Books: Mental Health, Mental Illness, and Love

A selection of books focusing on mental health

• two portraying families coping with mentally ill children
• the lowdown on ADD/ADHD--lots of info, clearly presented
• an interesting, but sad, tale of the victims of "sleeping sickness," a plague that no one remembers
• one man's attacks on psychiatry and mental illness, reissued with new material after 50 years

“Get outta bed! You got sleeping sickness?” When I was a child, sleeping late was my favorite luxury. I didn’t know there really was a disease called “sleeping sickness” — I thought it was a product of my father’s sometimes colorful imagination (like “down the road a piece” will actually give you an idea of how far you must travel). There was never a time that I didn’t like sleeping late and I still feel that sleep is one of life’s finer pleasures. After all, sleep is a restorative; the body heals itself when we are asleep. What could be better than a nice long, uninterrupted sleep?

In Asleep, Molly Caldwell Crosby takes the reader on an unforgettable journey as she details “The forgotten epidemic that remains one of medicine’s greatest mysteries.” That epidemic was encephalitis lethargica and its victims did have long, uninterrupted sleep, but it was neither nice nor peaceful. In the twentieth century, during the teens and twenties, five million people developed this form of encephalitis (swelling of the brain), a third of whom died. Initially they slept, for days, weeks, or even months. They couldn’t awaken, but they were aware. Suddenly sleep doesn’t seem like such a luxury, does it?

The encephalitis lethargica epidemic began contemporaneously with the great influenza pandemic that killed millions in 1918. Unlike the flu, there was no obvious cause. What makes Asleep so timely is that conditions fostering a pandemic are more favorable now than they were in 1918. Global travel is so easy, not just for humans, but for bacteria and viruses, too. If sleeping sickness was the result of influenza, and we’re teetering on the brink of a pandemic (it’s not “if,” but “when”), then what are the chances of a recurrence of a sleeping sickness epidemic?

No one knows exactly what caused the encephalitis epidemic, although there are several theories. Influenza is just one of them. Another theory is that it was a malfunction of the immune system. The unsettling part of the mystery is that the solution has still not been found; there is no known cause, there is no known cure. What is known is that once half those who survived the initial disease recovered, they would continue to suffer. The suffering did not always occur within a short term of the illness, but could surface years, even decades, later, and it affected both the body and the mind.

People would experience a tremor, and then a strange type of paralysis, slowly going into an almost vegetative state with one horrible exception — they were aware. Unable to move or speak, they were trapped inside bodies that had forgotten they were there. The last known victim of encephalitis lethargica died in an institution in 2002, 70 years after being admitted. Imagine 70 years in the dentist’s waiting room, encased in stone, able to hear all that goes on around you but unable to communicate. In many ways, this mystery is a horror story. A profound tale of terror, made even more terrible by the fact that those who lived it could not express it.

Young victims faced another type of horror. After “recovering,” their personalities were irreversibly altered. They became uncontrollable “monsters,” a threat to themselves and those around them. Eventually they would be institutionalized for life. These children knew what they were doing when they “misbehaved” but had no idea why these things happened or how to stop them.

This sleeping sickness was not believed to be a “new” disease when it came to light in the 1920s and, although that epidemic is largely forgotten, is not a dormant disease. Not as widespread as it has been historically, it still claims victims. Crosby points to well known literary works that may have been inspired by outbreaks of encephalitis lethargica, such as Premature Burial and Sleeping Beauty, and cites modern occurrences. (If every time you get a sore throat you think it’s throat cancer, you may not want to read this book.)

Asleep is not just a profile of an epidemic. It offers a vibrant slice of the history of New York, where there were so many victims and so much of the research had taken place. It is also a profile of the various doctors — neurologists, neuropsychiatrists, researchers — who took on the disease and devoted years of their lives attempting to understand and cure it. An extensive bibliography and plethora of notes provide the reader with a hint of how much research was involved in the writing ofAsleep. Yet it never bores. As much as I enjoy a decent medical thriller (think Robin Cook), I was afraid this book might bog down in minutiae; instead it took me to a place I’ve never been before, and kept me there. And Crosby is a far better writer than Cook.

The heart of Asleep lies in the case histories. Crosby introduces the reader to seven people who succumbed, one way or another, to this terrible illness. Accounts of their experiences are sad beyond measure. Reading about them, one feels a tiny particle of the frustration the doctors and researchers who worked so hard to find a cure must have felt. Readers looking for a happy ending won’t find it here.

There is something extravagant about a good book; it is an indulgent treat. When it is proofread and edited professionally, the reader is further delighted. Asleep was, indeed, just such a pleasure.

Bottom Line: Would I buy Asleep? Yes. It is totally absorbing, immensely readable. 

Having ADD is not all fun and games. You knew that already? Did you know there are actually advantages to having ADD? In Answers to Distraction, Drs. Hallowell and Ratey address many of the questions and dilemmas facing those who have ADD or who live with someone who does. And, yes, they even list advantages of the disorder; they include creativity, resourcefulness, tenacity, flexibility, and a good sense of humor.

Hallowell and Ratey wrote Driven to Distraction: Recognizing and Coping with Attention Deficit Disorder from Childhood through Adulthood. After a lecture in Wilmington, Delaware, a woman approached Dr. Hallowell and suggested that there be a follow-up book. Her idea was that he should take the hundreds of index cards on which audience members submitted questions and use them as the basis of another book, using a question and answer approach. Dr. Hallowell proposed the idea to Dr. Ratey and Answers to Distraction was conceived.

Within the pages of Answers to Distraction, Hallowell and Ratey discuss ADD in both adults and children, and give a number of suggestions to help the person with ADD bring order into his or her life. There is helpful information on what ADD is, how to know if someone has it (or to suspect, leave the knowing to the professionals), and how ADD impacts on the sufferer’s life as well as the lives of those around him or her. There are chapters that discuss the brain and genetics, and the diagnosis of ADD.

There are many, many books available about ADD. There are also a lot of myths. Many people feel that ADD is not a real disorder at all, that it’s just a means of selling pharmaceuticals and sedate lively children. I believe it is over-diagnosed, especially by those not qualified to make a diagnosis. Somehow, “overactive” became synonymous with “hyperactive,” and children get incorrectly labeled. It amazes me, as an adult with ADD, that so many people believe that those with ADD are learning disabled or incapable of learning, or that ADD is always marked by hyperactivity. Answers to Distraction dispels many of the myths.Answers to Distraction also describes ODD (Oppositional Defiance Disorder), comparing and contrasting ODD with ADD.

Hallowell and Ratey offer concrete solutions to ADD problems. Some may be expensive, involving the hiring of an organizer or a business manager, but when they explain why that step may be necessary it makes a lot of sense. There are also a number of suggestions for doing some of the things a professional organizer would do.

Answers to Distraction offers information on the various drugs available, as well as treating ADD without drugs. There are chapters specifically relating to children and women. The authors explain the effects of ADD on couples and families, and offer coping advice. There are also chapters on “ADD and Addiction,” and “Aggression and Anger in ADD.” Health care professionals have questions about ADD, and those are answered.

Three brief appendixes offer concise tips for managing ADD. A fourth appendix offers “Where to Go for Help” resources. “Fifty Tips on the Management of Adult ADD” offers easy-to-understand advice such as “Let yourself work under whatever conditions are best for you,” and “Know that it is okay to do two things at once.” These are supported with examples and details. Appendix I is broken down into four sections: “Insight and Education,” “Performance Management,” “Mood Management,” and “Interpersonal Life.”

The second appendix is “Twenty-five Tips on the Management of ADD in Families.” It details the strains ADD places on a family and how they can be handled, and emphasizes how important it is to hope. The third appendix is for couples, “Twenty-five Tips for the Management of ADD in Couples.” It outlines the types of relationships that result from ADD, how to have a healthier relationship, how to communicate, and how to balance expectations with reality. 
No, having ADD is not fun and games, but understanding its effects can help people focus more on the positive aspects in their lives and not be ruled by the negative. Answers to Distraction is must reading for those who have resigned themselves to a life of chaos, and is a valuable addition to the library of anyone trying to better understand this complex disorder.

Bottom Line: Would I buy Answers to Distraction? Yes. Definitely. I recommend it for anyone who needs easily comprehensible information about ADD.

Getting My Night Vision is an intensely personal account of one mother’s experience when her child develops a mental illness. It is a chronicle not of a mentally ill young man but of the journey his mother — and by extension, family — must take to come to terms with his awful disease. Nancy Pizzo Boucher does not so much tell us what was happening, but what she felt over the course of 10 years. Her story is heart-wrenching.

Her son was what many would call a “golden boy.” He was intelligent, had friends, and enjoyed great relationships within his family. During his first semester at Bard, Clem suffered “his first psychotic breakdown.” Boucher and her husband, Richard, went to get Clem; the state in which they found him and their trip home were samples of what was to come. (Interestingly, many mentally ill young adults first exhibit symptoms of their disease when they go away to college.)

Parents differ in the ways they react to their adult children’s mental disorders and the mechanisms they use to cope. Some are deeply involved, some go into denial, and some choose to abandon their children by distancing themselves. Boucher dedicated herself to helping her son. Getting My Night Vision documents her struggle with poetry, notes, letters to doctors, songs, essays, and meditations on hope, stress, and strength. It is neither a narrative, nor a clinical study detailing Clem and his sickness. She also shares some of the strategies that worked for her in both dealing with her burdens and trying to help her son. We learn that maintaining control in the midst of chaos is not always possible, but making the effort is empowering.

In her poem “Why Do You Ask for Permission?,” Boucher asks why, if one has a mentally ill, adult child who does not seek treatment, would one feel the need to get permission, when a person with a child who is bleeding to death would immediately administer or seek aid. It’s an interesting question that illustrates common attitudes about mental disorders.

“The Past Be the Past” is insightful advice for anyone who has suffered a loss or tragedy. “...you need to let the past be the past and start over — often… give tomorrow a chance[,] let the past be the past and start over.” We are struck by the pain of Clem’s illness, not only to him but to all around him. When someone contracts a disease — whether it’s cancer or schizophrenia, diabetes or paranoia — the whole family endures the disease, and “normal” must be redefined. Boucher addresses this in “Our Life”: “our life’s not perfect but we’re just fine.”

Assuming responsibility for the care of a mentally ill individual meant, to the Boucher family, accepting changes in nearly every aspect of their lives. In Getting My Night Vision, Nancy Pizzo Boucher gracefully shares the trials and rewards of doing so.

Bottom Line: Would I buy Getting My Night Vision? Yes.

Perhaps After Her Brain Broke grabs our attention and holds on because the story Susan Inman tells is true. Susan Inman knew her 15-year-old daughter, Molly, was painfully shy and suffered from depression for which she was treated, and Susan expected that she would go through a rebellious stage as do most teenagers. What Susan wasn't  prepared for was Molly's decline into psychosis and the effects it would have on their family.

In their efforts to help their daughter, Susan and her husband spent more than $10,000 on a high-profile therapist who was academically qualified but, on the whole, a total “flake.” As it turns out, this therapist was essentially working against the family and contributing to Molly’s disorder. As Molly worsened, her expensive care was covered by Canadian socialized medicine.

Molly’s first diagnosis was Bipolar Disorder. Treatments are used and discarded, some symptoms alleviated, some worsen. Molly is then diagnosed with Schizoaffective Disorder. Families who have agonized over what is wrong with their children — mentally or physically — can relate to Susan's heartrending experiences as she strives to get an accurate diagnosis, educate themselves, and help their daughter.

After Her Brain Broke serves as a manual for consumers of mental health services and their families. Repeatedly the Inmans are disappointed by an inadequate mental health system (they live in Vancouver). Readers in metropolitan areas may disbelieve the lack of properly trained professionals, resources, support, and services that plagued the Inmans. Living in the beautiful mountains of Western North Carolina, I know that these conditions exist all over. When I asked about mental health services in my county, I was told that there are none; social services workers lament the lack of facilities and practitioners available to their clients. It would be nice to think that there are no services because there is no one to serve. It would also be nice to think I’ll win the lottery tomorrow even though I didn’t buy a ticket.

The family, at times, must have felt like they were being held hostage by a dysfunctional system. They were repeatedly denied information or received partial information, and doctors wouldn’t listen to their observations about and requests for Molly. After Her Brain Broke should be required reading for the mental health field or Psychology 101 students. It’s not that mental health professionals don’t know the impact mental illness has on a family; they allow themselves to be too busy to bother. Some parents seem demanding, but we learn from Susan Inman’s experience that if the family doesn’t stay on top of the situation, it will never get better.

Happily, Inman’s daughter has improved. Nine years of experimenting with pharmaceuticals that didn’t work or did more harm, hospitalizations, bad advice, and improper care finally culminated in a stable life for Molly. On the way, Susan became an activist for families affected by schizophrenia and other mental disorders.

After Her Brain Broke is critical of “traditional,” blame-the-parents psychotherapy which is surprisingly still practiced, and sensitive to how that approach can hurt the mentally ill, as well as their families. Inman is appreciative of the help her family received from doctors and mental health care workers whom she names, and is tactful about the unnamed professionals who were less than helpful, if not negligent. She skillfully documents nine difficult years in the life of a family of survivors, who may have started off with little knowledge of mental illness and its treatment but quickly learned by necessity.

Bottom Line: Would I buy After Her Brain Broke? Yes. My degree is in psychology and I have maintained an active interest in the field.

Just in time for April Fool’s Day, we have the re-release of a book that sets mental health back fifty years. Too bad the author isn’t kidding. In an updated version of his 1961 book, The Myth of Mental Illness, Thomas Szasz again is out to convince the world that there is no such thing as mental illness. Is he nuts or what?

Szasz’s argument would seem wholly based on semantics, if not for the fact that he dismisses some mental disorders, such as “so-called schizophrenia” (which, of course, is suffered by “so-called schizophrenics.”) Don’t worry he’s not out to alienate the mentally ill (who don’t actually exist); he manages to insult everyone working in the mental health field, families of the mentally ill, women, Christians, and Jews, as well as those suffering from mental illness.

Szasz is hung up on the terms “mental illness” and “mental disease.” He uses, as his guideline, a very narrow definition of illness, on which he then bases his attacks. He does not address genetic links to mental disorders, brain chemistry, or much of anything from the past 50 years. What he does discuss is hysteria. Szasz uses hysteria as an example of why there is no such thing as mental illness. He also uses lots of words. Over and over again. There is so much repetition, that we feel we’re being brainwashed. However, at times when an example would clarify a point he makes, it’s not offered.

We also feel that if we were to disagree with Szasz, he would say that’s because we already are brainwashed by the psychiatry establishment. Full of kind words for psychiatrists, he compares them to alchemists and astrologers; he likens the practice of psychiatry to rape and slave-holding. Szasz, obviously suffering from some childhood trauma, repeatedly goes after Freud, attacking his work and intellect. You won’t hear me defending Freud, but c’mon, enough’s enough!

There’s got to be a reason why none of my college psych courses included The Myth of Mental Illness on their reading lists. Szasz admits that his view was/is controversial, and that he was demonized by many people working in the mental health field (which can’t possibly exist — if there’s no such thing as mental illness, how can there be mental health?); he also stands by his original work. He peddles a conspiracy theory that charges government, the courts, doctors, lawyers, hospitals, and assorted health workers with exploiting the healthy.

Szasz seems to regard everyone working with mental disorders as scammers perpetrating a fraud against healthy people. I am not quite sure why a book that takes on hysteria as its major mental disorder is even relevant, unless it’s because Freud worked with hysteria, and this work definitely says, “Down with Freud.” For those who haven’t gotten past Freud-bashing, Szasz is THE MAN.

According to Szasz, hysteria is not an illness of the mind, it is a language. It is the means by which some people express their feelings. Is psychotic behavior a language? Do people who suffer from major mental disorders like schizophrenia and bipolar disorder (which isn’t even listed in the index) get something out of their demons?

I can’t remember ever reading a book that made me as angry as The Myth of Mental Illness. Think of people who live normal lives because they use medications that keep their brains on track. They weren’t ill? When dismissing these disorders, he overlooks advances such as technology that allows doctors to see what is happening inside a living person’s brain, that shows abnormal brain activity in persons exhibiting symptoms of mental disorders.

In describing the diagnosis of mental illness, Szasz states, “The alleged sufferer (especially the ‘psychotic’) considers himself neither sick nor disabled; but others insist that he is both. The role of mental patient is thus often imposed on persons against their will.” Here he totally dismisses people who recognize that they have an illness and proceed to get help. Szasz writes a lot about people who are “declared” insane and who are involuntarily treated. He claims that they are prisoners and are misused. Is that the majority of mentally ill people?

Since psychiatrists treat their patients with “talk therapy,” Szasz seems to think that proves mental disorders are actually communication problems. He also has a lot to say about malingerers, people who fake illnesses (and he complains that people who fake illnesses are believed to be suffering from an illness).

The Myth of Mental Illness is such a disservice to society, I am amazed it has supporters. That Szasz, despite the research, discoveries, and advances in this field in the past fifty years, adamantly defends and clings to every word in his original work is disturbing. The new preface and two bonus essays included in this printing make the same old arguments, and they are tiresome. His concern for civil liberties is admirable, but misplaced. No doubt Szasz is better educated and more experienced than I, but I wouldn’t let him treat a family member for a splinter, no less bipolar disorder or major depression.

Bottom Line: Would I buy this book? NO!!!