In This Together Page 2

  Later that afternoon, I sat alone in my kitchen trying to figure out what to do. I reached for an almost empty glass of milk sitting on the counter—and I could barely pick it up. My brother Jim is an eye surgeon in San Diego. Although we didn’t see each other as often as we liked, we spoke regularly on the phone. Along with Laraine, he was my go-to guy for any medical question. “Something’s wrong with me, Jim,” I explained. “I don’t know what it is, but I’m getting a little scared.” He listened silently as I told him my symptoms: a loss of balance, weakness, numbness on the inside of my right leg, absolute exhaustion. When I finished, he asked what I thought were random questions about, surprisingly, my eyesight. “Do you have blurred vision?”

  “No.”

  “Pain when you move your eyes?”

  “No.”

  “Do you see colors as vividly as always?”

  “Yes.”

  “Do you have a blind spot?”

  “No.” These questions seemed silly to me. It wasn’t my vision that was bothering me. What I didn’t know at that time, and what Jim purposely didn’t tell me, was that he was concerned I had something serious and was trying to eliminate some of the early possible indicators. Finally he said softly, “Ann, you really ought to see a neurologist.”

  I took a deep, slow breath. Once, Jim had been the boy who pulled my hair and told everyone on the school bus I smelled like a barn, but he had become a wonderful, compassionate doctor. The long pause, the soft suggestion, told me he was seriously concerned about me. I didn’t understand why I would see a neurologist, but I followed his advice and made an appointment with one of the most respected neurologists in Boston.

  Before meeting with this doctor I had an MRI and sent the results to his office. Lying perfectly still in that long tube, listening to the metallic thunk as that machine looked inside my body, I got the first hint that I was about to enter an entirely new world.

  Mitt went with me to the doctor’s office. Normally I was the one who calmed him down. Within the family, I was known as the Mitt Stabilizer, because I could rein him in when he got too excited or anxious. But as we sat in the waiting room and he held on to my hand, I realized our positions had reversed. Something else had reversed. Six years earlier I’d come regularly to this same hospital to assist my mother with her chemotherapy and radiation treatments. I’d been the caregiver, the helper. But now I’d crossed that terrible invisible line. This time I was the patient.

  I noticed several brochures lying on a table. They were fact sheets about terrible diseases: Lou Gehrig’s disease (ALS), brain tumors, Parkinson’s, and multiple sclerosis. (There were no fact sheets on pinched nerves or being overtired from too much work.) Both Mitt and I picked some up and began reading. As I read the listed symptoms I realized that some of them were describing me. Mitt’s grip on my hand tightened. He knew.

  Our reaction was no different from that of the many millions of people who have been in the same situation: This isn’t real. This type of thing doesn’t happen to us. I remember reading those brochures and wondering whether I had ALS or MS. I kept reading, searching for any symptom I didn’t have, looking for some loophole, but there was none.

  Eventually we were called into the doctor’s office. We knew the doctor socially; his son had attended the same school as our boys. But that day, he was all business. He put me through a series of neurologic tests: While I was seated, he pulled my toe in different directions. Without looking, I was supposed to tell him in which direction he was pulling. I couldn’t. He rubbed a key against my leg. I couldn’t feel it. He asked me to stand with my feet together and turn around. As I did, I lost my balance and started to fall. I failed every test. The doctor said very little, but it was obvious that each succeeding test was confirming his diagnosis. What is it? I wanted to shout. Tell me! This is my life! Tell me what’s wrong with me! Instead, he continued observing my reactions and methodically taking notes. The silence in the examining room was overwhelming.

  When he finished, he excused himself, telling us he would be right back. I suspect he was giving us time to absorb what had just happened. As soon as he left the room, I broke down. Mitt cried, too. This was the worst day of his life, he would tell me later, and he began to understand that our life together would never be the same. Eventually he turned and looked at me. “Listen to me, Ann,” he said. “As long as this isn’t terminal we can deal with it. Whatever it is, we’re going to deal with it together.”

  The doctor returned. Like the cliché jury who returns to the courtroom refusing to look the defendant in the eye because they’ve found him guilty, the doctor stared at his papers and at Mitt as he started talking about the test results. It wasn’t until he was about to deliver his verdict that he looked directly at me. “Ann,” he said, “there’s no question what we’re dealing with here. You have multiple sclerosis.”

  Multiple sclerosis. MS. I was absolutely terrified. All I could think was, I’m not even fifty years old, not even fifty years old, and I am never going to have another normal day. It wasn’t precisely a death sentence; he wasn’t telling me I had only so many months to live. Instead, in my mind, I was being sentenced to a radically different and severely limited life. My life as I had been living it was over. I was devastated, totally devastated.

  Like most people, I knew little about MS except that it was a very serious progressive disease and that after a long period of suffering it could be fatal. I knew one person who had had it: the mother of one of Craig’s friends. At one point I had invited her to our house to see some work we’d done and she politely explained, “I’d love to see it, but I don’t think I can walk around. It’s a little too much for me.” I’d been surprised. I was aware that she struggled with fatigue, but I didn’t know she lacked the energy to get around the house. When I was given my diagnosis, she was one of the first people I thought about. That’s me, I thought. That’s my future.

  The doctor showed us the results of the MRI. I heard only bits and pieces of what he was saying. Something about MS being a disease in which your own immune system attacks the protective sheath covering your nerve fibers. He continued talking about this disease, my disease, but my thoughts were racing in every conceivable direction: What could have caused this? What was going to happen to me? How much time before I felt the full effects of the disease?

  Eventually, I asked the only question that really mattered: What is the best treatment and how soon can I begin? If there was a way of fighting this monster, I intended to do it. I wanted my old life back, and I was ready to fight for it.

  There is no treatment, he told me.

  No treatment? How could that be? There had to be something.

  He nodded. Well, there are treatments, he said, but only when your symptoms get worse. Then they would begin treating me with steroids. But it wasn’t time yet, as my symptoms weren’t too bad.

  Really? I thought. Not too bad? Try living my life. I can’t do anything; I have no energy, I feel terrible all the time, I’m falling, I’m losing the sensation of touch in my body. I can barely get out of bed in the morning. I don’t open the mail because I don’t have the energy to deal with it. Not too bad? If this is considered not too bad, that means my life is going to get a whole lot more difficult. And I’m supposed to just go home and wait until my symptoms get worse? I was stunned.

  Mitt has always been more practical than I. He’s a hands-on person. When something is broken, he fixes it himself. But before he begins, he asks direct, pointed questions and focuses on the details. He likes to learn everything possible, and then figure out what to do. But with each answer he was given, my future seemed bleaker. There was little known about the disease and almost nothing known about how to treat it.

  There was one light moment that day. Mitt, looking for some way of reassuring me that we were in this fight together, asked the doctor about intimacy. How does that work, he wondered, and what should we expect? That’s a funny thing, the doctor replied. “I’ve learned that p
eople with MS, they are able to find other ways of expressing their intimacy that can be just as gratifying.” Husbands and wives find their own way, he continued, and then told us the story of one couple who found great satisfaction simply by hooking their pinkies.

  Mitt looked at him as if he were crazy.

  We’ve been through so much since that moment, but we’ve never forgotten it. In fact, since that day, sometimes when we’re together in a stressful situation we’ll grasp pinkies. No one notices it, but that’s our way of asking each other in public, “Was that good for you, honey?” However, it took us a long time, on a journey with many twists and turns, to get to that place.

  Among the many things I’ve learned in those years is that my first reaction to the diagnosis, that I was alone in facing it, was very similar to the response of most people diagnosed with a serious disease or suffering after a devastating injury: This is happening to me. Also, I realized that this was very different from anything I had faced before in my life. Not one of the strategies I had developed and applied throughout my life to deal with personal and family problems was applicable to MS. I was facing a monster, and I had not the slightest idea where to begin.

  The only suggestion that doctor made was to give me the contact information for an MS support group. Sign up, he urged. But there was no way I was going to do anything like that. I didn’t intend to sit back and talk about it. I didn’t have the slightest idea where to start or what to do, but simply accepting the inevitable and waiting until my symptoms got bad enough for me to be treated was not an option.

  I didn’t panic, at least not immediately. I had been taught by my father, a very successful engineer and inventor, a practical man, that panicking did nothing to help or make things easier. His approach, which I had adopted, was to keep a stiff upper lip and not let anyone else be drawn into this with you. Then figure it out.

  This all took place just before the Internet became such an extraordinary source of information. But as I quickly came to understand, there wasn’t much to figure out. From everything I could find, there really wasn’t anything I could do. All the rule books of my life were gone; all the guidelines by which I had lived were gone. And that’s when I felt the first bit of panic.

  MS, I learned, is an autoimmune disease in which your own body is actually eating away the insulation protecting your nerves. I imagined it like an army of Pac Men inside me, chewing away. From everything I could determine, the inevitable outcome would be me sitting in a wheelchair, incapacitated, dying young. My life as I knew it was over. There was nothing I could do to prevent it.

  Among the very first things we did was tell our family, “We think it’s MS.” Their reaction was typical and expected: This couldn’t be happening. Not to us. Not to our family. And especially not to me. “I hung on to that phrase, ‘We think,’” Tagg remembers. “If they just think she has it, she probably doesn’t, because this stuff doesn’t happen to us. I’m sure they’re going to find out it’s something else and it really isn’t a big deal.”

  It took Tagg and all our children several weeks before they accepted the reality that I really was sick, that this wasn’t going away, that all our lives were going to change. There were a lot of tears. When Mitt told his brother, Scott, that I had been diagnosed with MS, Scott broke down. Like us, he knew where this disease was headed.

  Besides Mitt and me, it probably affected our youngest son, Craig, the most. At that time he was a senior in high school, the last of our children living at home. He was old enough to be self-sufficient, and was sympathetic and helpful to me, but it hit him hard because everyone at school was telling him that this was really, really bad news. Several of his classmates told him I was going to die. He tried to be brave, and for a while he said nothing about it to me, but it soon became obvious that something was bothering him. Finally we sat down one day and had a conversation. He asked, “Mom, are you going to die?”

  “Oh, no,” I told him, trying to be more reassuring than I actually felt. “Not from this. Where did you hear that?”

  From his friends, he told me.

  “Well, I will die one day,” I continued, “but this disease isn’t going to kill me.”

  I had to learn how to readjust my own thinking. I had spent my life worrying about my family, but now I had to focus on myself. I didn’t go through a long denial phase. I knew something was seriously wrong with me, and as difficult as it was to accept the diagnosis, part of me was glad to be able to put a name on it. At least I knew my enemy.

  As anyone who has been in a similar situation knows, the first big fight you wage is against depression. I had an overwhelming feeling of frustration, helplessness, and hopelessness. I was very sick, there didn’t seem to be any treatment, and I was getting progressively worse. My mind went to a lonely, dark, very scary place. The disease had made it impossible for me to function, so I would lie in bed thinking about it. I felt like I was on a conveyer belt being carried along and there was nothing I could do to stop it. When I dared look into the future, the only thing I saw was more pain and heartache. Those Pac Men were going to slowly eat away my life. My life was over, I thought. I was never going to have another good day. At the lowest point, in fact, I began wishing that I had a terminal disease that would end my life quickly, because I didn’t want to be taken inch by inch. I wanted it to be over.

  There was nobody I could talk to about it. I felt more alone than I had been at any time of my life. There was nothing anyone could do to help, and I didn’t want to be a burden on anyone.

  Mitt tried as much as possible to be optimistic. But we had been together since I was sixteen years old; I knew him much too well to be fooled. When I looked at him, I could see the brave face that he was trying to put on for me. For the first time in our life together, I knew that no matter how upbeat and cheerful he tried to be, he was as frightened as I was. “We’ll be okay,” he kept telling me. “As long as it isn’t fatal, we’re fine. If you have to be in a wheelchair, I’ll be right there to push it.”

  And I thought, “But I’ll be the one in the wheelchair.”

  Our friends tried to be supportive, too, offering encouragement and volunteering to help, but there really was nothing they could do. We were told several stories about people they knew who’d had MS and were doing well. And several people believed they had the cure for the disease. We heard a wide range of suggestions; people were convinced that if I ate more of this and stayed away from that, or started taking certain nutritional supplements or tried this elixir or that miracle cure, that I could recover from this thing. Their intentions were good, but they made no difference. As much love and support as people offered, I was in this by myself.

  At the same time, there was one thought from which I could draw at least some solace. Several years earlier, Mitt and I had heard an inspiring man named Richard Bushman speak. Professor Bushman was a noted historian then on the faculty of Columbia University, but he also had served as a leader in our Mormon Church in Boston. That day we heard him speak, he told Mitt and me that when he stood on the pulpit looking out upon the congregation, everybody looked so happy. But as he got to meet with these people one by one, he found that every one of them—every single one of them—was carrying a bag of rocks. It might have been anything: a very sick parent, a child with a substance abuse problem, serious financial difficulties. Every one of us, he said, would eventually be carrying a heavy burden, and how we dealt with it would help define our lives.

  I had found my own bag of rocks.

  Two

  WHILE I WAS GROWING UP in Detroit, on some summer nights my father and I would climb up onto the roof of our house and sit there, staring into an endless sky and talking. My father was in awe of the beauty of the universe, but as an engineer, he found the most pleasure in the fact that it was a unified system that worked in predictable ways. There was an order to it. I was about twelve years old when I first heard him talk about God. He was not a religious man, and my two brothers and I rar
ely had been inside a church; my mother had taken us once, maybe twice, to an Easter service, and I had been completely confused by it. My father did not allow any spiritual instruction in our home. But one evening as we sat on that roof, my father surprised me when he said he believed in the existence of God. There must be a God, he told me, to have created something as beautiful as this earth. But then he added that God must no longer be involved with the earth, because of all the misery and unhappiness that took place. The evidence of that, he said, was the Holocaust: God could not possibly have watched that happen without stopping it. That was my father’s only possible explanation for how a God capable of creating such magnificence could also permit such horror.

  After that conversation, I started wondering how the universe worked and if there was a God. I had no one to help me figure it out, no one to answer my questions. In the next few years, I did a lot of reading about the different religions to find out what other people believed—and why. Trying to find out where I fit.

  I was just about to turn sixteen when I met eighteen-year-old Mitt Romney. He was a handsome young man, and I was incredibly attracted to him. His father, George Romney, had been the president of American Motors and was governor of Michigan. The fact that the Romneys were Mormon was well known. One night, after Mitt and I had been on several dates, we drove to a secluded spot at the top of a beautiful hill in his sparkling red AMC Rambler Marlin. We were outside the car, just talking, when Mitt finally leaned over and put his arm around my shoulders. When he did, I looked right into his eyes and said softly, “Oh, so you’re a Mormon.”

  That obviously was not what he was hoping to hear at that moment. He nodded.

  “What do Mormons believe?” I asked. “I’m really curious.”