Diane Van Deren: The Brain Surgery That Stole Her Memory and Created an Ultra Legend

Diane Van Deren

Diane Van Deren was a professional tennis player when her life was derailed by aggressive epilepsy. The groundbreaking brain surgery that saved her life stripped away her sense of time, but in its place, it forged one of the world’s most elite ultramarathoners. This is the story of a woman for whom every mile is the first.

A Battle Against an Invisible Enemy

Before the world knew her as a running icon, Diane Van Deren was a versatile athlete dominating tennis, golf, and basketball. Her life changed abruptly in 1988 when, at 28 years old and three weeks pregnant, she lost consciousness while driving. The diagnosis was merciless: epilepsy, likely resulting from brain damage caused by a high fever during infancy. For a decade, seizures occurred up to five times a week, paralyzing the daily life of the mother of three.

Diane Van Deren
Photo: Tim Kemple, Kemple Media LLC

At one point, Diane discovered an unusual way to ward off an impending seizure. When she felt the “aura”—a tingling sensation signaling an onset—she would put on her shoes and run. Physical activity allowed her to “run out” of the neurological cycle, becoming her only effective therapy when medications failed. Her husband spent years watching over her at night to ensure she was still breathing, and her children had to learn how to drive early in case their mother had a seizure behind the wheel.

The situation became critical when the seizures began occurring without warning, and the parts of her brain responsible for seizure control grew weaker. Neurosurgeon Mark Spitz explained that the risk of death from sudden cardiac arrest during a seizure was one percent per year. With the mentality of a professional athlete, Diane opted for a radical step: surgery to remove the epileptic focus. It was an all-or-nothing decision, carrying risks of stroke or permanent disability.

The Surgery That Changed Everything

In 1997, Diane underwent a complex, six-hour lobectomy. Surgeons opened her skull to remove a portion of her right temporal lobe and hippocampus—structures the size of a kiwi that appeared gray and damaged on monitors compared to healthy, pink tissue. The procedure was a success; from that day forward, the runner has not experienced a single seizure. However, interfering with such vital areas of the brain brought unexpected side effects.

Diane Van Deren
Photo: The North Face

Shortly after her recovery, Diane discovered a new, almost superhuman capacity for distance. Just two weeks after surgery, she ran 10 miles without pain, and eighteen months later, on a whim, she won her first 50-mile race. As she admits, the surgery gave her a new perspective on life and a sense of freedom she had never known. Stripped of the fear of dying from a seizure, she began pushing the limits of endurance.

Experts, including neuropsychologists, suggested the surgery might have altered how her body processes pain. However, the runner believes it isn’t a lack of pain, but rather the new structure of her consciousness that is the key to her success. The removal of part of the hippocampus permanently impaired her short-term memory and spatial orientation. In the world of ultra-running, where the mind analyzing the passage of time is the greatest enemy, this deficit unexpectedly became her greatest asset.

When the Clock Ceases to Exist

The most fascinating effect of the surgery is that Diane Van Deren lost her sense of the passage of time. In multi-day races, where other competitors struggle with mental exhaustion while counting seconds to the finish line, she remains “locked” in the present. She doesn’t know if she has been running for one hour or two days; she cannot judge how tired she “should” be at any given stage. For her, every moment is its own entity, allowing her to maintain a steady pace without psychological baggage.

Diane Van Deren
Photo: Diane Van Deren

Her lack of short-term memory makes daily life a challenge—she relies on endless notes to remember appointments or her children’s ages. In the wilderness, she easily loses her way because maps are merely a collection of confusing lines to her. During competitions, she manages by using a “breadcrumb” system, leaving pink ribbons or stones on the trail to find her way back if she veers off course. She sometimes jokes that she only runs distances longer than 100 miles because she gets lost so often.

Instead of a watch or a map, Diane relies on rhythm. Internal music plays in her head, dictated by the strike of her feet and steady breathing—two inhales, two exhales. This “flow state” allows her to run for 28 hours without sleep, listening only to the mechanical count of her steps. As Dr. Don Gerber notes, Diane found a way to minimize her disability and pivot it into a state of peak performance.

Minus 50 Degrees and 300 Miles Through the Arctic

The crowning achievement of Van Deren’s career was the 2009 Yukon Arctic Ultra 300. It is considered one of the hardest races in the world, crossing the Arctic wilderness where temperatures drop to minus 50 degrees Celsius. Diane became the first woman in history to finish this grueling distance, pulling a 45-pound sled of gear. During the race, her water supplies froze, forcing her to cover the first 100 miles without drinking, only sucking on frozen bits of food.

The conditions were extreme; many competitors lost fingers and toes to frostbite within the first hour. Thirty miles from the finish, Diane fell into a freezing river when the ice cracked under her weight. Soaked, with boots frozen to her feet, she refused to quit and kept marching. Her advantage over others was simple: if someone told her she had been running for ten days, she would simply smile and say, “Great, let’s get started then!”

Beyond the Arctic, Diane triumphed in races like the Canadian Death Race, a brutal mountain run with massive elevation changes. She was honored as a National Geographic Adventurer of the Year, becoming an ambassador for athletes struggling with neurological limitations. Her story is not just a chronicle of sporting success, but proof that the human brain can adapt to the greatest losses, creating extraordinary new possibilities in their place.

When Loss Becomes Gain

Diane’s story proves that the greatest limitations can become the foundation of strength. In a world where everyone is chasing time, she simply ran—unburdened by the past, without fear of the future. Perhaps that is the true secret of the ultra: forgetting how much is left.

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By Marcin Jutkiewicz | Header photo: The North Face

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