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.
Off she went to the premier, where she met Hilary Swank, posed for photos, and became a devotee of the film. She even went to see it a second time for a Q&A with its star. Hilary recognized Jodi, and gave her a chance to say a few words. Jodi tweeted, “Q&A was brilliant. I wish Sarah u were there! I’m lucky I have u friend.” And although I wasn’t sure I wanted to watch a movie about a woman with ALS, I did that for Jodi, because it mattered. And after, I was glad I’d seen it, even though my experience watching it alone at my dining room table was decidedly less glamorous than hers had been.
What I remember the most about Jodi is how focused she was on her kids. How could she get them scholarships, how could she surprise them with something fun, how could she find and provide resources to help them face the future as they learned more about ALS? She was a research machine, becoming aware of any possible way that she could ease the ALS journey for her children. Her energy around this goal seemed to know no limits.
I think one of the stories that best explains Jodi involves this thing that she tried to do for her oldest son, Scott. She reached out to me back in June 2014 and said that she wanted to apply on his behalf to get the TV show Overhaulin’ to restore an old car that he had inherited. The car, a 1964 Karmann Ghia, was originally his great-grandmother’s, and Scott and his Dad went to her farm in Utah to collect it. It needed work, and Jodi wanted to help, in any way she could. Scott was 16 at the time, his mom had ALS, and his younger brother had passed away the year before. “I would just love to see him smile from ear to ear, and I know having this car up and running would do that,” she wrote to me.
Jodi and I got on the phone, her voice significantly weakened by ALS, and she told me some of the things that she wanted the show to know about her son. “He points out all the makes and models on the road. Driving with him, I get whiplash trying to look at all the cars he points out,” she said. It took her considerable effort to say those words.
We worked together on a letter to send in to the show, and then she and her family and friends advocated fiercely for Scott’s story to be selected. At one point, Overhaulin’ did reach out to Jodi to request more information about the car, but that was the last I heard about Scott’s chances.
The Karmann Ghia wasn’t chosen, and I asked Jodi’s family for permission to tell this story, because the submission process is supposed to be a secret. In this, Overhaulin’ missed presenting a powerful episode, about a boy who made his mom proud, and about a mother’s love for her children during a time when everything else was uncertain. “Life is made up of memories,” Jodi wrote. And that’s true. Everything that we look forward to—the birth of a child, a special vacation, a movie premier—becomes a memory as soon as it happens. Jodi wanted to create memories for her kids that they could hold onto after she was gone.
Now her own life is a memory, and I don’t think I’ve quite wrapped my head around that fact. I wish I could have gone to that movie with her. I hope she knew that I felt lucky to have her as my friend.
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Wow. I can’t seem to find the right words to express how deeply this has effected me. I send blessings to you and her family and to all those that face ALS.
Sarah, that was a beautiful tribute to a bright and beautiful woman.
Sarah, you write so beautifully! You must have had training for that in college? And you are wise and honest. It’s something we all strive for. Your life is too short, beautiful girl. But, mine also seems short. I’ll be 75 in Noevember…not much time left for me, either.
Sarah, I’m sorry for Jodi’s family, and Trickett’s as well. And I can only imagine the two-fold impact this has on you. As an empathic human being, as a mother, you’re bound to feel jolted by this. But as someone with ALS, it has far-reaching impact.
Theirs is not your story; theirs is their story. Your story has already been different. Your breed of this monster has been…slower. And your breed of this monster may soon benefit from a targeted therapy. Perhaps not the magic pill but a stop-gap until better therapies come. If ever there was a time for this, it’s now – when ALS is so very much in the public eye.
Hello Sarah,
I am so sorry about the loss of your friend Jodi. I am moved to tears, what a beautiful tribute to Jodi. My best thoughts are with you.
Losing two friends in such a short time is very sad and I am sorry for your loss … I can’t help but think
that their passing was more peaceful because they knew you would carry on for them with your ‘mighty pen’……your writings make a difference in all our lives…..thank you Sarah.