May 12, 2011
Chili, N.Y. – “You can’t judge it by the name, the name is so misleading,” says Ben Di Pasquale about his battle with Chronic Fatigue Syndrome. “It’s not just about being tired, tired doesn’t even come close to describing it… this is my reality and it might be too much for some people to take.”
Ben Di Pasquale’s reality five years ago was good. He was an 18-year old with lots of friends, who played sports and got good grades. In 2006 he graduated from Churchville Chili High School and went to RIT for a semester before the full reality of Chronic Fatigue Syndrome set in. It kept Ben from his life and his friends. “I would go out with them for about an hour and walk around the mall,” he says. “I would come home and crash and I’d be in bed for the next couple of days just aching and exhausted.”
It got worse. About to celebrate his 23rd birthday, Ben is almost completely bedridden. On a good day he can take a few steps with a cane. At 6’2 he’s down to 118 pounds. He needs others to wash his hair and cut his food. In 2010 he left the house just twice, both times in a wheelchair to see doctors.
“I’m amazed that he’s kept his sanity with all the things we’ve been through,” says his dad Jim Di Pasquale. Jim retired to take care of his son. He worked for 29 years as a Rochester police officer, so he knows what hard work is. He knows what tired is. He knows CFS goes far beyond that. “Its way more than tired, it’s a complete exhaustion and when you talk to him and you listen to him he sounds normal, he sounds fine.”
That’s part of the problem. To many doctors Ben looked and sounded fine. They said maybe he’s depressed, maybe he should take more vitamins and get more exercise. Ben tried. It made things worse. He’s now sick and sick of the medical community seemingly not paying attention.