When the Road Turns: Inspirational Stories About People with MS

When the Road Turns: Inspirational Stories About People with MS

by Margot Russell, Margot Russell
"A book that reminds us to hold tight to our dreams, When The Road Turns is an inspiring collection of stories written by people living with multiple sclerosis. When you walk through the front door of these writer's lives, you won't leave without a renewed sense of hope and a new definition of courage."

—Montel Williams


"A book that reminds us to hold tight to our dreams, When The Road Turns is an inspiring collection of stories written by people living with multiple sclerosis. When you walk through the front door of these writer's lives, you won't leave without a renewed sense of hope and a new definition of courage."

—Montel Williams

Each week in the United States 200 people are diagnosed with multiple sclerosis, adding exponentially to the 350,000 people nationwide and the 2.5 million people worldwide with MS. This book is the first of its kind to share the real-life struggles and triumphs of those facing MS in one inspiring collection.

In their own compelling words, seventeen people with MS take readers on a journey sharing their dreams, their emotional and physical battles, their struggle to accept the illness and their courage to create new lives. People like Israeli artist Inbal Tsur, who discovers a new way to paint after losing the use of her arms; renowned oceanographer Richard Radtke, who becomes the first disabled man to reach the South Pole; a pilot who battles the FAA to keep her pilot’s license; and a woman who is now enjoying life as a mother to a new baby despite doctors’ advice not to further risk her health by becoming pregnant.

When the Road Turns will be an encouragement for anyone with MS or other chronic illness, as well as those who want to better understand the disease, which may be affecting someone they love.

Editorial Reviews

Multiple Sclerosis (MS) is a terrifying disease that is the greatest crippler of adults between the ages of 20-40. This book contains 17 inspirational essays by ordinary people who are dealing with this disease. Their stories deal with searching for cures; trying to raise three children as a single parent; handling day-to-day challenges; and pursuing their dreams of a career—even if it was not the one they originally dreamed of. A useful appendix includes educational programs; resources for caregivers; travel; Web sites; and, general reading. These essays would be uplifting for anyone afflicted by the disease, or for a family member or friend of someone with MS. KLIATT Codes: SA—Recommended for senior high school students, advanced students, and adults. 2001, HCI, 280p. bibliog., $12.95. Ages 16 to adult. Reviewer: Barbara Jo McKee; Libn/Media Dir., Streetsboro H.S., Stow, OH , November 2001 (Vol. 35, No. 6)

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Health Communications, Incorporated
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Read an Excerpt


By now you may have heard my story. The first of my MS symptoms appeared when I was in the Naval Academy, I've had recurring bouts every two years, and was misdiagnosed for about 20 years since then. But the details of my diagnosis are not important. What I've done with it is.

When I heard the three words "You have MS", like the authors of these stories, I denied, grieved, raged, self-pitied and despaired. I wondered if the fire in my feet would ever go away. I worried that my career and livelihood would be taken from me. I thought about leaving this planet, but couldn't do that to the people who loved me. I sat around for 60 days going "woe is me", but at the end of 60 days where did that get me? Then a friend said to me said, "I don't understand you. You've met every other challenge life has thrown your way. You've moved every other mountain. Why is this one any different?"

The words "You have MS" changed my life, but my friend's words saved my life. Because that's when I realized that I've never let anyone or anything define me, define my limits, or take away my hope. And I wasn't about to let MS.

That's what I like about these stories. MS doesn't define these authors, they define MS. They are not waiting around for MS to beat them, they are working, living, playing and beating MS. Each of them has discovered that switch in their minds that turned them from MS sufferers to MS survivors. The day I found that switch was the day I realized, I have MS, it doesn't have me.

One of my favorite adages is "What have I done today that's worth talking about tomorrow?" What each of these authors has accomplished is worth talking about. They remind me of a favorite quote from Anne Frank: "Whoever is happy will make others happy too. He who has courage and faith will never perish in misery."

-Montel Williams-

Chapter 12

Remembering Dreams

I paused for a moment to catch my breath and readjust my gear. We had already climbed several hundred feet up the mountain, and I was slowly becoming ill from the altitude. I had fallen behind my group by stopping to rest, fighting off the dizziness and physical fatigue.

Below me the gentle Urubamba River curved gracefully along the valley in the Andes Mountains of Peru. It had been just three hours since jumping off the rustic train from Cuzco with the others, literally in the middle of nowhere, to begin our hike along the ancient Inca Trail to Machu Picchu. Now I was several thousand feet up the mountain and had miles to go before we stopped for the night. I was battling fatigue, altitude sickness and my own uncertainty that I would make it to the top.

For almost half my life I had wanted to travel to Machu Picchu. I think I stumbled upon a picture of it in my younger years, and it became an icon of what the endless world had to offer. It seemed a place of mystery and hidden adventure, a place that ordinary travel could not take you.

The world is such a magnificent place; its pockets full of exotic coins and drawers of foreign fabric. I imagine that we'd all like to collect a trinket or two from the corner of everywhere and dangle them like charms from a bracelet.

We dream of the places we will go; we dream of the things we can do. We are dancing on a slow boat down the Nile. We are taking tea with the Queen, having remembered our gloves. We bring those dreams out like an old party dress from time to time and try them on for size. We wonder if they still fit.

Years before I finally got there, my Machu Picchu dream resurfaced with a surprising reverie. My father was traveling around the world and I imagined I could meet him if he stopped there.

It was an idea whose time had not come. I was the mother of three little girls and my husband and I were laying bricks. We had only the station wagon, not the white picket fence or a family dog. Dreams of travel were in the file marked "extravagant."

I had been taught that travel was something you earned. It's a retirement gift you give to yourself, or something you do in the Navy. For us ordinary folk, far away from the fur-clad women on the deck of the Titanic, travel was extraordinary.

But when my father returned from his adventure two years later-freshly tanned, knapsack full of maps and trinkets-I began to see travel as an ordinary membrane that I could pass through. He had often lived in a tent and eaten by the campfire with other adventurers who were hoping to see a different sky. He had forsaken fancy hotels and expensive restaurants in lieu of the road less traveled. My vagabond thoughts were changed forever; anyone could be a Christopher Columbus.

My life had begun to change, too, and there was now open space to consider. My future stood before me like a vast, endless plain. I was divorced and struggling to provide a life for my children. I was a madwoman, running to my job as a radio news reporter, and then running to daycare afterward. I would gather my children by the scruffs of their necks and plunk them down in the kitchen, where yesterday's dishes and last month's bills crowded our thoughts and the countertops.

It wasn't until I was diagnosed with multiple sclerosis that I began to take deep breaths and tear down the landscape that I had created unknowingly.

And everything would change.

My guide, Lios, a short Peruvian about twenty-four years old, stayed behind with me as our group of more experienced hikers raced ahead. I was taking such quick deep breaths that my abdominal muscles ached; it became obvious that I was struggling with the climb. I had never been so thirsty in my life, and I drank from my canteen as if it contained the last few drops of water in Peru.

Lios seemed troubled by my lack of physical stamina, and I wondered if I should explain. I had obviously overestimated my strength. We paused at a thatched hut for a rest, as the golden sun rose high above the mountaintops. I have traveled a long way in my life to be here, I decided. There was no other choice but to forge ahead.

An hour and a half later, the world took on a brighter hue. I began to adjust to the altitude: My breathing slowed, the dizziness disappeared and I knew that I would make it the rest of the way.

I left my job as a reporter shortly after my diagnosis and spent the next year or so staring out of the picture window in the kitchen. There was nowhere to go. I couldn't appreciate the silence in my life because it felt like emptiness.

It was the only time that I can remember in my life when I wasn't striving for control. Instead of packing the picnic lunch, I was merely the cloud above, restless and wandering in the wind. I stopped visiting friends. I turned down invitations. My existence hinged solely on my illness.

I spent my days fighting with insurance companies and poring over medical journals. Vitamin bottles reproduced in my cupboards. I tried yoga and meditation, but my heart wasn't there. In between gulps of brown rice and barley, I watched soap operas and game shows and decided not to ponder my existence anymore.

I view that period of my life now as a great slowing of the engines. Racing down the track full steam, the view of the lilacs and distant smokestacks were obscured by headlong flight; the point of convergence was always up ahead. It was a time of silent, indulgent sobriety, but it served to refocus my view. I was back to kitchen work: reorganizing the pots and pans, scrubbing the floors and the walls of a tired soul. I had to begin again, a most long and painstaking task.

As I made my way, planting small seeds in an empty garden, I found delight in simple things-shuffling through a forest of tall pines, painting the wall in the living room the most lively color of pumpkin. I revisited old dreams for a time and decided I would travel. I wanted to trek to a place of ancient origin, where clarity was bequeathed from the mountaintops, and where the motion of my feet would bring me to a better view.

We arrived at sunset at a large complex high up in the mountains that housed hundreds of hikers on their way to the mysterious land of Machu Picchu. The rest of my group went to explore the area where our tents were set up, but I dropped onto a stone terrace, barely able to move. I had never been so tired or dirty in my life. I sat alone for hours, listening to the voices of strangers. I missed my family and wondered why I had dragged myself to the top of the world like this.

Thoughts of the day drifted through my mind. I recalled the 200-foot waterfall we had passed in the morning and the brook in the rain forest where we had stopped to eat our lunch. We had hiked past ancient ruins and temples left unscathed by time. I was, I thought, privileged to experience such grandeur.

At dinner, made by our porters late in the evening, I declined all but the soup. I was physically and mentally exhausted, but somehow I reveled in my new persona: explorer, wanderer, dirty mother high up in the mountains donning dusty hiking boots. It occurred to me that just a year before I had lain in a hospital bed in Boston for treatment of a nasty MS episode. Today, I felt like Indiana Jones.

After a cup of tea made of coca leaves and boiling water, we climbed a mile farther up the mountain to our tents. I was the only single person in my group, so I had a tent to myself, pitched right next door to a small shack inhabited by a Quechua Indian woman. The Quechua, descendants of the Incas, still live a very primitive life farming in the mountains of the Andes.

Built sometime around 1400 A.D., Machu Picchu was presumably a spiritual center for the Incas, who inhabited a large section of South America a thousand years after the death of Christ. The Incas were master builders and masons, incredible engineers and stout environmentalists. They sought to harmonize the work of humans with the work of nature. They worshipped the water, the land, and the sun as they did their gods, and they built temples of thanks in places of incredible beauty. Machu Picchu had been built high up in the mountains, at over 8,000 feet-a difficult place to reach. The Spanish never discovered it, even after they had conquered the Incas.

We had planned to awaken for breakfast at 3:00 in the morning and then begin the final leg to Machu Picchu. I lay there, alone in my tent, taking stock of my physical condition. The familiar numbness and tingling in my arms, a common symptom of MS, had started hours earlier. My legs ached and I was short of breath, yet I felt so alive. I had an unknown source of energy and strength surging through my veins and welling up into my heart like a fountain.

I tried to sleep, but a rooster, two donkeys and the glorious spirit of the unknown kept me up most of the night. Lios rattled my tent at 3:00 A.M. with a cup of coca tea. We would wind our way up to Machu Picchu now . . . in the dark. I felt strangely energized and ready for the day.

When you've been a mother for a number of years, it's hard to slip away to Peru unnoticed. Your children wonder who will pick up the balled socks under their beds; they worry that next you'll be off to the Congo. Not having set a precedent for hiking alone in the mountains, I had a few questions to answer- but most everyone supported my dream.

At the very heart of humanity, I think, lies a divine pool of possibility. All that we create is simply borrowed from there. We recognize the dreams of others as our own. And so I went away, metaphorically taking the trip down the Amazon for my mother or the ride on Space Mountain for my children. My knapsack was full of the little dreams of others.

My adventure to Peru would become the standard of my dreams. Having left as a blank slate, I gathered the wide, toothless smiles of the natives, collected long, endless days from the Sacred Valley and saved the droplets of my toil along the ancient trail. I gathered these things, as if they were a harvest, and lived my life abundantly.

I tiptoed along the darkened path like an Indian, listening for the sounds of the wild, carefully planting one foot in front of the other. I urged Lios to go ahead with the group, as I had found my own pace and was reveling in a quiet space and the solitude of thought.

Traveling alone is a solitary flight, where one experiences her own definition of courage. Alone, the trip is not colored by a companion's needs or wishes. You carry your own baggage. You sing your own song. You are free to define the world with your very own words.

And so, on this morning, making my way to this ancient Inca temple in the sky, I began the long task of redefining myself: not as a courageous MS victim, battling the demons with swords and hiking boots, but rather as a capable woman, who could look up the mountain and walk to the top.

Below me, somewhere in another place, my life awaited. My children waited for my return-with safe and caring people in our house by the sea. My disease waited in dark empty rooms for slivers of light to unmask it. And still the questions that had haunted me whispered softly in my sleep: Will I always walk? Will I hold my daughter's hand as she walks down the aisle? Will anybody want me now?

The sun began to rise slowly, illuminating the once dark shadows of majestic mountaintops, mist rising from the peaks like white puffs of heaven floating home. Ahead of me . . . a set of Inca steps shooting straight up to the sky-the last and hardest stretch. If I can climb just two at a time-if I can take the next step. . . .

Beyond the steep staircase stood a temple bestowing a glorious view of Machu Picchu nestled in a mountain far below. Other hikers stood silently about: speechless, breathless at the sight. Tall, majestic mountains encircled the ruins, the thin air making it appear that you could touch a peak, wrap it up and take it home.

Seeing that no one had begun to walk the final leg of the trail, I sped ahead to enjoy it alone. I delighted in the solitude, for even the silence seemed to reverberate from the mountaintops, the absence of sound a sound in itself. Light radiated from a clear blue sky, bouncing off the leaves and making patterns on the grass. And always below me I could see the ancient peaks of Machu Picchu, jutting boldly toward the sky. They seemed to know that I was coming and welcomed me there.

I arrived with staggering steps and climbed upon an old stone farming terrace that offered a plot of grass and a magnificent view of the world below. Warm tears found their way from my eyes as I whispered, "I am here, I am here!"

And I, at that moment, the sum of all the things I had ever been, found a world inside of me of all the things I might become.

No longer was I just a human being with imperfections and struggles, or a single woman with MS. I was also a strong wind of potential and beauty, blowing quietly away . . . from the Land of Couldn't Be.

Margot Russell

(c)2001. All rights reserved. Reprinted from When The Road Turns by Margot Russell. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, without the written permission of the publisher. Publisher: Health Communications, Inc., 3201 SW 15th Street, Deerfield Beach, FL 33442

Meet the Author

Margot Russell has worked as a news broadcaster, a reporter and a television producer, and was diagnosed with MS in 1998. She is a speaker and Executive Director of the Sea of Dreams Foundation, which creates programs to better the lives of the disabled.

Visit Margot Russell's website at www.roadturns.com.

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