By Erica Jacques with Alex Ghenis
Friends & Spinal Cord Injury is an important element of post discharge that may unfortunately fall by the wayside.
During my six years as an occupational therapist in a rehab hospital, I witnessed more life-changing events than most people do in a lifetime. When it came to addressing the needs of people who were recovering after a spinal cord injury, I felt like we therapists covered all of the bases.
We taught them how to get in and out of a car. We taught them how to put on usual clothes. How to navigate a wheelchair through a kitchen and into a bathroom. We took them to malls and movie theatres, teaching them to open the doors and carry their own popcorn. We even had a social worker who specialized in post-SCI sexuality. Rarely, however, did we address friendship.
Often young people with SCI made friends with one another during their stays. But when they came back to visit and I asked about their “rehab buddies,” I got only a shrug. What happened to these friendships after the hospital stay? I always imagined the people I worked with going home and returning to their former social life, but never considered the logistics. It got me thinking: Over time, did they become isolated from their former social crowd? Did they seek out others in wheelchairs? Did they go out of their way not to?
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Like other traumatic life events — divorce, the death of a close family member — SCI can teach you who your real friends are. Ann, who was paralyzed in a diving accident at the age of 14, found this out the hard way. When asked who stuck around, she responded, “no one — they all left.” She made some new friends in rehab and kept up with them through email and Facebook. It wasn’t until she attended a camp for teens with disabilities where Ann met her first post-SCI friend, out of the rehab setting. “She was blind, and she loved [the band] Oasis,” she said. “The rest is history. She saw through to the real me, not my chair.” For a while they were inseparable. Like many teenage friends, however, they grew apart over time and rarely talk today.
Ben, who was also injured in a diving accident, learned that his best friend was truly his best friend. They were 16. Ben said of Ian: “My friendship with him intensified, whereas other friendships withered.” Ian learned to transfer and catheterize Ben. “The cast of characters changed and grew smaller,” said Ben, “but the friendships around me grew stronger.” As his interests and activities changed post-SCI, so did his circle of friends, but this didn’t seem to affect Ben. “People that stuck by me were ultimately no better or worse than the people who didn’t.” Sometimes Ben found that he was the one sticking around too long. “It’s scary to let go because you get both physical and emotional security from a relationship,” he said. “That means that I’ve held on to some relationships much longer than I should have.”
Dax, a musician who was injured nearly ten years ago, learned that his musician friends were in it for the long haul. They rallied around him post-SCI, organizing benefits to raise money for his expensive medical equipment. “Some people realize that they almost lost you and want to be closer as best they can,” he said. While he remained close with the music crowd, he lost touch with many close friends in the gay community, most of whom had been regulars at a particular bar for decades. “I found it difficult to hang out with those of our friends outside of that scene,” he said. “I wasn’t able to go out as often because my caregivers couldn’t stay out so late. And I found it difficult to hang out with those bar friends outside of that scene.”
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Cover girls Jessica Larsen and Valentine Sargent know all about the challenges a spinal cord injury can pose, but they haven’t let them get in the way of their friendship. The two teens from Mesa, Ariz., have known each other since before Larsen, 15, was paralyzed in 2008, but grew closer following her injury. Sargent, 13, was heavily involved in fundraising to help Larsen and dedicated herself to supporting Larsen as she transitioned from rehab back to her everyday life.
“It was kind of hard because I lost a lot of my friends,” says Larsen. “I had to pick out the real friends from the friends that just wanted me because I was popular.”
“Now, we’re very close,” said Sargent. “We’re probably closer than most high school friends.”
With a busy schedule that includes basketball, handcycling, high school and college classes, finding time to just hang out isn’t always easy, but Larsen and Sargent find ways. They’ve also learned to tune out the rumors and noise that often break up high school friendships.
“There are a lot of stereotypes with people in wheelchairs that can be hard to get past,” said Larsen. “Some people don’t want to talk to you because they either think you’re depressed or you have a mental disability or something. You have to talk to them first, and they have to see that you’re in their range of ‘normal.’”
Sargent knows that friends can play a key role in helping people with spinal cord injuries deal with those kinds of obstacles. “You should always stick by your friend and always support them,” says Sargent. “Just ignore everyone who spreads rumors and says stuff that’s not true.”
These stories surprised me. I knew that some people get abandoned. It was always heartbreaking. Like the family who stopped returning our calls from rehab, essentially leaving their newly-injured daughter stranded. And the countless boyfriends and girlfriends who would gradually visit less and less, and eventually would never come back. But those are the blatant jerks. Others are less obvious, they simply go on living without you.
Jill’s injury occurred over time from adolescence into young adulthood. A systemic disease caused several spine fractures and a hip fracture, permanently landing her in a wheelchair. Jill’s friends didn’t go anywhere. “I wouldn’t be friends with someone who would leave me just because of my chair,” she said. She hasn’t had trouble making friends since, either. “Most of my friends I’ve met since then often forget I’m in a wheelchair,” she said, “which is a double edged sword.”
Able-bodied friends: They stick around, but they don’t always get it. “Sometimes,” said Ann of her pals, “they unknowingly leave you out of things.” Jill echoed this sentiment. “On the one hand, I’m happy they see me like they see anyone else,” she said. “But on the other, it doesn’t help that they don’t think about the obvious. Like, I can’t climb stairs.”
On the other side, there are those would-be friends who turn you off by going overboard. They want you to know they are aware of your wheelchair, going to great lengths to let you know it doesn’t bother them. “Sometimes people just try to be too politically correct,” said Ann. “It can be fun to teach them about disabled things. And they can physically help you. But sometimes, it’s just nice not to have to think about disability stuff for a little while.”
“I get called ‘inspiring’ a lot,” said Jill, “which I guess is a good thing. But to me I’m just surviving.” Jill is used to being a spectacle, with her light-up power-assist wheels. People often ask about her chair, which can bother some of her able-bodied friends. “They have a lot of trouble with the staring. They get really upset about every injustice, most of which I’m used to. But you have to pick your battles.” To Jill, the people who are too politically correct or even plain rude are not the enemy. “Those are just people who need to be educated.”
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After hearing all of these stories, I wondered why these four individuals don’t have more friends who are in wheelchairs: friends who are used to the same challenges and annoyances, friends who’ve had similar experiences. Wouldn’t that save a lot of hassles? Jill’s response made me laugh out loud: “People in wheelchairs can also be just as annoying or as much of a jerk as anyone else,” she said. “Some I’ve met just don’t have very good social skills.” Other than being in a wheelchair and having that to talk about, Jill said she just hasn’t met many that share the same interests. “I also don’t like it when people make their disability their identity. They do things like refer to people who aren’t in wheelchairs as ‘temporarily abled people.’”
“I wouldn’t wish my struggles on anyone,” she continued, “but I don’t want to be friends with people who wallow in self-pity or look down on others, whether they’re sitting or standing. I just want good friends.”
Jill has several acquaintances with SCI, most of whom she has met in her apartment building. She does interact with them, and likes to learn new tips and tricks or talk about new pieces of equipment or medical technologies. For the most part, however, that’s where the conversation ends.
Of the four, Ann has the most friends in wheelchairs. “They understand completely, and they don’t judge,” she said. “Other people don’t always get where you are coming from when you complain about disability stuff.” As a con, however, they can also assume a lot about you based on their own experiences. Sometimes they just come on too strong, which is off-putting. “They can be too buddy-buddy just because you went through the same thing,” Ann added.
After his injury, Dax met someone in his hometown with an SCI. They hang out all the time, hitting the town and even helping out with support groups.
Dax had some of the best advice for dealing with all types of obstacles. “The best thing is not to have any solid expectations from your friends,” he said. “They are going through an adjustment as well.”
That’s a lesson each of us has to learn, SCI or not, and sometimes over and over again. It can be hard not to worry about finding friends who will understand your needs — both physical and emotional.
Over time, Ben learned to seek a certain model of friendship, and to accept no less. “We’ll never truly know how able-bodied people will react to us, we can only guess.” But Ben doesn’t let that stop him. “What I have learned is I’m not doubting other people, I’m just doubting myself.”
Wise friendship advice for anyone, wheelchair or not.