by Ann Romney
Personally, I may be in remission, but like all of us, I’m never more than the next phone call away from being reminded how terrible these diseases are. There’s an expression used in the fund-raising community: put a face on a disease. This means remind people that we are all affected in some way. Believe me, as far as neurologic diseases go, that’s a reminder we don’t need: none of us is ever very far away from these diseases, whether they affect us or the people we love. We got another call reminding us of just that in the summer of 2014, from Mitt’s former chief of staff and campaign manager, Beth Myers. Beth is an extraordinary person who has been an active participant in the fight against neurologic diseases for years. One Saturday afternoon during that summer, she was simply having a drink on Nantucket when suddenly she went partially numb on her left side. Initially she thought it was a stroke. Physicians at Nantucket Hospital were not sure, but they thought it was a neurologic issue.
Beth and I spoke almost immediately, and I told her how important it was to see the right doctors. While she was her usual calm and commanding self, we both wanted her to get the best possible medical care as quickly as possible. She was airlifted by helicopter off Nantucket and told they were taking her to Mass General, another world-class hospital. That’s where her treatment began.
It took the doctors there some time to diagnose her illness. Diagnosing neurologic diseases can be very tricky. It remains a sometimes inexact science. One hears from doctors a lot of we don’t know, we can’t tell, this could be, and worse, we can’t predict. While this was going on for Beth, Mitt and I were with our family at Lake Winnipesaukee in New Hampshire. Beth came up to join us and we waited for her results together, spending time talking. There are a great number of neurologic diseases and conditions beyond the five being studied at the center, and there is little doubt that advances in any one of those diseases can eventually have a profound effect on any of the others.
Beth’s disease is clever. It hides in the brain. When Dr. Weiner originally looked at her MRI results, he thought they looked pretty good, but in actuality they weren’t so great. Eventually her doctors came to believe she probably has something called cerebral amyloid angiopathy, which is essentially a build-up of the same type of plaque Dr. Selkoe has been working with for decades, but in this disease the deposits are found in the blood vessels of the central nervous system. The result is a proclivity to bleeding in the brain. The prognosis is variable: the disease process could take years, but it sometimes leads to additional strokes. Like so many of these diseases the not knowing, the unpredictability of it, makes it even harder to deal with than those diseases about which so much more is known. Meanwhile, Beth is following the best of all possible paths: continuing to be Beth. While she is aware that at some point this chronic disease may be a problem, she is determined not to be defined or limited by it, and to continue to lead a happy, healthy, and productive life.
The research being done at the center may well prove important to Beth—and millions of other people who eventually will get involved in these battles. The more we learn about the brain, about those deposits, the more likely it is we will find the way to deal with them.
Having already explored some of this territory with both Natalie and me, Beth is very knowledgeable about it. But at these times it’s always important to have your own Margo and Laraine, people you can talk to honestly and openly, who can help you deal with it. The first thing I told Beth was that eventually she was going to go to that dark place in her mind—and when she was there, as difficult as it was to believe and accept it, she had to focus on the fact that she was going to come back from there. Then I reminded her that as great as her doctors are, nobody, absolutely nobody, was going to pay as much attention to her getting well as she was. Take risks, I told her; get out of that comfort zone and try anything and everything. I gave her much of the same advice I had learned and lived by and passed along, but eventually it came down to one simple rule: Live your life. Don’t let a diagnosis stop you from being you. Don’t let your disease define you. While everyone has responsibilities they have to take care of, start sorting out those things you need or want to do from those things you don’t want to do. Beth got it, and told me she had finally reached the point where if she didn’t really want to do something, she didn’t do it.
While Beth is being treated by the experts in her disease at Mass General, and is participating in studies, she also is paying close attention to the research being done at the center. The creation of the Ann Romney Center for Neurologic Diseases was announced in October 2014, although the formal dedication was delayed until the move into the brand-new building in 2016.
One of the first initiatives we’ve taken is the launching of a social media campaign entitled 50 Million Faces, a website (https://www.50millionfaces.org) and Twitter account (@50MillionFaces) where people affected by the five brain diseases being studied can share their stories. This includes families and caregivers as well as patients. Like so many Americans, I watched with delight as the Ice Bucket Challenge in 2014 brought incredible attention to, as well as raising about one hundred million dollars for, the fight against ALS. Mitt and I and all our boys, and most of our twenty-three grandchildren participated. Obviously you can’t do something like that again, but it was amazing to watch it catch fire. We took the message from that and tried to figure out how to reach the most people possible to create a similar response.
Montel Williams and Jack Osborne, both of whom have MS, joined me in founding the site. The message we’re trying to communicate is that we’ve all been wounded and we’re all wearing our battle scars, but together we can go out and fight. It is incredibly important that anyone suffering from one of these diseases knows they are not alone. I remember feeling so terribly alone. It’s an awful feeling, and if we can prevent people from the worst impact of that, we will have accomplished something. The stories that people have posted on the site and on Twitter are honest and tough and hopeful and, too often, sad. They are the stories of people who have shown tremendous courage. Some of them will make you cry. The stories are different, but they have one thing in common: they are the stories of people who have felt the effects of neurologic diseases and have joined with us to help find treatments and cures. As we hoped, they are putting a face, 50 million faces, to these diseases.
They include people such as Denise Hodgkins, who wrote:
I am writing this for my mother. The strong mother who worked and took care of three kids by herself … Loved us so much that every memory still makes me smile. This lovely person has progressive MS … She has been blind, she has been embarrassed for the falls in public, she has had to crawl to the restroom when her legs gave up on her … I have cringed when she would call and say she blacked out while shopping or was yelled at for parking in the handicap [spot] … I recently crawled into bed and curled into a ball after a very upsetting phone call when she told me how upset she was with the neurologist for he had the nerve to tell her to prepare for the worst.
“Just two years ago my husband was a research scientist, distinguished lecturer and competitive Ironman triathlete,” writes Lina Clark. “Today he is fighting for his life. ALS has gained awareness but there is still no treatment! Clinical trials and drug development takes 10–15 years and costs tens of millions. This has to change…”
Patrick O’Keefe, thirty-three years old, wrote that he “has been able to fend off a primary brain tumor since being diagnosed in 2006. I have undergone three successful brain tumor resection surgeries and a few rounds of oral chemotherapy … I am one of the lucky ones who has had great care and a treatable form of this disease. I am married and the father of a beautiful 8 month old daughter … My biggest challenge is to compartmentalize my anxieties so it doesn’t effect [sic] my job, my family, and my friendships. We need to get beyond just ‘treatments’ and find a ‘cure’ once and for all, so that so many don’t have to face these challenges.”
While the immediate focus of the center is on th
e five diseases, 50 Million Faces is rapidly becoming the community center for people with any one of the too many different neurologic diseases. Amy Jeanette Benitez was diagnosed with myasthenia gravis in 2012, when she was twenty-one years old, and was transformed “from the girl with the smile from ear to ear to looking frozen. Daily gym days are gone forever! Struggling to comb my own hair, dressing myself, picking up my own legs to step or passing on dinner with a loved one ’cause you know you can’t chew or swallow your food properly … I have MG. MG doesn’t have me!”
These contributions often are written by friends and caregivers, who pay tribute to people like “My friend Aaron Loder [who] fought ALS for 11 years. He lost the battle on Monday [April 2015] but we will never give up the fight.” And they come from everywhere in the world, including really close to home. Dr. Weiner posted a photograph of himself with his mother, and wrote, “Here’s my mother and I in the Colorado Rockies before she developed Alzheimer’s disease. She knew I was a ‘famous doctor’ working on multiple sclerosis. After she developed Alzheimer’s disease her mind became clouded and all she knew was that she had a brain disease and that her son was a brain doctor. She said to me, ‘Howie, can’t you help me with this?’ Unfortunately, there was nothing I could do at that time. But now we can do something through the work we are doing here at the Ann Romney Center so others won’t have to experience what she went through.”
Our goal was probably best expressed by Ginger Maner, who wrote, “I have been fighting the Monster since 2008 when I lost my right eyesight. Since then MS has impacted my life in ways that I never clearly thought it would … My biggest fear is that my daughters will end up with MS. I do not want them or anyone else to ever hear the words, ‘You have MS’ again. MS doesn’t just impact you, but everyone in your life. I am very thankful that steps are being made to bring more awareness and help, not only to MS, but the other diseases.”
I’m inspired by Ginger “fighting the Monster.” The only way a war is won against a formidable foe is with a large and committed army. Those of us who have been touched by neurologic diseases are the infantry of that army (especially those like me who have been given a temporary reprieve from its most debilitating symptoms). Doctors and researchers are the intelligence officers, analyzing where to aim the weapons. Pharmaceutical and imaging companies build those weapons and supply the ammo. In the past, it felt like our army was failing not only to make progress, but even to coordinate and collaborate on a battle plan. Today, the wounded like Ginger Maner are standing up and fighting, the researchers are sharing their insights, and the corporations are aiming in the right direction for progress. GE’s Jeffrey Immelt announced that his company is moving out of financial services and redirecting its investment toward industrial businesses like health care, where half a billion dollars will be devoted to neurological research. Treatments have already changed the battlefield, and new, more promising weapons are in the pipeline.
Being part of an army changes a person, particularly when you came to that army involuntarily. My family has noticed a change in me as I have fought my disease. I am more determined, more assertive, more inquisitive, less willing to accept excuses and delays, more dependent on God, and far more appreciative for every good thing in life and love. In this, I know I’m not alone: many people I have come to know that have endured hardship reflect that in some ways they are grateful for their trial. It brought them greater understanding and revealed personal qualities they would not have developed any other way. No, we don’t celebrate the hardship and pain, but we do recognize what it has brought out in us.
Even so, there is pain and suffering that never heals: those who have lost a child or spouse, another family member, or a friend always endure a hollow in their heart. Nor can any one person expect to escape permanently from sorrow and hardship. As people first experience a burden, they often wonder “why me?” The answer is straightforward: “Because you are a mortal living in a mortal world, because everyone suffers loss and pain and ultimately death.” What distinguishes us is how we respond to the trials we confront. I cannot judge those who succumb to depression and despair, who slip into the shadow of defeat. I was there myself for a time. I have been in a very dark hole, if just for a moment, but long enough to have been taught by a cruel teacher.
But I also know that some burdens, even ones that appear overwhelmingly heavy, are sometimes borne with courage and vitality. Nelson Mandela endured years upon years of prison and emerged as a loving and forgiving man who was able to transform a nation and inspire the world. Stephanie Nielson had 80 percent of her body burned, suffered excruciating pain, watched her children shrink in horror from the sight of her, and then rebuilt her life as a mother, wife, and author.
I have noted earlier that at a very dark time in my battle with MS, I was given a blessing by Elder Henry Eyring and by my husband. Among the words they spoke were these: “The Lord has accepted your sacrifice, Ann. You will go through a healing process, and through that process you will gain greater appreciation and understanding of the atonement of Jesus Christ.” The healing has indeed been a process, and that process will continue. My understanding of Christ’s atonement has also grown, as promised. I know that many people do not believe that Jesus was the Son of God or even that he was a divine personage. But for them, too, there are lessons from His atonement.
Jesus was God—or, if you are a nonbeliever, a man who was the personification of all that is good and noble. He cared for the poor and the sick. He extolled the outcast Samaritan and criticized the haughty Pharisees. He gave sermons of love and forgiveness that inspire to this day. In the history of humankind, there could not be a being less deserving of crucifixion. But He willingly subjected Himself to death, entering the city He knew would kill him. He confronted his peril. We, too, can confront our disease and despair.
I am a soldier in this army, continuing to learn about these diseases and about the people who fight them on every single level. While I’m not going to be the person looking into a microscope who one day finds that key that changes so many lives forever, I am going to be working as hard as I can to make certain that day happens, and soon. The one promise I can make is simple, and I believe it with all my heart: hope is on the way.
Afterword: The Work of the Ann Romney Center
IN EARLY 2013, it seemed impossible to believe that a decade had raced by from the day Mitt was inaugurated as the governor of Massachusetts to the conclusion of our final campaign. We had crammed a lifetime in political years into such a brief span of time. It also remained amazing and exciting to me how far I had come physically since those darkest days. My disease was essentially in remission. I had remained in contact with Dr. Weiner, visiting the center at least once each year for a checkup and, like every MS patient, following the progress of researchers in Boston and around the world as they hunted down and tried to destroy my monster. The fear that I’m always one day away from another attack has never dissipated. It’s still there in the corner of my mind. I know I can be right back at that dark place instantly, and honestly, I don’t know if I have the energy to fight it like I did before. So when I visit Dr. Weiner in Boston, while I always enjoy seeing him, it isn’t a social call. I want to know what’s in the pipeline for people like me, who have already been diagnosed and are fighting this thing, as well as those people who someday will turn a corner and be confronted by this disease.
The organizational structure of Dr. Weiner and Dr. Selkoe’s lab was always a little confusing for me. They each ran their own centers; Dr. Weiner saw MS patients at the MS Clinical Research Unit at Brigham and Women’s Hospital, while Dr. Selkoe saw Alzheimer’s patients in his unit. In addition, they served as codirectors of the Center for Neurologic Diseases, where cutting-edge research and experimentation were being conducted.
It seemed that each time I visited through the years, I could see the MS research unit growing. What was necessary for the next step, Dr. Weiner knew, was a facility dedicated to the clini
cal study of MS. And Dr. Selkoe always pointed out, one day for Alzheimer’s, too. Dr. Weiner needed a building in which the examining rooms, infusion rooms, physical therapy rooms, office space, storage space, and all the research labs would be a short walk away—and, he always added somewhat wistfully, an MRI for the exclusive use of MS patients.
Weiner raised four million dollars to fund the MS center, but he had been unable to find the right space. When substantial room became available above the Harvard Medical School bookstore, directly across the street from the hodgepodge of space the center then occupied, Dr. Weiner knew it was perfect. But there was considerable competition for that space, and every competitor believed his or her need was greatest. I’ve known Howard Weiner for almost two decades, and in that time I’ve never seen him lose his temper once. His intensity and his sense of purpose, and sense of humor, had always successfully masked whatever anger or frustration he was feeling. But from the stories I’ve heard, this was not the case in this situation: Apparently he let loose his temper. He threw a major-league tantrum, yelling and screaming for almost an hour, explaining why he both needed and deserved that space for a new MS center. Days later, he even sent a dying member of the hospital board, a supporter of the center, to see the administrator to plead his case. It worked. The new MS center, complete with that all-important MRI that I would get to know, opened on April 25, 2000. At the dedication, Dr. Weiner told the staff, at that time slightly more than one hundred twenty-five people, “This is where we’ll stay until we find a cure for MS.”
The Neurologic Center, the place where the experimentation is taking place, also has continued to grow. Presently it consists of twenty-two different labs and about two hundred fifty people working at the bench conducting experiments. A modern lab doesn’t look anything at all like a war room, but that’s actually what this is. From here, science wages war with disease. There’s nothing very exciting to look at. It’s mostly long tables with all the equipment normally associated with scientific research sitting on top or on shelves. There are books and microscopes, large pieces of equipment, copy machines, and computers, lots of computers. Generally it’s quiet, but every time I visited, there seemed to be the hum of optimism in the air. And every time I saw Dr. Weiner he seemed about to burst with excitement over the results of some test or study. “For the first time, in this decade we really have seen patients doing better,” he told me once. “I now have patients coming in whom I can examine, give them an MRI and other tests, and be able to tell with certainty whether or not they had this disease. More than that, I was able to separate my patients into two groups, easy patients and hard patients. In the past, they were all hard patients.”