I Was Already an Activist, but the Book Made me Visible: What Power Looks Like Now

I’ve been an activist for at least fifteen years. In the early 2000’s, I read Adam Hochschild’s King Leopold’s Ghost, which compelled me to learn more from Human Rights Watch and Eve Ensler’s V-Day. I learned from Human Rights Watch that modern-day violence in Congo looks a lot like the violence described in Leopold. In 2011, I started writing a novel, called Unnatural Resources, that featured a Congolese girl, an eleven-year-old underdog named Therese, who stands up to her attackers. I went to the Democratic Republic of Congo with V-Day and Human Rights Watch to learn from women and children who had endured unspeakable torture at the hands of militia members. I was so taken with the resilience of the women in DRC that I went back to visit them again in 2013. I believed in the story I was telling, and it took me nearly ten years to get that book published. 

Since then, I’ve become a different kind of activist. I learned from women in Congo what it means to be strong against insurmountable odds. I learned a lot about family, about love, and about winning a battle against a terrifying opponent. I also learned that activism is sexy. People find it compelling. It’s direct, confrontational, and disruptive. It raises awareness. 

When I learned I was a carrier of the C9 genetic mutation for ALS and FTD, I realized that I needed another approach. Because ALS and FTD are underfunded diseases, I would have to use a different kind of activism. I needed to focus on influencing policy and decisions in an existing medical system through collaboration with others. 

What started as a journal of a different kind of underdog – a mother, daughter, and caregiver with a fatal diagnosis - became my new book, Last Nerve: A Memoir of Illness and the Endurance of Family.  It became an overnight best-seller on Amazon. I’ve toured all over the country with it. It’s won critical acclaim from Kirkus, Readers’ Favorite, and Foreword Reviews. It won a Nonfiction Book Award. But the success of my second book didn’t happen overnight. It required years of ALS advocacy and collaboration to get to this point. 

The first thing I did when I found out I carried the C9 mutation was try to find other people out there in the same situation. I joined a support group which made me realize I wasn’t alone. The group was small, but we knew that there were things we wanted for our community: genetic counseling and testing, enrollment in clinical trials, a voice when policy was being made, a way to prevent disease onset. We started our own nonprofit and called ourselves End the Legacy.

Meanwhile, I enrolled in as many longitudinal studies of ALS and FTD as possible. To date, the number is around twenty. Just about any ALS or FTD researcher in the United States who runs a longitudinal study knows who I am. I’ve even been told that I’m known as Patient Number One (like, the first person to ever enroll) in a few studies. Like many advocates, I know that a collaboration with a researcher is just as powerful as a collaboration with a nonprofit.

I also decided to volunteer as a peer mentor, to help others who found out that they carried a gene for ALS or FTD. I found that there was power in sharing my story. There was power in being vulnerable. And I made many dear friends in the process of volunteering.

As ETL was gaining traction, I was approached by several organizations and government offices to speak on behalf of our genetic community. I’ve given presentations to the NIH and the FDA. I gave a keynote presentation at the NINDS (National Institute of Neurological Disorders and Stroke) I’ve also spoken to senators about policy around funding for ALS research. This is a different kind of collaboration. It affects important decisions in the medical field. When the National Academy of Science, Engineering, and Medicine asked me to collaborate on the report, Living with ALS, I knew I’d reached a whole different level of commitment to this cause.

While Last Nerve made me more visible, it’s really a commodity. I was already an advocate. And there’s really lots of power in advocacy. Don’t get me wrong. Activism is great. It says you’re against something, like violence in Congo. But advocacy says you’re for something, like medical rights for presymptomatic ALS patients. And saying you’re for something is much more exciting than saying you’re against something. 

In the last six months, I’ve won several awards for my collaboration and advocacy. In April, the co-founder of End the Legacy, Jean Swidler, and I shared the Harvey and Bonny Gaffen Advancements in ALS Award. The Les Turner ALS Foundation recognized the community we’d built over the years and the policy changes we’ve pushed. In October, I will receive the Fran Delaney Challenge and Respect Award from the ALS Therapy Development Institute (ALS TDI). It's given to someone who demonstrates an ability to organize and inspire others and who shows leadership by engaging in community and advocacy. And in November, I’ll accept the ALS Network’s Spotlight Award for my productive year of highlighting familial ALS and genetic testing.

I hope you’ll read my book, Last Nerve: A Memoir of Illness and the Endurance of Family. It chronicles my activism and advocacy and tells the story of an ALS worrier to an ALS warrior!