Sudden Paralysis and 'The Best Seat in the House'

Allen Rucker learned the skills, and the indignities of life in a wheelchair. i i

hide captionAllen Rucker learned the skills, and the indignities of life in a wheelchair.

Allen Rucker learned the skills, and the indignities of life in a wheelchair.

Allen Rucker learned the skills, and the indignities of life in a wheelchair.

In 1996, Allen Rucker had no real complaints: happily married, two kids, a house in West Los Angeles. At the age of 51, his career as a television writer was looking up.

Then one Tuesday, out of the blue, he started to feel a burning sensation around his waist. Inside an hour an a half, he was paralyzed from the waist down by a rare condition called transverse myelitis.

It sounds like a nightmare, and he had a few of those, but in his new memoir, Allen Rucker describes his new life with honesty, accessibility, and irrepressible impudence.

Excerpt: 'The Best Seat in the House: How I Woke Up One Tuesday and Was Paralyzed for Life'

Chapter Three: Dignity Takes a Holiday

Now I was home, and it felt pretty damn good. A neighbor built a ramp up the back steps, and Ann-Marie fixed up a hospital room away from the hospital on the ground floor of the house. A cavalcade of teachers from Max's school showed up daily with the best homemade food imaginable. One night it was tortilla soup or homemade enchiladas, the next night, fried chicken and pecan pie. But this went on for only a few days, and I felt an acute loss when it stopped. The party was over. Now it was back to my mother-in-law's meatloaf and boiled potatoes.

I stayed in that modest ten-by-twelve-foot room for the next three years and got sick of it toward the end, but compared to the sterility of Cedars, it was the Ritz. I had every time-wasting electronic gadget I'd ever need and even a swimming pool out back to slide into whenever I felt so bold. The room got the best morning light of any room in the house and I could even peek out the window and see who was coming up the walk to visit me. If I didn't want to encounter a visitor, I would be "sleeping."

I felt a bit like a wild animal that had been captured, hospitalized and rehabilitated and was now going through the gradual process of being re-introduced to its native surroundings. I knew I wasn't quite ready to bound back into the outback of human society. I was a little weak from six weeks in a hospital bed, but that really wasn't the problem. The problem was psychological. I was embarrassed, ashamed, and scared. I had been stripped of my dignity.

This problem of dignity is something that began during my hospital stay, but it didn't really hit me until I returned to the civilian world. Surrounded by stroke victims, you don't really measure yourself against normal, intact people. I was well-aware of my physical infirmity, but this decline of self-worth sneaked up on me. Lost dignity is not something most of us think about before we lose it. We don't want people staring at our mismatched socks at our sister's wedding or some huffy Parisian waiter laughing at our pathetic attempt to order "boeuf" in high school French, but unless you're homeless, a stage three alcoholic, or Jimmy Swaggart caught with your pants down, most of us rarely experience full-blown shame. It's a terrifying state.

I doubt if I'm alone in fearing, deeply, the prospect of having my dignity snatched away in broad daylight. It probably dates back to the first grade and the bone-chilling prospect of looking down and seeing that somewhere between the drinking fountain and the fire drill, I'd had an "accident" and the next class was show-and-tell. Soon the principal would be announcing this mishap on the PA system. "Attention, all students, the Rucker boy has thoroughly soiled his britches and no one should point at him in class. Laugh all you want, but no pointing."

Martin Mull, coming of age in North Ridgeville, Ohio, actually had this experience and later reenacted the moment for an HBO special that was broadcast from his hometown. The piece was called "Stealing Home." Martin was about ten, playing in a hotly contested Little League baseball game on a late summer afternoon. He was on third base, the last chance for his team to tie the game in the last half of the last inning. The batter was a klutzy non-athlete named Lefty who was inexplicably batting right-handed, so things didn't look good. Martin's only shot at baseball immortality was to brazenly steal home.

Unfortunately, the excitement was too much for young Lou Brock in training, and he peed all over himself, a yellow current trickling down his leg like the Ohio River during flood season. Smart boy that he was, Mull figured he'd steal home anyway, cover his embarrassment with the dirt of the slide, and be hoisted on the shoulders of his teammates for tying the game, his lapse of bladder control never revealed. He took off down the line; the pitcher saw him in plenty of time and tossed the ball home. Pee-boy was out by a mile. The game was over, his reputation as the go-to guy was in tatters, and when he stood up as the game's loser, the dirt and urine had turned into a conspicuous mud sculpture from his waist to his knees.

You get the point. We are all — from the heights of Courtney Love to the depths of Jerry Springer's next guest — only one small faux pas away from deep humiliation. We seem to have a genetic imperative not to blubber in public, not to moon the audience on national television, not to shout "You really like me," not to get so drunk you take a leak in a potted plant, not to sheepishly back down from a fistfight that you started, and a thousand other acts of dignity exposed and demolished.

That's why we laugh so hard at the same thing at the movies. When we see John Candy mud wrestling (and losing) in Stripes, we howl. When we see Ben Stiller get his thingy caught in his zipper in There's Something About Mary, we point and mock. But when it happens to us, we bury our head in shame and try to steal home.

My late mother had a thing about keeping her dignity at all times, especially when she and her four children were out in public. There was no T-bone steak gnawing or toothpick picking at her table down at Murphy's Steak House. And if she thought she was being disrespected by a waiter because she was a single woman with four kids she could barely control, she would, in a very dignified fashion, destroy the guy. He might wince at her acidic tongue-lashing about his use of the word, "ain't," but the next time he brought coffee, it would be piping hot.

As much as the world irritated and frustrated her — which was often — I never saw my mother lose her dignity by shouting, cursing, spitting, cowering, wallowing, wailing, or belching. Like the fictional heroine of the acclaimed TV-movie The Autobiography of Miss Jane Pitman, she always held her head high. Apparently this was not a trait I inherited from her, since I spent much of my life with my head in the "duck" position.

My current dignity problem began with the 911 encounter with Hans and Frans, the skeptical EMTs. It then continued with the infantile helplessness I experienced in the hospital, though not on any conscious level. At first, I kind of enjoyed the special status of the sick, at least the sick who can sit up in bed and chat with the un-sick. I was accorded an extra dollop of dignity for just popping jokes in such a predicament. Especially when I learned that there was a dim prospect of recovery, I tried to see myself as that skier with a broken leg. I had experienced a serious tumble, but soon I'd be back on the slopes regaling my friends with stories about the tree that had jumped in my way. I started to look forward to looking back on this horror, like the famous photo of President Lyndon Johnson, in his crude, country-boy fashion, raising his shirt and showing the world the foot-long scar on his fat belly. A photo of my leaving the hospital in my wheelchair, my thumb high in the air, would make a great story for the grandkids.

But, back home, I came to realize that the hospital stay had rekindled some basic childhood fears and was but the first stage of an extended assault on my whole sense of self. I began to worry incessantly that some colossal bowel incident would happen again, this time in front of nonprofessionals. Having no clue as to what was going on "down there," I checked every fifteen minutes and headed for the bathroom every thirty. Thankfully, in my case, these major indignities didn't become chronic events. During this period, I read on the internet how many severely impaired people — quadriplegics with additional complications, for instance — want to die not because they are in physical pain, but because every moment of their compromised, infantlike existence is bereft of human dignity. From just the handful of undignified accidents I'd already experienced, that made perfect sense to me.

Though seemingly free of the big, five-alarm indignities (though, of course, you never know), I soon became familiar with a thousand minor, often stupid, ones. Flipping over in my wheelchair, for instance. Early on, this would happen about twice a week. I would thrust forward, the chair would slip back, and there I'd be, on my back, feet in the air, flipped-turtle style. This rarely hurt and always looked more precarious to others than it really was, but I always felt foolish, and still do. Avoid magnanimous bear hugs from 200-pound friends when they drop by to cheer you up. You will probably end up under the computer table with your friend on top.

Searching on Google, I learned that paralytics have a high rate of drug and alcohol abuse. On the one hand, this makes sense, especially if you become paralyzed at a young age. It's a taxing, monumentally frustrating situation that invites self-medication. On the other hand, I began to wonder, how do all of those wheel-based alcoholics and stoners stay upright? Once I had escaped from the alcohol-free zone of Cedars, I was ready for a glass of wine or two. Okay, three. Hey, I was paralyzed! A little brain-pickling seemed in order. Until I realized that I couldn't function in a chair under the influence. I'd turn sharply to reach for a wine bottle, lose my already precarious balance, and go down like a woozy middleweight.

To this day, feed me two and a half glasses of wine and I'm liable to end up in the turtle pose in front of the dinner guests. It's a hard situation to talk your way out of. "Darn that rug! Honey, we have got to tack that thing down." Intoxicants make you lose control when you're trying to do everything you can to maintain control. It's no fun to lose what you don't have much of to begin with.

I soon came to learn that, drunk or sober, you are always at a physical disadvantage, sometimes embarrassingly so. There is one startling moment of humiliation that still grates on me, a moment when I came to identify with every case of police abuse ever filed. About a week after I had come home from the hospital, Ann-Marie and I were alone one evening, working on adjusting to this new state. We had yet to do any retrofitting of the house to accommodate a wheelchair. I couldn't squeeze through the opening of the downstairs bathroom, so we had taken the door off and replaced it temporarily with a long curtain. Assuming I didn't lose my balance and fall off the makeshift attachment on top of our normal commode, I could pretty much take care of myself.

While I was, you might say, indisposed, there was a loud knock at the door. Ann-Marie answered it and faced a phalanx of LA's so-called finest. There was some hurried mumbling, and before anything was clear, two beefy patrolmen were stomping around the house like one of those drug raids you see on Cops. Someone in the neighborhood had apparently reported loud shouting going on in a nearby house and the cops had picked ours. They were looking for a wife beater or — as often the case on Cops — a husband beater.

What they found, when they pulled back the curtain and glowered into the bathroom, billy clubs in hand, was me.

They stared for what seemed like an eternity, as if they had never seen a man in this pose before. They saw me as a potential criminal, not a crippled man on a toilet. It was as if they relished both their power and my indignity; I'm surprised they didn't take my wheelchair, just for fun. They left the curtain ajar, and without a word of apology to either Ann-Marie or me, walked out of the house. Their whole storm-trooper act was infuriating. It was a state-sanctioned home invasion. And I could do nothing, not even look them eyeball to eyeball and tell them to get the hell out of my house. It was more than demeaning. It was castrating.

You can only sit around a ten-by-twelve room for so long, no matter how shaky and self-conscious you are, so I started taking short treks into the social habitat I had once known so well. I tried to keep the outings short and sweet — a Super Bowl party here, a cheap Italian restaurant there — but I still felt alien and out of place. Maybe the best way to describe it is that you feel like the only black guy at the all-white Kiwanis Club meeting. You've been invited to join the club and help out with the upcoming paper drive, but you're a curiosity — a little intimidating, even scary, to some; awkward to be around for others. Everybody is walking on egg shells not to offend you. They all want you to know that they think you're perfectly normal. The black Kiwanian finds himself in a lot of overly friendly conversations about pro football, Mike Tyson, and "real" Southern barbeque. The guy in the wheelchair finds himself in a lot of overly friendly conversations about Christopher Reeve, driving with hand controls, the unfairness of life, and hospital food.

The continuum of response, I soon learned, went from people who are kind to you to people who are way too kind. On my first trip to the supermarket, a nice old man approached me and handed me a lollipop, just to "put a smile on my face." He left without giving anyone else a lollipop, so I knew I was special.

My most abrupt encounter with the overly kind came a few months later. I had gotten a writing job with the meta-magicians Penn and Teller in Las Vegas; this was really stepping out into the untamed human jungle. I set out on a Sunday morning to grab a cup of coffee at the local Starbucks. Las Vegas, at least physically, is the most user-friendly place on earth for handicapped people. Every hotel and hot spot, having been built in the last two weeks or so, is replete with ramps, hand rails, elevators, escalators, you name it. Plus, Las Vegas caters to older Americans in wheelchairs who are bored with the grandkids and ready to blow their pension on a roll of the dice. There are special blackjack tables, slots, and other games designed especially for people in wheelchairs. They love crips in Vegas.

Anyway, I tooled up to this Starbucks on a bright Sunday morning, and there was a line out to the sidewalk. The night before, there had been a big concert by the now-defunct music group, Phish — a laid back, Grateful Dead-style dope-rock band with a dedicated following of young, chemically altered Phish-heads. One of those heads, no doubt stoned and awake since the Thursday before, stumbled up behind me, took one look at my chair, and went into action. He grabbed the chair handles, started pushing people out of the way, and maneuvered me right up to the front of the line. There, he announced to the world that he was buying me a cup of coffee for "everything this guy did for us in Nam, man. This guy, man, I mean, he took a bullet or something, you know ... " His speech dribbled off incoherently, but everyone got the point. To him, I was a war hero. I fit the picture: I was in the right age group for Vietnam, was dressed like someone on a government pension, and had the wheelchair to back up my Purple Heart. I tried to tell him otherwise, but he wasn't listening. He was probably hallucinating his own rendition of the sappy Lee Greenwood anthem, "I'm Proud to Be an American."

I awkwardly extricated myself from this jam by convincing the guy that "Man, I don't take handouts, man, I always buy my own coffee, man, it's a thing with me, you with me, bro?" He could dig where I was coming from and left me alone. However misguided, this addled patriot gave me a good idea: go down the Army-Navy store, pick out some camouflage gear, put a red-white-and-blue schemata on my head, and I'd never have to pay for a Starbucks again.

Books Featured In This Story

The Best Seat in the House
The Best Seat in the House

How I Woke Up One Tuesday and Was Paralyzed for Life

by Allen Rucker

Hardcover, 230 pages | purchase

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