My Lobotomy

by Fleming, Charles

  But then she had a second episode, and it was more serious. She almost died. She wound up in the hospital on a ventilator. They did all the tests and discovered that she had a very advanced case of hardening of the arteries. She had 90 percent blockage in her heart, and only one valve was working properly. She was too unhealthy and weak for them to operate. She was a heavy smoker—two packs a day for years—and she was overweight, and she had a history of heart disease in her family. The doctors told her she had six months to live.

  Rodney and Justin were both in high school. They weren’t doing too good either. They had discovered crystal methamphetamine, and they liked it, and they were both really into it. They had a dealer who lived right down the street. They’d just trot over there when they ran out and get some more.

  Maybe the boys didn’t realize how sick their mother was. Maybe it was the drugs. They didn’t really understand that they were living with a woman who might die at any time. But she was getting weaker and weaker. She had stopped showering because she had this terrible fear of dying in the shower. Her leg was turning black from lack of circulation, and she knew what that meant. She had worked in convalescent hospitals for a long time. She knew a lot about sickness and death.

  But she didn’t seem scared. She had always had this dream when someone close to her was about to die. It was a dream about bread and fish—something about being at work in the hospital kitchen, and running out of bread and not having enough food to feed everyone. She had that dream several times when people she worked with had died. Two of the hospital cooks had died of cancer, and one had had a heart attack, and she had the dream all three times right before they died.

  Now she had the dream again, and she knew it was her turn.

  One day she was worse than usual. The boys were at home. Rodney could see she was in bad shape. He leaned down and held her for a while, but he didn’t realize she was dying until she was dead.

  He and Justin called 911 and the paramedics came right away. They were able to revive her twice. But she couldn’t hold on. She died on the way to the hospital. She was fifty.

  With Chris gone, I had to get serious about taking care of my children. It was time for me to grow up and start living like a regular citizen. But I couldn’t get work in the area I was trained for. I remember thinking, Why did I bother getting this degree when they won’t even give me a job? I might as well drive a bus.

  So that’s what I did. I got a job driving a bus.

  For the first time in my life, it was a real job. Christine’s sister Cindy was working for a company that supplied bus drivers for IBM. She got me in. Soon I was driving a Blue Line bus around the huge IBM plant, taking workers here and there. I liked the work. I had to wear black pants and a white shirt, which I didn’t like so much, but I also got to wear an IBM identification badge. That was pretty snooty.

  It was a long workday every day. I went to work at six in the morning and got off at six at night—if I was lucky. Sometimes I had to work nights, or weekends. The law says you’re not supposed to do that. You’re not allowed to do any kind of driving, for safety reasons, for more than ten hours a day. That’s what those log books that truckers keep are all about, to prove they haven’t driven more than ten hours a day. The authorities don’t want to have sleepy drivers behind the wheel, especially if they’re driving other people around.

  Besides that, I liked the driving. I liked the people. I liked learning to get along with them. This was a new thing for me. In jail, and at Agnews, and at Rancho Linda, even though I was surrounded by people, I didn’t have to get along with them. My size always took care of that for me. Now I had to learn how to deal with people as equals.

  I stayed at IBM for a couple of years. I was making okay money. But I started getting pretty burned out. I was living a pretty unhealthy lifestyle. I didn’t drink or smoke anymore, but I never exercised, and I wasn’t careful about what I ate. The hours were killing me. Sometimes on Friday night, when I was exhausted and ready to take the weekend off, I’d be told I was scheduled to make some more runs on the weekend.

  When I couldn’t take it anymore, I quit and applied for a job with a tour-bus company called Serendipity. I thought it would be better if I was driving a tour bus. The pay was okay, and they seemed to need drivers. I went in and applied on a Friday, and they told me to report for work the next Monday. Then, when I had barely gotten home from the job interview, they called and said I had to come back right away—they already had a run for me.

  That should have told me something. They didn’t have enough drivers. The Serendipity job turned out to be as rough on me as the IBM job. The hours were too long. The stress was too much for me.

  So I quit.

  A little later I started up again at another company, this time an outfit called Durham, which mostly supplied buses for schools. It was a good company. It had a good vibe. The company wasn’t choking on a lot of regulations. But they took the bus driving seriously, and all the drivers were properly licensed, and all the mechanics were ASC-certified.

  Durham ran about eighty or ninety buses every day. They supplied buses for the special-education kids at the San Jose schools and the West Valley schools, and all the buses for the Cambrian Park schools, where my boys went when they were little. They had other buses going out to Monterey and Santa Cruz. It was a busy company.

  Sometimes I drove regular kids, and sometimes I drove special-education kids. I liked the special-ed kids better. The regular kids acted like special-ed kids—or the way you’d think special-ed kids would act, all immature and out of control. They were little maniacs. Fortunately, I was only with them for ten or fifteen minutes at a time. Besides, if you’re six feet seven inches and as big as I am, all you have to do is stand up and the kids get quiet.

  But I did yell at a kid one time, and got his mom mad at me. He was a fifth-grader, and I asked him why he was behaving worse than the kindergarten kids. His mom came in the next day and told me I had embarrassed her son in front of his friends. I told her I thought he should be embarrassed, but I apologized—sort of. I said, “Next time he’s upset, instead of yelling at him in front of his friends, I’ll make an appointment to discuss the problem with him over coffee and doughnuts.” She didn’t like that much.

  I don’t think I identified with the special-ed kids, but I felt for them. I used to look at them and get sad. I’d realize that this little girl was never going to get married or have kids, or that boy was never going to be able to run or jump or play basketball.

  Sometimes I would look at a kid and think, There, but for the grace of God, go I. If those needles had gone a little deeper, or if they’d twirled a little differently one direction or the other, it might have been me riding the short bus.

  Anyway, I liked being around them. I grew attached to them. Remember, with some of these kids, you drive them five days a week, every week, for a whole school year—and then maybe the next year, too. You get to know them, and you get to like them. That wasn’t so true with the regular school kids. I didn’t want to know most of them.

  My life leveled out. I was working. My health was better. My head was clearer. I began to see my life differently. I began to think about my life, and about what had happened to me, in a new way—not so emotional, more analytical.

  This made me helpful to others, just as it made me helpful to myself. When Barbara’s sister Linda was arrested and jailed for drugs, I decided to go visit her. I knew a little about drugs, and I knew a lot about jail. I thought I could help. She was locked up at the Santa Cruz county jail. I arranged to go visit her.

  I knew what it was to be locked up. I knew what you thought about, and what you missed, and what you were afraid of when you were inside. So I was able to talk to her. I told her she had to make a decision. She had to quit drugs. She had to stop throwing her life away. I told her it was up to her to have a decent life. No one was going to give it to her. She had to do it herself.

  I visited her every Sunday, withou
t Barbara ever knowing, for about two months. Something I said must have sunk in. She got out of jail, and went to live with some friends. She quit using drugs. She went to Bethany College in Scotts Valley, and got a degree. She became a drug counselor. She’s still doing that work today.

  As time passed and my life cleared up, I found myself thinking more and more about my childhood. There was a lot I didn’t remember. There was a lot I didn’t understand. In reality, I didn’t really know what had happened to me, or why it had happened to me. I began to ask myself whether I had really been given a lobotomy. I wondered why I wasn’t a vegetable, if what I knew about lobotomies was true. I began to wonder whether I had deserved one, and whose decision it had been to give me one.

  These were questions I had never asked anybody—not my dad, not Lou, not Freeman, not the doctors at Agnews or the counselors at Rancho Linda. But now I started to ask.

  The trouble was, most of the people who knew the answers were gone.

  Grandma Boo had died. Freeman had died. Then Lou died, too, at the beginning of 2000.

  She and my dad had divorced sometime before. He told me that she didn’t like his dog, and that was the last straw. She was mean to his dog. I couldn’t help thinking at the time, She gives your son a lobotomy, and that’s okay. Then she’s mean to your dog and you get a divorce?

  My dad had married again, to Lois.

  Lou had met a man named George Kitasako. He was born in America to parents who had emigrated from Japan and then were placed in internment camps in Wyoming during World War II. I don’t know how he and Lou met, but they were together for ten years. My brother George said they were very happy.

  George Kitasako died in 1988. Lou was on her own for the rest of her life. She never lost her anger at my father for the way things had turned out. My brother George thought she was poisoning his children’s minds against their grandfather, and he didn’t like it. She complained about him so often that he had to ask her to stop.

  Lou spent her last days in a hospital in Portland, Oregon, where she had moved to be near her oldest son, Cleon, after her friend George died. Cleon came to sit with her every day for three months. The nurses told him that she was a very strong woman, and that she probably would not die while he was there. She would die in her own way, when she was alone, when no one was watching.

  That’s what happened. Cleon had been there for part of New Year’s Eve. He was coming back on New Year’s Day. They called him before he arrived, early on January 1, and told him she had died in the night.

  There was an obituary in the Mountain View paper. It said, “Lucille Jackson, a longtime resident of Los Altos and Mountain View, died January 1. A native of San Francisco, she was 80. Mrs. Jackson was a graduate of Mountain View High School. She trained as a medical assistant at Foothill College. She is survived by children, Cleon M. Cox, George Cox, Howard Dully, Brian Dully and Kirk Lee Dully and many grandchildren.”

  I told my dad I wanted to go to her funeral. Even though I had hated her, and I had been afraid of her, she was an important part of my life. She was “Mom” to me longer than my real mother was. I thought it was right that I should go and pay my respects.

  My father saw it differently. He told me I would upset people if I went. He said it would make people think about what had happened to me, and take the focus off Lou and the funeral and the mourning. So, I didn’t go.

  My dad’s health was okay, but then he got sick, too. Or, he found out he was sick, kind of by accident.

  His brother had a massive heart attack and nearly died. My dad went in to have his own heart checked, and found out he was in danger of a heart attack himself. So he had quadruple bypass surgery not long after that.

  He recovered fine. But I realized that he wasn’t going to be around forever. If I was going to find out more about what happened to me, I was going to have to start investigating. I needed to understand my past now. I needed it for my future.

  So I started doing research on the Internet. I’d go to a search engine, and I’d type in the word lobotomy, and I’d start reading. I learned about the operation. I learned that Freeman was the most famous guy who ever did it. I found out why it wasn’t used anymore. I read some case histories on people who’d had lobotomies. But I couldn’t find out anything about lobotomies on children, and I couldn’t find out anything about me.

  Then, one day about a year after I started doing the research, I came upon a reference to a book called Great and Desperate Cures by Elliot S. Valenstein, about all the ways that doctors had tried to cure or treat mental illnesses. There was a lot about lobotomy, and about Freeman.

  And on page 274, there was something about me.

  Valenstein told a story about Freeman going to the Langley Porter Clinic in San Francisco to make a presentation about lobotomy in young adults, and bringing with him three young people—including a twelve-year-old boy—who had been given transorbital lobotomies. It was January 1961. That twelve-year-old boy was me.

  I don’t know why it mattered to me that I found this book. I’d already known I had been to Langley Porter. I’d known Freeman was my doctor. I’d been pretty sure he’d given me a lobotomy. But seeing it in print made it real.

  I kept researching. I started doing searches for lobotomy and children. I figured someone, somewhere—with all the universities and hospitals and newspapers and magazines out there—had to be interested in lobotomy in children. Somebody was probably studying it, and would want to talk to a guy like me.

  I wrote to hospitals that specialized in brain surgeries. I contacted psychiatric hospitals and institutions. Nobody answered. Nobody was interested. Or, if they were, I couldn’t find them. But I did find a Web site called psychosurgery.org, run by a woman named Christine Johnson. She had created the Web site to start a discussion about lobotomy and other methods doctors were using to change people’s personalities by operating on their brains. The Web site had a blog that contained all kinds of information about lobotomy—history, news, events, lawsuits, whatever. (You can go on and learn, like I just did, that at a recent meeting of the Institute of Psychiatry at King’s College in London, transorbital lobotomy was officially awarded the title of worst psychiatric treatment ever conceived. Thank you, King’s College.)

  Christine introduced me, by e-mail, to a woman named Carol Noell. Her mother had been lobotomized. She and Christine were both doing research on the procedure, and on Freeman. They offered to introduce me to people who were interested in lobotomy. One of them, the same Dr. Valenstein who had written about Freeman’s work, finally responded to me. He said I should drop my research and get on with my life. What happened was a long time ago. If you’re okay now, and you’re happy, he said, you should just forget about it.

  That wasn’t a satisfactory answer. So I kept going.

  A little later, Christine told me she had heard about a radio producer who was preparing some kind of radio report on Walter Freeman. She asked if she could give him my name and phone number.

  I was a little hesitant. I wanted information, but I didn’t want to give information. I didn’t want to be part of any radio show. But I told Christine she could give the producer my e-mail address.

  Sometime in the fall of 2003 I was contacted by a person named Piya Kochhar. We chatted. She was nice. She was from India. She told me she was working on this project about Walter Freeman.

  She told me her partner was an important radio producer named Dave Isay. Dave had become fascinated with lobotomies after visiting Greystone, the famous old insane asylum in upstate New York. Then he read a story about Freeman in the Wall Street Journal, written by a man named Jack El-Hai, who was working on a biography of Freeman. Using Jack’s help, Dave and Piya started trying to contact some of Freeman’s former patients. That led him and Piya to Christine, who led them to me.

  I told Piya about my lobotomy. But I also told her I was concerned about participating in a radio show, because of the stigma attached to lobotomy. Piya reassured me. She sa
id, “We’re doing a radio documentary on Walter Freeman, not on you.” But she did want to interview me. She and Dave wanted to come to California to speak with me in person.

  I was flattered. I would have been more flattered if I had known more about her partner, and what kind of work he did.

  I don’t listen to National Public Radio all that much. I’m more of a golden-oldies FM-radio type guy. I hadn’t heard of Sound Portraits, which was Dave’s radio production company. So I didn’t know he had been awarded a Guggenheim Fellowship and a MacArthur Fellowship, and had won four Peabody Awards—which is like winning four Pulitzer Prizes, or four Oscars, for radio—plus a bunch of other awards. Even though he was still a young guy, he was already a kind of legend in radio. He was also the founder of StoryCorps, which is a team of radio producers that tours the country getting ordinary people to tell the dramatic stories of their lives. Since 2003 they’ve helped hundreds of everyday Americans interview their parents, or grandparents, or great-grandparents, and document their personal histories.

  I didn’t know anything about this. All I knew was that there was someone out there who was very, very interested in hearing me talk about my lobotomy. At last, there was someone who cared enough about what happened to me to ask me some intelligent questions. And I was really impressed that they were going to get on a plane and come all the way from New York just to talk to me.

  In the fall of 2003 I was still working for Durham. In 2000, I had started training bus drivers. In 2003, I became state certified as a behind-the-wheel instructor. I was making better money than I’d ever made before, and I liked the work.

  Barbara and I were living in Aptos at the time, in an apartment near the beach that had a nice view of Monterey Bay. In preparation for Dave and Piya’s visit, Barbara and I got the place all cleaned up. We took all the junk from the living room and the dining room and stashed it in the bedroom. We didn’t want them to think we were untidy people. We sat in the window staring out, waiting for them to come. I was so nervous that I had to go sit outside on the landing and wait for them.