In This Together

by Ann Romney

  Still, he worried. Riding can be very dangerous. Mitt has reminded me often that the most frequent injuries seen in emergency rooms are motorcycle accidents and horseback riding injuries. Riders do get hurt, they break fingers and hands, and unfortunately sometimes they suffer far more grievous injuries. When I went to Margo’s, I already had a bad back and I knew that riding could be very jarring on your spine, so there was at least the possibility that riding would damage my back further. But there was no room for any more fear in my life. I was determined to do this.

  Probably no one was more startled to see me on a horse than Laraine. Ann on a horse? In Boston I had never been around horses or even talked about my love for them. Yet when Laraine came to visit, I took her right to the barn to show her Buddy. She must have thought she had stumbled into another world. The Ann Romney she knew had nothing to do with horses. But that other Ann didn’t exist anymore. “I just can’t get over this,” she kept saying. “You are so brave to get on that huge animal!” When she saw the happiness and strength I got from riding, she didn’t question it; she just shook her head in amazement and enjoyed it.

  When I began riding, I asked Dr. Weiner for his opinion—not his permission. Unless there was some serious risk, I was determined to do it. “How does it make you feel?” he asked. Great, I told him. “Then enjoy it,” he said. His philosophy is that there is no universal treatment for MS. Everyone reacts differently. The only restriction he ever suggested to me was that I should be smart and trust my body to tell me when it was time to quit. So if someone with MS wants to eat a certain food, visit a different country, or start horseback riding, as long as it isn’t dangerous he will encourage them to do it. And if it seems to help, he’ll try to learn something from it that might eventually benefit other patients.

  Finding my passion, finding Margo, who first helped me fulfill it, proved to be extraordinarily important for me, both for getting rid of my depression and for learning how to live with this disease. If Dr. Weiner’s care was the first piece of this puzzle I had to put together, then finding my passion and pursuing it was another vitally important piece. When people ask me how to recover from life-changing events, I always suggest they find their passion. For me, finding something that brought me this much joy at that point in my life made all the difference. It brought me all the way to a very happy place in my life. It made getting out of bed in the morning exciting to me. The second I got up, I would have breakfast and then tear out of the house to go to the barn. I was so excited to be physically able to get up and go that at times I probably pushed myself harder than I should have, and it took its toll, but as soon as I regained my stamina, I was back at it.

  I had so much to learn. As a young girl I’d never had any formal instruction. I’d basically galloped around, trusting Sobie. But Margo taught me the rudimentary skills of dressage; the basic walk, trot, canter; how to post; even how to sit properly on a horse. Buddy, wonderful, patient Buddy, was completely understanding as I fumbled to master those movements. Several of them were especially difficult for me, because my body wouldn’t cooperate. At times it got very frustrating. My brain would tell my muscles what to do, and my muscles would not respond. It was very difficult for me, for example, to learn how to keep my right leg down. I’d lost control of the nerves in that leg, and if I didn’t focus my attention on it, it would just creep up. Margo was always screaming at me, “Get your right heel down! Get your right heel down!” She knew it was hard for me, so she helped by reminding me, often and loudly. Out of frustration, sometimes I’d shout at it, too. I had to discover strategies to compensate for such problems. For example, I cheated just a little by having my stirrups a little shorter than normal.

  Getting thrown off your horse is pretty common in dressage. Everybody who rides eventually hits the dirt, and no one knew how my body would respond to that. Well, we found out about three months after I started riding, when Buddy bucked me off for the first time. Buddy was a good boy, and I felt safe on him, but one afternoon we were outside and I was talking to a vet. I was relaxed, I had a loose rein, my legs weren’t even in the stirrups. Buddy’s head was down and he was quiet. Suddenly a little dust devil, a whirling, twirling burst of wind, came out of nowhere. It picked up a chair and tossed it. Buddy reacted instantly, bucking and taking off. Without the reins in my hands, and with my feet out of the stirrups, there was nothing I could do. I probably could have held on; his bucking wasn’t especially violent. Instead, I decided, I’ll get off now—and I got ejected. I was about to land on my butt, so I put down my hands to protect myself—and broke fingers on both hands. It hurt, but I was able to get right back up. My body was able to take that blow without suffering any serious consequences.

  While we knew the challenges I faced were going to be difficult, we were somewhat surprised that Mitt’s task with the Olympics had turned out to be much more complex than we envisioned. While there was very little I could do to help him on a daily basis, I did make what came to be an important contribution: I bought him a horse.

  Actually, I bought trail horses for both of us. I surprised Mitt with a beautiful Palomino named Trigger. My reason for this was obvious: riding Buddy had proven to be incredibly important therapy for me. It was all-consuming. It required such focus that while I was doing it, I forgot completely about my disease. During that time, my mind was in a different place. Then, within an hour afterward, that feeling of euphoria would fade and I’d remember I didn’t feel so good anymore.

  I thought riding might have similar benefits for Mitt. For a brief period of time it would allow him to escape the overwhelming stress, to get away from the seemingly endless problems he had to deal with every day. Mitt knew how to ride. Earlier in his life he had worked on a ranch. While, as far as the boys were concerned, he had been a cowboy riding the range, he’d actually spent most of the time driving a tractor in a cornfield. But he had also rounded up cattle, set posts, and strung barbed wire, so he was comfortable on a western-style horse.

  At least that’s what I believed. But one of the first times he had to mount his horse, on the side of a mountain, he’d forgotten to tighten the girth. As he began to mount, the horse lowered its neck to chew some grass and Mitt just kept going—right over the horse’s neck.

  I soon discovered that Mitt really wasn’t very knowledgeable about horses. Almost every weekend from May to October, we would saddle our horses and ride up into the mountains. We’d start the morning with a big breakfast at Chick’s Café, a diner in Heber City, and then go out into the pasture to get our horses. Time had frozen in Heber City back in the 1950s, so it was like riding back in time. One Saturday, I was getting our saddles and I told Mitt to go into the pasture, get his horse, and bring it back. He returned a few minutes later, holding the reins of a beautiful horse. “Well, that’s certainly a nice horse, Mitt,” I told him, “but it’s not yours.” The horse was vaguely the same color as Mitt’s horse, and it also had four legs and a tail, so Mitt brought it back.

  Mitt loved these Saturdays. It was the first time—literally the first time—we could just be together without our children. It was such a new experience for us, not having to go from children’s activity to children’s activity. We had spent thirty years focusing on our kids, and suddenly it was just the two of us again. We tried to spend as much time together as possible; we both saw that cloud hanging over my future and wanted to grab every single moment of life while I still had the physical capability. But horse riding also had the effect on him that I had hoped: it became an escape for him, too. He would throw his leg over the saddle, settle in, and start singing. He actually has a melodious voice, but what he lacked in range he more than made up in volume. He was instantly able to put aside his cares and live entirely in the moment.

  Usually we went by ourselves, although many times Kem Gardner would join us. We would pack a lunch and ride into the mountains, leaving all our concerns below. We’d ride around the huge trees and across streams. We’d see the variety of fo
rest animals, from beavers to moose, as we moved away from the realities of our daily life into the peace of nature. Eventually we’d reach a beautiful grassy meadow, where we’d tether our horses, spread a blanket, and picnic on the mountainside. We’d sit there quietly, in no hurry to complete the next task, return the last phone call, make the next appointment, or schedule another meeting. It was as if we were refueling. Through all the difficult moments, neither one of us ever forgot for a moment how truly lucky we were, and we often offered a prayer of gratitude in that meadow. By the time we started down the mountain again, we’d feel ready for whatever was awaiting down there.

  Taking up riding had made a fundamental difference in my life. Instead of wishing that I would die quickly rather than be devoured piece by piece, as I had been thinking only a few months earlier, it helped me learn to live with my disease. I was beginning to figure out the warning signs for when I was about to collapse and develop strategies for dealing with them. I had gotten at least a little comfortable being able to tell people I was done, while not feeling bad about it. And more and more I was appreciative of all the things that I was able to do, rather than being angry about what I could no longer do.

  And I was learning dressage. That was a great challenge. I spent a lot of hours bouncing around in the saddle before I began to make progress. Riding had done so much for me. It helped me feel better physically, it helped lift my depression, it allowed me at least briefly to forget all about my MS, it allowed me to meet an entirely new group of friends and a sweet animal who put up with my failings, and most of all, it gave me Margo. Margo’s joy resonated throughout the barn and was reflected in all the people who worked there. While she would push me past my comfort zone as far as she could, encouraging me to go around one more time, just one more time, there were days when I didn’t have enough energy to ride for more than a few minutes. When that happened we’d just sit and talk, often discussing dressage techniques and strategies, but just as often talking about our problems. With Margo, everything is directed toward some wonderful point in the future. Later I would tell people that nobody would need a therapist if they had a Margo in their life.

  Mitt and I had settled nicely in Salt Lake City. For me, to my surprise and pleasure, it had turned out to be a beginning rather than an end.

  Four

  IT WAS JUST SO HARD for me to accept the fact that there was no cure for MS. Throughout my life I had seen medical science making one incredible breakthrough after another. I was just a little girl when polio was eliminated. Surgeons had learned how to transplant organs and restore hearing to the deaf. Scientists had greatly reduced the number of deaths from heart disease and cancer. Orthopedic surgeons were implanting artificial joints to restore lost mobility. It seemed that every day I was reading about some kind of new miracle cure or treatment or breakthrough—so it was hard for me to understand why researchers had made such little progress in discovering the causes, effective treatment methods, or potential cures for MS, ALS, Parkinson’s disease, Alzheimer’s disease, brain tumors, or any of the whole range of neurologic diseases. (Researchers actually knew more about MS than they did about ALS or Alzheimer’s disease.)

  At least with MS they understood what happened in the brain to cause the symptoms, but they didn’t know why it started, how it progressed, why each case was so different, how to prevent it or stop it, how to cure it, or how to repair a damaged brain. Dr. Weiner had proven that, in some cases, steroids could slow down the progression of the disease and even alleviate some of the symptoms, but even he didn’t understand why they worked only for certain patients. If I needed a new heart, they could give me one. If I needed new knees, that was easy. It would take only a couple of hours to restore my vision to near its original acuity. But there was no cure for my disease.

  Disorders of the brain remain one of the great medical mysteries. People have been trying for centuries to find something, anything, that might make a difference. Between 5000 and 3000 BC, Indian physicians were treating a disease remarkably similar to Parkinson’s with the root of Withania somnifera (also known as Indian ginseng), the seed of Mucuna pruriens (Bak), the root of Sida cordifolia (country mallow), and the fruit of Hyoscyamus reticulatus (henband). In the seventh century BC, the physician and mathematician Pythagoras described dementia as the last of the six phases of life, when “mortal existence closes … where the mind is reduced to the imbecility of the first epoch of infancy.”

  Physicians in almost every civilization have used potions, herbs, and incantations to treat these diseases. In the sixteenth century, Renaissance alchemists were prescribing gold preparations for a range of neurologic and psychiatric disorders. By the eighteenth century, quacks were marketing an array of completely useless elixirs and bizarre treatments to desperate people willing to pay for them. Even into the twentieth century, supposedly enlightened scientists were conducting lobotomies, literally cutting out pieces of the brain, in the belief that they might cut out the diseased area without causing permanent neurologic damage.

  Before I was diagnosed and learned that there was no cure, it was a lot easier for me to shake my head in disbelief that people would turn to unusual treatments. But after my diagnosis, when a friend of a friend, a very intelligent and rational woman, suggested I investigate alternative medicine, I listened to her. The reason is pretty obvious: Why not? What did I have to lose by trying different treatments? Many of the people I’d spoken with told me about various alternative treatments that had worked for them. They pointed out that there was no scientific evidence to support a specific treatment, so they couldn’t tell me why it had worked, only that it had worked. I remember talking to Dr. Weiner about this, and he was surprisingly open to it. “The brain is a very powerful force in terms of our health,” he told me. “For example, I always teach doctors that it’s vitally important to leave every patient with hope. I don’t want them to lie, but I want them to create hope. A positive attitude can be very important, wherever it comes from. We don’t know what it does precisely, but we do know it can make a difference.”

  That phrase, alternative medicine, covers a lot of territory. In recent years it has come to include many different potential treatments outside science-based Western medicine. For example, it includes holistic medicine, which treats the whole person rather than the specific disease. It’s one of the oldest forms of therapy. In the fourth century BC, Socrates warned that treating one part of the body was not sufficient. Another form of medicine is the traditional Hindu practice of ayurveda, a plant-based pseudoscientific approach. The list of potential treatments is long. People have found value in meditation, homeopathy, massage and spinal manipulation, and certainly acupuncture, yoga, diet, supplements, aromatherapy, biofeedback, herbs, and spices.

  Before that first long phone call with this wonderful friend of a friend, for example, I had never heard of craniosacral therapy, developed in the 1970s. It sounds a little strange. Essentially a practitioner lightly touches your skull, face, spine, and pelvis, which supposedly causes spinal fluid to move around until it is in balance. At one time, I probably would have dismissed it without much thought, but when this woman told me that it had made a big difference in her life, I paid attention. While Dr. Weiner’s treatments appeared to have stopped the progression of the disease, at least temporarily, I was still very weak and got tired quickly. And the infusions always left me feeling awful. Resuming riding had been a tremendous boost for my spirit, and had helped lift my depression, but it hadn’t had much of an impact on my symptoms. I was still too tired too often.

  When I got to Salt Lake City, the idea of trying alternative medicine had drifted to the back of my mind. Then my back went out, and a friend suggested I go to a reflexologist for help. My initial reaction was humor: my back hurts; why would you press on my feet? I had been suffering from back pain for ten years. I had first herniated a disc while water skiing, and had had many episodes in the years since. I would go through the usual course of taking pain medicat
ion, lying on my back, and doing physical therapy. As anyone who has a herniated disc knows, it hurts, and for days after, I would be so crippled by the pain that I couldn’t walk on my own. Barbara, a friend of mine, told me, “I got someone you should see. There’s a guy I go to when my back goes out. It really helps. He’s a reflexologist.”

  I didn’t have the slightest idea what a reflexologist did, or where you went to find one, but my world had changed so completely in the past few months that I was instantly and entirely open to the idea. If she had told me that standing on my head and singing “The Battle Hymn of the Republic” would alleviate my back pain, I would have done that, too. I was far beyond being judgmental about things I didn’t understand. Actually, I doubted reflexology would help, but I knew for certain I had nothing to lose.

  Reflexology is a distant cousin to acupuncture. As Barbara explained to me, depending on where the pain is, the reflexologist applied pressure with his thumbs on specific places on the bottom of your feet supposedly to stimulate the nerves that run through the source of the pain and increase blood flow to that area. There is absolutely no scientific evidence that it works, except this woman sitting next to me told me it had significantly reduced her back pain. It certainly sounded like hocus-pocus to me, but I wrote down the phone number.

  A man with a heavy German accent answered the phone, but I could hear enthusiasm in his voice. I told him I was having back problems. I didn’t say a word about my MS. I didn’t feel there was any need to complicate the situation. “Yah,” he would see me, he said, and informed me that a session with him would cost ten dollars.