'I am now part of a new family,' Thomas tells MTV News of reconnecting with the world through the social-networking site.
By Eric Ditzian
Thomas Ohlson at Facebook headquarters in Palo Alto, California
Photo: MTV News & Docs
These days, Thomas types with just two fingers. By the time summer rolls around, there is a possibility he will only be typing with one finger or maybe not at all.
Thomas suffers from Amyotrophic Lateral Sclerosis, a disease that causes motor neurons to die, leading muscles to waste away while cognitive abilities remain unaffected; the life expectancy of an ALS patient is two to five years. But here's the thing about Thomas, who first started to feel the effects in 2005: ALS might have robbed him of his body, but it hasn't changed the type of person he truly is.
That's the big takeaway from his appearance on MTV's "Diary of Facebook," in which Thomas shines a spotlight on his affliction and the way the social-networking site has allowed him to interact with the world around him despite his limitations.
Flown out to the company's headquarters as part of its Stories.Facebook.com event, an effort to highlight how the site has effected profound change in users' lives, Thomas spoke to employees via a speech device, saying, "These days, I am confined to a wheelchair and require a mechanical ventilator to breathe. My inability to interact only serves to frustrate and depress me. One year ago, I joined Facebook. Although physically I was isolated, virtually I was around people, submitting opinions and making jokes. My life again has purpose."
Indeed it does, and in an email interview with MTV News — during which, yes, he responded to questions using only those two fingers — Thomas expounded on how Facebook has allowed him not only to become a social creature again, but also an activist.
"Aside from reconnecting with old friends from my past, I am now part of a new family — the ALS community, who, like me, have also found their voices," he wrote. "Every 90 minutes, someone is diagnosed with ALS and every 90 minutes someone dies from ALS. It has been over 140 years since the disease was first diagnosed and we still have no cure, no viable treatment, and no known cause."
Thomas never planned to become an activist or a public face of his disease. He joined Facebook only after hearing his wife and children's stories of connecting with friends. But when he did sign up and began sharing a journal he was keeping for his kids, the effect was remarkable.
"The support my journal has received has been incredible," he wrote. "I am most proud of how many heretofore uninformed people are now aware of ALS and offer their support."
His hope is that his story — as told both on MTV and Facebook — spurs action and understanding about the disease. Yet Thomas doesn't possess a botThomasless well of hope. He suffers. He rages. In a recent Facebook update, he hinted at a time when he'll no longer be able to silently suffer the effects of ALS.
Cruel and unfair though his disease may be, though, Thomas is adamant that his torment ultimately have meaning. He urged people to visit ALS Therapy Development Institute for further information about the disease and ways to get involved with the community. And he made clear that while ALS has taken away so much from him, it has also given him a searing insight into what it means to be happy and human.
"ALS has taught me one invaluable lesson: Stop always looking to the future for happiness and appreciate what you have right now," he wrote. "My memories are now my treasure, and every day is another gift to be enjoyed and then added to that treasure. You can never be too rich or too healthy!"
Related VideosSource: http://www.mtv.com/news/articles/1661010/facebook-diary.jhtml
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