In 1960, when she was 10 years old, Jackie Van Duzee, of St. Paul, Minn., began to notice at recess that it was becoming harder to exercise. The last one picked for teams, she began using her mind instead of her feet to make it through the bases: keeping an eagle eye on the kid with the ball so she could steal the next base when he looked away.

Heading into seventh grade, she was diagnosed with scoliosis and fascioscapularhumeral muscular dystrophy, a progressive, degenerative muscle disease. Her disability was already noticeable to her classmates, and friends from grade school now shunned her. She walked by lifting her right leg as if to march, moving forward to back with each step and swaying side to side due to the scoliosis. In junior high, the couple of friends she had were fellow drummers in band. No one else approached her or talked to her.

“One afternoon, I was waiting for my mom to pick me up, but she was late,” says Van Duzee. “I got tired of standing, so I went into the auditorium to sit down for a while. It was dark and there were kids way down near the stage. They could tell it was me when I walked in the door, and one of them yelled, ‘Hey! There’s Chicken Breast!’ It was a name that kids called me because my back curved and my chest stuck out.”

Van Duzee spent many nights lying in bed crying, praying the torment would stop.

“It hurt so much to not have friends at school, but I knew I had the comfort of a loving family to come home to,” she says.

Alone in a Crowd
Van Duzee was studious in high school. During lunch, the cafeteria would be packed with kids at long lunch tables, yelling, laughing, horsing around. Van Duzee sat at a table by herself. Nobody would join her or let her sit with them. She ate lunch alone her entire freshman year.

The high school had three floors, no elevators, and Van Duzee fell down many times on the wide, crowded stairways or in the hallways after being bumped or tripped.

“Once I was going downstairs and fell and landed on my knees and my books went flying,” she says. “The stairs were filled with kids and I looked up pleadingly for help, but everybody kept on going. I carefully picked up my books, limped to the bathroom and put cold paper towels on my knees.”

A gifted artist, Van Duzee went to vocational school for commercial art. Unlike high school, in this setting she made friends easily. “It was a whole new world, you didn’t have that peer pressure.”

After graduation, she got a job proofreading advertising copy at a firm in downtown St. Paul. There she met the person who would become her lifelong, constant friend and soul mate, Anne Froehle.

Drawing Lines in the Sand
“I was 22 and Anne was 18 when she started on-the-job training,” Van Duzee says. “She was just a really sweet person.”

The girls got to know each other as they worked with their drawing tables butted up against each other’s. They’d head for McDonald’s after work or drive around Lake Phalen in Van Duzee’s car. Once, Van Duzee asked Froehle if she wanted to go to a concert featuring a classical guitarist.

“She said, ‘I don’t do things like that!'” Van Duzee says. “Another time I asked if she’d like to go out for a drink. She was shocked and said, ‘I don’t drink!’ I said, ‘I meant for a Coke.'”

Van Duzee knew there was a friendship brewing; the only problem was Froehle talked constantly about her church and faith. It reached a breaking point one morning and Van Duzee told Froehle, “I’m tired of you cramming this Bible stuff down my throat! We’re done!”

That night, while she lay in bed gazing out her window at the stars, Van Duzee contemplated the meaning of friendship and of her life.

“I was crushed about what happened and I just lay there thinking about life, about our existence, about how I got here and where I was going,” Van Duzee says. “And I just said, ‘God, you know how much I appreciate friendships and I blew it with this one. If you want us to be friends again, you’re going to have to help because I don’t know how to do it.'”

Gradually, Van Duzee warmed up to Froehle’s worldview and started driving her to church. By the late 1970s, both girls left their jobs; Froehle married her college sweetheart, Gene Hartsock, and moved into a house across the street from Van Duzee and her family. By that time, it was becoming harder for Van Duzee to wash her hair. Her parents were both disabled and couldn’t help, so Hartsock happily took on the task.

In 1979, Van Duzee and her family moved to a new home where months later, her father died; her mother died in 1981. Alone, she was unable to cook, clean and care for herself.

“I’d make supper, bring it into my bedroom and lie across my bed to eat,” Van Duzee says. “By then I was so tired I could barely eat. I just couldn’t do this by myself.”

In 1982, after a few roommates didn’t work out, Van Duzee asked Hartsock if she could help with her care. It just happened that the Hartsocks, who now had two sons, were in the process of losing their own home, so they agreed to move in with Van Duzee.

The house was small – two bedrooms, a basement, a finished attic – and now there were three adults, a 5-year-old and a baby. There were a lot of shoes lying around for Van Duzee to trip over.

“It was a matter of working out each other’s needs,” she says. “You have to work out little details, get to know what buttons you can push safely and what buttons you can’t push. It’s like a marriage.”

By now, Van Duzee was using a wheelchair full time and the boys benefited from having a dad and two stay-at-home moms. While Hartsock took on all the household duties, Van Duzee taught art to both boys, helped with homework and home-schooled the younger son. Together the women cooked and baked and created a vegetable and flower garden: Van Duzee planned and ordered the seeds; Hartsock planted and cultivated.

By 1994, Van Duzee’s scoliosis had become so severe she was unable to breathe properly and was barely able to swallow food. She was told a surgery to straighten her spine would either help her continue to live or kill her. Although her health and body were fragile, Van Duzee made the decision to have the surgery. Her doctor told her to get at least six pints of blood.

Now flush with friends from vocational school, church and her neighborhood, she asked everyone she knew with a matching blood type to donate blood. She went into surgery with 26 pints. The surgery lasted 11 hours while family, friends and Hartsock held vigil.

“She bled out twice,” her doctor told those waiting. “We needed every drop of blood she raised. It was close.”

Soul Mates
While Van Duzee was in rehab for six months, Hartsock felt the weight of loneliness.

“It was so quiet, I felt like a bunch of bones rattling around the house all day,” Hartsock recalls. “I’d lie on her bed and close my eyes and try to feel her there. I missed her so much.”

The surgery helped Van Duzee to breathe and eat better, although at times she could sit up for only a couple hours a day. Hartsock – who has fatigue, a bad back and repetitive stress syndrome – is now Van Duzee’s full-time, unpaid caregiver. Hartsock says her life is to help others, who now include her 1-year-old grandchild.

Besides their faith, Van Duzee and Hartsock also share gardening tasks, cooking and baking. Like sisters, they snap at each other one minute and protect each other like linebackers the next. Hartsock is attentively quiet, nurturing and demure; Van Duzee has deep convictions, is vocal, outgoing, and always the center of attention. Van Duzee is methodical and analytical; Hartsock dives into a task and is forgetful. They are a union of opposites.

“These aren’t necessarily faults,” Van Duzee says. “It’s understanding how the other person’s mind and body work. What I can’t do, she can, and the details she can’t figure out, I do. We complete each other.”

Snapshots

Making a Lifelong Friend 
New Mobility editor Tim Gilmer left his small farm town of Wasco, Calif., and entered college in 1963 at University of California, Los Angeles. There he joined a fraternity, where instant friends are guaranteed, as the entire pledge class goes through “hell week,” an intense bonding experience. But in 1965, after he was paralyzed in a plane crash that also killed a good friend, the pilot, everything changed, especially the way others saw him.

In high school, Gilmer had lettered in three sports and was student body president. Everybody in Wasco knew about the plane crash, and the stigma of sudden disability took over. “I was like a ghost,” Gilmer says. “People would speak to me about what used to be, as if my life had ended.”

Gilmer wasn’t ready to go forward – he hadn’t accepted the reality of paralysis, but he knew he couldn’t stay in the small town that he’d outgrown. Eight months after injury, he returned to college to live in the fraternity house. “There were about 40 guys masquerading as men,” he says. “Out of those, only a handful were aware of my needs and seemed to care.” But one brother from an earlier pledge class became a lifelong friend.

“I was aware of Tim before his injury because he has a great personality and sense of humor and is a very creative guy, but we were just acquaintances,” says Dennis Cooper, of Ashland, Ore. “The impetus of our fraternity was that we supported each other. But it’s one thing to say ‘I’m there for you,’ and it’s another thing to really reach out.”

The three-story fraternity house was inaccessible. Gilmer’s dad organized the boys to ramp the house and build a bench in the downstairs shower. “It was something we all took pride in,” says Cooper. “I decided I could do more for Tim, maybe make his challenges easier. I could be a friend,” he adds. “But when I look back … I was the one who grew from it.”

Gilmer and Cooper eventually moved off-campus to share an apartment. “He’d ride on the back of my chair when we’d go out for pizza and beer, maybe shoot some pool. Our conversations took interesting twists. One moment we’d be cracking jokes and the next we’d be philosophizing. We were both former jocks who loved music. I respected Den for his intelligence and discipline — he graduated Phi Beta Kappa in a perpetual party atmosphere.”

“Tim once made a comment to me,” says Cooper. “The essence of it was, ‘You’re restricted by your physicality and I have freedom to explore my mind.'”

“We live about four hours away now, at opposite ends of Oregon, and only see each other about once a year,” Gilmer says. “But it’s the kind of friendship where you pick up the phone and you haven’t missed a beat.”

Finding Friends Where They Are
For Wayne Koch, a 56-year-old C5-6 quad who lives in Lancaster, Pa., making friends is easy, and he considers his personal care attendant and her family as good friends he can always count on. But, he says, after his accident, he found out who his true friends were.

Koch and his first wife hung out with a group of people whose friendships were based on a fast lifestyle. That part of his life and those connections ended the day he was injured in a car accident 20 years ago. Other friendships the couple had gradually ceased to exist, and his wife left him about a year later. “I think it was because some people don’t know how to take the changes or what to expect,” he says. “They don’t know how to talk to you anymore. They feel uncomfortable.”

After his injury, Koch worked from his home and mostly made friends with the people coming to his home to provide services. They’d also introduce him to others who he’d befriend. Because of this and the fact that he’s now an advocate for people with disabilities, he says his friends are more varied.

“I’ve made friends with people I’d never come across before my accident,” he says. “It’s a wider range of social and educational levels than my earlier group of friends.”

He lists as friends a woman who lived on the streets since she was 14, acquaintances who are Pagans, and his best friend, Nelson, who he met at a winemaking party and who was raised a Mennonite and is gay. He has also made close friends with his attendant of 20 years, Cheryl, and her family; her daughter was raised in his home while her mom worked.

“She slept right here in her cradle while her mom worked,” he says. “Cheryl’s husband would come for beers and watch the tube with me if the races were on.” But it’s Nelson he counts on for anything. Once Nelson was once knee-deep in raw sewage in Koch’s basement after a back-up.

“To make friends, you have to listen,” Koch says. “Listen to the people around you and find out what interests them. Do a little research in those areas and be able to at least converse a bit about the subject. Knowing what interests them goes a long way.”

Disappearing Friends
A wheelchair user since she was 18, Erin Hale [not her real name] had a bad experience this summer when one of her friends since 1992, Beth, stood her up for a party. It wasn’t the first time Beth did this and Hale, who has muscular dystrophy, is pretty certain it’s because of her disability.

“My friend had a 4th of July party, invited me in person and sent me an evite,” says the Cambridge, Mass., single. “I told her ‘Yes, if I have a ride.’ She used to drive me everywhere, but this time she blew me off completely.”

Beth then called Hale about five days after the party to tell her how much fun they had. When Hale said she was upset she wasn’t there, Beth said, “Everyone was going in and out all day and night because the band was outside. You wouldn’t have had fun anyway.”

Hale says her friend’s apartment has stairs, which in the past, Beth has helped her with, even making her bathroom accessible. There were about 85 people at the party — someone would have helped her — she just needed a ride. “I couldn’t tell you why she didn’t want me there,” Hale says. “I think I’m not easy. I can’t just get up and go and not think about it. There’s effort involved, and I don’t think she wants to put in the effort.”

Hale says she could have accepted the excuse from her friend that people would be drinking and it wouldn’t be safe to help her or that the drive back and forth was too much, but her friend didn’t offer that. Hale didn’t ask her friend why she blew her off — she just didn’t want to get into it with her.

“I should be able to say, ‘I was really hurt, I don’t expect you to come get me, but you didn’t even offer,'” she says. “At this point I don’t think her friendship is worth it. Beth tells everyone I’m her best friend, but I don’t think she’s a good enough friend to invest any emotion.”

Being Selective About Friends
Injured at the C5-6-7 level in 1988 while downhill ski racing at age 42, Mike Collins, executive director of the National Council on Disability, in Arlington, Va., says he put some friendships on hold after his accident. He also rekindled old friendships when friends from his past showed up to help during his recovery.

Collins was very athletic, playing organized sports in high school and college, continuing with sports after graduating, participating in triathlons, running, rowing and ski races.

“When you get injured, you drop some friends because you’re not where they are,” he explains. “There were some friends that I knew were going to be overly concerned, and I didn’t need the drama. I needed to spend my time and energy on recovering and healing.”

Collins says certain friends, acquaintances, even family members, need to be shepherded through the healing process. He says you can see it on their faces when they enter a room. “I was athletically robust,” he says. “Then in rehab, I got a couple infections, lost my tan and about 30 pounds and became a shadow of who I was.”

Collins also notes that there were people who’d heard about his injury and wanted to get back in touch with him, saying, “They wanted to get involved and were very helpful.”

After his injury, although he wasn’t out competing on weekends anymore, he continued to announce events, so he still hung with the circle of friends on weekends.

“A lot of people become victims of their own attitudes. They’re afraid to reach out, and they think disability defines them,” Collins says. “We control the level of friendships we have. If you want someone to consider you as a friend, to spend time with you, you make that effort. Put them on your e-mail list, send them cards, call them once in while.”