My TM Story by Rick Telander

I felt a sharp pain in my neck, just above my shoulders.  It radiated out toward my arms, which were occasionally tingling in a very odd way that made me feel as if I were losing control of them. But I felt pretty sure the pain was from nothing unusual. 

My neck had often bothered me—from football collisions, riding my bicycle, lifting weights, or just being hunched over a laptop for hours on end in our modern world of digital immersion. Or, I supposed, simply from the stress of daily life.  What I thought I needed more than anything at that moment was to have my neck “adjusted’’—to get it yanked or cracked back into form. 

It was dinnertime, but I told my wife, Judy, I didn’t feel like eating, that I was having neck pain that was just getting worse and worse.  I lay on the carpet in our family room and asked my youngest daughter, Robin, if she’d rub the back of my neck for me.  She started to do that, but the pressure made the pain worse.  There was no position I could get into that made my neck feel better. 

I was thinking disc issue, something out of whack that needed to be jarred back into place.  Somebody could just yank my head one way or the other, the way chiropractors do, and I’d be fine.  I have a college football buddy, an outside linebacker, whom I’d recently spoken with on the phone, and he told me how one day while driving near his office in Arizona, his arms had gone numb, his neck hurt and he lay down in his car and was barely able to call his doctor.  His doctor freaked.  

“Don’t move! You’ve got a herniated disc!’’ the doctor yelled. 

The doctor called an ambulance, and my buddy was carefully taken to the hospital, had neck surgery, rehabbed, and now he’s basically fine. I was sure my problem was like my pal’s but a lot less significant. He was a linebacker in college, and he got blasted pretty good. I was one of those man-to-man defensive backs, spending most of my time running with wide receivers all over the field.  I took some solid blows, but a columnist buddy of mine always describes my college play of yore—which he never saw, by the way–as this young man, hair flowing beneath his helmet, joyfully “prancing over the greensward with a butterfly net in hand.’’ 

But my arms were feeling really heavy now, with a hard to describe “deadness.’’  There was no humor here.  What was going on? 

The neck pain was increasing. Judy called my doctor.  I spoke to him while on the floor.  He told me a neck brace from Walgreen’s might help. Then before we finished, he ordered some prednisone tablets for me.  Judy got the pills and the brace, but neither seemed to help.  I was in bad pain, and, oddest of all, both triceps had stopped working.  My biceps were fine.  I could lift the phone up to my head as I lay there, but I couldn’t push it away. I sat up and let my arm drop. I experimented a couple times.  I could lift; I couldn’t push. I was getting scared. 

But still I felt it was likely a simple neck issue, a spasm or strain or something of the like.  Then the pain ratcheted upward.  It came in waves. It surged in, then receded, then rushed in harder. I could gut this out.  I’d dealt with pain in my life.  It was Friday night.  Maybe I should just take a sleeping pill of some kind and go to bed and see if I wasn’t better in the morning.   

But then my doctor called back.  I guess I had butt-called him while lying on the carpet, and he was returning the call.  I told him I was hurting, that my triceps were useless. 

“I think you should go to the emergency room,’’ he said. “Now.’’ 

Judy drove me there, maybe ten minutes away, and as she dropped me off so she could park the car, I stumbled forward like a zombie.  The emergency room canopy was only twenty yards ahead, but it seemed like a mile.  An old lady was walking slowly toward the entrance from the other side of the parking lot.  She was moving faster than I, but not by much.  I eyed her pace.  She was beating me.  Then I pulled ahead.  She stopped to lean over a trash bin, got sick into it. Swine flu, I said to myself.  It was everywhere during that fall of 2009. I knew she had it. That’s what I told myself.  Dear God, I also said, I have to beat her to the check-in counter.  I don’t know if my mind was working right, but I envisioned myself catching the disease from the old lady and succumbing there on the pavement.   

But I hurt too much to walk.  I was under the bright lights of the ambulance entrance, so close, and I dropped onto a bench.  I lay down on my back, not sure I could go any farther.  Where was the old lady? I looked up—she had made it to the automatic glass doors.  She was going in.  But I no longer cared.  It dawned on me for the first time that maybe something was seriously wrong with me. 

The pain subsided for a moment and I staggered inside.  Judy was soon there, filling out forms.  It gets a little blurry at this point, but I know in minutes I was in a room with a curtain and dials and machines and somebody asked me to move my legs, and I couldn’t.  One at a time I tried.  I looked at one, then the other.  Strain. Puff. Nothing. They didn’t hurt; they weren’t numb.  They were just dead.  I remember finding this strangely, bizarrely amusing.  What the hell?  I’d just walked into this place—well, shuffled and lurched—and now my legs didn’t work at all?  Like, boom. Like that fast? I thought it was, if not goofy, at least quite interesting, a new adventure, something to talk to buddies about when I got out, after I got my neck adjusted and all this nonsense came to an end. I wasn’t thinking straight, whether because of the strangeness of the moment or the fire in my spinal cord or the shock-like combination of both. 

Oh, if I’d only known what was really happening.  

Soon there were IV’s with anti-inflammatories and painkillers and I don’t know what else dripping in my arm.  It gets blurry. Then I was in an ambulance, lying backward on a stretcher, looking out the rear window at the rain-streaked highway flying behind me, oddly comfortable, trying to make light with the attendant who was sitting next to me.  She smiled but didn’t say much.  It was late, after midnight.  We were headed south to Evanston Hospital, almost a half hour away, a bigger place with more neurological experts. Somebody must have told me what was going on.  But I see much of this as in a dream. A blur of colors, sounds, activities.  Out of my hands.   I felt detached.  I was there, but I was watching from a distance. 

The pain started to subside, because of the drip, but the haunting feeling of being somehow in more trouble than I could comprehend abruptly rolled over me; I was a victim of something that was so outside my realm of life experience that it might as well have been an invasion of mini-aliens parachuting into my spinal column, drifting through my muscle system and setting up camp. 

At Evanston Hospital things began happening fast. There was an dismal spinal tap in which the metal table I was on was tilted until I couldn’t support myself, and I began yelling at the doctor that how the hell was I supposed to stand in this position when one of the main reasons I was on this table getting a needle stuck in my lower spine in the first place was because my legs didn’t work?  He said nothing that I recall, and I frantically held myself upright with my hands gripping the top of the table, my body stretched and useless, like a dangling mountain climber.  Yet my biceps, trusty muscles, never stopped working. I have no idea why. 

Then there were hours and hours in MRI and CAT-scan tubes.  At one point I said I couldn’t take any more, give me morphine, knock me out, do something. My daughter Robin and a nurse I thought was named Peachy held my hands as I drifted in and out of consciousness. One session alone was three hours. 

The verdict: transverse myelitis.  Never heard of it.  But I knew the full name of the disease that had terrified kids and parents of my generation and was called polio for short: polio myelitis.  And I knew kids, now older adults, who had become paralyzed and had withered legs or were in wheelchairs because of that viral disease that was basically wiped out one day by Sabin and Salk and their shots and sugar cubes.  That myelitis part meant something.  In time I would look it up: inflammation of the myelin, the protective sheathing around the spinal cord and its nerves.  

My doctor and that random, unintended butt-call which he returned had likely saved me from becoming a paraplegic, or worse.  I might have passed out that night, hung on for several more hours, been the tough guy, and been transported to the hospital the next morning unable to move anything.  With transverse myelitis every minute counts.  The prednisone pills and the quick IVs full of anti-inflammatory steroids had at least slowed the fire in my spine to a smolder and halted what could have become a smoking waste. 

The swift diagnosis was key.  My doctor, internist Todd Newberger, thought at first it might be an old football neck injury, as I did, but then he thought something like Guillen-Barre syndrome, and that went out the window when I described more of my symptoms.  He quickly guessed TM. Since almost nobody gets transverse myelitis—what is it, two-three in a million?—how can any doctor really know it when he sees it?  Good training, I guess. Preparation. An open mind. Intelligence. Luck. May God bless your soul, Dr. Newberger. 

I was in intensive care for four days, and when I got out I walked with a cane and my hands didn’t work well.  My triceps had shriveled noticeably.  In four days. Much of my body tingled. There was a swathe around my belly where I could feel almost nothing, and my sense of hot and cold had vanished in much of the skin of my arms, legs and torso.  Before I lurched into a shower I had to let some water run on my shoulder or face to determine if it was scalding or freezing or somewhere in between. 

Four weeks after I got out of the hospital I was hit with an almost intolerable pain across my chest from shoulder joint to shoulder joint.  My prescribed prednisone level had been dropped too low too fast—I wasn’t as well as my aging and relatively unconcerned neurologist thought I should be–and the fire of TM had flared up from the coals.  My chest neurons were short-circuiting and they swiftly derailed pectoral muscle activity. Huge doses of prednisone stopped the insult in time, but I can no longer do a pushup or throw a ball properly. And I was a quarterback in high school. I had drop-foot in my right foot, and both my thighs had lost about two inches in circumference.  My neck still hurt, too, and the only way I could sleep was with a thick neck brace wrapped around my neck.  The prednisone–80 to 100 mgs. a day–I knew was making me crazy.   

Prednisone is a corticosteroid that more or less overwhelms your normal immune system responses, reduces inflammation, and messes your head up in the process.  My mind ran in wild thought patterns and at night I typed incoherent screenplays about nothing on loud typewriters in my sleeping brain. Static was everywhere. I had itches on my skin that could not be solved by scratching.  Where were those itches?  What was an itch? Have you ever thought about that?  Don’t. My hearing had changed, too, as had my startle reflex.  Sudden loud noises put me through the roof.  Sharp sounds, like a dish breaking or a shrill horn, almost unhinged me.  Both my feet had partially collapsed, their muscles weakened, and even my sense of time was altered.  Fatigue like I’d seldom known could hit me at any moment.  And my brain ran unobstructed from normal barriers. Sometimes I would start talking and I found I couldn’t stop.  I would marvel at this, be outside myself, listening to my blather, confounded and embarrassed by it, and still I couldn’t stop it.   

I craved sunlight.  Winter was approaching in full tilt and I needed a real sun. I needed sun rays like I never had.  It was an obsession. I wanted to move to Florida, to Costa Rica, to Brazil.  I wanted to sell our house, fast.  I had to take a lot of prescribed Ambien, double or triple what would be needed for a normal person, every night just to sleep, and I was prescribed Lexapro, an antidepressant, which I was dead set against, to stop the chattering in my brain.  But I took it, and the noise partly subsided. I was exhausted in the mornings, and when I did get up, I lay on the carpet in the bedroom, letting the weak Midwestern sunlight bathe my face through the window until I fell asleep again.  Sometimes I slept all through the day into the dark of afternoon. 

Worst of all, at the start, was the fact my hands could not do the things they had once done.  They were like blocks of clay, without dexterity or strength.  My hands trembled and twitched, where I had always been steady as a rock.  There were pits in each hand where my thumb muscles had atrophied.  Hyped on steroids and pain medicine and with fried nerves, I came home that first day after leaving intensive care, picked up my acoustic Washburn guitar in the living room and could not play it.  My fingers were those of a sloth’s, a statue’s.  I started crying.  It just burst from me.  A friend of the family had recently died very young from breast cancer. I cried over her death, on and on. Mentally, I was gone. 

The leg twitches and spasms were bad and kept me from falling asleep without being drugged into oblivion.  Sometimes the spasms were so strong my knees would jerk up to my chest.  Tapping my quadriceps in the middle of my thigh could make my lower leg swing out as if in a soccer kick.  Many standard reflex patterns had been short-circuited, burned down, rerouted or become dead ends. The myelitis was the same as if insulation around electrical wires had been corrupted, shaved away, charred. Random circuits had zapped out and did not work or worked inefficiently. Other systems, like the nerves hooked to my deltoids and back muscles and those trusty biceps, hadn’t been affected at all. Everything seemed to be governed by randomness. 

I went to the Mayo Clinic in January to see if there was any rhyme or reason to my TM, to see if it was maybe caused by something else like a virus or bacterium, or if—I prayed not—I had the beginnings of multiple sclerosis.  MS, after all, means multiple scarring, and I had lesions and scars on my spinal cord, odd milky patterns I had seen in the scans, pointed out to me by various neurologists the way astronomers might point out constellations in a night sky. 

I was told by the Mayo neurologist that according to my tests I either had neoplastic something-or-other or transverse myelitis.  I asked the neurologist what the neoplastic thing meant.  Cancer of the spine, he said.  We’d know in the morning.   

I went to bed that night aware I’d either likely be dead in a few months or live with remnants of the disease and the effects of this myelin fire and hopefully slowly improve. I slept okay.  In fact, I slept fine.  I had changed. In a way, I was ready for invalid life or even death.  I’d thought about it in a way I never had.  Disease focuses you.  The state can’t be approximated or wished into consideration.  It has to be real and in the moment.  It comes to you of its own volition and sits there in front of you, attentive as a close friend, waiting for a dialogue about what this brief interlude on Earth means.   

Life is so short, anyway, and I was already 60.  Age 80 or 90 was just an eyeblink away, and my four kids were in their teens or twenties, not babies or juveniles or terribly needy.  They would be sad if I died, devastated even, but I’d reassure them that my job here on earth was mostly done, even if a bit foreshortened, and they should carry on as they had before, remembering all the good stuff we’d been through together, not sweating any bad stuff, know that all had been said or hinted at or gestured in love. Nothing was unfinished. Please, please, don’t worry.   Same for Judy.  Same for all my friends and relatives and loved ones, wherever they might be. I became cool with it, whatever was coming down.  Not happy, but resigned and… calm.  

The next morning, I went back to the neurologist and he said it looked like I had transverse myelitis after all, only that–not cancer or MS, and the fire should not reoccur.  But the effects of the initial burning would be my burden to carry. And, of course, the TM possibly could reoccur, but that was unlikely. Nobody knew why it showed up; nobody knew why it left. It was a prairie fire, quick and hot. There had been the flu shot I received at the local Walgreens two weeks before the TM onset.  Was that the cause?  It could have been.  Almost anything could have been.  The only thing anyone knew for certain about the flu shot was that it preceded the transverse myelitis.  It meant A came before B.  Nothing more.  There was no provable causation, no clear relationship between the two.  Something preceding something else means nothing—we need to remember this in our daily lives—unless science proves the relationship is meaningful.  Otherwise, that pencil that fell off your desk caused the sun to set. 

Awhile back I read an online account of a young Welsh woman named Helen Fincham, who came down suddenly with transverse myelitis in the summer of 2016.  The AOL.com headline read: “Woman Wakes Up With Stiff Neck, Ends Up Paralyzed.’’  It happened when she was 21, and there apparently was no warning, no obvious cause.  She simply had awakened after sleeping in what she described as an awkward position and felt neck pain which she assumed must have been from the positioning of her head while asleep. But the pain got worse as the day went on and then spread through her body. 

“I was struggling to breathe, and, all of a sudden, I was having pains in my arm,” Finchem told the news outlet, WalesOnline. “I phoned the doctors, and the receptionist said that you need to go to hospital right now.” 

She did go and soon was diagnosed with TM.  She had it bad.  The saddest part of the story was when she broke down with the news and said, “I couldn’t even wipe my own tears.’’  As of 2019, when I read her account, she had been dependent on caregivers seven hours a day and had little ability to move about freely.  “I can move my arms enough to feed myself, but I can’t cut up food or prepare anything like that,’’ she said. 

I started writing this treatise several years ago, and many of the things I was going to mention no longer stand out to me or seem that important.  You get TM, you try to move on.  You do move on, at least figuratively.  You have to. The world doesn’t wait for you. There’s no need to go into endless detail about my disease.   But there is a sense, to me at least, that we TM folks need to share our stories, back and forth, because there is such variety, and it is indeed a lonely place to be.  We all know the unlucky numbers, the rare chance of getting TM: roll the dice a million times and it might never show up. Roll it once, and there it might be.  We’re special in that regard.  As Dr. Newberger used to tell me, “It doesn’t matter if something’s one-in-a-million, if you’re the one.’’   

For a month or two in late winter I had intravenous immunoglobulin transfusions (IVIGs) at Evanston Hospital.  I would come in every week or so, sit in a cushioned reclining chair on the fourth floor and eat graham crackers and drink apple juice like a little kid while watching TV or reading the newspapers as a bag of thick clear liquid slowly dripped into my arm.  I liked the nurse a lot and we did quite a bit of chatting.  Her first name was Maris, so we’d talk about the time I’d spent with home run king Roger Maris years before for a Sports Illustrated story, because she knew all about the guy who first hit 61 homers in a season, and she had strong opinions about baseball in general. She’d pop her head in every so often to check on me and b.s. during the three hours it took to drain the bag. 

In time another guy would join me in the room, getting hooked up to a similar drip bag.  His name was also Rick, a cool dude who had played in a rock band back in the day.  I played in a band too, and we’d go on and on about oldie songs we liked and guitar riffs and crazy rockers as if we were sitting at the local pub having a beer.   Now he had a battle with cancer going, his immune system was compromised, and the IVIG hopefully would get him get stronger.  Sometimes when Rick didn’t show up I’d spend long periods simply gazing out the window at the ramparts of Ryan Field, Northwestern University’s football stadium just a few blocks away.  When it was called Dyche Stadium it was where I toiled on fall Saturdays so long ago.  Now it’s been bulldozed for a shiny new stadium to be built on the same spot. 

Everything abruptly seemed like a before and after.  It wasn’t just time going by; it was all that came before transverse myelitis and all that would come after, like I had a demarcation in my life as precisely as the time before and after a flood.  I was always diligent about rehabbing, about strength training and trying to get back what had been taken by TM.  Being a jock most of my life had made me comfortable in gyms and around sweaty people. There was weight training, and stretching and balance drills.  I tried throwing a ball, but nope.  I tried jogging. Uh-uh.  Many things vanished forever, never to return. But in other ways I improved physically for at least two years, maybe three or more.  It’s hard to say, because even now the effects of TM can flourish and recede like a recurring weather system.  The “electric feeling’’ has never gone away, but it too ebbs and flows.  I feel like a light switch was turned on in my body and there are a few wires in the wall that have lost their insulation and are halfway shorted out.  

I fell the first time I rode a bike and tried to balance my weight on my left leg, my alleged “good’’ leg, when I stopped at an intersection.  I tried to brace my myself with my left arm but my triceps muscle wasn’t strong enough to break my slow-motion collapse, and my helmet smacked the pavement with a bang.  I wasn’t hurt, but without the helmet?  Trust me, I never get on a bike these days, even riding as slowly as I do, without a helmet securely attached to my brain bucket. Other things? The muscles in my feet have taken a hike.  Who ever thought about muscles in a foot?  I don’t mean ankle or calf.  Foot.  Their fleeing left me wobbly, prone to tipping over, and that’s how I remain.  There’s other stuff, like the crazy fatigue that hits out of nowhere.  And then there’s the fact I can never be sure these days if something is from TM or is perhaps plain old aging or some kind of combination of the two.  It’s a fact I’m not a pup anymore.  I’ve had several dogs throughout my life and have watched them get old, and sometimes I see myself following their furry decline, only at human speed, not dog years. 

Listen, friends, we all get dealt a hand in this card game called life.  It has nothing to do with what you deserve or what you had coming or who likes you or anything else. Bad luck hits. Just like good luck does.  The more we know about TM the sooner we can find palliatives, rehabs, cures. That’s for sure. And no one could thank Sandy Siegel and the people who work with him, such as the bright and delightfulful GG deFiebre, more than I. And, of course, I thank the doctors and researchers at Texas Southwestern University and John Hopkins University and elswhere who have made rare neuroimmune disorders their personal mountains to climb and someday conquer. 

I feel so sorry for the infants, the children, the poverty-stricken, the underprivileged, he ones without family or friends, those who suffer the most when they are diagnosed with one of these disorders.  It’s said we grow stronger at our broken parts.  Sometimes I wonder about that. But I never doubt for a second that we’re all on this big Earth together. And when one of us mends or heals or finds joy, especially after great setback, we all sing along.