I am married to the love of my life, the best man I have ever known. Before being diagnosed with ALS in 2015 at age 28, I loved my job teaching English. Now I enjoy writing, sharing stories on my blog, and working toward becoming a published author. Most important, though, I hope to do a significant amount of good in the world. To learn more about the beginning of my particular battle with ALS, check out the origin story.
My blog’s name is in 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.” I plan to use this blog to chronicle my own battle and connect with other ALS warriors. I am especially eager to work with my readers to ensure pALS (people living with ALS) get the care and access to technology that transforms painful days of surviving into vibrant days of living. Click How to Help to find ways to join the fight to defeat ALS and care for pALS.
At Providence ALS Clinic, the gang gets together: doctors, nurses, and experts from the ALS Association who keep me doing what I love. I am constantly learning to use new techniques for daily tasks and meeting resource experts to develop a care plan. I find strength in my husband Evan, my family, friends, and caregivers, who show me love, protect my dignity, and inspire me to fight.