A shorter version of the following appeared in Human Life Review, Summer 2002. Copyright 2002 by Mary Meehan.
Recapturing the Joy of Life
Why do so many people today view planned death as a good answer to personal and social problems? Why are they more interested in the mechanics of dying than the adventure of living?
Observers suggest that culprits include nihilistic philosophy, the decline of religious belief, and the worship of autonomy. They note that population-controllers make grim calculations that favor death. So do many people who worry about the high cost of medical care.
While all of these factors are important, commentators overlook another cause. Many people simply find little joy in life, so they do not understand its value to themselves or others. They see life as a stern duty, or an ordeal to be endured, rather than a grand adventure.
Some are in clinical depression. That condition, other severe mental illness, and the problem of nursing homes will be addressed later in this essay. I believe, though, that there is another condition that affects most of us, one that might be called cultural depression. In other words, contemporary culture itself produces unhappiness. It is in many ways a loud, heavy, graceless and tasteless culture--in everything from television and music to manners and architecture.
"It is embarrassing," Peggy Noonan has written, "to live in the most comfortable time in the history of man and not be happy."(1) Yet people do try, sometimes with desperation, to find happiness. Our culture promotes multi-billion-dollar systems of entertainment and "fun"--everything from theme parks to video games and endless television programming. Yet it does not offer much true joy. Indeed, some of the entertainment itself produces depression.
There is an old Southern expression that such-and-such a thing "kills my soul," meaning that it oppresses and burdens the human spirit. If we determine what it is about our culture that kills our souls, we may understand why so many people today do not value life.
What Kills Our Souls?
While answers to this question are necessarily somewhat subjective, many people are likely to give the same ones. Many believe, for example, that electronic bombardment is out of control in our society. It is hard to escape the constant blabbering of television--not only in homes, but in stores, waiting rooms, airports, now even post offices. Television has become the babysitter for people of all ages, at all times, whether or not they want it. It is not a very kind or cheerful babysitter. It speaks unceasingly about murder and mayhem, earthquakes and killer tornadoes, bombing campaigns and wars.
Radio, too, is everywhere with its constant noise, chatter, and commercials. Its talk-show hosts pontificate to millions of people for hours at a time. Even those who agree with them may at times want to mutter, "Well, Dr. Laura, it must be nice to know so much that you answer questions before people have even finished asking them" or "Oh, stop shouting, Rush!"
Telephones, once stationary, now accompany the garrulous wherever they happen to go. You may be standing in a grocery line, dead-tired after a day's work, minding your own business, when the person behind you whips out his cell phone and starts discussing someone's appendicitis. Or you are walking down a street, enjoying the peace of a lovely day, when someone in front of you starts a long and loud conversation. At first you think she is talking to herself; then you realize that she, too, has a cell phone.
Then there are the beepers that go off in the middle of meetings and parties. Computers used to be quiet; but now they, too, can talk. So can automobiles.
Where can we go for genuine peace and quiet? Especially when so many media boom out the thumping, screaming, weeping, wailing and whining noise that has masqueraded as music for so many years? (If this sounds like the view of an old crank, I can only say that I felt the same way thirty years ago, when I was a young crank.) When our "music" is so loud, violent and depressing, should we be surprised that the rest of our culture is, too?
Trivial and tasteless films and television programming also kill our souls. Decades ago, cultural critic William F. Lynch remarked that Hollywood needed to receive "a continuing protest that we may be good or we may be bad but we, as human beings, are not junk in our inner apparatus."(2) And that was before things were truly out of control. Now television shows such a genius for appealing to the worst in us, especially with respect to violence and pornography, that it is hard to imagine how to turn it around. Cable television was supposed to improve the situation; but often it leads to what Peggy Noonan calls "fifty-seven channels and nothing on."(3)
Some fifty years into the TV age, situation-comedy producers still think viewers are so dumb that they need laugh tracks to tell them when to laugh. Television commercials invade our privacy with an obsessive emphasis on personal-hygiene products. Television producers use the human body, in varying stages of undress, to promote any number of products and to hold audiences for boring programs. These practices have done much to coarsen everyday life and language in America.
The powers-that-be in television appear to have little respect for the human body or the human person. It is hard to find on TV any hint of the potential greatness or nobility of human beings.
Personal computers, the major revolution of recent decades, make a wealth of information available to many people. Their word-processing capability is a great aid to writers, lawyers, and office workers. Yet computers, like many other inventions, are a mixed blessing. They are major purveyors of pornography and violence; they pass on much misinformation; and they are hyped so uncritically that many people have developed an unhealthy addiction to them, so that they prefer "virtual reality" to reality itself. (After seeing a piece touting an astronomy Web site for its beautiful views, I thought, "Well, hey, guys, did you ever think of walking outside at night to see the real thing?")
I heard a scientist express a healthier attitude when he said that he views the computer as simply a tool. To this I would add my own conviction that the deep joys of life do not come from sitting alone in a darkened room in front of a machine--whether it is a TV, a computer or, for that matter, a slot machine.
Advertising, on television and online, is a major engine of our economy. It burns commercialism into our very souls. It teaches children how to say, "Gimme!" and "More!" and it pushes their parents to run faster on the treadmill to make more money in order to buy more stuff. And buy more stuff they do: bigger and more expensive cars, houses that resemble palaces, and enough clothing and shoes (for just one person) to outfit a regiment. They spend bundles of money on labor-saving devices; then, fearing health problems from lack of exercise, they put large sums into exercise equipment and fitness centers. It is hard to avoid the impression that we moderns have outsmarted ourselves. Wouldn't it make more sense to forego, say, both the riding lawn mower and the exercise machine--and to get more exercise by pushing an old-fashioned mower? And to do our own cleaning (making it aerobic and doing it to lively music) instead of paying a fitness center for exercise?
The constant pressure to acquire and maintain possessions leave many people feeling exhausted and empty. Deep down, they know the futility of one man's predicted last words: "Call U-Haul. I plan to take it with me."(4)
The frenetic work pace required to buy all the stuff means that many do not enjoy what should be a major advantage of our era: the longer life span. Knowing that our chances of a long life are better than ever before should mean that we can relax and enjoy life, and not feel pressed to accomplish everything right now. We should have more time for family, friends, and the pursuit of happiness. We should be able to get off the treadmill. Contrast our work frenzy with a comment by a young Irish teacher who was visiting the United States: "We in Ireland feel that when God made time He made plenty of it."(5)
There would be a redeeming feature in our frenetic work pace if the possessions it pays for at least had grace and charm. But so often they do not; so often they are heavy and overdone. The "McMansions," which are gobbling up beautiful farmland at an alarming rate, illustrate the problem. Architect Sarah Susanka summed it up this way: "So many houses, so big with so little soul." She described a venture into contemporary suburbia where she felt "as though I was driving through a collection of massive storage containers for people."(6) Many of the containers are far too large for the ground they have; they resemble an elephant who stands on a platform only inches wider than he is. Where older architecture sometimes includes a feature, such as a peak, that echoes another feature in a pleasing way, a McMansion's many peaks are more like hiccups than echoes. The roofs of these monsters are so large and heavy that they add to the over-all sense of oppression.
Sherlock Holmes referred to "that supreme gift of the artist, the knowledge of when to stop."(7) Our architecture today, and much else in our culture, are marked by the lack of that gift. There is a heaviness that kills our souls--in the mini-mansions, the oppressive office buildings, and what someone called the "Pizza Hut churches." We desperately need a light touch.
Advertising also pushes us to substitute the fake for the authentic. In a gas-fed fireplace, the logs are too neatly piled; the flames do not look real; there is no crackling sound; there is no smell of smoke. This old crank wonders: Why bother? What is the point? Some processed foods have so many additives and artificial flavors that they resemble a flask of chemicals. On a coffee vending machine at the Library of Congress, someone once taped a complaint: "This thing hasn't put cream in a cup of coffee in three weeks." Another grumpy scholar added that "it's probably not cream anyway." Others may have thought, "Probably not coffee, either." Vinyl can be made to look like wood, at least from a distance, but it certainly does not feel or smell like it; and in siding, it always looks too even and "perfect." Silk flowers, lacking the fresh, sweet smell of real flowers, give no hint of the great outdoors. Especially when they are dusty.
No Magic Wand, But...
There is no magic wand that we can wave to improve our dreary culture. Yet we can make our own decisions to keep our distance from its worst aspects, and we can try to add to the joy of life for ourselves and others. If enough of us make such decisions, we can change the culture--one person and one family at a time.
What to do about television is a central question. Philosopher Sissela Bok, in Mayhem: Violence as Public Entertainment, notes that screening devices such as the V-chip and Cyber Patrol can help parents protect their children from the worst programs. She promotes school "media literacy" programs that show youngsters how to analyze TV programs and, if so inclined, to act against objectionable ones. Bok also notes possibilities ranging from lobbying TV executives for better programming to boycotting the sponsors of objectionable programs. Her refusal to play the typically passive role of the TV viewer is admirable. "Cultures are not frozen in stone," she writes. "Violence is taught, promoted, glamorized; it can be unlearned, resisted, deglamorized."(8)
On the other hand, there have been many efforts to improve TV in recent decades; but the beast has become ever more violent and sleazy. Perhaps it would have declined even faster had the stout-hearted not mounted some resistance. Yet it is hard to be optimistic about its future.
Michael and Diane Medved have a more radical idea: Drastically reduce family viewing time, and consider getting rid of television altogether. In Saving Childhood, the Medveds note that televised fiction is by no means the only problem. Television news, they say, gives children a "sad, horrific, and harsh view of the world." The medium also encourages impatience (through its quickly-changing images), self-pity (through its commercials' "emphasis on lack and need") and superficiality (through its "preoccupation with glamour and good looks").(9)
The Medveds stress that television is bad for adults as well as children. Referring to the number of years an average person spends watching it, they suggest this tribute for a tombstone: "Here Lies Our Beloved Husband and Father, Who Selflessly Devoted Ten Years of His Life to His TV Set."(10)
Realizing that many people cannot quit TV cold-turkey, the Medveds recommend strategies for reducing its use and phasing it out. Remove all TV sets from bedrooms, they suggest, and then from the living room and kitchen. Confine the monster to just one room, and then make it more difficult to watch. "Cover it with a tablecloth, and top that with a potted plant..."(11)
Another path, and one the Medved family follows, is to have a television set, but no antenna or cable connection. They use their set only to watch videos. The parents carefully screen the videos their three young children watch, and they limit the children to six hours of videos per week. But when I described this system to a mother of four, she responded: "Try that when they're teenagers." A good point; yet no system is perfect, and the Medved one at least gives a fighting chance to alternatives such as playing outdoors and reading books.
The benefits of doing without television, for both individuals and families, are very great: genuine peace and quiet, freedom from non-stop advertising, time to read books and talk to one another. Best of all, perhaps, is the freedom from the social and political indoctrination that television inflicts on everyone who watches it. If only ten or fifteen percent of Americans were free of it, I suspect, they would make our politics far more independent. By showing that no one has to accept what Hollywood deigns to offer, they might even improve the culture.
On the broader problem of too many possessions, environmentalists have a slogan we all should ponder: "Live lightly upon the earth." This is in harmony with religious ideals of simple living and also with the fiscal prudence of the past. There is wisdom in a rhyme I learned from one of my grandmothers: "Eat it up/Wear it out/Make it do/Or do without." She also remarked--and how right she was--that fashion "is just a racket."
Many Americans may secretly envy the simple lifestyle of the Amish people. Every day the Amish prove that, as a clergyman of another faith once said, "We don't need all this stuff." Most of us will not go as far as the Amish in resisting mainstream culture, yet we can all learn from their principled stubbornness. We may not give up automobiles, but most of us do not need huge gas-guzzlers, pick-ups or sports utility vehicles. We may not give up electricity, but we can do without many of the gadgets and machines that it powers. By thus reducing noise and electronic bombardment, we might also reduce headaches, road rage and children's hyperactivity.
Few material things are more important to us than our homes. Probably most of us feel about them the way John Wemmick, the law clerk in Great Expectations, felt about his. Mr. Wemmick's tiny cottage was a true refuge; it looked like a castle and was surrounded by a moat. A simple plank served as his drawbridge. "After I have crossed this bridge," he said, "I hoist it up--so--and cut off the communication." Every night at nine o'clock, he fired a cannon from his little domain, to the delight of his father (the "Aged Parent" or "Aged P."). No office-at-home routine for Wemmick: "...when I come into the Castle, I leave the office behind me."(12)
But Wemmick's castle was a small one. He had not taken on a lifetime of financial strain to pay for it. Many people today would be less stressed and far happier if they bought smaller, less grandiose homes. They might borrow an idea from the late psychologist Bruno Bettelheim, who wrote a book on child-rearing called A Good Enough Parent. He suggested that parents should not try to be perfect, or expect their children to be, since perfection "is not within the grasp of ordinary human beings."(13) Similarly, we can look for the good-enough house, the good-enough car, and so on down the line. Young couples who are just starting out might resist advertising pressures by reflecting that most people are far more impressed by a happy marriage than by a huge house or expensive car. Wealthy couples who are tempted by mini-mansions might consider buying more modest homes and donating the difference to Habitat for Humanity so that poor and working-class people can have homes, too. Such generosity might well give them more contentment than a trophy home would.
We might also be happier with fewer possessions, but more authentic ones: growing our own flowers, instead of buying artificial ones; buying things made of real wood; wearing more cotton; cooking more of our own meals.
We can show children that real life is more interesting and exciting than its electronic and processed versions. We can walk in the woods with them; teach them about bird calls and beaver dams; go canoeing with them; show them how to plant a garden; visit a farm with them; take them out to a ball game; take them to an historic site and tell them about the exciting things that happened there.
"All of this sounds very nice and noble," some may say, "but where are we to find the time to do such things?" Forgive my mentioning the topic again, but getting rid of television provides more than enough time--about 24 hours per week on average, according to the Medveds.(14) Joseph P. Wall, a Philadelphian who has lived without television for nearly 30 years, once compiled a long list of things we can do with the time saved by not watching the one-eyed monster: "Take a walk. Write a letter....Call up an old friend....Go on a picnic....Fix something broken....Visit a lonely old person. Paint a picture. Sing a song....Befriend a small child....Think.... Embroider a quilt....Drive down old country roads....Gaze at the nighttime sky. Watch the sun set in the west."(15)
Doing such things with children and teenagers may give them an interest in lifestyles and careers they otherwise would never consider, ones that may bring them great happiness and enable them to give happiness to others. Lady Bird Johnson, who has done so much to increase the joy of life through wildflowers, said it well: "You should work at the projects that will make your heart sing."(16) We need talented park rangers, florists and nursery owners. We need accomplished farmers, musicians and artists. Great architects, teachers and writers.
Young people should know that they do not have to accept today's culture as given, that they can make a conscious effort to offer something better to their peers and later to their own children. They can follow the example of Frances Hodgson Burnett, author of The Secret Garden, who once said, "With the best that I have in me, I have tried to write more happiness into the world."(17)
New Hope for Mental Patients
In addition to cultural depression, some people must deal with severe clinical depression, manic depression, or schizophrenia. It is hard to imagine greater roadblocks than these to the pursuit of happiness. They have wrecked the lives of many individuals who have them and also have produced great misery for their families.
Yet there is genuine hope for mental patients in new medicines and in programs that provide both practical and psychological support. There is special hope in the fact that recovering mental patients are helping to design and run programs that work and that articulate family members are supporting and publicizing such programs.
Jay Neugeboren, whose brother Robert has struggled for decades with severe mental illness, believes that family members should not assume that only complete cures can enable their loved ones to lead relatively normal lives. Instead, he suggests that "one can recover and reclaim responsibility for one's life without having to be fully cured" and that "one can have a full life while still having symptoms."(18) This is good news indeed, because there are still many unknowns about precise causes of major brain disorders. While some people obtain complete cures, and while there is much promising research, there is no guarantee that total cures will be found for everyone.(19)
Neugeboren tells many success stories in his splendid book, Transforming Madness. One of his favorite examples is Moe Armstrong, an ex-Marine who had a schizophrenic breakdown in Vietnam and spent many years afterwards as a wanderer who was addicted to alcohol and street drugs. People with serious mental illness often "self-medicate" with these substances, which may give temporary relief but generally make their illness worse. Armstrong had "auditory and visual hallucinations, suicidal fits of depression, and wild fits of rage"--plus several marriages and divorces. Finally, though, he was able to leave street drugs and alcohol behind and to earn several university degrees. Sometimes with anti-psychotic drugs, and sometimes without, Armstrong leads a full and productive life: helping other mental patients in his full-time job with the non-profit Vinfen Corporation in Massachusetts, enjoying music, writing poetry and drawing cartoons. He does this despite still having hallucinations and depression at times.
A big, kind, and immensely creative man, Armstrong has hard-earned wisdom about helping people with mental illness. Medical-alert bracelets can help them a great deal, he believes. "There's almost no stigma attached to med bracelets," he notes, "and that way when a cop has to deal with us, he'll know who we are, and can get us back to our residences, or clinics, or to our case managers, and not be dragging us to court or jail." He stresses that there is no one-size-fits-all solution:
"There is no such thing as a schizophrenic or a manic-depressive or a borderline," Moe says. "We're each different, and our problems each need different solutions. Otherwise, it's like trying to put square pegs into round holes."
Moe stops. "And what if I'm a hexagon?" he asks. "A lot of us are hexagons, you know."
...."You can avoid a lot of mistakes if you simply talk with people," Moe says. "You can increase levels of understanding, and--for starters--find out what triggers their breaks by asking them what they think helps, and what they know sets them off. That way you can avoid a lot of things that bring on breakdowns and lengthy hospitalizations."(20)
Shery Mead has done this with a respite center she started in New Hampshire. Like Armstrong, Mead has struggled with severe mental illness for most of her life. A former music teacher and professional guitarist, she started a residence offering short-term stays for people in crisis who want to avoid hospitalization. Such people must, in advance of an emergency, come to the center and formulate their crisis plans. Center staff, themselves recovering mental patients, help them by asking questions such as "When you are bouncing off the walls is it best to leave you alone, or to put an arm around you?" or "When you had breakdowns before, what helped--and what hurt?" or "What do you keep hidden from people when you are in a crisis?"
While it does not offer psychiatric treatment, the center provides a safe and kind place to stay--with friendship and support from people who have "been there." Jay Neugeboren says that it has given people in crisis "somebody to talk with and be with when they wanted--which they never had in hospitals, where mostly they were left alone." It has enabled many people to avoid hospitalization and has given them new hope and new ability to help themselves. It also has saved a significant amount of money for the State of New Hampshire: In 1997, state hospitalization cost about $500 per day per person, while the respite center cost roughly $130 per day.(21)
It is not enough to help mental patients only when they are threatened by breakdowns. They need help in finding and keeping jobs as well. Neugeboren describes another New Hampshire program, run by the West Central Services mental health center, that finds jobs for them and also gives them intensive support on the job. The work is not glamorous-- janitorial and mailroom tasks, for example--but it leads to income and a growth in confidence. "For persons who have been hospitalized and brutalized and out of it for years," a West Central staff member told Neugeboren, "simply being able to think of themselves as something other than mental cases--loons or nuts or schizos--and to have others not think of them this way--can make all the difference."(22)
There is widespread agreement that programs like these should have been in place when, decades ago, states started releasing huge numbers of patients from their mental hospitals. Because most states did not have effective programs in place, many mental patients wound up on the streets, in subway stations, in homeless shelters, in jails and prisons, or out in the woods somewhere. Many are still there.
Observers often have blamed massive deinstitutionalization on lawyers and judges who opposed involuntary commitment even for people who posed a clear danger to themselves or others. Yet, as psychiatrist E. Fuller Torrey notes, state governments were eager to release patients so they could shift costs from their own budgets to federal programs such as Medicaid, Supplemental Security Income (SSI), and food stamps. Dr. Torrey contends that mental patients were "driven out" of state mental hospitals "by the odd alliance of civil liberties lawyers and conservative state legislators who encouraged deinstitutionalization to save state funds." This combination, he says, caused the process "to careen out of control and down a steep embankment, where it remains to this day."(23)
Releasing patients without providing a safety net has led to additional misery for people who already suffer torment from hallucinations, delusions, compulsions and/or paranoia that most of us cannot imagine. It may have been penny-wise but pound-foolish for the states, too. They may have paid more to house severely mentally-ill people in jails or prisons than they would have had to pay for good programs of support in the community and in jobs.
There is a tendency to rely only on "magic bullet" medications to deal with severe brain disorders. Some of the newer drugs are an enormous help to many patients, even leading to "Rip Van Winkle" stories of people who return to relatively normal life after many years in institutions or out on the streets. Some drugs even stop the "voices" that torment so many schizophrenics.(24)
Yet a significant number of mental patients are helped little, if at all, by the new drugs. And, old or new, mood stabilizers and antipsychotic drugs have side effects that may include sedation, great thirst, hair loss, involuntary twitching and grimacing, restlessness and constant pacing, drooling, incontinence, major weight gain, nausea, skin disorders, kidney or liver damage, serious decline in white blood cells, dizziness or headaches.(25) This is one reason, of course, why so many patients stop taking their meds.
Generally speaking, though, the new drugs have fewer and less serious side effects than the old ones. Where side effects are a problem, reduced dosages or substitute drugs may solve them, but careful monitoring is essential. Many patients also need "talk therapy" to help them deal with their illness. As psychologist Kay Jamison wrote about her own battles with manic depression, "psychotherapy heals. It makes some sense of the confusion, reins in the terrifying thoughts and feelings, returns some control and hope and possibility of learning from it all....No pill can help me deal with the problem of not wanting to take pills; likewise, no amount of psychotherapy alone can prevent my manias and depressions. I need both."(26) Many patients also need the kind of consistent support in the community that the Vinfen Corporation, West Central Services, respite centers, and other programs provide.
Many family members, though, cannot pay for such care out of their own pockets without facing bankruptcy in short order. Writer Peter Wyden acknowledged that it "pains and shames me every day" to know that his son Jeff--afflicted with severe mental illness for roughly thirty years--was on welfare and that "his mother and I are reduced to beggars who can't be choosers." Wyden, still working in his seventies, added that: "Until Jeff can produce some income and his need of medical support is greatly reduced, the cost of his care is such that it would soon wipe us out, which would help no one." He stressed that he had "paid hundreds of thousands of dollars to Jeff's doctors and hospitals as long as I could" and that "I'm still supplementing the government efforts with more thousands of my own and working as best I can to get Jeff off his dole."(27)
What We Can Do
The case for government programs to aid those who have severe mental illness is stronger, it seems to me, than for nearly any other kind of government spending. Not only are these people severely disabled, but often their suffering is beyond what most of us can comprehend. Too often, though, programs to help people with severe mental illness are among the first to be cut when times are hard.(28) We need firm resolve to give them first priority instead of last.
This does not mean, of course, that any old program will do. Dr. Torrey, for example, criticizes the federally-funded Community Mental Health Centers that were started in the 1960s as alternatives to state mental hospitals. He says they failed partly because they focused too much on caring for "the worried well" instead of those with severe mental illness.(29) In designing programs, advocates and government leaders should keep in mind a cowboy saying about choice of horses: "Careful what ya rope, ya gotta ride it."(30) But there are plenty of good programs out there, and many good people who know what makes them work.
Involving mental patients themselves in the establishment and running of such programs is a key to their success. So is stability of program and of kind and well-trained staff. People who are adrift on the terrifying seas of mental illness desperately need steady anchors. Some have been harmed almost as much by cold, uncaring staff--or by arbitrary transfers of good staff--as by their illness itself.
Larry Kohn, who directs a Boston University program that trains mental patients in computer skills, exemplifies the kind of staff the best programs have. One of his clients, who has major depression and multiple personality disorder, had to be hospitalized during her computer studies. Kohn visited her several times, and she thought, "He really cares about me....He must believe in me, then, doesn't he?" Later she said, "That made more difference than all the pills. It fired my will to keep going." A man with manic depression said that Kohn "was the first person to make me feel like a person instead of a patient....He was the older brother I never had. There's a lot of terror in psychiatric illness, you see, and it makes all the difference in the world to have someone there with you in the darkness."(31)
Good programs, like the one Larry Kohn runs, help people become as self-sufficient as possible. Most people with severe mental illness, with proper medication and support, can work at least part-time. Many can work full-time at jobs ranging from unskilled labor to extremely demanding and creative work. If properly assisted at first diagnosis and in times of crisis, many will need little public support; some, from wealthy families, may need none at all. Some will recover to the point where they no longer need medicines. But others will always need public support, unless complete cures are found for their brain disorders.
Whether the support is public or private, it must be assured. "I believe that for most of us," Moe Armstrong said, "having a psychiatric disorder is going to require low-cost lifetime maintenance, the way diabetes and other chronic conditions do."(32)
Those of us who do not have such disorders can help those who do by being knowledgeable and consistent advocates on public-policy issues. This might include advocacy on choice of programs ("Careful what ya rope"), support for adequate funding, and a welcome wagon for group homes in neighborhoods. Hostility toward such homes for mental patients has been a major obstacle to good programs.(33)
Friendship and support for mental patients can do a world of good. Extreme loneliness is one of the worst burdens mental patients carry. One woman recalled how her son had been doing fairly well but then had to be rehospitalized. What he received in the way of outside support, she said, was "nothing: no visits, no cards, no calls, no flowers."(34) Friends and family should have responded in the same way they would have if the young man had appendicitis or pneumonia. Yet, despite some improvement in public attitudes, there is still much stigma attached to mental illness-- and much fear of those who have it. While there is reason to fear those who have been violent in the past and now refuse treatment, most mental patients are not violent. Many, in fact, are more terrified of us than we are of them. "We're really harmless and scared for the most part," Moe Armstrong said. "....As a group, especially given all the meds we take, we're about the most frightened, mild-mannered, unthreatening folks you'll ever meet."(35)
Particularly when they receive kindness and support from the public, recovering mental patients have a chance to experience the joy of life. Shery Mead, whose personal interests range from cross-country skiing to triathlons and hang gliding, would like to take current programs even further. "Why isn't there more adventure therapy?" she wonders. "Let's talk more about adventure--about putting more life into our lives--and less about what might go wrong, okay?"(36)
Amen to that.
A Garden of Eden for Seniors
Fiercely independent, the 76-year-old California lady had resisted having help in her home that she really needed. She was in poor health, with high blood pressure and leg infections from a fall. She was not eating properly or taking care of personal hygiene. Then she suddenly lost her home because she hadn't kept up her mortgage payments.
Her daughter, who lived and worked on the East Coast and did not know about the eviction, flew out to see her. Walking in on disaster compounded, the daughter had to make emergency plans right away. Her mother remarked wistfully, "I never thought anything like this could happen to a little old lady like me."(37)
There are, of course, many ways to help aging parents stay in their own homes and relatively independent for a long time. They range from hiring cleaning or bookkeeping assistance and home health aides to obtaining "Lifeline" devices to summon help in emergencies. The trick is to persuade seniors to accept such help when they need it, before emergencies occur.(38)
Many seniors want to retain independence but also want to be free of the burdens of owning detached homes. Condominium, independent-living or assisted-living communities are often good alternatives for them. Sometimes, though, poor health and other problems make a nursing home the only viable alternative. It is an one that many seniors dread as the "last stop" and total loss of independence. Ironically, the overwhelming majority of seniors do not wind up in nursing homes.(39) Yet the dread of living there at the end of their lives robs many older people of the contentment and joys of retirement.
While there are some excellent nursing homes, there are enough mediocre and poor ones to justify seniors' anxiety. And even many of the good homes have an impersonal and regimented atmosphere that kills the soul. "Loneliness, helplessness, and boredom rage as fiercely in good homes as in bad ones," says Dr. William H. Thomas.(40)
Dr. Thomas, medical director of a rural-New York nursing home in the early 1990s, designed a radical solution for the problem. Why not, he asked, turn away from the ultra-medical model and make his nursing home over into a real home? Why not make it something like the Garden of Eden, where seniors could actually enjoy life?
With much help from his colleagues at the Chase Memorial Nursing Home, New Berlin, N.Y., Thomas started to "edenize" the Chase home. He was so successful that many other nursing homes have copied his example.
Edenization involves two major changes. The first is to fill a home with children, pets, plants and flowers. Instead of being occasional visitors or a token presence, they become key features of the nursing-home community. They make the seniors' "habitat" more natural and joyful.
The second change releases the home's staff from what Dr. Thomas calls "a paramilitary command structure," giving them instead a team approach in which they have substantial responsibility for their own work and schedules. This is designed to improve life for both staff and residents. "Tightly restrict workers' daily routines with rules and regulations," Thomas says, "and you can expect the same to be visited on residents....Residents will never have more autonomy or self-respect than that which nursing home managers grant their employees."(41)
A study that compared the edenized Chase home with a traditional nursing home found that Chase had a lower mortality rate and less staff turnover. The infection rate among Chase residents dropped significantly after edenization, and residents needed fewer medicines than before. Thomas, who says that nursing homes often over-medicate residents, was especially happy to see a reduction in the use of mind-altering drugs. One Chase resident, for example, had been taking haloperidol (an antipsychotic drug) because of her agitation. But after she started helping care for the home's many pet birds, she no longer needed the drug. "The daily routine with one hundred parakeets," Thomas reports, "did more to soothe the agitation than the medication did."(42)
Many nursing homes have groups of school children come in occasionally for a Halloween party or to sing Christmas carols. An edenized home, though, goes far beyond this. Chase has its own child care center, an after-school program for students, and a summer camp. The home also hosts meetings of youth groups such as Brownies and Cub Scouts, and it even started a 4-H group for its rural area. The Chase volunteer program offers fifth- and sixth-grade students the chance to spend an entire day in helping with plant and animal care and socializing with the seniors. The hubbub of children, Thomas says, "injects vitality into any environment. Their play, laughter, and song are potent medicines for the elderly."(43)
Resident dogs, cats and parakeets offer the seniors another alternative to loneliness and boredom. Having so many pets around requires careful attention to selection, cleanliness and veterinary care; but Thomas believes the results are well worth the effort. He mentions one resident who was so devoted to her parakeets that, when hospitalized temporarily, she had to be assured that "Sweetie and Tweetie" were well-cared for in her absence so that she herself could recover. Another resident, newly admitted after his wife's death, was so depressed that all normal efforts to help him failed. He stopped walking and eating--until he received two parakeets as companions. They eased his loneliness and restored his interest in life; soon he was able to return to his own home.(44)
Dr. Thomas says that edenization "requires much more change in the heart than in the pocket" and that its costs "are minimal compared with the facility's total budget." For example, in building a wildlife habitat on the grounds, "the more time you have, the less money you need"--and nursing homes "have plenty of time." Thomas also notes the possibility of gaining financial aid from community groups, government agencies or foundations.(45)
I suspect that many more nursing homes will opt for edenization if more of their residents actively work for change, as mental patients are now doing in their sphere. Organizing for change can itself reduce the deadly boredom and passivity that afflicts nursing-home residents. The changes they win will help restore their joy of life.
Many residents, though, are too frail or depressed to speak up on their own behalf. They need help from family and friends, who should be present as visitors and volunteers in the homes in much larger numbers than they now are. "We can flood the nursing homes with volunteers," said H. B. "Corky" Rogers, chaplain of a Denver nursing home. He remarked that one visit at Christmastime "is not where the rubber meets the road in serving."(46)
Flooding the homes with visitors and volunteers could in itself radically improve the residents' quality of life. There would be many more people to take wheelchair users outside on good days, to be special friends of residents who have no family left, and to offer more intellectually-stimulating programs than most homes now have. Mr. Rogers, addressing his fellow-Christians, made a comment that people of other faiths, or no faith, should also think about: "If the Christians across America would commit at least one hour per week of service to a nursing home, the nursing home industry would make a dramatic turn for the better...And, the terrible financial crunch in the industry wouldn't make any difference."(47) Such visitors and volunteers, after learning the ropes, could also be effective change agents within the nursing homes.
Support and Honor the Caregivers
Every effort to aid people with disabilities and to enhance their joy of life should help them be as self-sufficient as possible. Some well-intentioned efforts fail because they are essentially paternalistic. Their designers forgot to ask the intended beneficiaries what they wanted and needed and what they could do to help themselves.
Yet there is, and always will be, a great need for skilled caregivers: nurses, nursing aides and attendants, physical therapists and psychotherapists, social workers, and family members who double as caregivers. In order to do their work well, and to stay with it for the long haul, they need support and honor.
Fair pay and good working conditions for nursing aides should be a high priority. Many of them make little more than the minimum wage, yet their work is among the most difficult--and most important--that anyone does. They should make more money, even if that means that wealthy executives of healthcare companies will make less.
Dr. Thomas's point about showing more respect to staff is well taken. Reducing the bureaucracy at the top and moving away from a "paramilitary command structure" to teamwork may be the best way to improve working conditions of both nurses and nursing aides. They, too, deserve the joy of life.
So do those who care for disabled family members in their homes or serve as tireless advocates for them within the confusing bureaucracy of psychiatric care. Yet family caregivers often suffer from extreme isolation, receiving the occasional pat on the back but very little practical help. "Where's our support?" asked one. "We're not professionals. We haven't taken one single course in this field and yet we're supposed to handle these crises all alone." A man whose son was schizophrenic remarked, "The stigma of a mental disorder causes you to lose many friends. Even family members back off; they're not around very much. I feel shunned by them. Our friends and family have not been supportive."(48)
Home caregivers, no matter how devoted, need a break from their hard work and crushing responsibility. Respite programs--public or private, professional or volunteer--can be lifesavers for them. But they also need more support from other family members. This is a difficult issue, but one that can be addressed successfully.(49)
It would be hard to overstate the value of support from friends and neighbors as well. Visits are important, but getting both the disabled person and the caregiver out into the community is even better. Here we might follow the example of Leslie Girard, who started a "Roll 'em Out" program for a Virginia nursing home several years ago. Realizing that many residents rarely if ever had a chance to go outside, she organized an annual event of volunteers' taking residents out into the sunshine and the neighborhood. She hoped that the program would lead family members to "roll 'em out" on a regular basis.(50) A similar effort is needed for people who are cared for at home and for their caregivers. Community picnics and block parties offer good occasions for this, and others can be found or invented. Sunshine, fresh air and friendship can do wonders for people who have been cooped up inside for a long while.
I suspect that failures to include disabled people and their caregivers in neighborhood events are due partly to oversight and partly to an awkwardness or embarrassment that many of us learned as children. "Never stare at someone who has a handicap," we were told; and, since we were kids, that made us all the more curious, more likely to sneak quick stares (but avoid eye contact), and less likely to be at ease in the presence of disability.
What both children and adults need to hear is that living with a disability is just a different "way of being." As disability-rights activist Mary Jane Owen has said, "developing a few glitches, developing impairments, is not the end of the joy of life...we can enjoy life learning new functions and new ways of being."(51) If we live long enough, all of us will develop glitches and impairments. Those of us who do not have them at the moment should be matter-of-fact in dealing with others' wheelchairs, guide dogs, and so on--offering assistance where needed, but not making a great fuss. The basic guideline should be: "No big deal. This is just another way to get around." A casual approach makes life easier for everyone.
Society generally gets more of what or whom it honors. Given today's celebrity culture, we can expect to see many more rock singers and Hollywood aspirants, more sports heroes and warriors and astronauts--but not many more caregivers who work with those most in need. People asked one nurse who worked in a nursing home, "Why are you wasting your training there?" They asked another, "Honey, why don't you work in a hospital and be a real nurse?"(52)
Those of us who see things differently can help matters by saying, "A nursing home? That's wonderful! You can make a real difference in many people's lives." Or: "You're considering physical therapy as a career? That's one of the most important jobs in the world. Go for it!" Perhaps, in response to the tabloid press and People magazine, we need a magazine called Good People about caregivers and advocates. Perhaps there should be a Nobel Prize for people such as Jay Neugeboren and William Thomas. The next round of Presidential Medals of Freedom should include one for an outstanding nursing aide.(53)
In honoring such people, and in thinking of all the work that remains to be done, we might remember something said by James Huneker, an American writer of the early 1900s. In a happy choice of words, Huneker called himself a "Yea-sayer to life."(54) If we all have this approach, we can do much to recapture the joy of life for ourselves and for others.
1. Peggy Noonan, Life, Liberty and the Pursuit of Happiness (New York: Random House, 1994), 213.
2. William F. Lynch, The Image Industries (New York: Sheed & Ward, 1959), 54.
3. Noonan, op. cit. (n. 1), 175.
4. Robert F. Knautz, quoted in "Doers Profile," Washington Times, 21 Dec. 1995, A-2.
5. Bryan Sammon, quoted in Evening Star, Washington, D.C., 5 Aug. 1971, D-2.
6. Sarah Susanka and Kira Obolensky, The Not So Big House: A Blueprint for the Way We Really Live (Newtown, Conn.: Taunton Press, 1998), 7 & 9.
7. Arthur Conan Doyle, "The Adventure of the Norwood Builder," in The Complete Sherlock Holmes (New York: Doubleday, n.d.), 510.
8. Sissela Bok, Mayhem: Violence as Public Entertainment (Reading, Mass.: Addison-Wesley, 1998), 157.
9. Michael Medved and Diane Medved, Saving Childhood: Protecting Our Children from the National Assault on Innocence (New York: HarperCollins, 1998), 35 & 42-49. The Medveds offer excellent suggestions for giving children a secure and happy childhood.
10. Ibid., 257.
11. Ibid., 255-256.
12. Charles Dickens, Great Expectations (London: Oxford, 1975), 195-197 ff. & 283.
13. With great wisdom, he added that efforts to be a perfect parent with a perfect child "interfere with that lenient response to the imperfections of others, including those of one's child, which alone make good human relations possible." Bruno Bettelheim, A Good Enough Parent: A Book on Child-Rearing (New York: Knopf, 1987), ix. See, also, Brad E. Sachs, The Good Enough Child: How to Have an Imperfect Family and Be Perfectly Satisfied (New York: Quill/HarperCollins, 2001).
14. Medved and Medved, op. cit. (n. 9), 19.
15. Joe (Joseph P.) Wall, personal communication to the author, 8 April 2002; and Joe Wall, quoted by Richard John Neuhaus in First Things, April 2000, 94.
16. Quoted in Paul Hendrickson, "Lady Bird: The Heart and the Hurt," Washington Post, 8 Dec. 1983, D-1. Mrs. Johnson, widow of the late President Lyndon B. Johnson, described her National Wildflower Research Center with engaging modesty: "This is my last hurrah. We're going to have to work awfully hard to make this kite fly. We want to start in Texas and work outward....I don't know how you begin something nationally unless you're a very big person. I'm just a little bitty person." Ibid., D-17.
17. Quoted in Ann Thwaite, Waiting for the Party: the Life of Frances Hodgson Burnett, 1849-1924 (New York: Scribner, 1974), 247.
18. Jay Neugeboren, Transforming Madness: New Lives for People Living with Mental Illness (New York: Morrow, 1999), 27. Written with an unusual blend of realism and hope, this book offers a wealth of information on outstanding advocates and programs.
19. See Nancy C. Andreasen, Brave New Brain: Conquering Mental Illness in the Era of the Genome (New York: Oxford, 2001), for information on current research.
20. Neugeboren, op. cit. (n. 18), 32-40, 45-47, 38, 43 & 50. Armstrong found the antipsychotic drug Risperdal extremely helpful, but had to stop using it because of side effects. After dropping it, he suffered greatly from night terrors, but then had a period of good health when he used exercise, meditation, amino acids and vitamin B-6. A recent report indicates that he again uses antipsychotic medicine; that he avoids movies because they make him "over-amped"; and that he needs "supportive, gentle, loving environments." Ibid., 338-40; and Moe Armstrong, quoted in Sandra G. Boodman, "'Beautiful'--but Not Rare--Recovery," Washington Post "Health" section, 12 Feb. 2002, F-4. Boodman also describes people who have recovered from schizophrenia to the point where they no longer need drugs.
21. Neugeboren, op. cit. (n. 18), 164-165, 173-184 & 340-341.
22. Ibid., 152-162, 159.
23. E. Fuller Torrey, Out of the Shadows: Confronting America's Mental Illness Crisis (New York: Wiley, 1997), 91-109 & 144.
24. Stephen Mark Goldfinger, foreword to Ken Steele and Claire Berman, The Day the Voices Stopped (New York: Basic Books/Perseus, 2001), xi. This book tells the sad but ultimately triumphant story of the late Ken Steele. The voices, which had insulted him and goaded him to suicide attempts for over thirty years, finally stopped after he started taking the drug Risperdal. Ibid., 192-207.
25. E. Fuller Torrey and Michael B. Knable, Surviving Manic Depression: A Manual on Bipolar Disorder for Patients, Families, and Providers (New York: Basic Books/Perseus, 2002), 137-161 & 177-187. It is important for patients and family members to know that some other drugs may cause mental illness in people who otherwise would not have it. Illegal street drugs can produce mania, hallucinations, paranoia or depression; and some prescription drugs can cause mania or depression. Ibid., 63-70. Birth-control pills, fertility drugs and hormone replacement therapy can lead to depression. See Deborah Sichel and Jeanne Watson Driscoll, Women's Moods: What Every Woman Must Know About Hormones, the Brain, and Emotional Health (New York: Morrow, 1999), 24-25, 153, 165-166, 266 & 307. Thus, stopping some drugs--instead of starting others--is sometimes the right answer.
26. Kay Redfield Jamison, An Unquiet Mind: A Memoir of Moods and Madness (New York: Knopf, 1995), 89, (original in italics). "Psychotherapy" does not necessarily mean Freudian psychoanalysis. There are other kinds of therapy more helpful to many patients. Yet many managed care companies want to fund "magic-bullet" medicines but defund the therapy that so often should accompany meds. See Andreasen, op. cit. (n. 19), 339-341. For other problems with managed care in psychiatry, see Torrey, Out of the Shadows (n. 23), 122-128.
27. Peter Wyden, Conquering Schizophrenia: A Father, His Son, and a Medical Breakthrough (New York: Knopf, 1998), 273-275. Note Wyden's poignant remark that "I kept thinking that my long job of raising this son was done. Instead, I am in my seventies, and the task continues." Ibid., 39. His book, based on much research as well as his personal experience, is well-written and valuable.
28. Funding cuts and lack of care sometimes result in suicides. See William Branigin, "Mentally Ill Find More Doors Shut," Washington Post, 24 June 2002, B-1 & B-5.
29. E. Fuller Torrey, Nowhere to Go: The Tragic Odyssey of the Homeless Mentally Ill (New York: Harper & Row, 1989), 25-29, 106-156 & 168-198. Torrey offers a devastating account of the federal government's role.
30. Quoted in Jo Rainbolt, The Last Cowboy: Twilight Era of the Horseback Cowhand, 1900-1940 (Helena, Mon.: American & World Geographic Publishing, 1992), 21.
31. Quoted in Neugeboren, op. cit. (n. 18), 71 & 79.
32. Quoted in ibid., 43.
33. Ibid., 58-64 & 83.
34. Ibid., 150
35. Ibid., 38.
36. Ibid., 163.
37. Marie Spake, quoted in Amanda Spake, "'Nursing Home' Were the Two Words I Dreaded Most to Hear," Washington Post "Health" section, 13 March 1990, 14.
38. For ideas on how to do this, see Claire Berman, Caring for Yourself While Caring for Your Aging Parents: How to Help, How to Survive, 2nd ed., (New York: Holt, 2001); and Grace Lebow and others, Coping With Your Difficult Older Parent: A Guide for Stressed-Out Children (New York: Avon, 1999).
39. Amanda Spake, "Programs to Help Adult Children Care for Parents Are Scarce," Washington Post "Health" section, 13 March 1990, 16.
40. William H. Thomas, Life Worth Living: How Someone You Love Can Still Enjoy Life in a Nursing Home (Acton, Mass.: VanderWyk & Burnham/Publicom, 1996), 93.
41. Ibid., 69-70 & 71-86.
42. Ibid., 56-57; 75; center insert, figure 8; and 47-52.
43. Ibid., 101.
44. Ibid., 58 & 44-45.
45. Ibid., 96, 159 & 168-169. Edenization can reduce costs by reducing staff turnover, infections, and use of medicines. For more information on the theory and practice of the Eden Alternative, see the Internet for: www.edenalt.com.
46. H. B. "Corky" Rogers, Project Compassion for the Elderly (Denver: Good News Communications, 1984), 8, 45 & 73.
47. Ibid., 67 (original in upper case).
48. Sandra Wolfenbarger and "Tom," quoted in Rosalynn Carter and Susan K. Golant, Helping Yourself Help Others: A Book for Caregivers (New York: Times Books/Random House, 1994), 110 & 112.
49. See Berman, op. cit. (n. 38); Joan Hunter Cooper and others, Fourteen Friends' Guide to Eldercaring (Sterling, Va.: Capital Books, 1999); and Carter and Golant, op. cit. (n. 48). These books also suggest other ways to avoid burnout.
50. Christian Toto, "Seniors Get Push Toward Mobility," Washington Times, 1 June 2000, C-4.
51. Mary Jane Owen, telephone interview by the author, tape recording, 31 July 1992.
52. Alice Kaye Moser, "'Wasting' Your Nursing Talents on the Elderly," Washington Post, 9 May 1982, D-3; and "S.C." in "Ann Landers" column, ibid., 16 Jan. 1991, C-6.
53. An example is Vera McGriff, profiled by Lorraine Adams in "A Caregiver Persists Despite the Indignities," ibid., 1 Nov. 1999, A-1 & A-5. People magazine does run occasional profiles of people who help others, but its overwhelming emphasis is on celebrity, glamour and glitz.
54. Quoted in Van Wyck Brooks, The Confident Years: 1885-1915 (New York: Dutton, 1955), 148.