Tag Archives: you’re not you

Jodi

I’ve lost another friend to ALS. Jodi Oliver was diagnosed in May 2013, at 44 years old. She died last week, on April 2, 2015. It was just two weeks after our friend Trickett Wendler died, and so it has been a particularly rough time in my ALS life.

Jodi was another mom from my Facebook group. You’d think there were a lot of us, based on the writing I’ve done about the group, but there were only five original members. Now there are two left. Two. I’ve equated it to a squadron of soldiers, but really it’s not. We didn’t enlist, and no one ever tells us that there’s a chance we will get out alive, go home, start over.

But if we were a Band of Sisters, then Jodi was our Sunshine Girl. She lived in Orange County, California, had a golden smile to match her hair, and loved sunflowers. After her diagnosis, she befriended a producer for the movie You’re Not You, about a young woman with ALS, played by Hilary Swank. When the producer, Alison Greenspan, invited her to a premier, Jodi was so excited. “I will probably have security surrounding me cause I tweet constantly,” she told our group. Read More>

You’re Not You

On Saturday night I watched the just-released movie You’re Not You, starring Hilary Swank as a woman with ALS. Swank’s character, Kate, is 35 when the movie—and her disease—begins, and I wasn’t sure what to expect from a film that set out to tell a story that is so close to my own. Though I initially understood this to be a memoir, it is actually based on a novel written in 2007 by Michelle Wildgen. A very brief scouring of the Internet did not uncover Wildgen’s ALS connection or the source of her ability (or is it the screenwriters’ ability?) to so cleanly access many of the emotions and challenges that come with having this disease.

It was my story, at the same time that it wasn’t my story:

The pre-ALS life, full and fulfilling: check.

The initial symptoms, the confusion: check.

Fast forward to a husband helping with clothing: check.

The feelings of blame and guilt: check.

The comfort that comes from connecting with other ALS patients: check, check, check.

But… Read More>