[Editor's note: In 1996 at the age of fifty-one, Hollywood writer Allen Rucker was struck by a rare disorder - transverse myelitis - that left him a paraplegic. The following excerpt is from his autobiography The Best Seat in the House: How I Woke Up One Tuesday and Was Paralyzed for Life.]

Along with many deluded also-rans in Hollywood, I kept thinking I had a showbiz career, albeit a lowly one, but even that was largely a fiction. TV specials, not to mention fatuous talk shows, come and go, and people who write them are equally dispensable. Some writers find a groove crafting material for particular stars and milk it for years. They are the ones whose skills match the job and you can count their number on one hand. The rest of us are often like the shows we write for–one-shots. For whatever reason–age, talent, attitude, whatever–I was easily forgotten in the let’s-try-someone-new mentality of network brainiacs.
But I was still hanging in there, with no idea of what else to do, and 1996 was actually a good year. I wrote more awards shows, including a fly-by-night, pay-you-in-the-parking-lot scam in Las Vegas called The World Travel Awards; got to work on some great live shows at the 1996 Olympics in Atlanta; and collected residuals from George & Alana. We even took a family trip to Sweden, our first vacation in eight or nine years. There was always the inevitable panic between jobs, but that went with the territory. We were doing fine.
Then, one day–December 10th, 1996–I became paralyzed. Like the day Elvis died or OJ got acquitted, it’s not something that you forget. It gets stuck in there for good.
On that fateful Tuesday, I was mostly thinking about an arthroscopic procedure on my right knee that was going to happen two days hence. This small, in-office operation was important to me. It would fix some torn cartilage in my knee so that I could soon start running again after a two-month hiatus. I loved to run. I had been running almost continually since college.
I was on the bed, reading an old issue of the New Yorker, and nodding out, when my legs suddenly started aching and tingling at the same time. The sensation began in the back of the thighs and moved to the waist. Then a sharp pain hit my midsection. It was excruciating but also diffuse, inexact, and short-lived. Imagine being branded by an around-the-waist branding iron.
After that sharp pain came and went, my first reaction was a general uneasiness, which forced me to move around to outmaneuver the now intermittent numbness and tingling. I got up from the bed and walked around the room, not weak or wobbly but just bothered to distraction by a discomfort that I couldn’t describe, even to myself. I tried to relieve my physical uneasiness by sitting on the couch and putting my legs over the armrests. That didn’t work. Then, thinking I had strained a back muscle or experienced a weird back spasm, I lay on the floor. That didn’t do anything, either. I was no longer in any pain, but I was in an odd state of restlessness and apprehension. I knew this was virgin physiological territory but didn’t announce it. Nobody likes a whiner who can’t describe what the hell he’s whining about.
My wife, Ann-Marie, came in after a hard day of teaching and offered an instant, ready-made diagnosis, partially predicated, I’m sure, on the fact that I was lying in bed on a weekday afternoon, didn’t have a job, and didn’t seem particularly sick. The aches and pains associated with the flu, she said. It sounded right. I’d thought of this myself, later to realize that this was part of a mutual-denial game she and I had perfected after some very rough years. “Nothing’s wrong. Everything’s fine. Not to worry.” I headed for a warm bath, anxious to soak my way through my condition.
The bath just increased the irritating tingling, and I had an overwhelming urge to keep moving. Later I thought: Was this the healthy nerves in my back telling the damaged nerves in my legs, “Hey, you only have a few minutes to keep functioning, you idiots, so don’t sit around a bathtub. Walk! Move! Tap-dance!” I kept getting weaker. Out of the bath, I wobbled a bit and headed back to bed. Call your doctor, Ann-Marie said, if that will make you feel better. I did, and he wasn’t in, but one of his associates had the same diagnosis as Ann-Marie: a nasty flu virus of some kind. Take two aspirin and a warm bath. I didn’t tell him I had already tried the bath treatment. I was sure I was overreacting and if I said anything hysterical, I would sound like a fool. Also, being from the American Midwest, I hated to be sick. In general, when people get sick, so my Calvinist forbearers taught me, it’s a sign of weakness or laziness, or a cry for attention. When people make themselves sick–which I thought was exactly what I was doing with all my consternation–they are gutless bellyachers of the first order and should be made to work overtime.
So Ann-Marie left to go to the dentist, I took two aspirin and got back in bed. The progression then began a fierce descent. One more trip to the same bath, a good fifteen seconds of immersion, and out in a flash, weakened, pained, and by now good and scared. I wobbled across the bathroom like a drunken fraternity pledge, grabbing the sink for support. Boy, some flu, I thought–the throat virus has landed in the inner ear, I figured, and upended my equilibrium. I’d better get back to the sack and stay there.
It took me another three or four minutes to navigate the fifteen or twenty feet to the bed, reeling and lurching the whole way. I made it back and lay there for a few minutes, almost in shock. The initial pain and irritation were long gone. Now I felt something much stronger: a diminution of movement. The problem during the trip across the bedroom was not just lack of balance, it was that I couldn’t pick my legs up and put them down without the effort it would take a normal person to walk through a vat of molasses. I still had feeling in my legs–if I pinched one, it hurt–but any motor response was slipping fast. Getting a leg from floor to bed was like picking up a thirty-pound deadweight, an experience that was soon to become as ordinary as sitting in a rolling chair. At the time, it felt like a slow death, from the soles of the feet upward.
Two more minutes and I decided more aspirin and more movement, more precious movement. I got up, hands on the bureau, and I flopped to the ground. I was now in a complete state of panic. My entire lower body had turned into a soft, unresponsive mass.
I crawled to the phone and called the doctor back. A half a dozen words out of my mouth, he ordered me to call 911. I did as told, still entertaining the belief that I was making way too much of this and, boy, would this be embarrassing if it turned out that I was just dizzy and weak from the flu. I called Ann-Marie at her dentist, and the dentist didn’t think I was overreacting. It was in my voice.
From that first tingling in bed to calling 911 was an hour and a half. Sudden onset, they call it.
Our eight-year old son, Max, arrived home from playing after-school basketball to hear my shouting. He located Ann-Marie’s eighty-five-year-old Swedish mother, Agda, who lived with us at the time. She helped me get on some pants just as two fire department paramedics burst in, ready for cardiac intervention. They were beefy action-hero types in clean, starched uniforms. My rescuers, so to speak, saw me lying there, crying but cogent, quickly assessed the situation, and essentially laughed in my face. They thought I was just trying to BS my way into a free ride to the hospital.
Imagine Hans and Frans, the dumb weightlifters from Saturday Night Live. Crossing their massive arms and dropping their portable defibrillator, their collective on-site demeanor went from “We’re in charge here!” to “What the holy heck is this?” This was not part of their training–a grown man in bed with weak legs. “This must be, like, a not very sick person,” all four brain cells discharged at once. “This must be a phony baloney!”
On top of being instantly paralyzed, I was now being dissed and demeaned. They thought I was having a panic attack or maybe a muscle spasm that any fool could walk off. I wasn’t comatose or writhing in pain. I wasn’t calling out to God or turning blue from oxygen deprivation, so to Ponch and Larry, I must be faking it, a whiner, a hypochondriac, a girly-man. I had no idea what was going on. I could barely describe the symptoms, let alone defend myself against their stony stares. I was still holding the phone when they arrived, trying to explain the situation to Ann-Marie. In tears, I told her I couldn’t move my legs or feet. “Yes, you can!” Ponch shouted out like a playground fourth-grader, “You can move your toes. I saw them move!”
Then Larry started lecturing me. “Hey, you know while we stand here talking to you, man, some old guy is probably dying of a cardiac seizure, man, someone who really needs us, so, hey, don’t waste our time, okay…” They then beckoned me to get up so that they could help me down the stairs. They figured Ann-Marie could take me to the hospital. They had more important things to do.
I tried to stand and again fell to the floor, whimpering. If I was faking it, I was doing an award-winning job. They had no choice but to take over. By the time they carried me down the steps like a 180-pound Baby Huey, my sense of self, fragile as it was, had vanished like the wind. This wasn’t like being in a nasty car wreck or breaking your leg and being helped off the ski slope. It was closer to an acid trip–everything was warped and screwy. “There must be some way out of here, said the joker to the thief.”
Max stood to the side and watched this all in silence. He kept saying, “Don’t worry, Dad, you’ll be fine,” but he was clearly as traumatized as I was. His recollection was that I was as scared as he’d ever seen me. “It’s like when I wake you after a nap nowadays,” he described it, “and you don’t know where you are–you had a weird, astonished, dazed look, your eyes wide open and your mouth slightly open.” Ann-Marie, her mouth bloated with Novocain, arrived just as they were wheeling me out the door. She confirmed that my eyes were “wide and terrified.”
The rescue unit loaded me into their ambulance and dropped me off at the nearest emergency room, at the now defunct Century City Hospital, saying no more than, “Something’s wrong with his legs or something.” Ann-Marie followed. My last trip to the hospital, at age fifteen, had been for a burst appendix that ruined my high school football career. This trip had every prospect of ruining my life.
The greatest fear among the attending ER staff was what is known as an “ascending” neurological disorder: that is, one that ascends up the body and cuts off nerve response to the heart or lungs and thus induces cardiac or respiratory arrest. Guillain-Barre syndrome, which is something like polio, tends to do this. Another possibility was some kind of stroke. Now, that’s a word that will send chills down your spine even when you can’t feel your spine. Or it could be a “presentation,” in doctor talk, that signals the onset of MS, or ALS (Lou Gehrig’s Disease), or God knows what.
I remember lying on that steel slab in the ER for an interminable period of time, waiting for something else to happen. My own doctor was on his way, and the staff didn’t really know what to do in the absence of some diagnosis that none of them was prepared or qualified to give. I was in no pain and, really, no discomfort, just the numb, creepy, impotent feeling of not being able to move my legs or wiggle my toes. I knew that if I went into cardiac or pulmonary arrest, these people could handle it. No horrible images of death or disease floated around my head. If the bottom half of my body weren’t just lying there like a lifeless bag of flesh, I would have felt fine.




September 21st, 2007 at 2:33 pm
Email is 4wallis@comcast.net
I was stricken like you on Jan 5 2006. I had sudden onset TM but mine started in my chest area and worked it way down.At 7pm i had pain in my back and by 11pm i was paralized from the upper chest down to my toes. I had no problems with anyone until i got to the hospital because i was have major discomfort in my chest which ofcourse was my paralizes setting in. But when i got to the hospital and they saw it wasnt my heart then things changes. I was no longer a priority and i laid there watching my legs go lifeless. I kept telling everyone it was my back but the ER Dr. i had just thought it was a reaction from not drinking enough that night–I was having 2-3 drinks every night at that time–she had 2 big guys come in and try to get me out of bed and i did just what you did and fell to the floor. At that time they started to take me serious. My wife and i heard the ER Dr tell the guy that came to get me up that i just needed the help to get up and go home and have a drink and this would pass. She had also tried to sit me up earlier and since i couldnt do it she then put her hand behind my back and lifted me up and pulling a muscle in my hip. It took them 4 days in the hospital to determine i had TM. After that i got the best care available. I am imporving but at a slow rate. Feel free to contact me as i have not been able to find someone who has experienced the Same TM as i have.
Thank You
Dave Wallis
December 26th, 2007 at 9:24 am
I had a similar experience June 1,1999. Mine started as a “twinge” in my neck almost as if I had pinched a nerve. My boyfriend had to practically carry me into the ER about 45 minute later where they came in after several hours of leaving my lay there and told me I could get up and go home. My discharge papers were all ready. They told me it was a neurological response to something emotionally traumatic that must have happened to me. I actually remember the nurse being irritated that I was refusing to get up. When she finally realize that I wasn’t faking, they took me seriously. I was transferred to a different hospital where I spent 3 weeks in intense physical and occupational therapy. In that time I went from not being able to move my left side from the neck down to walking with a walker. After a few weeks of out patient therapy I started getting around with a cane. Now almost 8 years later I am back to work and leading a somewhat normal life. I know that I am very fortunate that I am able to walk again-sometimes even without my cane. I know I will never be the same person I was 8 years ago but in some ways it has made me stronger. You never get more than you can handle-I truly believe this.
January 7th, 2008 at 5:14 pm
My 15 year old son was stricken on June 15, 2004 and it recurred on December 27, 2007 at the age of 19. He was an active, athletic teenager. His back began hurting a few days before the paralysis finally took over. The tingling and numbness started on his left leg and moved up to his chest and then down his right leg. He was at a swimming pool and had been feeling “wrong” all day. He was wobbly and laid out for several minutes. When he tried to get up, he just kept falling back down. We called an ambulance and the paramedics thought he was just dehydrated. Several hours later in the ER, a neurologist confirmed TM. He is a T6 paraplegic. He can feel his legs, but he can’t walk anymore. I thank God my son is still here and thriving in spite of the paralysis.
January 11th, 2008 at 9:09 pm
One of my cousins who got TM last year around March 1st week died this January 2008. He suffered a lot and he was bedridden. He died peacefully in the hospital. He was just 32. He had bedsores that aggravated the problem as he was a diabetic too.
January 18th, 2008 at 2:37 pm
My dog was stricken with this (I know, it is not the same), but it is great to hear words describe the symptoms, and hear, for the most part, there is not pain. It is hard to see her in this state - alert, responsive, with absolutely no connection going from her brain to her limbs. The doc says to give her more time to heal (she has been this way for about a week), but at what point do you make the call? Humans can understand why their limbs don’t work - a dog can’t.
February 6th, 2008 at 8:43 pm
i had tm march 2007,i went to work with my siter sometime around 6pm on a friday,then i started feeling numbness around right side of my back within minuts traveled to belly roght side. then traveled to my right leg,and then stated vibrating and tingling, then my siter took me me to the er,they said the surgeon hit a nerve during suregery 2 weeks prior,so they sent me home, next day both legs numb and very high sentsitive to little touch,tingling…. then called my doctor on mond, she hooked me up with a neorologist,he says its something on my back,the ordered and mri urgent sameday.its was awfull inside mri,could not stop moving my legs , so much shooting pain, pins needles pain.so the results comes. i had tm.they transfered me to a bigger hospital where they were treating the sypmtons, now i feel better im 25 now. walk an live almost normally,but still have some pain on my right foot.
February 12th, 2008 at 9:30 pm
hi fabio,
u r very lucky that u can walk almost normally.can u pls tell me what treatment u get in hospital for TM,i am suffering from TM since may 2007 and till now i havenot recived any treatment.life is so difficult to live lving with t.m.so please help me and write whats are the medicing u got for ur T.m.
thanks
March 10th, 2008 at 10:48 am
I believe my son, now 2 1/2, has transverse myelitis. The doctors call him their “mystery patient” because they don’t want to admit that his 6 month immunizations left him paralysed the day after he received them. Only now, 2 1/2 years later are the mentioning maybe it was transverse myelitis since he is not walking indepedently and they have no other diagnosis to blame it on. Anyone aware of other children diagnosed w/ TM after immunizations?
March 18th, 2008 at 10:31 am
SUU,
I was diagnosed with TM October 2007. My neurologist treated me with 1000 mg of steriods (I forget the exact name) via IV for five days and then a pregnizone taper treatment for two weeks. I started feeling 100% better by the second day of steriod treatment. I was able to start walking again and have continued to recover to this day. Occasionally my back will be sore from day to day, I just hope it is not another onset of TM.
May 2nd, 2008 at 11:00 am
In 2005 after Actute Bronchitis followed by a Kidney infection I began having a warm tingling feeling down my spine leaving my legs weak for a few minutes but nothing permanent, this happened 3 times between March and Dec 2005 alway first thing in the morning. In Dec 2005 instead of having weakness for a few minutess I was left with permanent weakness in my legs. My Dr subscribed a seven day dose of Prednesone and an MRI. The MRI showed slight bulging at disk L11-L12 and was sent to physical therapy. By the end of Jan 06 I was walking with a cane.
Then Feb 16 I got out of bed and fell straight to the ground and could not get up. I spent two weeks in the hospital having every neurological test possible as well as an MRI of my entire body. I was given medicine for muscle spasm but that was it. When I was released from the hospital I still did not have a diagnois but I could walk with help and a walker. I spent the next six months taking more test still with out a diagnois. Finally I went to the Cleveland Clinc where I was diagnoised with TM and received 1000 ML dose of steroids for 3 days in a row. This helped greatly with the weakness but not the muscle spasms. After trying several oral medications for muscle spasms I had a Baclofen Pump implanted and while my right foot is still numb and has pins and needles both are bearable. I walk mostly with a cane but can walk short distances without it. I also take mega dose of Prednisone ever 3 months to ward off any further attacks. The lessons I have learned from my experience is not to give up find another Dr if you feel yours is not helping you. Keep your medical records and a journal of what you are going through the more information a Dr has the better they are able to help you. If I had had the high doses of steroids within the first day or two I might not have had as much damage. I have learned that I had to take control of my own health records and do my own research then question the Dr on what I had learned. I feel very lucky to be able to walk and I wish you all the best.