“You’re not that disabled…” The public—and even some of your friends and family—assume you’ve won the disability lottery. But as someone who’s living with an incomplete SCI and can walk, you know that isn’t exactly the reality.
“An incomplete SCI is life-changing; you might seem normal to others, but your life is not—and never will be—as it used to be or could have been.”
These are the words of Vancouver SCI BC peer Susan Cush, an incomplete C2-3 quadriplegic who is ambulatory—in other words, she can walk for limited distances. Yet she admits that, for many years, she did her best to convince herself and others that she was anything but disabled. It was only much later in her 43 year post-injury journey that she realized her denial.
As SCI BC’s Resource Centre Manager, Jocelyn Maffin is in contact with many of our peers who are in the same boat as Cush—people who, at some point, have no choice but to acknowledge and come to terms with the many unique challenges of having an ambulatory SCI.
For many, says Maffin, these challenges begin in rehab with high expectations for recovery—their own expectations, and those of their friends and family. It’s often a painful pill to swallow when it becomes clear that there’s a limit to how much function they’ll regain.
“Returning to their communities post-injury, a really common theme I see is the struggle between expectations of recovery and the realities of everyday life,” says Maffin. “The uncertainty about recovery is huge, and the journey back with ambulatory SCI can feel really unclear. Can I work? Do I need major adaptations? Whether the pressure is from within or outside, it seems that many ambulatory peers don’t know what to expect of themselves and struggle with the perception of others around them. In many ways, I think it’s harder for this group to adjust to their new lives, not knowing exactly how much return of function they’ll get; not having a generally accepted and predictable journey like we see with folks who have more paralysis.”
She adds that others’ perceptions and misconceptions about this type of injury contribute to the problem. If you can get up out of your wheelchair, why do you need one? If you can walk, who cares if you tire easily, or struggle controlling your bowel and bladder? What’s a little pain when you can get around on your own two feet?
“For many, it’s a big struggle—the invisibility of what they’re dealing with to those around them,” she says. “Those of us using wheelchairs most or all of the time can feel underestimated, but our validity as someone in need of support isn’t questioned. Our chairs are proof of our membership, but it’s not so obvious for ambulatory peers. That makes things complicated when people around you see you walking again to some degree and consider you recovered. Ambulatory peers tell us that people around them forget they have a permanent disability, and expect them to be their old self, keep up physically, or manage family roles the same way they always did. Meanwhile, they’re also dealing with the invisible complications of SCI: pain, fatigue, sexual dysfunction and bowel and bladder issues, for example, without the external validation of the struggles they’re dealing with, in the form of a wheelchair.”
Enter the process of aging, and all of its unique complications. Legs and balance that don’t work as well as they used to. Loss of bone density due to SCI and subsequent fractures. Secondary complications like pain, spasticity, and bowel and bladder dysfunction that get steadily worse, forcing people to consider major changes like using a wheelchair full-time at a time in life when many non-disabled people think of themselves at their prime.
All of this, says Maffin, can create a perfect storm—people with incomplete SCI often seem to struggle with asking for help in the first place, and when they finally realize they need to, they overcome their discomfort at doing so only to discover there’s often not a lot of support out there that’s specific to their situation.
“Falling through the cracks almost seems to be a rite of passage for ambulatory peers,” she says. “They initially seem to spend less time in hospital and often miss out on the connection with other people with SCI, and with our SCI resource centre, and the important education they’d get at SCI-specific rehab. I hear, ‘I didn’t realize there were other people out there like me’ or ‘I didn’t know what I was dealing with was considered a spinal cord injury until now.’ When you don’t truly understand the implications of your injury, it’s profoundly difficult to learn about it, figure out how to manage it and find people like you to learn from—and this seems to be intensified for older people, after a life of downplaying disability and fiercely maintaining independence.”
Little wonder that many experience an internal struggle when they’re trying to figure out where they fit within our SCI community.
“Many people speak about feeling guilty or uncomfortable that they regained walking function, while so many others haven’t,” she says. “Also, we often joke about how every conversation eventually devolves into talk about your bathroom needs when you’re with a big group of peers. But this off-colour humour or frankness that comes from a shared inability to conceal our body’s dysfunctions can take on a whole other meaning when you’re struggling with all of the issues of life being someone who is incomplete and can walk, and you’ve always tried to conceal or downplay these types of issues.”
Here at SCI BC, we think we’ve always had an open door for people with incomplete injuries who can walk. But we know we can do better. And given that the number of these types of injur- ies are rapidly increasing, we have to do better. And that’s why we’re stepping up our efforts to provide meaningful support to peers with these types of injuries.
“We’ve had ambulatory peer groups for awhile now,” explains Maffin, who is part of SCI BC’s effort to understand and support this population. “We have a Facebook group for incomplete SCI that is a gathering place for ambulatory peers as well, which we created when we realized how few options there are. But we’re committed to doing more.
I recently had an aha! moment while meeting up with an ambulatory peer who had been to a few of our events and was feeling kind of frustrated. As we talked, suddenly I realized: our events were so wheelchair user-focused that we never brought outdoor rec equipment that allowed him to use his feet and legs. All handcycles, no bicycles. We often forgot to put out enough chairs to sit in, and of a kind that a walking peer—who might have the same issues with pain, skin and circulation that most SCI peers have—would be comfortable sitting in. I felt profoundly embarrassed after all this time talking about every kind of diversity in our community and realizing that we have so much to learn about building a community that ambulatory peers, an increasing portion of our community, would feel supported in.”
Ambulatory peers reading this can expect to see our events, both virtual and in-person when we return to that, more relevant and prepared for them. They can also expect to find more relevance in our various information resources and communications vehicles, including our social media pages and The Spin.
“I think we’ve begun to recognize the need to create some peer support time to connect ambulatory peers to each other, in addition to ensuring that our events are welcoming to them,” says Maffin. “We know these peers are scattered across the province, making it even harder to provide them with the opportunity to connect with another ambulatory peer at an event near them. In the short term, SCI BC is starting a monthly ambulatory peer group this fall via Zoom to connect peers to each other. Ryan Clarkson, SCI BC’s Peer Coordinator at GF Strong, is hosting. We’re planning a retreat geared toward ambulatory peers (as soon as public health guidelines allow), so that we can draw in folks from around the province for a fun weekend of recreation, and a chance to feel that ‘click’ of peer support that happens when you talk with someone who really gets you.”
Beyond that, we’re also going to do our best to stimulate more research around this unique form of SCI with the goal of creating better recognition of the accessibility and healthcare needs for peers who are ambulatory.
In fact, that’s already underway, as we’ve teamed up with ICORD Principal Investigator Dr. Ben Mortenson to conduct a study that attempts to better understand their needs and the gaps in support they experience.
“I did some research to find other examples of peer support or recreational programming geared toward ambulatory people with SCI,” explains Maffin. “I stumbled across a publication of Ben’s on PubMed about outdoor recreation and people with MS. What drew me to it was the community-oriented approach that looked at all angles—what their participants got out of these events, but also what they needed; what made them feel most supported. Joining together on a project seemed like a good chance to learn from our community, and in turn, share the knowledge.”
Maffin reached out to Mortenson, and found a more-than-willing researcher.
“Jocelyn suggested that we dig into the experiences of people with incomplete SCI,” says Mortenson, who has a PhD in Rehabilitation Sciences. “The needs of people with incomplete SCI are frequently overlooked and are poorly understood by others. Previous research in this area suggests people with incomplete SCI experience difficulty reintegrating into their community, have barriers that limit their participation in desired activities, and have unique challenges because they are living with an invisible disability. All of these factors can have a significant impact on individuals’ quality of life, and current services and support may not be very helpful in mitigating these impacts. Historically, most programs and services for people with SCI have focused on those with more complete injuries, and thus individuals with incomplete SCI may feel that these supports don’t meet their needs or feel that they’re not welcome to participate. So our study seeks to address this gap in knowledge and use what we learn to improve supports for this group.”
A primary goal of the study, says Mortensen, is to disseminate the findings with the goal of increasing awareness about the needs of people with SCI who can walk, helping the SCI community advocate for practice and policy changes that may ultimately improve their quality of life, and giving organizations like SCI BC a tool they can use to provide better peer support and encourage inclusion within the community.
The study will rely exclusively on interviews with people with incomplete SCI. “They are the experts given their own learned experiences, and thus are the best resource for identifying gaps and suggesting improvements,” says Mortensen.
Maffin hopes the results will be an important tool as SCI BC ramps up peer-to-peer support for a group of people who are often unsure if they fit in, don’t feel supported, and may find themselves isolated later in life as their needs intensify.
“This kind of isolation isn’t uncommon, and in some ways typifies the ambulatory experience,” she says. “For example, I hear from a lot of ambulatory or semi-ambulatory folks that they resisted getting more adaptive equipment or using a wheelchair because they thought they’d feel more disabled if they did. Instead, it helped them feel more control and independence. Sometimes that’s a stereotype that comes out of our own heads. My hope is that, no matter how peers are getting around, they realize we get what they’ve been through and the invisible SCI stuff they deal with. It gets easier when you know you’re not alone in dealing with it. What I’d say to them is to try a peer event or zoom session once and treat it like a ‘check in’—share your ninja skills and you might find that you’ll learn some yourself. I find that when we can help connect folks to someone they click with on a peer-to-peer level, those negative messages or stereotypes kind of fall away.”
For more details about our ambulatory peer sessions and other efforts to improve our services for ambulatory peers, check out our online events calendar at sci-bc.ca and future issues of The Spin. You can also reach out at any time to Ryan Clarkson at firstname.lastname@example.org
Liked this story? Read more about the Setting the Record Straight on Living with an Incomplete SCI