Previously


1. CLICK

Ksar Massa on the south coast of Morocco, 4:48 am – June 2007

Click. The shutter snaps the picture.

Hasni the photographer gestures at the fifty-or-so people gathered before him: they are free to go. Most are dressed in white djellabas bought for the occasion in a souk for tourists.

They did a lot of talking, drinking, laughing, and dancing.

They are tired but happy with the change of scenery. The sun has finally risen from beyond the desert mountains encircling their hotel. They have gotten into the habit of ending their yearly seminars with an all-nighter before flying back to Paris, and this one is no exception.

The return flight to CDG airport is bound to pass in a flash as fatigue washes over the wearied revelers. Soon, too soon, they will land, and resume work the next day, fulfilling their assignment as best they can.

In consultant-speak, one doesn’t work, one is on assignment. Consultants don’t have managers, they have collaborators. They set up office at the client’s and don’t see much of each other during the year.

Hence, this late June convention is a great opportunity for them to get together or meet for the first time. It’s a recipe for success: magnificent vistas of the Counter-Atlas and the Atlantic, fishermen’s villages, endless sandy beaches, fun and games, swimming, all in a lively atmosphere with actual work reduced to a minimum.

A man with white-blond hair stands out in the group photo. He is also wearing a djellaba, only his is black. The satisfaction that show through his reserved smile signals he is enjoying the moment.

He and his business partners have recruited over a hundred consultants since founding the firm less than five years ago. They work with major banks and have built a solid reputation as Banking process transformation experts  – a profession that sounds foreign to most people.

Soon after he had created it, he sold his first firm for a substantial sum thanks to the Internet bubble – enough to keep him free from want for a few years. As it turns out, he has never lacked for life’s necessities.

He sails back to his room for a short night. There – he empties his pockets, pulls out a key, a card holder, and a small piece of rolled-up paper. He smiles: the group leaders had written something akin to a prophecy on each paper roll, the kind one finds in fortune cookies. The one he picked at dinner earlier reads: “Get ready for a life-changing encounter”. The game concocted by the group leaders entails stating your “future” out loud; when a young trainee drew the same prophecy and read it aloud to the other dinner guests, the banter flew thick and fast.

He will be home soon, back in the beautiful apartment he recently moved into with his wife and four children. He can’t wait to be reunited with them again.

For the past few years, reality kept pace with his dreams– and more. He sees it as a just reward for all his hard work, with just a bit of luck thrown in for good measure.

He is friendly and warm, compassionate even. People like him. Aware of his success, he doesn’t brag about it. Still, he can’t help feeling somewhat invincible now, after years of low self-esteem.

To be totally honest, there is a hint of false modesty in his attitude that can be a bit grating at times, especially since he seems to have trouble understanding other people’s problems.

He knows he is privileged, and he would simply like to keep it that way.

***

She wasn’t in the picture. She has been waiting for him; there he is, at last. He looks tired. His lightly tanned skin contrasts with his fair hair. He tells her about his seminar, especially the best parts. She goes over what she did while he was away, throwing in a few anecdotes. She had helped him choose an outfit for the offbeat skit session before he left. As it turns out, the Alsatian headdress he borrowed from his mother was a big hit. She is happy for him. It is a shame she couldn’t be there to see it – it must have been great fun.

She can’t help brooding over the fact that she stayed in Paris while he was abroad enjoying himself. Okay, it’s not that bad, but she could have done with a change of scene. She loves him, they live a comfortable life. In fact, they have more than they need. More than she has ever asked for. She even feels guilty about it sometimes– she wasn’t raised in such abundance. It’s as if she were living his life rather than her own. She longs for them to share a closer bond.

He thinks she is fulfilled. After all, don’t they have four beautiful children, whom she raises with infinite love and care? She takes great pleasure in dressing them as she dreams for them. She likes fabrics, cuts, colors, patterns. A few years back, she would spend hours designing clothes. She was talented– but it’s a thing of the past now. She misses it.

And yet she gets to travel a lot, she goes on holidays, she throws parties, she buys things… what is there for her to complain about? He, for one, can’t see why she would. He knows her life hasn’t always been easy. She suffered a loss in her youth that left her with a gaping void. He thinks their marriage and children have helped her move on, but he is mistaken. She can’t move on.

She senses his annoyance at her sudden bouts of melancholy, her long phone conversations with her friends Lorelei and Joy, or her afternoons with Smith’s mother Kate. Smith and their second son Antonin are friends. He would probably like to see her take control of her life and be more active, but her unease runs deeper than that. She expects more from him, she needs him to encourage her, boost her, and above all help her feel more confident about herself. But, instead of “pushing her out there”, he insists on protecting her.

While they seem so happy on the outside, she sometimes wonders how much he really loves her. Whenever she says, “I love you”, he tells her he loves her too. But he is never the one to say it first.

***

He asks her about her weekend, about her job, about the kids, about her mother. He is happy to take her in his arms. Last night is receding into a distant memory. Locked eyes. Intertwined laughter. Inhibitions loosened by alcohol.

He looks at her. He loves her. He would like her to be happier. He makes a joke or two. She smiles. He can’t see that he might just be hindering her, unwittingly, simply by being who he is. He never really thought about it. As far as he is concerned, he is making the effort of “putting himself in her shoes”.

A phrase that sounds like a promise, albeit one that’s hard to keep.

***

A few hours earlier, in Agadir. The seminar host is at his wits’ end. His team failed to check that all the consultants had actually boarded the departure bus, and now one of the most brilliant consultants, Clara, is nowhere to be found. He calls the photographer, who is still at the hotel packing his gear, and asks him to have a look around and make sure everyone is gone. Where is she? he wonders with mounting anxiety.

The photographer hangs up. As he raises his phone to take a selfie, a young woman’s face appears onscreen. She nestles against his shoulder and draws her lips close to his. She was about to be promoted from senior to manager, but she doesn’t care anymore. While he captured her beaming face earlier, in the darkroom, she unrolled her fortune-telling paper. It read: “Lightning never strikes twice”. They saw it as a sign.

Whereas the seminar was nothing more than a break to most of their colleagues, it upended their lives. Click. That’s it. The lens has laid them on reel for good.


2. DOUBLE-CLICK

Paris, 4:48 am, a morning like any other – September 2017

It’s early. Way too early.

Awakened against his will by the incongruous and untimely contraction of the muscles in his back immediately followed by an even more crippling cramp in his third toe, he has no choice but to get upGroggy and barely awake, he slips out of bed as quietly as possible so as not to disturb Aure, lying in blissful slumber next to him.

In the long corridor that leads to the kitchen, he drags his sleepy feet along the bow window overlooking the galvanized roofs of the ‘Musée d’Orsay’. He walks to the sink, opens a drawer, rummages for a foilstrip. The Sinemet[1] tablet wrapped inside has the same effect on him as Inca gold on Spanish conquistadors. Catching his unkempt reflection in the anodized aluminum, he pops out a blue tablet and swallows it at once.

He knows it will be at least an hour before the drug takes effect. With feet like lead, he shuffles to the living room and falls into the chair in front of his computer. Keen to resume typing his text, he enters his password. Next comes the double-click, a simple gesture that has become an automatic reflex for billionsof his fellow earthlings – but not for him. Having to press and release the mouse button twice in rapid succession brings him back to his new condition: no matter how hard he tries to control his index finger, it seems to live a life of its own. After many failed attempts, he somehow manages to tap an acceptable “double-click” that is immediately rewarded with a window opening onto the vast world.

***

Maousse’s wake-up call is harsh too. As with every morning, the desk light came on without warning. Yesterday it woke him at 6:10, today at 4:53, and tomorrow… who knows?

He should have slept longer; his eyes are bloodshot, and his face is drawn from lack of sleep. The part of his brain governing his writing skills seems to be the only one in working order, as it guides his numb fingers over the keyboard.

“He should really go back to bed, he’s in no condition to write.”

The letters change into words as they progress along the page. Tentative at first, they gain confidence, gradually steadying their sporadic pace, and soon get so bold that they start anticipating Double-Click’s imagination.

The way Double-Click’s hand goes from being stiff to agile in the few minutes after waking never fails to startle Maousse. How is that possible?

***

Double-Click has done enough work on his blog for the morning. As he ends his session, a stream of photos fills the lock screen. He smiles when the group photo taken in Ksar Massa pops up. He looked good with his blond hair and black djellaba.

His name was Ludwig back then.

An encounter changed his life


3. FALSE LEADS

Cette image a un attribut alt vide ; son nom de fichier est Rafael_Nadal_2011_Roland_Garros_2011-crop.jpg

Double-Click dropped his racket on his last serve– but his gesture did not precede an ecstatic bow before an enthralled French Open audience wildly applauding a hard-won five-set victory over Rafael Nadal. No. He dropped his racket because a sharp bolt of pain shot through his right shoulder.

He had to do something about it this time.

Until then, Double-Click had simply waited for the pain to “go away.” But he knew the time had come for him to see a doctor.

He couldn’t figure out why the lengthy physiotherapy sessions he had somehow managed to fit into his busy schedule did not alleviate the pain and stiffness in his shoulder.

So, Double-Click went to see all sorts of “specialists.” He first consulted Dr. Wang, a Burmese acupuncturist whose office was in the 7th arrondissement of Paris, far from his homeland’s dictatorships. The man’s needles proved to be as painful as they were ineffective.

After that, Double-Click made an appointment with a fluid specialist (cold as ice, but very pretty) who manipulated him to not much avail. He was even introduced to Didi Jen Ghié from The Adventures of Tintin: the Blue Lotus: “It’s very simple: I’ll cut off your head! Then you will know the truth!” A radical offer which he chose to turn down.

Finally, Double-Click’s general practitionersent him to a neurologist at Saint-Louis Hospital, who failed to detect anything suspicious on the scan. An overjoyed Double-Click was given the all-clear.

But his euphoria was short-lived, as the accumulation of medical clues soon revealed his pathology.

A revelation that came as a shock.

4.  THE REVELATION

Double-Click tried posting an ad in the Classifieds: Looking for a charitable soul willing to deliver bad news to a happy man from a happy family. A month passed. No calls, no e-mails, no text messages. Nothing. Not even a request for information. Who is the usual bearer of bad news? Most of the time, some sympathetic stranger (doctor, nurse, police officer) is commissioned to inform the still-blissfully unaware recipient that the party’s over.

But in Double-Click’s case, both diagnosis and announcement remained almost exclusively within the family circle. In her capacity as an experienced practitioner, Double-Click’s cardiologist sister Irina spotted the early signs of a veiled pathology that every other specialist had failed to see; but she did not feel emotionally strong enough to share her hypothetical conclusions with Double-Click himself. In a reassuring tone, she suggested that he consult her husband Pat, also a cardiologist at Bichat Hospital. After a few specific questions and a spot of writing, the latter soon aligned his diagnosis with that of his sister.

But, like her, he was in no hurry to hit Double-Click with the bad news without being a hundred percent sure of his appraisal. He recommended his brother-in-law to an eminent neurologist at the Salpêtrière Hospital, who came to the same conclusion as his fellow practitioners and who kept equally quiet about it, preferring to refer Double-Click to yet another confirmatory examination.

Instinct or mere deduction led Double-Click to realize that things were not turning out quite as he had expected. Indeed, if his ailment had been benign, Irina would have reassured him long ago. Still, he was far from imagining that his was the same disease that had made his maternal grandfather’s old days a misery, for he thought this condition only affected the elderly.

When the consultation was over, the eminent Salpêtrière neurologist laid a hand on Double-Click’s shoulder for what seemed to be a very long time before seeing him out. This friendly and unusual gesture – especially from a stranger – was like a foreboding of things to come.

When Irina called her brother to wish him a happy birthday in the days that preceded a dreaded appointment with yet another specialist, his nerves were frayed from waiting. He told her that all he wanted for his birthday was “to know the truth.” 

Well, she couldn’t just spill the beans on the phone like that (and she didn’t feel she should anyway, as his sister), but she asked Pat to call him back the very next day. Which he did.

After hastily and rather sheepishly wishing him a happy birthday, Pat took a deep breath… and told Double-Click that he was suffering from “Parkinson’s syndrome. 

The news surprised Double-Click more than it worried him, since he didn’t really know what Parkinson’s entailed. Still, something in Pat’s voice didn’t augur well. His emotions stifled by his manners and innate modesty, Double-Click simply thanked Pat for letting him know and put the phone down.

A surge of dizzying anxiety that seemed to stem from a bad dream seized him to the point that he had to make sure he, Double-Click, really was that guy who had just hung the phone up. Yes, there was no doubt about it, he had indeed been the recipient of the call.

He suddenly felt as lonely as an astronaut on a space mission would upon seeing his capsule take off again without him, leaving him stranded in a celestial setting. He hurried back to his study and googled the word “Parkinson’s” for the very first time in his life.

As it turns out, the Internet is quite an unsparingly precise source of information on every major disease affecting the human race.

A mere fifteen minutes after entering the word in the world-famous search bar, he had already skimmed through the many blunt descriptions of the disease’s symptoms and general evolution. And now, in the silence of his study, Double-Click hears a noise. The familiar sound rises unannounced from the nearby church and fills the country air, echoing around the elegant country house. The bell that rings low and at regular intervals was traditionally known to cast a meditative spell on all living souls. It called for silence as it tolled the death knell.

“They say Parkinson’s takes its toll…” he breathes in a desperate attempt to make light of the situation.

But a chill runs down his spine – as if the death bell tolled just for him.

His hopes – a tad ambitious – of everlasting life on earth vanish at that very moment.

He immediately seeks shelter in the nearby Saint-Augustin church. The vast and silent nave seems the best place to put things into perspective and ask the Creator a few questions.

There, he enters into negotiations about his life expectancy on Earth, making sure to add to his prayer that he knows how insignificant his request may sound compared to the promise of eternal life.

His natural anxiety increases tenfold as the reality of the diagnosis dawns on him.

He goes home back to Aure and their four children, who are having dinner. As he tries his best not to let his inner distress show, he realizes how much his family means to him. His heart sinks – soon, he will have to darken their cloudless happiness.


5. FLASHBACK

Renault 4

The dinner is full of joy, as always. All invite Double-Click to sit with them at the round table and join in the fun.

Pretty, elegant and demanding, Aure is also extraordinarily sharp-eyed.

She is as poised as Double-Click is overenthusiastic, as dark-haired as he is blond, as attracted to matter as he is to abstract concepts, and as Pisces as he is Gemini– with all due respect to all the horoscope experts who claim that these two-star signs are anything but compatible. And right now, she is feeding her hungry brood after their day at school or the office.

Anaïs is Aure and Double-Click’s eldest daughter. Although she is neither Albanian nor a missionary, her selflessness and joie de vivre earned her the nickname of Sister Teresa. Outgoing, beautiful, funny, cheerful and outspoken (sometimes even cheeky), she masks her anxiety with the odd mood swing that turn her usual saint-like character into a disgruntled grouch.

César is the first son of the aforementioned couple. Nicknamed “Rudy” (for is rude sense of humor) the teenager is sharp and curious, with a witty mind bordering on the caustic. He has inherited Aure’s high standards. Although his quest for excellencesometimes drives him to the edge of obsession, it also leads him to make a good – even great – job of everything he undertakes. Reserved by nature, he would at times like to be more of an extrovert.

Antonin is his younger brother. Also good-looking and dark-haired like Aure, he is the outgoing kind: talkative, adaptable, enterprising, and always eager to learn new things – like the guitar and music theory – and make new friends. Antonin would rather spend his time surrounded by nature than by the Paris landscape. Nothing thrills him more than the prospect of a weekend in the countryside.

Max, the youngest, has just entered junior high. Open, bright, funny, and sharp, he draws his energy from his three older siblings. A true competitor at heart, he loves games and can’t wait to cross the Champ-de-Mars to play with the “Petits Anges” football team every Wednesday.

Racked by the secret of his diagnosis, Double-Click finds a bittersweetaftertaste to that evening’s dinner – as if he were being taken back into everything he has experienced so far with each member of his beloved family.

The highlights of their lives together flash by in a few seconds: he sees his children as babies, smiling, crying, teething, taking their first steps, falling, kindergarten, elementary school, friends, holidays, junior high, kissing, rebelling, clashing, high school, exams, driver’s tests… and he feels an irrepressible desire to know what will come next: cigarettes, buddies, dates, beers, first times, preparatory classes, Uni, Grandes Écoles, internships, first jobs…

He recalls their vacations in the mountains and by the sea, the thing that is done in their privileged world.

He remembers when he and Aure were kids, growing up in two magical places in particular: Chéry-sur-Mer, a town that is not coastal despite its name but located somewhere between the N76 road – downgraded to D2076 – and the woods of Sologne; and Rosier-en-Terres, a large Bourbonnais farmhouse nestled in the heart the French countryside.

Chéry-sur-Mer is Aure’s hometown. Known as the “Angel of the Sun,” her mother whose smile and soft blue eyes enfold you in a halo of kindnessstill lives there, and her grandchildren still go searching for the place where she keeps her wings at night before going to bed. Her pies and tarts are by far the best in the world. Aure’s uncle Gromyko is like a grandfather, only better. His eyes are always sparkling (with champagne more than fizzy water) and although he claims there is nothing to it, he is an incredibly talented magician who can turn any old vegetable patch into a Garden of Eden, any log pile into a wood palace, and even an old Renault 4 EDF into a legendary car. He works harder than anyone I know, always with a smile and a serene attitude.

The jukeboxes and pinball machines are a recent addition to Rosier-en-Terres. Built in 1751, it started out as a noble ensemble of agricultural farms that has since been transformed into a primary residence. Primary, like the warmth exuded by its thick and protective walls and the fond memories built over the years.

Double-Click’s children have been as happy as modern kids can be in these two places (days with their cousins or friends, bike rides, theater shows, film shootings, reading, pool games, parties, birthdays, diving in the swimming pool, trips on mopeds, and so on). And Double-Click’s childhood was blissful there too, albeit in a more “agricultural” way (feeding pigs, moving cows from one meadow to another, choosing a bull while holding hands with his father – what a memory! – collecting eggs in the henhouseriding on the tractor, etc.).

Dinner is drawing to an end. Double-Click decides that he won’t let anyone or anything, least of all his newfound mortalityrob him of the next episodes of their livesHe wants to stand side by side with Aure and watch their children grow into fulfilled adults.

This, he pledges, will be his war.

6. SIR JAMES P., AKA OLD HUBERT

In 1817, Sir James Parkinson published a medical paper entitled An Essay on the Shaking Palsy.

Shaking palsy – what a pretty-sounding name for a paradoxical condition
whereby paralysis causes agitation.

Six case studies were all it took to prove his point, enough to make today’s pharmaceutical giants green with envy as they must call on thousands of volunteers to conduct a clinical trial.

Sixty years after James Parkinson’s essay was published, a French neurologist called Jean Martin Charcot brought the London doctor’s work into focus and did him the honor of renaming the pathology in question: that’s how “Shaking Palsy” became “Parkinson’s Disease.”

But what has this got to do with Old Hubert? Aure asks Double-Click.

In the post-French Revolution period, while Britain was in political chaos, James Parkinson published nearly twenty political pamphlets. Writing under his own name and his pseudonym “Old Hubert,” he called for radical social reforms. In short, he was an activist, without paralysis but with a sharp eye for detail. He is said to have only truly examined one of his patients and to have gathered most of the elements in his study from watching affected pedestrians.

And indeed, Double-Click has noticed that his gait sometimes attracts prying and quiet unwelcome glances from other people in the street.

***

Sir James Parkinson had not expected his name to become so famous. And now that it has, does he feel happy about it from beyond the grave? To represent peace like Alfred Nobel does must be quite rewarding, but is there any pride to be derived from embodying a pathology with such negative overtones?

As it turns out – and perhaps this comes as a comfort to him 
– the name of the very person who prompted James Parkinson’s posthumous claim to fame, Jean-Martin Charcot, is associated with an even more serious condition.

Sir James Parkinson, who led a busy life, would probably have preferred to be remembered for his political pamphlets penned under the name Old Hubert and for his active involvement in other causes. In addition to being a doctor, he was a crusader for the rights of abused children and the mentally ill, and more surprisingly still, he was a chemist, a geologist, and a paleontologist.

Unlike his eponymous disease, he was a man worth more than meets the eye.

Sir James P. recently met Jean-Martin Charcot at a doctors’ intergenerational meeting up there in Heaven. Although less buoyant than in his youth, the still-lively Sir James P. expressed his dissatisfaction with his name being associated with only one pathology to the detriment of his many other achievements during his spell on Earth. Things got so heated between the two men that a violent magnetic storm broke over the Channel. Their revered dean Hippocrates chipped in to appease the raging debate and called for a more dignified demeanor. Sheepish, the two physicians pledged their obedience to the Greek Father of Medicine and sealed their reconciliation with a hug. Great scientists always find a common ground in the end.


Chapter 7 : The Announcement

Double-Click kept Old Hubert’s revelation to himself for two weeks. His only confidante during this time was his sister Irina, whose soothing support shall be remembered on the Day of Reckoning.

He decides to tell his family about his condition while they are all together spending a weekend in their holiday home in Rosier-en-Terres. He could gently broach the subject upon waking up on Sunday morning, for example, to give everyone some time to come to terms with the news.

Double-Click begins his dreaded announcement in the drowsy warmth of the marital bed. His words cling warily to his throat at first, before taking the plunge and floating the short distance to Aure’s ears. Emotion washes over him as he curls up in his beloved wife’s arms, and although Aure knows very little about her husband’s condition, she intuits from his unwonted abandon that life will never be the same again.

That’s it – Old Hubert is now an intimate part of their lives. And, to be honest, sharing their bed with a stranger had never been on their secret desire list… let alone with an old Englishman, however knighted he may be!

***

Aure had sensed something was up long before the revelation of the diagnosis. Although she couldn’t tell precisely what was wrong with her beloved Double-Click, she knew he was different. It was more than mere intuition – her sharp eye had detected the telltale signs.

Now that the truth is out in the open, Aure has no intention of hiding it. She had to keep a secret as a child and it took her a long time to get over it. She now wants to avoid a repeat experience at all costs. She grew up without a father and it was nearly forty years before she could talk about it. He wasn’t dead, he even had a long life; he simply chose not to disclose an extramarital affair. Was it to spare his lawful wife the unnecessary grief? Probably. Besides, is lying by omission really a lie? After all, she never asked any questions.

Aure’s extraordinarily kind mother, whom the grandchildren have renamed “Angel of the Sun,” made up for her absent father. And although she raised Aure by herself, she did a better job than most mother-and-father couples. Aure is now proud of her unusual upbringing, but back then she mostly felt different from the other kids – and this weighed heavily on her heart.

Aure met Double-Click for the first time during a night out with friends. She was instantly drawn by his kindness and thoughtfulness. She even found him funny. He did not seem to mind about her family situation; in fact, it looked like he wanted to repair the damage caused by the Absent One, but it ran much deeper than he thought – the roots of her angst had fossilized. It took him seven years to propose to her. She went through moments of doubt, to the point of wondering if he really was as unaffected by social conventions as he had claimed. A diffuse sense of guilt dampened her usual active and energetic self for a while. Despite being a talented artist, she had no desire to emancipate herself through work. She wanted a big family, not to make her mother’s dream come true but because she knew it would make her happy.

Double-Click’s encounter with Old Hubert was like a bad reenactment of the past. She had just gotten rid of her father’s ghost, and now the man of her life whom she saw as invincible was threatened by an unexpected illness. Her initial dismay was soon eclipsed by other concerns as she realized that their lives were about to be upended.

***

Double-Click remembers when he and Aure sat with their elder children Anaïs and Rudy in the living room on Avenue Émile Pouvillon to break the news to them that life isn’t always as rosy as their mother’s lipstick. They tried their best to keep their emotions in check, and chose their words carefully to sound reassuring, Anaïs and César perceived their underlying fear in the face of a mysterious but very real disease.

Raising children is a humbling task, Double-Click told himself as he realized that trying to conceal his own anxiety to reassure his two teenagers was having the opposite effect.

The news shook them up of course, as it did Antonin and Max when they were later let into the secret. They, too, have since learned to put on a brave face, but their direct questions and unconscious remarks betray concerns that Double-Click wishes he could have spared them. He guesses the silent apprehension behind their joyful attitudes and increasingly sharp jokes. They certainly know how to surf the Net, and Hadopi does not monitor the flurry of shameless patients making crude confessions on multifarious medical sites. They must have found the news of their dad’s illness quite daunting indeed…

They preferred the good old, normal version of their Double-Clout – as they had facetiously nicknamed him even though he never laid as much as a finger on them. They wished they could turn the clock back to when things weren’t so bad after all. And what if their father’s condition was hereditary?

***

César and Anaïs had a chat together after Double-Click and their mother broke the news to them in their favorite room. The white marble fireplace will remain etched in their memory, along with the blond parquet floor, the triple oval-shaped concentric moldings, and the six large and clear windows offering a view of the 113 meter-long avenue Barbey d’Aurevilly whose buildings overlook the Eiffel Tower. Similar in style yet all unique, the magnificent cut-stone edifices echo their own stately residence at 2 avenue Émile Pouvillon, even more majestic in their eyes. The forever kingdom of their childhood.

They had been exemplary overlords, lavishly entertaining their friends, celebrating Christmases, christenings and communions, opening the ball under the benevolent-yet-watchful eye of Aure, the beloved mistress of all their ceremonies. They shared so many happy times as a family and with their friends that their laughter and giggles put a smile on the walls.

Double-Click’s desk stands with its back to an upright piano in a corner of the living room. They often wonder why he spends so much time on his computer. Is it for his job as a consultant? And anyway, as their friends always ask, “What is a consultant?”

They wonder about that strange day when their role as the elders was rehabilitated, after being temporarily jeopardized by their fast-growing-up younger siblings Antonin and Max. They could tell Double-Click’s announcement was important from his solemn tone of voice. He had seemed absorbed in his thoughts and had barely smiled when, after hearing of Old Hubert’s arrival, César tried to lighten the unusually solemn atmosphere with a joke along the lines of “we won’t let you cut the pizzas anymore if you start shaking too much!” Shaking – the emblematic symbol of his pathology.

After announcing his illness to his two older children, Double-Click walked Anaïs back to her studio avenue de Suffren where she had recently moved in above her grandmother Odette’s apartment.

Independence is all well and good, but living alone can be tough sometimes! Her friends have all moved on and taken different higher education routes according to their aspirations. They still see each other from time to time, but the days when they used to meet up at the school gates every morning were well and truly over… It’s hard to be alone, looking up Old Hubert on the Internet. It all seems so unfair. Old Hubert has nothing to do with Double-Click. They have nothing in common, nothing to share – the Englishman knocked at the wrong door. Her father doesn’t belong to that Hubert guy, he has no right over him. He is her Double-Click, the one who used to accompany her to school, help her with her math homework, tease her – the one who loves her like a father loves his daughter.

She is also thinking about her upcoming 20th birthday. She’d like to have a big party with all her friends, and she hopes that handsome DJ who was at her cousin Cam’s party will come too. Sure, he had a Pokémon name, Chikorita – but it doesn’t really matter when your own father is called Double-Click.

Strong-willed and pragmatic as always, Anaïs finds a lot of comfort in the words of Slim, Double-Click’s new physiotherapist.

8. SLIM

Zlata!

The submarine sonar humming from deep inside Slim’s pants pocketis emitted by his phone, an accessory as essential as his BMW C1 on which he races from one patient to the next without the burden of a helmet.

Slim brings the device to his ear with his left hand without letting go of his bedridden patient’s leg:

“Hello, could I speak to Slim, please? I am calling on the recommendation of Dr. Z.” (Silence)

Slim is perplexed – he swore he wouldn’t take any new patients.

And yet, a week later, Slim finds himself parking his scooter outside a beautiful Haussmannian building at the corner of avenues Bourdonnais and Émile Pouvillon. He goes up to the third floor and is ushered into an oval-shaped living room with windows overlooking the Champ-de-Mars to the south and a jammed intersection to the northeast. Double-Click looks really young, and his wife looks even younger.

After brief 
introductions, he tries to reassure them a little by explaining that the pathology does not significantly reduce life expectancy and that regular stretching helps maintain muscle flexibility – not to mention, as with any disease,thebenefits of a positive attitude.

As it always happens when patients are still reeling from the shockof their diagnosis, Slim struggles through the first sessions. He tries to reassure Double-Click and answer his anxious questions about the evolution of his pathologyas best he can while looking out for any symptoms that may help in pinpointing his patient’s condition, as some forms of it evolve more quickly than others. But he chooses not to share this information with Double-Click just yet.

It took a few months for Double-Click’s initial shock to subside, during which time he learned to identify and tame the – then – mild manifestations of the disease. But he still feels like he is journeying with a stranger, a transient passenger. He can’t get used to the idea that he is suffering from a chronic disease, in other words, one that is incurable– three seemingly harmless syllables whose significance becomes striking to whoever is thus affected.

***

Slim rings the bell, and the door opens. As usual, he lays his coat on the entrance bench and shows Double-Click some pictures on his phone. It has become a ritualbetween them.

Slim is a handsomeman who forms a lovely couplewith his sweet and charming Celia. They have just given birth toan adorable and energetic Giuletta, a beautiful baby loved and cherished by her parentsjudging by the number of pics on Slim’s phone.

Slim is now very much a part of Double-Click’s life, ever since Dr. Z asked him to turn Double-Click into a contortionist to claim the sought-after title of “Elastic Man” in reference to the most flexible woman in the world, “Elastic Woman,” better known as “Zlata.”

Let’s be honest, it seems impossible to surpass the unsurpassable Zlata; still, Double-Click clings to this goal because it’s worth it, as Slim explained at a recent conference:

“Most patients have difficulty initiating movements, especially those requiring precision and semi-automatic gestures such as walking or writing.”

Slim added that patients with this condition must absolutely remain active if they want to maintain their quality of life– and his words stayed with Double-Click.

All set for flexibility. As for slowness, Double-Click won’t ask an already snowed-under Slim; he shall call on the great Arturo Brachetti instead. Indeed – and although he hopes it will never come to it – buttoning his shirt in the morning takes him so long, and longer every time, that he might one day end up fastening the last button at bedtime.

***

Slim and Double-Click meet once or twice a week. As they get to know each other better, they realize that they share the same sense of humor and have many interests in common. Slim is happy to visit Double-Click and vice-versa, but the physiotherapist never loses sight of his initial therapeutic mission.

At a conference
, Slim displays a series of photos showing Double-Clickstruggling to perform various flexibility exercises, his face covered by a Smiley to preserve his anonymity. As he returns to his seat in the audience, he is congratulated by the young woman sitting next to him. They get talking. She works at the Hospital Salpêtrière.


9. MONA

A month after the diagnosis fell, Double-Click contacted a specialist in “motivational disorderswho goes by the name of Mona. Coined at a time when the word “suffering” was persona non gratathe term was trending in psychiatric circles to indicate depressive tendencies. Feeling quite uneasy but knowing he had to open up, he first quoted Steve Jobs: “Sometimes life’s going to hit you in the head with a brick.” She nodded without saying a word. Her job is precisely to speak with those who got hit in the head with a brick – or worse. Enough to compel some to wallup.

She takes few notes but Double-Click invariably feels she is listening attentively, whether he talks about his travels, his concerns for his children, his mother, his marriage, his job.

She is an accomplished practitioner who knows exactly when Double-Click tries to sidestep the harsh and unsightly reality, the insidiously unsettling truth.

A therapy well worth a little poem.

My birthday was yesterday.

Today is another day…

The day they name my oppressor,

Like a time-warp usurper


An old folks’ condition affecting the younger

To get back at junior for targeting senior?

Spiteful hospital


My kingdom for a shrink.

Turns out it’s a she-shrink.

I speak, I unravel!

She listens as if I were a marvel.

Her smile is the pill.

***

Mona loves her job. She finds the human psyche fascinating and considers soul and spirit as one.

She has been Double-Click’s therapist for a few years now. He comes to see her at the fancy of his moods. Mona recalls their first session.

He was one of her first patients, after she graduated. She felt a little intimidated, but he was far too troubled to notice. He quoted Steve Jobs as if to make it easier on her. He had just found out about his disease, and the diagnosis had upended his outlook – overnight. He who was usually so confident, so proud of his success, saw what he had taken for an invincible armor protecting him come undone like a soap bubble. He poured out all his fears, natural daughters born of his forced union with his disease. They had grown, hidden away, feeding on dark thoughts that Double-Click could no longer dispel. Mona was used to it. She pacified him while helping him face his fears.

The sessions succeeded one 
another. He learned to overcome his reserve and open up. He often walks into her office with a calm demeanor, pretending all is fine. But she senses something is not quite right, and a few minutes later, his words no longer hide his trouble. Confiding brings comfort. Only a few stubborn thoughts won’t come out – they are simply too painful. The magic of his earnest self-mockery keeps them at bay.

Sometimes she doesn’t hear from him for weeks. It probably means that he’s fine, but you never know… He could at least.


10.    ZORRO

Double-Click has an appointment with Dr. Z, his neurologist since he was first diagnosed. The practitioner has extensive dosage knowledge and is well-versed in the art of mixing drugs. “Balancing” a patient’s treatment – as they say in the trade – requires as much finesse as it does to shake a Caipirinha capable of washing away your sorrows without getting you drunk.
Dr. Z is a medical authority. In addition to caring for his patients, he is concerned about the challenges encountered by their loved ones when dealing with a condition like Double-Click’s. And rightly so. Dr. Z is right to care about the family circle – meaning the collateral victims of the patient, those whose mission is to grin and bear it.

They don’t complain, but everybody needs a little TLC from time to time. Thus, “caring for the carers” has become Dr. Z’s motto. But let’s think of them as the “loved ones,” no need to give in to excessive pathos with words like “caregivers,” as if one were on death row.

***

Dr. Z has made up his mind this time: he will retire in one or two years at the most. He has been talking about his impending retirement for months, but he finds it hard to give up on his calling, and his patients finally managed to convince him that there’s no need to rush into anything. Still, he’ll have to set a date someday.

Curious to know how many patients he treated in his long career, Dr. Z turns to the Internet – easier than counting. There was the case, blown out of proportion, of a French physician who saw 91 patients in one day. That times 200, i.e. the number of days in a year, means he would clock up 720,000 consultations over 40 years.

An American practitioner who asked himself this question before Dr. Z went through appointment diaries over periods of fifteen to twenty years. He came to the likely figure of forty thousand patients throughout the career of a well-established physician.

Slightly unsettled by the high numbers, Dr. Z lowers his own patient-count to somewhere between fifteen and twenty thousand as his specialty requires longer-than-average consultations.

If Double-Click knew of these figures, he might be more lenient whenever Dr. Z repeats the same questions from one appointment to the next. No doctor can keep in mind every detail of their patients’ lives. On the other hand, no patient can imagine being just one among many others. And yet…

Dr. Z walks Aure and Double-Click to the door. The latter appreciates his practitioner’s dry sense of humor. Once, in late spring, he told Dr. Z that he wanted to swim a lot to stay in shape. To which the doctor replied that two of his patients who were suffering from the same disease had drowned the previous summer.

***

Since then, Double-Clickonly ever swims where his feet can touch the bottom, and always within eyeshot of his family.

Dr. Z’s specialty is indeed special: it entails warning patients about the risks of certain physical symptoms, but without worrying them so much that it crushes their high spirits. And as it turns out, Dr. Z is very good at getting that type of message across, with a calm voice and just a hint of wit.

***

Tired after his consultation with Dr. Z, Double-Click kills time surfing the Internet while waiting for bedtime. He comes across a video by the INA[1]: the first episode of The Shadoks[2]. He bursts out laughing.

“It hasn’t aged at all!

He wistfully recalls his childhood when he would sit with his parents and sisters every night in front of the TV to watch an episode, too short as always.

The Shadoks had mottos that seem to have been specially devised for Double-Click and his fellow sufferers.

Waking up: “I get tired of sleeping!”With Slim, his physiotherapist: “If it hurts, it’s good for you!”

Researchers could also do with: “If there’s no solution, there’s no problem.

”And if Double-Click’s condition takes a turn for the worse: “Sorry, I forgot I had amnesia.”


[1]INA: French National Audiovisual Institute (Institut National de l’Audiovisuel).

[2]Animated television series created by French cartoonist Jacques Rouxel which caused a sensation in France when it was first broadcast in 1968–1974.


[1]Medicine developed by MSDFrance