Jake Dowell story from May, 2011

7/23/2019 Jake Dowell story from May, 2011

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JAKE DOWELL


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THE NASTY SCAR OVER

Jake Dowell’s left eye was,like almost all the road maps

NHL players wear on their faces,well-earned. It required 40 stitches

to close, including the ones under thesurface of the skin. The gash itself went

right down to the skull. He missed three shiftswhile the medical staff worked to stem the blood

low and reattach the lap of skin.As the Chicago Blackhawks were furiously chasing a

playoff spot in late March, Dowell found himself caught up in abattle along the boards with Jarkko Ruutu of the Anaheim Ducks.

Ruutu grabbed Dowell from behind in a bear hug and, as the twoplayers fell forward, Dowell recalls the feeling of powerlessness in the

split second prior to him slamming his head against the ice. Ruutu had beenholding both his opponent’s arms, preventing Dowell from breaking his fall.For that brief moment in time, Jake Dowell experienced the kind uncertainty,

fear and sheer helplessness his father, John, and older brother, Lucas, face almostevery day. There are some nights when all 270 pounds of John Dowell falls out of his lift

chair and he’s as helpless as his son was when he was tackled by Ruutu.There are just as many days when the voices in Lucas Dowell’s head simply won’t go away

no matter how many doses of medication he takes.And there are the days when Jake Dowell has what he describes as “pity parties.” Sometimes he’ll

walk around the suburbs of Chicago for two hours with his dog, resenting the fact he was cheated out ofnormal relationships with his father and brother. Then there are the days when Dowell worries about his

own mortality and the fate of his children, should he have any.As an elite athlete, Dowell often experiences muscle twitches, particularly after a long workout. For Dowell, an

uncontrollable and involuntary twitch of the inger or a quadriceps muscle while sitting on the couch could be noth -

ing more than the product of an overworked body. Or it could represent the presence of a rare genetic disease that willrob him of his body and mind before it slowly kills him.

SOMETIME SOON JAKE DOWELL WILL LEARN IF

HE HAS THE DEADLY DISEASE THAT HAS CRIPPLED HIS FAMILY.

IT’S A HUMBLING, PRECARIOUS EXISTENCE

W O R D S B

Y K E N

C A M P B

E L L

P H O T O

B Y

F R A N C O I S

L A P L A N T E

– MONTREAL



JAKE DOWELL

F R A N C

O I S L A P L A N T E / F R E E S T Y L E P H O T O G R A P H Y

“It used to scare the heck out of me because it would hap-pen all the time,” Dowell said. “I would just think to myself, ‘I’mdoomed.’ ”

It’s an awful lot of weight to carry around for a 26-year-oldNHL rookie, one who is inally inding his way in the best leaguein the world. After graduating from the University of Wisconsin,Dowell slugged it out for three years in the minors and some-times felt as though he was buried there for good. But the combi-nation of his perseverance and the Blackhawks’ cap constraintsinally gave him the chance to ill a role on the fourth line and killpenalties, both of which he has embraced with evangelical zeal.

Some nights he plays 15 minutes, some ive. On a team that’snot known for its toughness, he leads the Hawks with nine ight -ing majors this season. That’s one more than enforcer John Scott,to whom Dowell surrenders eight inches and more than 55pounds. Dowell has played much of this season with a brokenbone in his ankle and a sprained meniscus in his knee, but thoseare minor annoyances when you consider what he has endured.

To see and speak with him, you wouldn’t know the trials Dow-

ell has encountered on his path to the NHL. After all, it’s not asthough it’s a topic of regular conversation with his teammates,some of whom know almost nothing about his personal and fam-ily history.

But for the better part of the past decade, Dowell has livedwith the specter of Huntington’s disease, a genetic disorder inwhich nerve cells in the brain are irreparably damaged, caus-ing various parts of the brain to deteriorate. Once the diseasesets in, a person’s abilities to walk, think and reason are slowlystripped away as the body and mind continue to decline. Finally,it gets to the point where the patient is effectively paralyzed andmust be fed through a tube. It can last 10 to 20 years before thepatient eventually dies, usually of an infection or starvation orsometimes suicide. Some describe it as the worst of Lou Gehrig’s,

Alzheimer’s and Parkinson’s.“No disease is better than the next,” Dowell said, “but this one

is as bad as it gets.”

It has already taken hold of his 55-year-old father, who can nolonger speak clearly and relies on 24-hour care, most of it from hiswife and Jake’s mother, Vicki. The disease almost always beginsto manifest itself somewhere between the ages of 35 and 55, butthere can also be juvenile-onset Huntington’s, which brought onbipolar schizophrenia in his 28-year-old brother and conined theyoung man to a group home near his parents in Eau Claire, Wisc.

On top of all that, Jake Dowell could be carrying the Hunting-ton’s gene around with him right now.

Those whose parents have the disease have a 50 percent chanceof developing it themselves, but Dowell has yet to be tested. Witha marriage to iancee Carly Sturges on the horizon in the summerof 2012 and children sometime after that, Dowell is well awarethe time is nigh when he must ind out the reality one way orthe other. If a person is carrying the gene, there is a 100 percentchance he or she will ultimately get the disease.

Vicki Dowell says she knows in her heart Jake isn’t carryingthe Huntington’s gene, which actually doesn’t provide a wholelot of comfort to her son, even when he’s feeling optimistic.

“She can be as sure as she wants,” Dowell said, “but that doesn’tmake any difference. I always kind of expect the worst and hopefor the best.”

The way Dowell sees it, had the disease been juvenile-onset,he would have been suffering with it by now. And if it surfaces atthe stage of life it does for the vast majority of those who carrythe gene, that still leaves him at least 10 years in which to enjoylife and carve out a lucrative and rewarding NHL career. And eventhough there is no cure, nor is there one on the horizon, modernmedicine and stem cell technology can move very quickly.

On one hand, many people in Dowell’s shoes would want toknow their fate. But others who are at risk of carrying the genedon’t want to know, arguing there would be little motivation toeven get out of bed in the morning knowing they would ultimate-

ly be rendered an invalid. But after telling his mother repeatedlyas a teenager, “that he wouldn’t have a test tube baby,” Dowellhas decided he will ind out before he and Carly have children.

“I ALWAYSKIND OF EXPECT

THE WORST

AND HOPEFOR THE BEST”



JAKE DOWELL

A C T I O N : B I L L S M I T H / N H L I V I A G E T T Y I M A G E S ; O T H E R S C O U R T E S Y O F D O W E L L F A M I L Y

The technology now exists where even if a man is carrying thegene, it can be weeded out from the sperm for the purposes of invitro fertilization.

As you can see, Dowell’s situation isn’t exactly the grist for lightdressing room banter. His teammates know about his situationperipherally, but there are few people to whom he really opensup about it. One of them is Los Angeles Kings defenseman DavisDrewiske, Dowell’s best friend and teammate from the 2005-06Wisconsin Badgers team that won a national championship andgraduated seven NHL regulars. Another is Blackhawks veteranbackup Marty Turco, who freely admits he’s totally unqualiiedto render advice on what Dowell should do.

“You can’t put yourself in somebody’s shoes, you can just bethere for them,” Turco said. “I don’t think I can intelligently beginto guess. It’s got to hit you right in the face and it has hit him rightin the face.”

Growing up in Eau Claire, Dowell enjoyed a typical midwest-ern childhood full of sports. John, a former Division III linemanfor the University of Wisconsin-Eau Claire football team, was thekind of father who coached his sons in every sport and was in-tensely involved. Part of the reason was his own father battledalcoholism and depression until committing suicide at 35. John’sgrandmother had a severe nervous condition that went undiag-nosed and untreated. It was only after John’s Huntington’s diag-nosis in 2002 that the family connected the genetic dots.

John co-owned a collections agency and Vicki was a special ed-ucation teacher. Jake worshipped his older brother and was mo-tivated in hockey to be as good as Lucas was. The two were bestfriends who would do typical brother things like horse aroundin the water at the cottage and endlessly recite lines from theirfavorite movies.

When Lucas hit 14, everything changed for the Dowells. Hestarted leaving school unannouncedand bolting from his bedroomwindow at night. Right aroundthe same time, John trans-formed from being an op-timistic and hard-workingprovider to an ill-tempered,angry and brooding man.

Because Vicki had to call the

police when Lucas disappeared,he became entangled in the pe-nal system and was branded ajuvenile delinquent.

Vicki suspected men-tal illness, which EauClaire’s district at-torney – whoseson once playedhockey with

Jake and Lucas – told a judge he was faking. When Lucas was 17,he was diagnosed as a bipolar schizophrenic, but it wasn’t untilsix agonizing years later that it was tied to the juvenile onset ofHuntington’s disease. While still functional, Lucas often hearsvoices and mumbles to himself almost constantly. His IQ is nowin the high 70s and his capacity to learn anything new has essen-

tially been wiped out.Lucas’ problems were exacerbated by the fact John, for rea-

sons nobody could igure out, was going through drastic changesin his own personality. He would threaten to divorce Vicki overthe most insigniicant things and generally walked around with ascowl on his face. One day he decided arbitrarily that he could nolonger work with his business partner and sold out his half of thebusiness he had worked 20 years to build. He tried several otherventures, but essentially lost most of his money.

There was a time when John was so aggressive and moodythat Vicki told Jake she was going to leave her husband, but Jakepleaded with his mother to stay because of all the upheaval in hislife. Three months later, John was diagnosed with Huntington’s.

“Here I am pulling back in my relationship with (John) because

I can’t cope anymore,” Vicki said, “and then I ind out he has thisillness and I have to throw myself back into what I need to be forhim. It was really hard.”

THE DOWELL FAMILY – VICKI, JAKE, LUCAS AND JOHN – HAVEGONE THROUGH A LOT, BUT WILL ADD ANOTHER MEMBERSOON IN JAKE’S FIANCEE, CARLY.

“YOU CAN’T PUT YOURSELF INSOMEBODY’S SHOES, YOU CANJUST BE THERE FOR THEM”

– MARTY TURCO

For more on Jake Dowell,go to thn.com/dowell



JAKE DOWELL

F R A N C

O I S L A P L A N T E / F R E E S T Y L E P H O T O G R A P H Y

Right around that time, Jake left to join the U.S national teamdevelopment program in Ann Arbor, Mich., and hasn’t lived athome on a full-time basis since. Being shielded from the day-to-day struggles of Huntington’s has probably helped him to focuson his hockey career, but the guilt of it all weighs heavily on himat times. The same night Jake was kicking back in a boutique

hotel in Montreal preparingto play the Canadiens, Vickiwas back in Eau Claire feed-ing her husband, giving himhis meds and taking him tothe bathroom.

“I think about that quite abit actually,” Jake said. “That’sbeen one of the hardest thingsthe past couple of years. Thereare times when I’m on top ofthe world with hockey andI have times where I think it

can’t get worse with my fam-ily and they’re absolute polaropposites. I try to make sure Istay in the middle as much asI can.”

Until Jake went home tovisit at Christmas, he wasstrong enough and his fatherwas capable enough for Jaketo take him to the bathroomwithout his father going

from the lift chair to the wheelchair to the toilet. But now Johnhas almost zero coordination and strength. Most days are spentsleeping and eating, with the exception of the nights the Black-

hawks play, nights for which John lives. Trying to carry on a con-versation with John if you don’t already know him is impossible.It’s like speaking to a toddler whose parents seem to be the only

ones who understand what he’s saying and can repeat it back toyou. The fact he can no longer use the toilet without help and hasto have a baby monitor in his bedroom so Vicki can hear if he fallsmeans she is essentially caring for a 55-year-old infant.

John will ultimately die of this disease, but at the momenthis heart, kidneys, lungs and liver are in perfect working order.Although he is beginning to have trouble swallowing, he couldconceivably live up to another 10 or 15 years. He will have to beinstitutionalized at some point, but Vicki, who teaches part-timeat Wisconsin-Eau Claire, wants to keep her husband at home aslong as she’s able to cope with the physical and mental demandsof caring for him. Many with Huntington’s eschew a feeding tubeand die; both Jake and Vicki are unsure what John will decide.

“I hope that when he gets to the point where he can’t eat foodanymore that he’s deteriorated enough to not want to (have afeeding tube),” Vicki said. “I don’t want that for John, but if he can

talk to me and tell me that he can’t eat, but still wants to be alive,I can’t tell him he can’t do it.”

All of it makes for a perilous future for everyone involved inthe Dowell family, including Jake’s iancee. One of Jake’s biggestfears through college was how he would ever meet someone whowould be on board in dealing with all of this and not be scaredoff. After all, Vicki Dowell never signed up for any of this, butJake’s potential life partner would be fully aware of the potentialand real problems that come with the disease.

Carly and Jake met through a mutual friend during Dowell’sirst pro year with the Rockford IceHogs of the American Leagueand have been together ever since. She has already decided re-gardless of what the result of the Huntington’s test ultimately is,Jake is the person with whom she wants to spend the rest of her

life. Jake was upfront about the situation early in their relation-ship and Carly realized early it would be something they wouldovercome together.

“THERE ARETIMES WHENI’M ON TOP OFTHE WORLDWITH HOCKEYAND I HAVETIMES WHEREI THINK ITCAN’T GETWORSE WITHMY FAMILY”

THE LUXURIES OF THE NHL CANNOT KEEP DOWELL’SMIND OFF THE HARDSHIPS OF HIS FAMILY IN WISCONSIN.


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JAKE DOWELL

“It didn’t take me longto realize I wanted to bewith him,” Carly said.“Right from the begin-ning, I realized he wasa special person and

I knew I wanted to bewith him every secondI could. I was worried Imight have scared him,actually.”

On the ice, thingscouldn’t be going anybetter for Jake Dowell.Blackhawks GM StanBowman made numer-ous trips to Rockfordover the past coupleof years to convinceDowell he was still in

the Blackhawks’ plans.Dowell was named cap-tain of the farm team ayear ago and has madehimself an invaluablerole player for the big squad this season. It’s an enormous year forhim, though. He’s inally earning NHL money, albeit just $25,000more than the league minimum of $500,000. He’s due to becomea restricted free agent this summer and has set himself up for alonger-term deal at better money. Bowman has expressed a de-sire to keep him in the organization.

He is well-liked and respected by his teammates, largely be-cause he does a lot of dirty work for the Hawks. Turco, in fact,said he’s one of those versatile, hard-working players that teamswonder how they can live without. Chicago has not pressuredDowell to get tested, nor did Bowman say his uncertain long-term future would ever affect the organization’s plans for him.

One thing Bowman is most impressed about with Dowell ishow well he has been able to put everything aside to concentrateon playing hockey. He said that while Dowell had his momentsof doubt playing in the minors, because he was doing everythingasked of him and still not getting called up, he never complainedabout his situation and, instead of becoming sour, worked hisway up to being captain of the team.

Bowman, who wasinstrumental in draftingand developing Dowell,knows all about health-related uncertainties. In2007, at the age of 33,

he was diagnosed withHodgkin’s lymphomaand has since battledthe illness into remis-sion on two occasions.Last season, the fatherof Hawks right wingerTroy Brouwer suffereda brain aneurysm justprior to the team’sStanley Cup run.

“I think I can iden-tify with the fact thatyou’ve got to deal with

it, but you can’t let it af-fect your job,” Bowmansaid. “I never did and

Jake feels the same way.You can expend a lot of

energy worrying about things you ultimately have no controlover and that’s a lot of wasted energy. You take your treatmentsand stop feeling sorry for yourself and get on with it.”

As optimistic as Vicki is that her son will live a long and full life,she has contemplated how she would deal with a positive test.

“It would devastate me,” she said, her voice cracking. “It wouldbe the last straw. It would be taking away the one thing in my lifethat I still have left.”

John will continue to look forward to the days when his sonplays with Chicago and he can watch the games from his livingroom recliner. There are plans for the Blackhawks to sponsor aHuntington’s fundraiser next season and everyone is hoping Johnwill be able to attend the game. If he does, it will almost certainlybe the last time he ever watches his son play live. These days Lu-cas is clumsy and has trouble with manual dexterity, but it willget worse as the years pass. Then will come Jake’s life-changingdecision to get tested, likely within the next 18 months.

“I’m pretty humble, anyway,” Dowell said. “But this has all beena pretty humbling experience.”

DOWELL’S TEAMMATES LIKE AND RESPECT THE VERSATILE FORWARDBECAUSE HE GOES TO THE PLACES ON THE ICE MANY OTHERS AVOID.

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Jake Dowell story from May, 2011

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