What’s Next? After Six Months of Promoting my Book, Life Goes On
This last half-year has been a whirlwind. Since Last Nerve: A Memoir of Illness and the Endurance of Family hit the shelves last May, life has been large. My book was an instant Amazon best-seller in several categories, including genetic health. In June, End the Legacy celebrated its second birthday with a community summit. It was a fantastic way to debut my new book to a live, ALS-friendly audience! My public book launch at Book Passage was a standing-room-only event, where I was joined by fellow author and friend, Shannon Takaoka, a great interlocutor. The afterparty at Mijo was a blast, during which I learned that Book Passage had sold out of its inventory of Last Nerve.
In July, UCSF hosted me to do a book talk at their Mission Bay campus. Speaking to neurology students and professors was a whole different kind of experience for me. There’s nothing like talking like a wannabe expert in front of a room full of brainy neurologists. The summer continued with multiple television interviews in San Francisco, San Jose, and Boston.
ALS TDI and Alexandria Real Estate Equities hosted a fantastic event featuring Last Nerve. Again, I spoke before about 80 neurologists, patients, pharma folks and neuroscience researchers. The venue was packed with people who were there to collaborate on finding a cure for ALS. What a night!
The summer continued with appearances on podcasts, radio shows, and newspapers, In August, I did another standing-room-only book event in my hometown of Highland Park, Il. Such a treat, to reconnect with family and friends that I hadn’t seen for years. My Dadder and Brudder hosted an after party next door at a café, so I was able to talk with folks one-on-one. In August, I appeared with my friend and fellow writer, Marianne Lonsdale, at Clio’s Books in Oakland. It was an intimate and fun event. The owner even offered to stock my first book, Unnatural Resources.
I was thrilled to win an award from the National Nonfiction Writers association for my memoir, Last Nerve. To be an award-winning author is almost as cool as being an award-winning activist! And speaking of activism awards, ALS TDI honored me with the Fran Delany Challenge and Respect Award. This honor is given to someone who, through advocacy, collaborates with others to spread awareness and find a cure for ALS.
With autumn comes the conclusion of my book tour. My next stop is Denver, where I’ll be in conversation with my friend and executive producer, Sarah Presta. It’ll be a great chance to reunite with friends from my years in 40th Day. Then comes Corsicana, Texas, where I did a residency just a year ago. They’ll have me in their storefront bookstore, and hopefully, the artists in residence will come out for the event. Los Angeles is my final stop. The ALS Network (formerly the ALS Association of the Golden West) will host me to give a motivational speech for their annual Walk and Roll event fundraiser. I’ll have a booth there, on race day, too, although I’m not sure where the runners and rollers will put their signed copies. Those running shorts are pretty tight!
After the winter holidays, my focus will start to turn toward my next project. I was accepted to a 2026 writers’ residency in San Miguel de Allende, Mexico. I’ll be staying with friend and author, Janis Cooke Newman at her Litcamp week away. I have the opportunity to also attend the San Miguel Writers’ Conference so I can brush up on my skills. I’m already working on something completely different. It’s a collection of horror stories for young adults. I’ve already written the first two stories, and they’re super creepy. One is about circus freaks. The other is about self-replicating aliens who invade Earth.
While I’m excited at the prospect of generating new content, I’m also very aware that my work in the ALS realm is far from finished. Until presymptomatic carriers of ALS can enroll in research the way symptomatic patients can, I won’t rest. I’ll continue to speak on panels, at conferences, on the Hill, on television, radio, podcasts, and in newspaper articles about the way that genetic carriers are overlooked. Until genetic discrimination of carriers by insurance companies ends forever, I’ll make it my business to raise my voice against this injustice. And it’s safe to say that until there’s a cure for C9 diseases, I’ll do this job. I look forward to the challenge, but I also look forward to a day when ALS is no more.