I still remember the first time I saw Eddie Crouch transfer into his car. I had packed up my rugby gear after a national team tryout at the Lakeshore Foundation in Birmingham, Alabama, and was rolling to the dorms to get some food before my flight. Crouch lived a three-hour drive up I-65 and was heading home. He was a C5-6 quad and the lowest classification level in rugby, .5. The .5s I knew either drove converted vans with lifts, or they didn’t drive at all. Crouch drove a Chevy HHR wagon, stock except for a set of hand controls. He angled his chair next to the driver’s seat, leaned forward so that his head was between his knees, locked his arms out and somehow got his butt up and over into the driver’s seat. I slowed down and watched as he broke down his chair and put it in the passenger seat. I shook my head — that was impressive.
In the SCI world, function is often thought of in terms of musculature — what remains and what doesn’t. In that mindset, there are two ways to maximize your function — either to increase strength or to wake up dormant musculature through rehab and therapy. But with minimal physical function, Crouch had figured out ways to do just about everything he needed to do in his life, independently — bed and car transfers, his bowel routine, showering, getting dressed, you name it.
I recently called Crouch to get the story on how he’s able to do everything that he does. As we chatted, I kept hearing echoes of my own experience maximizing my functional independence: while some of it came down to strength and physicality, a much larger part was mental. On the road to everyday functionality, physical strength might be helpful but it’s not going to get you anywhere without stubbornness, critical thinking and a great deal of patience.
I started packing my own lunches when I was in first grade. Sure, I occasionally packed a Ziploc bag full of olive juice (I have no reasonable explanation for this), but at least my mom wasn’t doing it for me. I was paralyzed at 17 and having to get help with the simplest tasks grated on me to no end. Anything I possibly could do on my own, I wanted to figure out. My parents got it rather quickly, because I told them explicitly, “If I want help, I’ll ask.” But the general public was another story.
Two of my classes senior year were in a part of the school that was up a half-flight of stairs. I could only access them by using a janky wheelchair lift, and abhorred starting the process only to have some well-meaning student come and help because I was struggling with it. So, I’d wait to head onto the lift until after classes had started and the hallways were empty. Then I’d be guaranteed a few minutes on my own. The days I made it on and off without being thwarted by a good Samaritan were major victories. Early in my post-SCI life, I learned that if I wanted to make it through a task without offers of help, I couldn’t look like I was struggling.
So I practiced. I worked on simple, everyday tasks, like opening doors — figuring out how to angle my wheelchair so I could open and get through doors in what looked like a smooth motion. If society was predisposed to view me as always needing assistance, my only workaround was to do them quickly enough that I’d be done before people had a chance to intervene.
Crouch was 26 when he was injured. He says that he was lucky to not have many complications, which let him get into the business of moving forward fairly quickly, before he lost a lot of his preinjury strength. He set functionality, rather than recovery as his primary goal. “I was never one of those, ‘I’m going to walk again’ kind of people,” he says. “I always felt like I would take whatever I had and do the best with it.” He made a habit of asking his therapists if there was anyone else with a similar level of function who could do a task independently — whether transferring into bed, driving a regular car or showering. “I figured if there was somebody else who could do it, there’s no reason I couldn’t.”
Crouch had just bought a house when he was injured. He says deciding to stay in that house after rehab and not go back to live with his parents was one of the best things that happened for his independence. Going back to work right away — he had a job with his family’s business in the commercial plumbing industry — and getting involved with adaptive sports were also key. He had a lot to do in his life, and the more you want to do, the more you have to figure out how to do on your own. When Crouch started going to rugby practice, the team had no nondisabled support staff, so the most assistance he was going to get was that of another quad. “I was sort of thrown to the wolves,” he says.
For both of us, rugby helped enormously on the road to independence. It requires travel, and it forces you to hang around others with similar function. It’s like a support group for Type As who hate support groups. Because rugby tends to attract independence-minded personalities, you can learn a ton just watching people get ready. “After 30 years, I’ll still pick up on things occasionally that might work for me,” he says.
There are plenty of people for whom taking help isn’t something to be avoided at all costs, as it can make getting through the day a whole lot more efficient. That’s not a bad thing, it’s just a different approach. But it would be very difficult to learn how to push the edge of your function without stubborn independence as a base. It can be such a pain in the ass that you need a powerful motivating force.
Pushing your boundaries also requires thinking through a problem in a few different ways. One is the ability to figure out the worst-case scenario. When I was learning how to do difficult transfers — whether out of a bathtub, onto a handcycle or into vehicles — the worst-case scenario was usually that I’d wind up on the ground. Once I’d fallen a few times, I realized that my body wasn’t as fragile as doctors and therapists had led me to believe. It took me a few years before I had the strength and learned a functional technique to do a floor-to-chair transfer. That opened up the world, because now winding up on the ground just meant I’d have to pop back up into my chair. For most everything else, the worst-case scenario was that I would somehow fail and then have to ask someone to help me. If I didn’t make an attempt, I’d have to ask for help anyway, so it seemed silly not to at least give it a go.
Crouch employed a similar mindset — it’s not really a lack of fear, more like a willingness to try. Case in point: his transfers, which look unlike anything I’ve ever seen. Face between his knees, his head will go so low its almost at his ankles when he’s pushing over from one surface to another. With no triceps, it really is the only way that he can off-weight his butt enough to be able to lift it, and even then, he has to externally rotate his shoulders so he can push off his arms without them collapsing at the elbow. Crouch credits a therapist in rehab with introducing him to the head-on-the-floor technique. “I’ve tried to get other people to do it, but they’re always scared they’re going to fall on their face or something,” he says.
I ask if he’s ever fallen on his face while doing a transfer. “Probably,” he chuckles. “Sure, over the years. But the thing is, if you do fall, your head is almost to the ground already, so it’s just a little roll onto the floor.”
Working through a task as a low-functioning wheelchair user also involves reframing the problem you’re trying to solve — thinking about the intended goal of a given task instead of how to adapt the task itself. Showering is a good example — the goal is not the process of showering, but to clean yourself. Crouch takes a traditional shower at home, where he has a setup that works for him. But when traveling, hotel room bathrooms are usually tight and designed in a way that makes showering unsafe to do independently. His solution is to bring a plastic basin, about 12 by 8 by 3 inches. He pours cups of water over his head, using the basin to catch the runoff, and shampoos his hair that way. For the rest of his body, Crouch uses a soapy wash cloth and sometimes, baby wipes. “Doing things the normal way doesn’t work,” he says. “You really have to slow down and use your mind to think things through.”
There’s nothing that will get me cussing quicker than working on my wheelchair. My hands suck. And there’s nothing that drives this point home quicker than trying to hold an Allen key in one hand and a socket wrench in the other. I’ll drop each somewhere between three and a dozen times before I even get started. I have thrown wrenches and casters across the room. Still, with long waits from DME repair companies, crap hands and all, I’m often my least-worst option.
Slowly, as I’ve gotten more experience in pulling the hair from my casters, adjusting my backrest or changing out my bearings, I’ve learned to take a deep breath as I start. “In through the nose, out through the mouth,” as my dad used to say when I got fired up as a kid. The closer the task is to the edge of your functional abilities, the more patience you’re going to need to find your way through it. That’s because you’re going to fail, repeatedly, before you start to figure out a method that works for you.
Perhaps the best illustration of the depth of Crouch’s patience is how he learned to tie his shoes with zero hand function. “It took me about two hours and a lot of finger licking to get one shoe tied the first time I tried it,” he says. He slowly found a method that didn’t take all morning. Breaking his chair down was a similar process. “The first time I did that it took me about two hours to get the wheels off, and by the time I did that I was too tired to finish. I had to go back in and go to bed,” he says. “The next day I did it, it took me 30 minutes, then 15 minutes. Once you do it the first time, it’s a quick progression from there, but you have to be willing to fight it for a while.”
Talking with Crouch, all of his daily tasks took a great deal of patience to master. Just putting his pants on, let alone socks, shoes and everything else, would take 30 minutes when he first got out of rehab. Figuring out how to transfer onto the toilet took him 10 years — a decade of having to do a bowel routine on his side in bed when he traveled. He was finally able to master that transfer when he got D’s Locks on his everyday chair and he didn’t have to worry about hitting a brake lever with his leg or a wheel moving slightly while he transferred. As much as anything else, what makes Crouch unique is his ability to work through problems over and over again, stacking marginal gains atop each other, without getting so frustrated that he says, screw it, not worth the effort.
Even so, in any life, there are tradeoffs. The one thing I asked Crouch about that he doesn’t do is cooking. It’s the microwave or nothing for him. It’s not that he couldn’t figure out how to cook on his own, many people with similar function do. But Crouch feels that even with practice, it would take way too long to cook a decent meal. It’s just not a priority for him. And when you don’t have much function, sometimes there aren’t enough hours in the day to do everything on your own.
Stubbornness, critical thinking and patience aren’t a guarantee for success, even for the things that are worth the struggle. But they’re the best option we have. Even when I spent significant time trying to master something that turned out to not be worth it, I rarely felt like the effort was wasted. Problem solving skills are like any other — they get better with practice.
There’s no denying that maximizing the strength of whatever musculature you have can make a wide array of everyday tasks easier. It’s just that strength alone isn’t enough. The physical and the mental work hand in hand (or fist in fist), and the proper mindset can help you better utilize whatever strength you do have. As increasing functional strength is a topic unto itself, here are couple of resources to get you started:
• Adapt to Perform — a great collection of fitness and workout videos, many of which can be done from a wheelchair with little or no extra equipment, bit.ly/2SMIN0i
• SCI-Ex Fitness App — Contains instructional videos and workout plans, all searchable by injury level, fitness goal, exercise type or exercise routine. Available on the App Store and Google Play
• “7 Budget-Friendly Products for a High-Performance Home Gym” — A quick and easy guide to assembling an affordable home workout setup, newmobility.com/2017/11/7-budget-friendly-products-home-gym