Personal Accounts: Scrambled Eggs for Brains

I am 63 years old and have never married. I have lived alone, except for the 13 years I lived with a business partner and the past six years, when I have lived with a companion-caregiver. She, by happenstance, is the daughter of my first psychiatrist.

I graduated from a girls' school and went directly to university, destined to take undergraduate studies to enter medicine. That was not to be—I couldn't handle "the stress," but I did graduate with a bachelor of arts in psychiatry and English. Then I took the traditional trip to Europe while contemplating postgraduate studies.

The year was shortened as a result of my having to see a psychiatrist in London. The psychiatrist suggested I fly home and gave me pills to do so. Thus began what I refer to as my "stolen years"—a ten-year gap in my life during which I had three years of electroconvulsive therapy (ECT) followed by seven years of recovery, rediscovery, and thoughts about "what to do" next.

This was the decade during which my friends fell in love, married, had babies, and went to graduate school, while I sat in a room (either in hospital or out) staring through a window—if there was one!—at nothing, a blank slate for life. You could say, "Oh, she's just feeling sorry for herself." And you'd be right. However, I think a dash of self-pity is normal—in the end, it is a fine motivator to get off one's butt.

For me, ECT in the 1960s was a stupefying zap, a brain fry, an invasion of the core of my being, the personal center of my universe. And I never said, "You have my permission to take this from me." I hasten to add that I am not alone in that thought. I do understand that those who administered the procedure, who performed ECT research in the early 1960s, were caught between a rock and a hard place. Sometimes ECT was all that could be offered to a patient like me, because drug therapy was in its infancy—and the medications available had failed. For me, however, ECT was a barbaric abuse of a human being.

The process

In the waiting room, I sit in terror. I wear a hideous striped blue dressing gown that covers only parts of my body. New slippers, though. Who gave me those? No hood to hide behind. I feel as though I'm on my way to the executioner. My body stinks of the familiar nervous sweat I used to love in my locker room days. Other people, dressed the same as I, are all around, waiting for the same event, the only thing we have in common.

I do not look, and neither do they. We are soldiers in a camp, each person selfishly protecting his or her small space of being: a very old and torn vinyl chair. I sneak a peek. Across the room, an older lady. Around the room, people older than I, more women than men. All keep their heads bowed. Me too. I am ashamed. I hate being here. I am so scared. My heart races. I can't hold my knees together in a ladylike way, as I was taught. Who cares? This is definitely not a tea party! I was not invited here; I did not come willingly. I am a captive in a locked ward who trudged down to the bowels of this freaky cold hospital in lockstep with the others, shepherded by a nurse who had a silly old-style white cap on her head and a man in white who looked big and strong and who kept us marching.

I follow the others, who also look glassy eyed and terrified. I don't belong here, I scream inside. What did I do? Why am I here?

I don't know what is to happen to me; I haven't been told a thing. How long will I be gone in that room across the hall? What happens afterward and, worse still, where will I be taken? No one is here to protect and love me, to be with me. I don't understand why anyone would make me do this.

My name is called. Obediently I rise and follow the nurse. My head starts spinning. I don't want to see the equipment; I call it the black box (although it is in fact brown), because it is dark and evil.

I see the big, busy, uneven eyebrows of Dr. A, and his very dark, brown, beady eyes. I feel sick to my stomach, and I feel like I am either peeing or pooping myself. I don't care. I see the eyes of another doctor—Dr. A's son—who is seven years older than me. This is embarrassing. I climb on the table. People take hold of me. I can smell the room. I know an anesthetic is coming. I hate the mask. I hate white, especially men in white coats—doctors, and nurses too, for that matter. White means pain. My pulse races. The jelly that goes on my temples messes my hair, squiggles around. I feel the sodium pentothal injection prick the skin. I taste it, and then comes a weird shudder inside my head. I go into oblivion, surrendering the care of my brain, of myself, to strangers, people I do not trust.

I cannot tell you what they did to me, only what I learned in dribs and drabs much later in life. (Funny, I was never curious enough to ask.) I know that bilateral electrodes were placed on top of the jelly on my temples and that someone flipped a switch, after which my self-worth and memories of my early years (birth to the age of about 15 years) were gone, stolen in a flash of electricity. The first thing I remember in that recovery room was the taste of cotton batten.

I survived! No saliva. A metallic mouth. Nice nurse. Achy legs, neck. Weak. I had a froggy voice, so I couldn't even talk to myself. Soft words. Blotto. If I was living in a hospital, I'd wake up, sometime, in my bed near the window. I went to occupational therapy in a dungeon. All these people, fried like me, doing silly things. I was supposed to knit. Ha! The afghan grew, from a scarf into a jagged rug and then went to the junk heap, I guess.

Unending trooping to the ECT room. Feelings of horror, a zombie. One night a young man in white came to my room. He touched me in all the places one shouldn't. Then he climbed on top of me and mumbled something, as his hand went over my mouth—something like, "This should make you feel better." What was this? Another experiment? Couldn't be! I tell Dr. A, and he looks like he is going to explode. Did I do something wrong? I blot it from my mind. Already I have done so many bad things.

More treatments, more waiting for someone to come and say, "There, there, dear, it'll be over soon." But no one did. The nights were dark, shadows on the walls, people with big rings of jangly keys. But I never went anywhere. Just bed 2 on the psycho ward. Locked in, no one to talk to. Brusque nurses. Did I eat? I don't remember, except for medications, apple juice (which I hate to this day) and Coca-Cola (which I never drank again).

And then one day my father came and took me away, home. I kept looking out the window, crying. What for? The terrible thing is, I had to go back to "that room." I "graduated" to outpatient, and one time I was with my aunt, waiting for the white coats in that room. Who took me home afterward? Did someone pick up my aunt? Or did we go by cab? When did it all end? The spring of 1963, I think.

Reflections on ECT

I had some 60—count 'em, 60—ECT treatments. I should say that I never felt like a victim of ECT. It was all that was available to "help." I know and accept that. "They knew not what they did." I refer to my parents. My mother's father was manic-depressive, his youngest daughter too. The other side of the family had mental illness. Fear gripped them all, and the best way to get rid of fear is to act, put us out of sight. I never did forgive my father for signing the consent form without telling me (asking me?) something—anything. Where were the explanations to help with my fear?

Obviously ECT stole years from me, leaving me with memory loss and gaps in my life. The experience of ECT is as clear to me right now and—pardon the pun—as electrifying as when it first happened in the dark during the winter of 1960. ECT leaves a searing imprint on my brain. The smells and disorientation. My memories of childhood come from a scrapbook I have that shows my mother's early life and a glimpse of mine—a dozen photos, maybe.

I also believe that ECT breeds and fuels self-absorption, even in a "normal" person. But for those with bipolar traits, it can get you into trouble. One cannot help but focus on self—and yet the real job is to turn that focus elsewhere. But who teaches one these "tricks" that can fill a toolkit of recovery and remotivation for a new life post-ECT? It's a revolting merry-go-round of learning, ECT, memory gaps, relearning, readjusting, and reengaging with life and friends but keeping your "secret." My stories stayed with me, and only recently have I divulged even smidgeons to two trusted friends. My stories and scary thoughts were owned by me alone for nearly 40 years.

I still doubt that adequate descriptions of the process and side effects are provided to ECT patients. But I urge health care professionals to fully explain the procedure, the feelings, the emotions, and the recovery of memory so that we have more informed patients and families, so there are fewer "surprises" that can affect a lifetime. Then there is less erasure of self. This is one outcome I missed.

My years after ECT

In the years post-ECT, I did pull myself up by my bootstraps. I grabbed some grit, left Dr. A. and psychiatry behind. It was a brave new world for me. I got into graduate school on a scholarship, specializing in communications. I passed, got a career as a librarian, and then switched directions because I had a passion for writing. I craved the freedom of the no-rules life of the late 1960s.

As the decade changed to the 1970s and new psychotropic medications became available, my experiences could be characterized in one phrase: some good days, some bad days, but it was all that could be done. I passed through a very ugly time when my parents died, my mother of tongue cancer and my father of lung cancer, followed by the death of my beautiful grandmother shortly thereafter. These serial deaths sent me down to the depths of utter despair, and I had a huge "break"—mania, depression, psychosis, obsessive-compulsive behavior, horrible hallucinations, dreadful delusions, identity crisis. Quite frankly, I was crazy, but I hid it—or thought I did. I traveled, worked, and freaked people out, until one night, in another city while on business, I admitted myself to emergency psychiatry and the staff called a new psychiatrist for me, one who coached me home on the aircraft and into whose office I walked the next morning. He told me, softly, gently, and firmly, that I had a dissociative disorder and that life would be difficult, for the rest of my life.

Never did I seriously consider suicide. I was desperate, yes. Disarrayed, cluttered, isolated, failing exhaustive drug therapy, avoiding interaction with friends, threatened by more mental illness. Every little aspect of my life was overwhelmingly failing. And, once again, I was not a traveler in life. Furthermore, I was financially broke.

For several months, my psychiatrist treated me with the older type of drugs, powerful ones. I sat and observed life as it went by, too stoned to know much of what was going on. Then, slowly, I began to sort out the puzzle, again, and pull myself up by my bootstraps, again. Life opened a crack and moments of joy flooded in, enough to convince me I had the energy for another "go" on the train.

Would I submit to ECT now if drug therapy failed me? Truthfully, I don't know. I'd likely try lithium first. God willing, I hope I can escape further ECT. But if I had to submit in order to get another chance to go on living, then I would need a mitt full of information to fully understand the current procedures, risks, and benefits of ECT. Once times 60 is enough.

Ms. McDiarmid lives in Victoria Beach, Manitoba, Canada. Jeffrey L. Geller, M.D., M.P.H., is editor of this column.