How Multiple Sclerosis Took Me from the CIA to the Yoga Mat

Eight years ago, I thought I was at the top of my game, working in the Office of the Secretary of State as the Senior Director for women affected by conflict. It was the culmination of a career spent trying to make the world a kinder, more democratic place. Measuring my life by outward achievements, I thought I had done well for myself. As a history major at Dartmouth College—which didn't begin admitting female students until 43 years ago—I was a graduate of the second class to include women. Then it was off to Oxford University for my Masters degree. Afterward, I worked my way up the ladder at the CIA and Defense Department—an advance that culminated in my becoming the Director of Central and Eastern Europe at the White House—and then on to become the Senior Director for Policy and Advocacy at one of the world’s largest international relief agencies. Along the way, I had received a number of awards, including being knighted by the President of Poland for facilitating Poland's entry into NATO. Between the different jobs and many trips to the far corners of the earth, I married and raised three children. When I wasn’t working, traveling, or being with my kids, my husband and I ran, biked, hiked, skied, golfed, played tennis, and swam. I considered myself a well-oiled machine that never got sick—and if I did, I ignored the symptoms for the sake of my ambitions and responsibilities. I remember thinking that for my next feat, I'd climb Mount Kilimanjaro.

Then something happened that stopped me in my tracks and changed the trajectory of my life. It was a cold day in February during a cross-country run with my 15-year-old son. Three miles into the race, I noticed my right foot hesitating over where to land on a riverbed. Later I fell trying to run downhill, because my legs became stiff as boards. My knees locked going up or downhill and my feet dragged in the dirt. After falling two more times, I stopped trying to run, crossing the finish line as other racers were getting into their cars to go home. When I got into my car, I knew something was seriously wrong, but didn’t know what. My husband thought it might be related to doing headstands in yoga class. I went to a chiropractor, who suggested I see a neurologist. The neurologist did a few tests, listened to my story, and told me I had multiple sclerosis.

When I was first diagnosed, my doctor told me, “The good news is that you won’t die from it. The bad news is that there is no cure.”

Multiple sclerosis (MS) is a disease of the central nervous system that interferes with the highway of messaging from the brain, down the spinal cord, to the tips of the fingers and toes. This disruption of nerve signals can cause a wide range of symptoms, including problems with walking, balancing, thinking, speaking, and coordination. In some people, the disease may be mild and sporadic. Others experience progressive symptoms. When I was first diagnosed, my doctor told me, “The good news is that you won’t die from it. The bad news is that there is no cure.”

Hearing the news startled and confused me. Until that moment, I had identified myself as a youthful, active, productive, independent, strong, confident, and altruistic model of American society. This image of me did not mix with a chronic disease like MS. When the doctor asked me to stand on one leg, march with my knees high, and close my eyes, I thought to myself, “How silly, of course I can do all of these tests. So, maybe I don’t have MS after all.” With that, I scheduled an appointment with another neurologist and went off to Sri Lanka on a job-related assignment.

Upon my return, the second doctor confirmed the initial diagnosis with a spinal tap. There is no single test that can determine whether a person has MS. The diagnosis is a clinical one, made on the basis of the symptoms reported, neurologic exams, and ruling out other explanations for the symptoms, such as Lyme disease.

My condition is progressive. What started out as an occasional trip over my feet has escalated to severe tingling throughout my body, increased loss of balance, and an inability to go up stairs or walk around the block. I can no longer march in place, balance on one leg, or feel a pinprick on the bottom of my feet. Studies indicate that 90% of the people with sporadic symptoms develop progressive ones within 25 years. Just as there is no known cure for MS, there is no way to either predict or prevent its course. Managing my symptoms and slowing the progression of the disease has become the major challenge of my life.

Initially, I thought I would keep going as I always had—which is to say, behave as though nothing could stop me and muscle my way through. I would find a good doctor and develop the best possible drug treatment plan. My already good diet would become better; I would cut out processed food and red meat, while eating more vegetables and fish. I would continue to exercise and do yoga at least one-half hour a day, and I would begin to meditate. My motto was to stay the course and not let the disease take anything from me without a fight. I did not let my co-workers know that I had MS, and after returning from Sri Lanka, I accepted work assignments in the Congo and Burma. The heat caused the tingling to worsen, along with my fatigue and walking difficulties, but I ignored or minimized my growing symptoms as I followed my deeply ingrained habit of trying to push through my limitations. In my last conversation with my father, who died at the age of 92, he asked what I would do about this terrible disease I had developed, almost as though he had to keep living to help me. I said I would just “keep going” and that it was okay for him to die, because he would always be in my heart. He laughed and said that I would always be in his heart, and that he would keep going, too. A week later, he died fully dressed in his bed.

Many years before, my father wrote a book about his eight children, called Eight Is Enough, which became a television series in the '70s. In the book, there is a chapter entitled “The Go-Girl.” That chapter is about me, the middle child of eight who loves sports and marries the football player. The title of the chapter comes from a time when my father and I ran on the beach together in California, where we used to live. I would urge him on with the words, “Go, Dad, go!” as he ran through the deep, dry sand, trying to keep pace with me. In the book, he describes me as a quiet girl with sloe-blue eyes, a slim, lithe body, and a beautiful smile. He wrote that he enjoyed watching me grow up—because he knew I would always be doing something worthwhile and putting enough effort into my experiences to both enjoy and learn from them. When he asked himself, “What is she doing?” he imagined me playing hard tennis, speaking Spanish, water-skiing, playing second base on an all-boys team, running the mile, reading history, or going off to Mexico. At the end of the chapter, my father poses the question, “What happens to girls like Susan, who greet life so fully and with such steadfast mien?” Observing that there are more Susans at 14 than at 50, he postulates that “something happens to them along the way—some accident, some husband, some bottle of gin that alters their spirit, poisons them with such meanness and cruelty as life can bestow. And sometimes, of course, they make it through because we all know a few Susans, but not many.”

Naturally, I wanted to be the Susan that “makes it through,” but how? Within two years of my diagnosis, it became clear that my initial strategy had failed. Alternating between dismissing the disease and fighting it, I had come up empty-handed. One day, I went to the doctor, tingling all over and unable to focus. Sometimes I choked when trying to swallow and I had developed a sharp pain on my chin and behind my eye. My doctor encouraged me to take a few months off of work. The break from work eased my symptoms and made me conscious of the impact stress was having on me. I loved my job, however, and didn’t want to quit. I also had children who were still dependent on me.

Naturally, I wanted to be the Susan that “makes it through,” but how?

The solution was to change jobs, arrange my schedule to travel less, and get more help. Work accommodations made it possible for me to stay in the workforce for two more years, until my third child graduated from college. One day, however, it struck me that if I wanted to live with this disease as best as possible, for as long as possible, I needed to dramatically change my life, and that included no longer working. The idea that the past will determine the future if you don’t change your trajectory had really begun to resonate with me. I wanted to do what I could to slow, if not stop, the disease's progression—and that meant stop working. It also meant reconnecting with myself.

My tough, highly-trained, analytical mind, that had proved so useful to me in the highly competitive, male-dominated workforce in which I had spent my entire career, was no longer serving me now. To tap into my own inner strength and begin to heal, I first needed to find me—by decoupling myself from my history and what I thought my parents wanted me to be. In the process, I came to appreciate and grow the more feminine, kinder, and subtler sides of myself. I can still probably hold my own in a room full of military generals from Eastern Europe or foreign policy experts at the White House, but the process of coming to terms with my disease caused me to soften, be less driven and less competitive. A small part of me is still the driven go-girl, but I have learned to like staying put, and no longer define myself in the context of a perpetual list of things I need to accomplish. Coming to terms with my disease has encouraged me to let go of the past, embrace the moment, and be less attached to the outcome of my efforts.

At a practical level, I cannot let my thoughts drift ahead of me or I will trip and fall. Similarly, the perpetual tingling feeling I have on my skin encourages me to find ways to calm my nervous system by being aware of where I place my body in space and what I put inside it—including the company I keep and the information I put inside my brain. As I lose the ability to run and move quickly, I find myself more aware and appreciative of sound, touch, taste, and sight than I used to be. I make every effort to seek out beauty and place myself in it, because of its soothing effect on my nerves. Luckily, I see and feel beauty everywhere because I spend more time outdoors and less time at a desk analyzing events. I have kept some of my friends. Others I have let go. And I am meeting new people all the time. Over the years, my relationship to MS also has changed. I now see it as a teacher and friend, not as the enemy I once thought I needed to fight. In a sense, this disease has given me the opportunity to recraft my life in a way that is really mine.

This is not to say that MS does not make me prone to fear, anxiety, and depression, because it does. There is no quicker way of moving in this direction than comparing what I could do to what I can do, or falling back into the mode of trying to save myself from what is essentially an increasingly debilitating disease. I am consciously choosing not to let my mind go there, as it distorts my potential and undermines my appreciation for all that is. What helps me most on this journey, aside from good medical care and diet, is yoga, meditation, and breath work.

Every morning, I wake with the birds, get a cup of tea, and sit down to reflect on three things in life that make me happy. I then do some yoga, breath work, and meditation to mindfully move into the day. After breakfast, I try to do a bit of cardio work, such as swimming, rowing, or biking. Then I write, read, draw, and rest. Before going to bed, I do more yoga and meditation.

What does yoga do for a person with MS? It improves physical function and quality of life. I am confident that I am stronger, more flexible, and less prone to falling than I would be without it. Yoga is helping me to heal from the inside out by encouraging me to look inside myself and soften in the places that are tight. After a yoga session, I feel self-empowered, and if I meditate every day, I am more focused and less prone to anxiety and desperation. My mind quiets, and so do I.

Initially, I could only meditate for a couple of minutes at a time. Learning how to meditate seemed harder than learning Arabic. But I have stuck with the practice, because the benefits are so great—in terms of how I feel during and afterward. It calms my nervous system and helps the tingling go away for a time. Meditation has moreover allowed me to see things about myself that were always there, but which I never before allowed myself to explore. I have begun to see and separate myself from patterns of habitual and self-destructive thinking that have colored my actions for as long as I can remember. And by linking yoga and meditation to breath work, I am energized and able to feel the connection between my body and my mind—a connection I stopped appreciating during previous years of constant work and travel. As a teacher once told me, “Yoga is not exercise. It is a way of life.”

The greatest casualty in my transformation was my marriage of thirty years. My former husband and I loved each other and raised three beautiful children. We probably would have stayed together, if it were not for my getting MS and needing to completely change my life. He wanted to keep going as we had because his career had taken off and it was, as he said, “his time.” I, on the other hand, needed a quieter, more positive, and less stressful life. I needed to change course completely. The greatest benefits to the change have been finding new love, inner health, and a closer relationship with my children. These are my new guides.