Word Power

March 1, 2010

When White House Chief of Staff Rahm Emanuel last month characterized a plan by liberal activists to air attack ads opposing conservative Democrats as “retarded,” he did not need the expletive that preceded the term to offend many. The word “retarded,” when used in this way, is unacceptable. Not only does it hurt vulnerable people, but it cheapens us, and Emanuel may well spend a good part of his career apologizing for his callousness.

But let’s be honest here. Who among us has not used the term “retard” among friends, in safe circles, never to be quoted or even attributed? We laugh it off, excusing each other’s bad taste. The most sensitive among us wince and look the other way.

There’s no denying the power of language to define or wound. Almost all of us occasionally use expressions that demean, based on race or gender or mental health.

What do we say then? “Mentally challenged” is a little too politically correct for my taste. “People whose faculties are compromised” seems weak, almost defenseless. Some of these people are defenseless already without us labeling them as such. Historically, they’ve been treated cruelly, even imprisoned, in parts of the United States. We want to believe that times have changed. But the battle is not over.

Unkind language keeps narrow-minded attitudes alive. Old labels feed old prejudices. In our society, one group or another always draws the short straw, and too often it’s the sick, physically and psychologically, who bear the brunt of our linguistic cruelty.

Recently, I let slip with a “you’re crazy,” and was gently lectured by a friend who lives with bipolar disorder and is active in the mental health community.

“You are perpetuating stereotypes,” he said firmly.

“But it was intended to be so benign,” I protested. He just looked me in the eye in silence.

Even words that a generation or two ago were acceptable now reveal public prejudice in all its ugliness. New York City’s respected Hospital for Special Surgery used to be called the Hospital for the Ruptured and Crippled. Georgia’s first state psychiatric facility was the Georgia Lunatic Asylum. You could not make those up.

The name of the Newington Home for Crippled Children in Connecticut, which began its existence as the Newington Home for Incurables, was changed to Connecticut Children’s Medical Center more than a generation ago. When I was growing up, “crippled” always seemed a neutral term to me. It seems harsh now. Maybe any word Charles Dickens used is automatically off limits. Tiny Tim needs a name change fast. Ask a guy on a cane about words. Walk a mile in his prescription shoes.

I am legally blind, a measure of how much of my eyesight has been lost to my MS. That is a legal distinction in virtually every state. Legally sightless? There are no degrees of sightlessness.

And then there are “handicapped” and “disabled.” I know people who find the word handicapped judgmental. My mother thinks disabled means one cannot function at all. I am agnostic on this one. How about “differently-abled”? That’s a popular term now, but it seems silly to me. I think handicaps should be reserved for golfers. Throughout my 25-year battle with MS, I have spent a lot of time proving to myself that I can do. I am abled. So don’t foist your terminology on me. You don’t know me. Leave me out of your word box.

“Words are loaded pistols,” Jean-Paul Sartre wrote. Rahm Emanuel—and the rest of us—would do well to remember that.

An Angry Man

February 22, 2010

I get angry sometimes. Maybe too many times. Illnesses have been hanging around my doorstep for decades. The multiple sclerosis is an old companion and only progresses, robbing me of eyesight, motor skills, really the ability to live as I choose. Progress has been slow and steady, and I do not know my destination.

Buttoning shirts and tying shoes, getting where I need to go—all of life’s little tasks—become epic battles. Looking for an address or just crossing the street become difficult challenges. It sounds petty, but it adds up. I do not complain much. I am just explaining now, I swear. I do swear. Loudly, as I get mad.

Colon cancer attacked me at the end of the last millennium and took its toll. My brush with that killer touched off an anger that rocked the house. Rage is a better word to describe my demeanor at that time, when the crucible brought Hell too close for comfort. I was thrown off kilter as the cancer came calling a second time, piling on top of the multiple sclerosis I had battled for decades. I was roaring.

My wife, Meredith, told me I was hurting my children and her with my outbursts and silent sulking. I became cold and distant from those around me, and they are the ones who love me. Something had to give. With Meredith’s help, I found control and I learned not to point weapons in the house. The damage had been done, but reparations followed, and the love of a family won out.

Still, I am an angry person. The line has been crossed. My dependence on others has increased even as I have fought it with all the strength I could muster. The falls are all too common now, in the street or down the stairs. There is a self-loathing that can neither be denied nor explained. High emotion is directed at myself.

When Meredith comments on my anger, she says it upsets everyone in the family. The boys have gone off to college, so I put our 17-year-old daughter, Lily, on the witness stand. She did not hesitate: “It is not pleasant being around your anger, hearing you yelling.” Does it hurt the family? Lily paused. “Well, it doesn’t help,” she answered, pulling her punches, I thought.

I have always distinguished between blasting those around me and firing into the air. I have long believed that anger is a valid coping mechanism if it is a victimless crime. There may be no such thing. Lily told me that just because my anger is not directed at her doesn’t mean it does not get to her.

At the same time, bottling up feelings serves no one either. Like the bubble under the rug, sooner or later it will pop up. Anger is a piece of the defiance I feel toward my problems. I will not go gentle into that good night. Dylan Thomas’s formula for dying is mine for living.

My father puzzled me with his consistent passive acceptance of his MS. He was forced to leave the practice of medicine, which he loved almost as much as he loved his family. He went from cane to walker to wheelchair. The old man lost his treasured independence. Aren’t you ever angry? I asked him. “Why should I be angry? Things could be worse,” he calmly responded. His mother had the disease before him and never complained either.

Perhaps it is childish to rail at what we cannot control. My friend Larry, who appeared in my book Strong at the Broken Places and has appeared in this column, laughed and offered to send me to anger management school. Larry lives with bipolar disorder. It once wrecked his life, but he somehow found his own road to peace.

“Richard,” he tells me, “service is at the core of peace. My experiences broke me, until I learned to serve others.” Larry’s pull to serve others was intuitive.

I, too, am committed to helping others—in my case, the disabled and chronically ill. That work offers wonderful satisfaction. I wish it brought me peace.

Running Out of Ammunition

February 01, 2010

American medicine is the best in the world—as any American doctor will tell you. They should know, or at least believe. And there is some truth to the claim, particularly if you’re afflicted by some malady—breast cancer, coronary heart disease—whose rate of mortality has declined steadily in the last decade.

But what happens when you have a chronic condition, as I do, for which no good treatment has materialized despite decades of research? Physicians seem to have a lot of ammunition, but more often than not they don’t seem to be hitting the broad side of the barn with whatever they’re firing. My progressive MS long has had the best and brightest shooting blanks. My doctors are good people quickly running out of options.

The interferons did nothing to stop the progress of the illness. IV steroids offer mere moments of slightly enhanced muscle strength that has no lasting power. The steroids threaten bone density, which is especially problematic for some of my friends with MS, who are either cutting back or cutting it out altogether.

I recently embarked on a six-month regimen of chemotherapy, which has weakened me, turned my hair grey or white (depending on who you ask), and transformed me into a fragile fellow who might take a tumble in a strong wind. The process was done at the cancer center in a New York City hospital. The fellowship there was moving. The bald patients in baseball caps provided a stark reminder of how sick others are, and that things always can be worse. Not a bad lesson.

Now I give myself daily injections of a drug intended for another form of MS. A waste of time, I think sometimes. Next up could be IVIG (intravenous immune globulin), a plasma product containing antibodies from thousands of donors. In theory the plasma combo fights invading armies of pathogens. But anyway, this exotic treatment has been denied by my insurance provider.

Doctors cannot be faulted for throwing everything they have at a disease. Sometimes it helps, they say. Usually it does not, I reply. But it sure beats doing nothing, if only for psychological reasons. Frustration knows no end, though I am hardly the only one in this position.

Incurable chronic illnesses can often be managed, sometimes survived, but are never seen in the rearview mirror. Patients’ expectations can be out of whack and highly unrealistic with these conditions. Happy endings are elusive, but we must continue chasing them. Too often, though, we expect better communication from our doctors than we get, especially when it seems that nothing’s working.

“When we do not get answers, and doctors are aloof with us, it’s like we have no say in our treatment,” says my pal Buzz Bay, who has non-Hodgkin’s lymphoma. Buzz’s Indiana doctors are out of ideas; worse yet, they don’t seem to communicate—with him or with each other. “We are fighting against the uncertainty,” Buzz says emphatically. Buzz never used to doubt or even question his doctors. He endured three long rounds of chemotherapy and one of radiation. And then, after a period of quiet, the cancer bared its teeth again.

What Buzz wants—to “look at options and see what’s out there, be it alternative medicine or a second or third opinion”—isn’t so difficult to understand. He’s fighting for his life, and his frustration now borders on anger. “It’s like they’re saying, ‘I’ve done everything I can for you. Bye,’ ” he says.

Long ago I learned never to stop pushing either the limits of medicine or those who dispense it and walk away. We have to be our own advocates. Who better to do that than the person in the hospital bed? I would rather be treated in the U.S. than anywhere else in the world, but I would like to be treated a little bit better.

Unplanned Flight

January 15, 2010

My body stretches forward in perfect flight, parallel to earth, with arms outstretched as if to grab the air. Launch has been involuntary, and the landing pad a sidewalk or street, busy with pedestrians or vehicles or unkind cracks that sent me flying in the first place. Grace is gone, lost with a thud and a gasp, personal effects tumbling gradually down around me.

This is my life: primitive flight, Kitty Hawk revisited. At least the Wright brothers had a goal, a dream to work toward. All I want is to stay on earth, feet planted surely on the ground. But illness has its own plan. I cannot control the disease overtaking me any more than I can choreograph my every misstep and crash landing.

I am not alone in mid-air. Falling is the dread fear of the elderly, the sick. We know when we are at risk because the graceless spills come, no matter how careful we think we are. I have escaped injury beyond the inevitable cuts and bruises, but not so my wounded ego.

Humiliation upon falling is immediate. Damn. Apologies flow rapid-fire, as if the crash was planned and carried out with evil intent. We cannot help it. Illness and disability attack self-esteem, and what more public show of my lack of control can there be? I wish I could guide motion and emotion with a stronger hand, but I lost control long ago.

The problem is more than a wounded ego, however. My sense of self is at stake. I am gratefully aware that I am strong of spirit, if not body. Frailer humans may not be so fortunate.

Emergency rooms have welcomed legions of us veterans of flight, the injured requiring stitches or casts to be made whole again. These people must have little patience for any suggestion that mishaps should be greeted with nonchalance. No big thing. It is a big thing. I have learned to laugh at myself frequently enough, but I want to cry each time an accidental flight sends me spiraling to the ground.

We cannot give up our freedom and mobility, or love of walking, and stay emotionally whole. This is who we are. I will not sit at home because I dare not venture down the street anymore. Admonitions to be careful suggest that any of us is reckless. My mother used to tell me to be careful when I slipped behind the wheel. I chuckled.

Add up the illnesses around us that compromise eyesight or impede mobility. It is a wonder we are not all smashing into each other all the time. Age alone puts us at risk of taking that unwanted header to nowhere.

But life is about choices. Most of us understand risk. We recognize reckless and unacceptable brinksmanship when we see it. The line we must not cross rests at that point when risk is too great and no longer is acceptable. Then, then, perhaps, the unthinkable: a walker.

Just kidding. For me to suggest that those at risk should go for the walker is pure hypocrisy, not to put a fine point on it. My aversion to such devices is well known, though not necessarily sensible. If there is no answer, my answer is this.

I am a believer in pushing the envelope. Keep going until you can go no more. Then take stock of your life. Live with risk until it is time to stop. Know where that line is. Then, grow up and do what you have to. Then teach me to do the same.

In Denial? Not Him

January 1, 2010

A woman I know struggles to walk, even with a cane, but she angrily rejects her diagnosis of multiple sclerosis. Another would rather stagger and sway like a drunk than admit to her illness.

Me? I just don’t talk much about it.

This seems to offend those who think people should wear medical records on the outside of their clothing, as they do designer fashion labels. Years ago, I sat at the edge of the narrow examination table, listening while a neurologist lectured medical students as if I were not even in the neighborhood.

“He is in denial,” the doc announced, gesturing at an ostensibly inanimate object: me, sitting mute. “I deny that,” I blurted out, probably surprising some that I could talk.

The medical students thought I was joking. Actually, I was angry, sick of smug neurologists. I’ve grown tired of doctors long on opinions and short on insight picking apart my approach to an illness that I’ve been battling for decades.

It’s not just the medical community coming down on me. Friends and family have long accused me of being in denial, hiding from reality and failing to address the endless problems that go with multiple sclerosis. To them, my jokes about my illness seem to mean that I am not taking the disease seriously. Apparently I do not cast my eyes down enough and whisper, “Yes, I have MS, your honor. Take me away.”

Do people think I am having too good a time with this incurable degenerative disease that can decimate my life?

Actually, I am not having a very good time at all. Numbness and the frequent inability to move my body at will are no treat. Loss of control is horrifying. Yet I do not spend energy beating my breast over worst-case scenarios. Bathing in grimness seems pointless.

Instead, I have chosen to live a life that assumes limitless possibility. It is not that the disease is not here and taking its toll. However, until proved otherwise, I am in charge and fully intending to win. Call it hubris, but I believe I am cagier than a collection of errant cells.

Let’s get one thing straight: I do not deny I have a debilitating disease with a scary name. But denying the inevitability of the outcome is a different story. That is my prerogative, and I defend it every chance I get. A little bit of magical thinking is a recipe for people like me to get up every day and go back at it. And, yes, climbing back into the ring after taking a licking for days on end does require a certain reservoir of chutzpah. Call it denial. To me it is performance art. Why it irritates others so much is a bit of a mystery.

Second Class Sickness

December 1, 2009

Pat Deegan calls herself a psychiatric survivor. She is by her own reckoning a consumer and ex-patient. She is a lesbian and mother, a Phd. and professor. Pat writes that she was diagnosed with schizophrenia as a teenager, in a turbulent period in which identity was fluid and stigma was a way of life.

Also evolving was Pat’s mental illness, then approaching full blossom. Pat remembers when she was in school and says, “I thought everybody was looking at me. I was paranoid.” She takes the challenge a step further. “Could I sit n a class without freaking out?” Pat thought they would just kick her out of school. “I carried a tape recorder so I could record classes, go home and listen later when I felt safe.” Pat had to deal with paranoid thoughts she was having everyday.

“I would hear voices. There is no way around it.” Pat elaborated. “These were distressing voices. I heard voices. It is how I am. I used to think getting well means no more big vulnerabilities, no giant issues to deal with.” The layers of stigma are complex. They speak to the ignorance of an unkind society. Beyond others, the danger of stigma is that it becomes its own disease and can poison the way we feel about ourselves.

“Society’s messages are embedded in culture, from music to Hollywood spectaculars. We are surrounded by messages of fitting in. Culture struggles with difference, Ann adds. “We are different, broken in the eyes of so many, unable to make choices.” Pat argues that those messages begin to seep in and define how we feel about ourselves. “We internalize these views and begin to hate ourselves. So how do I learn to love myself when we have been devalued and marginalized?”

Pat Deegan says she has learned to accept herself. My trauma history is a gift, and I am a better person for it.” The challenge for us is to open our minds and care. When I wrote Strong at the Broken Places, a book about living with chronic illnesses, my decision to include a mental illness was based on the startling statistic that one in five Americans lives with symptoms of a mental illness.

That choice was intuitive and bloodless. I did not care. The mentally ill fell well-outside my comfort zone. I knew little about conditions I found frightening and regarded those affected as outside he mainstream. I had grown up making fun of these people. That was a piece of backyard culture. I used the word, crazy, not always silently, which spoke volumes, loud and clear, about my own thoughtless discrimination.

The word for brutal behavior toward mental illness still is stigma. Stigma was soft in my mind, though in reality, hard and hurtful. This was an attitude steeped in ignorance.. A marker of all I did not know and how little progress we have made characterizing mental illnesses as a serious chronic condition, no different from MS, certain cancers, and whatever.

Unkind attitudes are the least of the offense of stigma. Employment and opportunity, housing rights and simple inclusion into society are areas of particular cruelty. Acceptance. Ignorance flows into communities, through schools and churches and across back fences.

When I visited the old psychiatric hospital at Milledgeville, Georgia, where more than twenty-five thousand patients (prisoners, if you will, or inmates) are buried anonymously, finally, I got it. My mind opened, so did my heart. Larry Fricks, who was part of the movement to restore abandoned graves, speaks openly about time spent in psychiatric institutions and jails and what it was like to be forced into the back of a police car with no control over his destination.

This had become part of his identity what he saw in the mirror. “People thought my mind, too, was broken, and I could not be trusted.” To the world, Larry was his bipolar disorder. Nothing more. Larry does not use the word, stigma. Putting the word out there only increases the stigma. He finds the term discrimination more appropriate, anyway.

When Clifford Beers, who lived with bipolar disorder his whole life attended Yale at the turn of the twentieth century, he vowed to fight discrimination against the mentally ill in the open. Later, iron shackles that had harnessed people like Beers to institution walls were melted to form the bell that is the symbol of Mental Health America, an off-shoot of an organization Beers fathered so long ago.

Cast from the shackles which bound them” the citation reads,,” this Bell shall ring out for the mentally ill and victory over Mental Illness.”

Life From a Sitting Position

December 1, 2009

Growing older was quietly painful for me, as I watched my father’s multiple sclerosis advance ahead of mine. My old man had done the same with his mother, who shared the illness.

Our family has an unusual neurological pedigree. We also have a determination not to let it beat us down. My dad would fall and lie helpless on sidewalks and stairs, refusing to concede defeat, which he seemed to define as relying on a cane or a walker. Ultimately, though, that day arrived: my dad, like his mom, finished his life in a wheelchair.

In the dark of night, I imagine in detail where I am headed. I must admit that even as my legs begin to fail, I regard the prospect of a life sentence to a metal chair with special horror, as if I have been there before.

Will it be as awful as I anticipate? I seek out insight from those who know.

Bob Schmonsees has used a wheelchair since he was broadsided by another skier on a slope in Pennsylvania almost 30 years ago.

Do you regard this contraption as a prison? I ask.

“The situation was the prison, the chair an enabling factor,” Bob replies after a moment’s thought. Seven years after his accident, Bob realized he had been in denial and endured a short bout of depression. Then he got rolling again and proved he could still have a life. “I became the top-ranked player over 40 in wheelchair tennis,” he says.

Was that liberating?

“Yes, and gratifying.”

Bob continued as an avid golfer and even ventured back onto the ski slopes, though later he realized that skiing strained his shoulders. Ultimately, he gave up tennis, too, and now deals with the intestinal problems that go with sitting for so long. Still, “I have a good life,” he says.

Then am I a wimp to fear a future in a chair?

“Absolutely not,” comes his quick reply. “You are in a bad situation. This would be a traumatic change. Look, people make using a wheelchair worse than it is, but it ain’t no fun.”

Perhaps a wheelchair isn’t inevitable for me. But in my gut, I believe it is. Eventually, my ability to ambulate will be gone. A walker is next. The rest will follow.

Now a startling admission: I am a wimp. When I was chased through the streets of Warsaw covering the rise of Solidarity for CBS News, or when I ducked bullets in Beirut and El Salvador, I learned to be resourceful. I also came to know mortality and the truth that anything can happen. But now I am covering a different war, with an enemy hidden in my body. And this is the first enemy I truly fear.

I talk to Allen Rucker, who has transverse myelitis, which some people call MS of the spine, another autoimmune disease. “It was frightening,” he says of the moment when he realized that he was paralyzed. Soon enough, he was introduced to his new wheelchair, the mode of transportation he would use for the rest of his life.

“I always considered the wheelchair liberating,” he tells me. “My favorite recreation was to wait until three in the morning and tool around Cedars-Sinai Hospital looking at the incredible art on the walls.”

This was Allen’s private proving ground, his way of easing into his new life.

“Richard, with you there will be nothing sudden about this,” he tells me. “You already are preparing yourself for what might be.”

Allen pauses for emphasis.

“You are on this gradual course,” he continues. “You don’t know it, but you will find it liberating. There is true mobility in a wheelchair. It’s not a horrible thing. You should lighten up.”


“There always will be the stigma,” he concedes. “People will still think you are a pathetic person. There will be a sense of pity, a sort of death by kindness. You will learn to ignore it.”

Hard to imagine. And pointless, too. What will be will be. I have better things to do than play out worst-case scenarios. I understand risk. I loved toying with it when I was younger.

And yet the wheelchair is so threatening, perhaps because it’s the final public signal of unbeatable weakness and the irrevocable admission that I have lost the war.

I have stood up to this illness for my entire adult life and lived my way. I cannot make my peace with the finality of sitting down.

Invisible Gifts

December 1, 2009

In a scene from the Hollywood classic It’s a Wonderful Life, George Bailey yells at Uncle Billy: “Where’s that money, you silly stupid old fool? Where’s that money? Do you realize what this means? It means bankruptcy and scandal, and prison. That’s what it means.”

This season, these are familiar terms. Just open a newspaper: economic uncertainty hangs over us. Missing now, and perhaps for a long time to come, is the innocent sound of laughter and jingle bells in the distance. The uncomplicated joys of the season—little kids on skates, bright eyes that light the sky—seem to go unnoticed.

The holidays are always hard. That is not new. We tend to use these joyous days in a strange way, to measure our lives against expectations, where we are versus where we wish to be. Disappointment comes too easily. Whatever our faith, gratitude for what we have slips beneath the fast-moving fear of failure that says all is at risk or, worse, lost. We seem to be sacrificing this special moment.

The chronically ill—almost 130 million of us—at least have this going for us: we routinely sail directly into a harsh wind, always at risk of going nowhere and even losing it all. We know what matters: what to care about and what to move to the back of our minds. We do not sweat the small stuff.

If you don’t believe that health is life’s most precious gift, go to one who does not know if he or she will sit at the table with those they love next year. The sick may have learned to live in the moment in ways few others understand. We have no choice. We have nowhere else to go, no matter who or where we are.

Life is precious. The sick understand that as well as anyone. Nothing lasts forever. We have figured that out, too. What is gone in my life, even with all the uncertainty and hardship, helps me focus on what is still there. I do keep learning, as do others around me.

My college-age children know that life is unfair, and they cherish what they have. Their parents see to that, and it is a full-time job. My kids see illness in the family. I hope they never lose what they have learned around the kitchen table: that there are others in the world in need of their help. My kids know they are not the center of the universe. What more important seasonal message is there?

We, the sick, do not often feel sorry for ourselves. Carrying around self-pity is a terrible way to live. That load is large. The road is long. But don’t ask us to get exercised if Citigroup stock is down, or if business investments do not return to 100 percent anytime soon. Those tragedies miss the point and are for the chronically healthy to sort out. Maybe we have different ideas about what is important.

A wheelchair is likely in my future—but this holiday season it sits silent in the back of my mind. Every day that I struggle down the steps to the subway is another day I can live on my own terms. I am grateful. Each week in which I can do for myself is a gift.

Back to It’s a Wonderful Life: in the movie, George Bailey doubts that his life matters, and so he disappears from the earth. Seeing life without himself, his wife, and children convinces him otherwise. He is not as powerless as he thought. Neither are the chronically ill. We have a lot to live for and much to do. We need to stand up straight and kiss somebody. We should smile, wish someone happy holidays, then get on with it.

A Diminished Man?

November 1, 2009

I used to be a player, but now I am a spectator, sitting in the stands as others scramble for the ball I once slammed across the net or carried down the field. I used to hike with my wife, climbing the steep slopes of summer or trudging the back roads of fall as the foliage changed from green to gold and inevitably into a dark, withering suggestion of what it had been.

Perhaps the crumbling leaf is a metaphor for the conventional life, in which all seasons are known and change comes at its own rhythm. Such a time on the planet is to be cherished and celebrated.

Autumn comes early for people with chronic illness, sometimes very early. For those who learn loss in their youth, the physically active world stands at a distance, and they are forced to sit it out. For those of us who knew the exhilarating expectation of the limitless life for at least a few decades, the quality of loss is different. Our hands grasped the fullness of what might be. We had it all before we had to watch in horror as it slipped away.

Arms, hands, fingers start to fail. The silver screen of vision begins to fade to black. Standing turns to sitting. Muscles shrink. The list goes on.

My diagnosis of multiple sclerosis came at 25. My eyesight was ravaged by age 30. Function faded through the years, and the crumbling continues. But one thing I can say with conviction is that I’ve had—I still have—a great life.

The question the chronically ill must answer is this: are we going to be victims? Not me. When I first heard my diagnosis, I made the instant decision to keep going for the gold. It must have been in my DNA; I grew up with a sick father who never gave in. I had no illusions about defeating MS, but I knew that I would win in my life. My determination was never in question.

There is no prescription for perseverance. We have to reach down deep to find it from within. When the world says we can’t, we have to tell ourselves we can. On the theory that this is our one shot in this world, we must go for it with gusto. We must never let illness cause us to lose faith in ourselves, to become spectators of life rather than players.

Truth is, I’m only stuck in the bleachers when I get down on myself for being less than I was, too often forgetting I am, in fact, more because I have learned the hard way.

When the day arrived that I could no longer run or toss a ball with my young children, it hurt me more grievously then it hurt them. They hardly seemed to notice. We substituted chess for football and learned to talk about ideas as we struggled to kill each other’s kings.

Today, my children are in college. There is a palpable joy in our house when they return home with the portion of tales they are willing to share with their parents. Only the laughter upstairs hints at what the other portions say. Success in life can be viewed in the eyes of happy children.

Long ago, I wrote an essay in which I said that a diminished man lives in my house. I believed that back then. I used to measure my life by the flawed yardstick of physical abilities alone. I have since discovered the cerebral world; I know now that who I am is in my head.

I’m no longer sure what diminished means, even as my body continues to fail and cognitive problems plague me. Shouldn’t a life be judged by what it means to others? Shouldn’t we be measured by more than the power of our biceps or the strength of our legs?

I have helped raise a successful family. My beautiful wife lies next to me every night. I have chased news around the world, written books, and said what I have to say. Maybe we all should be so lucky. Too often, we who are chronically ill fall into the trap of measuring ourselves by conventional means and not by what we are able to give to those around us.

But You Look So Good

October 1, 2009

I stumble upon the website during an idle Google search. It is devoted to the day-to-day struggles of folks with chronic illness. The title, “But You Look So Good,” is sarcastically scrawled in a messy hand across the top of the page. I smile. For many of us, that tongue-in-cheek sentiment is all too familiar, the meaning clear: really, you cannot look that good and be so sick.

A young woman I know encounters this attitude all the time. “My illness is hidden,” says Sarah Levin Weiss, who has Crohn’s disease that almost killed her more than once. “I take Prednisone [a powerful, oral steroid] every day, so I have rosy cheeks. I look pretty healthy.”

Sarah has grown weary of people—some strangers, generally well intentioned—telling her how good she looks. That same thing often happens to me. “What did you expect?” I sometimes respond if I know the person. “A cadaver?”

A tension can exist between how we feel and how sick we appear in the eyes of others. When people want to believe we are healthy, then logically—sort of—that becomes how we think we should feel. “That constant tension is emotionally draining,” Sarah says. “We are forced to live a lie to make others feel better.”

The most insincere question in the language, of course, is the simple query, “How are you?”

With me, the word “fine” frequently explodes before I even hear the question mark. Who wants to be bothered? Illness may be a part of life, but as with death, we too often fail to make our peace. One reason a chronic condition may become intensely private is that we realize others do not really want to hear the truth.

“It is emotionally easier for someone to look at you as healthy and holding your own,” Sarah says. Her appearance, no matter how misleading, extends permission not to view her as a sick person. She must be doing well, casual friends and neighbors are relieved to assume.

“Is that okay with you?” I ask.

Sarah laughs. “Sometimes it makes me feel as if I have to prove that I am not feeling well, that things are not good.”

“Why do you care what people think?” I say. “These are your battles, not theirs.”

She pauses and giggles. “Sometimes I care for no particular reason. Sometimes I figure the hell with it, and keep my mouth shut.”

I can understand why she does that. So many in this land share a value system that places a premium on physical perfection and beauty. We look away from the crutches, canes, and wheelchairs. We do not want to see that kind of imperfection. But the reality is that chronic illness is everywhere: heart disease, pulmonary problems, neurodegenerative illnesses, certain cancers, diabetes, various forms of arthritis, and many, many other conditions that are on the rise. Current figures say more than 137 million Americans battle a chronic illness or two.

Still we remain a hidden population. We cannot see each other and do not recognize ourselves. Chronic illness is in our national photograph, yet we want to focus only on the family farmer, the train steaming across the heartland, the baseball slugger bringing thousands to their feet in that snapshot.

Look there, up in the corner! See the figure in the hospital bed? That person is a part of the American portrait too. He is now a patient and does not know what is wrong with him—and he is scared.