SUNDAY, DECEMBER 9, 2012
That’s according to Katherine Ashen-burgin her marvellous book,
The Mourner’s Dance
.“The death is really and truly part of the living that continues, and it all fallswithin the same house,” a womannamed Donna Burke tells Ashenburg.Death was as constant and familiar asChristmas.Today, medical advances have beatenback those infectious diseases andgreatly prolonged our lives. Most of usdie in old age now of heart disease orcancer. While 80 per cent of deaths in theUnited States occurred at home in1900, the reverse is true now: 80 percent of deaths occur in hospitals orold-age homes, according to
The Last Dance: Encountering Death and Dying
,atextbook belonging to bereavementcounsellor and former pediatric oncol-ogy nurse Andrea Warnick, a closefriend of Stella’s family.Few of us have wakes anymore. Wesay goodbye to our loved ones in anoth-er institution — the funeral home.Culturally, we treat death as a failure. We forget our dead, unlike traditional African culture, which teaches theyoung to remember the names of theirancestors going back generations. Wedon’t have any national holidays likeMexico’s Day of the Dead, when fami-lies host all-night fiestas at their rela-tives’ gravesites. As a society, we’ve forgotten whatdying looks like. Warnick says this isthe basis of our fear of death.“The human body knows how to die. We’ve medicalized it so much, we’veforgotten that. It’s important for peopleto be around death more. The more weare exposed to death, the less anxiety over it we’ll have as a culture.” Aimee and Mishi have already brokencultural ground as a gay married cou-ple. They are doing it again by keeping Stella at home to die rather than shut-tling her from one hospital to anotherfor medical treatments. And while Stella is only 2, her dying process strangely resembles that of anoctogenarian. DIPG is stripping her of one faculty after another. She can nolonger walk, her arms shake, she’s lostmuscle control of her neck. Althoughshe had just mastered the potty a few weeks after her diagnosis, she’s back towearing diapers. She’s on a cocktail of medications and has to be spoon-fedher meals. Her words are disappearing. And while she has moments of vibran-cy, she also has long lapses of semi-consciousness, when she stares blankly at the wall.Her parents often say she’d fit in at anursing home.
hot afternoon in lateMarch, when people in Toronto areparading around in T-shirts and san-dals, Stella’s friend Flora Hay Draudeisover for a play date.The two have been friends for most of their lives, since their mothers met at amoms’ group. Flora, so slight andblond, was the quiet and cautious onebefore. Our redhead was the loud, wildone.Now, their roles have reversed. Stella’s voice has all but left her.They’ve already had their finger- andtoenails painted four different coloursand now they are playing “Is anybody home?” in the little wooden playhouseStella’s grandfather Poppa built in herbackyard.They giggle side by side in the dark asMishi knocks on the door.“It’s my turn,” Flora announces, run-ning outside in her bare feet andknocking. “Shall we all go outside for awalk?”Stella hasn’t been able to walk forseven months. Mishi carries her out-side and gives both girls turns on theslide, holding Stella in a firm grasp forthe trip down.If Flora is confused by her friend’scondition, she doesn’t show it. Formonths now, her parents have mixedbooks such as
When Dinosaurs Die
intoher nightly routine. They talk regularly about Stella’s tumour and how soonher friend’s body won’t be here any-more and they will all be sad. Hermother, Karen Hay Draude, says she’samazed by how both girls have adapt-ed. While Stella’s pending death hasheightened her own insecurities, Florathinks it’s normal. And so does Stella.“Stella’s so brave because Flora is sobrave,” Mishi says as she guides Stelladown the slide As a rule, 2-year-olds are exhausting.Their play dates are a relentless paradeof activities. This one is no different.Mishi, her 4
-months-pregnant belly protruding, keeps up the pace.They charge downstairs to Stella’s oldplayroom to paint. Mishi sets down twopieces of paper, two brushes and somepaint on a miniature yellow table. Shesits down with Stella on her lap anddips one brush in green paint.Two weeks ago, Mishi made a discov-ery while trying to force a brush intoStella’s one functioning hand. Stellakept trying to bite the brush. At first,Mishi thought she was being naughty.Then she realized: Stella was offering adifferent solution. With her mouth, Stella moves thebrush back and forth across the paper.Flora looks over and bites her brush.“Flora is going to paint with hermouth, too, see Stella,” Mishi says,manually tilting up Stella’s forehead soshe can see Flora. “Isn’t that funny?”
It is Stella’s birthday. Sheturns 3 today.She sits on Aimee’s lap on the frontstoop in a splash of cold sunshine,feeding the birds. Her little brotherSam, now 6 months, sits happily in aplastic baby seat beside them. This istheir morning ritual. Aimee rips bread into pieces andtosses them onto the driveway. It’s hardto imagine a more urban setting, with aregiment of black garbage bins andnavy recycling bins lining the street.But sparrows appear: one, two, three,four, five, all hopping about the con-crete and the small yard. The crabappletree, its purple leaves adorned withEaster eggs, becomes a symphony of chirping. Aimee tilts Stella’s head up.“You see them, right?” Aimee says.She gets no answer. Stella’s pupils dartback and forth. The cranial nerve con-trolling our eyes’ lateral muscle origi-nates in the brain stem’s pons region,where Stella’s tumour is growing. As aresult, most children with DIPG devel-op double vision.“See them coming closer and closer?”Stella’s eyes light up and her lips part,revealing her row of neatly separatedwhite teeth.“Three years ago today, your momwas happy because she finally got theepidural,” Aimee says of Stella’s reluc-tant emergence from Mishi’s body.“She had to wait five hours for it.”The family didn’t celebrate Stella’ssecond birthday with a party. She wasso little, they figured she wouldn’tremember it. That was two monthsbefore she was diagnosed with DIPG,when they still had a lifetime of birth-days ahead.Since her diagnosis, Stella has cele-brated her birthday with a big party every few weeks. “Happy Birthday” haseclipsed
theme song as her favourite tune.Last weekend, her mothers threw herahuge third birthday party in the poolat Variety Village. More than 60 peoplebobbed in the water, each taking a turnholding Stella.Later, most of them wept as they sang over her birthday cake.That day of the epidural was Mishi’s30th birthday. Today is Mishi’s birth-day, too. But she’s no longer celebrating it. Today is a day to charge through andforget.Holidays are triggers for Mishi. They are life’s yardsticks. She can’t reachthem without measuring where she’sbeen and where she is going. Ayear ago, Stella never watched birdsplacidly from anyone’s lap. She chargedafter them, laughing maniacally.Is Stella still that person, trappedinside her tomb-like body?Jean-Dominique Baubysuffered afate similar to that of Stella. At 43, theformer editor-in-chief of
had asevere stroke that flooded his brainstem. The result was “locked-in syn-drome” — full paralysis of the body apart from the ability to swivel his neck and blink his left eye. He couldn’t movehis mouth, his tongue, his hands. Butlike Stella, his mind was untouched.He wrote a poetic memoir called
The Diving Bell and the Butterfly
by blinking that eye. The book, later turned into anaward-winning film, is both beautifuland painful to read. He describes theagony of not being able to talk, tastefood, turn the soccer game back onafter a nurse shuts the television off,reach out and ruffle his son’s hair. “My condition is monstrous, iniquitous,revolting, horrible,” he writes. He canno longer be funny. Blinking out lettersis too slow for wit. When his lover askshim on the phone if he is there, hestarts to wonder if he is anymore.
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Stellaclutches herhomemadeStella doll whilenapping on thecouch in lateMarch. Hertumour isstripping herof her faculties.
Stellagets a kissfrom Aimeewhile enjoyingawarm Mayafternoon.Her eyes havetroublefocusing andshe can nolonger sit upon her own.