I was diagnosed June 2015 at age 28, but I had actually already had ALS for a year by then. The diagnosis process took so long because my doctor at the time never even thought of ALS as a possibility since I was so young. The disease started in my left ankle, then worked up my leg before spreading to the right leg. I fell down constantly, and then the weakness went to my hands. Now I am losing my speech. However, I don’t believe that this is how my story ends. I am determined to do whatever it takes to survive to see a cure.
Before ALS, I was an English teacher. I absolutely loved my job, and I couldn’t imagine a better way to spend my days. When I became too unwell to work, the loss of my career was devastating. I still struggle with the way my body is no longer a part of my identity. I used to enjoy any activity that involved rhythm, particularly hip hop dance and zumba. I also loved going on adventures with my husband. We canoed, hiked, and hunted for fossils. Before losing my voice, I spoke English, French, and a decent amount of Russian. Now I occasionally read and listen to French and Russian radio and plays. I also watch foreign films and documentaries so that I don’t lose the languages completely.
I have filled the gaps these losses made in my life by throwing 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. Currently, I write for The Huffington Post chronicling life with ALS, I am a columnist for ALS Worldwide, and I run my own blog. To learn more about my philosophy on living with a terminal disease, click here.
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.” This blog chroniclse my battle and serves as a way to connect with other ALS warriors. In addition, this site allows me to make readers aware of ways to influence proposed and current legislation that effects the ALS community.
Click How to Help to find ways to join the fight to defeat ALS and support the pALS (people living with ALS) in your life.