldn’t make it past winter earn her master’s degree.
Demi never really thought of her disability as being much of a setback. Everyone has obstacles, she said. When others dwelt on it, she’d leverage it with a laugh, egging on her classmates to pull silly pranks, but never getting caught. No one suspects the kid in the chair.
Sometimes adults question her — What do you mean you can ski, or that you did ballet and horseback riding? — and her peers are quick to stick up for her.
When she was little and people stared, she’d stick out her tongue. Now, she’ll stop and talk to them with a smile. They end up seeing more similarities than differences.
Pebbles in the road
Sometimes Demi still thinks about the state’s suggestion to get a laptop.
Demi didn’t understand the gravity of the situation then, the pointedness of their assumptions. Looking back, it hurts more now.
Still, she always pressed on. The state came around. She finished undergrad at the University of Alabama with a bachelor’s in nutrition, earning a 4.1 GPA.
She does use a laptop of course, but not to stay home and play games. She needs it to study for her master’s.
The laptop, the looks, the errors people make in assuming that her physical capabilities are a reflection of her mental ones.
“I just see them as little pebbles in the road, and I kick them out of the way with my shoe,” she said. “Or I have my aide kick it out of the way, and I keep going.”
Demi’s not sure what she’ll do once she gets her master’s, but she doesn’t plan to stop. Maybe she’ll teach, maybe she’ll study more. She’s 95-percent sure she’ll go on to get her doctorate. She’s 100-percent sure that, first, she’s going to take a long nap.
And if — when — she’s told she can’t, she’ll keep working until she proves them wrong.
She’ll belt the lyrics to her favorite musical, “Wicked.” She’ll admit sheepishly that, yes, her favorite food is butter despite her degree in nutrition, and ask an aide to get out her favorite churner. She’ll laugh as she dyes her hair purple, joking that muscular dystrophy is the least of her problems.
It’s easy to forget the chair once you know who’s in it.
Kiana Cole is a senior at UNC-Chapel Hill and former Observer intern. She reported this story through the UNC School of Media and Journalism’s Media Hub, a class made of student journalists reporting stories for publication in local, state and national media.