When my fiancée, Claire, and I arrived at Kristen and Jeff’s house last October, our meeting was a testament to the power of social media to connect people with similar situations. Though we had never met any of the attendees in person, we weren’t rolling into a group of strangers, but an extended family separated only by distance and length of Facebook friendship.
“That’s what’s so unique about the situation,” says Glen. “Here you show up, I’ve never met you in my life, but there is that immediate familiarity. Here’s a guy that knows exactly what you’ve gone through; there’s an immediate camaraderie.”
Connecting like this is something people take for granted these days. It hasn’t always been this easy to find each other. When Glen and Chad were injured in 1996 and 1998, respectively, the internet was barely even a thing. I became a C3-4 quad in early 2004, and that was only the dawn of the social media era. Save for a handful of labyrinthine message boards with impersonal screen names and endless rabbit holes, the only way to find one another was the old-fashioned way, at outpatient rehab or randomly on the street.
Chad visited a local transitional care center soon after he was discharged, but was unable to establish any meaningful connections. “It just wasn’t the right fit for me at the time,” he says. “So I decided to dive back into school and work.” Glen had the random dumb luck of moving to a neighborhood that had two other quads within one small loop. “I was super fortunate to have that camaraderie early on. But before that, I had nothing. I would go out and about in my wheelchair and I was the only one.”
I wasn’t so lucky. My first six years of post-injury life were spent as a virtual shut-in, battling a string of pressure sores that helped trigger a toxic level of depression. Getting out in the world wasn’t an option. I would hear about others in the community through my home health nurses, but that’s as far as it got. Not that I was all that eager to meet anyone else in a wheelchair anyway. For quite a while in my early recovery, I was more focused on the differences between me and others instead of any common threads we might have.
That all changed in 2010 after a random encounter with another quad introduced me to a seat cushion that would get me healed and back out in the world once and for all. That one connection saved my life and set me on a mission; I went from the guy who didn’t want to meet anyone in a chair, to the guy that needed to meet each and every one I could find. At first it was mainly about self-preservation, but the more people I met, the more those common threads began to shine through. I didn’t have to explain every dirty detail of my life to these people because they understood it in ways nondisabled friends and family never could.
Flash forward to today. A quick Facebook search for “spinal cord injury” brings up dozens of support groups of all kinds. Often grouped by diagnosis, location, or relationship, there are pockets of thriving support all over the globe. In fact, it was only a couple days after Claire and I got engaged that Andrea Hansen reached out and graciously welcomed her to the “What We Share in Common” wives group. It quickly became an invaluable resource for the both of us. Even only four years into his injury, Jeff can see that his family needs just as much support as he does. “For Kristen, it was a great way to express her feelings, which was nice.”
Within minutes of our arrival, we were eyeballing each other’s chairs, comparing and contrasting our respective assistive technologies, chair hardware. “It was the little things,” says Chad, referring to minor quad life-hacks or recommendations for which types of clothing keep you warm. By the evening’s end, we’d all learned something new.
For me, the timing could not have been more perfect. Here I am on the verge of some major life changes — getting married, hopefully starting a family — and I’ve got three guys at my level who are living that life and living it well. Chad and Glenn shared tips and tricks for adapting wedding dances, and Jeff shared how much having a child adds to the richness of his post-injury life.
Both Chad and Glen, who have very little arm function, left the gathering with their perspectives changed after seeing how independent and active both Jeff and I are without any arm function at all. Jeff points to the wealth of knowledge and wisdom his three visitors had in more than 50 years of collective paralysis experience. “It’s always good to have peers you can count on, folks you can reach out to and see if they’ve gone through it before.”
Connections on social media are great and can be invaluable resources, but there is nothing quite like the ability to get knee-to-knee with someone who knows what you’re going through. “Granted, there’s something to be learned from anyone,” says Glen. “But there is crucial information, motivation and growth in meeting other quads.”