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, without 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 said, “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.

When they pulled into the parking lot and started walking up, I remember being a little shocked. Here was this big tall guy, carrying a notepad or something, and behind him was this small woman, carrying a huge amount of radio gear. To a man of my generation, that’s just not right. You don’t make the girl carry everything. I didn’t realize Piya was working for Dave, that she was in charge of all the radio equipment, and this was her job.

They had brought gifts. Somewhere in our discussion I must have told Piya that Barbara collected snow globes, because she had brought one for her. We invited them in and we all sat around the living room, talking, getting to know each other.

In person, just like on the phone, Piya was comfortable to be with. Dave was not as easy. He was very nice, but he had this habit of always moving his eyes around, always looking around the room, like he was searching for something. It made me a little uneasy.

Then, when it was time to do the interview, Dave said he wanted to see our bedroom. That’s where all the junk was. I didn’t want him to go in there. But he said the interview had to be done there, because that was always the quietest room in the house. So we went in. Dave sat in a chair at the side of the bed. Barbara and I sat on the bed. Piya sat at the foot of the bed, holding a big boom microphone.

I don’t remember what Dave asked me. I know I talked about my operation, and my family, and how things went wrong in my family. I was nervous. Dave had a notebook on his lap, and he would make notes with a pencil, and sometimes he’d interrupt me and ask a question. “How did that make you feel?” or “What happened after that?”

After a while we took a break. We decided to get some dinner. We went to a good Mexican place right near our house. After dinner, Dave and Piya went back to their hotel.

Sometime in the night after that dinner, they made a decision. They loved my story. They loved my voice. They decided to drop Walter Freeman as the subject of their documentary. They were going to make their documentary about me.

The next day, they played to my vanity. They told me I had such a beautiful voice and such good radio “presence” that they wanted to tell the story of Walter Freeman by telling the story of my lobotomy. They wanted me to interview all the doctors, nurses, and patients they could find. I would be the voice on the radio interviewing all these people.

I agreed. But I had a few rules. I would not let them use my last name. I would not get on an airplane. I would not interview my father.

They agreed to my conditions. We began. And almost immediately I had to change my mind about the rules I had set down.

First, they wanted me to come to Atlanta, to interview a woman and her mother. The mother had been a lobotomy patient, and the woman had agreed to let her be interviewed. But I didn’t want to fly.

They also wanted me to interview my father. Piya kept harping on this, but in a nice way. She’d say, “We really think we should interview your dad,” or, “We really think it would be good if you interviewed your dad.” I just kept saying, “I don’t want to do that.” I never refused, exactly, and she never insisted. I just kept saying that I didn’t want to do it, and she kept coming back to it.

My problem was that I didn’t want my dad to get upset with me. Our relationship was not great, but at least I had him in my life again. I was afraid that if I told him about the documentary he’d get mad and disown me, or threaten to never speak to me again.

In early 2004, Dave and Piya called with some important news. They had contacted George Washington University in Washington, D.C., where Freeman had donated all his professional papers, and discovered that the archives were open to anyone who had been one of Freeman’s patients. I could ask to see everything Freeman had on me—notes, documents, photographs, everything. But I had to come to Washington in person. The records couldn’t be released any other way. I had to come right away, and I had to fly.

I really didn’t want to. Not because I don’t like flying. It’s because I’m afraid to fly. Really afraid.

I’ve always felt that way. So, because I’m not stupid enough to do things that scare me, I had never been on a plane. But I’ve seen the airplane crashes on TV. I figured, if I’m not on the plane, I don’t have to worry about it crashing.

The other problem is I’m a little claustrophobic. I don’t like to be in confined spaces. And a guy my size on an airplane is automatically in a confined space. I wouldn’t be able to curl up and go to sleep, like some people do when they fly. So that means I would be wide awake, and scared, every minute of the flight.

I know it’s not completely logical. But that doesn’t change the way I feel. When I’m on the ground, in a car or on a bus or a train, I feel like I’m in control. I can get out. Plus, I understand how they work. I don’t understand the plane. I just can’t understand the logic of this giant building up in the air, flying around with people in it. It doesn’t make sense.

But Dave and Piya were insisting. They needed me in Washington, D.C., to get to the archives. They needed me in Atlanta, Georgia, to do that interview. There wasn’t time for me to take the train. There was also the question of the expense. Dave’s production company had frequent flier miles with Delta Airlines, so I could fly to the East Coast and back for free. If I was going to take the train, and get a sleeper, and get my meals taken care of, it would take three days and a lot of money to do what we could do in a few hours, and for free, on an airplane.

I didn’t care about any of that. But I cared about the archives. I wanted to see what was in there. I wanted to see it so badly that I even agreed to get on an airplane.

I tried to psych myself into thinking it was all going to be okay. Why wouldn’t it be okay? People fly all the time. It was going to be fine.

It wasn’t fine. Barbara and I went to the airport. We had planned to take the red-eye to Atlanta, so I wouldn’t have to look out the window and see how high up we were. I took some melatonin to help me sleep, and some Xanax. Neither one of them worked. I was wide awake and scared to death the whole trip.

We landed about five in the morning. I understood why they called it the red-eye.

But I didn’t have too much time to feel sorry for myself. Dave and Piya met us at the hotel lobby early the next morning. We had some breakfast and went to work.

Our first interview was with Ann Krubsack, a woman who had been lobotomized by Freeman at Doctors General Hospital a week after me.

To my surprise, and disappointment, her feelings about Freeman, and her lobotomy, were all completely positive. This little, round, silver-haired woman thought he was a great man and the operation was a wonderful thing.

We got something different during the second interview, with Carol Noell.

She’s the woman I had met on the Internet a couple of years before, through the Web site psychosurgery.org. In person, she was an attractive, light-haired woman. She suffered from MS, so she moved a little slowly.

She had suffered from a lot more than that as a child. Her mother, Anna Ruth, was lobotomized by Freeman in 1950, after being treated for a series of crippling headaches. The procedure cured Carol’s mother of her headaches. It also left her with the mind of a child. And, like a child, she was carefree and without anxiety of any kind. Carol never had a real mother after that.

Piya set up the microphones and recording equipment. I started asking the questions I had worked out with Dave. Carol was easy to interview. She had a story to tell about her mother, and she was ready to tell it.

“Did she worry about stuff?” Carol said. “Nope. Didn’t worry. Just as Freeman promised…”

But she also had “no social graces,” Carol said. If she was out walking and saw people getting together for a party, or sitting down to dinner, she’d walk right into their home and make herself comfortable—even if they were people she didn’t even know.

“She was the greatest playmate we ever had, and the best friend, and we all loved her to death,” Carol said. “But I never called her Mama, or Mommy, or anything. I never even thought of her as my mother, or as my daughter’s grandmother. And I never even took my daughter to see her….”

It was a heartbreaking story, and a very emotional interview for me. This was the first time I had met someone whose life had been damaged, like mine, by a lobotomy. It wasn’t Carol’s surgery, but it affected every day of her life after it took place.

We left Carol Noell and drove the rest of the day to Birmingham, Alabama. By the time we got there, we were all exhausted. We got rooms in a Holiday Inn, and after dinner finally got some rest.

The next morning we met with Rebecca Welch. Her mother, Anita McGee, had been suffering from severe postpartum depression when she was lobotomized by Freeman in 1953. The lobotomy had relieved her depression, but left her distant and disconnected.

“She’s there, but she’s not there,” Rebecca said to me.

Rebecca’s mother had lived in a nursing home for many years, and Rebecca had dutifully visited her, every single week. But she never told anyone about her mother. She never talked about the lobotomy, like it was some kind of shameful secret. In fact, in the nineteen years she had been married, Rebecca had never once taken her husband to meet her mother.

We were scheduled to meet Rebecca at the nursing home. When we arrived, we were taken into a little side room where Rebecca and her husband were waiting. Rebecca was a slender blonde with long curly hair and a strong southern accent. We said our hellos, and spent a few minutes getting to know each other, while Dave and Piya prepared their recording equipment.

Then they wheeled Rebecca’s mother in on a sort of gurney.

She was in bad shape. She tried to talk, but she couldn’t. When she spoke, it sounded like she was gargling. I couldn’t understand anything she said. We tried to talk a little but it was no good.

So Rebecca had her sing something instead. She said, “What was that song, Mom? Remember?”

Together, they began singing “You Are My Sunshine.”

After her mother had been taken away, Rebecca said, “I don’t know who could have perceived this procedure as a miracle cure. The only thing I see that came out of it was hurt and pain for a lot of people.”

I asked her why she had waited so many years to bring her husband to meet her mother.

“It’s been so painful that I’ve tried to stay very far away from it for a long time,” she said. “Kind of like, if you leave it alone, it will go away. But it never goes away.”

“What has changed your mind about hiding from it?”

“You,” she said, and started to cry.

We both broke down. Through her tears, Rebecca told me I was helping people just by standing up and asking the questions I was asking.

“Do you know how many people you’re championing?”

I hadn’t thought of it that way. But hearing her say it helped me believe I was doing something worthwhile. I had been a little leery at times. Was I doing this the right way, going so public with it? Was I doing it for the right reasons? Was I being unfair, or vindictive?

Rebecca said, “You’re like all those people who were locked away, who could not go on this quest, who could not ask all these questions. You’re doing it for all of them.”

That was very moving to me. We sat together and cried for long enough that Barbara started to feel a little left out. Rebecca and I had made a sort of bond. Like me, and like Carol, she had lost her childhood—not to her own lobotomy, but to her mother’s. And like us she had this sense of pain and loss and outrage. And now she finally had met someone who understood that.

I felt stronger about the whole project after that interview. I felt like I could go through anything to get it finished if I was doing it in a way that was going to help other people. It would also heal me in ways I never could have seen ahead of time.

I felt strong enough to get back on an airplane, even. We drove the whole way back to Atlanta from Birmingham that afternoon, with barely enough time to ditch the rental car and get to the airport. We flew up to Washington, D.C., that night.