9 december 201614 khaleejtimes.com/wknd 9 december 2016 15khaleejtimes.com/wknd

Against All Odds FrOm UN-AbLe TO AbLe

by KAreN ANN mONsy

She’S a United nationS hUmanitarian with a rare genetic diSeaSe that’S waSting her mUScleS away, bUt Cara ElizabEth Yar Khan iS alSo a daredevil, aboUt to embark on her moSt ambitioUS challenge yet: an expedition acroSS the grand canyon

W hen I meet Cara Elizabeth Yar Khan, she is standing in the lobby of her ho-tel with Cleopatra. No, not the resur-rected Egyptian queen. Cleopatra is Cara’s gold-painted walker: a con-stant reminder of the rare progres-

sively degenerative disease she was diagnosed with in 2006. She calls it her carriage.

“You should see the reaction I get every time I enter a room with it,” she laughs, feigning an exaggerated gasp for my benefit. “It’s not genuine fear,” she says, generously. “People don’t expect a young woman to be disabled… because of which they don’t know what to do, and so they freeze or say something stupid. It’s the unknown that unnerves them.”

There’s a fair bit of ‘freezing’ that occurs around us, as we pass hotel guests and staff on our way to the lounge on the 32nd floor. But Cara doesn’t mind. She’s too used to it. “Be-sides,” she says, concentrating on navigating her walker towards the nearby bank of elevators instead, “I have pret-ty thick skin.”

We settle down on a couple of couches, Cara’s ‘carriage’ faithfully positioned by her side. It’s a rather appropriate name, I think, considering her royal lineage as granddaughter of a former Indian princess, Sahebzadi Nafeesunissa. Born in Hyderabad, India, to an Indian father and English mother (but raised in Canada), Cara is a United Nations humanitar-ian and, now, post diagnosis, a global advocate for children and adults with disabilities.

Her earliest desire to become a humanitarian, however, dates back to when she was six, while watching a telethon to raise money for starving children in Africa. “My natural instinct at the time was to help those kids,” recalls Cara, who was in town to speak at the Global Pediatric Conference hosted by Al Jalila Foundation last week. “So, when I learned about UNICEF in social studies class, at the age of 12, I knew that’s what I was going to do: work for the organisation when I grew up.”

Cara started her international career in 2001 with the Unit-ed Nations World Food Programme in Ecuador and, in the last 15 years, worked in 10 different countries in various capacities, including being a fundraising officer and child protection spe-cialist for UNICEF. At 30, she was diagnosed with a muscular dystrophy called Hereditary Inclusion Body Myopathy (HIBM), an extremely rare genetic disease — there are less than 2,000 known cases around the world — that causes muscles to waste away at an accelerated rate. “My muscles look like Swiss cheese: they have holes in them,” says Cara. “They’re basi-cally disintegrating from the inside out.”

Giving her 10 to 15 years before she’d lose complete mobil-ity, doctors told her to quit her career, move back home to live with her parents and prepare for the worst. “I thought it was absurd,” Cara says. “So when UNICEF asked if I would be okay being posted to Angola, I said, ‘Sure, where is it?’ I didn’t even know where Angola was! My family and I needed an atlas to figure out,” she laughs. It’s an attitude that might, at times, beggar belief because, even after her awful progno-sis, Cara says she wasn’t depressed: just relieved to know

what she was up against. Clearly, no pity parties for this one. She rolls her green-grey eyes heaven-ward at the very mention. “God, no,” she groans. “I hate those! You cannot change a thing by sitting and moaning! To me, it was simply never acceptable to say that I couldn’t continue doing this — because I knew I had much to give.”

That was in 2007. By the time Cara went to China as part of the Sichuan Earthquake Emergency Response in 2008, her muscles had begun to deteriorate so badly, she needed a leg brace. Two years later, when she went to Haiti in response to the devastating earthquake, she was using two canes and two leg braces. She finally got her walker when she moved to the US about three years ago. But she refuses to label herself as disabled. “‘Disabled’ suggests that I am un-able. I am defi-nitely able to do a lot,” she says, with a sudden fierceness. “I just have different abilities from the next person.”

A lot of her boldness and strength comes from the way she was raised, says Cara. “My father never, ever, discouraged me — even with my disability. He taught me to be a fighter,

be independent, well-educated, and to respect myself. I had a really good foundation, so when I did get this disability, I had the right ‘coping mechanisms’ to deal with it.”

That’s not to say it was easy. It was a learning process for her parents to acknowledge her condition. In fact, in the be-ginning, no one was allowed to use the word ‘disability’ at the Yar Khan home. “Not because my parents considered it a stigma but because it broke my father’s heart that this had happened,” she explains. “He blames himself; he thinks he ‘gave this’ to me — but it’s nobody’s fault.”

Her father still dotes on her “like crazy” when they’re to-gether, offering to do everything for her, but she’s grateful that her folks didn’t give up on her or her dreams because of the

‘i’vE found purposE

bECausE of mY disabilitY’

phOT

O: d

hes

hAN

dU

mON

NEVER SAY DIE: Ever since her diagnosis, Cara has pursued a variety of physical activities, including (top to bottom) white water rafting, mountaineering and horseback-riding

to mE, it was nEvEr aCCEptablE to saY that i Couldn’t ContinuE with mY CarEEr [duE to this disEasE] — bECausE i KnEw i had muCh to givE”

9 december 201614 khaleejtimes.com/wknd

9 december 201616 khaleejtimes.com/wknd 9 december 2016 17khaleejtimes.com/wknd

Against All Odds FrOm UN-AbLe TO AbLecalled HIBM: Her Inescapable Brave Mission. “Calling it that is like redefining what that acronym means in my life. I live with HIBM everyday. Even after I cross the canyon, I will still be stuck with it; that’s why it’s ‘inescapable’. But that struggle doesn’t have to be awful. It can be this incredible source of strength and purpose. It might sound strange, but I would never want to lose the purpose I’ve found now because of my disability. So, in a way, I’m quite happy to be ‘stuck’.”

It’s easy to be enamoured by Cara’s never-say-die persona. But, through the film, she intends to share her rawest, most intimate thoughts about this unexpected life, in a bid to break down the “endless barriers” faced by people with disabilities. “People are so afraid to be vulnerable because they see it as a sign of weakness. It’s not. You have to be bloody courageous to be vulnerable. Why do you think people love The Ellen Show? It’s because she’s so honest. And people need to see that.”

Prior to the diagnosis, dancing was a huge part of Cara’s life. It’s one of the things she’s had to give up as a result of the disease — that and the ability to have children (“My body can’t support a pregnancy and adoption agencies won’t let me adopt because of my disability”). But all of this has also made her a bit of a daredevil. “I’ll try anything, even if I’m a bit scared,” she confesses. “When you understand what it means to lose abilities, and you know today is the best day of your life because tomorrow is going to be a little more worse, you don’t want to waste time.” On her agenda while in Dubai? Ride a camel. “I’ve heard it’s quite something!”

HIBM has given her both perspective and courage, cata-pulted her career into “a whole new universe” (as she puts it)… and is teaching her patience. “I am not a patient woman,” she huffs, with a self-deprecatory shake of her head. What is it that frustrates her most? “Time! I can’t be late for anything, but my legs don’t move as fast as I’d like them to. I’m con-stantly dropping things, constantly struggling to access plac-es… But then, I laugh at the situation and remember to be thankful that I can at least get around as much as I do.”

Ten years on since her diagnosis, Cara says her doctors are surprised that her upper body hasn’t deteriorated as quickly as her lower limbs. “Every patient is different,” she says, paus-ing to adjust a stiff leg and joking about how nothing is grace-ful anymore. “A huge part of it [my treatment] is mindset, but I also take care of my nutrition, stay physically active and I’m a strong believer in stem cell therapy.” Having undergone the treatment twice now, she has regained some abilities she’d lost: such as being able to lift her arms enough to tie her hair

into a ponytail, take something down from a top shelf or last longer on the stationary bike at her gym.

“Everything is hard,” she says. “But if you don’t do some-thing just because it’s hard, you’ll never get out of bed. I’m scared of failing too — but I have to try.” No surprise that her favourite quote should be one by contemporary painter Erin Hanson: “What if I fall? Oh, but my darling, what if you fly?”

(For more information on Cara’s upcoming Princess Rising expedition — set to take place in April next year — visit www.princessrising.com.)

karen@khaleejtimes.com

disease. “Parents of children with disabilities have to raise them to adapt to the world because the world isn’t adapting to us — not fast enough, at least,” she says. “My father has always been encouraging but I’ve also shown him, through the things that I’ve done, that I’m still the same person I was before this dis-ability, with the same dreams. It gives him courage to see how I’ve embraced this condition — but the truth is: I wouldn’t be doing any of this if he had clipped my wings. He didn’t.”

Unfortunately, that wasn’t a worldview shared by all. Cara tells of a female relative who’d once told her to abandon all hopes of a serious relationship. “This wheelchair is too much to be asking anyone to take on,” she’d said. “I was crushed,” says Cara. “Do we have so little faith in humanity to believe that a person with disability doesn’t deserve their own love story?” As it turned out, things did work out and Cara — a self-confessed hopeless romantic — is every bit the giddily happy newlywed to John Masters, a wounded army veteran she met through her work in Colorado last year.

“You wouldn’t believe the things people still say to me though,” she says. “I’ve had TSA agents at airports tell me I’m ‘lucky’ before commending John for being so good [as to marry me].” It shouldn’t be shocking or awe-inspiring that people with disabilities do things that every other person does, she notes. And yet it is. “It’s unexpected because we’ve not only hidden people with disabilities for so long, we’ve excluded them from society with our lack of proper infra-

structure and our attitudes. I think I understand why a lot of disabled people choose to stay home.”

Cara and her husband live in Colorado now, where she is the founder of her own consulting firm that serves local and inter-national charities and corporations striving for sustainable and impactful social responsibility. “Trump-land. I hate it,” she pouts, then softens, “But I love my husband, so it’s okay.”

The move to the US was a difficult one for her. “I struggled a lot trying to make as great an impact there as I would’ve on the field,” she says. It’s what led to her idea for the biggest and most ambitious challenge she’s undertaken yet: Princess Rising, a 12-day expedition across the Grand Canyon on horseback and white water rafts that will be filmed for a documentary

LOVING HER LIFE: (above, left

to right) Cara with her parents

on her wedding day; with

husband John Masters, who

she married four months ago;

(right) working for UNICEF

in Haiti

it givEs mY fathEr CouragE to sEE how i’vE EmbraCEd this Condition... but i wouldn’t bE doing anY of this if hE had ClippEd mY wings. hE didn’t”