Allen Rucker — ‘The Day I Woke Up Paralyzed’

Circa 2007

One morning, life started anew for former TV producer, author and humorist Allen Rucker. “Like the day Elvis died or O.J. was acquitted,” he says, “the Tuesday you wake up paralyzed is not a day you soon forget.” His rare condition, transverse myelitis, diagnosed more than a decade ago, is one in which the immune system mistakes the spinal chord as the enemy and attacks it. While his life as a TV producer was ending, his career as an author was just taking off. ABILITY Magazine’s Chet Cooper and Gillian Friedman, MD visited him one day recently for a lively conversation.

Gillian Friedman: I saw one of your Sopranos books at the flea market the other day.

Allen Rucker: Really? Which one?

GF: The cookbook.

AR: That book still sells. That book’s an evergreen.

GF: Have you written all of the existing books about The Sopranos?

AR: I’ve done every official Sopranos book. There are three of them. I was the official chronicler of The Sopranos.

GF: How did you get involved in writing about The Sopranos?

AR: That was a very fortuitous event in my life. I went to film school at Stanford, where I met a number of lifelong friends. One of them is David Chase, the guy who created the Sopranos. He hadn’t created the Sopranos then, but he was always fascinated with mobsters. He’s a wonderful guy, and we’ve remained friends all these years. He’s known in LA as kind of a writer’s writer. He did shows like Northern Exposure and I’ll Fly Away and The Rockford Files. But they weren’t his shows. He didn’t create those shows. He’d always been a producer— showrunner is what they’re called—until he got this opportunity, relatively late in his life. He had this idea about a mob guy driven crazy by his mother, and he had to go see a shrink. That’s basically the original idea. And he got that off the ground at the same time I was doing a documentary about the mob, coincidentally.

He called me up one day and said, “Do you want to write this companion book about The Sopranos?” I said, “Sure, what’s a companion book?” (laughter) I didn’t really know what it was. He gave me a lot of latitude. That’s what began this kind of creative roll. I’ve written eight books in the last six years, and that first one was what set it off.

Chet Cooper: Can you tell me more about the books?

AR: I’ve written three books on The Sopranos. One of them was the original book called The Sopranos: A Family History, which is kind of a faux history of a faux mob family. It’s as if I found all these records of a family from some second-rate crime reporter and put them all together.

Then they came to me and said, “Do you want to do a book called The Sopranos Family Cookbook?” I said, “Sure, but I don’t know how to cook.” They said, “Don’t worry.” They got someone to write the recipes, and I wrote introductions to the recipes from the characters’ point of view. The cookbook is pure comedy. The big 300-pound guy is complaining about the cult of thinness that’s ruining American youth. (laughter) “It’s bad enough being young anyway, why do you have to make them young and thin?” That kind of thing. And that went through the roof. That was a big-selling book, a No.1-selling book. It’s a perfect combination: Eat and watch the show.

CC: How did you get started in the entertainment industry?

AR: For the first 10 years of my so-called career, I made documentaries with a group called TVTV. We created a group and made experimental documentaries using videotape. We didn’t make any money, that’s why we broke up. The programs became pretty wellknown and still are shown in some dark circles of the underground today.

Through TVTV, I met Martin Mull, who was my writing partner for many years. We came up with the crazy idea called The History of White People in America. Because by God, they were doing shows about roots, about black Americans, and The Godfather was about ItalianAmericans, and what about the really dull white guy in the plaid Bermuda shorts? No one’s ever done a history of him. And since we can only think back to our parents in our history, and we didn’t even know our grandparents, we thought, “Where did they come from?” “I don’t know. I think they always lived in Ohio.” (laughter) So we did this silly thing for HBO, and it led to a couple books.

CC: Did you always know you wanted to write, or did that happen over time?

AR: I think I knew that I wanted to write in high school, but it took a long, long time for it to come out. It was always a terrible struggle for me. It took me 20, 30 years to learn to write. But something told me that’s what I wanted to do. I kept doing other things: making documentaries, producing television, all kinds of things, until finally they didn’t hire me to do anything else, so I thought maybe I should learn to do this.

CC: How did you improve? Who was your coach?

AR: Basically I worked with a lot of people, starting in college or right after college, I tried to write in every single form that writing comes in: journalism, fiction—

CC: Mandarin?

AR: (laughs) I tried Mandarin. It didn’t work. I worked writing fortune cookies for a while. I came to Hollywood and tried to write sitcoms and movies and TV movies and dramas, and I wrote a lot of sketch work. I’ve written movies that HBO’s made. I’ve written sitcom pilots and sitcom shorts—I produced and co-wrote the TV series spin-off of Fast Times at Ridgemont High, the famous movie. It only lasted seven shows, because it was on the wrong network. But I tried everything.

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Over time, I realized that I’m best at writing creative nonfiction or narrative nonfiction, as opposed to historical or research nonfiction. Believe it or not, it probably took my sudden paralysis to jar me into writing in the way that I can write best.

GF: In what way?

AR: First of all, I had to keep working. I’d been earning a living as a writer in Hollywood when I became paralyzed, which was 10 years ago today, so it’s been a weird day, but it’s turning out nicely. I was a working writer with a big mortgage and a family. I had to keep working. I’d been doing a lot of specials and documentaries, that’s how I made my living. But if you operate in Hollywood and you’re not a mogul—and I know you’re surprised to know this, but I’m not a mogul, although you did see my pool. That was pretty impressive.

CC: Especially since it spelled out “mogul.”

AR: (laughter) In the tile! It’s a hustle. It’s called the Hollywood hustle. You’ve got to hustle all the time, especially if you are, like me, a freelance writer. You’ve got to go to lunches and pitch meetings and meet with people and belly up to stars, go out with producers. You’ve got to be out there hustling, keeping your name out there.

After I became paralyzed, I felt very self-conscious about hustling. If you’re in a wheelchair for the first time, would you like to roll into a meeting at CBS? You feel self-conscious as hell. You feel like an adolescent. Everybody’s looking at you. Everybody’s talking about you. Everybody sees every little thing you do. Especially if you do some bone-headed thing like back up and flip over on your back in the middle of an edit session, which has happened more than once, and everybody’s coming around and picking you up. Then they feel sorry for you, which is the worst feeling in the world. When that sort of thing happens, you don’t want to go out that much. I was 50 years old when I became paralyzed, and I didn’t know how to behave. I didn’t know what you’re supposed to do.

Plus, it was a hassle to do that after I became paralyzed. Even if I wanted to do it, it was still a hassle. I’d go to a producer’s meeting and realize that there was no elevator, so all of a sudden three guys are hauling me up the steps. It was awkward, troublesome. So writing became the obvious thing to do.

All of a sudden the Hollywood hustle’s not so much fun. It wasn’t that much fun anyway. I hated to go to pitch meetings. I hated to go to long production meetings where they go over every detail of a production, or go to casting sessions that last for days. I always thought they were a waste of time.

I began working on my book, Best Seat in the House, three days after I became paralyzed. I said, “Here’s something to write about.” (laughs)

But it wasn’t until David Chase came along and suggested writing something that straddles the line between fiction and nonfiction that I really began to write, and every time after that, when one of my books came out and did well, it just gave me that much more confidence, until finally I turned the corner. Now writing’s all I do, and all I can imagine doing. All those other things, like producing a TV show, it’s impractical.

So you find the things that you can do. You go with your strengths as opposed to fighting off your weaknesses. I know there are lots of people who’ve been paralyzed who want to play sports, or climb mountains or become dancers. I thought about it, but ballroom dancing didn’t seem like an option. It seemed to me like that was just pushing against the grain. A guy I know, a country singer who’s like a Zen philosopher, he says, “Why do you keep hitting your head against the rock? Why don’t you just go around the rock?” I never for a minute wanted to hit my head against any rocks. I just wanted to go around the rocks. And that’s what writing allowed me to do–go around the rock.

CC: It was almost that it helped you find your place. It was kismet in a sense.

AR: I don’t think things happen for a reason. I think you figure out the reason they happen after they happen. By inventing your life after an event like this happens, if you do it well, if you don’t invent a heroin-centric life or a lay-in-bed-all-day-centric life, but you try to invent something that makes you feel good about yourself, you’ll figure things out.

A really severe, life-changing event like this can have positive consequences. There are things that you mourn and never get over losing–like your legs–but there are other things that come out of it. I’m just lucky. You’re right, it was kismet, a confluence of things coming together.

This happened when I was 51 years old. I already had a long-suffering wife. We had kids. One was already in college. I already had a career, checkered as it may have been, and I had a life. I’d done a lot, so if I had been bedridden for the rest of my life, I’d still have a life to look back on.

I can’t imagine being 20 years old and this happening. Talk about being pissed. I can’t imagine just not being furious with people. But those 20-year-olds, who unless there’s a breakthrough in stem-cell research are going to have to live like this, they can take something like this and it’s an invention. It’s a creative act. “What am I gonna do now?” Try this, try that, trial and error. Those guys can make really interesting and productive lives if they figure out what they want to do, and how they want to do it, and how to go around the rock.

GF: Has your paralysis changed you as a writer?

AR: I had nothing but time after I became paralyzed. I just sat in this room that my wife, Anne Marie, created for me in this house, and part of the time I just didn’t want to leave it, I felt self-conscious, and part of the time I didn’t have any work. So I just started writing in a journal and writing to a friend in Oregon every single day. Writing, writing, writing. I wrote down everything that was on my mind. Every joke, every slight. “You can’t imagine what happened yesterday. Anne Marie put me in the corner with Grandpa at the grocery store, and he asked me, ‘Where’d you get that wheelchair, Sonny? You get it from Medicaid?’” Tales like that ended up in Best Seat in the House. So I was just writing, writing, writing, and it was a relief.

CC: How was it a relief?

AR: First of all, I didn’t have control over my legs. I didn’t have control over my bowel system. I didn’t have control over my balance. I didn’t have control over anything. But I had control over those words. I could put those words together. And the more I did it, the more control I had.

Plus, it was the easiest way to communicate with people. I was doing it every single day. And then I realized that it was great, not doing it for someone else. I was still working and doing specials, but really I was writing to respond to people, like this friend of mine in Oregon whose husband had just died. She wanted someone to vent and communicate with, just going back and forth. I was also writing journal entries, bad country songs, short stories. It was just writing to write. It was just like the guy throwing the basketballs over and over again. I don’t know if it was therapy or whatever, but it helped me get through that obvious kind of transition that you go through from being ambulatory to non-ambulatory.

GF: At what point did you decide: It’s time to create a book out of this?

AR: I’ve been working in show business for a long time, so I knew that just because I wanted to write a book about paralysis, publishers wouldn’t be lining up at the door. “A book about paralysis? We’ve never heard of such a thing! Please, send it off, here’s a check!” No. I knew I had the book in me. I thought I had a good story to tell, and that’s what it comes down to.

The reason it sold was because not only was it a book with an interesting story, a guy in midlife, blah-blahblah, but it was funny. They said, “Oh, yeah, that’s good.”

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CC: That’s hysterical subject matter for a book!

AR: It’s a no-brainer! I was just fortunate that one editor was passionate about the book. I think every sitcom, every journal, every piece of journalism, everything I’ve ever done came together in this book. So if it doesn’t do well, I’ll be really mad. (laughter)

GF: You’d been journaling for years at this point. As you went back over your entries, and put together the material for the book, was there anything you had written that surprised you on second reading?

AR: How well it was written. (laughter) It was good. I’m really glad I wrote it down, because you forget. I’m a comedy writer, and as my friend Martin Mull said, the only skill necessary to be a comedy writer is to remember everyone you’ve ever met and have no respect for any of them. I had a pretty good memory of doing that. But there are lots of moments where I really came home that day and captured it, which led me back to the experience so I could recapture it for the book.

I have transverse myelitis, which is a rare, neurological disorder of the spine. Anyway, 60 percent of people who contract transverse myelitis have some kind of recovery. Thirty-three percent of them have almost total recovery, maybe use a cane, but they can walk again. Another 33 percent have partial recovery—they use crutches or a walker, but they can move their legs. And only the lower 33 percent, only the slow kids in the class, never recover. So for the first year, we were convinced that I would be bouncing back. I’m healthy. I was in great shape. I was a runner. Everything looked good. But nothing happened.

My neurologist, God love him, although he stopped using the word “recovery” some eight months in, wanted me to discover on my own that I wasn’t going to walk again. He didn’t want to comment, for whatever reason, whatever his psychology was.

Then I went to see a famous neurologist at UCLA for a second opinion. He takes one look and he goes, “Man, you’ll never walk again. There’s not a chance of you walking. There’s not a chance of anything, unless there’s some medical breakthrough, and it’s not going to happen in your lifetime.” He was literally that blunt. He looked me right in the eye and said, “You will never walk again.”

Anyway, I went home and I wrote that down, because it was a devastating experience. If I hadn’t done that, I don’t think I would have remembered that in the same way.

GF: One of the things I really liked about Best Seat in the House was, it’s searingly honest. You’re telling all of these incredibly personal things.

AR: “Honest” is the word that keeps popping up a lot. I didn’t realize it.

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GF: Do you ever feel a little naked?

AR: It is what it is. I was obviously conscious of that when I was writing it. I tried to dance around things in a way that at least it doesn’t embarrass you when you read it. But I thought it was an absolutely crucial part of the process, and I think without it, it wouldn’t have been the same book. And I think that’s what a lot of people respond to. “My God, he told us about himself.” In the same way Joan Didion told you what it was really like to have your husband of 40 years die at dinner one night. It’s pretty painful if you read it.

That’s what that kind of nonfiction is about. The words give you a certain distance from yourself. It’s almost like you’re writing about a character named Allen Rucker. Obviously fiction writers write about themselves all the time, they just change the names. Here I didn’t change the names. It seemed to me that that’s the only way to do it. I’m glad. There’s nothing in the book where I’d go, I wish I hadn’t told them that.

CC: What kind of reader did you envision for Best Seat? Did you write it specifically for an audience of people with disabilities?

AR: I wrote the book for both disabled people, and probably for the people who are just curious, or the people who are freaked out. People get so freaked out that something like this might happen to them. How could they possibly go on? And I inevitably say, “Well, you’ll probably end up not being that homeless heroin addict that you think you will.” And they go, “Oh, no, I never could do what you do. I’d shoot myself.” They absolutely don’t believe you. And I think that’s because maybe nothing really awful has ever happened in their lives. So they’re really not aware that they are probably more resourceful in dealing with calamity than they know.

CC: Did you ask yourself, Why did this happen to me?

AR: Here’s an irony that I describe at length in the book: Only after I became disabled did I cease feeling like a victim. For my whole life, I felt like the cards were stacked against me. People wouldn’t understand me. I wasn’t from the right place. Hollywood didn’t ever get my ideas. It was just a myth you walk around with, the self-victimization myth. There are many levels of it in this culture. It’s a very popular kind of mindset here in America. Only when I was a victim did I say, “I don’t want to be thought of as a victim! I’m not a victim! I’m hanging in there. I don’t think of myself as a victim. You might think of me as one of life’s losers, but I don’t.” It took the paralysis to shake that mindset. There’s an irony for you, Chet. Put that under “Irony.” That’s true. I’m telling you, it’s true. I’m not lying.

CC: Have you become involved with the disabilityrights movement?

AR: I have friends who immediately thought, “You’ll be big in the disability-rights community, you’ll be beating on doors and that kind of stuff.” And I didn’t have that impulse. My impulse was to figure out my life as a nondisabled disabled person. I didn’t want to play the disability card in the line at the airlines. I certainly didn’t want to play it as a lifestyle.

I’ve become involved in two organizations related to the disability movement, though. I’m the co-chairman of the Writers with Disabilities Committee at the Writer’s Guild of America. I love those people and I love that. It’s an awareness thing.

There are something like 56 million disabled people in America. These people at UCLA have worked with SAG and find that the number of disabled-speaking parts on TV is like .04. There just are no disabled people on television. People say, “Well, I saw a girl that was blind six years ago.” You remember every one of them because they’re so rare. So in that sense, there’s a lot to be done in getting disabled writers out there—not to write just about disabilities, but just to write, and also to raise the awareness about disabled characters on TV.

I’m also becoming increasingly involved in an organization called the Transverse Myelitis Association. I absolutely love the guy who runs it, Sandy Siegel. He’s the most selfless man I ever met. He lives in Columbus, Ohio. He works as an accountant every day. His wife has transverse myelitis. They’re only about 34. He devotes his life to publishing a newsletter. He sits on the phone every weekend talking to people calling him from all over the country, freaked out because their husband or wife suddenly developed transverse myelitis.

I’m also involved in the Media Access Awards. I’m one of the people that comes up with ideas for the ceremony every year. I think that’s a great thing, and it’s only getting better. It should be on television. So I am involved in that way. But even though I’ve been paralyzed for 10 years, I don’t really think of myself as a disabled person. I just think of myself as a guy that got this thing. I don’t own it.

CC: Most of the disability-rights movement is about living independent of the disability. Different people are trying to promote it in different ways, whether through legislation or through specific issues dealing with a specific disability. But the bottom line is that the movement is considered a civil-rights movement.

AR: And I think there’s been a lot of success. Again, this attitude is in my new book. I’m of the attitude that it’s all either changing very radically, or is going to change. I did not become disabled in the dark ages of disability. I became disabled after the Americans with Disabilities Act. I still get ignored by some people, but at least I’m kind of middle class. I’m not poor. I don’t have to scrounge every day. People accept me. It’s fine with them. It makes some people nervous. It probably makes me more nervous than it does them, or it makes me nervous and then it makes them nervous. But you don’t see looks of horror because you’re in a wheelchair. You’re a little unusual, but not as unusual. I think the future of disability is very bright.

CC: You could ballroom dance, you just don’t want to.

AR: (laughs) You don’t want me out there doing that. But coming in where I came in, at the age that I came in, I see these things changing very quickly. There are more disabled people on television in the last few years than ever before. You watch My Name Is Earl and there are blind girls and girls with one leg. You watch Larry David’s show, Curb Your Enthusiasm, he’s getting into arguments with guys in wheelchairs in bathrooms over using the handicap stall and stuff like that.

CC: Do you think society’s image of people with disabilities is starting to improve?

AR: I really do. I think it’s just going to become more and more the fabric of life. I think because there’s someone turning 50 every seven seconds, that will increase the number of Baby Boomers dealing with disabilities, and it’s literally going to become chic.

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