by Paul Colize
13: LOCKED-IN SYNDROME
X Midi was transferred to the sixth floor of Saint-Pierre Hospital, to a four-bed room on the neurology ward.
His immediate neighbour was a man in his seventies, hospitalised following a stroke that had lost him the use of one side of his body. The man was experiencing trouble with language, and had great difficulty expressing himself. He spent his days staring at the sky, or the comings and goings in the room. He had few visits and called the nurses frequently, on the slightest pretext.
Late one afternoon, when the last visitors were leaving, he activated the call button. He pressed it again a few seconds later.
When the nurse arrived, she found the man in a highly agitated state.
‘What is it, Sir?’
The man pointed to his neighbour, but was unable to form the words.
The nurse bent over him.
‘Yes... Is something the matter?’
The man opened his mouth, held it gaping for a moment, then managed to get a couple of words out.
‘He moved.’
The nurse shot a glance at X Midi, but could see no significant change.
The neurologist in charge of X Midi’s case was informed of the incident when he came on duty next day. He went to his patient’s bedside, examined him carefully but could see no sign of a change in his condition.
He questioned the man in his seventies. It took him more than half an hour to piece together the scraps of an answer.
The man was no longer quite convinced about signs of movement as such, but assured the doctor he had seen his neighbour open his eyes.
The neurologist opted for a fresh battery of tests.
The patient had risen from 4 to 5 on the GCS. X Midi still showed no verbal responses or movement, but the opening of his eyes – or rather, the flickering of his eyelids, previously noted only in response to pain – now occurred as a reaction to certain noises.
The doctor decided to carry out further assessment of the man’s brain stem reflexes, for a more accurate prognosis.
He noted a decrease in heart rate when he pressed on the man’s eyes, and contraction of the pupils in response to light.
The electroencephalogram – which had previously recorded slow electrical brain activity – now showed a response to aural stimuli. The neurologist also recorded posterior basic rhythm in the alpha frequency band. Lastly, a functional MRI scan was carried out. The examination aimed at identifying the presence of deafferentation syndrome, as distinct from deep coma or persistent vegetative state.
Several doctors and nurses came to X Midi’s bedside and spoke to him, hoping to see his eyelids flicker in response to words or phrases he might understand.
The patient responded when addressed, but failed to engage when invited to close his eyes firmly once for ‘yes’, and twice for ‘no’.
He was addressed in other languages, but each time, his response was a single blink of the eyes.
By the end of the day, the medical team was certain that X Midi was conscious. He could hear what was said, he understood French, English and even German, but was refusing to cooperate.
The tests concluded that X Midi was awake and fully conscious. His intellectual faculties and memory were intact. He could see and hear but was unable to communicate due to a state of total paralysis. All he could do was blink. His particular set of neurological symptoms was better known as Locked-In syndrome.
14: BACK THERE
A shaft of light bored a hole in the dark, burning my retina.
I heard a low hubbub of noise. I could distinguish sounds, and murmurings. Unfamiliar words. Tetraplegic. Dysarthria. Sensory loss. I don’t want that all over again. The questions. The treatments. The drugs. The isolation. The fear.
Hands examine my body. An object moves across the soles of my feet. Instinctively, my big toe stretches out straight. More voices. More words. Bilateral Babinski sign. Soft abdomen. Pupillary reflexes. Faces enter my field of vision, looming larger, wavering. Mouths open and twist in grotesque, slow motion. Blink!
I am poised between the comfort of death and a life that’s no longer my own.
I know their traps by now, and how to avoid them. I know their questions, their manipulations, their drugs.
One blink! Two! I try to turn my head. I follow the movement of their white coats with my eyes. I’ve told you everything already. You didn’t believe me.
You’ll have nothing from me but silence, and tears that flow of their own accord. You won’t send me back there.
15: FOUR DAYS AND FOUR NIGHTS
At night, shouts and groans of pain reach my ears, through the walls. From time to time, the sharp shriek of an alarm rings out. Shouted orders. The corridor echoes with the beat of hooves.
Each night, death stalks. She slips into my room. Brushes me with her shadow, her silhouette swirls in the semi-dark. She reminds me I’m on borrowed time, that she will come for me soon enough.
I was thirteen years old when she gave me her first sign.
The Cold War was being waged in space. Europe trembled. Sputnik, Explorer. The Russians and the Americans vied for technological supremacy.
In Brussels, after two years of titanic construction work that had disfigured the city, Expo 58 opened its doors to the public. Brussels was the centre of the world. The newspapers and radio talked of nothing else. Jubilation masked the onset of war.
The Golden Sixties were on their way. We had more money now. My father took on new responsibilities, and was often away from home. He would travel all week, come home on Friday evening, and leave again first thing on Monday morning.
We had left our modest apartment on Avenue de la Couronne for a ground-floor apartment with a garden, on a smart avenue in Uccle, a stone’s throw from the Bois de la Cambre.
I was in high school, having managed to escape the Catholic education system. I convinced my mother to enrol me at the Athénée, a less strict, more open-minded institution. My natural zest for learning was yet to manifest itself at school, however.
Drumming was still my main interest. Little by little, as the months went by and my pocket money mounted up, I had assembled a complete drum kit, and installed it in the cellar. I had compiled it in stages, from second-hand pieces in an assortment of different colours. The bass drum was an Olympic, the snare drum, the high and low-mid tom-tom were Ludwigs and the low floor tom-tom was a Premier. The cymbals and the hi-hat were similarly mismatched.
If you wanted to pass for a drummer in the know, you had to take sides. Like the guitars (Gibson or Fender) it was Ludwig, Gretsch or Premier. And once your choice was made, you would defend it to your dying breath. Not me. Musically, my mix-and-match drum kit didn’t bother me. But I couldn’t see myself joining a group with a set-up like that.
The record-shop lady’s predictions proved wrong. Rock lived on, delivering a fresh load of hits, month after month. I remained loyal to Chuck Berry, but I had other favourites, too: musicians like Jerry Lee Lewis, or the Everly Brothers.
I still couldn’t get along with Elvis Presley, though his song ‘Hard Headed Woman’ was a huge hit. He had a powerful, tuneful voice, but I didn’t like his stage act, nor his clothes.
Our neighbours on the first floor, a party-loving couple with no children, ordered vats of Burgundy wine, which they bottled in the next cellar to ours. Some Saturdays, they would invite friends round to help with the bottling, to the sound of my drumming.
Late in the afternoon, tipsy on wine fumes and repeated tastings, everyone would clap and laugh out loud. For years, my rim-shots conjured the aroma of Puligny-Montrachet.
Whenever I had enough money, I would visit the music store on Place Saint-Jean to add to my kit – mostly small percussion pieces, bells or chimes.
To replenish my funds, I had taken a job delivering papers for a bookshop and newsagent on Rue Vanderkindere.
I made two rounds a day, early in the morning, around 6:30a.m., and again in the evening at about 6:00p.m. On Thursday and Saturday aftern
oons, I made an extra round to deliver the weeklies, and children’s magazines.
The bookshop provided me with a big, black bicycle fitted with a metal basket and a large bag at the front. It was heavy and difficult to manoeuvre, especially at the beginning of each round, when the bag was full of newspapers.
The accident happened on a sunny Saturday afternoon in May.
On Saturday mornings, the Athénée gave pupils a choice between two hours of study or a trip to the swimming pool. With the exception of kids who were ‘chicken’, or being punished, almost everyone chose the pool.
We had to be at school half an hour earlier than usual, meaning I had to hurry to finish my morning round.
Two buses were waiting for us, double-parked on Avenue Houzeau, their engines ticking over. We went to Saint-Gilles and the Bains de la Perche, an old-fashioned open-air pool with three storeys of individual changing cubicles all around. The damp air and the smell of chorine assailed us as we stepped through the door.
In the pool, the novice swimmers were harnessed like fairground ponies and kept afloat by means of a rod and line. We mocked them and joked at their expense as we walked by.
The lifeguards went about their work, oblivious to our sarcasm. I can still hear their instructions ringing out around the poolside area: ‘one, bend your knees, two, three.’
The place was thronged with kids. Different schools would arrive, in quick succession. We shared changing cubicles between two, even three. As soon as we were changed, we lined up in single file to go through the showers. It was a tense, frightening moment. The great challenge was to catch the boy in front of you unawares and pull down his swimming trunks, to general hilarity.
On the Saturday in question, I shared my cubicle with a tall, well-built boy from one of the classes above. He must have been two or three years older than me. He undressed in silence, and I saw his erection, good and hard. He waited until I had undressed, and whistled in admiration. Then he reached out, stroked me and dropped to his knees. Impossible to sweep ten years of indoctrination under the bed with my Bible. I saw fire, and flames, demons bearing tridents, the faces of sinners twisted in agony; terrifying pictures from my catechism. I felt guilty, and thrilled to the core. Very quickly, it was over. A repugnant jolt of pleasure shook my body, and I supposed it was my turn, in the inalterable rules of the game. He groaned, and shook. I gagged on the bitter taste and the bleach. I wanted to be sick. He called me a ‘pussy’ and cracked the top of my skull with his fist before leaving the cubicle.
I was in a trance, lightning danced before my eyes. I had committed a sin of the flesh. I tried to shut out the images and words instilled in me all through my childhood.
God was all-seeing, all-knowing, he knew our innermost secrets. The Evil One had triumphed; I was bound for the fires of Hell.
I said nothing to anyone. I said I felt unwell. I didn’t swim.
I went home.
My mother said I looked pale, and odd.
I went to the bookshop.
I took the bike.
I rode full tilt down Rue Ernest Gossart. My legs were spinning, my heart was thumping and my brain boiled.
In the street, people stared at me as if they knew. I couldn’t get the taste out of my mouth. I felt humiliated, filthy, destroyed. I wanted to turn back time, start from scratch and carry on living a normal life. I wanted to die. I didn’t see the car door open into my path.
Eyewitnesses said I didn’t brake. I woke up on the emergency ward at the Sainte-Elizabeth Clinic. The doctor said I had concussion, and that I was very lucky.
God’s retribution was swift. The dread Angels of Justice took me to a dark room with no chink of light.
I stayed there for four days and four nights.
16: IN THE EARLY AFTERNOON
At the beginning of April, the neurology team met with their chief consultant to discuss X Midi’s condition.
Recent studies of Locked-In syndrome had identified three categories: total LIS, partial LIS and fake LIS.
In the case of total LIS, the patient is the victim of a primary, massive, brain stem lesion. In the first months, he can do nothing except open and close one eyelid, sometimes two.
In partial LIS, the lesion allows for partial recuperation of one brain segment, and part of one limb.
Fake LIS is declared when the damage is to the cerebral lobes or cerebellum, and lesions to the brain stem are secondary.
The doctors had observed X Midi stretching his mouth and making slight rotations of the head, suggesting he was coming out of total Locked-In syndrome.
He was no longer dependent on a ventilator, but was breathing thanks to the tracheotomy performed when he arrived in hospital. A cannula had been implanted at the base of his neck, between the second and third tracheal ring.
From these few, admittedly slender clues, the team diagnosed partial LIS in X Midi’s case. With intensive, multi-disciplinary re-education, he could hope to regain motor control. In the best-case scenario, a long period of re-adaptation would lead to partial tetraplegia with some speech and swallowing difficulties.
But in most cases, the prognosis remained bleak. Massive neurological deficits of this kind prevented patients from eating or moving, and exposed them to multiple complications, often resulting in death.
X Midi required treatment in a neuromuscular re-education unit. Finding one was difficult at the best of times, but securing somewhere prepared to take on such a difficult case would be little short of miraculous given the patient’s poor clinical prognosis, and the likelihood of his hefty medical bill remaining unpaid.
His doctors outlined the key points of the case, detailed the treatments administered, noted their recent observations and assigned a social worker to contact the relevant specialist institutions.
In addition to his neurological condition, the report noted that X Midi was being fed intravenously and had been fitted with a urinary catheter, that he was suffering with tetraparesis and paralysis of the face and throat, anal incontinence and congestion of the tracheal cannula, requiring frequent aspiration.
The social worker began making enquiries for a bed. She was prepared for a hard fight in the face of the usual objections and administrative inertia.
She was unprepared for the discovery that LIS was something of a curiosity. The condition both perplexed and intrigued medical teams worldwide.
Three days after sending out her request to centres across the country, two institutions replied that they were ready to take on X Midi: Brugmann Hospital in the Brussels district of Laeken, and the Derscheid Clinic in Hulpe, south of the city in the Greater Brussels region.
The latter seemed the more motivated to tackle the case, and was informed that X Midi would be transferred early on the afternoon of Thursday, April the eighth, 2010.
17: A MAN
The doctors said my concussion had left no serious after-effects. But at times, I still felt a kind of disconnection between reality and the way I saw things. Sometimes, it seemed I was watching a badlydubbed film: the actors’ words failed to match the movements of their lips.
I liked solitude. I had few friends. A few classmates, some neighbours and acquaintances. Drumming and books filled my time. Little by little, I fell out of synch with the outside world.
I was approaching my seventeenth year. My school results were disastrous. My teachers complained about my introversion and distant manner, which they took as a sign of arrogance and an anti-social nature.
I was biding my time: only recently, the school-leaving age had been raised from fourteen to sixteen. As soon as I turned sixteen, I announced to my parents that I was giving up on education, as permitted by law. I expected tears from my mother, and a thorough beating from my father.
All I got were my mother’s tears. My father raised his hand to me and I stared him in the eye, ready to take the beating I deserved, without flinching. He thought better of it. My stature and silence had already impressed more than a few. For the first
time, I was saved from my father’s violent temper by my own physical authority.
My mother scurried into the kitchen. My father gave me three months to find a job, or he would throw me out on the street without a second thought. Once I had found a job, he would take a portion of my earnings for food and board. He had already decided on the amount: half of my future salary.
Later, I understood that this was a desperate attempt to get me to change my mind. I accepted his conditions and set about finding a job.
With no qualifications and no skills, I had no hope of any decent work. What would I do if I found nothing? How would I survive if my father threw me out? I worried that I would be unable to keep my drum kit. More than anything, I hoped he wouldn’t stop me from seeing my mother.
I read hundreds of advertisements in Le Soir and La Libre Belgique. I wrote a host of letters and went for interviews in every corner of the capital. I faced insults and suspicion.
Two weeks before the appointed deadline, when I had given up hope, I secured a contract as a warehouse assistant with a Peugeot car dealer, not far from our old apartment.
The central parts shop covered almost a thousand square metres, in a basement beneath the garage and showroom, where the 403 and the more recent 404 paraded for the public.
To get to work, I drew on my savings and bought myself a second-hand, 2-stroke Puch scooter. It was a sluggish machine, but it gave me a feeling of freedom nonetheless.
I joined a team of twenty stock-boys, all older than me. Some were in charge of customer sales over the counter. These were the plum jobs. They left their chairs only when a mechanic or coachbuilder showed up, to search the catalogue for the reference numbers of the parts required, and fetch them from the shelves.
Two employees manned the workshop counter. The mechanics would come down at regular intervals and line up the parts on the counter-top, their hands filthy with oil. They would take advantage of the break to smoke a cigarette and exchange a few pleasantries.
