Emma Picetti, volunteer and ALS advocate
My dad, Jason Picetti, was a middle-school math teacher. He and my mom, who is also a teacher, were married less than two years, when he began to have strange symptoms. He noticed a change in his ability to talk and to sing, which was a big deal for him as a musician who played keyboard and sang in a band. It took many months before my dad was diagnosed with ALS in February 2008, just before I was born in April.
Because I was so young, his illness didn't affect me in the same way that it did my family members. As his disease progressed, we needed more help so he had two caregivers, in addition to my mom. Eventually, he was in a wheelchair, had a feeding tube, and an oxygen mask. My grandparents helped a lot, and my aunts and other family members did too. My dad died in October 2011, when I was three years old.
Because of this horrendous disease, I did not have the chance to really get to know my father. So it was always wonderful to hear stories about what a great guy my dad was. I later learned that he was inspired by SMITH magazine's "Six Word Memoir" project and lived his life by these words, “Speech and movement compromised, spirit unaffected.”
I also found out he created a blog, “The Adventures of ALS Boy,” to document his, “... joyful life while battling the evil forces of ALS," which became an ongoing segment in Psychology Today magazine. Over four years, he created hundreds of entries about his daily life, including a letter to me on my first birthday, and other reflections, like this one.
“... As I stared at my family, I felt my love for them welling up inside me, looking for a place to escape. I told them in my clearest possible voice, 'You make me so happy.' It was in that all too brief moment in time that I realized you don’t need to go on any elaborate vacations or do anything extreme and out of character to make an everlasting memory. All you have to do is give yourself permission to experience these fleeting moments as they happen. I can accumulate all the digital photographs on all the hard drives the world over, but they will never approach the lush beauty and vivid clarity of the memory from that night ….”
I also discovered that my dad had a dream about me before I was born, and had selected my name, Emma, for a very special reason. It was shocking and wonderful at the same time. I was so happy and excited to learn that my "popular name" had such a deep and beautiful meaning.
This year will mark ten years since I lost my dad to ALS, but I am so grateful to have the legacy of these moments, always and forever. I am thirteen now, and am following in my parents’ footsteps as a volunteer tutor afterschool, as a participant in the Golden West Chapter’s Walk to Defeat ALS, and as an ALS advocate. I encourage everyone to get involved in raising ALS awareness and funds, and to participate in community-building activities, like the annual ALS Day of Remembrance.
It's so important for all of us in the ALS community to keep supporting each other and to never ever give up. It is only together we will defeat ALS.
Emma (Every Moment Matters Always) Picetti
Team JP Rocks, Walk to Defeat ALS