A Walking Guide

by Alan S. Cowell

  They made him close his eyes and screw them up to see if they could force them open. They made him clench his teeth while they used their little hammers in a vain quest for reflexes. Close your eyes and tell me which way I’m moving your toes. Up. Up. Down. Up. Does this pinprick feel the same here as here? And here? Follow my finger with your eyes. Touch your nose then touch my fingertip. Any problems sleeping, eating, shitting, fucking? (His words, not theirs.) No, no, no and no. They sent him along to a department where physiotherapists dispensed the accoutrements of cripplehood, the badges of the unsavory order into which he had been inducted—plastic supports for enfeebled ankles, small foam collars to enable palsied hands to grip spoons or pens or toothbrushes, splints for wilting wrists unable to defy gravity.

  Among themselves, they used juju words—the membership codes of their own club—such as pronate and wrist extension and anterior horn cell; antiganglioside antibodies and conduction block and radiculopathy; innervation and distal latency; then looked at him as if to say: don’t you bother your little head with these things; leave it to the grown-ups. He came to recognize the quick, sidelong, heavily significant looks that passed between senior and junior doctor at some point of particular illumination, the glance that said: this one’s a hopeless case and, for future reference, here is the sign of his hopelessness.

  As a practiced patient, he could see the basic line of inquiry. From the outward, physical appearances of his body and his recounting of symptoms, they could begin to trace the malady back along the invisible pathways of his nervous system, using each set of physical examinations to conclude or exclude, tracking the illness back from the fingertips along the strands of myelin-sheathed nerve cells, back ever further through the cervical spine into the cerebral cortex.

  And somewhere along these mysterious pathways they would find what was wrong, surely, for this was the greatest clinic on earth and no one knew better.

  In the evenings, between test and result, debate and conclusion, Joe Shelby made his phone calls back home to Eva across the time zones and, closer, to his editors to make sure they did not take him off the shitholes list simply because he could no longer run or raise both arms to surrender. He lied to all of them. He told Eva he was feeling fine, while with every day, he sensed the feared specter closing on him. He told his editors the Mayo looked like figuring it out and he’d be cured. They were pleased. He read poems and his previous medical notes or flicked through endlessly tedious TV channels, or drank himself to sleep while news programs murmured the siren calls of his profession: wars and earthquakes, pestilence, flood, the curses that framed the human condition. Once, very late, with raw whisky souring his breath, he made a call to Faria Duclos and could not recall whether he told her either his truth or his travel plans, but sensed she understood, even cared, despite the monstrous way he had treated her. She had a right to know his news, he figured, because she had seen him in the Balkans, and helped him. She had taken his dictation and together they had transmitted it to New York and she had, therefore, saved him before they both moved on, barely shaking hands, not quite sure where to pigeonhole this encounter. She understood him because she had known him better and longer. And—only the whisky drunk would admit it—he turned to her because, of all those things, she would not take his burden as an insupportable yoke of her own.

  He pored over his last report from Nigel Lampton, the tall, scholarly British neurologist who had taken over his case in London from the guru of Harley Street because he was the man on motor neuron disease back in Britain and he did not think Joe Shelby, whatever else, had been afflicted with it. But Joe Shelby sensed from the whispered conversations in Rochester, Minnesota, just where the American specialists were leading their inquiries—not into the weakened muscles and fingers and ankles, but back from there, into the very core of his nervous system where the cells at the fulcrum of all voluntary and involuntary movement interact with the conductive axons, passing along the signals from the brain that issued the commands: move this, move that, walk, lift, talk, breathe. It was in those minute cells in the central nervous system that the nightmare resided.

  Motor neuron disease is defined as a progressive, incurable, degenerative disease of those cells. No one knows what causes it. There are theories, but no proofs, camouflaged in words like electrotoxicity and free radicals, meaning simply that at some stage, something like a virus invades the system, attaching itself to these critical cells without which the two subdivisions of the nervous system—automatic functions such as breathing, active decisions like walking or masturbation—do not work. People these days are used to the notion that all illness may be cured: AZT will arrest AIDS, chemotherapy will batter cancer into submission, a pill or infusion of steroids will hold back the malign course of rheumatoid arthritis, stem cell research will grant eternal life if only the crazy Christian right will permit it. But no one knows how to stop motor neuron disease, or cure it, or treat it. There are medications that are supposed to slow it, but physicians dispute their value. It has different names, such as amyotrophic lateral sclerosis, ALS, or Lou Gehrig’s, progressive muscular atrophy and progressive bulbar palsy. It gets you like this: progressively, as the cells in the upper and lower central nervous system decay and cease to perform their function, the muscle groups they command weaken until the very acts of breathing or swallowing are affected. At first it may be simply a weakness in the arms or legs that does not respond to treatment. Then the weakness is transformed into a kind of paralysis: the muscle groups under the command of the motor neuron cells stop responding at all. The localized problem in a wrist or ankle spreads to an entire limb. The fingers droop like willow fronds, then curl like claws. Falling into total disuse, with no signals reaching them, the muscle groups atrophy, waste away. In the final stages, you cannot speak, swallow or move. But you know exactly what is happening. Your brain functions, your eyes see, your ears hear. You know you are dying and will die when your lungs clog or you choke, or you contract pneumonia. But there is no reduction of consciousness. Your mind lives in a mummified cocoon. Your brain allows you to perceive the stages of your vegetation. A monster has insinuated itself into your body, spreading its tentacles from the rotten cells of the central system to the peripheries that depend on them. Everything you ever were has gone, except your ability to perceive your degradation, your pitiful failure to be a normal person. Your final days will be spent in a wheelchair with perhaps some form of computer screen you can use to communicate by tapping out messages with a pointer held between your teeth. Your head will loll and be held in place with a brace. You will look at your fingers and toes and arms and legs and realize they may just as well belong to a stranger for all you can move them.

  Before the onset of his weakness, Joe Shelby had never even heard of the disease. It’s not a big killer like AIDS or cancer or heart attacks or road travel. It affects maybe one or two people out of every 100,000 each year, usually—but not exclusively—people older than Joe Shelby. But, almost as soon as he heard of it, he heard, too, of the debate that bound its sufferers to the euthanasia business: why continue, like this, without hope or dignity, when the outcome was foretold? Why not take a cocktail, an injection, and be done? There were some mysterious survivors—Stephen Hawking, the British physics professor, bent and twisted in his wheelchair, communicating without speech but thinking like a dynamo, was probably the most notable. But imagine the others, the terminal, hospice patients in their still twilight, calling to be heard where no sound came—Baudelaire’s mute cries again—crying silently for release. The disease defied everything Joe Shelby had been brought up to believe: I will, therefore I can. This disease said: you are powerless against the destiny I, in all my blossoming evil, have conceived for you. The disease sets its own pace but, usually, is inexorable. In its quickest form it will pass along the limbs with the speed and destructiveness of brushfire, giving no chance for flight or rescue. Its only certainty is that it will claim its victim and offer no mercy. In his hotel ro
om, one drunken night, the TV showed a replay of a movie called A River Runs Through It. Its final scene shows an old man who has raised and buried his family and fulfilled life’s missions. Now he awaits his own demise, at peace with his river, tying his fishing fly to his line with thick, fumbly fingers, his torments behind him. Joe Shelby sobbed in great heaves, confronted with this vision of what he had always imagined he would become, now slipped from his failing grasp.

  On the fifth day at the Mayo Clinic, he was given his final appointment with two neurologists. Later, his recall of the conversations was dominated by the way the encounter ended when the more senior of the two physicians looked at his watch and said: “That the time? I’m out of here.” Perhaps that was just a way of saying: look, buddy, we hand down these sentences all the time.

  Joe Shelby had braced himself to be tough. His tote bag was already packed. Whatever the verdict, he had booked himself a late flight out of Rochester, Minnesota, through Chicago, on to New York and a connection via Frankfurt to Tel Aviv. Lufthansa. Business class. Already he was wearing his jeans and bush jacket and high-sided suede boots that provided some support to his ankles. No way he would be put out to pasture, he told Eva over the phone when she protested that he should come back to London first. I need to show them I can hack it, he said. Show them, or fool yourself, she said. But there was no way he would go home to mope or rejoice, whatever the outcome. He had to send a different signal to his bosses. He had a job to do. Medical stuff was an irksome interruption, but no cause to abandon his commitment to covering the world’s nastier events. All week the TV chronicled the latest worsening in the Middle East, the new intifadeh, as they called it, the newest uprising of so many no one could count anymore. Watching it, he craved the ring of gunfire and the dying cries of “Allah-uh akhbar” as if they might offer an antidote to the nightmare. You are a fool, Joe Shelby, if you think your bosses want this, Eva said. You are a fool if you think war will heal you. But he quoted back to her: the wife who stands between a warrior and a lion is a foolish wife. Then we are both fools, she said.

  “Please sit down, Mr. Shelby.”

  “Joe.”

  They had, he guessed, developed a routine, a patter. Good cop, bad cop, doling out vestiges of hope and despair, putting the message across in a way that said: look, it happens, OK? We see it all the time. You’re not the worst. But no one will cure you through their own tears. It doesn’t work like that. No one can cure you at all.

  “OK, Joe. Like your articles by the way. Great stuff from the Balkans. Just tell me if you want me to cut to the chase, as it were.”

  “Go for it.”

  “OK, Joe. We’ve taken a good, hard look at you, and, frankly, we’re still not sure.”

  “But?”

  “But we are leaning towards a motor neuron problem.”

  “Meaning?”

  “Well. Motor neuron disease can be pretty obvious. What we call barn door MND, meaning you can’t miss something as obvious as a barn door. You don’t present like that. But there are signs, first of all that you don’t have the symptoms for more benevolent neuropathies related to the autoimmune system. I’m not saying it’s impossible, but the usual signs—certain electrical responses and antibodies—aren’t there. I know Professor Lampton doesn’t sign on to this altogether, but that’s our thinking. OK so far?”

  Joe nodded. His mouth had gone dry. He wanted them to say, as his father had done in boyhood games, that he would be given another innings, that he was not yet out, eliminated. But they were not heading that way.

  “So that leaves the other possibility of an indolent form of motor neuron disease whose prognosis is not very clear. And again I think we’d all like to see you again in six months, or whenever Professor Lampton wants to send you over, to take another look. Maybe we’re wrong, but the symptoms do suggest some kind of ALS.”

  “So you are saying I have motor neuron disease?” So why not put on the black cap to tell me?

  “It looks that way.”

  Joe Shelby gulped and felt a prickle of tears behind his eyes. He felt the skin on his face go cold then break out in a patina of sweat. Motor neuron disease was the death sentence, the final indignity. You could laugh all you liked in the face of this danger and it would not go away: it would laugh straight back until it devoured you and sent you to the grave with soundless cries and soiled pajamas. And he was damned if he would allow these white-coated physicians to see the fear their sentence had produced.

  “So. Like they say. How long have I got, doc?”

  “Hard to say.”

  “But if you had to say.”

  “If I had to say, and it could be quicker or slower, one year, three years tops.”

  “And in that time?”

  “In that time, you’d see a progressive continuation of the kind of weakness you have now spreading to other muscle groups.”

  “So I’d be in a wheelchair?”

  “At some stage.”

  “And then?”

  “There are support groups, Joe.”

  “Do I look like someone who wants a support group?”

  “I’m sorry, Joe.”

  “That the time? I’m out of here.”

  Joe Shelby looked back on the journey away from the Mayo as if it had been a black hole, a period of time that had simply disappeared. He recalled sending a faxed copy of the diagnosis to Nigel Lampton, his neurologist in London. He had vague memories of writing a check to the clinic and booking a cab, transiting airports and showing his passport and boarding pass, drinking and, at one stage somewhere over the Atlantic, weeping into the mirror in the cramped toilet of a creaking old 747. He traveled on reflexes bred of long practice: check in, board plane, fasten seat belt. His mind could do no more than rearrange jumbled words—three years tops, wheelchair, support groups, one year, out of here. Out of everything worth defining as a life. They were saying: we believe you have an incurable condition called motor neuron disease that will kill you at its leisure; there is no cure, no treatment, nothing we can do save cash our checks and move on. The manner of his death would be ugly, heralded by disability, deformity and—most terrifying—dependence on others to assist with nutrition, excretion, hygiene, mobility, communication, expiry. He would be a vegetating shell, a living corpse draped around a brain screaming for release. Like some counterenergy, he would be the antithesis of his true self and he had not the courage to confront that prospect the way he had once surveyed the battlefronts. He could barely breathe or mumble the words, but forced himself to whisper them for his own inner ear only: motor neuron disease, judge and jury; motor neuron disease, the final executioner.

  Three years tops. I’m out of here. Three years tops and I am truly out of here.

  Then he was in the maelstrom of Ben Gurion’s arrivals area scanning the crowd below the palms, in the cloying heat, for the one, single face he most wanted to see there among the tumult of soldiers in ill-fitting olive uniforms and Orthodox in their ringlets and agents in dark shades whose only prayer was to intercept the suicide bombers before it was too late.

  TEL AVIV. AUGUST 2000

  She saw him, but waited for him to notice her, to establish that he was traveling alone. She could not guess what this sudden attention meant: he had sought her out in the Balkans so that she could type for him, hold him in some seedy hotel with cigarette burns and less easily identified stains on the carpet. He had called from some place in Middle America, giving his flight plans down to the arrival time. It made no sense—not after nine months of silence in which she had tired of the bullring, tired of the endless, searing highs of her coke habit and the brittle, snappy dawns when the chemicals released her, dropped her back, cruel and abrupt, down to the hard, cold earth.

  —

  He glanced around to see if he was being observed before crabbing towards her through the crowd at Ben Gurion, leaning heavily on his telescopic walking pole that had become the unwanted badge of his condition. No one made way, of course. Thi
s was the Middle East where everyone labored under the burden of their original innocence, too busy tending their own pain to see beyond it to a world that really did not need this unending blight. She moved toward him, different than when they had first met in these parts, of course—older, slightly haggard as if the years had sculpted her, pared her flesh down to an irreducible core of fierce angles and big, vulnerable eyes that had seen more than they should have. The pit of his stomach churned. He recognized the quality of passion that had bound them. There is a difference between calculable love and the fire of destiny, between affection that can be explained and the inexplicable magnetism of like souls. A sudden fear seized him: would she acknowledge him again as she had in the Balkans, or had that been a one-off, a curiosity: come see the geek, the gimp? Would she see the past beneath the skein of damaged nerves and muscles? Was there such a thing as an essence of him that transcended his physical state, his condition? Another inner voice said: they should not be meeting. They should not permit the illusion of being together. There was peril where their fates crossed, a hazard like the striking of flint on stone that produced fire, indifferent to what it consumed. His breath caught, not just from the conscious effort of movement or of carrying his Kevlar vest and laptop, his supplies of Scotch and cigarettes, notebooks and expensive pens. She had come to meet him. She had responded where he had no rights of expectation, no rights of anything at all.