The Noonday Demon (67 page)

I did not tell the man that his wife was on the same medication as he; nor did I tell the wife that her husband would have been able to understand her situation only too well. I didn’t tell either of them that living with secrets is taxing, and that their depression was probably exacerbated by shame. I didn’t say that a marriage in which basic information is not exchanged is weak. I did, however, tell each of them that depression is often hereditary and that they should look to their children. I commended openness as an obligation to the next generation.

Recent dramatic statements by a broad range of celebrities have certainly helped to destigmatize depression. If Tipper Gore and Mike Wallace and William Styron can all talk about being depressed, then perhaps less visible people too can talk about it. With the publication of this book, I forsake an expedient privacy. I would have to say, however, that talking about my depression has made it easier to bear the illness and easier to forestall its return. I’d recommend coming out about depression. Having secrets is burdensome and exhausting, and deciding exactly when to convey the information you’ve kept in check is really troublesome.

It is also astonishing but true that no matter what you say about your depression, people don’t really believe you unless you seem acutely depressed as they look at and talk to you. I am good at masking my mood states; as a psychiatrist once said to me, I am “painfully over-socialized.” Nonetheless, I was startled when a social acquaintance of mine called me to say that he was going through AA and wanted to make restitution to me for his sometime coldness, which was, he said, the consequence not of snobbery but of a deep jealously of my “perfect-seeming” life. I did not go into my life’s innumerable imperfections, but I did ask him how he could say he envied me my
New Yorker
article, express interest in the progress of this book, and still think my life seemed perfect. “I know you were depressed at one point,” he said, “but it doesn’t seem to have had any effect on you.” I proposed that it had in fact changed and determined the whole rest of my life, but I could tell my words were not getting through. He had never seen me cowering in bed and he couldn’t make any sense of the image. My privacy was bewilderingly inviolate. An editor from the
New Yorker
recently told me that I’d
never really been depressed. I protested that people who have never been depressed don’t tend to pretend about it, but he was not to be persuaded. “C’mon,” he said. “What the hell do you have to be depressed about?” I was swallowed up by my recovery. My history and my ongoing intermittent episodes seemed quite irrelevant; and that I had publicly stated that I was on antidepressants seemed not to faze him. This is the strange flip side of stigma. “I don’t buy into this whole depression business,” he said to me. It was as though I and the people I wrote about were conspiring to wrest more than our share of sympathy from the world. I’ve run into this paranoia again and again, and it still astonishes me. No one ever told my grandmother that she didn’t really have heart disease. No one says that increasing rates of skin cancer are in the public imagination. But depression is so scary and unpleasant that many people would just as soon deny the disease and repudiate its sufferers.

Still, there is a fine line between being open and being tiresome. It’s a downer to talk about depression, and nothing is more boring than a person who talks about his own suffering all the time. When you are depressed, you sort of can’t control yourself and your depression is all that’s happening to you; but that doesn’t mean that depression has to be your primary topic of conversation for the rest of your life. I have often heard people say, “It took years for me to be able to tell my psychiatrist that . . .” and have thought that it is madness to repeat at cocktails the things you tell your psychiatrist.

Prejudice, rooted largely in insecurity, still exists. Driving with some acquaintances recently, I passed a well-known hospital. “Oh, look,” said one of them. “That’s where Isabel got herself electrocuted.” And he moved his left index finger around his ear in a sign for crazy. All my activist impulses rising toward the surface, I asked what exactly had happened to Isabel and found, as I’d anticipated, that she had received ECT at the hospital in question. “She must have had a hard time,” I said, attempting to defend the poor girl without being too earnest. “Think how shocking having shock must be.” He burst out laughing. “I nearly gave myself electroshock treatments the other day when I was trying to fix my wife’s hair dryer,” he said. I am a great believer in a sense of humor and I was not really offended, but I did try—and fail—to imagine our going past a hospital at which Isabel might have had chemotherapy and making similar jokes.

ADA (the Americans with Disabilities Act), the congressional fiat that granted significant accommodation to the handicapped, requires that employers not stigmatize the mentally ill. This brings up tough questions, many of which have been under public consideration since
Listening to Prozac.
Should your boss be able to require that you take
antidepressants if you are not performing up to speed? If you become withdrawn, should he be able to fire you for not doing what is appropriate to the situation? It is true that people with illness under control should not be prevented from doing such work as they can. On the other hand, the ugly truth is that paraplegics cannot work as baggage handlers and fat girls can’t be supermodels. If I employed someone who regularly lapsed into depression, I’d be more than a little bit frustrated. The prejudice and the pragmatics interact to the disadvantage of those with depression, blatantly in some areas and less blatantly in others. The Federal Aviation Administration does not permit people suffering from depression to pilot commercially; if a pilot goes on an antidepressant, he must retire. The effect of this is probably to cause large numbers of depressed pilots to avoid treatment, and I would guess that passengers are a lot less safe than they would be with pilots on Prozac. That being said, one can pull through most acute crises; medication has given much strength; but there are boundaries on resilience. I would not vote for a fragile president. I wish this weren’t so. It would be nice to see the world run by someone who would understand through personal experience what I and others like me have been through. I couldn’t be president, and it would be a disaster for the world if I were to try. The few exceptions to this rule—Abraham Lincoln, or Winston Churchill, each of whom suffered from depression—use their anxiety and their concern as the basis for their leadership, but that requires a truly remarkable personality and a particular brand of depression that is not disabling at crucial times.

On the other hand, depression does not make someone useless. When Paul Bailey Mason and I first made contact, he had been suffering from depression for most of his life; in fact, it was the fiftieth anniversary of his first round of ECT. He had led a traumatized life; his mother, when he presented “disciplinary problems” in adolescence, had got some friendly Klansmen to attack him. Later, he was involuntarily committed to an asylum and while there was nearly beaten to death; he finally managed to escape during a riot by patients. He has been on full-scale social security disability payments for almost twenty years. During that time, he has earned two master’s degrees. In his late sixties, afflicted with the twin burdens of his age and his medical history, he sought help finding work and was told by officials at every level that there was no work for someone like him and that he shouldn’t bother. I know how productive a worker Mason was because I read the long stream of letters he sent to rehabilitative services in South Carolina, where he lives, and to the governor’s office, and to just about anyone else he could think of, all of which he copied to me. On medication, he seemed to function well most of the time. The sheer number of words was overwhelming. Mason was told
that the jobs available to people in his situation were all manual labor, and that if he wanted a job using his mind, he was on his own. Taking occasional teaching jobs, most of which involved horrendous commutes from his home, he managed to keep body and soul together while he wrote hundreds and hundreds of pages arguing his case, explaining himself, calling out for help—all of which earned him a handful of form letters. Reading them, I doubt that Paul’s letters were ever even passed up to someone who might have been able to help him. “Depression creates its own prison,” he wrote to me. “I sit here in an apartment I can barely cope with and fight for help finding a job. When I can’t bear to be alone, as on Christmas Day last year, I go and ride the subway around Atlanta. It’s the closest I can come to other people under present circumstances.” His sentiments were echoed by many others I met. One woman who felt socially isolated by her professional failures wrote, “I am finally suffocating under the weight of not being employed.”

Richard Baron is a sometime board member of the International Association of Psychosocial Rehabilitation Services (IAPSRS), the organization for nonmedical psychiatric workers, which currently has a membership of nearly two thousand. Depressed people themselves, he writes, “have begun to voice deep concerns about the emptiness of their lives in the community without the ego-building, social-binding, and income-producing benefits of a job, demonstrating how solidly work persists as a fundamental part of the recovery process.” An analysis of current aid programs reveals a terrible problem with them. Those depressed people who can get themselves classed as disabled in the United States are eligible for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI); they also qualify, in general, for Medicaid, which pays for what tend to be expensive ongoing treatments. People who receive SSDI and SSI are afraid of taking a job lest they lose them; indeed, less than half a percent of those who receive SSDI or SSI give them up to reenter the workforce. “The subculture of serious mental illness has no ‘folk wisdom,’ ” writes Baron, “as unshakable (and thoroughly wrong) as the notion that people who return to work will immediately lose all their SSI benefits and never be able to regain them. The mental health system acknowledges the importance of employment as a goal, but remains paralyzed in its ability to fund rehabilitation services.”

Though the most immediately applicable research in mental health has been done within the pharmaceutical industry, in the United States the brain’s most primitive mechanisms are revealed at the National Institute of Mental Health (NIMH), located on a vast, sprawling campus in
Bethesda, Maryland. It is one of twenty-three line items within the budget of the National Institutes of Health (NIH); another line item is for the Substance Abuse and Mental Health Services Administration (SAMHSA), which does some depression-related work but is not part of the NIMH. At both the NIMH and SAMHSA, the instant benefit of applied research is subsidiary to an increase in human knowledge through basic research. “If you can unlock the secrets of the disease,” says Representative John Porter pragmatically, “you can do a great deal to prevent the disease. If you put money into research, you can ultimately save lives and curtail misery. People are beginning to see that the benefits are very large compared to the investment being made.”

In the early nineties, the U.S. Congress asked six prominent Nobel Prize winners in the sciences each to nominate two subjects for major research. Five of the six chose the brain. Congress declared the span from 1990 to 2000 the “Decade of the Brain” and devoted vast resources to brain research. “This will be remembered as one of the single most important edicts Congress passed to advance human knowledge about itself,” says Representative Bob Wise (Democrat, West Virginia). During the decade of the brain, mental illness funding increased enormously, and “people started to understand that mental illness is an illness like other illnesses,” Porter says. “People used to see mental illness as a bottomless pit that devoured money, requiring interminable psychiatric treatment, the meter always running, the progress in doubt. The new medicines changed all that. Now, however, I worry that we begin to look away from people who are not helped by or cannot be helped by the drugs.”

Within the U.S. government, Senator Paul Wellstone (Democrat, Minnesota) and Senator Pete Domenici (Republican, New Mexico) have been the most outspoken advocates of improvements in mental health law. For the moment, the political struggle at center stage concerns insurance parity. Even Americans who have comprehensive health coverage often have limited provisions for mental health; in fact, over 75 percent of health plans in the United States offer less coverage for mental health complaints than for other illnesses. At both the lifetime and the annual level, your mental health insurance may be capped at less than 5 percent of the cap for “regular” illnesses. Since the beginning of 1998, it has not been legal for U.S. companies with more than fifty employees that offer health plans to have reduced caps on mental health coverage, but those companies can still have a higher copay (the amount the patient has to pay as opposed to what the insurer pays) for mental illness than for other complaints, so that the diseases are still, in effect, not comparably covered. “That most policies would not provide coverage for my daughter with depression on the same basis as if she had epilepsy is simply
incredible,” says Laurie Flynn, who heads the National Alliance for the Mentally Ill, the country’s leading advocacy group. “I have a favorable copayment for rheumatoid arthritis because that’s a ‘real’ illness, and my daughter’s illness isn’t? Mental health is very hard to define; few people have perfect mental health. Our society has no obligation, and cannot afford, to offer me insurance coverage for my personal happiness. But mental illness is much more straightforward. It’s joining the train of disenfranchised groups that are rising up and claiming their fair share.” The Americans with Disabilities Act (ADA) protects those with “mental and physical disabilities,” but mental illness is still a severe barrier to employment, and heavy with stigma. “There’s still a sense that if you were a really strong person,” says Flynn, “this wouldn’t have happened to you. If you were a really clean-living, well-raised, properly motivated person, it wouldn’t happen.”