Living with Stroke

March 29, 2010

Harvey has found his voice. The stroke almost killed but did not slow him down. The near-death experience seems to have given Harvey a reason for being. Harvey has a great belly laugh. He is endlessly cheerful. Harvey, quite obviously, is glad to be alive. His life’s recital continues. And I want to applaud whenever I speak to him.

To ‘sing’ his way back from devastating brain trauma is nothing short of inspirational. The statistics on stroke are grim. It was obvious when I talked to Harvey that he is a survivor. Do not minimize the guts he has in sticking with it and almost clawing his way back home.

We all have a lot to fear from a stroke, and most of us know little about it including the warning signs. Go ahead. What are they? Here are signals of a stroke in progress; a drop in the mouth, uncontrolled movement in the arms, unintelligible speech.

Harvey’s description of the “Country of Aphasia”, his expression for the inability to pull words from his mouth, is breathtaking. I cannot imagine having thoughts locked in my head with the inability to share them. The brain is an amazing instrument. That Harvey could use the right side of his brain to coax words and full sentences out of the left side is extraordinary. We have so much to learn.

Harvey is disabled, though one would never know it. We cannot see his speech problem. But listen. My voice slurs from the MS. Harvey must have the same awkward problem. He probably ignores it.

But call Harvey at home, and if you miss him, listen to his answering machine. The voice is crystal clear because the message was recorded before the 2006 stroke. He leaves the old message intact, he says, because he cannot bring himself to erase a perfect past.

Harvey has become a full-time advocate for stroke victims with aphasia. He is a new and different person from before. I have been asked if I would trade in my MS. After a pause, I always answer, no. This is who I am, and I have a job to do that is bigger than what I have done. There are no heroes here, no medals or merit badges. There only are people who care deeply, flesh and blood like you and me, individuals who see it all and want to make life better. Helping others offers its own reward.

No one wants to feel different. Chronically ill patients want one thing most: to be normal. Can a person be normal after a debilitating stroke?

Put on a Happy Face

March 23, 2010

Her self-esteem may be cracking, the private, undetected casualty of a debilitating chronic illness. Ann Marie Johnson hurts from her war with multiple sclerosis. But that is for few to know. She wept as she talked to me about her self-doubt, her fears for the future. Ann Marie longs for a husband and children, but believes MS has taken those from her. Often, she is reduced to just getting by.

You would not know it. Usually, Ann Marie puts her best foot forward. That becomes her great defense mechanism. Her sadness stays private as she heads for the glib. “I’m just a young, sexy black chick from Brooklyn,” she laughs. With MS, I add. “With MS, she says a little more seriously.

I wonder aloud if she feels less sexy because of the MS. “At times. Some days, I want to put on special shoes, and I can’t because my hands don’t work or my legs, you know, numbness.” Ann Marie pauses. “And forget about the cute little shirts. I mostly can’t button them.”

The refusal to casually acknowledge difficulties is a quirk we both share. I wonder if it is the fear of appearing weak. Ann Marie just goes on automatic pilot. “You got to just smile and when somebody asks, how is it going, it’s going okay. You just say it.” As if anyone wants to hear the truth.

One problem is that MS, as with other chronic conditions, may not appear obvious to the casual observer. “You can say it’s a rough day. But if you don’t look like it is rough, your honesty can be taken for exaggeration.” Some of us joke about people saying, but you look so good, evidence, much to their relief, that we are not really sick.

Friends and acquaintances do not want us to be sick. They hate the idea, so they minimize everything. “You say the fatigue is kicking up,” Ann Marie says, “and they answer, ‘oh, you’re just tired. Take a nap.’ They don’t understand.” Or want to. I have been legally blind for years, with badly damaged vision from my MS. People ask what is wrong. Bad eyes, I respond. That is good enough for them.

A sick person just knows instinctively who to shield from the truth because they can not handle it. “Sometimes it depends on the audience, maybe family and friends. Sometimes you have to put on a good face and give non-answers. I can put on a really good face.”

I know her game. I have played it myself over the years, never really understanding my own need to outwardly appear so calm and at peace. Neither applies to my true state of mind. We need to appear normal to succeed. Perhaps people believe, hope, really, that we are going to be alright. To appear in control, the fiction goes, keeps us in control. Look the part, and it can come true. And we all live happily ever after.

I think sick people worry about what other people think. We are scared. Is that why so many with chronic illnesses feel the need to put their best foot forward?

Doc Takes a Stand Sitting Down

March 15, 2010

It is tempting sometimes to play victim. My constant combat with MS leads me to the edge of that cliff every so often, but I know if I go over, I will be splattered on the rocks below. Self-esteem, if not personal pride, does not allow me to go there. Life goes on and despite rather pronounced bumps in the road, is good.

Why me? That question you might expect Ryan Martin to ask repeatedly. He does not. What a dangerous question that is. Ryan was shot in the back as a teenager, a bullet he did not deserve. Why not me? It all happens by chance. Somebody has to pay the piper. There are others with equal, if not worse problems than mine, and I do not hear any whining out of them.

Sometimes looking around and taking in another person’s life can feed a valuable coping mechanism. Things always can be worse.

Dr. Ryan Martin took a bullet he had not earned in his back when he was only a teenager. He has been sitting in a wheelchair ever since. That alone is unimaginable. Ryan had the perfect “Why Me?” license. He became a victim candidate. He did not accept.

We all hear people say, oh, I could not cope with that; I could not handle it. We sell ourselves short because we are stronger than we think. You do not know what you can handle until you are tested. Fortunately for many, that day never comes. For the sick and disabled, the test is real. I think most of us pass.

Yes, Ryan’s mother pushed him to work hard and succeed, but Ryan was so young. The pull to play the role of a broken person must have been powerful. Ryan is not the first person whose story I have chronicled who has kept moving forward and found his way across a wide river.

What is so striking about Ryan is how completely he has integrated his disability into his life. He feels normal. Ryan barely thinks his life in a wheelchair separates him from able bodied colleagues. The man is patient with those who insist he must be different. Ryan is at peace with himself, which puts him ahead of others who assume he feels diminished. The man does not.

What is it that rests deep inside a human being, what reservoir of inner strength exists? Some force enables that person by force of will to pull himself or herself out of the deepest holes to pursue a normal and productive life. This man became the first to graduate from Yale medical school in a wheelchair. Ryan stayed at Yale to become a fertility specialist and just was offered a private practice position at the university.

What kind of physician will this man become? Will he be different from all the others? Maybe the tragedy in his own life will make him a kinder doc who relates to his patients with ease. There is an empathy gap in medicine today. Will Ryan Martin fill that void? He just might. Young doctors desperately need role models. They can play that part for each other. The older generation of physicians generally is a disappointment on that score.

Dr. Ryan Martin. I wonder what he thought when he was fifteen, what he could see in the distance. He dreamed and worked to make it happen. Ryan became a doctor to help others. “Life shrinks or expands according to one’s courage,” writer Anais Nin suggested. Dr. Ryan Martin lives that every day.

It is natural to feel cheated by an act of violence that leaves a person in a wheelchair. The calm response seems unnatural. How does a person in Ryan’s position, practicing medicine from a wheelchair, never able to stand over a patient, keep him from being consumed by anger? Instead Ryan was philosophical and calmly found his way into medical school.

Winning Against Cancer

March 8, 2010

We are a nation of cancer phobes. For some of us, the fear of that dreaded disease rests somewhere in the back of our minds. For others, the fantasies never go away and people are jumpy enough to discover a new symptom every day. I had colon cancer twice and never had given the big C. a thought. When the diagnosis comes, instinct takes over. There is no time to ruminate. You have to move quickly.

Some crawl under the bed and assume fetal position. My friend Jon Alter went the other way a few years ago when he was diagnosed with a form of cancer he knew little about. Non-Hodgkin’s lymphoma is more dangerous than plain old, run of the mill lymphoma. Both used to be automatic killers but have morphed into chronic illness status.

These cancers cannot be cured, but there is at least a fifty percent, five year survival rate. Not great, but better than it used to be. Jonathan Alter was diagnosed with non-Hodgkin’s lymphoma in 2004 and lived to write about it in Newsweek, where he is a columnist.

Jonathan is a journalist and it showed when cancer came calling. The man knows how to ask questions and learn what he feels he has to know. All of us need to do that. Too many hang back and do what they are told. Not everybody is as self-assured or a quick study like him.

Jonathan more or less co-directed his care. He made final decisions on the therapies of choice and where in the U.S. he would go for treatment. In short, he took responsibility for charting his course.

The Newsweek editor and columnist did so in consultation with the best specialists around, but he knew he had to be part of the solution. The more patients participate in decision making, the better the outcomes.

Not everyone has the skill or temperament to be so aggressive. Patient passivity is common and very disconcerting. We show more care and do more checking when we purchase consumer items than in choosing our doctors. Apparently cars and TVs are more important to us than our health.

We just throw ourselves into a doctor’s hands and instruct him or her to cure us. No questions asked. Frequently it is a referral, which means we probably do not know the person. Do we shop around? No. One doc tells us to go to another doc, and we obediently do it.

A doctor tells us to jump, and we do not ask why but rather how high? I do not get it. I know a cancer patient in the Midwest who was frustrated because he was offered too many options. He was angry his doctor did not simply tell him what to do.

What is wrong with this picture?

You learn a lot about yourself with a cancer diagnosis. Are you going to dissolve and be mopped off the floor like spilt milk? Rising up and locking horns with the enemy is less a critical tactic for survival.

A patient cannot be dissatisfied with the doctor but sit back and just follow orders.

Perhaps patients hang back passively for a reason. There is a straight-forward question that needs to be answered. Are patients intimidated, even afraid of their doctors?

Patients often don’t know when to speak or not be heard.

Doctors are not necessarily the most approachable people on the planet. Do you think your doctor wants to hear your opinion about what should be done? Add your comments to this discussion in the Chronic Disease & Disability Exchange.

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.