Personal Accounts: Mistaken Identity

In 1991 I was given a diagnosis of severe depression and was hospitalized. My psychiatrist insisted that this course of action was necessary because I couldn't promise him I wouldn't try to kill myself. I was transferred quickly from his office to an emergency room at a hospital in the suburbs of Boston.

As soon as I became a psychiatric patient, I lost my voice entirely. My opinions about my treatment went unheard, and the psychiatric milieu of infantilization and brutal routine worsened my condition. I'd been depressed before entering, but paranoia was a new symptom cultured by the psychiatric ward. No one can have their activities recorded, their moods monitored, and their food intake regimented without becoming a little paranoid.

My experience in the hospital was a reenactment of the trauma of my childhood. Suddenly stripped of my power to self-determine, a victim of strange and arbitrary rules, I was objectified and robbed of my humanity. I was a pinned beetle. I was allowed to cry only in my room, allowed to go outside only with permission. The hospital was like some hideous, never-ending flashback, and I was made to live as a child again, powerless and without words in a land of chaos.

Compounding the emotional turmoil, serious cognitive problems plagued me. For the previous year and a half I'd been experiencing memory loss, confusion, and an inability to concentrate, and even though I'd complained about these problems ad nauseam, my doctors continued to insist that they were common symptoms of depression, nothing more.

I was very aware of and deeply embarrassed by my cognitive deficits on the unit. I couldn't make toast, which was a big problem for the occupational therapist, who insisted I was acting out, being deliberately contrary and rebellious. The truth was, I didn't know which direction to put the bread in and was much too embarrassed to ask. Then there was the question of how long the bread should toast. I was sure I'd set the hospital on fire.

The shower was anathema. I didn't know how the soap worked. I thought there was an order for washing my body parts and that I'd forgotten it. Once in the shower, I'd remember that I'd forgotten to bring a towel, and I'd have to put my clothes back on and go in search of my room, which I could never seem to find. And the washing machine terrified me: all those forbidding buttons.

I was afraid that if the inpatient psychiatric staff caught wind of my deficits, they'd keep me in the hospital longer—or worse, send me to a locked unit, of which I was very afraid. From the other patients—some of them paranoid—I'd learned that if you didn't get better in five weeks, they'd transfer you to a locked ward in a state hospital. I'd heard about those places, and I wasn't going to be locked up in one of them. (This seemingly paranoid belief was not entirely unfounded. Even in 1991, insurance coverage generally ran out long before a person was well enough to leave the hospital. In many cases, patients didn't have the resources to stay in a private hospital, so if they were still suicidal or unable to live with relatives, they would be transferred to a state institution.)

My left eye was clouding over. I'd gone to see an optometrist in Harvard Square about a year before, who told me it was "stress." Now that I was on a psychiatric unit, my complaints of visual blurring continued to go unheard: "Don't worry. Visual symptoms and cognitive slowing are common symptoms of depression. Once the medication starts working, those symptoms should abate." Incredibly, what no one recognized—nor apparently thought to consider—was that the depression itself was a symptom of something much larger and equally life threatening, something considerably beyond the scope of what my psychiatric caretakers could manage.

I tried to write about what was happening to me, but this demanded enormous intellectual effort, and I was bitterly exhausted, unable to sleep but for an hour or two a night, and then only fitfully. Fortunately I could still draw, so I started making drawings of brains with black blobs in them, skulls with mismatched eyeballs. I developed the paranoid notion that I had a brain tumor. The drawings gave me this idea, and I couldn't let go of it. Although it wasn't easy, I mustered the courage to tell my inpatient psychiatrist about my brain tumor. Her response: "I think you might benefit from a course of Haldol." I refused her offer and asked for an eye patch instead—the blurriness in my left eye was giving me headaches.

It took me a long time to be heard on the unit, and ultimately it was not me that the cadre of psychiatric professionals listened to, but my harried husband, a man beleaguered by my incessant calls, often six or seven a day, so frequent he was having trouble at work. "I have a brain tumor" was my refrain. No amount of solace or belligerent insistence to the contrary could dissuade my "paranoid ideation." My husband finally called my psychiatrist at the hospital and insisted she run a test—any test, just so they could prove to me that I didn't have a brain tumor. The psychiatrist was reluctant at first but eventually relented, reasoning that perhaps a test was warranted, given that I'd been having vision problems. (She did confess to my husband that she thought it a bit odd that I had blurring in only one eye.) She sent me to the hospital ophthalmologist, who ran an optical field test. Security managed my transfer to and from the psychiatric wing—a good thing, because I never would have found it on my own.

The optical field test revealed significant pressure on my left optic nerve, accounting for my cloudy vision and possibly indicative of a cerebral mass. A computerized axial tomography (CAT) scan was ordered, then magnetic resonance imaging (MRI). The MRI was definitive. A large pituitary tumor was discovered—some seven centimeters in diameter. Not only was the tumor pressing on my left optic nerve, but it was also choking off my carotid arteries, strangling my hypothalamus, and meandering into my frontal lobes. I was suffering pituitary mayhem, and the pressure on my brain was enormous, no doubt accounting for my exhaustion and insomnia.

Suddenly it all made sense. At that moment, when the tumor was discovered, I made a strange existential shift from psychiatric patient to made-for-television-movie heroine. All my sins were forgiven. I was no longer a pitiful, voiceless pariah but a courageous woman facing a life-threatening disease. (Oddly, I still managed to blame myself, believing that God had given me the tumor for having been an ungrateful child.)

I was quickly transferred to a well-respected medical hospital in Boston for tumor resection. A one-inch cut was made under my upper lip, and access to my brain was gained through my sinus cavity. Another cut was made in the tissue that separates sinus from brain, and the tumor was removed chunk by chunk. It took about six hours.

The surgery was successful, although because of the consistency of the tumor—hard and rubbery—the surgeons could not remove it safely from around my carotids. I would have to have radiation. Still, everyone exhaled. I'd survived the surgery.

No one suspected anything unusual. At the time, I was being given strong doses of dexamethasone to reduce the swelling in my brain, a necessary preoperative regimen. Because of a too-rapid withdrawal from this powerful steroid postsurgically, I became floridly psychotic. (Whether the withdrawal was ordered by my endocrinologist or was the result of an error on the nurse's part is unclear from my records.) No one had informed me of the symptoms of brain trauma following surgery—or, if they had, I'd forgotten—so I assumed that my profound disorientation and inability to add, spell, or cognate were permanent outcomes of the surgery.

I could understand only sentences with simple subject-verb-object constructions: no parentheticals or dependent clauses, no irony or humor. The weirdest—and most painful—part was that I recognized this deficit. I believed that the doctors had performed a lobotomy to protect me from the truth: that the tumor was inoperable. I wanted very badly to die.

Needing a psychiatrist, and somehow finding the courage to ask for one, I was met with a nurse's perplexed look: "This is a surgical ward. There are no psychiatrists available to you." No one suspected my suicidality. After all, who tries to kill themselves after having survived brain surgery? A priest would have to do. Unfortunately, the priest was more accustomed to giving last rites than counseling potential suicides, so I accepted these rites and attempted to jump out of a ninth-floor window.

I was found before completing the job and was rushed immediately to a major psychiatric facility with a locked unit—not the same institution I'd been in before—in four-point restraints. Four days out of brain surgery, and I was no longer being seen as a medical patient. Somehow the information that I'd just undergone brain surgery was not transferred to the psychiatric hospital until about a week after my intake. In the meantime, I was seen as a routine psychotic, to the extent that psychosis can be considered routine.

That night, after my admission to the locked psychiatric unit, I tried to strangle myself with my shoelaces. I pulled the fire alarm on the unit—it was an emergency, after all. That didn't win me any friends. In fact, it landed me in the "quiet room" (what a horrible euphemism!), where I was left for 24 hours with no toilet, no food, no water. They took away my glasses and my shoelaces. I had to pee on the floor and was humiliated by the staff for doing so. I was incarcerated in "one of America's greatest psychiatric hospitals," and this shouldn't have been happening.

I drew the logical conclusion that everyone had abandoned me: my husband, my therapist, my family. This would be my life, alone in a room with a solitary blue foam mattress and a barred window, left to die hungry in my own filth. And I was very hungry. (When I'd arrived on the unit, no one had shown me where the kitchen was or notified me when the food came over from the cafeteria.)

I tried to make a deal with God that if he'd let me out of this horrible place, I'd agree to become a happy bag lady who never complained, eating discarded fast food with my raccoon friends. (Even now, 11 years later, I am appalled that no one told me that my incarceration in the quiet room was only temporary and wasn't meant as punishment, and that no one asked me how I was and what I feared.)

I was eventually let out of the quiet room and fed. Six weeks later I was allowed to leave the inpatient unit for good, on the condition that I participate in an outpatient day program administered by the same hospital. After a few months I returned to the world in a state that almost passed for normalcy.

I could have sued a number of doctors for malpractice, but in the end it was not the doctors and their often callous and irresponsible treatment that I blamed, but rather the way in which doctors—and all of us—have been trained to think about illness. The Cartesian paradigm that splits mind from body not only is incorrect—and most professionals understand this—but does violence to patients who display both corporeal and psychiatric symptoms. I've never been able to understand why it is not more fully acknowledged—and is even taken for granted—that all illnesses have both psychiatric and corporeal components. Who does not feel at least a little bit vulnerable when one's body is not what it should be?

In a mental hospital, there is no place to exercise unless you have privileges, which can take a while to procure. The combination of stale air, poor lighting, and generalized abuse in the form of overactive medications and toxic verbiage stultifies even the most resilient patients. Boredom is endemic, infantilization and humiliation the rule. That people leave "better off" than when they come in rarely has to do with the miracles of medication or the skill of psychiatrists or cognitive psychologists but rather with the fact that acute self-destructiveness tends to resolve on its own over time. The psychiatric institution is effective insofar as it is able to contain suicidality long enough for the impulse to die of its own accord.

Many people, including myself, come out of psychiatric hospitals with symptoms created by our incarceration, posttraumatic stress disorder being the most common. A mental hospital is a war zone without enemy or cause; it is definitely no place to heal. Craziness begets craziness, and patients feed one another's paranoia. It's easy to get overstimulated by other people's problems, because you're already supersaturated with your own—if you weren't, you wouldn't be there.

In the United States, one can be either a psychiatric patient or a medical patient, but not both. This reality is one of the reasons that so many avoidable tragedies occur in our medical and psychiatric institutions, although this reality is something that many doctors and hospital administrators are deeply committed to dismissing. When heart attacks occur in psychiatric hospitals, they are routinely mistaken for panic attacks. Physical pain becomes invisible. Pleas for help become evidence of "acting out," so patients quietly endure their suffering to avoid the humiliating accusation of being labeled a "troublemaker" (in the case of male patients) or a "hysteric-borderline" (in the case of females).

Psychiatric patients suffer needlessly in body and mind because of the erroneous notion that mind can be separated from body. There is also the belief that illnesses of the mind have moral weight, whereas illnesses of the brain do not: Diseases of the mind will always be the fault of the people who contain them; diseases of the body will never be the fault of the minds that control them. The separateness of mind and body is such a pervasive notion that the question most commonly asked of me when I left the hospital was "Did the tumor cause the depression?" This question is, of course, ludicrous. The answer is, "No one knows; it seems just as likely that depression caused the tumor."

We know that the paradigm of splitting mind from body is incorrect, yet we seem to be unable to extricate it from either our language or our moral code. If mind and body cannot be separated, then why are our institutions bifurcated into medical and psychiatric? Why do we persist with the language of antiquated dualism? Why can we not grasp the notion that the body is the mind—inseparable, amoral, and blameless in the face of disease?