'I've found purpose because of my disability'

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

by

Karen Ann Monsy

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Published: Thu 8 Dec 2016, 11:00 PM

Last updated: Wed 21 Dec 2016, 3:10 PM

When I meet Cara Elizabeth Yar Khan, she is standing in the lobby of her hotel with Cleopatra. No, not the resurrected Egyptian queen. Cleopatra is Cara's gold-painted walker: a constant reminder of the rare progressively degenerative recessive genetic disease she was diagnosed with in 2006. She calls it her chariot.
"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 with a disability with a walker. They don't know what to do, and so they freeze or say something silly. 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. "Besides," she says, concentrating on navigating her walker towards the nearby bank of elevators instead, "I have pretty thick skin."
We settle down on a couple of couches, Cara's 'chariot' faithfully positioned by her side. Born in Hyderabad, India, to an Indian father and English mother (but raised in Canada), Cara is a United Nations humanitarian 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 United 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 specialist 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 basically disintegrating from the inside out."
Giving her 10 to 15 years before she'd lose significant mobility, 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 interested in going to Angola, I said, 'Sure!' I didn't even know where Angola was! My family and I needed an atlas to find it," she laughs. It's an attitude that might, at times, beggar belief because, even after her awful prognosis, 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 heavenward at the very mention. "Goodness, no," she groans. "You cannot change a thing by complaining! To me, it was simply never acceptable to say that I couldn't continue doing this - because I knew I still had so 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 definitely 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 diagnosis, 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 beginning, 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 together, 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 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 disability, with the same dreams. It gives him hope 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 relative who'd once told her to abandon all hopes of a serious relationship. "This 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 US Army Ranger 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 infrastructure and our attitudes. I understand why a lot of people with disabilities 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 international charities and corporations striving for sustainable and impactful social responsibility.
The move to the US was a difficult one for her. "I worked hard to make as great an impact there as I would've in the field," she says. It's what led to her idea for the biggest and most ambitious challenge she's undertaken yet: a 12-day expedition across the Grand Canyon on horseback and white water rafts that will be filmed for a documentary called 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 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, catapulted 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 constantly dropping things, constantly struggling to access places. 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, pausing to adjust a stiff leg and joking about how nothing is graceful 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 something just because it's hard, you'll never get out of bed." 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 Grand Canyon expedition - set to take place in April next year - visit www.princessrising.com.)
karen@khaleejtimes.com

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