Author Archive | Richard Cohen

Tending to Alzheimer’s

April 26, 2010

It makes me want to crawl under the bed and put a pillow over my head. I’m telling you out there in blogland, whoever you are, whatever your circumstances, each of us will be touched by Alzheimer’s – spouses, siblings, friends and neighbors. The disease will show up in our family or across the back fence. You’ve heard the staggering statistics. Brace yourselves.

What I can’t decide is whether it is worse to have the dreaded disease or to take care of a loved one and watch him or her vanish into the ether while lying still in a bed with a beating heart. Many of us take care of each other in good times. That is casual and routine. A slowly disintegrating mind is a different heartbreaking story.

My wife’s brother is only 60, but his early onset Alzheimer’s is turning him into an old man. He’s a good guy and a bright person, interested in the world around him. Now, he has little to say. He stands around, head down, looking at his feet.

I believe that even if an Alzheimer’s patient knows the diagnosis and understands the prognosis, awareness fades fast. A sense of the journey must be lost, the destination missing in the haze. Maybe that is a kindness, an ironic dimension of an unkind illness. I do not know, exactly.

I believe it is the caretakers we must worry about and watch. They often bear the brunt of heartache. They are there to witness close-up and in horror as a loved one slowly leaves. And they bear the scars. Ted Comet is a brave man. His wife survived the Holocaust but will not beat this killer. Ted is a survivor himself, and though he is deeply in love with this woman he is losing, he knows he must stay alive to do his duty.

More to the point, Ted wants to live. He has figured out that helping others keeps him going. He is well into his 80s, rides a bicycle around New York City, and maintains an identity beyond his wife’s keeper.

I admire Ted.

There is so much illness around us, so much bravery. There are no merit badges, no medals for facing down illness, in your own body or that of another. Anyone who is sick or knows illness in another should think twice before feeling sorry for ourselves. Just look around and see what others are going through.

Maybe it is not enough to take care of ourselves. Perhaps we should reach out to relatives, to friends and neighbors to help carry the load. The elderly love to be around children. Everyone knows that. Students search for community service projects. Sometimes they need many hours of service to graduate. Maybe we should steer them to homes, group and private. This would be a gift to the sick and, frankly, to the kids themselves. This kind of program would offer them insight and experience and, maybe, a sense of satisfaction they never have known.

Physician, Heal Thyself

April 19, 2010

Physician, heal thyself.” So wrote Aesop, the Greek, suggesting that physical imperfection in a healer is not acceptable. How wrong he was.

We spoke with a Boston doctor dealing with a serious chronic illness and what we have learned is his sickness made him stronger and more sensitive. The doc woke up and started listening to his patients. Hearing them, I should say.

That is my primary complaint. When I am in an examining room, I feel as if I am talking to myself. This doctor with his own health problems will live up to the Hippocratic Oath with a fierce commitment, born of his own suffering. I imagine that is a difficult change to make. It is a mark of humility I do not associate with the medical profession.

Illness changes people, even physicians. What I generally keep to myself is my distrust, even scorn for doctors who believe they are the story when the drama of illness should be center stage. I wonder if doctors have a higher approval rating than members of Congress. But how deep is the average doc’s determination to put the public good first?

Doctors hide behind the limitations imposed by managed care. That is a cop out. They’ve only got a few minutes to learn about your life. Truncated visits with patients do not mean we are only a collection of symptoms and not the whole people we try to be, in spite of our illnesses. The purely clinical approach with little eye contact and scant dialogue about our lives render the narrative of who we really are close to meaningless.

How telling it is that a physician needs to experience serious sickness, to walk in the shoes of suffering souls, to understand what his real job is. Doctors need to look up from test results and evaluations by consulting physicians and take in the whole patient in that hospital bed. Are we out of work and scared? Maybe we are depressed or having family problems. That’s news a doc can use.

Should he or she in the white coat care about all this? Yes. Of course. The quality of connection between doctor and patient is so important. A friend in care needs to look at all the evidence to treat the whole patient. I have to admit I have given up on the doctors in my life. It is not that they are not great mechanics, but their duties should go beyond checking our spark plugs once every year.

Medical students should learn what humanism is from the get-go. Go ahead. Look it up. Medical students should start these discussions while they still remember why they went to medical school in the first place. Get them while their minds are open and they really care. By the time they are interns and residents, they are consumed with their own survival, and it may be too late.

What we don’t need are more Volvo mechanics.

It is no secret that many Americans are unhappy with their doctors but do not want to say it. How many of you are you happy with your doctors? Please open up about what is missing. Describe your chief complaint. If you don’t tell your doc how you feel, how will anything change? 

Death Came Too Soon

April 12, 2010

Death always arrives too soon. We grow up hearing that death is part of life. Many years can pass before that statement is processed and believed, never mind experienced. Jamie Raab, who I interviewed about becoming a widow too early, saw her husband survive a stroke and succumb to another one a year later. Yes, his death was part of his life. It also was arbitrary and nearly impossible to comprehend.

Jamie spoke candidly about the emotional swings that go with loss. She talked about anger and loneliness and hinted at the self-doubt that lurks behind the scenes. We discussed her new quest for control, probably from losing it to a condition she could not change. We laughed about her penchant for hiding behind the broom and dust mop. Jamie cleans her apartment with a vengeance these days.

Emotions also run strong with any serious sickness that diminishes a person and fractures the quality of a life. Progressive diseases progress, demanding countless compromises. The Faustian bargain that never will be accepted is this: I will live with what I have right now, the offer goes, just don’t make it worse. Of course that offer is routinely rejected, without appeal.

I, for one, feel that a little piece of me dies each time my condition worsens, chipped away cruelly as the MS takes another step.

This is not a contest, and there is no hierarchy of suffering. I would not be so misguided as to compare my ordeal with Jamie’s. That is not the point anyway. Loss assumes many forms. It may assume tragic proportions for us because whatever disease is attacking our bodies, that’s what we live with.

When others we know have it worse than we do, that becomes a valuable frame of reference for judging our own problems. It does not lessen our own pain. When I sit wide awake in the middle of the night, I do not dwell on the plight of other people. More likely, I am thinking about the challenges of tomorrow and wondering how I will make it through another day.

There is so much pain out there. I feel for us all. Long ago, I decided that I want to live my life with grace and dignity, keeping any bitterness to a minimum and to myself. I will not pretend I do not hurt. The mythical red cape and “S” on my chest are a fiction, except maybe on my pajamas. But I feel better about myself doing it right.

I suspect Jamie feels the same way.

Even the strongest among us dissolve at the loss of a spouse. We think part of our life has ended, too. I wonder if we ever recover from the death of the one we love. Do there have to be years of misery? Are there any shortcuts in the mourning process?

Diabetes War

April 5, 2010

Yes, Diabetes is genetic. Type 1, or childhood diabetes, as it has been called, is a function of your genes. It is not your fault that you have it, a conclusion reached by many when Type 2 Diabetes runs rampant. Type 1 presents itself arbitrarily, except for unseen branches on your family tree.

Type 2 is the story in the U.S. today. It, too, is genetic but can be headed off or controlled with a healthy diet and regular exercise. Americans are living with record levels of obesity. Massively overweight individuals become a magnet for the disease, and Type 2 rates are exploding to epidemic proportions. The condition is seen in surprisingly young kids.

Type 2 becomes a lifestyle disease because a healthy diet and regular exercise can keep it under control. The American penchant for overeating and high fat, fast food diets are fueling the fire. Look at Father Andrew, who I’ll interview later with his doctor.

The medical community is doing a dance because they do not want to peddle guilt and there is a profile of those who frequently get Type 2. Patients often are lower income, less-educated people, often minorities. Doctors, quite adroitly, hesitate to foist guilt on them. They want to draw these folks in and are afraid of pushing them away. It is not effective medicine to point fingers and assign guilt. This is where medical political correctness comes into play.

This strikes me as a high wire act. Fatty meals and junk foods are the culprits – staples for poorer people. Sitting on the couch without any exercise, even just walking, exacerbates the insidious effects of crap in your system. Maybe after the bad diagnosis appears on our doorstep, we wake up and change our ways. Maybe not.

What about our kids? McDonald’s, Coca-Cola and Campbell’s Soup, announced that their child-oriented advertising will do more to promote health foods and exercise. Right. They still are peddling the poison. These companies, which account for two-thirds of child-targeted food and drink commercials on TV, agreed to cut back the use of characters such as Shrek and the Little Mermaid to pitch unhealthy foods.

Let’s see how long that lasts. McDonald’s tried this once before, but customers just continued to go for fatty Big Macs. These companies respond to political pressure and a perceived public demand to demonstrate corporate responsibility. Then people stop buying healthy because the high-fat, sugar-soaked products are more appealing. If they build it and people do not come, we are back to where we started.

There is a push from the federal government and in some local quarters to keep crap out of our schools and get kids to learn to go healthy at snack and meal time. Of course it comes down to corporate profits. Getting companies to dump this stuff out of vending machines at schools is no easy task. In the end, it comes down equally to personal responsibility.

The doctors cannot do it all. We must be proactive. I believe we need to take more responsibility for how we lead our lives. This is not brain surgery. Why do people find it so difficult to adjust their lifestyles, regulate diet and exercise? It makes life better.

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.