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Feather River Bulletin
Quincy, California
September 10, 2014     Feather River Bulletin
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September 10, 2014

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Bulletin, Record, Progressive, Reporter Wednesday, Sept. 10, 2014 lIB INSIDE SECTION B: EDITORIAL OPINIONS UPCOMING EVENTS When he has to dig deep, ,Shane always does. He is the toughest person I have ever met." Katie Bell Shane James, an Australian runner, takes a break while running the Lost Sierra Endurance Run put on by the Sierra Buttes Trail Stewardship on Sept. 6. James suffers from a rare disorder called stiff person syndrome. To combat the effects of the disorder, James runs marathons and ultra-marathons frequently. Photos submitted Runner deals with disorder by pushing his limits James Wilson Sports Editor M ost runners run desl}te the pain. i' S"h-di.e James rtins to halt the pain. James, a 45-year old Australian national from Tazmania, ran in the Lost Sierra Endurance Run in Graeagle last Saturday. Along with his running shoes, James packed a suitcase filled with inspiration and unloaded it in Plumas County. In 2007, James was diagnosed with a rare disease known as stiffperson syndrome. The disease affects roughly one out of every million people. Since James was diagnosed, he's learned to live with the disorder by staying in motion. The uncertainty "It started off with back pains," James recalled, thinking back to 2006. "I went back and forth between my (general practitioner) and a pain specialist, but they couldn't quite pinpoint what was going on." These weren't any ordinary back pains. James' body was thrown into spasms that broke his ribs and back and left him in excruciating pain. The doctors James visited prescribed him multiple pharmaceuticals that simply didn't do the trick. SPS is such a rare disorder that not much is known about it in the medical profession. Because so little is known, it's often difficult to diagnose the disorder in someone. Muscles in the body stiffen to the point of impairing movement. In James' case, it completely halted it for days at a time. After 18 months of living in uncertainty and pain, James visited a neurologist who diagnosed him with the rare disorder. "It was mainly a relief knowing what I was up against," James said, remembering that flash of clarity. The fight "I spent six months on my back, and had to completely learn to walk again," James continued. "I felt like I was on my death bed. I never felt more desperate in my life." Evoking the moment he decided to fight back against SPS, James said he got to the point where he felt he had no Shane James and his girlfriend, Katie Bell, pose at the finish line with the organizers of the Graeagle-based Lost Sierra Endurance Run. From left: Greg Williams, James, Bell and Tara Stone. Shane James trains for the endurance run by climbing Genoa Peak, located in the mountains east of Lake Tahoe. James deals with the pain caused by his disorder by shifting it down into his legs. Running makes it bearable to live with. Shane James zig-zags down a mountain near his home in Tazmania. Though James' home base is in Australia,he runs inraces all over the world, bringing awareness to stiff person syndrome and other rare disorders. other choice. James was slowly walking along the beach near his house with the help of a walking stick, and decided he would fight through the pain. James threw out the stick and slowly started shuffling along the beach, one foot at a time. Though it took a while, James started to notice progress. Some days were better than others, however. "It seemed like it took a long time at the time. Some days I could barely walk." Eventually, James. went from shuffling to walking to running. One aspect of James' SPS that didn't go away was the pain. It did, however, shift. That shift is what made all the difference. "Certain days, the pain in my spine would be horrible," explained James. "When I ran., the pain would transfer into my stomach, and eventually down into my legs. I call it good pain rather than bad pain." The pain, now bearable, motivated James to keep running. The endorphins and opiates naturally released eventually became James' preferred medication. Learning to live with the disability eventually inspired James to take his running to the next level and spread awareness about SPS and other rare disorders. The journey Once James was up and running, he never stopped. James has become a globetrotter, running in various marathons and ultra-runs all over the world. James joined the Genzyme running team, which runs each year in the Boston Marathon to raise money for the National Organization of Rare Diseases. In 2011, James took on his fn'st marathon, the Australia Day Marathon. James then went on to place first in the 100-mile Beyond Limits Ultra Marathon in Palm Springs. James ran a 100-mile race in the Himalayas in India where he met his girlfriend and current traveling companion, Katie Bell. Though both are long-distance runners, their experience on the trails together has been limited and that is what eventually led them to Plumas County. "We've actually only run the Cadbury Marathon together and wanted to fred a run to do," said Bell. "We found Lost Sierra (online), then saw the video for it and thought, 'Oh yeah -- that's our run.' We love being on the trails together." The two had a blast last Saturday. James and Bell ran the 50 kilometers together the whole way, finishing the high-altitude run in nine hours, 24 minutes. Both agreed that the Lost Sierra Endurance Run was brutal, but it delivered that "good pain" that James uses to avoid the other kind. "When he has to dig deep, Shane always does," proudly stated Bell. "He is the toughest person I have ever met." James attributed the toughness his girlfriend mentioned to his disorder. "Getting this illness and pushing through it taught me how to do things I didn't think I could do before." I