by Ann Romney
The actual infusions took about an hour. The process is very much like chemotherapy: you relax in a chair while hooked up to a machine that slowly drips a liquid from an IV bag into your vein. Some people read. I couldn’t; my mind was too unsettled to concentrate on anything. I just sat there by myself looking around the room incredulously, wondering how in the world I had ended up there. I had walked into the hospital on my own two feet, but looking at those people in their wheelchairs, I wondered how much longer I would be able to do that.
I would drive back and forth to these treatments by myself. Mitt always offered to go with me, practically insisting on it, but I wouldn’t let him, telling him, “No, absolutely not. I’ll be okay.” I was trying desperately to hold on to whatever independence I had left. I was trying to be as tough as my father would have been. I didn’t want to show the slightest vulnerability or fear, or let anybody see the turmoil boiling inside. In the infusion room, I kept very much to myself. That room is a very public place to have such an extraordinarily private experience.
I knew the steroid was poisoning my body, but that was the price of hope, and I was willing to pay it. Cortisone depletes your calcium, weakening your bones. So I would bring a bottle of Tums with me, because they contain an abundance of calcium. Then I would sit in my infusion chair with a fluid going in my veins taking out my calcium while madly chewing Tums trying to replace it. I knew it made no sense, that it was useless, but it made me feel I was doing something, anything, to fight back.
Since the onset of my symptoms, my attention had been focused entirely on my health. I hadn’t really given much thought about the effects of my diagnosis on anybody else. I guess I began to understand how my illness was changing the dynamics of the family when we all gathered in December 1998 to celebrate Christmas. I don’t think any of my children truly understood the seriousness of my illness until then.
Christmas was my favorite time of the year. We had a lot of family traditions. During the holidays, my job included doing everything. The holiday wasn’t a chore for me; it was my choice, and I leaped happily into it. I loved putting up all the decorations. I loved having everybody home, and buying and wrapping presents. I loved stuffing stockings, and I loved cooking big meals in a warm, crowded, noisy kitchen for our whole family. I looked forward for weeks to skiing with our children and sledding with our grandchildren, and to putting the babies to bed with Mitt and then sitting with him and our boys and their wives in a dark room late into the night as we caught up on all their lives.
So it was shocking to everyone when I could barely get out of bed. There have been very few moments in my life as depressing as lying in bed listening to the subdued chatter of an active family as they each did their best not to disturb me. I tried as much as possible to fulfill my traditional role, and everyone joined me in this pretense. At times the house seemed normal: the lights on the tree were blinking colorfully, the kids were playing downstairs, the boys were involved in some kind of card game, and the music of Perry Como drifting through the house was reminding all of us that there was no place like home for the holidays. But I didn’t have the strength to be part of it. I wanted so much to be part of our family celebration. I wanted to contribute, to be Mom. I couldn’t. This disease was taking everything away from me. I felt so completely left out; the world was going on without me.
Everyone took turns coming into the bedroom room with forced enthusiasm, but we were all living under a thick layer of pretend normalcy. Nobody dared say what was so obvious. We celebrated the entire holiday in denial, perhaps trying to squeeze in just one more family gathering before whatever was coming next. It might not have been so terrible if I’d believed that it was temporary, that it was simply an inconvenient and depressing step toward a better, healthier life. But I knew that it wasn’t temporary, something that would pass like a bad cold. This was my new life.
We had never celebrated a family Christmas without me being in the middle of everything, and everybody tried to pick up the slack. They shared the cooking and the cleaning. Mitt organized the kitchen and actually did some of the cooking. Things got done, but the joy was missing. I tried. I tried so hard. One morning as I lay in bed looking up at the ceiling, I realized I hadn’t gotten a present for Josh. He didn’t need anything and would have understood completely, but I became fixated on that. It became symbolic of everything I was no longer able to do. When I finally told Mitt what was bothering me, he immediately took charge. “Then let’s go,” he said. “Let’s take care of it.”
He helped me into the car, and we drove to a sporting goods store. For a few moments everything was okay: Mitt and I were going shopping for one of our boys. But when we got to the store I realized I just didn’t have the energy to swing my legs out of the car. Walking inside and shopping was completely impossible. I sat in the front seat, feeling utterly defeated, and watched Mitt enter the store. He doesn’t have the slightest idea what he’s doing, I thought, but I loved him so much for his effort. A few minutes later he came back happily swinging a bag.
Our roles had been reversed. “Everything’s getting done,” Mitt said proudly later, sitting down on the bed next to me. I had no bravado left in me. I tried to explain to him how closely what I did was tied to who I was in the family, but Mitt thought that was preposterous.
“Sweetie,” he said softly while stroking my hair. “You know that I appreciate everything you do to make Christmas so special for everyone, but that’s not why I love you.” His next sentence gave me the small dose of hope I needed right at that moment, its simple absurdity striking me to the core. “And I certainly don’t love you because you make the dinners.”
He sat there gently stroking my hair as I closed my eyes and fell asleep.
Mitt had always been wonderful in a crisis. He took action. Once, in the mid-1980s, when we were living in Belmont, Massachusetts, the young son of close friends was playing with matches underneath their basement Ping-Pong table when it caught fire. The boy was running up and down the stairs with glasses of water from the kitchen trying to put the fire out. His father asked him what he was doing, and he said it was nothing. Then his father smelled the smoke. The entire house went up in flames. Mitt got there before the fire department, and ran in and out of the house many times to help save whatever important possessions he could.
This family moved in with us for several weeks until they found a place to stay while their home was being rebuilt. They stored their possessions in our basement—which is where they were when our dryer caught fire! Fortunately, Mitt had made sure all of our fire extinguishers were working, and we quickly put out the flames.
But MS was the kind of crisis even Mitt couldn’t do anything about. There were no actions to take, no fires to put out. It wasn’t that easy.
I was slowly beginning to accept the fact that this was a life sentence. For a while I would go to sleep at night hoping I would wake up in the morning feeling wonderful and realizing that it had all just been a bad dream. But when I woke up the next morning, I wouldn’t feel wonderful. I have always been a person who likes to charge into the day. Yet now I would lie there wondering how I was going to get through it. Among the many changes that had taken place in my life, this was the first time I really had nothing to look forward to. Later I would find out that these feelings are typical of people diagnosed with a chronic illness or suffering a life-changing injury, and that there are different ways of dealing with it. For me, the beginning of that understanding was a phone call from someone I didn’t even know.
The call came unexpectedly—which is how so much in life happens—from a friend of a friend. This woman was about three years more into the disease than I was, and wanted to share what she had learned. “Look,” she practically ordered me, “go get a pen and some paper and start taking notes ’cause I’m going to tell you all the things you’re going to go through and all the challenges you’re going to have. And then I’m going to give you some solutions.”
I got a pen
and paper and listened. “You’ve basically moved into a new body,” she began. “The things you took for granted before are no longer true anymore, and it’s your job to take care of this new body. You have to listen to it and pay more attention to it than you’re used to doing, and you have to understand and accept the fact that you have limitations. This first year is going to require a huge, huge adjustment.” The metaphor for this new reality is the gas tank in a car. I’m not sure if she told me this or if it’s a conclusion I reached, but it goes like this: Every car has a reserve tank, so even when the fuel gauge indicates empty, there is a little extra in there to enable you to get to the next gas station. But with MS, when you run out of gas, there is no reserve. You simply stop short. So you want to stop well before that point, when there are still fumes left in the tank. I would learn this later, as I determined how far this new body of mine would go on what I had left inside. “You can’t go out at night,” she continued. “You have to be in bed. On most days by three o’clock in the afternoon, you’re done. People are going to try to push you a little, because you don’t look any differently to them. They can’t see your new body, so they think they’re doing you a favor. They’re not, and the people who love you most have to understand that you’re not who you were before and can’t do the same things.” Things will change, she promised, as I learned how to conserve my energy and recognize and adjust to the warning signs. “Learn your limitations,” she said.
Then she began talking about alternative therapies. This was the first time anyone had suggested these. I have complete trust in Western medicine, and for the most part, I had never been too interested in or knowledgeable about holistic treatments. What I had read about them didn’t seem to make much sense to me. Some of them seemed pretty way out there. But this friend of a friend opened my eyes to the possibilities of holistic treatments when she said flatly, “There are things out there that will make you feel better.”
While I had my doubts, I wrote down everything she told me. One of the treatments she mentioned doing was something called craniosacral therapy, which I had never heard of. It’s a type of gentle manipulation that balances the fluids in your brain, she explained. It was a relatively new treatment and hadn’t been studied extensively. A lot of medical doctors thought it was nonsense, and told her that she was wasting her money—except that it worked for her. Then she told me about reflexology, which involved applying pressure to the hands and feet. It sounded a little like acupuncture to me. I didn’t make any judgments; I just wrote it down.
She told me about several other equally novel treatments that other people she knew had pursued. Some of them had made no difference, but others had resulted in some success. Normally I would have dismissed all this as some sort of hocus-pocus, but there was no longer any normal for me. I was desperate, and willing to try anything that offered the slightest promise of help.
That phone call made a difference to me. While this woman’s advice and information was to prove very valuable to me, far more important was her underlying message: While she never said it directly, her larger point was that I wasn’t alone. So many other people had faced the same challenges and overcome them—she, for one—and had moved forward to live complete and productive lives.
She was the welcome wagon to the rest of my life.
At first I wasn’t sure what to do with this laundry list of lessons. When I reread my notes and saw words such as craniosacral and reflexology, I took a long, deep breath. Probably more than at any other time during this period, I really missed having Edward Roderick Davies, my wonderful and eccentric father, to turn to for advice. Many of the other people I knew probably would have advised me to forget about all that hocus-pocus and rely on the miracles of science, but not my father. He was a man who embraced all the possibilities of the world. He was a student of nature and all its complexities. He still is the only man I’ve ever known who got really excited when the new issue of National Geographic arrived, and he’d read it from cover to cover—and then insist on sharing the knowledge he’d gained. Until the end of his life, he was curious about absolutely everything, from the minutiae of his grandson’s homework to the way to make a more efficient ski lift.
No problem fazed him. I remember the day my brother Jim brought his future wife, Becky, to our home in Bloomfield Hills, Michigan, to meet our parents. Within minutes of her arrival, my father had her standing in the bathroom holding an eight-foot-long strip of toilet paper. The other end was in a strange-looking toilet. I’ve never seen anybody so excited about a toilet as my dad. The vacuum toilet was a prototype for his latest invention for the navy; it got rid of waste without wasting water. When he flushed it, the paper disappeared almost instantly.
My father’s curiosity never diminished. He died in 1992 from something called a hemangiosarcoma, a fast-growing cancer. As I sat with him in a hospital in Stuart, Florida, saying good-bye, I remember the final advice he gave me: “Ann, I’m so excited for you because you have so much ahead in life. Don’t be afraid of anything.” And then he said, “I’m so sad to be leaving this world because there is so much more to learn. I hate to miss it. I can’t imagine the explosion of knowledge that’s going to happen, and you’re going to be there to see it. Please make the most of every opportunity.”
I couldn’t ignore my father’s words: don’t be afraid of anything. So rather than simply following the path laid out for me by Dr. Weiner, I eventually decided to explore other possibilities. But I didn’t say anything about that decision to Mitt. Not yet. I was quite sure he knew no more about craniosacral therapy than I did.
One point that this friend of a friend made that was difficult for me to embrace was that I had to accept the realities of my new life. For me that meant not just letting people help me, but also asking for help when I needed it. I wasn’t good at that. In fact, I’ve found that few women are. We take such pride in being caregivers, seeing to the needs of our families, that sometimes we forget how to ask for help when we require it. I never thought of myself as Superwoman, but I persisted in doing all the chores around the house, including cleaning, for a long, long time after we easily could have afforded help. That was my choice. It was difficult for me to accept the reality that I couldn’t do those things anymore, that I needed to learn how to depend on other people.
I fought it at first. For most of my life I’d found my identity in being a caregiver. I was the woman who stood up and told a Harvard Business School class that being a mother and homemaker was a full-time job. And I drew great satisfaction from it. So in addition to my new physical limitations, admitting that I could no longer do all that meant a loss of identity for me. That was a difficult psychological hurdle to overcome. My family did everything they could to mitigate this. I knew they loved me unconditionally, but I was in a truly dark spot. Who was I now? I was a person who could not get out of bed. I was a burden.
This is where Mitt stepped in. At my lowest, darkest hour, Mitt pulled me out of that place, saying, “Your worth is not what you do; it’s who you are.” His love for me was overwhelming, and not based on the things I did. He loved me for who I was. His love allowed me to let go of that old identity. Certainly one of the most important lessons I learned as I began to live with this disease was that I couldn’t fight it alone. Nobody can. I was going to need help, and I was going to have to ask my husband and my family and my friends for it.
I turned also to my friend Laraine Wright. Laraine and I had always been each other’s biggest cheerleaders; we were always there to cheer each other on. I had first turned to her because of her medical background. When I was diagnosed, she immediately told me, “We need another opinion.” Her brother, she reminded me, had once been told he had MS, but the diagnosis turned out to be incorrect—he eventually was diagnosed with post-polio, meaning he was relapsing from a childhood case. He was several years ahead of me, too, so Laraine had already been through so much with him.
Laraine immediately fell into the role of my caregi
ver, although I didn’t recognize it right away. My fear was that I would become a burden on my family, so there were things I didn’t easily admit to them. But from the very beginning, I dumped everything on Laraine. I didn’t hide anything from her. One night in early January, I was feeling a little bit better and was desperate to get out of the house. I had tickets to a symphony and asked her to go with me. It was a wonderful evening, and for a time, I was able to forget about my illness and live happily in the music.
After the concert we started walking to the parking lot and I felt all my strength drain out of me, almost as if someone had just pulled a plug. I was dizzy and having a difficult time standing. Getting to the car by myself was impossible. “Laraine,” I said, “can I hold on to your arm, please. I’m losing my balance and I need some help.”
I need some help. It was harder than I thought to say those words. Asking her medical questions was easy; I’d been doing that for many years. Talking to her about my frustrations and my fears wasn’t especially difficult; we were as close as sisters. We’d been through so much together. When Mitt had entered politics in 1994 and run for the Senate against Ted Kennedy, Laraine was with me for all the good days and the last final sad day. When my parents were dying, she was understanding and sympathetic. Emotionally, she had been there for every chapter of my life—but this was different. This was an admission of my vulnerability.
Laraine put out her arm, and I took hold. My eyes welled with tears and when I looked at her, she forced a smile and then turned away. She didn’t want me to see her tears. She helped me back to the car, and I sort of collapsed into the seat. We didn’t speak the whole ride home.