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Bellyaches and Belly Laughs

March 24, 2012

My gut has ached most days for lo, these many years since run-ins with colon cancer forced me off the road and into a ditch.  Most days bring a menu of pain and discomfort.  The baby is kicking, I grouse to my wife.  She sort of smiles and gets the message.  It all began with the operation I can never forget.

I lay dozing in my hospital bed when surgeons put down their weapons, more tubes snaking out of me than in a broken down sink.  The seven-hour surgery had left me in throbbing pain.   Cancer and multiple sclerosis did not prove to be great bedfellows, and the body in the bed seemed to be on strike.

The situation was absurd.  It was like getting hit by an airplane.  I wanted to laugh, maybe because I was too old to cry.  Instinct told me humor only could help.  I lay there, waiting for the dreaded moment when some sadistic nurse would pull off the covers and throw me out of my cocoon to begin the painful process of walking.  I ached in anticipation.  My sense of humor was speeding south when my wife appeared.

Meredith sauntered into the hospital room and ignoring the crowd of people in white, casually mentioned that she had just returned the dress.  What dress? I asked with little interest in whatever she was talking about.  “That cute little black dress,” she answered.  “The doctor said you are going to make it.”  Meredith paused.  “I would have looked so cute crying hysterically in that outfit.”

I had to laugh.  Through years of sickness, that little black number has been a topic of conversation whenever times are tough.  The flimsy garment also has become a reminder that things always can be worse.

Meredith’s threats that she really is going to buy that dress have defused stressful moments through the years.  There have been many.  The lesson has not been lost.  Laughter beats drugs, is better for you and is a lot cheaper.

Years later, chemotherapy was ravaging my body.  I was on a monthly regimen of that toxic treatment as an experimental therapy for the MS.  My hair turned white and fell out in clumps.  The weight loss was frightening, the experience hell.

How do I look, I would ask my beautiful wife.  Why don’t you put on that little black dress, and let’s go dancing.  I was quivering, weak kneed and shaking like a man locked in the freezer.  Friends would point out the hair loss, as if doing me a favor.  It’s a toupee, I would answer.  Drop the subject.

I fall and swear up a storm.  It happens too often. Then I crawl across the floor in search of a counter or heavy chair to lean against as I struggle to straighten my legs and slowly pull myself up with whatever upper body strength I can muster.  Gabe shows up, home from school.

“What are you doing down there?” he asks, betraying no alarm.  What are you doing up there? I respond.  “Just seeing what you are doing down there,” he answers as he wanders away.  He has seen this before.  I’m just looking for something, I throw in.  Gabe knows the signals.  I am okay and want to fix my situation myself.

None of the banter is particularly funny.  Our exchanges are not polished standup comedy.  The shaky humor is functional, intended to blow off bad situations.  Defiance lies just beneath the surface.  You are not going to get me, is the unspoken message.  Chronic illness does take a person into the theater of the absurd.  Our coping challenges seem so arbitrary, the luck of the draw.

The choice is stark.  I can laugh or cry.  Too often the impulse is to take the low road and dissolve in tears.  That would cast me as a victim in my own eyes, a role I refuse to play. Breast beating would send a very bad signal to kids of any age.  They must learn to laugh their way through heartache.

This is an extremely long play.  There is no audience around these parts for high drama.  Low humor is acceptable.  Little laughter, frequent smiles punctuate our lives.  I will settle for that.  “Come on, gimp.  We are going to be late for dinner.  Drag your sorry ass out here,” Meredith’s voice rings out from downstairs.  It is just another Friday night.

A Multitude of Voices

February 22, 2012

My wife and I recently graced the cover of AARP:  The Magazine.  Actually, Meredith graced the cover.  I was the guy next to her.  The article focused on our family, and how we have coped with serious illnesses through the years.  Readers were kind, responsive and generous with their ideas for treating chronic conditions, MS in particular.

In letters and emails, through books and videos, experts and everyday folks told their stories.  Virtually everyone had a plan or theory, many with claimed success vignettes of their own.  I am grateful and, frankly, overwhelmed by the quantity of information just sitting on tables and desks, any level piece of furniture.  I do not know what to do with the stuff.

And I am confused.  Who am I supposed to believe?  What should be taken seriously? Every letter was different.  Some of the material is way out there.  Most recently, I received a carton of books with a warm and wonderful note.    One volume offered the cure for HIV AIDS, another the prevention of all cancers.  That thick book contained chapters such as Our Cosmic Connections and Sickness be Gone.  The series presented numerous anecdotal case studies.

The temptation, of course, is to scoff.  But mainstream medicine has not produced formulas for preventing or curing these and many other deadly diseases.  Common sense suggests that I keep looking.  I do believe now more than ever, probably due to frustration with the failure of doctors to treat MS effectively, that the time has come to think outside the box. I am ready to travel new roads in search of answers.

I have come to believe that diet plays an extraordinary role in the direction a disease takes and how quickly it progresses.  Yet one so-called expert contradicts the next.  Eat free range beef and chicken.  Do not eat any red meat.  Take fish oil supplements.  Fish oil supplements are a waste of time and money.  And I am supposed to adjudicate this disagreement for myself?

Common sense is your ally in situations like this.  I have, in fact, stopped eating red meat and even chicken.  There is no way animal fat is anything but bad for humans.  I have cholesterol issues, so this decision seemed to be a no brainer.  Besides, there is something repugnant about eating a creature that is supposed to running around.  “Animals are my friends,” George Bernard Shaw wrote, “and I don’t eat my friends.”

I  try to stay away from dairy products, which many nutritionists have declared a no-no.  I do not drink milk, though a little bit on cereal does find its way down my throat from time to time.  Then there is the shot of half and half in my one cup of coffee each day.  Of course a yogurt makes a mighty good modest lunch.  Oh, yes.  There is that frozen yogurt once in a while.

Did I say I am staying away from dairy?  I do think my intake is modest, especially compared to what it used to be.  I believe in moderation more than absolutes.  This is not a religion, at least for me.  Of course, there are those who worship at the dairy-free alter.

The tough task is to give up glutens, or even understand what they are.
“The mixture of proteins found in wheat grains, which are not soluble in water,”
according to one dictionary.   “Any of the prolamins found in cereal grains,
especially the prolamins in wheat, rye, barley, and possibly oats, that cause
digestive disorders.”  Huh?

In other words, everything you like.  Examples:  breads, rolls, muffins, cookies, biscuits, . muffins, donuts, cakes, pastry, pizza, pasta, pancakes.  Get the picture?  That is just the beginning.  This is not so radical, but the plan is hard to implement, unless you want to be an air-eating fanatic who never gets invited anywhere for dinner.

There are quality of life considerations in any decision we make about what we will eat.  Nobody wants to deprive themselves of all fun foods.  On the other hand, for many of us who know chronic illness, there is a price tag for good health.  I have told Meredith on many bad days that I would eat cardboard if I could feel better.  If we are what we eat, many of us have a big job on our hands.

Chronically Cranky

February 21, 2012

That’s me.

Meredith walks past me in our house and asks, “What’s the matter?”   Nothing, I answer glumly.  “Something is the matter,” she continues.  “What is it?”  If she sits down next to me, I know I am going to have to talk about it.  I don’t feel like talking about how I am feeling or anything else.  I can’t tell my well-intentioned wife to take a hike, though that is precisely all I am motivated to say.

Feeling off is not the same animal as pain.  I have been there and done that and written plenty about the experience.  Felling lousy is more of a low-key sensation, though just as real.  The muted ache or subtle nausea hangs around, finally getting to me.

The fact is, I feel lousy just about every day.  My chronic conditions see to that.  Too often, I find myself in a bad mood.  Most of the time, I feel powerless to do anything about it, except to ignore it when I am able.  I just do not feel well.  Or right.  Or something in the middle.  Usually, I want to disappear.

After two bouts of colon cancer, food is not my friend.  My anatomy is a genuine original.  My GI track is Gerry-rigged.  I have been resected to the point where the roof is in the basement, the front door out back.  Digesting anything can be the day’s most difficult task.  The bathroom frequently is my office.

I used to run all over the world chasing news.  I ate some pretty exotic stuff in faraway places.  No dish was too spicy or just too weird.  These days, I would happily swallow a pill if it could provide enough nutrition and become a substitute for food.  Dream on.

And I have not even gotten to the aches and pains that were thrown in as extras when I bought the MS.  Often back and joint pain dissolve to discomfort.  For years, I could go for days without thinking about MS.  Now that timeframe is down to hours.

I repeat what I have often written in columns touching on the issue of my health.  I am not complaining.  Honest.  I do not like whiners and live in fear that I will become one of them.  I am only trying to explain.  Repeated why meing seems like an effective formula for losing spouses and friends.  Then the question becomes, is chronic crankiness just traveling the same road?

I worry that I cast a pall that spreads invisibly around the house and shrouds anyone and everything in its path.  Lights can seem dimmer as the clouds move indoors.  The kids are grownup and out the door, so only Meredith and I are hanging out here.  I must be a treat as a constant companion.  Meredith is an outgoing and happy person.  Yet she can seem subdued, as if she is breathing in my darkness.  The energy level in the house, customarily high, can flatten, as if we have taken a downer.

Usually, we can amuse ourselves mightily.  When laughter is in short supply, I know something is out of whack.  Usually that signal means I am feeling down and out.  Normally, we give each other a hard time, the gift of grief.  That is a large part of our collective shtick.    We are happy people who enjoy a good life.  Silences can be long, our first date revisited.

On some days, I just do not want to do anything.  Too often, a book replaces a new movie.  We share another evening at home.  I am supposed to meet an old friend at Grand Central Station in the morning for coffee.  I like this guy and have not seen him for a while.  I  am sort of dreading our date.  I feel crummy now and see no reason to believe tomorrow I will feel any better.

Usually I am an optimist, though you might never know that.  Sometimes I peer into a mirror and wonder who I am looking at.  I surprise myself with this tired sense of self.  But the phone does keep on ringing.  Friends reach out and want to get together.  They do not see.

Even as I am acutely aware of my dips into darkness, apparently friends and acquaintances are oblivious.  Even Meredith has learned to go about her business and leave me alone.  She does not cause the problem.  She cannot change it. Self-awareness may be my salvation.  I tell my pals to get a life when times are tough.  Maybe I should do the same.

Pain in the Neck

January 31, 2012

Our 6 a.m. date to watch the news took a bad turn when the steaming cup of coffee Meredith had set next to me toppled into my lap as I missed the ceramic trivet it was supposed to occupy. Scalding coffee on your bare thighs is more than enough to awaken a drowsy person.

In me, it also awakens an anger to match the pain. Not anger at Meredith, who was nice enough to bring me coffee. But anger at the accidents that are becoming more frequent.

When you have a debilitating chronic illness like MS, pain becomes almost second nature. Well-worn joints punished by years of abnormal movements, aching hips and knees, and, of course, herniated discs, become the gift that keeps on giving. I grew used to that long ago. There is little—make that nothing—I can do about it. The inevitable surgeries only become band-aids and create their own pain.

No, it’s not the predictable pain that gets to me. It’s when I become a co-conspirator in my own suffering that my temper flares. The mishaps, the falls, the accidents caused by that magic combination of weak limbs, damaged vision, and acute carelessness—those are what get to me. In many cases, these are preventable mishaps. Illness is no friend, but often I am my worst enemy.

Allow me to entertain you with a few true tales.

Every night before bed, I change into gym shorts. That elegant outfit hangs from a hook on the bathroom door, where I trade them for the jeans I am about to remove. I am nothing if not fashionable.  I sit on top of the closed toilet. This is a slightly precarious perch because the cover is not really flat. Once, as I lifted my right leg, I heaved with such force that I flew off the seat and landed on my head, wedged between the toilet and the shower.

I kid you not. If Dick van Dyke had done that, he would have brought down the house. Not me. I was alone in our house, in quite a bit of pain, and wondering how in the world I was going to make it onto my feet.

Only a few weeks earlier, we had been in a restaurant on freezing Cape Cod, sitting very close to a roaring fire. I was in a heavy turtleneck sweater, oblivious to the fact that I was getting seriously overheated, perilous for anyone with MS. When I stood, my legs buckled, and I hit the floor hard. With help, I got out of the restaurant.

Another time, I got out of the car and went flying again, landing on my ribs and burying my face in a driveway covered with stones and clamshells. I am still sporting the scars north of my neck.

It’s hard to complain when I am to blame. And so I turn my anger inward, raging against the maddening irony that most of the wounds I suffer are self-inflicted.

There is so much chronic illness in America. Am I the only one who seems bent on self-destruction?

A Date with Death

January 27, 2012

Michael was sharp as a razor until one evening, when suddenly he was not. The brain tumor had laid dormant, grown slowly and then exploded like a grenade in his head. This former 60 Minutes producer, who had traveled the globe in search of stories, was suddenly trapped by a misfiring brain, unable to process the world around him.

Gone was his highly evolved sarcasm and appreciation for nuance. Michael had been a quick study, a quality that every good producer needs. Recently I had hired him to produce two neuroscience videos for Harvard Medical School, where I sit on an advisory council. I was counting on Michael to explain and make visual complicated ideas. He did a great job. I accepted the credit.

I doubt Michael will be with us next summer. As I hobble along with a neurological illness that has robbed me of my vision, attacked my ability to walk, and compromised my use of my fingers and hands, I still expect to wake up one morning next summer, and the morning after that. I am fortunate. I will keep on writing, laughing and living a full life. I will love my family, make jokes about how I hate politicians and all will be right with my world.

This is why I say to my sick and suffering friends, and to anyone who is bogged down by despair, “Look around you. Someone always has it worse.”

Michael’s tumor rests in that area of the brain where signals of depression originate. In Michael, those impulses are short-circuited. The man may be frustrated that he must use a wheelchair because he falls sideways when he stands, but we will never know. His friends wonder how much he understands. We do not know and none of us presume to ask. Michael answers questions but offers no details about his feelings. He may not be able to find the words.

I won’t paint myself as a Zen master of debilitating illness. I see red when my fingers fail me and an object falls from my hands. When I fall, especially in public, I am instantly humiliated and, with fists clenched, I apologize to nobody in particular. My family thinks I have a troubling tendency to beat myself up when things go wrong.

I am not depressed, but plenty of the severely disabled are. I truly hope Michael is spared that.

But perhaps it is the certainty of knowing that death awaits that guides us down the road to a perfect peace.

I have no taste for the prospect of a calm life. I want to be the body in motion, not stuck on an even keel like a small boat on a sandbar. For all of us, life is short. I want to feel. I wish I could engage Michael when his anger is out of control, which happens, or when tears stream down his cheeks and he shakes in despair, which does not. How can his anger get out of control if he isn’t able to express his feelings? The previous sentence confuses me. At least then I would know he is still with us. Other friends believe his numbness is a blessing.

Michael’s friends try to visit in groups now, allowing him to tune in and out as his mind wanders, perhaps to faraway places he has visited or has yet to see. This man is loved and protected from everything around him except for what will get him in the end.

Michael would like it if we took away something useful from his journey. For me, the most powerful lesson is that despite my years of cancer and multiple sclerosis, I am a lucky man. I have a great family and a wonderful life. Things could be much worse.

Discomfort with Disability

January 1, 2012

Our journey to the Magic Kingdom began at an airline ticket counter in New York, where picture IDs and airline tickets were the currency of the realm rather than fairy dust and a happy tune. I was nestled comfortably enough into my wheelchair. Airports are large, and gates too far away for me to make it on foot.  The woman pushing the chair said little as she maneuvered the chair through the gauntlet of humanity on the move.

I could see the situation coming. “I can stand and walk through security,” I told her in plenty of time for her to move to the proper line. She said nothing, as if she did not hear. Ropes were moved as the chair headed for a line off to the side. I turned in the chair. “I can get out of this chair and walk through security without the cane,” I said forcefully. Again she did not respond, as if deafness had suddenly set in.

An electronic gate opened, and I was pushed into a private space. “Please stand and place your feet inside the footprints on the mat.” The man was soft-spoken and pleasant. I was furious. “If I can do that,” I said, “I can walk three feet through an electronic screen.” The man simply asked me to spread my legs apart and lean forward.

Screw the charity event, I thought. I just want to go home. The pat-down that ensued was invasive, humiliating, and most of all, avoidable. When the chair showed up, I screamed at the woman, “Why did you do this to me?” Again, she said nothing. “Do you know how to talk?” I asked her. Silence. I knew what this was about. We are our wheelchairs. “Don’t let this ruin the trip,” Meredith pleaded. Now was my turn to say nothing.

“Have a magic day,” the Disney minder said with a smile. Still I could not shake my anger, though I knew I should. The nicer people were, the grumpier I felt.  We had a few hours to kill. “Let’s go to the simulated space launch,” I said to Michael, Meredith’s agent, a neighbor and friend. We had a nice young man assigned to us, a guy with a van and map of side entrances in his head, the fast track to the front of lines for all the rides and attractions.

Again I was in a wheelchair. The Disney properties are spread out, with endless walking to get anywhere. The Magic Kingdom was getting old fast, but I was determined to play the good soldier. Michael had his kids with him. This was not all about me, I lectured myself. By now I was over the airport drama and was ready to have a decent time.

One of Michael’s kids wheeled me through the side door to the space launch.  We could have gone to any of three attractions. An attendant stared at us and said nothing. Meredith and Michael arrived, and the attendant asked them what I wanted to do. “I just learned to talk,” I said with dripping sarcasm. All I wanted to do was leave. It reminded me of a weekend when I walked into a house of worship.  An usher stared silently at me. Meredith had been parking the car. As she entered the sanctuary, the usher asked, “Where does he want to sit?”

The chronically healthy have a big problem. Many seem unable to relate in any way to anyone who has obvious physical problems. Half the population in this country has a chronic illness. Many are disabled. I live with both. And we are treated poorly because others cannot handle our disabilities. The truth is that many of them will join forces with us eventually. Demographics work against those who think they have gone free.

My less-generous side thinks they do not know what they are in for and deserve what they get. My softer side wishes for them a soft landing and a more open mind.

Chronic Disease: Plugging In

December 20, 2011

I can feel low suddenly and without warning, triggered by the mere sight of a physically normal person performing an everyday task I’ll never do again. Sitting by the skating rink at Rockefeller Center, watching kids glide along on the ice, I am startled to see people skating backwards in circles, as if it were no effort. Nearby, shoppers run up and down stairs, skipping a step occasionally and holding onto nothing.

Dizziness washes over me. How do they do it without careening down the stairs, as if in a chute? An exquisite sense of loss overtakes me as I feel again what is missing in my life. There is a loss for all seasons: Spring hikes, summer strolls along the beach, autumn games of touch football join my growing catalogue of what no longer is possible. Even the more mundane tasks — unloading the car, taking out the garbage — are out of reach now. Keeping my spirits up, and my sense of self intact, is a never-ending struggle.

When my wife, Meredith, and I made the rounds of talk shows recently to promote our cover on AARP The Magazine, I told Anderson Cooper that when there’s a problem, it’s important to become part of the solution. That piece of the puzzle may be modest, even small, but the psychological payoff can be large.

For me, participating in the work of affinity or advocacy groups provides the satisfaction of reaching out to others who share my illness. So many of us long to touch and be touched, to connect with others traveling the same road. We deal with doctors enough. Ordinary folks with shared experiences provide a missing link.

Living with a serious illness is in no small part a mind game. We want to feel good about ourselves.  I write again and again about the assault on our self-worth.  I have paid close attention to the tendency to isolate ourselves. The seriously sick walk a tightrope, trying so hard to remain emotionally upright, to feel whole. We desperately want to function in the world, which means we must resist the never-ending urge to crawl into a hole.  We need each other.

We have to engage to be proactive. Those of us who know illness just might profit from working with others. We can share and feel we are a part of a struggle larger than ourselves. This can be a marvelous antidote to inevitable self-absorption.  All of us want to find happiness and live well.

One popular brand of politics suggests that we stand alone, rejecting the notion that we owe each other anything. Those are the politics of the selfish spirit.  When it comes to dealing with debilitating disease, no man is an island. We can be there for each other, helping the suffering through bad times and helping ourselves at the same time.

Empowerment flows both ways. I take phone calls all the time from folks who want to talk about their illnesses. I do not know if I help people, but I know I am helping myself.

Connections matter. I am not sure why that is. Maybe the human touch, even on the phone, reassures us we are not standing alone on the battlefield, fighting for our lives. Loneliness is a common theme at gatherings of chronic illness sufferers I have addressed. No matter how supportive families and friends are, it is wrenching for us to feel so alone.

Sometimes it takes a stranger to make us feel less lonely.

Being there for others can make a bad condition not good, but simply less onerous. Doing something constructive with disease makes me feel like a better person. Nobody I know would hesitate to trade in a horrible illness if such were possible. I would swap MS or colon cancer for an ancient station wagon held together by Band-Aids and baling wire anytime. That is how I see myself sometimes.

And that, of course, is not going to happen. So it is time for Plan B. If you are chronically ill and unhappy with your lot in life — and that includes most of us — do something about it. If your legs can support you, stand up. If you are in a wheelchair, roll yourself to a different place. Try something new. Plug yourself in. You have nothing to lose. That missing something might be within reach.

Chronic Disease: Life Lessons

November 21, 2011

“Don’t tell anybody.”

My diagnosis of multiple sclerosis was about 15 minutes old, my head was still spinning but my father spoke with the authority of one who had been living with the same illness for decades.

“You have to protect yourself,” my father continued without emotion. “MS scares people away. Nobody will hire you. They will discriminate against you. You have to watch out for yourself.”

And so began the long process of sorting out what was appropriate or inappropriate to tell the world about my condition. I wanted to believe my old man was mistaken, that others would not be put off by my own personal neurological nightmare. I was 25 years old, with very few symptoms of a disease that would unfold slowly. A journalist by trade, I was being advised to withhold the news. I decided to experiment with the truth.

At the time, I was in graduate school, being courted by NBC News, and I had been led to believe there would be a job waiting for me when I finished. When I leveled with them about my condition, the lights went out in their eyes. A few years later, I would lie my way into a job with Walter Cronkite. My father already had been pushed out of his position as director of anesthesiology at a hospital in Hartford, Connecticut.

In those days, it would take a discerning eye to know that either of us had MS. In the coming years, I would watch carefully as my dad made his way from his own two feet to a cane to a walker then to a wheelchair. There was no high emotion along the way, probably sadness, but the determination to complete his journey with grace.

That was important. My old man taught me to never feel sorry for myself. The question “Why me?” was verboten under his roof.  I made the mistake of uttering those very words in his presence just once. I was 30 and had just discovered I had a hernia in need of repair. I felt like a victim, and said so. My father quickly labeled me, well, a professional asshole. I did not make that mistake again.

The man had an unspoken mission to be a role model. He did not complain. Ever.  I know he was not fabricating a brave front or propping up his upper lip for my sake. That was who he was. His deep inner strength seemed to be contagious. After he had to give up his medical practice, he hit the books, passed his boards in pediatrics and went back to the operating room as a pediatric anesthesiologist at a highly respected children’s hospital in the area.

The guy was resourceful. He just quietly kept on. That is all you can do with a debilitating disease. Except it also is what you must do. I have picked up the pieces and moved forward in my life. Friends have noted how many times I have reinvented myself: TV reporter, book author, web columnist.

Please forgive the self-serving sound of this account of my trek. The only point is that a person must keep going. On the off chance that this is my one shot at life, opting out and bowing to illness simply are not options. I have a good life. I have been lucky.

The old man might be shocked if he could hear me say such a thing. Or maybe not. I heard such from him for many years. I have a great family, kids whose lives are launched. Their orbit is high, and I do not worry much about them. My wife, Meredith, is Meredith, a bright star and always there for her family — even me, remarkably enough. What do I have to complain about?

My old man lived to know his eight grandchildren and see his 90th birthday. Then he left. I was not there for that, looking to see whether he moved on with a smile. That would not surprise me. I need to frame this column and hang it in some private place where I can reread it from time to time. The lessons are too easily forgotten. I, for one, do not have the time to wonder why this all has happened, either. Life is what it is, and I have a lot to do.

Chronic Disease: A Different Road

November 21, 2011

A recent Friday became another day to enter into my datebook. This would be the day I began my seventh — or was it eighth? — new therapy in three years. My multiple sclerosis is bearing down on me ferociously, and my doctors keep trying new treatments. Lately, it seems as if I am shooting wildly at the aggressor with only blanks.

All of the available drugs for MS are intended for relapsing/remitting disease. Mine is progressive MS, which accounts for more than half of all cases of MS. Right now, there is nothing out there that works to slow, much less stop, the deterioration. I am the square peg in the round hole, a neurological contortionist trying to fit into protocols to treat someone else’s MS. We keep trying them to see if they work; they don’t.

Everyone living with a chronic illness knows the hit-and-miss quality of these therapies too well. Medical research, I am told, tends to focus on what doctors see as the best bet — those for which a solution seems attainable. “AIDS will be cured long before MS,” an NIH official once told me. On this day, beginning yet another drug regimen, I felt I was wasting my time.

When I got home, though, I found a letter from a stranger in Iowa City telling me about an internist with progressive MS, a woman on the staff at the University of Iowa and assistant chief of staff at the VA medical center there. Pretty respectable credentials, I figured. This doctor believes in a different approach, one that focuses on electrical stimulation and diet.

“This is where hope lies,” Dr. Terry Wahls later wrote in an e-mail to me, “not in drugs.” I have been on heavy-duty drug therapies, including two chemotherapy cocktails and numerous interferons. I have injected myself more than 500 times. Now I was moving to a little pill. “Why do you keep putting poisons in your body?”Meredith, my wife, frequently asks in frustration. “They’re not doing anything for you.”

Obviously, Terry felt the same way. Lately, she had been losing the fight against MS, and she had moved from walking to depending on a scooter to get her around the hospital. After implementing her new strategy, though, Terry is up from the chair — a phrase she uses as the title of her new book. She is back to treating patients on her own two feet.

Anybody with progressive MS will tell you there is no such thing as recovering function. And yet, Terry’s story has the ring of authenticity.

Her routine is tough, though. “I have a shocking morning ritual,” she has written. “It is a painful process. First, I wrap elastic straps around my legs, chest and waist. Next, I moisten electrodes. Then one by one, I put them over the muscles in my left leg, belly and back. As I turn the dials, electricity flows into my body. Bugs start racing across my skin. Next, the electricity causes the muscles to contract. Then I squeeze every muscle in my body. It hurts less that way.”

The diet portion of her plan is less daunting. She recommends a diet high in leafy greens, omega-3 fatty acids(from salmon and other cold-water fish), organ meats and green tea.

Terry Wahls gets mixed reactions to her novel approach for combating MS. Some physicians even doubt she has the disease. Doctors generally do not stray far from orthodoxy. I have brought alternative ideas for treating my MS to establishment medicine as well; they have generally been met with dismissive condescension.

If the world of alternative therapies is lonely territory for a physician, it can feel like pure isolation for a sick and suffering lay person in search of answers. How sad that when I have tried alternative therapies, I have learned to not even mention to my neurologist what I am doing. It simply is not worth my time.

But I will say this: If you live with any serious chronic condition, do not look to a doctor and say, ‘Cure me.’  Instead, educate yourself, learn all you can, open your mind and trust your instincts. And keep your ears open, too. Sometimes, you’ll learn far more from fellow patients than you will from your doctors.

Chronic Disease: The Chip on My Shoulder

November 8, 2011

Most people do not see, or care to notice, suffering all around them — that has been my reluctant observation for as long as I’ve been sick, which is most of my adult life. Granted, I may be hypersensitive, but their indifference is often obvious, and it hurts.

I used to ride the crowded subway up to my kids’ school in the Bronx, often standing as the train swerved its way along the bumpy tracks. I frequently noted that when we traveled through Harlem, fellow passengers would offer me a seat, even elderly ladies who had no business standing. People there seemed to identify with anyone limping his way along life’s path.

Back in the comfort of more affluent climes, though, I rejoined the army of the unseen. Those around me were not mean. I am certain they did not wish me ill. They just didn’t notice. As I have observed often — in this column and when addressing various disability and illness affinity groups — it seems that those around us can’t be bothered. I’m angry at their indifference, even though I understand it.

This summer, though, I found myself marveling at the generosity of strangers.

On one occasion, my wife, Meredith, and I were spending time on the beaches of Cape Cod. My problem negotiating the beach was simple: The inability to lift my right foot (a condition known as foot drop, which is common among those with MS) made it difficult to walk through the deep sand, or to amble down a steep sand dune.

Did I say difficult? Make that impossible.

So there I was, leaning heavily on Meredith, who also happened to be carrying a folding chair for me and a beach blanket for us to lie on. She was humming away with each step, even as my cane disappeared into the sand like I was drilling for oil. I was trudging down the dune, thinking each step might be my last.  Suddenly we were surrounded by young guys who emerged from every direction, took everything out of Meredith’s hands and grabbed me under the shoulders to steady, if not to carry, me.

When we left the beach, a different group appeared as the traveling triage squad. My right foot had grown so weak that one fellow walked directly behind me and physically lifted my right foot each time I went to take a step on it. We had become a traveling road show. The guys saw us to our car and would accept no money. They were only acting as good people.

The chip almost fell off my shoulder that afternoon. I say “almost” because I still am trying to understand why the generous spirit showed itself then and there.  The answer may be that people like me stumble down the streets of cities and towns all the time, adamantly struggling to make it on our own. Usually we succeed and do not appear to be in any particular need. On the beach, my struggle was obvious.

On buses and trains, I offer my seat to anyone who appears to be in worse shape than I, and always to seniors. They eye my cane and I tell them it is only a prop. They smile and take my seat. When another offers me a seat, I decline, for reasons I am hard-pressed to explain. Maybe the idea of accepting the seat of another makes me feel weak.

And then I complain.

Anger at an illness is conveniently transferred to people. Other human beings become useful targets for playing out the tough emotions we feel as victims, though most despise that word. The challenge is to bypass the victim mentality and to see and believe in all that is good in our lives. We should not need whipping boys to indulge our frustrations. Our broken bodies do not define us. We should toughen up and leave others alone. Help from another is great, benign neglect acceptable.