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Independent Living

May 17, 2010

We take it for granted, the ornate front steps and tasteful stride down into the kitchen or living room. The kids are upstairs calling out for help on their homework and can we have dinner, down the steep stairs, out onto the uneven lawn?

This is a common scene of the great American family at day’s end. Mom and Dad sip a drink, too content to be mindful of a large and growing segment of the population that is shut away from that idyllic life.

Think about the logistics: These individuals are the disabled. Even if they could find and win jobs to support an attractive lifestyle, the work would likely be low-paying. The unemployment among the disabled runs at about 75 percent. Transportation for those who can’t afford specially fitted vehicles is out of reach. A shocking number of the disabled are locked away in nursing homes, though government could probably spend less money locating affordable housing, decent jobs, and assisting with transportation to assist people with special needs.

The leaders of the independent living movement often operate from wheelchairs. They bring passion to their cause and know the ins and outs of the bureaucratic documents, such as the Americans with Disabilities Act. Most would agree that their biggest hurdle is a condescending or ignorant public that does not give a damn.

Americans see the disabled, physically and mentally, as half people. Then there are the myths: ‘the disabled lead tragic lives and deserve our pity’ myth; ‘the disabilities define people’ myth; ‘the disabled are sick and in endless pain’ myth; ‘the disabled are special and deserve special treatment’ myth. These are all wrong and stupid. The myths are nothing more than a guaranteed formula for never changing the system.

The independence movement is cross-disability. You will see as many white canes and dogs as wheel chairs. These people, as they are known with good, old-fashioned condescension are victims of quiet discrimination. So are the chronically ill. The chronically healthy do not want to deal with any of us. Leaders of the independent living movement find that discrimination comes at them even from the medical community. A little too freakish. Too much paper work. Too many special needs. I would have expected much more from our doctors.

One alternative to independent living commonly accepted by a healthy public is assisted living, which many in the disability world consider segregated and second-rate. Many call it glorified nursing-home care. There are many unhappy people whom god did not seem to smile upon in the first place.

And the healthy are continuing the trend, which I would label again as genuine discrimination. You do not need race, religion, or gender to make discrimination a powerful issue. The sick and disabled seem to have a soft voice, difficult to hear over life’s din, unless people are listening which apparently, they are not.

Americans do not seem to know or care much about the living conditions of the sick and disabled. Are you sympathetic to the sick and disabled who desperately seek independence? If not, why not? 

Hearing the Worst from Your Doctor

May 10, 2010

For a long time I thought multiple sclerosis was about as bad as it got.  Then I joined the Council of the Harvard NeuroDiscovery Center and learned about Huntington’s disease and Amyotrophic Lateral Sclerosis (ALS), which is also known as Lou Gehrig’s disease.   My view of my own hardships and really the world, have changed.

I profiled an ALS patient in my second book, Strong at the Broken Places.  I saw a lot and learned even more about the disease.  Horrible.  Maybe the worst.  I met a physician in his late 40s, an academic ophthalmologist living – if that is what you can call it – in Beverly Hills.  He lived in a living room converted to a hospital-like area in the home of his retired parents, who were best able to take care of him.  His wife and children lived in the neighborhood and were frequent visitors.

Neil just lay motionless in bed, an inanimate object that could have been on display in a wax museum.  Though his color was good, a healthy pink, and he was clean shaven, not a muscle even quivered.  Neil’s eyes were wide open, staring straight ahead.  Every five minutes a bell rang.  A nurse walked over and put drops in Neil’s eyes because he could not blink.  “Talk to him, Richard.  We read Blindsided.  Speak.  He will understand everything you say.”

I stepped into Neil’s line of sight and proceeded to tell him about my new book.  There was absolutely no response, though I realized he could understand every word I spoke.  To say the experience was weird does not even come close.  Neil was hooked up to a polygraph for administrating lie detector tests.  He would be asked yes or no questions, and could communicate in a rudimentary way.  Neil’s death was the final fact I was able to wedge into the book a few years later.

Diseases are cruel.  Suddenly, my MS seemed manageable, if not reasonable.  If you are sick, just take a look around you.  Eric Lowen is a singer.  Eric lives in his wheelchair and can no longer sing.  Eric has outlived his life expectancy since his diagnosis many times over.  He can still speak.  I reach him in California regularly.  He wears a headset and can carry on conversations normally.

I don’t know that I could live with that disease past a certain point.  Neil had no exit strategy.  Neither does Eric, that I know of.  I do know that he cannot do it alone.  What a horrible position for a loved one to be in.  I suppose there are ways, with no questions asked.

I just want to know how we can spend upward of $2 trillion on foreign soil fighting an uncertain enemy while we spend $29 billion on National Institutes of Health  and a certain enemy that kills our citizens arbitrarily in the night.  I would like our national leaders to spend a day or two with an ALS patient or some poor soul with pancreatic cancer or any other disease that kills horribly and rethink our national priorities.  Disease is terrorism, too.

Fighting Mental Illness

May 3, 2010

Journalism is America’s greatest continuing education program. It never ceases to amaze me how much I do not know. When I started my second book, Strong at the Broken Paces, I took on mental illness as a subject. I knew that one person in five, maybe four (whose statistics do you believe?) shows symptoms of a mental illness. It can be simple depression… which is only simple if it’s not you who is feeling it.

That’s it – the sum of my knowledge about a terrible problem affecting millions of Americans.

There is something else I know. I and my friends and neighbors, school chums and Sunday school pals grew up making fun of the mentally ill. And black people and the disabled. They were great targets because we thought they were weak and vulnerable. We didn’t know anybody in those categories, but not having a clue didn’t stop us.

So, here I was, an alleged adult, now preparing to profile a man living with bipolar disorder for a serious book, and all I could think was, get me out of here. I had already publicly admitted that I felt funny meeting the man I would profile – not exactly a healthy approach to portraying someone accurately. I used the word “crazy” in front of him. Not good. That began a conversation he and I had about the power of language. How about the power of culture? Movies and music have long portrayed the mentally ill as violent, not to mention dangerous, terrifying, unkempt, smelly and, of course, sexually deviant. Remember ‘Psycho‘? I only recently came out from under the bed.

The point is that we are products of our popular culture, and I am no different. Only, I should know better. The mentally ill are well aware of how they are seen by an indifferent public. Larry, my bipolar friend, is gentle and completely rational. Larry also is supremely patient with people who put their foot in their mouth. He has taught me a lot. People who must grapple with a mental illness should not have to take us on, too.

We have a long history to overcome.

Our kids should study this subject in school. Students discuss civil rights. I argue that how we discriminate against the disabled is a genuine civil rights issue. The mentally ill need the same protection. Want some evidence? Check out this press release issued not long ago. “The Justice Department’s Civil Rights Division today announced that it has filed a motion for immediate relief to protect individuals confined in seven state-run psychiatric hospitals in Georgia from the imminent and serious threat of harm to their lives, health and safety.” Need I say more?

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.