Words matter. Through voice, we speak words to instantly transmit positive thoughts, encouragement, comfort, love and joy. Through writing, we use words to share valuable information, to describe transformative ideas and to compose inspiring stories. I write for Rhode Island NATURAL AWAKENINGS magazine, because the focus is upbeat – Healthy Living Healthy Planet – and my words go out to over 50,000 readers. More recently, I’ve been working on the story of our late son, Neil, who was, and still is, an enthusiastic and conscious communicator, taking care in choosing just the right words.
“Neil had a unique voice, his own way of expressing his life experiences, character, thoughts and feelings. That was until a tumor started to grow inside his brain and gradually took away his ability to write and then his ability to speak. The name of the disease, diffuse intrinsic pontine glioma, is a strange string of uncommon vocabulary words. It is better known by its acronym, DIPG. Diffuse means the tumor is dispersed throughout the tissue, as opposed to being a solid tumor. Pontine refers to a part of the brain stem known as the pons, which relays messages between several areas of the brain and between the brain and the rest of the body. Without the pons, the brain would not be able to function, and neither would the body. Intrinsic means deep-seated. Each of these words means the tumor is inoperable. Glioma refers to the glial tissue that is supposed to support and protect the nerve cells, only in the case of DIPG, the glial cells grow out of control and strangle the nerve cell pathways. DIPG gradually takes away all physical abilities, except the ability to think. Throughout the progression of the disease, Neil remained conscious of everything that was happening, and somehow managed to accept it all with grace.
“Do people realize how blessed they are to have a voice? Since Neil is no longer able to share his story, his thoughts about life and his dreams for the world, I’m here to do it. Things happened in Neil’s life that other kids need to know about in order to help make this world a better place. As Neil’s mom, I’m able to access a lot of material and will share as much as I can in Neil’s own words and the words of the friends, family, coaches and teachers who knew him best. Neil loved a good story, and if Neil’s story and his thoughts about life make people think, and think about their own stories differently, then I will have done my job well.”
I welcome blog readers to engage and share the thoughts sparked by these words. Words are expressions of thought. Words and thoughts are influential. I dream of empowering more young people, like Neil, to share their ideas, stories and dreams for a better world. Read Neil’s story in the Boston Globe.