Growing up in the Surgical Maelstrom

Jeff McClintock

I’m now forty, and I’ve done a lot of healing. I am a licensed therapist, and I’ve used my experience—of being made to suffer unnecessarily by treatment for being intersexual—to make patient advocacy an important aspect of my work. I’ve healed a great deal through my involvement with the cancer community, where I was able to help people avoid unnecessary medical interventions. And I have studied sex and sexuality, which has been an important element in coming to a place where I can help others, rather than feeling like I was the only one in the world. It also helped me to realize that I could have successful relationships, including sexual relations. A lot of the defeat and depression that I felt growing up left me when I realized that doctors and parents were wrong. They believed I could not be happy without normal genitals. When I understood that wasn’t true, my life completely changed.

It was my mother’s job to shuttle me back and forth to the hospital. I’ve had sixteen surgeries on my genitals, and they performed ten operations by age ten, pretty regularly once a year. It’s pretty hard on a father if his son is sexually different, and it’s still not easy for my father to discuss.

It was hard on my mother, a typical fifties mom who didn’t work. She was the one who had to deal with these teams of high-powered doctors all the time. She’s told me what it was like when I was born— the doctor didn’t say anything, she looked around and saw the two nurses look down, avoiding eye contact with her. My parents weren’t allowed to see me until the doctors had performed lots of tests, and had made up their minds to assign me as male.

My childhood was filled with pain, surgery, skin grafts, and isolation. I remember when school vacation came, the other kids went somewhere fun. I went to the hospital during vacation, so I wouldn’t miss too much school. When vacation was over, I would return to school, often not yet healed from the latest surgery. Sometimes I went back to school with tubes coming out of me, and stitches and scars, and I couldn’t walk well. They made arrangements for me to use the teacher’s rest room. I have no idea what they told the teachers.

I didn’t know any other children who were like me. I asked doctors questions all the time, but they would never tell me anything except to be careful and don’t complain. They never told me there were any other children like me. Other children went on vacation; I went to the hospital. Children, of course, are quick to pick up on difference, and they were very cruel to me. I felt like a freak, an embarrassment and a burden to my family. But I got the message that I had to pretend everything was OK. The privacy of my hell was something that I had to deal with on my own, and I was very withdrawn and depressed. By the time I was a teenager, I was just hopeless, suicidal. I thought that was a good way out. I let out a little bit of what was going on with me to a friend’s mother who was a psychotherapist. She got me in to see someone who evaluated me and saw that I was seriously suicidal.

Early on I had gotten very, very strong warnings not to let other children see me with my clothes off, and particularly not to let them see my genitals. Of course, it was pretty easy for the other kids to pick up on the fact that for years I didn’t use the kids’ bathroom, or that I couldn’t walk well when we came back from vacations. I was lucky I didn’t have to expose my genitals to the other children in elementary school. By junior high, the psychiatrist helped make it possible for me to participate in mandatory gym classes, but not have to shower with other boys. They would have had a great deal of trouble making sense of or understanding what they would have seen. The doctors insist that you can’t let a child go to school with ambiguous genitals, but the genitals they created were certainly strange-looking.

Each year they performed surgery on me, and I watched and felt how rapidly the surgery would break down each time. They couldn’t have missed it, either —there’s no reason for some of the work that they did on me outside of arrogance or incompetence. I spent many years in surgery whose purpose was to make me pee at the end of my penis. If they had just left my urinary meatus [pee-hole] where it was, at the base of my penis right by the scrotum, I could have avoided at least twelve of those surgeries. And it’s not just my genitals. They would take large pieces of tissue from other parts of my body to try to create a tube of skin for me to pee through, and those areas are scarred as well.

The tube that most men pee through is not made of skin, it’s made of a special kind of tissue that can handle contact with urine, and be continuously moist and warm without breaking down or becoming infected. The tubes that they made for me out of skin from other parts of my body broke down over and over, and I regularly get bladder infections. And I still have to sit to pee. I have never been without fistulae [holes in the penis where the surgery has broken down], and I’ve had the entire tube replaced twice, with large skin grafts. If they had just let me pee sitting down, neither I nor my family would have had to suffer all of that—the expense, the pain, the repeated surgeries, the drugs, the repeated tissue breakdowns and urine leaks. It would have been just fine to have a penis that peed out of the bottom instead of the top, and didn’t have the feeling damaged.

The promise that you will be able to pee standing up is just plain false, especially when the urinary meatus is at the bottom of the penis. Such a large skin graft can’t heal with the blood supply that is available in the genitals. I believe they know that, but it seems that genital appearance and the promise of normalcy are more important to young parents than a clear-headed acceptance of reality.