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Why I'm Crossing the Grand Canyon as a Woman With a Rare, Progressive Disability

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Breaking down boundaries and facing adversity has been my life’s greatest struggle and greatest triumph.

My name is Cara E. Yar Khan. I was born in Hyderabad, India, raised in Canada and now live in the USA. At the age of 30, in the midst of an international career with the United Nations Children’s Fund (UNICEF), I was diagnosed with a rare type of muscular dystrophy, a progressive muscle wasting disease called hereditary inclusion body myopathy (HIBM). For the past 10 years I have used my network and that of my family to develop my own advocacy platform called Princess Rising.

The name Princess Rising was inspired by one of the most influential people in my life: my paternal grandmother, who was a Princess of Hyderabad (picture attached from LIFE Magazine 1948). I am who I am today in large part because of who my grandmother taught me to be. My grandmother Nafeesa Baig was the most elegant, poised and eloquent woman, who always taught me to be graceful and independent and to work hard in my studies. At the age of 20 she married the brother of the Nizam (King) of Hyderabad, a union that lasted 10 years. The least pretentious of people, she rarely referred to herself as a former Princess. To her, it was a title, not a characteristic.

My grandmother was well-educated and trained in classical piano, guitar and the sitar. In the 1940s, during the days of British colonial India, she gave a speech on freeing women from the control of men, an especially bold and brave move for a woman of her time and position in society. The love and admiration people have for my grandmother speaks to her greatness as someone who inspired others with her willingness to adapt and deal with what life had to offer. An amazingly strong, bold, kind and graceful woman, she embodied and worked towards the values she believed in. These were the life lessons she bestowed upon me. Hence “Princess Rising.”

My diagnosis predicted I would lose my mobility within 10-15 years of the disease’s onset, which has prompted me to pursue a series of physical challenges while still active and mobile. My post-diagnosis activities have included extensive travel with UNICEF to devastated countries like Haiti and Angola, mountain climbing, kayaking and skiing. In April 2017, I will attempt a 14-day Grand Canyon mission that will include extreme tests of strength, endurance and danger. The Princess Rising Grand Canyon Expedition represents the biggest and most ambitious challenge I’ve faced yet.

Poised at the North Rim of the Grand Canyon, along with an award winning entourage of film producers, wranglers and white water rafters, I will begin a 14-day expedition striding on horseback from Jacob’s Creek, riding 45 miles through snow to descend nearly 6000 feet of vertical loose terrain into the country’s deepest canyons. Six days days later when we enter the heart of the Inner Gorge, we will encounter the Colorado River, America’s lifeblood of the West. Here where the water meets the rocks, we will dismount from our saddles and set off by boat for 8 days navigating over 150 miles of the United States’ biggest whitewater rapids.

Throughout this journey, in a harsh and unforgiving wilderness, the expedition will challenge and highlight the integrity of the human spirit, contrasted and framed by the majesty and grandeur of this natural wonder.

The Grand Canyon expedition will be filmed to create a documentary called “HIBM: Her Inescapable Brave Mission,” a story that encapsulates the fear, excitement, ambition, determination, courage, and relentless psychological and physical struggles that come with living with a debilitating progressive disease, and breaking down endless barriers faced by people with disabilities. I will candidly share my most raw and intimate thoughts and feelings about my unexpected life. As the film’s protagonist, I will shine the spotlight on the serious issues facing children and women with disabilities worldwide, and what needs to be done to help society include them as equal citizens with the same rights.

We can all do our part to show the world that we, people with disabilities, have much more to offer than the limitations society puts on us.

Learn more at Her Inescapable Brave Mission.

Originally published: October 7, 2016
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