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The Author

My name is Rachel Doboga, and I was diagnosed with ALS at just 28 years old in 2015. The diagnosis process took a year because my doctor at the time never even thought of ALS as a possibility since I was so young. My body, without warning or reason, turned on me, and that meant the end of so much. My teaching career, dreams of motherhood, and growing old with my husband were all swept away like sand when I believed they were stone.

Now I live on a ventilator, so I can no longer speak or even eat. I survive on a feeding tube. I am a quadriplegic, meaning I can only move my face, so I use an eye gaze computer to communicate.

However, I have come to see that in my mind, I am free. It is the one part of me that ALS can’t tame. My mind is a mighty force, it’s own universe apart from my disease. Lightning storms between firing neurons create constellations of thought and galaxies of feeling. Ideas dart like comets across my vast, wild frontier.

In my mind, I still hike, climb, canoe, and fossil hunt with my husband. I still dance with the Moscow Ballet in front of packed theaters. I still speak French and a decent amount of Russian. I still drive for hours and hours on a thousand road trips. Visit my YouTube channel to see videos of me before ALS. 

I have thrown myself into the fight against ALS. I advocate and raise awareness through my writing, and I am always looking for new ways to spread the word. I have written for The Huffington Post140146137 chronicling life with ALS, was a columnist for ALS News Today138 and ALS Worldwide141147139, and I run my own blog. Unfortunately, most of my ALS Worldwide columns were published directly to social media, so they are no longer available. I was honored to be a speaker at the National CDC ALS Registry Convention in 2016 and was the guest speaker at the Oregon & SW Washington ALS Association Gala in 2017, raising $147,000 for research to cure ALS. Join me on my journey to learn about ALS and experience my new normal.

The Blog

My blog’s name is a tribute to Meg Rosoff’s novel, How I Live Now, the ultimate tale of resilience and determination. Just as the main character Daisy learns the true nature of loss (“If you haven’t been in a war and are wondering how long it takes to get used to losing everything you think you need or love, I can tell you the answer is no time at all”), but never gives up, claiming, “Fighting back is what I’ve discovered I do best.” This blog chronicles my battle against ALS. I advocate and raise awareness by showing the reality of ALS with humanity, vulnerability, and unflinching honesty.

Click How to Help136141149141 to find ways to join the fight to defeat ALS and support the pALS (people living with ALS) in your life.