Shane James - Running to Live
Anne-Marie Dunhill / Photo : Anne-Marie Dunhill / 20.01.2014
In October 2012 I met Shane James whilst covering the Himalayan 100 Mile Stage Race. I wrote about him in my article “Ordinary People Doing Extraordinary Things”. I clearly remember the first time he came onto my radar; at the pre-race briefing he leapt out of the chair he had chosen and bellowed, “I’m not sitting in that thing, that’s just wrong!” (The chair in question had an unfortunately placed wooden bar in the middle of the seat).
That small anecdote pretty much sums up Shane: loud and incredibly funny. But as the race stages unfolded something else was obvious about Shane, and that was that there was something wrong physically. He would have what appeared to be spasms and we could tell they were happening because he would have a sharp intake of air and his entire body seemed to contract. When he had arrived at the end of the first stage, he was doubled over and when the Co-Race Director Manci Pandey tried to comfort him with a hand on his shoulder he snapped, “Don’t touch me!”
Sitting in a mountain hut in Sandakphu, huddled around a propane heater, he explained his situation to a group of us who were curious but too polite to pry. Shane is suffering from an incredibly rare neurological disease called Stiff Person Syndrome (SPS). A quick Google search will tell you much more. Simply put, the brain sends the wrong messages and as such the person with SPS has constant muscular spasms. Instead of comfort, Manci’s hand earlier had tripled his pain as his brain sent out the wrong signals.
Shane told us at the time that his SPS had been so bad that it broke his back and at one point he was in a wheelchair. It was hard to reconcile the dynamic force of nature we’d just seen plow through the first stage with that information. He went on to explain that after a disappointingly long delay in getting a diagnosis (one health care professional dismissed his symptoms as those of a drug-addict going through withdrawal), he devised his own treatment plan that consisted mainly of running.
Through trial and error he discovered that the dopamine released when he ran counter-acted the erroneous brain signals and he could have several pain free hours from running long distances.
That discovery was the start of an incredible voyage for this larger then life figure. It brought him to the Himalayas and far beyond.
One year later, ever curious, I decided to do another interview with Shane for SleepMonsters, to find up where his voyage had taken him. (Full disclosure, during the Himalayan race on stage four in Rimbik , late at night this journalist pounded on his door and told him to “shut the **** up” as his gaffaws of laughter were carrying through the thin walls. His willingness to speak to me again is yet another testament to his larger then life personality!)
So fast forward, one year later. At the race in the Himalayas Shane met a free-spirited American woman named Kati who has since become his fiancée. This improbable long distance romance between two ultra runners has been the catalyst for several inspiring projects.
In February 2014 Shane will undertake 28 marathons in 28 days in his native Tasmania to raise awareness of and funds for rare diseases. The idea came to him last year as he felt himself getting stronger and stronger from the running. He says, “The symbolism of a marathon a day is important to me because having a rare disease is a thousand times harder then running that distance because of what we go through with the pain and suffering; every day tasks, simple things that most of us take for granted like eating or going to the toilet. It’s at all levels: physical, psychological and spiritual. For me it’s just the satisfaction of being alive, and being able to raise the profile of rare diseases.”
Shane went on to tell me a bit about this past year. He travelled to the United States to spend time with Kati and to run some ultras. He competed in the Beyond Limits Ultra Marathon which he said was a fitting metaphor for what he has been through. He completed his first 100 mile race in twenty-one and a half hours and said he’s learned a lot about distance running from Kati. He also became a part of the Brooks sponsored athletes program and they help him with his running equipment.
When asked about the highs and lows of the past year he said that what came first to his mind was the bombings last April at the Boston Marathon which he was competing in. Shane said that he saw “the worst of humanity and also saw the best.” He was a half a mile from the finish line when the tragedy happened and his heart ached for all affected. He also saw the “best of humanity” when the runners were stopped the kindness of total strangers was amazing as they provided water and sweaters and support.
Returning from Boston he had a chance meeting with a producer who, inspired by his story, has made a fantastic short documentary that eloquently illustrates how far Shane has come, but also explains in factual terms the rare disease that is eating away at his body.
From wheel-chair bound to ultra-runner, Shane is clearly a symbol of hope but he remains down to earth, saying, “It’s not about me, I’m just a spokesperson as I’m the only one with SPS able to run marathons. It’s been an amazing year with my progression since the Himalayas, I just keep getting stronger and stronger. It’s wonderful to be in this position with such a rare disease, to be able to do the things that I am, to run and enjoy life. Meeting Kati was the icing on the cake, she’s the love of my life.”
In Shane’s case, I think the article should be entitled extra-ordinary people doing ordinary things. And any excuses one could possibly think of to get up off that couch and get outside simply fly out of the window once you know the Shane James’s story.
Below are the links to the websites of the charities he’ll be running his 28 marathons in 28 days for:
And Shane’s website is: http://www.run-to-live.com/
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