The Second Time Around

Posted by Allen Rucker in Life After Paralysis on December 01, 2021 # Lifestyle

Man holding a small white dog on his lap. He is in front of the ocean and using a wheelchair.I am constantly intrigued as to how people respond to a life-altering trauma like paralysis and, even more so, how those who have suffered such an event react when faced with another serious trauma. Is the response the same? Is the second event so psychologically devastating that it crushes your will to live?

I have a longtime friend who is disabled, Robert Slayton, a distinguished Professor of History at Chapman University. In 2008, he was diagnosed with the same neuroimmune disorder I have, transverse myelitis. His took a much different, much rarer course than my own version. I am a T-10 complete para, a generic-brand cripple. Dr. Slayton’s entire left side was paralyzed, arm and leg, making him a hemiplegic, the only TM survivor I’ve ever heard of with this variety. This made it difficult for him to transfer, write, walk, clap, and anything that demanded either two arms or two legs, a long list. But he figured it all out pretty quickly and simply recalibrated his life. A zippy power chair, a van with a lift, so he never left his chair, and a new set of skills, including driving with one arm and typing with one hand, all allowed him to continue to teach full-time, write a wonderful book on the New York Ashcan School of Art* and spend five more years researching a book on how 20th-century movies portrayed New York City, his hometown, versus rural America. Just recounting his workload tires me out.

A few weeks ago, I got a call from Bob to announce a new, strange, and even more debilitating turn in his condition. Out of the blue, the right side of his body became severely weakened and, at least from the waist down, as paralyzed as the left side. This is thirteen years after his first attack. In the blink of an eye, he was even more immobile and incapacitated. His right side was now too weak for him to transfer from bed to power chair, and his petite wife, Rita, couldn’t help with this essential maneuver. Upon hearing this, I gasped. What in the world was this? After thirteen years!

Following a short stint in the ER, Bob was moved to a rehab hospital in the Kaiser system to try to regain strength in his newly weakened limbs. In our conversations, he didn’t report much progress. Physical therapists worked him hard but with little result. Then, because Kaiser only pays for so many days of rehab, he was moved to a second, much inferior rehab facility. Here his stay became a nightmare inside of a nightmare.

The staff wouldn’t listen to him, ignoring his requests. It took an hour for anyone to respond to the call button, even if he needed to go to the bathroom. When they did show up, they were gruff and impatient. It took three days to get a bed with safety rails, a bit of a hindrance for a man who can’t move or even stop himself from falling off the bed.

It didn’t take him long to figure out the root problem. The staff was overworked and underpaid. One woman, he told me, was working seven days a week to get by and another worked six days with two of those on double shifts. He had situational problems. They had survival problems. He was struggling to sit up. They were struggling to live.

Dr. Slayton is now in an assisted living apartment and is doing fine, all things considered. He’s adapted to a Hoyer Lift to get out of bed. When I asked him how he felt about this new insult to his body, his answer was that it wasn’t anywhere near the shock as the first attack. It was more of the same. The implication was clear: he had handled his original trauma with purpose and grace and he planned to handle this one the same way.

The focus of our conversations has been on medical updates and concerns about others. I kept waiting for ruminations about the unfairness of it all. They never came. He talked about the badly treated staff, as I mentioned. He also noted how privileged he saw his own life. Most of us with adequate means and adequate health coverage think little about those who don’t. We blithely accept our status and complain about co-payments or hospital food. We live in a healthcare bubble.

As of 2018, an estimated 31 million Americans had no health insurance. Untold millions more don’t have the resources to handle uncovered expenses, loss of work, or someone to take care of their children. We think things like Obamacare fixed the problem. They didn’t.

Dr. Slayton also made mention of the indispensable value and support of his wife, Rita. “It’s good to have a mate,” he said, a mate who can both whip together his new assisted-living apartment, handle a thousand other matters, and make him laugh. It’s a gift that many of us must do without.

By the way, the diagnosis of his illness has completely changed. It went from TM to MS to the latest acronym, NMO, or neuromyelitis optica. This is a more generalized autoimmune disorder that often attacks the eyes, ergo “optica.” It has a new name but no prognosis. I ask Bob if that worries him, and he says no. He doesn’t ruminate about the future. He is focused on the tasks at hand: trying to physically improve and get back to his new book. He is a lesson in tenacity.

* “Beauty In The City: The Ashcan School,” Robert A. Slayton, Excelsior Editions, 2017

Allen Rucker was born in Wichita Falls, Texas, raised in Bartlesville, Oklahoma, and has an MA in Communication from Stanford University, an MA in American Culture from the University of Michigan, and a BA in English from Washington University, St. Louis.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.