The Long Road

The Long Road

By: Karen Mellen

(Originally published in The Chicago Tribune, April 27, 1997)

Author’s Note:

The most important learning [experience] was that of getting organized to complete a big feature story. This was the first time that I had completed such a long feature story, which has a different narrative arc than a news story or an in-depth piece focused on straight news. There were two challenges: to come up with a an organizing structure for the story and organize my notes during the interview process.

In this case, in working with Prof. Harrington, I was able to come up with a process to complete the necessary interviews and research for the piece, while also determining the organizing structure for the story. In the end, I determined that a traditional chronological structure made the most sense to tell the story of how Kelly lives, and put her experience into context.

– Karen Mellen

Kelly O’Brien awakens at 7:15 in the morning, lying on her back in the same position in which she fell asleep eight hours before.

Her 5-foot-10-inch frame is stretched out, fingers pointing toward the foot of her bed, her head propped up on two firm pillows. In her field of vision is the ceiling, painted white, a glowing digital clock to her right, a Michael Jordan poster on the wall by her feet.

If she lifts her head just two inches, straining her neck and shoulder muscles, she will touch a plastic buzzer she can grasp with her lips and blow into to signal for help. She doesn’t need to do this on this morning because Jinny Cho, her PA (personal assistant), arrives on time at 7:30.

O’Brien, paralyzed from the neck down in an alcohol-related car accident 5 1/2 years ago, can begin her day.

Soon after Cho arrives, she bunches up the sleeves of O’Brien’s sweatshirt and inches them over her arms. The soft material is better than denim, which can wrinkle and leave painful sores. It takes 2 1/2 hours to get her ready for class. The 29-year-old Minooka native is a student at the University of Illinois at Urbana-Champaign

“It’s so hard knowing it will take so long,” O’Brien says. “No matter what, it takes this long.”

A small army of employees sees to it that O’Brien can study psychology at Illinois. The six people who alternate helping her write down answers to class assignments as she dictates them. They also feed and dress her, and stick notes on her computer to remind her of small tasks.

Last fall, O’Brien missed all of her classes one day because the person who was to care for her that morning overslept.

“If I just had the use of one hand, I would be able to hold a piece of pizza up to my mouth or turn on my computer,” she says. “It gets so frustrating, always having to say, `Can you get me a drink?’ `Open this book.’ `Flip this switch.'”

– – –

More than 300 students with disabilities attend Illinois. O’Brien lives in Beckwith Hall, a specially equipped dormitory that is staffed 24 hours a day. Nearly 50 years ago, the University of Illinois became a trendsetter with innovative programs to help disabled World War II veterans who wanted to attend college on the GI Bill. But life at Beckwith doesn’t come cheap: It costs more than $14,000 a year, nearly $9,000 more than other dorms.

(Her schooling is funded through a variety of sources. The Illinois Department of Rehabilitation helps pay her tuition as well as some books and educational supplies. To live at Beckwith, she turns over all but $200 of her monthly $640 Social Security disability check. That $200 pays for her phone bill, computer supplies and meals outside the cafeteria.)

Except for the buzzer and a mouthpiece that allows O’Brien to operate her computer with voice commands, her room looks like any other dorm room. Sports posters hang on the walls next to a poster of a bare-chested man, titled “The Perfect Guy.” A phone list of friends’ numbers is taped above her computer.
Despite these similarities, O’Brien’s world requires precise planning and willpower as she fights to prove that she is the same person she was before her accident.

– – –

It takes Cho an hour to wash O’Brien’s hair, dress her and brush her teeth with an electric toothbrush. The next job is moving O’Brien to the only other position she occupies: sitting in her wheelchair. The apparatus that moves her from the bed forms an upside-down L, with a metal chain hanging down from the center post. The chain attaches to both sides of a hammock, made out of strong netting. To get the netting around O’Brien, Cho must roll O’Brien’s once-athletic frame first to one side, then to the other, and pull the netting underneath her.

Cho pumps a lever and lifts O’Brien off the bed, suspending her in a sitting position until she hovers over the wheelchair. Then, slowly, Cho lowers O’Brien into the chair, careful to make sure that she is sitting up straight in the padded seat, her clothing unwrinkled beneath her. Her weight must be distributed evenly so she doesn’t get sores, which could lead to dangerous infections. A seat belt holds her firmly in place, and O’Brien’s wrists are strapped to the arms of her chair with Velcro, palms down. Her hands could be those of a hand model: perfectly manicured nails of bright pink contrasting with white, unblemished skin. She wears no jewelry, except for a large-faced watch strapped to her left wrist.

– – –

Before her accident, while attending high school in Minooka, O’Brien used to do the opposite of what anyone told her, she says. She started drinking and partying in high school. She didn’t care about school, only basketball and volleyball.

After graduation, she took a few night classes at Joliet Junior College, got married and worked as a bookkeeper. But she also still enjoyed partying.

Just before her accident, in September 1991, she waited at a bar in Joliet for hours to sober up, even sleeping in her car until 5 the next morning. But driving through rural Grundy County on Interstate Hwy. 80, O’Brien fell asleep at the wheel and lost control of her car. It flipped over three times, end over end, and landed in a ditch.

O’Brien, who wasn’t wearing a seat belt, remembers being thrown into the rear window. That broke her neck and left her paralyzed, although she didn’t know it then. At the time, suspended on top of the half-broken rear window, she waited for someone to come down the highway and find her.

“I figured I was lucky and would be all right,” O’Brien says.

– – –

These days, O’Brien spends a lot of time waiting. At 10 a.m., she has to wait for a floater (Beckwith staffers on hand to help the residents) to have 10 minutes free to feed her breakfast, holding forkfuls of sausage and scrambled eggs up to her mouth. O’Brien heads outside at 10:15 to wait for the 10:30 bus. It will take her to an 11 o’clock math class, which is five blocks away. She navigates her wheelchair, which is powered by a battery-driven motor, by using a mouthpiece and a series of sips and puffs.

At Altgeld Hall, an ancient, gray stone building, O’Brien runs her wheelchair into a square plate at ground level, striking it with her immobile foot to open the door. A series of quick sips and puffs maneuvers her chair to get through the now-open door. O’Brien goes down a narrow ramp into what she calls the dungeon, a room that looks like a storeroom where the elevator is hidden. If she is alone, O’Brien has to wait for someone to come along and push the button to summon the elevator, wait for her to get on the elevator, then press the button for the second floor, where she wants to get off.

Once in math class, O’Brien does not talk much to the other students, though a volunteer from the class will take notes for her. Sometimes, she finds it hard to relate to the younger ones.

Now a serious student, O’Brien knows that gaining independence means getting a good job that will allow her to hire people to care for her. But school also has brought a purpose to her life.

O’Brien was in the hospital and then the Rehabilitation Institute of Chicago for nine months after her accident. Once she got out, in May 1992, she picked up her old life, going out with friends who carried her into bars.

But two things happened that changed O’Brien’s outlook on life. After several months, she began to get depressed and sought help from Frank Mordini, a psychologist who had counseled her while she was at the institute. “Dr. Mordini helped again,” O’Brien says. “He made me realize I could do things like school. He help me set goals.”

Then, in the summer of 1993, O’Brien had a chance meeting in a restaurant/bar with Mary Schaefer, then director of disability services at Joliet Junior College. Schaefer urged O’Brien to think about going to school full time, and in the fall of that year, she did.

“Everything came together like it was meant to be.” O’Brien says of the encouragement she got from Mordini and Schaefer.

When O’Brien began taking classes at JJC, her mother, Joyce, who cared for her daughter full time, took notes and helped write papers. O’Brien became a leader among students with disabilities; she would wheel into the JJC president’s office to tell him about doorways that weren’t accessible to a person in a wheelchair.

For O’Brien, going to school became more than a means to an end, getting a good job; it refocused her life. Her adjustment to her life as a paralyzed person is one of the most difficult anyone has to make, psychologists say. For 23 years, she played volleyball and basketball and saw herself as an athlete. She was married at the time of her accident (she’s now divorced). In an instant, her life and identity changed completely. Victims of spinal cord injuries are usually successful only after they find something else in their lives that helps them forge an identity, psychologists say. For O’Brien, that was school.

O’Brien agrees that she has come a long way from the person she was soon after the accident. Then, lying on a hospital mattress filled with dry ice to bring down a high temperature, she wanted to die. She couldn’t watch television because she hated to see people on the screen walking and running. But during the last 5 1/2 years, she has learned to accept her life, even though she still hates being dependent on others. In fact, she believes her life now has a purpose, although it’s still unclear.

“There’s a reason why I didn’t die,” O’Brien says.

For one thing, she believes she is accomplishing more now than before her accident. She and her husband were living with her parents while the young couple saved for a new house, but their marriage was coming apart, she says. Though she took some night courses, she wasn’t on track for a degree.

Now, besides school, one of her goals is to urge people never to drink and drive. At the request of law enforcement officials, she has talked with people who have been arrested for driving under the influence, telling them, “I wish a police officer had stopped me before my accident.” She also has made presentations at some area high schools.

O’Brien wants someday to be a psychologist or a counselor, because she believes she understands what many psychologists don’t: the emotional pain a quadriplegic feels.

– – –

Between classes, O’Brien does errands. Using a speakerphone that she can dial by giving verbal commands to her computer, she calls Assembly Hall about tickets to a concert by country singer Vince Gill. It’s the first day the tickets are on sale, but she is told that the wheelchair seats are sold out.

“What, did they reserve (only) 10?” O’Brien snaps.

That leads to more phone calls to advocates for the disabled on campus. Eventually, her lobbying is successful and more tickets are set aside for disabled students, which means she and a college friend who is not handicapped can attend the concert. She also has to make a trip to the college’s Rehabilitation Center, which houses the support staff for the disabled students on campus, to find out when she will take a math test. She’ll take the test at the center because she must answer out loud, which would disturb students in her regular class.

She’ll be back at Beckwith at 5 p.m. If the food on the menu appeals to her, she may go into the cafeteria for dinner, even though she hates waiting to be fed. Later that night, she’ll study math, Spanish or psychology, depending on the schedule of her helpers.

At 10 o’clock, an evening assistant will come and reverse most of the morning ritual.

Lying in bed in the usual position, O’Brien listens to the sounds of other students talking, laughing or watching TV. Night is the worst time for her–she doesn’t have the distractions of personal assistants, teachers, friends and tutors. Sometimes, she dwells on the hardest part of her new life, the knowledge that it will be so much harder to have the family she always imagined, even though she can bear children.

Since her accident, she has dated a couple of men, one for eight months. O’Brien broke off the relationship when she moved to Champaign; it wasn’t quite right. She would like to get married again, but–like many other modern women–she believes she’ll be happy if she doesn’t. Her job will always keep her busy; her dream job is to travel the psychology circuit, giving speeches about psychology and her experiences. For now, that will wait until she completes a bachelor’s degree, which will take at least two years, and a master’s and possibly doctorate.

But still, it’s so hard knowing that her life will always be a struggle. When she is placed in bed at night, she knows she will not move until someone moves her. The morning ritual will always be a two-hour struggle. Someone will always apply her mascara, and it will never be exactly how she would do it.

Usually, O’Brien breathes deeply and meditates to fall asleep, techniques she learned in rehab. If those don’t work, she lies in bed, awake for hours, staring at the white ceiling, watching the glowing clock change minute by minute, gazing at the picture of her sports hero flying through the air. She gets tired of this life, but O’Brien no longer gets angry.

“I have control, but there are certain things I can’t do for myself,” O’Brien says. “If I’m able to take care of myself and have the job I want, my life will be complete. I’m still going to travel the world, and I’m going to have a hell of a time doing it.”

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