Cerebrum Article

Shadowboxing with Multiple Sclerosis

Richard M. Cohen, a writer and consultant for the National Academy of Sciences, has lived with MS for more than 25 years. He takes us into the ring with this mysterious adversary who bobs, weaves, and cannot be seen with clarity, asking how anyone can keep balance in the face of such high-stakes ambiguity.

Published: January 1, 2001

The math workbook seemed suitably silly for a second grader, and my daughter, Lily, was groaning about how boring it all was. I eased into a chair next to her, staring intently at the instructions before checking her answers.

My 20/200 vision, legal blindness by any standard, makes navigating the printed page a constant challenge. My search for sense in the written message goes line by line, word by word; it is a slow decoding process that simply does not end. The problem on this night, however, became following the simple logic of second grade. The instructions were giving me trouble: Should I be adding or subtracting? My confusion irritated Lily and made me quickly and quietly wish that Mom were home—which, of course, only further eroded my confidence and my control.

In fact, my confidence lags daily, and control left me behind long ago, replaced by dreadful dependency and doubt. I cannot drive. I can barely keep track of and be responsible for my young children; I simply cannot keep up with them or spot them at any distance. Cognitive problems are increasing, small surprises that accompany life’s little tasks. Chronic exhaustion sends me to bed before the kids on many a night. I even find myself nodding off at the computer, sometimes before noon. Just thinking about it makes me tired.

“Narcolepsy-like features” is how Lauren Caruso, a clinical neuropsychologist who specializes in multiple sclerosis, describes aspects of this fatigue. “Narcolepsy and MS are two diseases that seem to have a relationship,” says Dr. Caruso. “Maybe they are cousins.” Despite years of research, scientists still have not determined exactly what that relationship is, but molecular geneticist Masahi Yanagisawa has observed that about 90 percent of narcolepsy patients have a specific gene for human leucocyte antigen, which is commonly associated with autoimmune disorders, including MS.

My hands do not function well anymore, either. I have trouble shaving and brushing my teeth. Taking care of myself feels practically like full-time work. Putting on a shirt and buttoning it can take many minutes. It’s that top button and left cuff that are showstoppers. I’ve long since given away my bow ties. I used to be able to put on pants while standing. That is out of reach now. My legs also fail me.

“I watch through a damaged lens as my entire right side slowly fails. It is like feeling the shudder of a machine as it slows and gradually skips beats. My machine is wearing out. It might just stop, and there is no warranty.” © Jennifer Hewitson

Then there is my daily routine. Running the gauntlet—stumbling, in fact. I navigate the streets of New York City every day, challenge enough for the sighted. Low vision is an adventure. It is humbling to reach out for help all the time, especially to lean heavily on a spouse already stressed by a high-pressure job. It alters a relationship, turning wife into mother. My cherished independence has vanished, replaced by nothing short of childlike needs and beleaguered self-esteem.

I try not to take it all so seriously, but it feels serious. I watch through a damaged lens as my entire right side slowly fails. It is like feeling the shudder of a machine as it slows and gradually skips beats. My machine is wearing out. It might just stop, and there is no warranty. My right arm just hangs sometimes, fingers limp, overcome by numbness. I try to will my grasp into being, with little feeling or response. My right leg, also, is weak and unresponsive. My foot frequently drags. Steps are my enemy.

Eroding Cognition

The crisis now is my increasing cognitive problems. They are the worst. Middle-of-the-night worries about my foot call up calmer responses than concerns about my mind. I seek safe passage across the black holes where words and specific thoughts once flourished. Such complaints are not unusual for those of us with MS.

“There are commonalities,” says Dr. Caruso. “Memory is the most reported cognitive complaint. But executive functions, like attention, concentration, organizing, and information processing are also affected.”

“Over fifty percent of people who have MS have some sort of cognitive problems,” according to Stephen Reingold, neurologist and research chief at the National Multiple Sclerosis Society.

Recognizing and understanding cognitive problems, then dealing with them, is not easy. That pursuit has brought new meaning to Plan B, alternative mechanisms for reasoning and coping. These difficulties are subtle and come on slowly. Which of them do I attribute to MS, as opposed to aging or too many good times in the sixties? Everyone grasps for words as they grow older, and I am sure many of us over 50 climb the stairs only to wonder why we bothered. With me, though, the difficulties seem to happen more frequently. They just feel different.

Staring repeatedly at my reading glasses resting on the washing machine, determined not to forget them as I fold laundry, ends with a frantic search for them. I am moved to panic and anger at myself. Intending to switch subway lines underground at Times Square, instead I find myself at street level, wondering how I got there.

“The problem is more prominent than what I think aging brings,” says Kit Crow, who has MS. “My memory is slower,” Crow says dispassionately, “to think what I have to say. I have trouble with the day or month or what year it is. And driving anywhere. Directions are not really easy for me.”

She also has trouble remembering faces. I grasp for names, even of people I know. But it is the confusion that gets to me. How to follow simple instructions. Sudden uncertainty at the keyboard of my computer. I have more frequent spelling difficulties than I used to. Decisions about what to wear or pack are tedious. I used to make those in a flash. If I am carrying a number of objects, I will unwittingly let go of one, thinking there was nothing in that hand. I do not always know where my hands or my feet are.

Susan Thomases, Democratic powerhouse and Clinton confidante, says that cognitive problems from MS drove her from her life’s work. “In order to do sustained work in the practice of law, in a complicated transaction, you have to keep multiple pieces in the air at the same time. You have to weave them together,” Thomases explains. “Keeping them all in the air proved incredibly difficult. I would drop one or more of them at the most inappropriate times.” And so she quit. Most people probably do not realize just how frustrating, indeed frightening, these lapses can be. “I was really worrying that I was going crazy,” says Thomases, “whole pieces of my brain were falling apart.”

It is an unnerving feeling that I know well.

“There is stress, anxiety, depression,” Dr. Caruso points out. “These things don’t help cognition at all.” She offers this perspective: “With MS, it’s usually mild to moderate cognitive change. We’re not talking about dementia, but it’s enough to make things different.” Perhaps enough to make people like me overreact.

One drug that MS patients are using for cognition problems is Ritalin, commonly given to hyperactive children. “If somebody said to me, ‘you must go back to work,’ I would take Ritalin, with all the downsides,” says Thomases. “Ginkgo doesn’t do it.” But Dr. Caruso argues, “I’ve seen MS patients on Ritalin, and I haven’t seen it be helpful. They are doing things faster, but they are not coming out better.”

There seems to be a common, shared sense of desperation about cognitive problems among MS sufferers. That is where many of us draw the line on patience and will try most anything. But it’s all so subjective, too. How do you analyze your own limitations, when it is your mind that is failing? In the absence of help now, I just wait and watch.

“There is drug called Aricept on the market for Alzheimer’s disease. Now there are clinical trials to use it on people with MS, so there is reason to believe that there is the possibility of pharmaceutical therapy,” says Dr. Reingold.

The Mysterious Foe

I used to run from MS, the intruder trying to break into my body. It has finally caught me, and at last I accept that it is inside me. I don’t know where I am going, though. My ticket has no destination printed on it. My 27 years in neurologists’ examining rooms have yielded little but predictable prescriptions for prednisone and the physical and psychological pandemonium that for me invariably follows steroid use.

I inject myself with Avonex, interferon 1B, once every week. This relatively new drug may—may—retard the progress of the disease. Effectiveness can only be measured against what might have been without it, however. No one ever talks of cures. Nothing will be reversed. The only question is where the disease will go next. Ambiguity is a constant companion.

The sentence of Sisyphus imposed on me is a daily foray into the ring, shadowboxing with MS, an opponent that bobs and weaves and proves, always, more fleet of foot than I. This is my adversary, a sinister figure, darting into the darkness, not mine to observe, except, perhaps, in the mirror.

Look. There. Can you see it? MS is a mysterious foe, a living, seething beast. MS is my monument to how little brain science knows.

Learning the News

The phone rang one muggy evening many years ago in my third-floor walk-up on Capitol Hill. It was 1973. I was a junior producer for ABC News, covering the Watergate hearings in the Senate, the “Sam Ervin Show.” I sat and stared at the ringing phone for a moment. It was the appointed hour to hear the news. I knew it was my doctor.

He was at his most casual. Cold, really.

This was my neurologist, the man with an empty black bag, plying his primitive trade.

His resident had administered the spinal tap, high science and the ultimate diagnostic tool for identifying MS at that time. Today, it seems as outdated as leeches. If the spinal fluid looked cloudy, they would say I had the disease.

It did.

“You have MS” was about all the man said, adding a perfunctory, “I’m sorry.”

There was nothing more to say.

“I used to be too busy fleeing MS to look closely and squint. Running with eyes closed tightly is risky, however, and so, too, is ignorance. My objective now is to understand that which cannot be much understood. I have decided to step into the boxing ring with my shadow.” © Jennifer Hewitson

Later, he would recommend a book about living with multiple sclerosis, published by St. Joseph Hospital in Seattle. I don’t know whether that hospital still exists. I hope the book does not. The thin volume only suggested taking life easy and cultivating an appreciation for the smell of flowers and the hope of a sunny day. Please. This, apparently, was medicine at its best and just what an ambitious 25-year-old journalist wanted to hear.

Some close friends and family recommended getting out of television news and finding a job that allowed for afternoon naps. “You should get disability insurance,” my father had said before the diagnosis was official. “You won’t be able to get it after that.” He counseled me never to talk about my new problem with anyone. And for a long time, I told almost no one, not even most friends. Some visited me in the hospital, unaware of exactly why I was there. MS was my secret, and my obsessive secrecy became my mistake. It was hard to sort out. Treating the disease as something private made it feel larger and scarier. I was alone. Yet my bosses told me later that they had to admit they might not have hired me if they had known.

“I can assure you, MS is not genetic,” a highly respected epidemiologist told me back then. I did not believe it then. I do not believe it now.

Such was the quality of high emotion and conjecture masquerading as information and reassurance coming at me. I took a deep breath and sighed, allowing the numbness to set in. It is still with me.

Twenty-five seems a tender age for dealing with such life-altering news, but MS is most frequently diagnosed when people are between 20 and 40. I understood that my life would change and had the sinking feeling that I would have to recalibrate my expectations for myself. But I was damned sure I would not change course and abandon my dreams. Advice seemed useless. Who knew anything worth sharing?

My doctors knew not, and I, for one, knew they knew not. They communicated with shrugs. I am not sure how much they know today. Not much has changed in the nearly 30 years since I was given the news. Nuclear medicine has streamlined the diagnostic process, with brain images that show lesions caused by MS. But quality-of-life issues and unsettling doubts about the future seem not to have changed at all.

My MS is progressive, and my decline is slow. I have been spared the form called relapsing and remitting MS, which comes and goes erratically. I am grateful—I hate roller coasters. As I look around me and talk to other MS patients, I feel lucky. Many are in worse shape than am I, on walkers or in wheelchairs. Some are confined to bed. I do feel fortunate, and I remind myself of that often.

No U-Turns

Those of us with MS must face a few truths together. We are not going to get better. We should understand that. There is no treatment anywhere that amounts to anything more than fruitless hope; and hope must be contained. The ABC drugs (Avonex, Betaseron, Copaxone) draw neurology’s Maginot Line. They may stop the enemy or, more likely, slow its progress. Or these much-touted drugs may, in fact, do nothing. No credible practitioner speaks of a drug-induced U-turn. This is it, friends. With other diseases, there can be some hope of cure. A whimsical dream, perhaps. But not for us.

Curiously, that seems okay, at least to me. I have become a fatalist. The realities of the disease must be processed and, over time, accepted. Perhaps we should rest our hope for relief with the next generation of MS patients. But, for us, there exists the need at least to understand what is happening to us. If knowledge is power, it also may provide the closest point in our orbits to controlling our own flights.

For me, the mission of understanding the disease is a new one. I used to be too busy fleeing MS to look closely and squint. Running with eyes closed tightly is risky, however, and so, too, is ignorance. My objective now is to understand that which cannot be much understood. I have decided to step into the boxing ring with my shadow.

“But I believe denial, at least my version, which is to rise up, is essentially a coping device. It is a mechanism, a useful tool for pulling myself out of the quicksand and living a real life…I view denial as positive. In its own way, it has been empowering.” © Jennifer Hewitson

MS has been considered a disease of the central nervous system, which to me connotes trouble on the spinal highway running down my back. Not so, of course. MS is really a disease of the brain. My vision problems, for example, stem from neuritis in my optic nerves, which connect the retina to the brain. The retina, in fact, is brain tissue, which means the nerve runs brain to brain. The lesions caused by the demyelination, sheaths peeling off sensory or motor nerves like peeling insulation on an old-fashioned switchboard, usually occur in the brain. This is the arena, and it presents a frightening specter: a malfunction of the brain. This isn’t my left foot. It’s my mind.

Humiliations and Challenges

The most important daily task for the person who lives with MS is to keep emotional equilibrium intact. This is no small matter for people who live with the constant limitations of life with low vision, foot drag that makes mobility difficult and sends us sprawling in the streets, or bowel and bladder dysfunction that can imprison us in our homes.

It is nothing less than humiliating to fall on Fifth Avenue because my foot can’t clear the curb. To wind up sprawled across the sidewalk because I tripped over a crack. Papers and books go flying, and I apologize to other pedestrians, strangers who rush over, thinking I might have had a heart attack. These are the times I come closest to crying.

Then there are the other humiliations. I’ve been refused a bottle of wine in a liquor store because I am unsteady on my feet and my speech slurs slightly when I am tired. “You’re not feeling well,” the clerk will tell me. “You should go home now.” It was only after turning to a cane for help, when my problem became visible, that I could understand what people had believed about me. “We all thought he had a drinking problem,” one mother told my wife at a Little League game.

The low vision, though, is what most compromises my sense of myself as a strong character. It touches a thousand daily tasks. It creates my permanent status as a passenger. I must deal with a dependency that will never become comfortable. In my years at CBS News and CNN, I covered wars and politics from Beirut to Boston, Salvador to Seattle, Warsaw to Washington. Now I just cover one city as I travel from point A to point B in New York, trying to find my way and struggling not to stumble. I was counterphobic once, I suppose. I needed to prove something about myself to myself. I needed to show that I could do what frightened me. I scared myself nearly to death, but I did it.

The Upside of Denial

My life is good. It is. I must never lose sight of that. My children had a teacher whose husband suffers from MS and has lost all function below his neck. For me, that is unimaginable. There are always those whose MS experiences exceed mine. They provide a valuable frame of reference for those of us who elude victim status.

Curiously, though, holding on tight and remaining hopeful, staying positive and upbeat—seeming happy—is to be labeled a denier. To rise above unhappiness, apparently, is to exist in denial. But what is so wrong about this so-called denial? It works for me.

“There is a fine line between trying to cruise along, trying to make the best of whatever problems you may have, and perhaps a health professional thinking that you aren’t addressing things,” according to Dr. Caruso. “I wouldn’t call somebody a denier unless I could really see that there was something coming right at them, and their actions were such that they were almost going against what would be good for them.”

Fair enough.

But I believe denial, at least my version, which is to rise up, is an essential coping device. It is a mechanism, a useful tool for pulling myself out of the quicksand and living a real life. I do not respect wallflowers and have no plans to become one. Professional victims impinge on their own lives. My so-called denial has implicitly extended permission to my friends and family to see me as strong. I view denial as positive. In its own way, it has been empowering.

Family and Future

Life goes on. I stay on that shaky course toward a successful existence. If I am on target, though, I hold desperate concerns about my children.

“About twenty percent of people who have MS can identify another family member who either has the disease or had the disease,” according to Dr. Reingold. “A great aunt, or something like that.” He goes further. “There is a genetic susceptibility,” he says authoritatively, “but MS is not an inherited disease.”

But I am the third generation in a direct line in my family to grapple with multiple sclerosis. Conventional wisdom concedes a familial link but denies a direct genetic component. Emotionally, I can’t accept that. Never mind me; what is going to happen to my kids? My wife and mother have both said they would have never borne children if they believed they would be visited by multiple sclerosis. I find that curious. Life is a crapshoot to begin with, and my life and my father’s life are not tragedies. He practiced medicine for 40 years and raised a good family. I have traveled the world in pursuit of news, and I hope that when I am older, I, too, can say I have a good family. But I do not want this disease for my children.

“In the general population, about one in a thousand people has MS,” according to Dr. Reingold. “If MS is in your family already, your risk will go up to between two and five in a hundred. It is not a substantially increased risk.”

Sometimes, odds and risk are in the eye of the beholder.

“I’d worry much more about your children getting hit by a bus,” adds Dr. Reingold.

There is ample reason to continue worrying, however. Jorge Oksenberg, an MS genetic researcher at the University of California, San Francisco, argues that families such as mine are unusual and that the rules of the road do not necessarily apply. “Sometimes, with subtypes of pedigrees, the rules of inheritance are totally different. I would also add to the complexity of the question that a family like yours might have additional factors that are not present in other families.”

“So, I don’t accept any assurances,” I said. “I couldn’t agree with you more,” he replied. So I watch and wait.

Running with MS

In a meaningful way, there is a small, qualitative benefit to illness. I feel that I am a better person because I have a serious illness (not that I wouldn’t trade it in for a used car). I learned to cut to the chase a long time ago. I believe I possess a refined sense of what is important in life. I don’t sweat the small stuff, an attitude that others seem to find infuriating. Many folks do not choose their battles carefully. I think I am a gentler person than I once was. If I have been made stronger by the weight of my baggage, I want to believe I am also more sensitive. I tell my friends that I am only being punished for throwing my tennis racket across the court in anger when I was young and foolish.

What I tell others, even strangers seeking my counsel, young people newly diagnosed with MS, goes to the crux of everything I believe about living with a serious illness: Do what makes you feel good about yourself. For me, that means going through life with humor and dignity. It calls for the recognition that others are more seriously ill and grievously impaired than I. And it requires regular reminders, quiet conversations with myself, that I am not a victim. To become a victim is to give up the ship.

Young people dealing with MS for the first time and struggling with the bad news must pay attention to their psychological well-being and begin that process immediately. There will be plenty of time to go for another MRI; it’s time to begin adjusting. This disease takes a lifetime to get used to, and there is more to your head than disintegrating myelin.

My advice is simple. Run with MS, not from it. We move with grace when the wind is at our backs.