Doctor Distrust

June 10, 2010

Our well-worn portrait of America features a steam engine chugging laboriously across the Great Plains while a sepia-tinged family farmer in overalls and a baseball player in a baggy uniform both wipe sweat from their brows and dirt from their hands. This snapshot of America in a bygone era also shows a white-haired physician, the guy we considered our best friend. Stethoscope around his neck and bag in hand, he guarded the health of our children and our parents and all of us in between.

Today, we have a hard time just getting in to see our family physician, and when we do, the doctor is often rushed and uninterested in anything other than what brought us in to the office. The docs of yesterday knew our families. Today they are barely aware that we have families.

We need to see our doctors. We wait. This afternoon, maybe? We will try to squeeze you in next week. We are told the doc will call at five.  The phone does not ring. We are assured the prescription will be called in to the drugstore.  It still is not there. Many physicians no longer accept insurance. They have to wait too long to get paid. These docs do not even want to bill us. For many it is cash or credit card while we’re in the office.

Young doctors invariably graduate from medical school in debt. These professionals face years of residencies and fellowships that pay very little.  Then they want to have lives of their own. Most marry, have families, and are faced with even more financial obligations. You can’t really blame them for wanting to make a decent living, but at what cost?

Future physicians work under increasing pressure and spend long hours on the hospital floors. They begin to see patients as charts, not people; a collection of symptoms, not human beings. Internships and residencies are practically paramilitary operations, with these young doctors just trying to survive.

However, I have no patience for those who blame the system for the fact that physicians can seem so cold and uncaring.  Don’t tell me managed care or financial pressures are to blame when my friend’s doctor chastised her for referring to an item about her condition in a newspaper:  “If you are going to get your medicine from ‘The Wall Street Journal,’ you don’t need me.”

I learned I had multiple sclerosis during a phone call with a neurologist.  Apparently, a life-changing diagnosis did not merit a personal visit. When a cancer patient profiled in one of my books received his diagnosis, it was from a radiologist who realized the guy did not have a clue.  The primary physician had not bothered to pass along the bad news.

I am not suggesting that every practicing physician in America treats patients badly or is ignoring their emotional needs.  Some are there for us, come hell or high water.  But there is too much anger at the medical profession to conclude that all is right.

If you are disappointed in your doctor, say goodbye, ask for your records, and move on.

Deteriorating

April 12, 2010

I am sick and getting sicker. I have known this day was coming for most of my adult life. I can no longer move my fingers enough to put on a pair of gloves. I can no longer slide smoothly into the front passenger seat of a car, instead having to grab my pant leg in my fist and drag the deadened limb into the vehicle.

The inevitability of physical decline is a sad fact of life. There is nothing anybody can do about it but endure the ride. In fact, for anyone with a beating heart, the train already has left the station. Yet for those of us with chronic conditions, that physical decline can become overwhelming. Despite all the advances of modern medicine, these illnesses are incurable, and the script has not yet been written.

And so we learn to live with ambiguity. The ride is a descent of various angles and turns. My rate of decline most certainly will not match my neighbor’s. The speed varies. But we do not get better. That is a fact.

My slide down seems to be picking up speed. I am trying to figure out how to deal with that. I cannot change it. The trick is to cope with it better and move on.

We can live in that dream world called denial. I have spent my fair share of time there. Denial is the land of how we would like life to be. Illness that cannot be controlled does not fit in there. There are no Faustian bargains that allow us to negotiate our way out of trouble.

Back in the real world, we have a big job in front of us. This sickly state is no place to spend a vacation. But here I am. I am losing my vision, bit by bit in steady erosion. What I once saw with clarity is washed out now, faded into a bleak nothingness. Still, I peer into the future.

I have written about declining eyesight before. The first time I used the word “terrified” in a column was on this very subject. There is no fear like the specter of sightlessness. It won’t get that far, my doctors assure me. I’m not convinced they know what they are talking about.

Optic neuritis has attacked my optic nerves like soldiers in a war zone. When my doctors are done reassuring me, they admit they are perplexed. Should I fold my tent and just slink away? I do not think so.

There is a place for personal courage in this process. All of us must define faith for ourselves. Whatever form it takes, we must learn to trust and allow ourselves hope. I have faith in myself and my ability to push away fear and keep going. I have been doing just that in the decades since I was diagnosed with multiple sclerosis.

Who I am, my true identity, rests in my head. My mind is central command, and I see clearly. I am not going to give up now.

I am going to be strong and quit whining, live a great life, and there is more to come. I feel good about myself. I am living my life with grace and dignity.

I am going to keep teaching my college-aged kids to live well, to take on whatever challenges or setbacks come their way. I want them to be able to find satisfaction in an imperfect life.

Life is imperfect, as my disease keeps reminding me. Things do not go our way all the time. Gotcha. Life is not fair. Okay. Got that, too. Life can be sad. Right. I am beginning to see a pattern here. Let the mythical white flag rest forever in the closet, may my powder stay dry, and, please, let the fight continue.

Chronic Companionship

April 5, 2010

It had to happen. In the last few years, dating web sites for the chronically ill and disabled have suddenly appeared, becoming a little known fixture in an increasingly diverse social scene. Niche dating is nothing new, but in this new world of online social networking, web sites such as Prescription4Love.com or nolongerlonely.com appeal to the physically, if not socially, disadvantaged. This is the American version of untouchables.

There is no question that in a culture that celebrates physical perfection and beauty, many of us with chronic conditions have become outsiders. The computer is changing that. There are designer sites for those living with mental illnesses or sexually transmitted diseases. Positivesingles.com was created as a home for those who have tested positive for whatever, the new level playing field. In this era of general dating sites, these sites are targeted.

After all, there is a site for single cyclists who want to spin their wheels together. And another requiring an IQ test, for those who seek stimulating conversation or smart kids. Religions have their own sites for those who want to keep the faith. Why not for the sick and disabled, who believe they begin their social lives behind the starting line and automatically are at a disadvantage in the social marketplace.

I believe it is true that young people living with physical problems have as much social currency as amputees and ugly girls. Illness is a high hurdle in a race that is very fast. There is at least the illusion of safe and solid ground when someone is dealing with a pool of possible soul mates who have so much in common.

I will be open about my skepticism regarding any and all dating web sites. I have heard too many stories of exaggeration and lies in people’s appeals to each other. Singles lie to each other in the effort to sell themselves. Whether it is claims of fancy job, the elevated income or a sophisticated taste for high culture, truth becomes elusive.

There is a perception of safety and security in sticking with your own. I am not sure anyone’s own are more honest and safe. Awkwardness is averted, the reasoning goes. Compatriots in chronic conditions get it when it comes to what they all are up against. Dating through the standard sites, explaining the intricacies of your condition, all the while wondering how quickly a date will scramble for the fire exit can feel like a high wire act. The hope is that all the BS becomes unnecessary on these specialized sites. Telling the chronically healthy the truth about compromised health does feel risky.

We seek connections. Loneliness and the search for community are chronic themes for the sick and disabled. Our self-imposed isolation and appreciation for others like us seem polar opposites. Many who have been drawn deep into their own heads long to be saved from themselves. These sites are seen as a solution. That assumption, too, seems risky.

In theory, these specialty sites let a person cut to the chase and draw those with similar conditions into each other’s orbits. Sometimes I feel like a physical train wreck with my medical problems. I am not convinced I would want to get on track with another, simply based on who else might be going along, careening out of control.

So the instinct to find a sick soul mate may seem like a safe bet. But an odd set of statistics pulls the rug out from under us. In a new survey by the Pew Internet & American Life Project, adults living with chronic conditions are disproportionately offline. They simply are not playing the game.

Social networks such as those I write about are under-subscribed. According to the survey, eighty-one percent of adults with no chronic diseases go online, while only sixty-two percent of those living with one or more chronic conditions do the same.

What is that about? Polls do not tell us why something is happening or not happening. Chronic illnesses, of course, are incurable. Maybe those of us who carry no hope that life is going to improve have less of a hunger for connections we fear will deteriorate with them. Relationships unravel with the challenges of illness. The sick and disabled may not want to play the dating game anymore, even with each other.

I have written about the search for community by the sick and disabled. I believe that journey can be intense. Maybe the question is how one defines community in the first place. The Pew survey found that adults with chronic conditions prefer connecting to health professionals and friends. Many of those friends are individuals with the same or similar medical problems. People with their feet on the ground, not individuals parachuting in from cyber space seem more trustworthy.

Marriage put an end to my dating days when the Internet existed only in some geek’s imagination. Investing emotionally in the possibility of meeting the woman of my dreams through disjointed text messages, when we are free to lie and exaggerate, seems unappealing, Living happily ever after sounds improbable. I am not convinced that sick people are any more honest than perfect specimens. Seeking community and marrying your mirror image are not the same thing. The danger here is that we are creating cyber-ghettos in which the alienated and fearful will hang together, which makes it easier to withdraw from the world.

Searching for Community

March 18, 2010

Chronic illness takes a person on a lonely journey. No matter how lovingly a family surrounds and embraces a seriously sick person, many of us feel alone. Illness can be isolating, and all too frequently, that loneliness is self-imposed, as we withdraw from those closest to us, not wanting to be a burden to them.

Perhaps that’s why many of us feel drawn toward others who share our conditions. We join affinity groups, single illness advocacy or service organizations. For some of us, these groups become our second family—brothers and sisters who listen, offer advice, and are there to help in any way they can. We do not have to go on and on about our conditions to our comrades. Without saying a word, we know they “get it,” and sometimes, they’re the only ones who do. This becomes a special comfort zone, a safe place where we can just be with others like ourselves.

Recently, I spoke at Harvard Medical School as part of a series of workshops called Life with Long Term Care. I talked about what it was like to live with multiple sclerosis. The room was filled with doctors and soon-to-be docs. Then came invited guests, many on scooters and canes, some in wheelchairs. These were people in search of each other. They spoke more than the docs and medical students in response to my remarks. And they did so in open, intimate terms, almost as if there was no one else in the room. The bonds between these folks are unselfconscious and easy.

Kayla Rachlin Small, writing in the New York Times, tells the story of meeting and being attracted to someone like herself, a young man with cystic fibrosis. The couple sat at a bar, sitting closer to each other than common sense said they should.  Always before, she would keep her distance, ever-conscious of the risk of passing infections to each other.

“I reached for Thomas’s glass and said, ‘Let me have a sip,’” she recalls. “He did nothing to stop me. The liquid disappeared, and with it went the infection-control protocol that had been drilled into us for years.”

Thomas and Kayla were carrying bacteria harmless to the general population but catastrophic if transmitted to each other. They knew the score. What was that dangerous flirtation all about? “I ache for my vision of quarantine,” Small writes, “an apartment with others like me that has a medicine room instead of a medicine cabinet. Since I was a pre-teenager, I’ve mythologized this community.” Their subsequent intimacy punctuated their defiance and need to connect.

Searching for community, wanting and needing a strong bond, is precisely what that dangerous liaison was all about. It was the burning desire to be with one’s own, to feel normal, just like anybody else. That is why those with serious conditions seek each other out. Maybe we feel less like freaks. Perhaps we simply do not want to travel through perilous territory with anyone who does not understand.
“I believe it is a recognition of the isolation that sickness brings,” says Fred Fisher, President and CEO of the ALS Association, Greater Los Angeles Chapter.  “Patients with ALS are told, ‘You are going to die. Go home and get your affairs in order.’ They want to share that fear.”

One woman with ALS wrote to the ALS Association about the power of PALS, Persons with ALS: “You are the only ones who give us a voice and something we can do with our lives. We have a new sense of purpose, and with that, there is hope.”

In the end, that single word—hope—may explain what community is all about. People reassure, even inspire, each other. In the lives of others, we see our own. And we find acceptance. We are not damaged goods to each other, only human beings in pain.

Word Power

March 1, 2010

When White House Chief of Staff Rahm Emanuel last month characterized a plan by liberal activists to air attack ads opposing conservative Democrats as “retarded,” he did not need the expletive that preceded the term to offend many. The word “retarded,” when used in this way, is unacceptable. Not only does it hurt vulnerable people, but it cheapens us, and Emanuel may well spend a good part of his career apologizing for his callousness.

But let’s be honest here. Who among us has not used the term “retard” among friends, in safe circles, never to be quoted or even attributed? We laugh it off, excusing each other’s bad taste. The most sensitive among us wince and look the other way.

There’s no denying the power of language to define or wound. Almost all of us occasionally use expressions that demean, based on race or gender or mental health.

What do we say then? “Mentally challenged” is a little too politically correct for my taste. “People whose faculties are compromised” seems weak, almost defenseless. Some of these people are defenseless already without us labeling them as such. Historically, they’ve been treated cruelly, even imprisoned, in parts of the United States. We want to believe that times have changed. But the battle is not over.

Unkind language keeps narrow-minded attitudes alive. Old labels feed old prejudices. In our society, one group or another always draws the short straw, and too often it’s the sick, physically and psychologically, who bear the brunt of our linguistic cruelty.

Recently, I let slip with a “you’re crazy,” and was gently lectured by a friend who lives with bipolar disorder and is active in the mental health community.

“You are perpetuating stereotypes,” he said firmly.

“But it was intended to be so benign,” I protested. He just looked me in the eye in silence.

Even words that a generation or two ago were acceptable now reveal public prejudice in all its ugliness. New York City’s respected Hospital for Special Surgery used to be called the Hospital for the Ruptured and Crippled. Georgia’s first state psychiatric facility was the Georgia Lunatic Asylum. You could not make those up.

The name of the Newington Home for Crippled Children in Connecticut, which began its existence as the Newington Home for Incurables, was changed to Connecticut Children’s Medical Center more than a generation ago. When I was growing up, “crippled” always seemed a neutral term to me. It seems harsh now. Maybe any word Charles Dickens used is automatically off limits. Tiny Tim needs a name change fast. Ask a guy on a cane about words. Walk a mile in his prescription shoes.

I am legally blind, a measure of how much of my eyesight has been lost to my MS. That is a legal distinction in virtually every state. Legally sightless? There are no degrees of sightlessness.

And then there are “handicapped” and “disabled.” I know people who find the word handicapped judgmental. My mother thinks disabled means one cannot function at all. I am agnostic on this one. How about “differently-abled”? That’s a popular term now, but it seems silly to me. I think handicaps should be reserved for golfers. Throughout my 25-year battle with MS, I have spent a lot of time proving to myself that I can do. I am abled. So don’t foist your terminology on me. You don’t know me. Leave me out of your word box.

“Words are loaded pistols,” Jean-Paul Sartre wrote. Rahm Emanuel—and the rest of us—would do well to remember that.

An Angry Man

February 22, 2010

I get angry sometimes. Maybe too many times. Illnesses have been hanging around my doorstep for decades. The multiple sclerosis is an old companion and only progresses, robbing me of eyesight, motor skills, really the ability to live as I choose. Progress has been slow and steady, and I do not know my destination.

Buttoning shirts and tying shoes, getting where I need to go—all of life’s little tasks—become epic battles. Looking for an address or just crossing the street become difficult challenges. It sounds petty, but it adds up. I do not complain much. I am just explaining now, I swear. I do swear. Loudly, as I get mad.

Colon cancer attacked me at the end of the last millennium and took its toll. My brush with that killer touched off an anger that rocked the house. Rage is a better word to describe my demeanor at that time, when the crucible brought Hell too close for comfort. I was thrown off kilter as the cancer came calling a second time, piling on top of the multiple sclerosis I had battled for decades. I was roaring.

My wife, Meredith, told me I was hurting my children and her with my outbursts and silent sulking. I became cold and distant from those around me, and they are the ones who love me. Something had to give. With Meredith’s help, I found control and I learned not to point weapons in the house. The damage had been done, but reparations followed, and the love of a family won out.

Still, I am an angry person. The line has been crossed. My dependence on others has increased even as I have fought it with all the strength I could muster. The falls are all too common now, in the street or down the stairs. There is a self-loathing that can neither be denied nor explained. High emotion is directed at myself.

When Meredith comments on my anger, she says it upsets everyone in the family. The boys have gone off to college, so I put our 17-year-old daughter, Lily, on the witness stand. She did not hesitate: “It is not pleasant being around your anger, hearing you yelling.” Does it hurt the family? Lily paused. “Well, it doesn’t help,” she answered, pulling her punches, I thought.

I have always distinguished between blasting those around me and firing into the air. I have long believed that anger is a valid coping mechanism if it is a victimless crime. There may be no such thing. Lily told me that just because my anger is not directed at her doesn’t mean it does not get to her.

At the same time, bottling up feelings serves no one either. Like the bubble under the rug, sooner or later it will pop up. Anger is a piece of the defiance I feel toward my problems. I will not go gentle into that good night. Dylan Thomas’s formula for dying is mine for living.

My father puzzled me with his consistent passive acceptance of his MS. He was forced to leave the practice of medicine, which he loved almost as much as he loved his family. He went from cane to walker to wheelchair. The old man lost his treasured independence. Aren’t you ever angry? I asked him. “Why should I be angry? Things could be worse,” he calmly responded. His mother had the disease before him and never complained either.

Perhaps it is childish to rail at what we cannot control. My friend Larry, who appeared in my book Strong at the Broken Places and has appeared in this column, laughed and offered to send me to anger management school. Larry lives with bipolar disorder. It once wrecked his life, but he somehow found his own road to peace.

“Richard,” he tells me, “service is at the core of peace. My experiences broke me, until I learned to serve others.” Larry’s pull to serve others was intuitive.

I, too, am committed to helping others—in my case, the disabled and chronically ill. That work offers wonderful satisfaction. I wish it brought me peace.

Running Out of Ammunition

February 01, 2010

American medicine is the best in the world—as any American doctor will tell you. They should know, or at least believe. And there is some truth to the claim, particularly if you’re afflicted by some malady—breast cancer, coronary heart disease—whose rate of mortality has declined steadily in the last decade.

But what happens when you have a chronic condition, as I do, for which no good treatment has materialized despite decades of research? Physicians seem to have a lot of ammunition, but more often than not they don’t seem to be hitting the broad side of the barn with whatever they’re firing. My progressive MS long has had the best and brightest shooting blanks. My doctors are good people quickly running out of options.

The interferons did nothing to stop the progress of the illness. IV steroids offer mere moments of slightly enhanced muscle strength that has no lasting power. The steroids threaten bone density, which is especially problematic for some of my friends with MS, who are either cutting back or cutting it out altogether.

I recently embarked on a six-month regimen of chemotherapy, which has weakened me, turned my hair grey or white (depending on who you ask), and transformed me into a fragile fellow who might take a tumble in a strong wind. The process was done at the cancer center in a New York City hospital. The fellowship there was moving. The bald patients in baseball caps provided a stark reminder of how sick others are, and that things always can be worse. Not a bad lesson.

Now I give myself daily injections of a drug intended for another form of MS. A waste of time, I think sometimes. Next up could be IVIG (intravenous immune globulin), a plasma product containing antibodies from thousands of donors. In theory the plasma combo fights invading armies of pathogens. But anyway, this exotic treatment has been denied by my insurance provider.

Doctors cannot be faulted for throwing everything they have at a disease. Sometimes it helps, they say. Usually it does not, I reply. But it sure beats doing nothing, if only for psychological reasons. Frustration knows no end, though I am hardly the only one in this position.

Incurable chronic illnesses can often be managed, sometimes survived, but are never seen in the rearview mirror. Patients’ expectations can be out of whack and highly unrealistic with these conditions. Happy endings are elusive, but we must continue chasing them. Too often, though, we expect better communication from our doctors than we get, especially when it seems that nothing’s working.

“When we do not get answers, and doctors are aloof with us, it’s like we have no say in our treatment,” says my pal Buzz Bay, who has non-Hodgkin’s lymphoma. Buzz’s Indiana doctors are out of ideas; worse yet, they don’t seem to communicate—with him or with each other. “We are fighting against the uncertainty,” Buzz says emphatically. Buzz never used to doubt or even question his doctors. He endured three long rounds of chemotherapy and one of radiation. And then, after a period of quiet, the cancer bared its teeth again.

What Buzz wants—to “look at options and see what’s out there, be it alternative medicine or a second or third opinion”—isn’t so difficult to understand. He’s fighting for his life, and his frustration now borders on anger. “It’s like they’re saying, ‘I’ve done everything I can for you. Bye,’ ” he says.

Long ago I learned never to stop pushing either the limits of medicine or those who dispense it and walk away. We have to be our own advocates. Who better to do that than the person in the hospital bed? I would rather be treated in the U.S. than anywhere else in the world, but I would like to be treated a little bit better.

Unplanned Flight

January 15, 2010

My body stretches forward in perfect flight, parallel to earth, with arms outstretched as if to grab the air. Launch has been involuntary, and the landing pad a sidewalk or street, busy with pedestrians or vehicles or unkind cracks that sent me flying in the first place. Grace is gone, lost with a thud and a gasp, personal effects tumbling gradually down around me.

This is my life: primitive flight, Kitty Hawk revisited. At least the Wright brothers had a goal, a dream to work toward. All I want is to stay on earth, feet planted surely on the ground. But illness has its own plan. I cannot control the disease overtaking me any more than I can choreograph my every misstep and crash landing.

I am not alone in mid-air. Falling is the dread fear of the elderly, the sick. We know when we are at risk because the graceless spills come, no matter how careful we think we are. I have escaped injury beyond the inevitable cuts and bruises, but not so my wounded ego.

Humiliation upon falling is immediate. Damn. Apologies flow rapid-fire, as if the crash was planned and carried out with evil intent. We cannot help it. Illness and disability attack self-esteem, and what more public show of my lack of control can there be? I wish I could guide motion and emotion with a stronger hand, but I lost control long ago.

The problem is more than a wounded ego, however. My sense of self is at stake. I am gratefully aware that I am strong of spirit, if not body. Frailer humans may not be so fortunate.

Emergency rooms have welcomed legions of us veterans of flight, the injured requiring stitches or casts to be made whole again. These people must have little patience for any suggestion that mishaps should be greeted with nonchalance. No big thing. It is a big thing. I have learned to laugh at myself frequently enough, but I want to cry each time an accidental flight sends me spiraling to the ground.

We cannot give up our freedom and mobility, or love of walking, and stay emotionally whole. This is who we are. I will not sit at home because I dare not venture down the street anymore. Admonitions to be careful suggest that any of us is reckless. My mother used to tell me to be careful when I slipped behind the wheel. I chuckled.

Add up the illnesses around us that compromise eyesight or impede mobility. It is a wonder we are not all smashing into each other all the time. Age alone puts us at risk of taking that unwanted header to nowhere.

But life is about choices. Most of us understand risk. We recognize reckless and unacceptable brinksmanship when we see it. The line we must not cross rests at that point when risk is too great and no longer is acceptable. Then, then, perhaps, the unthinkable: a walker.

Just kidding. For me to suggest that those at risk should go for the walker is pure hypocrisy, not to put a fine point on it. My aversion to such devices is well known, though not necessarily sensible. If there is no answer, my answer is this.

I am a believer in pushing the envelope. Keep going until you can go no more. Then take stock of your life. Live with risk until it is time to stop. Know where that line is. Then, grow up and do what you have to. Then teach me to do the same.

In Denial? Not Him

January 1, 2010

A woman I know struggles to walk, even with a cane, but she angrily rejects her diagnosis of multiple sclerosis. Another would rather stagger and sway like a drunk than admit to her illness.

Me? I just don’t talk much about it.

This seems to offend those who think people should wear medical records on the outside of their clothing, as they do designer fashion labels. Years ago, I sat at the edge of the narrow examination table, listening while a neurologist lectured medical students as if I were not even in the neighborhood.

“He is in denial,” the doc announced, gesturing at an ostensibly inanimate object: me, sitting mute. “I deny that,” I blurted out, probably surprising some that I could talk.

The medical students thought I was joking. Actually, I was angry, sick of smug neurologists. I’ve grown tired of doctors long on opinions and short on insight picking apart my approach to an illness that I’ve been battling for decades.

It’s not just the medical community coming down on me. Friends and family have long accused me of being in denial, hiding from reality and failing to address the endless problems that go with multiple sclerosis. To them, my jokes about my illness seem to mean that I am not taking the disease seriously. Apparently I do not cast my eyes down enough and whisper, “Yes, I have MS, your honor. Take me away.”

Do people think I am having too good a time with this incurable degenerative disease that can decimate my life?

Actually, I am not having a very good time at all. Numbness and the frequent inability to move my body at will are no treat. Loss of control is horrifying. Yet I do not spend energy beating my breast over worst-case scenarios. Bathing in grimness seems pointless.

Instead, I have chosen to live a life that assumes limitless possibility. It is not that the disease is not here and taking its toll. However, until proved otherwise, I am in charge and fully intending to win. Call it hubris, but I believe I am cagier than a collection of errant cells.

Let’s get one thing straight: I do not deny I have a debilitating disease with a scary name. But denying the inevitability of the outcome is a different story. That is my prerogative, and I defend it every chance I get. A little bit of magical thinking is a recipe for people like me to get up every day and go back at it. And, yes, climbing back into the ring after taking a licking for days on end does require a certain reservoir of chutzpah. Call it denial. To me it is performance art. Why it irritates others so much is a bit of a mystery.

Second Class Sickness

December 1, 2009

Pat Deegan calls herself a psychiatric survivor. She is by her own reckoning a consumer and ex-patient. She is a lesbian and mother, a Phd. and professor. Pat writes that she was diagnosed with schizophrenia as a teenager, in a turbulent period in which identity was fluid and stigma was a way of life.

Also evolving was Pat’s mental illness, then approaching full blossom. Pat remembers when she was in school and says, “I thought everybody was looking at me. I was paranoid.” She takes the challenge a step further. “Could I sit n a class without freaking out?” Pat thought they would just kick her out of school. “I carried a tape recorder so I could record classes, go home and listen later when I felt safe.” Pat had to deal with paranoid thoughts she was having everyday.

“I would hear voices. There is no way around it.” Pat elaborated. “These were distressing voices. I heard voices. It is how I am. I used to think getting well means no more big vulnerabilities, no giant issues to deal with.” The layers of stigma are complex. They speak to the ignorance of an unkind society. Beyond others, the danger of stigma is that it becomes its own disease and can poison the way we feel about ourselves.

“Society’s messages are embedded in culture, from music to Hollywood spectaculars. We are surrounded by messages of fitting in. Culture struggles with difference, Ann adds. “We are different, broken in the eyes of so many, unable to make choices.” Pat argues that those messages begin to seep in and define how we feel about ourselves. “We internalize these views and begin to hate ourselves. So how do I learn to love myself when we have been devalued and marginalized?”

Pat Deegan says she has learned to accept herself. My trauma history is a gift, and I am a better person for it.” The challenge for us is to open our minds and care. When I wrote Strong at the Broken Places, a book about living with chronic illnesses, my decision to include a mental illness was based on the startling statistic that one in five Americans lives with symptoms of a mental illness.

That choice was intuitive and bloodless. I did not care. The mentally ill fell well-outside my comfort zone. I knew little about conditions I found frightening and regarded those affected as outside he mainstream. I had grown up making fun of these people. That was a piece of backyard culture. I used the word, crazy, not always silently, which spoke volumes, loud and clear, about my own thoughtless discrimination.

The word for brutal behavior toward mental illness still is stigma. Stigma was soft in my mind, though in reality, hard and hurtful. This was an attitude steeped in ignorance.. A marker of all I did not know and how little progress we have made characterizing mental illnesses as a serious chronic condition, no different from MS, certain cancers, and whatever.

Unkind attitudes are the least of the offense of stigma. Employment and opportunity, housing rights and simple inclusion into society are areas of particular cruelty. Acceptance. Ignorance flows into communities, through schools and churches and across back fences.

When I visited the old psychiatric hospital at Milledgeville, Georgia, where more than twenty-five thousand patients (prisoners, if you will, or inmates) are buried anonymously, finally, I got it. My mind opened, so did my heart. Larry Fricks, who was part of the movement to restore abandoned graves, speaks openly about time spent in psychiatric institutions and jails and what it was like to be forced into the back of a police car with no control over his destination.

This had become part of his identity what he saw in the mirror. “People thought my mind, too, was broken, and I could not be trusted.” To the world, Larry was his bipolar disorder. Nothing more. Larry does not use the word, stigma. Putting the word out there only increases the stigma. He finds the term discrimination more appropriate, anyway.

When Clifford Beers, who lived with bipolar disorder his whole life attended Yale at the turn of the twentieth century, he vowed to fight discrimination against the mentally ill in the open. Later, iron shackles that had harnessed people like Beers to institution walls were melted to form the bell that is the symbol of Mental Health America, an off-shoot of an organization Beers fathered so long ago.

Cast from the shackles which bound them” the citation reads,,” this Bell shall ring out for the mentally ill and victory over Mental Illness.”