Do you ever find yourself frustrated that you cannot do something someone else around your injury level seems to do with ease? It is a common struggle for many of us. Even if a diagnosis deems two people the same, when you throw in complete or incomplete injuries, body type, height and overall strength, no two spinal cord injuries are entirely alike. To compare is part of being human, though. After injury, we relearn who we are, and judging ourselves based on how we think we compare with others is a big way to evaluate our performance and place in the world.
Given the unique ways our bodies function after injury, it’s simple to match yourself unfairly and feel deficient. There is a fine line between struggling for independence because of what you see others doing and making safe choices that are right for your body and situation. Figuring the best way forward is a constant consideration after paralysis — sometimes we choose the smart path, and other times, we learn the hard way.
A Double-Edged Sword
Comparisons do not have to strictly be a source for feelings of inadequacy — by paying attention to others we can learn a lot about ourselves and find motivation to do more. Jay Davis has always done things at 110%. An aerospace engineer and bike racer before the plane crash 19 months ago that resulted in his C6-7 injury, he actively measures his performance against others to stay ahead of the pack. “I have a lot of the same goals with my career. I’m traveling and trying adaptive sports. I’m still very driven to fly. Seeing others in chairs succeeding at these things motivates me that I’m on track,” Davis shares.
A Colorado resident, Davis had the benefit of doing rehab at Craig Hospital alongside a handful of guys with lower level cervical injuries. “A couple of them are incomplete and walking now, while others had complete injuries, like me,” he says. “Through rehab, we all functioned pretty similarly. We were the Quad Squad, working out together and learning from each other. It was good camaraderie, but it also pushed me to pay attention to how they did things and challenged me to keep up.” Having friends who demonstrate their techniques and share their experiences is enormous as long as you recognize that everyone has some functionality mismatches. “It was like our basic training getting us prepared for war, and we have thrived from taking on the challenge together,” says Davis.
Rick Hayden had his T8 incomplete injury in 1976. There were no other people with spinal cord injuries at the stroke center where he rehabbed, but his first few SCI friends out of the hospital were hugely impactful lifelong mentors. “One guy was a T10, so full abdominals, and the other guy was a T9, so more abdominals, and then there was me,” he says. “I don’t know if it was frustration or if it was just that I wanted to push myself to operate at the same level as them. It wasn’t going to be perfect, but I figured if I was in better shape than they were, I could compensate a level or two. I would notice their deficiencies more and find ways to keep up or do even better.”
Unlike Hayden and Davis, Lindsey Freysinger had no people with comparable injuries to learn from during her initial rehab from an incomplete C5-6 injury six and a half years ago. That further complicated how she understood her already-unclear incomplete diagnosis and left her seeking others to talk with. Finding people who had experienced enough return to take a few steps and use crutches as a tool for some walking, while still having substantial upper limb paralysis and limitations, was hard.
“My mom got in touch with an incomplete quad who had a full recovery,” says Freysinger. “When I spoke with him, he was able to explain things to me about his experience and inspire new hope to work hard to maintain things.” Still, she wasn’t entirely confident that she would make a full recovery. “I knew I would walk some, but it felt unrealistic to think I was going to get everything back,” she says.
Comparing herself to people with extremely incomplete injuries made it difficult to set standards and end goals for her rehabilitation. Even now, having regained significant function and en route to her doctorate in nursing, Freysinger wonders if she maximized her potential. “I second-guess myself and wonder if with more physical therapy, maybe I would be further along. I have the physiological knowledge to know that others have more nerve preservation, but I still find myself wondering if there’s a chance,” she says.
Dave Pierson’s six weeks of rehab were a bit of a blur given that his third daughter entered the world only 19 days after his C6-7 complete injury. Like Freysinger, Pierson was the only person with a cervical level injury present during his time in the hospital, but he drew strength from meeting a fellow dad who had been living for years with the same diagnosis. “I knew that he was raising four kids of his own, and had found independence and success,” says Pierson. “I’m an easy sell, so meeting him planted the seed that getting back into the role of breadwinner and super dad was going to be no sweat.”
Feeling pressure to pick up where he left off, Pierson went back to work full-time as a supervisor at IBM only months after his injury despite having little time to work on his independent living skills. “I relied on a lot of help those first few years. I did little else than work and attend my outpatient therapies. A year and a half in, my marriage was suffering, and I was feeling overwhelmed. As I started to meet others in the community, I realized that almost no one was working as much as I did who hadn’t been injured for at least a decade,” says Pierson. “Three years later, when given a choice to transition onto long-term disability or be downsized, it was beneficial to know that what I was doing was a little bit crazy for any of the quads I knew. That helped with the blow to my former identity.”
Pierson has since committed to conquering his daily goals for independence. “It has taken me seven years,” he says, “but I can get into bed and get myself up most days on my own when I’m not doing a bowel program. It takes a long time, and I’ve had to forgo non-sweats fashion to be able to access the loop system I attach to my pants to get dressed, but I can do it independently now. I didn’t like needing more care assistance than some of my peers with higher injuries. I know some who do it all, so I’m willing to sacrifice ease overall to see if that is possible for me too.”
For Davis, a complicated secondary condition and surgical setbacks have left him frustrated that he hasn’t been able to get back to things as quickly as others he knows. Instead, Davis lost his hard-won gains in hand function and had to recover from two subsequent neurosurgeries to drain and re-drain a syrinx in his spinal cord. “I’m human, and there have been times I can be happy for my friends and temporarily jealous of their recovery,” he says. “It’s definitely possible to feel both emotions when comparing injuries without feeling resentment towards anyone personally. I can get para-envy too, when I see someone using their fingers and hands or being able to lean and reach using their abs. The differences just feel bigger and heavier when you are facing a setback.”
Having a realistic mindset is essential. For Hayden, after years of working in the wheelchair sales business, it became clear that your injury level isn’t always the best point of comparison. “You can line up 10 people right now who have a T8 injury, and you would have 10 distinct situations, life scenarios, abilities and attitudes. So, a long time ago, I just stopped worrying about that, but I compare my body how it is now to the body I had in the past,” reflects Hayden.
Against Better Judgment
Knowing who you are comparing yourself to and your motivation for the comparison is an important consideration and a smart thing to periodically evaluate to keep your goals realistic. Pierson has fallen a number of times in his quest to do it himself. “I have gone headfirst into the fridge reaching for an item and tumbled onto the floor reaching for things I’ve dropped from my power chair,” he admits. In opposition to his indoor risk-taking, Pierson has started limiting his away-from-home activities to things he can do strictly on his own. “I’m at the point I avoid anything where I’m going to need assistance. There are a few things I’d like to try theoretically, but I’d rather do less than get help,” Pierson says staunchly.
In 1977, a year after Hayden’s accident, he and his friend and T10 mentor, Larry, met an inventor who crafted hand-powered trikes. The two friends had talked about biking the 75 miles across Cape Cod and decided to test the trikes there. Despite struggling to keep up initially, Hayden was feeling surly. “There was a news van and camera crews initially in front of us, and I knew if that made me need to slow down, I was going to struggle because I couldn’t lose momentum. Luckily though, it evened out, and it was a pretty amazing trip,” Hayden admits. “The beginning was hard, and I so wanted that bike to break, but I couldn’t quit. I did it to keep up with Larry. He was a big strapping guy, and he was always saying, ‘Oh, you skinny guys have it easy!’”
As years pass, people with spinal cord injuries often find their own level of what they are willing to struggle with and what is genuinely worth their time and energy. Our diagnoses become something we talk more about with clinicians, than with those in our lives. We become acutely aware of what works for us. We then can appreciate the accomplishments of others as ideas or motivation for expanding our own independence, while also recognizing that some things are just not in the cards. It is our responsibility to determine our metrics for personal fulfillment and to determine the level of sacrifice we are willing to make to reach goals on our terms.
For many, social media has replaced rehab as the primary means for keeping up — and comparing — with other wheelchair users. As helpful as seeing and talking with an expanded selection of people in similar situations can be, social media’s notoriously distorted mirror can leave many struggling to understand why they can’t keep up.
Lindsey Freysinger, an incomplete C5-6 quad, feels this from both sides. “I end up interacting with others with spinal cord injuries more on social media, and it’s hard not to compare yourself with the portrayals highlighting people’s constant wins,“ she says. “I see people with SCI doing athletic things I’d love to do but that would wreck my body and put my capacity to finish my degree in jeopardy.” On the flipside, Freysinger knows her own Instagrammable moments can leave others feeling inadequate too. “I’ve had other spinal cord injured women compare their body to my body. I feel the need to explain that I’m incomplete and able to exercise and use e-stim and that my intense spasms help my muscle tone, but I also know what it’s like to have unrealistic insecurities,” she says.
As a walker with SCI, Freysinger often interacts with a community of people whose injuries are so incomplete that they are, for all intents and purposes, how they were pre-injury with only a few residual side effects. “I struggle sometimes seeing the things people can do that I can’t,” she says. “It’s easy for me to fall, and there’s no control when I do, so it’s abrupt like a tree falling. My body can’t catch itself, so I have busted my eyelid, scratched myself up, and given myself a concussion falling out of my truck. It’s hard. I see a counselor once a month, and pretty often we have to work on my recognizing that I am a vulnerable person and finding ways to prepare for the damage that unhealthy comparison brings.”