Chronic Illness 101

March 1, 2010

Chronic illnesses suck. They cannot be cured. They can be treated many times, and the sick can live a long time, frequently with a highly compromised quality of life. For the chronically healthy who may not get it or want to, here is what you need to understand the chronic illness experience.

The word to use is “chronicity.” Don’t look for it in any dictionary. It is the creation of Jennifer Jaff who we will interview at a later date. Jennifer lives with both Crohn’s Disease and Gastroparesis, both painful diseases. Jennifer is an expert in chronic illness.

Chronicity is almost a state of suspended animation. We may be in remission now. How long will that last and how bad will we become? We may have a good day, but we wait for the other shoe to drop. I feel there is no stability to my health as I have both Multiple Sclerosis and Colon Cancer.

We need flexibility in our lives, in our jobs and other obligations. But people do not get that and quickly become impatient with us. The system is not meant to accommodate the chronically ill. We exist outside the frame work of how the world works.

The system is set up to handle sick people who get better or die. Lines are pretty clear. The problem here is that none of us gets better and only some of us die. So we find ourselves functioning as square pegs trying to wedge ourselves into round holes. Often it is not a good fit, and we don’t get much help pushing.

Then there is the But you look so good syndrome. Even the most serious chronic conditions can be invisible. Others do not see them, and if you look okay, you must be okay. We live in a culture that worships beauty and physical perfection. People are not comfortable with illnesses or disability. They want us to be healthy.

What is odd about all of this is the staggering numbers of people in this country who live every day with one or two chronic illnesses. Current and credible figures now put the number at about 137 million and growing as we age. That is perilously close to half the population. All of us are touched by a chronic illness. If we do not have one, a member of our family or a friend does. There is no escape, but our eyes are shut tight.

I hold the government responsible for the paucity of serious research on these conditions. The NIH budget is frozen at $29 billion as we spend many multiples of that fighting wars overseas. Toxins and microbes and germs that attack in the night to kill or injure are terrorists by my definition.

And I fault the politicians for allowing the debate on healthcare reform to disintegrate into arguments about numbers without putting a human face on the issue. This is you and me, friends. Chronic illnesses and extended life are what is breaking the system.

Wake up.

The Pain Of Pain, Persistent And Chronic

June 10, 2003

The sharp pain in my right knee has shot me over the falls. I have a new respect for the camel that invented the cumulative burden.

Pain associated with multiple sclerosis — the upper back jolts in cervical disks, joint pain and endless muscle knots and spasms — are a part of life, filed away under “Routine.”

Grinding intestinal pain has receded to the muted timpani of the dull ache, a few years into post-colon-cancer, after-the-ileostomyitis. The grimace is fixed, built onto my face.

This is not the searing pain of the severely injured and dying.

My pain seems trivial in a world with so much suffering. There is another level of hurt, however, a category of relentless, cutting discomfort that does not go away. It prods and nags and insists on reminding a suffering soul that he is being shadowed by an assailant who will not back off.

The line between pain and discomfort can be hazy and hard to discern in the darkness of the difficult moment. Like the hot political border, it can wander, snaking across the landscape to suit the whims of the aggressor.

And the unhappy sensations of sickness are integrated with misery into a life. Somewhere there must be a limit, I tell myself. That point seems far away, if it exists at all.

And now, it is my knee. That silly little body part, designed to carry its own weight, is leaning on me.

It hurts, and I am saying enough. No one is listening. This pain is piercing, when walking up or down stairs, even stepping onto or off a curb. And it does not abate.

On bad days, even strides on the steady surface bring on the sting.

There is no consensus on the identity of the culprit. My neurologist and I blame stress from years of an eccentric walk caused by multiple sclerosis.

My orthopedist and physical therapist seem more inclined to charge a troubled tendon in the knee itself with the crime.

I see a hung jury and lose confidence that justice will be done.

I do not like whiners, and this low moan is sounded self-consciously and only to make a point. When pain rides shotgun, illness cannot be driven from the conscious mind.

Pain, however low-grade, adds up. The continuum of discomfort can be an unrelenting, constant companion. Hey, try not to think about this, Jack: put it out of your mind.

The challenge for anyone with lingering, chronic problems is the need to resist allowing the condition to take over and define a life.

I have spent too many years insisting that I am not the sum of my physical ills for me to look in the mirror now and see sickness staring back. That option is no option at all.

It is disconcerting to acknowledge, even to myself, how much my waking mind is filled by the limitations of illness kept on the front burner by the physical hurt.

Crises of health are hard enough to leave behind in the dust. Chronic illness brings signature problems that make day-to-day life a gantlet.

Pain magnifies difficulties, resurrecting and re-enforcing pessimism. Cumulative pain dims the spirit, a bit at a time.

I want to say I am inured to the pain. I am not.

When pain becomes discomfort, for however long that lasts, the pattern is to forget the bad instantly.

Memory is convenient. Troubled feelings are set aside, never ignored, but put somewhere toward the rear of the stove. And then the pain comes to the kitchen door again.

Pain breeds anger. I have had too much of that in my life.

There is a discipline for dealing with this menace that comes and goes. Mind games help. Thinking about what is right in my life and imagining a better day work to a point. I scoff at the power of positive thinking except that there is an element of wisdom hidden there.

Mostly, I tell myself that I do not hurt so much that sensation should get in the way.

I sit at a teacher conference or during dinner with friends, and I smile. Why shouldn’t I? These are good times. Perspective, please.

I have lost friends to painful cancers. I am not going anywhere.

Diseases That Stay Out of Sight

December 10, 2002

Clean at last. The third colonoscopy was a charm. Two bouts of colon cancer have ended, the curtain fallen. The houselights are up. Nobody has noticed that I am still on stage. A chronic illness remains. Multiple sclerosis, my longtime companion, has resumed its lowly position in the hierarchy of suffering.

Chronic illness is driven from the stage by the acute threat. Its plotline is tedious because action is slow and the story rarely varies. Attention spans are short, and the drama can take years to play out. The brush with the white hot health crisis puts the chronic condition in its place. When recovery from a life-threatening illness comes, that tired old standby remains.

Turning tragedy to comedy is one option for coping. The morning I tried to walk through a large mirror, thinking it was an entrance to a dining room, entertained the boys behind the bakery counter. They knew nothing of my legal blindness. I could write a guide to women’s bathrooms I have accidentally visited. Creeping, crawling illness takes me to the theater of the absurd. Belly laughs sustain me.

There is a plodding quality to the slower struggle, one that frequently lasts a lifetime. Chronic illness becomes prosaic, made clear by the contrast with more exciting cancer, which wins in the ratings every time. Cancer brings a sick glamour to its victim.

Cancer survivors, and I am one, are wrapped in a cloak of tinsel that wears thin soon enough. Life-threatening cancer tends to resolve itself. The chronic condition is a journey without end. Many cancers today are treatable and become chronic more than killer conditions, to be managed and endured and survived.

Orphan afflictions become the long haul. They have little cachet but afflict the many. These diseases are boring, not the stuff of movies and plays, so usually they must rest outside the culture. Actresses succumb to unidentified cancers regularly. The Big C is a proved box office winner. Remember the last hot big-budget film about a man with crippling arthritis or a woman with excruciating shingles? I don’t.

One president endures M.S. in prime time and we learn little about the disease. Talk of his shredding brain and a presidential blackout do not ring true. No matter. M.S. is but a television device, meant to entertain. And a public does not understand or appreciate the pace or pain of slow sickness.

Many diseases compromise the ability to eat and digest, to walk and speak and a host of other functions. These conditions remain private because most of us tire of talking, and no one can see the truth of another person’s life.

My friend Don Gibson, a senior executive at the National Endowment for the Humanities, left his job because of a digestive tract ailment, Crohn’s disease. Later, his open heart surgery became the front page story to friends and acquaintances. No one has bothered to pay much attention to the Crohn’s, and everyone is quick to jump to conclusions. “It goes one of two ways,” Don says. “If you appear weak, people think you are useless. If you are functioning, they think nothing is wrong.” Neither is the case.

“If more of us died,” says my pal Susan Thomases, who also has M.S., “people might sit up and take notice.” Susan, a lawyer and political strategist, gave up a career in the law because of complications of M.S. “The disease is slowly stealing from me. You know. We just live with it.”

That, we do. We are left to battle insurance companies that resist the steady costs of endless care and the employers who quickly tire of our bad days. We are compromised. We do not want to be wretched refuse. We do not demand the concern of others. Benign neglect would be just fine. We become a hidden population. We are invisible, except to our bosses and colleagues and others we engage. Folks do not want to know. Those who love us do but cannot intercede.

I have trouble walking. Don can barely eat. Susan has memory problems. We will live another day, but the routines that others take for granted will challenge and occasionally conquer us. We can only acknowledge our difficult journeys to ourselves in a whisper and move forward with humor and grace.

My Body, My Prison, My Dreams

May 28, 2002

The warm breeze embraced me as I left earth on that shining morning. I ran down a gentle hill, legs stretched forward, my arms extended out as wings. I soared in perfect flight.

Lifted gracefully above a flowered hill, my body was strong, my vision flawless, and I could see forever.

I waved to a farmer below as I gained altitude without effort. The grace of elegant motion was mine, and I was accepted into the billowy clouds.

Suddenly awake in the predawn chill, I stumbled on imperfect legs to a desk to record every detail of my glorious dream. Patting the surface, palms stretched wide, I searched madly for my thick glasses so I could try to read my own writing. Eyes that barely see and limbs that function imperfectly had made my improbable flight a magnificent metaphor for my search for physical power and that elusive grace.

A diminished man lives upstairs at my house. Multiple sclerosis and colon cancer have taken their toll on my body.

My psyche was not far behind. The battle for the body inevitably spreads to the mind. Hanging on to self-esteem becomes the endless struggle of the sick. Skirmishes are fought with invading cancer cells and myelin sheaths that peel from motor and sensory nerves, but another conflict rages in my head.

My old swagger, my boundless self-confidence are missing, and I want them returned to me.

The world was mine, once, and I traveled it widely, covering news for television. The lens was true, the focus sharp. Now I am gone from the business, and the shot threatens to fade to darkness.

Producers produce and are tough and independent, expected to jump from airplanes without parachutes and hit the ground running. I was young and foolish enough to do just that. My world is smaller now, as am I. My camera is turned inward, and I do not feel good about what I see.

I am a creature of a limited life, a man who cannot see clearly or walk strongly and, so, cannot participate in all too many of life’s pleasures.

I no longer compete in the marketplace, and my relationship with my family has been altered.

The pursuit of self-esteem is a dangerous journey across emotional minefields. Coming to grips with who I am means redefining myself by highly personal and subjective standards.

Finding my way is measured by the distance between once realistic expectations and cold reality.

The long march is reflected in the eyes of my children, the arms of my wife. I am not in this alone. Loved ones map my life because our journey is together.

Objectives are no clearer than feeling better about myself tomorrow than I do today and seeing that level of comfort mirrored in those who matter the most. We make it up as we go along.

My children know what I can no longer do. When I throw a ball with Ben or Gabe, the ball is slowly rolled back on the ground, where it can be seen. My weak right arm tosses endless wild pitches that are forgiven and retrieved in good humor.

The kids never bother asking me to bat.

What tears at me is that I must appear to be so flawed in their eyes. What matters to them is that we are playing ball in the backyard at all.

“Let’s go to a movie,” Lily suggests. “We can take a cab,” she adds in her upbeat way before I can remind her that I no longer drive. I am forever strapped into a passenger seat, riding shotgun as another holds the reins.

The shortest errands are not mine to run, a never-ending burden for my wife. I cannot stop feeling the child.

Dependence is dreadful for me, though only a routine for the others. To feel weak is to become vulnerable and feel bad.

What defines a diminished person?

Kicking a ball and pushing pedal to metal seem too trivial to make a satisfying life.

I want to believe that teaching my children about history and music, acting as role model and showing grace and humor in the face of adversity mean more than driving a car.

Being a good person must carry more gravitas than the ability to run, jump and play.

When my children are grown, what will they remember about living with me?

I worry that memory will focus on the diminished man I think I see staring out from the mirror.

I hope not.

Perhaps my children will forget to remember what I cannot put behind me. What I could not do may not have the staying power of what I did.

Those who love us do see past the problems. Who we really are stands not in our sneakers but in our souls.

When Cancer Pain Is More Than Pain

April 9, 2002

The morning the pancake fell to the floor and I hit the ceiling, the spatula was launched as a missile, glancing off the kitchen window and demonstrating once again that my anger can fly out of control at petty annoyance.

Decades of battling multiple sclerosis had failed to produce the fail-safe system to short-circuit high emotion. Flawed eyes and faulty limbs had conspired on this day, and combustion was spontaneous. The fire can be contained, but the spark does not die.

M.S. has become a known quantity, and my equanimity usually remains intact. The kids try to ignore the occasional eruptions, and the family seems to judge itself happy. There are the predictable battles of three children sharing two parents and the one objective of disrupting the peace whenever possible. But the calm was shattered for real when cancer came calling, joining M.S. as the predators loose in the house.

Life changed even more when Dad returned shortly after Thanksgiving Day more than a year ago, after his second prizefight with colon cancer. The old man was knocked around badly, and he was bruised and bloody when he came back from the hospital. I was in pain and decorated with a bag on my belly. The chill of late autumn had moved indoors.

Gray skies broke out each morning. Bringing the emotion home from the wars was a stealth operation. The anger swept in beneath the radar and crawled into bed under the cover of my darkness. My life was not supposed to have gone this way, and fear for the future was burning me up.

Cancer and M.S. had not been good companions. My colon was reacting strangely to surgery, possibly related to my autoimmune problems. The trauma of the operation had jump-started the multiple sclerosis. I could barely stand or walk. My legs were swollen to watermelon proportions. And I had to contend with the bag for three months. I thought that I was calm. Right.

My head was down, and I was not seeing the people around me. I had assumed that the children would rejoice in my presence. They shrank in horror. My fangs were bared, and they were sharp.

“Do your homework, turn off the music!” I snarled. “Clean up that mess! Don’t leave it for your mother and me.”

I sat sullenly and stared, checking my watch in the evening so I could order them to bed at precisely the appointed hour.

I was trapped in my own despair, uncomfortable and uncertain that I would mend. Self-absorption became a byproduct of illness. Bringing the furies to heal was impossible, because their presence went unnoticed. My oblivion was complete, my psychotic behavior obvious to all but me. Deep inside, I hid, cut off from family and friends. I left the cave only when summoned.

Finally, my wife had enough and sat me down. “You are becoming a monster,” she warned, kindly adjusting her remarks to the present tense.

My stare was blank. My emotional equilibrium is fine, I thought. What is she talking about?

Neither the warning nor the fact that my children walked around me dented the armor. When the ileostomy was reversed, my rectum, the bottom of the colon, kept closing, and the painful problems multiplied. I was now officially impossible to be around.

“Open your eyes, Richard,” my wife pleaded. “Don’t do this to your children. You are not in this alone.”

I knew she was right. The beast had me by the neck. Escape was not easy. Anger is hard to legislate. The fires keep burning, the flames rising up regularly. Getting a grip became a long haul.

I decided to talk to the children. We set the event as an interview. “Ben, you are 13,” I said quietly. “You can tell me the truth. Have I been hard to live with?”

Ben smiled suspiciously and sat, just staring at me. “Do you really want the truth?” he asked.

I nodded, and the floodgates opened. “You were really mean,” he began, pleased to unload and picking up steam. “I wanted to scream in your face and kick you. But Mom told me to cut you some slack.”

The smile on my face was gone. These were sobering statements. Gabe saw my blood flowing under the door and came in with his two cents. “It sounded like you really hate us,” he said.

Lily, my daughter, wagged her finger in silence.

Pure pain had been dumped at my feet. Words would not come. A changed landscape would require more than words, anyway. The epiphany hit hard. I had been so self-absorbed, and there was a lot more to think about than me. The patients do not lie alone in hospital beds. Our families are next to us, whether we see them or not.

The infection I brought home is under control, though the fever is not gone. Work around the house has taken on new meaning.

Trouble With “The Bag” Is in the Head

February 27, 2001

The fog was lifting, and my wife’s voice echoed thinly across the recovery room. “The surgery was successful,” she said. “The operation lasted over six hours.”

I cut to the chase. “Did they do an ileostomy?”

She paused. “Yes. It will be temporary.”

She now tells me I was crestfallen. I was too drugged up to recall with clarity, but certainly it was a worst-fear-realized moment. This would mean the bag. The Bag. Everyone understands what that means.

It was just below my ribs. Even with clothes on, I felt naked. I saw the bulge as blinking neon. It became my scarlet letter. When talking to friends, the question always came: Do you have the bag? The tone betrayed a common horror at the very idea. It was not just this 52-year-old journalist. It was everyone.

An ileostomy comes out of the ileum, which is the bottom of the small intestine, just above the colon. A colostomy, the more common procedure, comes out of the body farther down, emerging from the large intestine. My ileostomy carried waste from my intestine straight into this bag. The device was there to allow my colon, the site of the cancer surgery, to heal properly.

I had ruefully told a friend only weeks earlier that when I awoke from surgery, I would not ask if I was going to live. Instead, I would just inquire if I had the bag. My interest in the life and death issue, I said, depended on the answer to the first question.

Now I had my answer, a tube of flesh protruding from my belly. The surgeon had simply cut my small intestine and left the top hanging out when he sewed me up from the surgery. An appliance fit snugly over it.

The cancer now took a back seat in my head. I had bigger fish to fry. This doctor said this new arrangement would last only three months. Right. My medical history was too full of surprises to assume anything.

Eleven days later, after only a quick lesson in managing the ileostomy, I was released in the custody of my wife, who confidently predicted we would tame this beast. I wasn’t so sure.

Emptying the bag was to dominate my anxieties for a while.

“Just sit on the back of the toilet seat,” a nurse had instructed, “and lean forward and down.” I missed only once. I had been told I could shower, that the bag was sealed tight and waterproof when the clip was attached. I was too weak from the surgery to test that theory for a while.

But I did stand naked and very still in the bathroom to stare into the mirror. I was shocked. The bag just hung there. It seemed big. Clearly the battleground would not be the bag but my head.

I felt claustrophobic and carefully avoided mirrors after that.

The temporary ileostomy is a good procedure. Life after surgery can carry on almost normally while the colon heals, but immediately I felt diminished, and almost emasculated. A man should not be hanging this purse at his waist. A rabbit pelt from a leather belt, perhaps. Next to his hunting knife. A sissy pouch for transporting that which everyone else turns a back to? Never.

As for a sense of my own sexuality, forget it. I instantly became asexual.

There is no human walking the earth who does not share this function of the body. Yet we seem to regard it with shame. I was sentenced to see, indeed to stare, at what my body was producing. I wondered why this plastic bag had to be transparent. This seems a cruelty, as if our faces must be rubbed in our bad behavior, like pushing a dog’s nose into his overnight misconduct.

Perhaps my vulnerability forced this narcissistic response. I was uncharacteristically obsessed with my own body, reacting foolishly, I knew. This was crazy.

A temporary ileostomy seems a small price to pay for status as a cancer survivor. Many are less fortunate than I and do not survive, or they wear their dreaded bags for the rest of their lives.

Yet self-esteem is a potent concern for anyone, and emotion cannot be denied. I suspect that by necessity, my adjustment would have been healthier if I knew the bag was to be permanent.

Questions and comments from friends have revealed ignorance and discomfort. I have gone out of my way to be open and honest about my plumbing. That has been part of my therapy.

“Where does the urine go?” some would ask. “It’s the toilet, stupid,” I responded. That does not change with this surgery. People do not really want to know about this subject. It remains taboo. Perhaps they want to hear just a little, then block their ears and run.

Colon cancer is the most common reason for the bag, though diverticulitis and other inflammatory and hereditary bowel diseases create the same need. The numbers are increasing. The bags are everywhere. There is nowhere to hide. Colon cancer screening remains the most effective weapon against this self-proclaimed indignity.

My plumbing party was held at a local hospital this month. My intestines are back in my body.

I celebrate my return to anatomical normalcy, mindful that my emotional response may have been less than normal. Still, I am pleased to have put my plumbing behind me.

M.S./Cancer Combo No. 13 And the Coping Mind Game

November 14, 2000

“The CT scan shows a spot on your liver.”

It was a stunning announcement from a surgeon walking me through the plan for dealing with a different situation, the colon cancer that had returned after less than a year. My heart was now sharing shoes with my feet.

“I don’t think it is related,” he went on.

I couldn’t hear him anymore. There was too much noise in my head.

The doctor had spoken reassuringly of his doubts about possible liver involvement, but he did order up a PET scan. PET stands for positron emission tomography, though it sounds like a machine the vet throws your dog into on occasion.

Days later, in the subbasement of the hospital and after an IV dose of radioactive glucose and 90 minutes in a high tech tube with Mozart in perfect stereo behind me, I was calmed. My liver was clean.

And the caravan moved on. The brief prospect of cancer of the liver had brought my second bout with colon cancer into sharp focus.

The first colon cancer had put my many years of struggle with multiple sclerosis into perspective. A coping device had been born and reborn.

Coping is a mind game. It pits perceptions of self against a highly subjective view of the problem and attendant limitations.

One’s fate can often be worse. I seem occasionally to lose sight of that. These crises come from nowhere, and they occur arbitrarily. There is frequently little warning. One moment, Cousin Bob is sweetly emotional and gets a lump in his throat and the next thing you know, the lump is malignant.

A critical element of coping for me is to acknowledge these crazy truths to myself, over and over again, as many times as it takes. The M.S. and Cancer Combo (No. 13 on the menu) proves that life is not fair. I think we know that.

Fairness cannot be seen as an issue with sickness and health. Too often, the cry that life is not fair goes up in a moment of crisis and high emotion, as if life and death are negotiable and some force in the universe will respond to reason. Get a life, as my children would say.

When shocking news about health lands on our shoulders, I believe we react viscerally and almost instinctively. Emotional responses are a product of who we are on a very basic level.

I think that without even realizing what we are doing, we quickly decide whether to be victims. Winner and loser are self-determined designations we will carry eternally. These labels become our badges to identify us to ourselves and to the world. Such powerful self-definition deserves to be well reasoned.

And so, we cope. Coping begins instantly with bad news and lasts a lifetime. That process may dominate our conscious thoughts and creep into our marvelous journeys into the night.

Awake or asleep, in my thoughts and in my dreams, I know I am working at coming to grips with my life, and I am increasingly able to keep track of my emotional baggage. Dealing with disease is about survival, not about heroes.

There are no medals or merit badges handed out for remaining upright and moving forward with grace. We all cope with life, but coping with illness is an aspiration that cannot be fulfilled with perfection.

Coping is not a precise science but an exercise in doing what can be accomplished. Coping is not glamorous and not an exciting spectator sport. Coping is prosaic, like watching grass grow. Coping is what gets you through the night.

I cope. You cope. He, she, it copes. Conjugating life seems routine, though it separates the strong from those who insist they are weak.

My wife and I cope for ourselves first, for the children after that. These steps are similar to standard airline procedure.

First, don your oxygen masks, then assist the children who cannot go it alone. Coping is difficult, even painful at times. I have managed to face who I really am, as opposed to who I might have wished I could be. Blame disappointment on the illness. Right. Blame it on the bossa nova.

People do not cope with equal skill and efficiency. For me, coping has become an essential survival mechanism, almost a way of life. It is my basis for being and doing. I recognize and acknowledge my frailties and significant limitations. I have trouble walking and using my right arm and hand. Legal blindness has stolen my driver’s license from me. I have learned to request and accept help. I could not always do that. This does not come naturally, and sometimes I fight it.

Coping is constant. I keep close watch on myself. I did not choose to develop the skills I associate with coping. I only chose not to be a victim. Coping was self-taught or, perhaps, only self-learned. Webster merely states that to cope means to struggle to overcome problems or difficulties.

My diagnosis of multiple sclerosis fell on the tender ears of a 25-year-old journalist who was too naive to know what might be down the road, too ambitious and impatient to take the time to find out. I simply decided not to react and careened into a state of steep denial.

I have become a student of denial. I instinctively ignored advice to get out of the television news business to seek less stressful work. I traveled the world, covering wars in the Middle East and Central America and politics at home because I denied the idea that I could not. Yet, I am criticized and charged with the vague crime of refusing to face my illness.

Excuse me? The lesson here seems to be that things must be bad if they seem too good. My neurologist once turned to a medical student and labeled me a denier. I wanted to throttle him. Even those who should know better seem to need to see the sick as less than they are. Are they projecting their own fears?

I view denial as a positive and productive coping device. What I am denying is not internal reality as does the child, but the external perception that I am so compromised that I no longer can do.

Denial can create wonderful self-fulfilling prophecies. I see myself as strong and offer family and friends permission to view me as such and not to become mired in my troubles. For me that perception then becomes functional truth. I argue that I do not need help and, in fact, then require less assistance.

This is a recipe that calls for a pinch of strength and healthy self-delusion. Determination and denial may seem a contradiction in terms, but they combine effectively to keep the momentum of living intact.

My wife, Meredith Vieira, frequently urges me to face my emotions, though what those emotions might be is not clear.

Self-pity is out. “Poor me” never flew in my family. My father made that clear long ago. My old man is a retired physician and also suffers from M.S. He says you just keep going, one day at a time. I think coping is two-thirds discipline. Self-indulgent emotion brings nothing to the party. The resolve to succeed does.

This morning, I will be doing business at the hospital.

When I awake from the day’s deep sleep, I will find out how much of me has been taken and try to reassure myself that plenty remains. M.S. and colon cancer, cane or colostomy, who I am is in my head. That is my identity. I will be fine.

A Body With a Mind of Its Own

June 25, 2000

The diagnosis came with a perfunctory phone call. There was no mention of treatment, no helpful advice. I could feel the neurologist’s shrug through the wire. I sat alone and in silence. I was only 25, and did not know what to do.

All these years later, I’m still not sure what to do, except to live my life. No neurologist I’ve come across has much to offer, beyond a few new drugs. I reach out, but with nothing to touch.

Whatever my difficulties, I know I am fortunate. Some people with multiple sclerosis, a degenerative disease of the central nervous system, are confined to wheelchairs or to their beds, unable to fend for themselves. I move slowly, hobble a bit and sometimes stumble and fall in the street, but at least I can walk. I try to remain upbeat; my neurologist once accused me of living in denial, but I denied it.

Still, there is much I cannot do. I no longer drive. I have to cede control and admit dependency. I lean on others regularly, and I hate it. Days are arduous, small tasks difficult. I take five minutes to button a shirt, five more to tie a necktie. And I can barely stay awake to go out in the evening. The betting at dinner parties these days is whether I will drop and drown in my coffee.

For me, living with M.S. is all about navigating an obstacle course. Crossing the street when I cannot see the other side, finding an address when I cannot read numbers at any distance, climbing stairs with feet that drag. Shooting baskets with my kids when my right arm has no strength.

And mine is a mind game, a matter of maintaining emotional equilibrium and holding onto optimism. Self-esteem suffers with the inability to perform simple tasks. I just cannot get used to admitting that I am unable to do something.

Cognitive problems are on the increase. My confusion with a child’s homework can be humiliating; I know the kids prefer now to do math and spelling with their mom. The black holes where there were once specific words and thoughts make up a map of frustration and anger. Why is this so difficult? What was I thinking? These questions come with greater frequency.

Ambiguity and uncertainty are parts of life, of course, and I have learned to live with them. But not every worry is so manageable. I am the third generation in my family to stumble and fall with multiple sclerosis.

What about my children?

It’s Invasive, It’s Unpleasant And It Can Save Your Life

March 14, 2000

“It’s time. You’re over 50,” my internist said casually during my routine physical in November.

“I’m sure you don’t want to hear this, but you really should have a colonoscopy. Is there colon cancer in your family?”

“Actually, there was,” I answered. “My maternal grandmother had it late in life.”
“Then this is no longer elective,” he added decisively. “You have to do it.”

Great. Another invasive procedure. I already had multiple sclerosis, with my share of ordeals by procedure, steroid injections under my eyes and catheters snaked through arteries from my groin to my brain. I didn’t particularly want to participate in this next adventure. I just wanted to be indemnified against another disease.

So now it would be the tush test. A television camera inserted into my rectum. The closer I came to the appointed hour with the gastroenterologist, the more I realized my utter horror was increasing and was out of proportion. What’s wrong with this picture?

Colonoscopies save lives. They can detect colorectal cancer early. Most malignancies in the colon begin as benign polyps. Only one in four people will have a polyp, which can be removed painlessly during the procedure before it ever becomes malignant. The only colonoscopy with an uncertain outcome is the first. There is no way to know in that situation what is growing and how long it has festered before being discovered.

My story, precisely. A polyp was removed and no one thought much of it. Over 90 percent are benign. It was biopsied, and I learned I had a malignancy. It took four hours of surgery and a resected colon, but soon enough the cancer was gone.

I was left with a sore lower back from the incision and a powerful sense of how lucky I was. The cancer was found early. The colonoscopy had saved my life. I realized, though, how close I had come to postponing, if not altogether ignoring my internist’s advice.

During the pre-op work-up, I had asked my 69-year-old internist with the unequivocal advice when he had last subjected himself to the dreaded procedure.

“I’ve never had one,” he muttered.

“Why?” I asked, not even trying to mask my incredulity.

“Stupidity. Denial,” he admitted. “I want to be a doctor, not a patient.” Then, he added, “I’m going to get one next month.”


Never has a single procedure, a test that can save lives been greeted by more resistance, indeed repulsion. Colon cancer is the second leading cancer killer in America. Contrary to popular belief, it hits both genders as an equal opportunity killer. Undergoing a colonoscopy every five years, three, if there is a family history, is practically a fail-safe guarantee against the disease. Yet many people don’t want any part of the procedure.

“It’s a shame. People don’t know what colonoscopies are about today,” said Dr. Blair Lewis, a gastroenterologist at Mount Sinai. “They’ve changed. It’s not like the old sigmoidoscopies, which were blunt instruments examining the lower colon. People don’t understand that today the instrument is flexible and the whole thing is painless.”

It is painless. I know that now. A cocktail of sedatives takes the edge off the discomfort, which is more in our heads than in our rumps anyway. There are no pain receptors in the colon, and you can watch the event progress on a television monitor at no extra charge. The pictures seemed almost impressionist, very color intensive to me. Maybe it was the drugs. Only slight abdominal pressure registered, but the truth is, our phobias are all about the instant of entry, the long anticipated, awful anal invasion that makes grown men cringe.

Face it. Guys are wimps. Women are used to routine medical invasion. Alas, it is their lot in life. By the time a woman hits 50 and heads for the doctor, earlier if there is a family history, she has been probed and prodded in every orifice. Women who have borne children should laugh at such male distress. When Colonoscopy Claus comes down the chimney, women may not jingle bells, but they seem to sigh and embrace him.

“I just did it.” says Neen Hunt, executive director of the Lasker Foundation, which supports medical research. “My mother died of colon cancer, and I had my first colonoscopy when I was 40. I’m now 57, and I’ve had a few more. It’s too important to my family not to do it.”

My mother, Terry Cohen, a retired registered nurse and staff instructor, has had three colonoscopies and a few sigmoidoscopies before that. “I didn’t have any particular anxieties about them. I wasn’t happy, but I just did it. As a woman, I’ve been through worse than that. I was just concerned about the outcome.”

Her outcome was just fine, but that doesn’t seem to be what is on the minds of men. Jim Hightower, former agriculture commissioner of Texas and author of “If the Gods Had Meant Us To Vote, They Would Have Given Us Candidates” (HarperCollins), stopped by for lunch recently. I talk about this stuff with everyone these days.

Jim is 57 and has yet to undergo the procedure. “My father died of colon cancer,” he said, shaking his head. “I know I should have one.”

With colon cancer in the family, any person’s risk of acquiring the disease doubles by age 40. For those people, resisting colon cancer screening is playing Russian roulette. Jim claims he watches his diet and eats fiber regularly and, yes, is going to get a colonoscopy. “I’m going to do it. I just haven’t gotten there yet.”


The most common method of colon cancer screening is flexible sigmoidoscopy because it is now covered by Medicare. It is not adequate in more than 50 percent of the applications, though, because it does not reach the upper colon. So, colonoscopy remains the probe of choice. The modern, flexible sigmoidoscopy is less intrusive, but still there is resistance. The American College of Gastroenterologists runs a never-ending advertising campaign with the warning, “People will die of embarrassment.” Beyond embarrassment, the mere thought of these procedures touches on a common fear of invasion with many men.

“Fear of the procedures and the failure of doctors to adequately explain them are the problem,” explains Dr. Philip Schoenfeld, director of gastroenterology research at the National Naval Medical Center in Bethesda, Md. Personally, I think it is the failure of Americans to just grow up. While there are no firm numbers, researchers estimate that only about 15 percent of people over 50 get colonoscopies.

Look. These tush tests stink. You have to drink hemlock and pour your guts out in preparation for the blessed event. It is sort of like the morning after going to a bad ethnic restaurant. But clean intestines are happy intestines.

Insurance hassles never end, if you are lucky enough to be insured at all. Carriers go out of their way to cut costs, of course, and they can make screening colonoscopies almost impossible to obtain. Usually, the procedure is covered only when there is cause. But the bottom line, so-to-speak, is that these procedures are just not fun.

Whoever said that fighting cancer should be fun?

After the Fall

April 11, 1993

He tumbled into that narrow space like a shiny penny disappearing into his new ceramic piggy bank. It was a slow-motion movie sequence, and I was powerless to stop it. A quick glance up at me, devoid of all expression, and he vanished. Our careful choreography had gone awry. Parent instinctively trying to watch over child. That grown-up caution that guides the movements of a little boy, not yet 4, had broken down. Failed. People always say, when it happens, it is sudden. It was.

The train ride was to be a small reward for a large rash he was withstanding and learning to ignore. More than I can say for his parents. We had driven into the city to consult with the dreaded doctor. That called for some token goodie, more than lunch at “Old McDonald’s” could provide. A train ride was as good as it got, at least as far as Ben was concerned. So why not?

Truffaut’s film “Small Change” long ago had gently placed the idea of quirky and unpredictable childhood crises into a little wrinkle of my consciousness. How could life be so fragile and children so durable in the same moment? I didn’t have children of my own then. I could not even imagine it. But the horror of that child in the movie plunging out of a 10-story window reaches inside and tears, though in the movie the baby laughs with delight and crawls on.

The sky was bright this Saturday, and when we got out of the car at Marble Hill, on Manhattan’s northern tip, and yelled “Bye, Mom” and “See you at Ardsley,” we headed down the steep stairway to a platform on the river. Ben’s Blue Train would be along shortly. Trains are Ben’s passion. Thomas the Train, the Red Train (Amtrak), the Blue Train (Metro-North). They speak to him. They are childhood’s friends, benign and exciting. Their engines huff and puff across the countryside and tell him wondrous tales in his bed at night. Our train pulled in and sat motionless, poised to head up the Hudson.

We held hands, especially there, because of the dangerous, wide gap between platform and train. The physical contact felt good. Ben needs me too, I always think, when he reaches for me. I am so acutely aware of his magnetic link to his mother. We jumped onto the train and then, as others came and went, Ben suddenly looked back at the platform and yelped: “Look, Dad. Your CNN card.”

My work ID was lying on the platform by the open door. It surprised me, and I quickly told Ben to stay where he was while I fetched it. In an instant I was on the platform, only a long step from the doors, bent over and recovering my card. When I heard Ben yell, “Let me help,” my hand shot up instinctively in the universal language of, “No.”

It’s truly a blur now, but I think I did it. I didn’t know he had jumped to follow, and I think it was my extended arm that knocked him back and down the slot into the toaster. It took a moment to register that Ben was down. Squeezed in between platform and train, thousands of tons of huffing, wheezing steel, ready to roar on. No longer benign, it was a metal monster about to eat my son.

I have covered bloody conflict from Lebanon to El Salvador, and I have never known the razor-sharp terror like that uncertain moment when a little person, your little person, is in mortal danger and you don’t know what to do.

The lesson of the Beirut rooftop comes clear: Do something. The hiss of a rocket-propelled grenade, and anyone who hears it has about two seconds to act. Just do something. Anything.

I pleaded with startled travelers not to let the doors close. Trains with open doors don’t move. People were horrified and motionless. Mannequins. I guess no one knew what to do.

“My God,” I quickly wondered, “where is the third rail, humming with electricity?” The toaster with a knife sticking out.

“Ben, don’t move,” I yelled, as my eyes adjusted to the darkness down there and I saw him half-prostrate in front of a wheel twice his size. He was trying to get to his feet.

“Put your hands in the air. High. As high as you can!” Two little tightly clenched fists appear below the level of the platform. I drop to my belly and scoop up the dazed child I have knocked down there in the first place. No hero. Just the survivors of a self-inflicted wound.

The nightmares have started now. In two beds. It was all probably less threatening than what the mind’s eye captured that afternoon. What might have happened. The videotape in my head plays and replays the hideous possibilities: the disaster that might have been. The same fall on an empty platform with no help. The fruitless scream and a Blue Train in a hurry to make up for its chronic tardiness. It could have happened across the platform where the third rail runs under people’s feet as they get on and off the train.

It’s hard to know what is in Ben’s head. He’s not saying much, though at least he is not accusing me of trying to do him in.

“Tell me about the tracks,” he says when he wakes in the mornings. And before he goes to sleep. He has his videotape, too, but he does not seem to be sure what the images say to him.

“Leave your wallet home. Please,” he beseeches. “You won’t lose your card when you go to New York City.”

Ben also suggests from time to time that he is too young to take the Blue Train for a while. And he tells his mother the Blue Train is crying because of what happened that afternoon.

Fathers have enough trouble convincing themselves, never mind moms, that we are competent guardians for the children, even when we are only out on a summer expedition. She didn’t blame me for the accident, but I wonder what she really thought. I knew that it was my fault. The chasm was wide, the fall quick, but I let it happen. My tears just weren’t good enough.

I won’t stop thinking about this for a long time. I hope Ben does.

In war, your number is up when it’s up. Even at home, on the battlefield that matters, our hold on life is fragile. Sometimes we get only one mistake. Our children can only look up at us. The trust in the eyes of a child is overpowering. Especially when you know you have failed once and been given a second chance.