Excerpt: Writing With My Eyes: Staying Alive While Dying by Angela Parker-Brown

Angela Parker-Brown is a 50-year-old mother of twelve-year-old twin daughters, Paris and Parker. Along with her daughters, she is navigating the everyday realities of living with ALS. She lives in Truro, Nova Scotia, and this is her first book, written with the aid of eye gaze technology.


Little Bits of Everything

Today is a difficult day. Why? I have no single reason to be blue today, just little bits of everything I’ve collected in my mind. Those little bits of everything created a dark cloud today.

Yesterday was flawless. Yesterday I laughed, watched my girls laugh and act silly, like they’re supposed to act. Yesterday we watched a favourite movie, which makes us giggle every single time. Yesterday we had a special visitor, who always leaves me in stitches. Need I say more? When I picture myself (and everyone), I picture a person with a million little pinholes.

Those pinholes are our happiness, our hope, our spirituality, every good thing about us, our love. Those pinholes radiate light. Those lights make us sparkle. Can you picture this? Aren’t we beautiful? I woke up this morning feeling sad and blue. Little bits of everything trying to cover my sparkles.
Little bits of everything trying to plug my pinholes.

They are trying their best to dim me today. They can consume us. Little bits of everything may have dimmed my sparkles today. But I’ve slowly been dusting myself off, little by little. One pinhole at a time. It can be tedious. It can take all day to uncover those pinholes from little bits of everything.

But the results are so worth the work. I’m a bit more sparkly this evening than I was this morning. By tomorrow, those little bits of everything will be nothing but dust. Tomorrow I’ll be back to Full Capacity Sparkle.

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