In This Together

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  For the more than 50 million people worldwide affected by neurologic diseases—and for their loved ones—hope is on the way.

  One

  MY SON TAGG was working for the Los Angeles Dodgers when Mitt decided he was going to run for president. Tagg enjoyed working for the Dodgers, but he also wanted to come back East to be part of his father’s campaign. One afternoon he was talking to the legendary broadcaster Vin Scully and asked for a little advice. “I’m thinking about leaving,” Tagg said, then started outlining his plans.

  Scully listened for several minutes as Tagg laid out his future, then smiled and grabbed Tagg’s arm. “Son,” he said, “if you want to make God laugh, just tell him your plans.”

  I was sitting in a Sunday school class in our church one morning in the early 1990s. We were having a discussion about the various ways people deal with difficult situations. And I remember thinking that many people don’t have a huge growth experience until they’ve had to face a particular challenge. Wow, I thought, my life is pretty good. I’m married to a wonderful and successful man; we have five smart, active, healthy boys; and we’re living comfortably in Boston. At that time, both Mitt’s and my parents were alive and they, too, were wonderful people who continued to play important roles in our family life. In fact, as I sat there, I couldn’t think of any challenges in my life that had been really difficult to overcome. I took a very deep and satisfied breath. Believe me, I knew how incredibly lucky I was.

  The challenges we had faced weren’t any different from those of most American families. Raising five boys, we were on a first-name basis with the staff at the local emergency room. We went through all the bloody noses and the broken bones. When our son Ben was ten months old he became ill with what turned out to be a combination of the flu, an infection, and an allergy to penicillin. He was wasting away from something that in earlier times would have killed him. I sat with him for seven days without leaving the hospital as he was treated with IV fluids and eventually got well.

  With six men in our house, life often was organized chaos. There was always something unexpected that had to be done right away. It seemed that we were endlessly running from one game to another, from Scout meeting to church event. There was homework to be done and parent-teacher conferences to attend, and there were the everyday problems of five young males racing through childhood and into adolescence that had to be solved. It was a typical family life. We experienced all the cheers and all the tears—and honestly, not everybody always got along. Our two oldest boys, Tagg and Matt, are only nineteen months apart in age, just enough of a difference for them to fight over every single thing. I can still hear one of them complaining about the other one breathing in his space. There was nothing we could do to stop the conflicts. I think every parent at one time experiences that frustration. There were days when I just couldn’t take it anymore. I reached the breaking point one afternoon when Tagg was sixteen years old. He and Matt were screaming at each other about some nonsense, and I warned them that enough was enough; they just had to stop. I probably warned them in a pretty loud voice. By then, Tagg was much taller than I, and he turned and started yelling at me. I don’t know what got into me; I have never done anything like this before or since, but I just couldn’t take it anymore: I hauled off and punched him in the stomach, knocking the wind out of him. I don’t know who was more stunned, Tagg or me. Neither of us could believe it. Mitt and the other boys came running from all over the house. Tagg was just looking at me, and everybody else started laughing. My father was in town at that time, and had witnessed this outburst of anger. He looked at me and said, “Oh, Ann, what have these boys done to you?” So, as you can see, rather than being a perfect TV family like the Nelsons, we were just like every other family we knew. We had our ups and, as in this instance, a down.

  We also had our family lore. None of us will forget the night one of the boys, who was then four years old, was sleepwalking and somehow mistook our bedroom for the bathroom and our bed for the toilet. Mitt and I leaped out of our bed like it was on fire, while our son simply turned around and returned to his own, completely dry, bed.

  We always had a dog, and once we had birds. When Matt discovered six abandoned hatchlings in a nest in a niche in our roof, he decided to raise them. I ended up digging for worms in our backyard, and he fed them to the baby birds. He even taught them to fly, balancing them on his arm and jumping off our rock wall and forcing them to flap their wings. Whenever he played basketball in the driveway, the birds would appear and land on his head and arms. The UPS driver and the mailman got the same treatment. Eventually, though, those birds left our nest.

  We also had mice, lots and lots of mice. Our son Josh bought four male white mice for his high school project, although, as it turned out, only one of them was in fact male. For years I had been hoping for more females in our household, but this definitely was not what I had in mind. Within a few months we were raising about a hundred mice in what had been my rarely used sewing room. Inevitably they escaped, and we spent days searching for them in every corner of our house.

  While the boys were growing up, we were very comfortable financially, but not wealthy. That came later, when Mitt’s company, Bain Capital, became more successful than either of us could ever have imagined. We had gotten married when we both were still in college; we paid $62.50 a month in rent for our tiny apartment in Provo, Utah; we had two folding chairs; our dining room table was an ironing board that folded into the wall; and we were as happy as we could be. While both Mitt’s and my parents were successful and affluent, their attitude about life was that you work hard, you don’t expect anyone to give you anything, and you live on what you earn. In fact, soon after Mitt and I were married, a large box was delivered to our apartment. It had been sent by my father. When I opened it, I was surprised to see it was a microfiche reader. There was a note attached explaining that he was hoping I might be able to do some work for him in case we needed extra money. Some documents had been damaged in a fire and needed to be transcribed. His way of helping us was providing us an opportunity to work.

  Mitt was still in school when our first three children were born, so we certainly needed that money. We saved everywhere we could: We bought the boys’ clothes at the Carter’s outlet in Boston, I did all the cooking, and I cut everybody’s hair myself. Mitt is very mechanical, and he made all the repairs in the house, except for the wiring; he changed the oil in our car and even did our laundry and ironed his own shirts. Our children learned how to work by watching us. It was a joyful time.

  Some of our best times together were spent in the dark. As our boys were growing up, fairly regularly each one of them would tiptoe into our bedroom late at night, sit on the couch at the base of our bed, and begin talking about whatever was bothering him. Something about being in the dark, with his brothers asleep and the door closed, allowed each boy to open up to us about his most pers
onal thoughts. We’d talk about problems at school, dilemmas with friends, or hurt feelings. Sometimes, admittedly, I would fall asleep during these conversations, and even Mitt did once—and the strange, contented sound he made instantly became part of our family lore.

  While the nature of the problems changed over the years, the custom continued. Still today, when we’re together, we go into the family room, turn off all the lights, and talk.

  Even after Mitt began earning a good salary, our roles didn’t change at all. Our marriage has always been a partnership: His job was putting money in the bank; I was a full-time mother. Being Mom was my job: I cooked every meal, I was the taxi service for five active boys, I cleaned the house. Baseball season was especially tough on our dinner routine; we ate a lot of boy-friendly meals, a lot of spaghetti, tacos, and chicken fajitas. Food has always been the glue in our family; after all, our meals were one of the rare times when we could all be together.

  While I felt completely fulfilled personally, I also knew that there were some who judged women who had chosen my path. Mitt was at Harvard Business School, surrounded by type-A personalities chasing success, while I was a stay-at-home mother during the day and attending Harvard extension at night. Mitt and I got married young, but I promised my father I would graduate from college. I knew that those who judged my choices had different priorities from mine; that their happiness came from following a different path. Most important, I knew Mitt completely understood I was working just as hard as he was, but in a different way, and that he valued my contribution to our family. It wasn’t just lip service. In every way, he truly considered me as an equal partner.

  I so wanted to speak out for other stay-at-home moms, but I just didn’t know how to do that. I got that opportunity in the mid-1970s, when the Harvard Business School invited Mitt and me to join several other people speaking about our career choices. Career choices? I had never actually seen it that way. I understood why Mitt had been invited. He was on the path to great success. He was a relatively young vice president of a respected management consulting firm. Only a few years earlier he had sat in that same auditorium as a student and could offer some valuable real-world advice. But me? I had spent those same years changing diapers, burping babies, and making sure our kids got to school on time.

  At the time we were asked to speak, we were living near Cambridge, where the feminist movement was in full bloom and motherhood was going out of fashion. There were many people in academia who believed the role of stay-at-home mother, my job, was no longer a viable option for young women. While I had agreed to speak, I didn’t have the slightest idea what I was going to say. I would be speaking to students at one of the best business schools in the world, and I knew for certain they weren’t spending so many thousands of dollars on tuition so that, one day, they could drive a station wagon and watch Sesame Street. Years later, Mitt would describe me as “chief family officer.” That was clever, but it certainly wasn’t a title that these people were pursuing.

  As the day of my speech got closer, rather than being anxious, I became more resolute. Rather than preparing my speech, I decided to be bold; I was going to speak from my heart and talk about the profession I had chosen. Somehow I had to justify the fact that while so many of my contemporaries were shattering the glass ceiling, I was home scraping Marshmallow Fluff off our boys. As I sat on that stage next to Mitt, watching students stroll into the auditorium, I honestly expected to be booed.

  I was the last person scheduled to speak. As the five people who spoke before me explained how and why they had chosen their high-paying occupations, I didn’t move. When Mitt finished, the audience applauded politely. Then it was my turn.

  “I could have done a lot of different things,” I began. “But I didn’t. Instead I became a wife and a mother.” I turned and pointed at Mitt. “And, by the way, my job’s more important than his, because what I’m doing lasts a lot longer than what he’s doing.” I channeled all my energy into that speech. I hadn’t realized just how long I’d been waiting to say these things, and they flowed out of me.

  Being a wife and a mother is a complex and physically challenging job, I said. Not only that, it’s a lot more difficult than an office job, because it consumes twenty-four hours of every day with no time off. Once I got rolling I didn’t hold back. Every child is unique, I continued. Every child is his or her own person, with needs and wants, and no handbook could possibly provide all the information and advice I needed to be a doctor and a nurse, a psychologist, a teacher and a speech therapist, a consultant, a coach, a caregiver, sometimes a boss, and always a friend. I spoke for about ten minutes, which might have been the longest I had ever spoken to an audience.

  Finally I concluded: “Mitt and I both know how important his job is. He’s the provider, and it’s challenging and he’s good at it, but we both know that our most important job is raising our kids, and that a lot of that responsibility is mine. And I am fortunate to have a partner that values me as much as Mitt does.”

  My goal hadn’t been to change anybody’s mind about their own future; I just wanted a little more respect for women who had made the same choice I had. And whether the audience at Harvard liked it not, I had finally gotten to say it.

  As I gathered up my note cards, the applause began—and it grew into a standing ovation. I wasn’t used to anything like that, and I probably turned a little bit red. Yet I couldn’t spend too much time basking in the recognition—I had to pick up one of our boys to take him to a basketball game and then go home to get dinner ready.

  So as I sat in that Sunday school classroom, I knew very well how fortunate we had been to be mostly untouched by the sadness of life. And I was greatly appreciative. But I also understood that there was a natural order to life, and that the only constant was change. Over the next few years, things did change: Our boys grew up, and by the late 1990s only the youngest, Craig, was still living at home. Tagg married, and we became grandparents. Mitt ran for the Senate against Ted Kennedy and lost. Unexpectedly, and certainly without planning, I got pregnant, but in my fourth month, I miscarried. Within much too short a period my parents and Mitt’s parents passed away. Mitt and I accepted each of these things, the joys as well as the incredible sadness, as part of the passage of normal life. More important than anything, we had each other and we had our rapidly expanding family. We were settling comfortably into the next part of our lives, ready, we believed, for whatever was to come.

  Then I began feeling a strange sensation in my leg.

  The symptoms of my disease didn’t appear suddenly and overwhelm me. I wasn’t attacked. There was no horrendous pain. The initial signs were subtle and easily dismissed. From time to time I’d lose my balance or trip going up a staircase I’d climbed thousands of times. The middle part of my right leg was numb, and that feeling seemed to be expanding upward, into my torso. But the worst symptom, for me, was fatigue, complete and continuous exhaustion. I had always been an incredibly active person: I was a jogger and had run several 5K races; I skied and played tennis regularly; whatever needed to be done I did. It seemed that I never slowed down and I never got tired. But suddenly I could barely get out of bed in the morning. One night Mitt and I were supposed to be at a dinner in Boston and I remember thinking, I don’t even know how I can get dressed. The thought of getting in the car and driving into the city to meet Mitt was just overwhelming. I was serving on several boards and committees during this period, and I started skipping meetings.

  One afternoon I went grocery shopping with my best friend, Laraine Wright. Our children had grown up together. Our front doors were always opened to each other—which essentially describes our relationship. She was the one person with whom I was so comfortable that there was no need to pretend that everything was fine. Laraine was a nurse, and when anyone got sick or had a problem she always was the first person we called. When it came to health issues, she would know what to do.

  That day, while we were out shopping, we walked into the
market and I leaned on the cart. I couldn’t move. I couldn’t even make it down one aisle. It was more than I could deal with. We picked up a few things and left. But if Laraine thought there was a serious issue she didn’t say anything.

  Still, something was very wrong. Whatever it was, I told myself, it was going to go away. A year earlier I had experienced somewhat similar sensations, and they had subsided. I looked for obvious reasons: I was exhausted because I was trying to do too much. The numbness was probably a pinched nerve. I’d recently had a really bad case of the flu that had just knocked me out. Maybe that was it; maybe I hadn’t fully recovered. Everybody loses their balance from time to time. I probably just need a little more sleep—but I got more sleep, and it made no difference at all. I was mystified, I was frightened. I didn’t tell anybody, I didn’t complain. I felt it had to be something serious, but that was impossible: that type of thing didn’t happen to me. It didn’t happen to our family. Maybe it was one of those strange flu-type diseases, I told myself, those weird conditions that just seem to hang on forever and then gradually disappear.

  I would have gone to a doctor if I had had the slightest idea what type of doctor to see. But I didn’t know what I had. It didn’t seem productive to tell a doctor, “I just don’t feel right. Something’s wrong with me.” I didn’t even know what questions to ask.

  The symptoms came and went like a fog: they were there and they would fade. A few years earlier my mother had died of ovarian cancer, and all I could do was watch helplessly. To honor her memory, I joined Massachusetts General’s Women’s Cancer Advisory Board. One day in 1997, I was walking through the hospital lobby on my way to a meeting when I noticed a pile of pamphlets with the word diabetes in bright letters on the cover sitting on a table. I stopped and picked one up. I remember my first thought: Maybe that’s what’s wrong with me! For those few seconds I actually hoped that I had diabetes. That would put a name on my symptoms and allow me to begin treatment. After a few seconds I put the pamphlet back down. No, I didn’t have diabetes.