“I’m always picking myself up off the floor. … You’ve got to look at each little success and not demean it.”
When most of us think about people with disabilities, I’ll venture to say that we tend to think of three groups of people: 1) the elderly who, after many able-bodied years, are relegated to their walkers, canes, and wheelchairs because of arthritis; 2) young children marred for life by their congenital abnormalities; and 3) those who led normal lives and were in a major accident, usually of the automotive or extreme sports varieties. But Brian fits in none of those categories (few of us do), and his story resonates with me, shakes me, even terrifies me, and then almost immediately fills me with hope and warm fuzzies.
Fifty-three years old, happily married with two loving stepdaughters, professionally successful, relatively healthy, very athletic, and without a real complaint in the world, Brian was in the prime of his life. He remembers well what he calls his “Last AB (able-bodied) Day”: “…[It] was a typical morning. I was preparing presentations and materials for a two-day road trip to Kentucky.” He started to feel an aching in his chest, which he thought must have simply been a pulled muscle. He tried to stretch it out. The ache turned into numbness, but he still thought little of it and kept on stretching. Luckily, his wife Carol was home that morning and insisted they go to the ER. In short, (you can read the unabridged version on Brian’s daughter Laura’s blog) Brian suffered a rare spinal stroke that took the doctors five days to diagnose and one doctor to deem a “freak act of nature”. A four-time New York Marathoner, Brian was now a quadriplegic, paralyzed from the neck down, needing round-the-clock care and struggling to accomplish the most basic tasks. He couldn’t sit up by himself. He couldn’t feel his body. He couldn’t control his bladder or his bowels. His muscles spasmed, he had respiratory issues and nerve pain. A once idyllic life, in mere moments, was replaced with feelings of powerlessness, fear, and isolation. What do I do now, Brian wondered.
Fortunately, though, those feelings didn’t last too long as his friends and family circled the wagons around him, ready to offer support as this new and different phase of his life crashed in. Hours after receiving the news of Brian’s admittance into the hospital, people from all over the country dropped what they were doing and got on the next available planes or hauled ass in their cars to be with him in Charlotte, NC. One friend didn’t even bother to pack and had not even a toothbrush with him when he arrived in Brian’s hospital room. These amazing supporters, who I’ll call Team Brian, organized meals and care packages, transportation to and from therapies and doctors’ appointments, company and plenty of laughs* for Brian, Carol, and their daughters as they struggled to figure it all out. It is due, in large part, to Team Brian that Brian is where he is now: independent, active, and, most importantly, hopeful. He explains to me that they (Team Brian) would be angry with him if they heard him say it, but “I have to prove myself worthy of what they’ve done for me. They say they’re inspired by me, but I’m the one who’s inspired by them.” He then gives me a piece of advice: Be kind. Be humble. You don’t know what your future holds. “All those bonds you make in life are worth it. All the kindnesses I once gave came back to me when I needed it most.”
Now, only three years into the disability world, Brian is considered a youngin, or a rookie as his quad friends call him. “I’m still in my cocoon,” he agrees. You know how parents of toddlers will say their kid is 13 months old instead of 1 year old, which confuses math-hating non-parents? That’s because the development and stages vary greatly from the 12th to the 13th months in a baby. Disability ages can function similarly, independent of that person’s body’s age. I ask Brian more about his “Can’t Stop, Won’t Stop” attitude as I secretly liken him to a toddler, eager – hell bent – on walking, learning, moving, discovering, destroying everything in his wake with energy and tenacity. I ask if he’s yet hit the first plateau of realization that most, if not all, people with disabilities meet, once the gains are smaller and less noticeable, once the “Yeah! Disability Pride!” morphs into “Yep, still disabled…” to “This shit is never going to end.” He says he has and though each anniversary of the stroke is epically celebrated with a big party, The Realization came to him at the second year mark. “I probably spent the first two years in denial, definitely the first year, (that I’d never be able to walk again). Ignorance is bliss, you know? But the transition was about 12 months ago. You know, certain things just aren’t going to come back.” But lest one feel sorry for Brian, know that it is merely the reality, and one that he’s okay with – or is working to be okay with. “I’m in the process now of keeping what I do have and to become as strong as I possibly can. I can’t let my muscles atrophy, because that’ll be the end of it. In the future, if something is developed that’ll help me walk again, I want to be ready for it.”
Through constant and dedicated physical therapy and training, oftentimes six days a week and up to six hours a day, Brian has regained some mobility and has use of his arms. Ever the athlete, he’s on the Carolina Crash Quad Rugby team**; he water skis, kayaks, and handcycles with Carolina Rehabilitation and Team Freak***, recently cycling 180 miles (60 miles per day) from Monroe, NC, to Myrtle Beach, SC, for a fundraising event called “Cycle to the Sea,” which he did alongside two of his best friends, one of whom is the aforementioned “Ain’t Nobody Got Time For a Toothbrush” guy on Team Brian. Brian seems unstoppable, but he’s also honest and shares with me the other side of what most people perceive about him and about most people with disabilities. “I mask a lot of it. It’s a struggle every day. Getting up in the morning, getting through the day, getting [my]self dressed… That’s a good day in my book. That’s an accomplishment.” And with that he hits the nail on the Redefining Disabled Project’s head.
Each day, each moment really, the Average Joe with a disability scales his own personal Everest. That Everest may take the form of getting dressed, climbing the seemingly easy hill to his destination****, making it through class, or even just getting out of bed. Sometimes finding the strength to smile is pretty damn impossible. But, Brian says, “Feeling sorry for myself ends real quick, because I can look to my left or right and there’s someone far worse off than me,” and I’m sure he’s not just referring to other people with disabilities. I share Brian’s perspective that, for us, this is just life and, he says, “There are so many inspiring things in [other people’s] lives too. They just got to take a look.” Carol, his wife, echoes his optimism and says that, though the last three years have been “challenging”*****, the stroke and its aftermath brought about an almost entrepreneurial spirit in Brian, this “get ‘er done” attitude. Carol says he’s more likely to say, “Let’s do this” and “Let’s get involved” now. While he used to be highly focused on his professional life, he is now focused on his health, his activities, and the charities for which he’s working.
To borrow a lyric from the Beatles, those of us who are lucky to have our own Team Brian equivalents get by with a little help from our friends. Brian admits – though it’s more like he’s preaching to the choir – that he definitely has days in which he wakes in the morning and realizes that, yes, he’s still disabled and, no, it isn’t just a bad dream, but a lot of those emotions come from a universal disability truth that he articulately shares: “I think we’re all desperate for independence. But the only limitations on me are the ones I place on myself.”
*Brian’s cousin, Paul, had the wherewithal to sneak bottles of wine into Brian’s hospital room, where his disarming humor distracted everybody from the tragedy and brought an impossible energy and lightness to a very heavy situation. When the nurses, who Paul had locked out of the room so Team Brian could drink their wine against ICU rules, finally made their way back in and were doling out slaps on the wrist, Paul even placed the blame on now-paralyzed Brian for smuggling the wine in. I had the pleasure of meeting Paul toward the end of my interview with Brian. Trust, he is a force to be reckoned with. Pointing at his cousin, Brian leaned over to me and said, “How could I even think about not walking for the rest of my life with this guy in my room? Sheesh!”
**A rugby team on which the players are all quadriplegics. These guys are no joke and are definitely who you want on your side when in a bar fight. Check ’em out: http://www.carolinacrash.org/
***Remember the physician who said Brian’s spinal stroke was a “freak act of nature”? Brian was, of course, insulted, but turned the hurt he felt into inspiration for his handcycling team name.
Let it be known that though the “freak of nature” phrase is commonly used to describe occurrences out of the ordinary, the outliers, words like “freak” used in any context are trigger words for most people with disabilities. I’ll go so far as to include “crippled”, “handicapped”, “retarded” and even “disabled” on that list. Those words pack a powerful punch and, though sometimes used in harmless jest, those titles have often been used pejoratively to label, to “other” people with disabilities and they are, by no means, harmless. There is a lot of history and a lot of hurt behind those words. Please choose your words kindly and wisely.
****Brian and I met at a winery in St. Helena for our interview and, as I often do, I called ahead of time to get an idea of the accessibility of the grounds. The person with whom I spoke labeled the one hill we had to scale as “easy”. When I asked, “What do you mean by easy?” she laughed at me and told me not to worry about it. So I didn’t. But when I arrived, I found that hill to be rather steep, taking a break halfway up and breathing heavily by the time I reached the top. When Brian arrived, he too mentioned the hill: “Did you see that thing?!” Both of us are extremely fit and physically able but not everybody is. Easy hill, my ass.
*****Carol used the word “challenging”, but Brian described the stroke and the three years since as “better than hell.” They both laughed knowingly and lovingly as she knodded in agreement, “Yep. Better than hell.”