Legacy, Love, and Courage: Things I Want my Kids to Take From Last Nerve
As parents, we never intend to bring children into the world only to screw them up. In the twenty-two years since I became a parent, I’m sure I’ve made my fair share of mistakes. I’ve judged, been unfair, worried (a lot), told half-truths, and shied away from subjects that I found unpalatable. My guess is that most parents have. I’ve also done the best that I could. As have most parents.
When you write a tell-all about your family – especially one that takes place against the backdrop of fatal disease, neurodiversity, and substance abuse – readers get to see everyone’s warts and wrinkles. And in Last Nerve: A Memoir of Illness and the Endurance of Family, I pull no punches. I don’t shy away from the tough stuff in my book because I think that if it’s not honest, it’s not worth reading. And I can’t help other cancer caregivers, ALS patients, or parents if I just write bullshit.
I’ll never really know what Ethan takes away from my book. I don’t even know if he’s read it yet. Alex told me that when he read my memoir, he started to remember some of the things about our family’s stormy years. He was only twelve at the time the story begins, and at nineteen, he’s either forgotten or repressed a lot of it. He did tell me that it was clear how hard those years were on the family, that it was well-written, and that the book shows how much I love the world, and especially my family.
If I were to die of ALS today, or even if I were to die in an accident, my hope is that Last Nerve would serve as a testament about my pluck and optimism. And I would want it to also remind my kids about what it means to surrender and what it means to fight like hell. I want them to remember that this wasn’t the end of our family’s story. That Kirk went on to live many healthy years, that he built a cabin, that he visited Japan, and accomplished so much after he battled cancer. I’d like them to remember that after dropping out of school, finding and losing love, and crashing his car, he supported himself by getting a great job and fell in love again. That Alex went on a humanitarian mission to Normandy, got into music school, wrote an album’s worth of music, and flourished after so many tough things in middle school. That my advocacy has earned me awards in the ALS world. Despite our earlier challenges, we all succeeded.
Between 2017 and 2022, it would have been easy to give up on each other. It would have been so simple to have said, “You hurt me in this way, and I’ll never forgive you,” but that’s not what you do when you love somebody. Alex and Ethan could continue to resent each other, but now, they’re pretty good friends. When Alex comes home from the University of Denver for a school break, he and Ethan get together to hang out, grab a meal, or go hiking. Ethan could make the decision to detest his parents for bringing the hammer down so hard, but he continues to come over for dinner, go hiking with Kirk, or hang out in Oakland with me. As hard as our relationship with Ethan was, we never gave up on him, and he never gave up on us.
Sometimes, people read my book and say, “I could never do what you did,” or “You’re so brave.”
I never consider myself to be more courageous than the next person. I just do what’s required of me in the moment. If any parent knew that they carried a fatal genetic mutation and that their kids were at risk, I think anyone would do their level best to make sure they were part of finding the cure. If anyone’s spouse were going through chemotherapy, they’d step up and be a caregiver. If anyone’s parent were dying of ALS, they’d do everything to ease that parent’s suffering. It’s not courageous; it’s what’s needed in the moment.
And I had plenty of help, so being optimistic, brave, or whatever I was back then was much easier. Without the support of my family – Kirk, Ethan, Alex, Dadder, and Brian – I would have been a total pussy. And my friends were equally helpful, bringing food, keeping me company, staying with Kirk or the kids when Nanee needed me. The ALS community was - and has continued to be - my rock. Nobody knows ALS like someone who’s experienced it firsthand. When I went in for lumbar punctures, EMG’s, and cognitive tests, they got it, and they helped me in my search for the cure. End the Legacy and the ALS Honeybadgers still cheer me on every day.
When I look back on the stormy years, I still perceive Ethan and Alex as a source of hope and courage. I hope that’s another thing my kids take from Last Nerve: that even the youngest people can be inspiring. That they’ve been great role-models for me.
At this moment, there’s no cure for ALS or FTD. The C9orf72 mutation continues to kill people. But just because there’s no cure now, it doesn’t mean there won’t be a cure next year. And it doesn’t mean that my kids will get ALS or FTD. It may not be the legacy I leave them. I hold out hope because it’s the best thing for me to do.