We first met Thomas Ohlson during MTV's "Diary of Facebook," a 30-minute documentary that delved into the social-networking site's effort to highlight users' life-changing stories.
In 2005, Ohlson was diagnosed with amyotrophic lateral sclerosis (ALS), a devastating disease that causes motor neurons to die, leading muscles to waste away while cognitive abilities remain unaffected. Confined to a wheelchair, unable to talk and despairing that his life no longer had purpose, he ended up creating a Facebook account and, in turn, new reasons to keep fighting. Though he can only type with two fingers, Ohlson has become an articulate ALS activist, sharing his experiences and becoming a public face of his disease.
His courage in the face of unimaginable suffering was so affecting that we decided to visit Ohlson and his family at home for further insight into their remarkable situation. "I spend a lot of time thinking about how wonderful my life was only five short years ago — the dreams I had for myself and my family," Ohlson told us. "Now, all gone. I have no real future and have impacted my family in ways that cause me great sorrow. ... I want my family to remember me as the strong and proud father and husband I once was, not the disfigured and helpless creature that I have become. ALS is not only killing me, it is taking my loved ones with me — killing any semblance of a normal existence for them."
The brutal truth is that, not only is there no cure for ALS, there is not even a single treatment for it. "I feel like this is a bad joke," he said. "How can almost every disease have some kind of treatment, but ALS have none?" When his young daughter found out her father could no longer speak, she cried for three days. Then she typed him a message on the computer he uses to communicate. "You can teach me things by putting things on the screen and you will always love me, so that's OK with me," she wrote. "So that's all I need to have a good daddy just like you."
"I had an epiphany," Ohlson said of that exchange. "Nobody wanted to see me die. And I realized in that moment I did not want to leave them."
Ohlson now hopes being open about his suffering will spur action, involvement and understanding about the disease. The key to surviving ALS, he explained, is remaining an active participant in life. Social-networking sites like Facebook, then, have been invaluable tools, allowing him virtually to step outside his confines and connect with the world around him. Anyone who wants further information or is interested in joining the fight can visit ALS Therapy Development Institute. "In a world where we can split the atom, send people into space and create life, no one should have to suffer," he said. "If we devoted ourselves to preserving life rather than our bank accounts, we would all be richer for it."
At the same time that he suffers, Ohlson admits his affliction has given him a deeper understanding of what it means to be truly happy. "Stop always looking to the future for happiness and appreciate what you have right now," he said. "Life is a gift to be both enjoyed and cherished. Enjoy every second, every minute and every day. Cherish your health and recognize how precarious it is. ... And always remember: Success is not measured by the possessions you surround yourself with; rather it is measured by the people who choose to surround you."