Advice on How to Live from a Woman Diagnosed with ALS

Debbie Dauer

Alexa Jones finds inspiration in ALS-diagnosed Debbie Dauer & her blog of how to live your best life, no matter the circumstances.

Lunch dates with her eldest daughter, making funny faces and wielding props in a photo booth with girlfriends, snapshots of snuggles with the family dog — just a few examples of the photographs that fill the Facebook profile of Debbie Dauer, a New Jersey schoolteacher turned avid blogger. At first glance, Dauer’s profile suggests ‘normalcy.’ Hidden, however, among the slew of smiling faces and silly snapshots are hints that her life often lacks the comfort that normalcy provides.

The cake Debbie made on her diagnosis-versary.

My favorite of Dauer’s posts is a photograph of a homemade cake covered in chocolate frosting. The cake’s only decoration is the words: “FUCK ALS I AM STILL HERE,” scripted in white icing. The cake was baked in celebration of what Dauer has dubbed her “diagnosis-versary”: the day she was diagnosed with ALS. Dauer also shared her celebratory dessert on her blog, Not Gonna Be a Debbie Downer. As her blog title implies, she uses the power of the written word to describe her journey as a person living with ALS and shares her newfound gratitude and advice with her readers along the way.

ALS, or amyotrophic lateral sclerosis — often referred to as Lou Gehrig’s Disease after the 1930s baseball player whose career and life were cut short because of it, bringing ALS to national attention — is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. According to the ALS Association, this leads to the degeneration of motor neurons, which affects the ability of the brain to initiate and control muscle movement. Those who are diagnosed may lose the ability to speak, eat, move, and breathe.

For me, those three letters trigger a slideshow of images in my subconscious: my grandmother in a wheelchair, my grandmother in a hospital bed, my mother crying. I was so young when my own grandmother was diagnosed with ALS that I remember later admitting to my mother that I have no memory of hugging her or holding her hand. What I do remember is the jealousy I felt when my older cousins shared stories of summers with my grandmother, whom we fondly referred to as “Gigi,” splashing around with them in the pool and teaching them how to bake her famous apple pie. My memories of summers at Gigi’s are limited to those of sitting in an uncomfortable chair next to her bed, watching old movies, and lifting a straw to her lips when she was thirsty. Events that, at the time, seemed dull and boring, I now recall with an intense fondness and longing.

My personal connection with ALS is what brought Dauer and me together. I came across her story when my father reconnected with his former college classmate on Facebook. Dauer and he both attended Washington College in the late 1980s. My dad admitted that they hadn’t been close friends in college, but he fondly remembers her passing smile on campus. After reconnecting, he found Dauer’s blog and became an avid reader. He shared his favorite posts with me, and I was instantly hooked.

While reading Dauer’s posts, I constantly found myself rereading sentences and staring at my laptop screen in disbelief. At times, I could not process what I was reading. For a woman in her position, she could have easily slipped into a pit of darkness. Instead, Dauer is a source of positive light, and she shares this light through her writing. In one post, she shares that ALS has redefined her purpose. Prior to her diagnosis, Dauer’s purpose was that of a mom, wife, and teacher. After being diagnosed, she is still all of those things, but she is also an advocate, an informer, and a writer.

“Writing has always been a dream of mine, but I never thought that it would come to fruition,” Dauer said. “When I started this blog and I realized I was connecting with people, my dreams came to fruition, and I achieved another purpose. My ALS made that happen.”

In a blog post titled, “A happy list,” Dauer shares a list of things that bring her joy. My favorites from her list include Jimmy Fallon, babies, and hibiscus flowers. At the end of her post, she prompts, “What would be on your list?” When I finished reading, I found myself reaching for pen and paper and jotting down a happy list of my own. Dauer has also posted lists of blessings, as well as a list titled, “I can,” that simply states the things that she can still do as her disease progresses. Nowhere in her posts can you find a list titled, “An unhappy list,” or one called, “I can’t.”

When I asked Dauer what she wanted her readers to take away from her blog, she responded, “That life is worth living and to appreciate all the small things. Everyone is going through something. We should feel compassion.”

Of course, not all of Dauer’s posts are brimming with positivity. A post titled, “Really negative blog post,” even comes with a warning that urges readers to proceed with caution. In this post, Dauer describes “a pretty shitty week” filled with ER visits, hives, and relentless heartburn. But no matter how negative a post begins, Dauer always manages to end it on a high note, usually with a short prayer or hopes for a better tomorrow.

I asked Dauer if she has ever had the urge to delete her blog and just be angry and resentful. Her reply? “Not at all. That would be a bad example for my kids on how to handle life’s adversities.”

As a woman who has lost control of her body, she takes advantage of the things she still can control: her attitude, the way she treats others, and her gift of writing and teaching. Dauer shared with me that the biggest thing she has learned from her experience with ALS is that time is a precious commodity. “You should do the things in life that make you happy,” she said. So, take Dauer’s advice: Do something nice for another person. Be there for a friend. Stop and smell the roses.

And as Dauer ends each of her blog posts with her self-acclaimed mantra, I’ll do the same: “Live to Love. Love to Live.”