I am Juliet Taylor
a family member of someone we've lost to ALS,
someone who cared for a person we've lost to ALS
I can't turn my back on ALS until we all can. That's why I am here, and proud to fight alongside all of us until we can get rid of this thief of a disease once and for all.
Jeff and I dated for more than six years. We talked and sometimes laughed that we should get married, but somehow just didn’t focus on it too much, just enjoying our lives together instead. When Jeff got increasingly distressing symptoms in the summer and fall of 2018, and an ALS diagnosis was all but imminent, we woke up one Sunday morning and decided over coffee to get hitched. Whatever was coming, we wanted to go through it together. Exactly one week later, we married at home with eight people and four dogs in attendance. We ended our vows with a kiss and then a fist bump. Our formal fight arrived with confirmation of his ALS diagnosis three weeks later. Jeff insisted that we spend our time living – we didn’t know if we had two months, two years or two decades. And live we did – in the nineteen months until he passed in my arms, with beloved family there too, we went white water rafting, speedboating and deep sea fishing. We visited the Canadian Rockies, the Florida Keys, his beloved Michigan and a dozen other beautiful destinations. But it’s the quiet moments that we spent on our front porch in the summer evenings, talking via text because he lost his voice very early on, that will stay with me the most. We had time and the gift to say everything that was on our minds. I hate ALS and what it stole from us, and stole from our family and friends. I hate ALS for what it has taken from others who have lived or are living with this cruel disease. I promised Jeff that I would be okay, and the best way I know to do that is to stay and fight. I can’t turn my back on ALS until we all can. That’s why I am here, and proud to fight alongside all of us until we can get rid of this thief of a disease once and for all.