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LEMTRADA is a prescription medicine used to treat adults with relapsing forms of multiple sclerosis (MS). Because of its risks, LEMTRADA is generally used in people who have tried 2 or more MS medicines that have not worked well enough. It is not known if LEMTRADA is safe and effective for use in children under 17 years of age.

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RMS and Travel: Embracing Life’s Journeys LEMTRADA patient blogger: Katy By Katy, Wife, Writer, and Yoga Instructor • December 21, 2017

LEMTRADA Patient, Katy, and her sister

“Katy, travel is the best educator.”

My mom recited that mantra throughout my life and clung close to her conviction—even after her relapsing multiple sclerosis began to take a greater toll on her body.

For years, she and Dad toted my siblings and me across the country to see and experience people and situations that were not part of our everyday lives.

The trips were not always exotic and distant. Sometimes getting away meant driving just an hour outside of town or simply exploring a treasure nestled in the backyard of wherever we happened to live at the time. (Dad is former Air Force, so we moved around quite a bit for a number of years.)

When we lived in Mississippi, my family would comb unexplored beaches a state away. After we relocated to upstate New York, we shifted our focus to vineyards, Niagara Falls, and an extraordinary island shaped like a heart.

During those years, I never understood that my mom was constantly fighting an invisible battle with her body.

She hiked and swam and filled every forest, poolside, and shoreline with her sparkling laughter. For decades, she put on an ever-present brave and joyful face, making sure everyone was having as much fun as she had always envisioned.

I remember one afternoon, soon after my RMS presented itself in the form of double vision, Mom took me out to lunch to meet one of her friends and her friend’s daughter, who had been diagnosed with RMS a few years prior. Megan was her name, and she, too, had experienced the sixth nerve palsy famous for making someone see two of everything.

Megan was telling me about the honeymoon she and her husband had taken—a picture-perfect adventure that was blurred by her double vision. But Megan had only wonderful things to say about the trip.

I remember thinking how impressed I was that she had still managed to find joy when disease did its best to eclipse one of the most precious times of her life.

Megan spoke candidly about the shock and fear she experienced when she was diagnosed. But, like my mother, she was never going to let RMS come between her and a fabulous trip. She reminisced about the glorious beaches and waterfalls and sunsets she witnessed while on her post-wedding Caribbean vacation, refusing to focus on what had gone wrong. Instead she chose to celebrate the wonderful memories she created when she decided to embrace beauty instead of heartbreak. 

More than 16 years have gone by since that lunch with Megan, and during that time I have been blessed with several opportunities to travel the world and get lost in different cultures. Each voyage has been unique and blissful in its promise to reveal new truths about the unknown.

I’ve done my best to not let my relapsing MS be an obstacle threatening to destroy the “perfect” getaway. Instead, I have given myself permission to push boundaries and make choices that may not seem wise in retrospect. 

I’ve spent too long in the sun and heat on the beaches of Indonesia. I’ve explored French and Italian side streets on my own after dark. I’ve thrown tomatoes relentlessly on the sidewalks of Spain, and crossed myself quickly before rushing through traffic in Greece and Vietnam.

But on the other hand, I’ve heeded my husband’s advice when he reminded me to walk slowly as we climbed up the hill to a castle in the Czech Republic. I trusted his judgment and paced myself to conserve energy, so we could both enjoy chamber music later in the evening and a stroll across the Charles Bridge after dinner.

I’ve listened to my sister as she encouraged me to take breaks while shopping in the Singapore humidity. And I’ve let my dad offer his arm for support as we navigated a set of stairs down to the river on a recent family trip to Chicago.

In each instance, thoughts of my mother’s voice, confidence, and insatiable wanderlust have inspired and encouraged me. 

In the wake of her death three years ago, I have done my best to honor her memory by taking advantage of every chance to go and see more, to do more, to be consistently curious and never afraid.

Nowadays my RMS asks me to be a little more mindful of boundaries. But I don’t view those parameters as limitations. Instead, I am constantly cultivating the wisdom that guides me to find air conditioning when I start to feel dizzy or a park bench if my left foot begins to drop and drag.

I work tirelessly to welcome the mystery of the unexplored—to honor my mother’s memory by boarding as many planes as possible and surrendering to the voyages that are still on the road ahead. I’ve also found inspiration through Megan’s journey. RMS isn’t the end of the story. It’s simply a chance to be a little creative with the detours.

And there are so many workarounds to utilize when RMS challenges us. Share your most creative one in the comment section below!

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