Creative Expression: Life is Funny, but Sometimes Words Fail
Okay, so I’m the first to admit that the subject of ALS and FTD can be heavy. My new book, Last Nerve: A Memoir of Illness and the Endurance of Family chronicles a tough journey. It’s about raising a difficult child, about cancer, about dying of a fatal, neurodegenerative disease. It’s not a beach read. Sometimes, life with genetic ALS, cancer, and neurodiversity can be intense. But it can also be funny.
Even in the final stages of her ALS, my mom, Nanee, had a sense of humor. In her power wheelchair, with a Boost calorie drink shake precariously balanced on her armrest, she’d zoom around her condo and tell us, “Watch out! I’m drinking and driving!”
I always thought it was stunning that Nanee could find humor in the bleakest of times. She actually cracked jokes until she couldn’t speak anymore. And I’m grateful that besides her C9 gene for ALS/FTD, I also inherited her sense of humor.
I was never more stressed out when in 2018, when my Nanee was dying of ALS and my husband Kirk was going through chemotherapy for stage four lymphoma. One day, in anticipation of losing his hair, he asked our 12-year-old son, Alex, to help him shave his head. I sat on the vanity in the bathroom, watching Alex shave Kirk’s hair into a Mohawk. When the Mohawk was eventually shaved off, I took pictures as clumps of my husband’s curls fell into the bathtub. It was funny in the moment, but nothing prepared me for the next day.
I woke up and rolled over to see Kirk’s bald head, and tears sprang to my eyes. This chemo thing was really going to happen. Kirk was about to have poison put into his body. The treatment was so toxic that I was afraid it might kill him. I went downstairs and noticed that he’d left his glasses on the kitchen counter, next to the fruit bowl. I grabbed them to bring them upstairs but decided instead to put them onto the cantaloupe on the counter. It made for a hilarious likeness of my newly shorn hubby.
He came downstairs, took one look at the cantaloupe and busted out laughing.
Another really intense moment in my ALS/FTD journey was when I went for my first in-person longitudinal study. ALL-FTD is one of the most comprehensive longitudinal studies of Frontotemporal Dementia, and their consenting process at UCSF takes over an hour. When I arrived at the hospital after a 90-minute drive from my home in Marin, I was nervous, and I really had to pee. But they never offered me a bathroom, and I was too nervous to ask for one. The hour-long consenting process was very uncomfortable, as I twisted in my seat.
I couldn’t answer the questions fast enough, and when the research coordinator asked me if I’d be willing to donate my brain to research, I snapped at her, “Not while I’m still using it!”
She also busted out laughing. This kind of humor and lightness just gets me through the tough stuff, whether it’s cancer, my Nanee’s ALS, or my own genetic predispositions.
Given that I’m an author, I usually use my words with ease, but sometimes, my words aren’t enough to get me through a trying moment. Sometimes, I have to break out the big guns. As a writer, I’m kind of an introvert, especially when it comes to marketing myself. I have one of these brains that is good at formulating ideas and bad at selling them.
When it came time for me to publish Last Nerve, I was already on all the social media platforms and already had a growing ALS community. What I didn’t have was a way to grow readership. My publisher, Greenleaf Book Group, had a media strategy to help me get my words out there.
For Last Nerve’s book cover, I knew what I wanted. Images of nerve endings, arresting colors, and an easily visible title font. I needed the bright color to express the dynamic nature of the book: angry, scared, passionate, hopeful. Because I already had a book out, and because Unnatural Resources had a yellow, orange, red, and electric blue cover, I wanted Last Nerve to be in the same color palette. I guided Greenleaf to my website, www.mindyuhrlaub.com, which has lots of bright, African-looking prints on it. I asked them to choose colors for the cover page there.
This kind of communication – marketing- is pretty foreign to me. That said, we were able to come up with a gorgeous cover and “brand” for me that I can use over and over. The cover is tomato-orange. My book posters are orange and red, as are my bookmarks, and postcards. The bookplates (for signatures), repurposed from my Unnatural Resources book launch, are yellow, orange, red and electric blue, and they look amazing on the second interior page of Last Nerve.
My web designer, Alison Bricker, has been with me since 2020, when Unnatural Resources came out. Alison has been responsible for my web branding and for communicating with Greenleaf on everything from the design of the newsletter to creating business cards, to sharing media “assets” on the website. All of the art that she has designed has helped me to communicate my message when my own words can’t do it.
My friend and book producer, Jennifer Barry, designed all of my new bookmarks, postcards, and posters for my Last Nerve book tour. She used my branding assets from Greenleaf to help me get the word out there.
They say it takes a village to raise a child. It’s the same about communication. A writer is not sharing any intellectual content – whether it’s a funny joke or a business card – without someone to receive it. To read more about the humor involved in receiving a diagnosis of a fatal genetic mutation, check out Last Nerve: A Memoir of Illness and the endurance of Family. To explore the branding created by Alison Bricker, Jennifer Barry, and Greenleaf Book Group, check out www.mindyuhrlaub.com, @mindywrites1 on Instagram, or @MindyUhrlaub on X.