'The right wheelchair will take you anywhere a pair of legs can': My Patagonia trip
- After my ALS diagnosis, I prioritized my wanderlust and traveled to the edge of South America.
- For hiking and trekking, I would use the one-wheeled Joelette chair designed for all terrains.
- Relying on a wheelchair didn't stop me from reaching any site or spoil my adventure.
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Even as I lost the use of my limbs, lungs, and larynx, and relied on caregivers for my every need, I prioritized my wanderlust. And I traveled to the edge of South America to trek through the rough terrain of Chilean Patagonia.
A few weeks after I turned 29, a doctor confirmed that I was suffering from amyotrophic lateral sclerosis, or ALS, which would, over the course of two to five years, gradually paralyze all the muscles in my body, leaving my cognitive function intact, until I suffocated to death.
I immediately thought, "Get your fill for adventure while you can still walk." I was convinced that wheelchair travelers were limited to homogenized all-inclusive resorts and buffet fare.
But I've learned that the right wheelchair will take you anywhere a pair of legs can.
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In early 2019, I tweeted that I wanted to travel to Patagonia in a wheelchair, and someone responded that Team Gleason could help. The nonprofit, founded by former New Orleans Saints player Steve Gleason after his ALS diagnosis, provides adaptive technology equipment and sponsors adventure travel for other patients to help them live their lives to the fullest.
After filling out an official request form with Team Gleason, we planned my two-week adventure throughout Chile that would end at the most southern point before Antarctica, Chilean Patagonia.
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I needed three wheelchairs for the trip: A foldable power chair, a small manual one as a backup, and a special chair for trekking.
Team Gleason gifted me a Jazzy Passport, a lightweight and compact power chair that folds down to the size of a small suitcase. It has two batteries, a TSA-approved travel battery and a more powerful one. Now, these chairs are sold in a wide variety, but back then, portable power chairs were a fairly new product and having the freedom to control my wheelchair without lugging a 250-lbs machine and renting a specialty van for it felt like a mobility dream.
For hiking and trekking, I would use the one-wheeled Joelette chair designed for all terrains. It's only available to ship in certain European countries and remains only available in the U.S. through the tours at Wheel the World. Even though our tour was through Eco Chile, Wheel the World graciously agreed to let our tour guides use the chair.
In November, I arrived in Chile with my Jazzy Passport chair. Although I had minimal use of my hand and needed a travel pillow to prop up my wrist to reach the joystick, I was still able to control the chair. Thanks to the sensitive joystick, I cruised through the streets and sights of Santiago, Puerto Vara and Punta Arenas with little effort.
Chile is very accessible to all with disabilities. In every city, all the sidewalks had a pebbled pathway for the blind. The only beach we visited in Puñihuil had a wooden walkway on the sand so I was able to roll on the beach. In fact, Chile was the birthplace of Wheel the World.
In Torres del Paine National Park, it was finally time to use the Joelette chair. Usually, two people can maneuver the chair, one in the front and another in the back, but since the wind in Patagonia can reach up to 70 mph, two additional people, one on each side, ported the chair to ensure that wind didn't topple me over.
Since I was immobile and at a higher risk of frostbite, my tour guides stuffed me in a sleeping bag then secured me to the chair with rope. Warm and cozy, I trekked through a forest to arrive at Lake Pehoé and its ancient glaciers, climbed up mountains to view 7,000-year-old Aónikenk cave paintings, and hiked to a viewing point of Los Cuernos del Paine, the iconic spiked granite peaks of the park.
Relying on a wheelchair didn't stop me from reaching any site or spoil my adventure. In fact, the most memorable part was feeling like Cleopatra atop a palanquin riding through the Andes Mountains, carried by four men who addressed me as "Reina de la Patagonia."
Angelina Fanous is a writer and an ALS advocate. You can follow Angelina on Twitter is @notsovanilla.