What It's Like to Live with Half a Brain

Amanda Caldwell is a 22-year-old creative writing major at Long Beach City College. She's a DJ and program director at the campus radio station, co-founder of a club for students with disabilities, and sits on student government. She has goals of becoming a professional author and won awards in high school for her fiction. She's also living with half a brain.

"People don't really see my disability," Caldwell told me over the phone after writing one of her final exams for the semester. "When they see me walking and they notice that there's something different, they think I've maybe had a stroke. They don't know that I've had half of my brain removed."

Caldwell isn't an anomaly. There are people living with parts, halves, or more of their brains removed all around the US. Some are master's degree-wielding speech pathologists. Others are champion ultra-long-distance runners. There are lots of different reasons why people might need partial brain resections (when you surgically remove all or part of an organ), and hundreds of people in this country who show just how surprisingly resilient the human brain can be even when part of it is removed.

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"In broad strokes, there are two principal reasons why someone may lose chunks of their brain: disease or injury," Gary Mathern, a pediatric neurosurgeon at UCLA who has performed multiple hemispherectomies, told me over the phone. Head injuries can sometimes cause severe enough damage that a part of the brain stops functioning, he said, but when it comes to surgically removing a piece of brain, disease is the primary driver.

Often, it's one of a handful of rare, seizure-causing disorders that lead to the decision to perform a brain resection. These disorders often affect young children and become so severe that cutting out the affected part of the brain is the only option.

"The seizures can get to the point where they're so frequent that the kid's not developing properly because their brain is never in a rested state where it's not seizing, or recovering from a seizure," Mathern told me. "The only reasonable option at that point is to cut out those parts of the brain producing the seizures, which often can be very large sections of the brain. We're allowing the rest of the brain the opportunity to develop."

That was the case for Caldwell. Throughout her childhood, she suffered seizures, often three or four a day, due to a stroke she had before she was born. She was diagnosed with Cerebral Palsy, then epilepsy, and tried out multiple kinds of medications, including drug trials. But the seizures starting getting more frequent, and longer. One day when she was five, on the last day of kindergarten, she slipped into a dramatic seizure that lasted for more than 20 minutes and only ended after paramedics had rushed her to the hospital.

"It was the 'Hollywood seizure.' I was shaking. I was foaming at the mouth," Caldwell said. Though she doesn't remember the event, her parents have described it to her. "It was really bad."

At that point, she was taken off of the latest trial drug and her parents became more desperate for a solution, before the seizures eclipsed Caldwell entirely. Under the advice of their doctors, the decision was made to go forward with the only remaining treatment: a hemispherectomy. Shortly after her sixth birthday, surgeons would open up Caldwell's skull, detach her two hemispheres, and take one side out. That was in 1998, and she hasn't had a seizure since.

But her recovery wasn't without its struggles. Because she had her left hemisphere removed, Caldwell had to teach the right side of her brain how to move the right side of her body. Now she can walk and run (though she says with a bit of a noticeable impediment) and can move her right arm (but not her hand) and has full range of motion in her leg and ankle (and sometimes she can even wiggle her right foot's toes). Remarkably, she didn't have to re-learn how to speak, as many left-side hemispherectomy patients do.

"I don't think I had any issues in that area," she told me. "Because I had my stroke while I was still in the womb, my neurologist said all of the wiring had already been moved to the right side of my brain. My language skills and all that were already developed on my right side."

And Caldwell certainly has no struggles with language now—in our conversation she talks a mile a minute, jumping from different subjects and circling back, cracking jokes. But she does have difficulty with some other tasks. Caldwell told me she cries easily, can have trouble with complicated math, and needs the help of a tutor for some of her studies. It's all part of the complicated, confusing, and elusive hive that is the human brain: there's still so much we don't know about its capacity to heal.

That's what drove Seth Wohlberg to create the R.E. Children's Project, a charity that provides funding for research to find a cure for Rasmussen's encephalitis—a rare neurological disease that also causes recurring seizures and is often treated with a hemispherectomy. Wohlberg's own daughter was diagnosed with Rasmussen's at age 10 and had a hemispherectomy. Though she's doing well now seven years later, Wohlberg thought more could be done to find a cure that wouldn't require such invasive surgery.

"I think it's a miracle that somebody can live with half a brain, but it's a dual-edged sword," he told me over the phone. "This is a terrible thing that someone has to do to themselves. Imagine having a cut on your hand and someone says 'I'll fix that for you by taking off your arm.'"

The R.E. Children's Project has raised money for research and orchestrated tissue donations from patients who have had a hemisphere removed, but because it's such a rare disease, it's difficult to get either.

And not everyone who has part of their brain removed recovers as well as Caldwell. Mathern told me there's a range of possible outcomes when taking out a piece of the brain, and often the results surprise even neurosurgery experts. It makes it difficult to determine just how much of the brain you can remove and still live a relatively normal, healthy life.

The age when the resection takes place matters, too, because the younger a child is, the more plastic their brain is. As we get older, our brains ability to make up for lacking parts becomes harder to predict. It's something Mathern is learning first-hand: he suffered a stroke last fall, affecting his right frontal lobe and impairing his fine motor skills.

"I'm in the middle of the story. I don't know what the end point's going to be. I don't know if I'm going to be able to return to work," Mathern said. "It's frustrating because I'm not able to do all the things I was capable of doing before and at the same time it's a bit scary because I don't know what I'm going to be able to get back."

But Mathern knows, perhaps better than anyone, that his brain may surprise him yet.

Jacked In is a series about brains and technology. Follow along here.