More on Brian Jones, Tom Crean and fighting ALS #BrianStrong

Tom Crean shakes Brian Jones' hand during a visit at Hospice House in Bloomington on Jan. 14.
Tom Crean shakes Brian Jones’ hand during a visit at Hospice House in Bloomington on Jan. 14.

By now, you’ve probably seen the postgame press conference video from Sunday night of Tom Crean conducting his interviews with an ALS patient named Brian Jones in a wheelchair at his side.

Jones is a 38-year-old Bloomington native born with a developmental disability and is now in the late stages of fast moving ALS (Lou Gehrig’s Disease). I featured his relationship with Crean and IU basketball in today’s Herald-Times, but there was more than could fit in that one story. Here’s just some of that information.

Jones’ sister, Adele Rene, has taken a leave from her work as an actress in Los Angeles to serve as Brian’s caretaker for the remainder of his life, which has already exceeded doctors’ expectations by more than four weeks. The two recently spent the three-month anniversary of his ALS diagnosis watching the Stephen Hawking bio-pic “The Theory of Everything.”

“It was kinda scary to watch a movie about what you or someone you love has that goes into such detail, and you don’t have all the answers,” Rene said. “We decided to have courage anyway and watch it together. The movie ended, and I felt joy the movie’s out there and respect the actors for their performances, but it was hard to watch (Hawking) go through things we went through and know more of what’s coming for us.

“But after it was over, I said to Brian, ‘Did you like it?’ He said, ‘Yeah.’ I said, ‘What did you like most?’ He said, ‘Stephen Hawking’s theory in science.’ I said, ‘What do you mean?’ He said, ‘His theory of everything.’

“It wasn’t the ALS that stuck out to him. He loved the beauty of Hawking’s brain.”

The movie still sticks with Jones, and when I asked Monday about the sudden rash of media attention being pointed his way, Jones responded softly, with Rene providing the translation, “It’s unbelievable. I feel like my life is bigger than Stephen Hawking.”

That optimistic slant is just one example of how the developmental disability that might have seemed like a disadvantage in Brian’s life has actually proven to be extremely beneficial, from the moment his legs stopped working last April to being diagnosed with ALS in October to last month’s dire and imminent prognosis.

“He has an uncanny ability to see positivity first and foremost, and sometimes only in every situation,” Rene said. “It has absolutely been one of the greatest fights of his life in serving his perception of this disease now. He doesn’t let negativity in. He makes that choice and is not afraid. He’s just an incredible person, one that people say will change your heart when you meet him.”

That was true of Crean, who couldn’t say enough about his new friend on Sunday night.

“I was inspired walking out of (Hospice House) seeing him, as he would have been happy to see me. Probably 10 times more I was inspired walking out there,” Crean said. “… This would be a model of perseverance to me right here. Brian Jones is a model of perseverance.”

If you’re interested in supporting Brian Jones and his family, friend him on Facebook at Brian Jones II or visit his gofundme.com page.

One comment

  1. Bravo. Great story Jeremy. If you go to Brian’s Facebook page, he was happy to pose with your front page article in the HT. The family was beyond excited about it.

    #brianstrong

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