Outside the Circle: Finding Allies in Unexpected Places Inside the Circle: Finding an Ally in Myself

The more time I spend speaking publicly about ALS, FTD, genetics, medical advocacy, and caregiving, the more I find people who can relate to my story. Last Nerve: A Memoir of Illness and the Endurance of Family is familiar to many of my fellow “sandwich generation” peers, but it’s also resonating with people with chronic illnesses that aren’t ALS or FTD.

One of the people who came to a book event said that she is going through her third round of chemotherapy for breast cancer, and that reading my book really made her think about getting in-home care. Another woman who read Last Nerve told me that she has a wasting muscle disease and that she could relate to some parts of my book. These kinds of interactions with people help me feel connected to people who I might not otherwise know. I’m glad that they could take something away from my writing.

I love it when I make a new acquaintance because a reader says, “I loved your book. My brother/friend/mother/cousin has ALS. Can I put them in touch with you?”

One Amazon review on my book says, “I just want to hug Mindy and her family,” and that reader doesn’t have any connection at all to the ALS or FTD community. A neighbor who I barely know saw an article about me in a local paper and offered to hold a book club event in her house for me. She also has no connection to the C9 gene.

Definitely the weirdest friends I made from outside the circle was when I went to speak to members of Congress in DC. I spent the day with I Am ALS and the ALS Network, speaking to representatives about genetic nondiscrimination and about funding for ALS research. Most of the folks I talked to were members of the ALS Caucus and supported the ACT for ALS. Most of them, like me, leaned left. But I also had the chance to speak to Republicans, which made me a little nervous. After all, it was Trump who recently defunded ALS research through Harvard and Columbia Universities. I met with the head staffer of a representative from southern California. Her boss was not an ALS Caucus member. When our group went to speak with the staffer, we asked her if she knew what ALS was. Surprisingly, she said yes. She’d recently lost her fiancée to SOD1 ALS. She knew about the disease all too well. She was his caregiver and was heartbroken. I was sad for her and also delighted that she was going to give our message to her boss.

A few months ago, I went to a friend’s surprise birthday party. It was a month before my book launch. There were a dozen people having dinner together that night, and the birthday girl mentioned that I had a book coming out. I was shocked that everyone from the party came to the launch event, bought the book, and reviewed it on Amazon!

And speaking of friends, a very dear friend of thirty-five years recently read my book. He and I had been in the Denver music industry in the 90’s, and our bands have played together on multiple occasions. He wasn’t a member of the rare disease community, but while he was reading Last Nerve, he learned that his stepmother is showing early stages of dementia. Now, we’re dear friends in a different way.

My next-door neighbor, who I barely know because she lives half the year in Switzerland, stopped me on the sidewalk recently and told me that my book made a huge difference in her life. She has her hands full with a neurodiverse child and with other issues in her household and she said she was glad to know me. Now, we’re planning to go out for coffee.

I knew that being diagnosed as a carrier of a fatal neurodegenerative disease would change my life, but I never expected how much better my life is as a result of ALS in my world. I also never thought that my genes could define me, but I identify as part of the ALS/FTD community. The strength I get from - and the pride I feel being a member of - this group far surmounts any fears I may have as a genetic carrier of ALS.

Yes, I’m an activist, author, mother, daughter, wife, musician, filmmaker, and all of the things that make me me. But it’s all against the backdrop of a disease that will possibly kill me someday. When I jump rope or work out in the gym, ALS is always at the back of my mind. I remind myself that strength and balance training are especially important for someone who may lose physical functions someday. I constantly wonder, “Will I be able to do this in ten years?”

When I look in a mirror and see the wrinkles, lumps and bumps, and effects of gravity on my 56-year-old body, I also remind myself that I’m upright, that my arms and legs still work, and that I can still chew my food. I never take anything for granted.

Having the C9orf72 genetic mutation for ALS/FTD has expanded my world in so many ways, and as much as I wish I didn’t have to deal with the prospect of a future with ALS or FTD, I still see this gene as a gift.