Life From a Sitting Position

December 1, 2009

Growing older was quietly painful for me, as I watched my father’s multiple sclerosis advance ahead of mine. My old man had done the same with his mother, who shared the illness.

Our family has an unusual neurological pedigree. We also have a determination not to let it beat us down. My dad would fall and lie helpless on sidewalks and stairs, refusing to concede defeat, which he seemed to define as relying on a cane or a walker. Ultimately, though, that day arrived: my dad, like his mom, finished his life in a wheelchair.

In the dark of night, I imagine in detail where I am headed. I must admit that even as my legs begin to fail, I regard the prospect of a life sentence to a metal chair with special horror, as if I have been there before.

Will it be as awful as I anticipate? I seek out insight from those who know.

Bob Schmonsees has used a wheelchair since he was broadsided by another skier on a slope in Pennsylvania almost 30 years ago.

Do you regard this contraption as a prison? I ask.

“The situation was the prison, the chair an enabling factor,” Bob replies after a moment’s thought. Seven years after his accident, Bob realized he had been in denial and endured a short bout of depression. Then he got rolling again and proved he could still have a life. “I became the top-ranked player over 40 in wheelchair tennis,” he says.

Was that liberating?

“Yes, and gratifying.”

Bob continued as an avid golfer and even ventured back onto the ski slopes, though later he realized that skiing strained his shoulders. Ultimately, he gave up tennis, too, and now deals with the intestinal problems that go with sitting for so long. Still, “I have a good life,” he says.

Then am I a wimp to fear a future in a chair?

“Absolutely not,” comes his quick reply. “You are in a bad situation. This would be a traumatic change. Look, people make using a wheelchair worse than it is, but it ain’t no fun.”

Perhaps a wheelchair isn’t inevitable for me. But in my gut, I believe it is. Eventually, my ability to ambulate will be gone. A walker is next. The rest will follow.

Now a startling admission: I am a wimp. When I was chased through the streets of Warsaw covering the rise of Solidarity for CBS News, or when I ducked bullets in Beirut and El Salvador, I learned to be resourceful. I also came to know mortality and the truth that anything can happen. But now I am covering a different war, with an enemy hidden in my body. And this is the first enemy I truly fear.

I talk to Allen Rucker, who has transverse myelitis, which some people call MS of the spine, another autoimmune disease. “It was frightening,” he says of the moment when he realized that he was paralyzed. Soon enough, he was introduced to his new wheelchair, the mode of transportation he would use for the rest of his life.

“I always considered the wheelchair liberating,” he tells me. “My favorite recreation was to wait until three in the morning and tool around Cedars-Sinai Hospital looking at the incredible art on the walls.”

This was Allen’s private proving ground, his way of easing into his new life.

“Richard, with you there will be nothing sudden about this,” he tells me. “You already are preparing yourself for what might be.”

Allen pauses for emphasis.

“You are on this gradual course,” he continues. “You don’t know it, but you will find it liberating. There is true mobility in a wheelchair. It’s not a horrible thing. You should lighten up.”

Right.

“There always will be the stigma,” he concedes. “People will still think you are a pathetic person. There will be a sense of pity, a sort of death by kindness. You will learn to ignore it.”

Hard to imagine. And pointless, too. What will be will be. I have better things to do than play out worst-case scenarios. I understand risk. I loved toying with it when I was younger.

And yet the wheelchair is so threatening, perhaps because it’s the final public signal of unbeatable weakness and the irrevocable admission that I have lost the war.

I have stood up to this illness for my entire adult life and lived my way. I cannot make my peace with the finality of sitting down.

Invisible Gifts

December 1, 2009

In a scene from the Hollywood classic It’s a Wonderful Life, George Bailey yells at Uncle Billy: “Where’s that money, you silly stupid old fool? Where’s that money? Do you realize what this means? It means bankruptcy and scandal, and prison. That’s what it means.”

This season, these are familiar terms. Just open a newspaper: economic uncertainty hangs over us. Missing now, and perhaps for a long time to come, is the innocent sound of laughter and jingle bells in the distance. The uncomplicated joys of the season—little kids on skates, bright eyes that light the sky—seem to go unnoticed.

The holidays are always hard. That is not new. We tend to use these joyous days in a strange way, to measure our lives against expectations, where we are versus where we wish to be. Disappointment comes too easily. Whatever our faith, gratitude for what we have slips beneath the fast-moving fear of failure that says all is at risk or, worse, lost. We seem to be sacrificing this special moment.

The chronically ill—almost 130 million of us—at least have this going for us: we routinely sail directly into a harsh wind, always at risk of going nowhere and even losing it all. We know what matters: what to care about and what to move to the back of our minds. We do not sweat the small stuff.

If you don’t believe that health is life’s most precious gift, go to one who does not know if he or she will sit at the table with those they love next year. The sick may have learned to live in the moment in ways few others understand. We have no choice. We have nowhere else to go, no matter who or where we are.

Life is precious. The sick understand that as well as anyone. Nothing lasts forever. We have figured that out, too. What is gone in my life, even with all the uncertainty and hardship, helps me focus on what is still there. I do keep learning, as do others around me.

My college-age children know that life is unfair, and they cherish what they have. Their parents see to that, and it is a full-time job. My kids see illness in the family. I hope they never lose what they have learned around the kitchen table: that there are others in the world in need of their help. My kids know they are not the center of the universe. What more important seasonal message is there?

We, the sick, do not often feel sorry for ourselves. Carrying around self-pity is a terrible way to live. That load is large. The road is long. But don’t ask us to get exercised if Citigroup stock is down, or if business investments do not return to 100 percent anytime soon. Those tragedies miss the point and are for the chronically healthy to sort out. Maybe we have different ideas about what is important.

A wheelchair is likely in my future—but this holiday season it sits silent in the back of my mind. Every day that I struggle down the steps to the subway is another day I can live on my own terms. I am grateful. Each week in which I can do for myself is a gift.

Back to It’s a Wonderful Life: in the movie, George Bailey doubts that his life matters, and so he disappears from the earth. Seeing life without himself, his wife, and children convinces him otherwise. He is not as powerless as he thought. Neither are the chronically ill. We have a lot to live for and much to do. We need to stand up straight and kiss somebody. We should smile, wish someone happy holidays, then get on with it.

A Diminished Man?

November 1, 2009

I used to be a player, but now I am a spectator, sitting in the stands as others scramble for the ball I once slammed across the net or carried down the field. I used to hike with my wife, climbing the steep slopes of summer or trudging the back roads of fall as the foliage changed from green to gold and inevitably into a dark, withering suggestion of what it had been.

Perhaps the crumbling leaf is a metaphor for the conventional life, in which all seasons are known and change comes at its own rhythm. Such a time on the planet is to be cherished and celebrated.

Autumn comes early for people with chronic illness, sometimes very early. For those who learn loss in their youth, the physically active world stands at a distance, and they are forced to sit it out. For those of us who knew the exhilarating expectation of the limitless life for at least a few decades, the quality of loss is different. Our hands grasped the fullness of what might be. We had it all before we had to watch in horror as it slipped away.

Arms, hands, fingers start to fail. The silver screen of vision begins to fade to black. Standing turns to sitting. Muscles shrink. The list goes on.

My diagnosis of multiple sclerosis came at 25. My eyesight was ravaged by age 30. Function faded through the years, and the crumbling continues. But one thing I can say with conviction is that I’ve had—I still have—a great life.

The question the chronically ill must answer is this: are we going to be victims? Not me. When I first heard my diagnosis, I made the instant decision to keep going for the gold. It must have been in my DNA; I grew up with a sick father who never gave in. I had no illusions about defeating MS, but I knew that I would win in my life. My determination was never in question.

There is no prescription for perseverance. We have to reach down deep to find it from within. When the world says we can’t, we have to tell ourselves we can. On the theory that this is our one shot in this world, we must go for it with gusto. We must never let illness cause us to lose faith in ourselves, to become spectators of life rather than players.

Truth is, I’m only stuck in the bleachers when I get down on myself for being less than I was, too often forgetting I am, in fact, more because I have learned the hard way.

When the day arrived that I could no longer run or toss a ball with my young children, it hurt me more grievously then it hurt them. They hardly seemed to notice. We substituted chess for football and learned to talk about ideas as we struggled to kill each other’s kings.

Today, my children are in college. There is a palpable joy in our house when they return home with the portion of tales they are willing to share with their parents. Only the laughter upstairs hints at what the other portions say. Success in life can be viewed in the eyes of happy children.

Long ago, I wrote an essay in which I said that a diminished man lives in my house. I believed that back then. I used to measure my life by the flawed yardstick of physical abilities alone. I have since discovered the cerebral world; I know now that who I am is in my head.

I’m no longer sure what diminished means, even as my body continues to fail and cognitive problems plague me. Shouldn’t a life be judged by what it means to others? Shouldn’t we be measured by more than the power of our biceps or the strength of our legs?

I have helped raise a successful family. My beautiful wife lies next to me every night. I have chased news around the world, written books, and said what I have to say. Maybe we all should be so lucky. Too often, we who are chronically ill fall into the trap of measuring ourselves by conventional means and not by what we are able to give to those around us.

But You Look So Good

October 1, 2009

I stumble upon the website during an idle Google search. It is devoted to the day-to-day struggles of folks with chronic illness. The title, “But You Look So Good,” is sarcastically scrawled in a messy hand across the top of the page. I smile. For many of us, that tongue-in-cheek sentiment is all too familiar, the meaning clear: really, you cannot look that good and be so sick.

A young woman I know encounters this attitude all the time. “My illness is hidden,” says Sarah Levin Weiss, who has Crohn’s disease that almost killed her more than once. “I take Prednisone [a powerful, oral steroid] every day, so I have rosy cheeks. I look pretty healthy.”

Sarah has grown weary of people—some strangers, generally well intentioned—telling her how good she looks. That same thing often happens to me. “What did you expect?” I sometimes respond if I know the person. “A cadaver?”

A tension can exist between how we feel and how sick we appear in the eyes of others. When people want to believe we are healthy, then logically—sort of—that becomes how we think we should feel. “That constant tension is emotionally draining,” Sarah says. “We are forced to live a lie to make others feel better.”

The most insincere question in the language, of course, is the simple query, “How are you?”

With me, the word “fine” frequently explodes before I even hear the question mark. Who wants to be bothered? Illness may be a part of life, but as with death, we too often fail to make our peace. One reason a chronic condition may become intensely private is that we realize others do not really want to hear the truth.

“It is emotionally easier for someone to look at you as healthy and holding your own,” Sarah says. Her appearance, no matter how misleading, extends permission not to view her as a sick person. She must be doing well, casual friends and neighbors are relieved to assume.

“Is that okay with you?” I ask.

Sarah laughs. “Sometimes it makes me feel as if I have to prove that I am not feeling well, that things are not good.”

“Why do you care what people think?” I say. “These are your battles, not theirs.”

She pauses and giggles. “Sometimes I care for no particular reason. Sometimes I figure the hell with it, and keep my mouth shut.”

I can understand why she does that. So many in this land share a value system that places a premium on physical perfection and beauty. We look away from the crutches, canes, and wheelchairs. We do not want to see that kind of imperfection. But the reality is that chronic illness is everywhere: heart disease, pulmonary problems, neurodegenerative illnesses, certain cancers, diabetes, various forms of arthritis, and many, many other conditions that are on the rise. Current figures say more than 137 million Americans battle a chronic illness or two.

Still we remain a hidden population. We cannot see each other and do not recognize ourselves. Chronic illness is in our national photograph, yet we want to focus only on the family farmer, the train steaming across the heartland, the baseball slugger bringing thousands to their feet in that snapshot.

Look there, up in the corner! See the figure in the hospital bed? That person is a part of the American portrait too. He is now a patient and does not know what is wrong with him—and he is scared.

Alone with Illness

October 1, 2009

The phone rang. Our audio caller ID announced that the call was from a good friend. I knew he was reaching out, perhaps wanting to take a walk along the river in the fading warmth of summer. My chest tightened a little, and I did not move a muscle. I wanted to be left alone. I let the voicemail pick up his call, then tuned out the message. Was this depression? Anxiety? Simple sadness? It did not feel like any of those, actually, but it did not matter. I just felt bad and wanted to spend my day by myself.

My vision loss and crumbling condition were continuing, and I found it all demoralizing. At the same time, I was keenly aware that my old habit of isolating myself, shutting people away during tough times, would not take me anywhere good. Generally, I am a happy person, though periodically I’m in need of retooling.

My cave is dark and damp and will only pull me down. I know that. “Get out of your head,” a doctor I consult from time to time had advised. She is a neuropsychopharmacologist. I have trouble even saying that. “Engage,” she advised. I am good at that, though these days it is something I must force myself to do.

I am not alone in the warehouse. The chronically ill often retreat when times become painful and our self-preservation instinct sets in. We hunker down. It is a defensive maneuver, sometimes an act of desperation, though too often it can be counterproductive. Alienation from body can be complete when, intuitively, a sick person knows recovery is unlikely and faces the demons guarding the permanent condition. Waking up to another day of the same struggle is exhausting.

My friend Larry Fricks has grappled with this pattern at several points in his life. “I moved up to the Appalachian Mountains exactly for that reason,” says Larry, who battles bipolar disorder and now works to help others handle their conditions. “I craved solitude at that time.”

Larry remembers spending countless days in the 1980s making fires and just staring into the flames. On some level, he knew then that he had to step out into the world. “Occasionally, I would venture into the community,” he says. “I found safe social ventures: waitresses and mechanics. We just took it slowly.” Larry says he was too stressed to attend big family Christmases and other holiday gatherings. The man had become a loner. I do not want that to happen to me.

All of us facing similar circumstances have choices to make. At critical moments, we must take charge of our own journey. The walk to the helm can be shaky, but empowering. Don’t be passive. Do it. These are the lessons Larry learned. He knew he could not find his way back alone. He sought help from depression support groups and started getting out and going to meetings. “It took years for me to make a comeback,” Larry says softly, “but I believe I am back.”

My friend’s fall and rise provide a useful measuring stick for me. We have discussed isolation since I wrote my book Strong at the Broken Places, which featured Larry as one of five individuals living with chronic conditions. There is no hierarchy of emotional pain. One person’s suffering hurts as much as anyone else’s. We must watch and learn from each other as we attempt to keep our balance on life’s mighty seas.

The instinct to go it alone can shut us out of our world, separating us from people who care. It can take us down difficult roads. I do not much like myself as the solitary soldier. Isolation offers only loneliness. I did not choose to be in this place, but only my own map will show the way home.

Physician, Heal Thyself

September 1, 2009

At 25, I sat by the phone at the appointed hour waiting to hear from a neurologist. He carried bad news, but thought that a quick call would be a fine substitute for the intimacy of a personal visit. “You have MS.” Diagnose and adios. Nothing more to say. Bye. His cold detachment launched my maiden voyage into illness; it will stay with me for all my days.

Stigma knows many forms and can become just as debilitating as a condition itself. It chips away at a person’s self-esteem and adds heft to the baggage on our backs, weight to the load we must carry.

When we find ourselves on the receiving end of stone coldness or worse, and it comes from our trusted physicians, we know we have lost a valued ally. Take mental illness. “Before my illness, I used to view patients with depression with bewilderment and disdain,” Dr. Paul Konowitz wrote in a letter to the editor published in The Boston Globe. Konowitz, an ear, nose, and throat specialist who teaches at Harvard Medical School, underwent an effective though involuntary form of attitude therapy. He became sick with a rare, life-threatening, chronic autoimmune disease. And the shoe switched feet.

“I used to walk into the examining room with my bias. I would check out the chart before I saw a patient. If I noted the use of an antidepressant, I would wonder if the problem was real or if the patient was crazy,” Konowitz admits. “Then my depression became really bad. I realized an antidepressant is like blood pressure medication, a legitimate drug. That was a big change for me.”

That judgmental edge is not about mental illness alone. Konowitz says that chronic pain is another area where doctors can be suspicious. But why do so many physicians bring unreasonable doubt to the bedside? “When you cannot measure the problem, if there is no blood test, understanding is hard to come by,” he says.

Perhaps a physician’s closed mind relates to simple frustration at a human being’s inability to help patients, not just with those with mental illnesses and chronic pain, but with the myriad of other medical mysteries. American medicine is the best in the world. Just ask an American doctor. But in the practice of medicine, there is much that is not known or fully understood. That may be a tough pill for a lot of doctors to swallow.

It is not just the lay public that bears the brunt of physician impatience with physical limitations they do not always understand. “Physicians are indirectly taught to ‘man up’ and keep silent about their own issues,” Konowitz wrote. The doctor must stand taller than the rest.

The Quack Frog, one of Aesop’s fables, teaches the well-known moral: “Physician, heal thyself.” The message might as well have been, “Exist as one with perfection.” Aesop must have been referring to a surgeon. After all, who would go to a dermatologist with warts? Maybe the problem lies with us. Perhaps we insist that something is wrong with a doctor who is carting around human problems.

Dr. Paige Church has seen this from both sides. She has congenital spina bifida, and as a neonatologist in Toronto, she deals with many young children with similar, serious problems. She, too, believes physicians are threatened by illnesses in their own ranks.

“There is a line differentiating the physician and patient. It is not acceptable to share one’s own weakness,” she writes in an unpublished essay. “I maintained my silence [about my own illness] to avoid being perceived as weak or less able by colleagues. I am not. I have come to recognize the stigma of these conditions and of a physician openly having them.”

The doctor double standard can be powerful. My father, a doctor himself, believed many individuals became doctors to beat their own mortality. It seems to me they are too well-educated to possibly believe that is a battle they can win.

We tell ourselves that times have changed in America. No longer do we extend a hand to our physicians so they may laboriously climb onto those lofty pedestals where, too often, we still believe they should stand. It is okay that our lawyers and accountants be jerks, but our doctors? No. They must be held to a higher standard.

We have not decided what we want our doctors to be. I am not looking for a friend. I just want good advice. I scoff at the idea of doctor’s “orders.” If we do not like our physicians, never mind taking offense at whatever biases come our way, we should go shopping for replacements.

We demonstrate more care shopping around for cars and consumer items. Maybe we need to decide what we are looking for and find it. The rest will take care of itself.

A Life on the Edge

July 7, 2009

After decades dueling with multiple sclerosis and attempting to live gracefully with the ambiguity of uncertainty, my dance of denial has ended. The music has stopped. For the first time in my long siege, I am facing myself and am terrified. The MS has turned treacherous.

My vision is slipping away, piece by piece, fading to opaque at modest distances. The exquisite detail of life is gone. The world blurs with a new momentum. I do not know where or when, even if that free-fall will hit bottom. Multiple Sclerosis attacked my optic nerves many years ago. Peering through fog feels old and hits hard as new every day. And my spirit suffers.

I am a journalist. Eyes and ears on the ground. I have covered wars in the Middle East and Central America and reported events as diverse as the flight of the first space shuttle and the rise of the Solidarity trade union movement in Poland. Always, I found turf on the edge. I needed to prove to others – or more likely, to myself – that I could do what others so ably took on. I wanted to know life in the crucible.

And I learned to live by my wits. Isn’t that what the seriously sick do everyday? Twice I have survived cancer, which only made the MS more difficult to control. At the end of that ordeal, I walked away, damaged and feeling emotionally indestructible. I was determined to win, never willing to admit to myself that long ago, the deck had been stacked against me, and happy endings were unlikely.

What is winning, anyway? My vision may be deeply flawed, but in my mind I see clearly. Winning is living a good and productive life. Winning is enduring trials with grace and dignity. My family is healthy, intact and successful. Doesn’t that constitute victory?

Stay positive, I advise, in endless conversations with myself.

I believe I am not the only ailing individual who feels fear. More than 135 million Americans live with chronic conditions. These illnesses may be managed but never cured. Our ranks swell as we age. The ability to cope may reveal who we are and what construction materials were used to make us. I want to be earthquake proof. Yes, I am shaking now. Maybe that is my new dance.

I have written two best sellers about coping with chronic illnesses. They sold well because people want to hear each other’s stories, and we care about issues of illness. This column is devoted to mapping the journeys of the chronically ill as we navigate rough waters.

We fight on many fronts, reaching beyond the chronic conditions themselves. We must grapple with our own demons, the frequent loss of self esteem, lagging confidence in ourselves that should tell us to face the world and seek what we need in life. Go get it, we all want to say.

Long ago, I vowed that limitations in my life would not be self-imposed. I am a resourceful fellow. I would lift my life above my problems. Too often, self-confidence ebbs. And we stop challenging ourselves. I traveled the world in the news business, searching for great stories and high adventure to broaden myself and keep pushing forward.

To live well with a chronic illness largely is a mind game. When asked to counsel young people with any newly diagnosed chronic condition, I say to frequently panicked persons, your first appointment should be with yourself. Think about who you are and how you want to live. How will you make the most out of your life now? Do not define yourself by a disease or stifle your dreams with visions of possible outcomes.

When I married Meredith Vieira, I was the big senior producer, she the promising little correspondent. We all know where things went from there. I am lucky Meredith still has time for me, though it most certainly is not in the morning. Illness is a family affair, and children of any age humble a person who is sick. Self-absorption can follow closely behind illness and cannot be allowed.

I lost my bearings with my family when I had colon cancer. My anger at the world hurt my children. Too often, we, the sick, withdraw and feel isolated. Illness can be a lonely experience. I am here to say we are not alone but a community, and we stand together.

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?