Gusts whip once morest the racing bike, four degrees, rain. Maximilian Schwarzhuber’s jersey is stuck to his body, water is beading from his knees along the black carbon prostheses to his shoes. Schwarzhuber braces himself once morest the wind, fights 217 kilometers and 1,550 meters in altitude, from Crailsheim in Baden-Württemberg to Oberstdorf in Bavaria. The test stage is just under a fifth of the tour that he wants to tackle this Friday, May 6th. “After just a hundred meters I was fed up,” he says.
From Flensburg to Oberstdorf, across Germany, 1001 kilometers – in 48 hours. That is the goal, his and that of the extreme athlete Achim Heukemes. Three breaks for sleeping are planned, each 20 minutes. What distinguishes the two: Heukemes is 70 years old, Schwarzhuber 29. One has competed in the Ironman ten times, the other pedals with prostheses. Five years ago, Schwarzhuber had both lower legs amputated – voluntarily.
“The last time I looked like a living corpse. My body was finished.”
Schwarzhuber sits in the light-flooded dining area of his parents’ house in Wolnzach, Upper Bavaria. The large windows around the wooden benches look out into the green garden. He put his prostheses on a chair. He was two years old when he woke up following a nap and might no longer move his legs. His mother remembers lifting him out of bed: “He might only crawl and mightn’t walk.” The boy goes to the hospital. One misdiagnosis following another follows. The doctors suspect a tumor in the spinal cord. You say your son only has a year to live.
The inflammation eats through the nerve tracts. From the feet to the legs to the hips, so that at times he can no longer sit. The symptoms are typical of Guillain-Barré syndrome, which involves inflammatory changes in the nervous system. If the paralysis extends to the heart or to the respiratory and swallowing muscles, it can be fatal. From then on, Schwarzhuber learned to fight.
The paralysis is receding, but he hardly feels anything below his knees. He walked like Forrest Gump, says Schwarzhuber. Still, he has the urge to move. Sometimes he has to use a wheelchair and watches his brothers or other children romping around. “It was pure torture back then,” he says. He is bullied at school and later gets depressed. His father watches the Ironman on TV. The athletes swim 3.862 kilometers, cycle 180.246 kilometers and run 42.195 kilometers. Schwarzhuber dreams of taking part there.
“Why not just cut the problem off?” Schwarzhuber thinks – but everyone advises once morest it
But due to the lack of sensitivity in his feet, he has to go to the hospital once more and once more. They are always sore and inflamed. He doesn’t notice when he smashes both his ankles or kicks a nail. He only recognizes the injury when he sees traces of blood on the floor. Sometimes he sleeps 14 hours a day because his body demands it. Maybe because of the medication. “The last time I looked like a living corpse. My body was finished.”
On a February day in 2017, the then 24-year-old had to go to the hospital once more with severe pain. The doctor says: Two days later and we would have had to amputate the lower legs. “Why not?” Schwarzhuber thinks. “Why not just cut off the problem?”
Doctors advise once morest it. Prosthesis builders advise once morest it. Prosthesis wearers advise once morest. The bone might continue to grow, he might suffer from phantom limb pain for the rest of his life, or he might never get out of his wheelchair once more. But Schwarzhuber dares to take the step into the unknown: on Valentine’s Day 2017 he had both lower legs amputated. “I wanted to be free,” he says today. “My life shouldn’t just be regarding my illness, it shouldn’t feel like a struggle. After the amputation, I knew there was only one direction left – and that’s forward.”
He treats every decision as an amputation: there is only one way and no turning back
Four days following the operation, Schwarzhuber starts training, learns to walk for the third time, following 136 days he runs his first ten-kilometer run, then a half marathon, a triathlon, and his first marathon. Today, the trained computer scientist is a speaker and coach for mental strength, stands on stage with his hair slightly brushed to the side, his prostheses clearly visible to the audience under his short leather pants. “It’s not our legs that move us, it’s our thinking,” he says. Last year he cycled from Munich across the Alps to Venice with sports friend Achim Heukemes – in 22 hours and 50 minutes. After crossing Germany, he wants to make his dream come true: the Ironman in Hawaii next year.
More than 2,700 subscribers follow Maximilian Schwarzhuber on Facebook. In his podcast “Legraum – real men don’t have cold feet” he interviews people with strokes of fate and answers the questions of the listeners: “Where are your feet now?” or “How do you have sex?” Schwarzhuber wants to break down inhibitions. “Many people don’t know how to behave towards people with disabilities.” On his blog, he advises treating every decision like an amputation: there is only one way and there is no going back.
That’s how he sees it for his tour on May 6th, crossing Germany in 48 hours on a racing bike. The black cube wheel is ready in the garage. Traffic and weather might become unpredictable – and concentration, which decreases. In addition: If Schwarzhuber sweats in his prostheses, he slips out and in. An antiperspirant spray is supposed to help, but if you sweat less, the friction increases, which hurts your knees in particular. The team that will accompany the two should have no mercy. “Even if the excuse for a break is ever so good – I inoculated them: No pity!”
And if it doesn’t work? Schwarzhuber says: “You fail going forward.”