California Literary Review

Sudden Onset

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March 25th, 2007 at 10:27 pm

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[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.

  • http://calitreview.com/11 mic

    Dear Bloggers,
    I read all of your comments and sympathize with you all. This is an unpredicable disease that affects our lives and those of the family in many difficult ways. Hopefully, we all have strong family support and good family values and belief in God to help us through the tough times. I was diagnosed with TM just about 4 weeks ago, and have the arm and leg weakness, strange sensations (hot, cold, crawling) and waist banding from time to time, dizziness and leg spasms. I feel lucky its not worse so far. Try to remain positive, with a strong positive mind and outlook and place trust in God, for he will cure all ills. And pray, as I shall be praying for all of us.
    Mike

  • Suzanne

    Mar 09, after 3 months of leg weakness, pins and needles, muscle twitches, electric shock sensations, back spasms etc my Neurologist suggested inflammatory myleopathy. I eventually regained my strength to walk through physio exercises every day.
    Have experienced a relapse, possibly the weakness and symptoms are worse than before but through the physio I feel stronger although can still only shuffle everywhere but certainly better than being completely paralysed.
    GP suggested recurrent TM and neurologist has not ruled it out so back to all the tests (which were all clear last time except the VEP which was abnormal). Will return to work in wheelchair for the time being and work towards regaining my feet again – I’ve done it once so am positive can do it again.
    Would be interested to know if anyone else has experienced this recurrent trend which defies tests.

  • http://iwearblue.com Jaclyn

    I was really taken by the following paragraph, “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.”

    My mother was diagnosed with Transverse Myelitis at T8 on March, 2011. My family spent a week in an Intensive Care Unit worrying about what was happening to her, “How long would this last”, would it get worse” and “would it ascend”… While the diagnosis was a relief from the standpoint of now we can “start to cope”, TM is such a drastic, life changing disorder.

    I wish all of those living with TM and all of the families affected by TM STRENGTH. Thank you for sharing your stories.

  • Rick

    I have been diag with t/m late May 2011 . this page sounds like reliving my life. I spent 2months in hospital not standing to now walking with a cane.

    Only advice is never give up, move what ever you can as much as you can. The sooner and the more you fight gravity the better.

    This will only keep you down if you let it. So don,t !

    Good luck to all

  • pat

    Iwas diagnosed 3 years ago with TM.I was given pain meds,steroids,all kinds of meds.I suffered chest pains some paralysis u name it.The first hospital I went to was very rude and told me I had had a panic attack.Thank GOD the next hospital new something was wrong.Iwent through physical and occupational therapy.Iwas unable to work and soon lost my job due to physical limitations.I still suffer with spasms,tingling in my hands and arms.On top of that I now suffer also with diabetes and high bp.Will the numbness and pain ever go away?I do not qualify for disability so Iam trying to be somewhat optpmistic abt.my future.But it is hard since I have mainly done physical wrk for the past 20 years.

  • ann

    Rick, my 42 year old brother was diagnosed at the end of Feb. 2011 and he is competely paralyzed from the chest down. I’m so glad to hear you now walk with a cane and am curious how you were treated??

    My brother spent about 4-5 weeks in the hospital with 5 days steriod treatment and 7 plasma exhanges without any improvment. He went to a rehabilitation hospital for 2 months to learn how to live like this. He is currently having remicade infusions, but has not seen any improvement.

    Fortunately, he is amazingly strong and is back to work, but is confined to a wheel chair and deals with the bowel and bladder issues and nerve pain.

    Would you mind sharing what treatments you received and where your spine was impacted?

    Thank you and I wish you all the best with continued improvement! I love your attitude!

  • Joe

    I have an Idiopathic diagnosis of TM and that’s still not completely confirmed, but the only thing that makes sense at this point. Chronic pain began April 2010, but did not cause immediate paralysis and have yet to experience that. Just some attacks that felt like my spine was being crushed and uncontrollable leg stiffness / spasms. Just pain, tingling and crushing, mainly on lower part of the body; achy and arthritic feeling in upper body with shooting pain sometimes. Most of pain is on left side. Every blood test has been done, lumbar extraction (spinal tap), MRIs, etc. before this possible diagnosis was given in Oct-2011. I have been on pain meds almost the entire time and finally convinced a doctor to prescribe antibiotics. I noticed immediate help and could lower the amount of pain meds I was taking each day and as long as I keep taking antibiotics. I am going through a period now w/o narcotic pain relief medications.

    I have also pushed to try the cyclophosphamide treatment and haven’t gotten anywhere with being able to at least try it. I’ve had steroids oral, spine injections and infusions w/ no help or benefit. A Legion was found at C-4, but ~6 months after symptoms started, and was no longer there ~1 year after initial symptoms. I was wasting time with family doctor and orthopedic dr. until 1 noticed the neurological symptoms.

  • chandan kumar jana from INDIA

    I have been suffering from TM from 2003 when I was just 21yrs. It was a sudden on-set and no improvement has happened. I am leading a very painful life bedridden or wheel-chair bound. I do not understand how it will end and when?

  • Ellie from Scotland.

    I developed TM last year, I am fortunate that although it is in my neck it is not as severe as others and I still have some use from my limbs. As it was not diagnosed properly in the first place, initial treatment was delayed which is so essential for this condition. For pain management I take Gabapentin which does take the edge off the nerve pains. I read through most of the comments and empathise with so many. This condition is sudden and harsh and I had never heard of it till I got it so anything that increases awareness to improve initial treatments is wonderful.

  • Andy

    I read your story with a headfull of dizzying memories and it has to be said, mixed emotions. On May 13th 2003 I awoke at 06:30 as normal, having left my girlfriends house the previous night feeling agitated and restless with twitchy legs. I put it down to a hard day of cutting ivy from a fence and being overtired from lifting heavy filing cabinets during an office move. My first concern was my inability to pee, but I thought that would rectify itself in a few minutes – it never did!

    I walked to my local GP’s, to be greeted with, go home, run a tap and shut your eyes. That should cure it. So I walked home, ran a tap, shut my eyes and guess what – nothing, zilch, nada. By now I looked 3 months pregnant, but no aches or pains and no numbness or tingles that I can recall.

    3 hours later and 27 (yes you read that right – 27) phone calls to my GP, NHS helpline, A&E and finally 999 the ambulance arrived. I walked into the ambulance and walked into A&E. 20 minutes later, I couldn’t walk, feel my legs, feel any pin pricks or hot and cold, had no bladder function and various other complications.
    I was given an emergency MRI and CT scan, and told the results at 7:00pm that day. In 13 hours I had gone from a fit and healthy bodybuilder to bedridden, scared and useless. I was told I would never regain the use of my legs due to the severity of the TM and the rate at which it had occurred. My reaction? – nobody tells me I can’t do something.
    They pumped me full of steroids and anti-inflammatories, anti-biotics and painkillers for 4 long weeks. I went from 16 stones to 12.5 stones, but I never lost hope and after 8 weeks I went home – on crutches!!
    Today, I can walk, even run (but not in a straight line). I still have bladder issues (controlled by Vesicare), erectile disfunction (god bless Viagra) and some bowel issues, but I beat the wheelchair!
    More research needs to be done into this terrible disease and its manifestation and long term effects. The Transverse Myelitis Association are fabulous and I could never thank them enough for their help in the dark times when the world held little for me.
    I will never forget the words my professor said to me at my bedside when I asked, 2 weeks into TM, if I would ever walk again. He said simply ” How much do you want to Andrew, because we are doing all we know how to do. The rest is up to you, if you want to walk then walk, if you don’t – then don’t.
    Thank you Professor Clark!!!

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