It seems as soon as the first snowflake falls until the sound of the birds chirping outside my bedroom window, I force myself to breath. The task of inhaling oxygen and exhaling the toxins in my body is daunting. Painful. A reminder that I have been diagnosed with this thing called ataxia. A rare neurological disorder that is debilitating. A disease that will shorten my life. The "is" and "will" of FA. The present and future. The now and then. The intent to breath and the necessity to keep breathing. Therein lies the tension. The intent vs. the will.
It's so tough when I don't feel I have the two. Or even one, for that matter.
The smallest thing happens, like last night, when I am struggling to take Delsie's harness off for the evening and we bump heads. Well, more like the top of her head rams into my nose. That's all it took for me to stop breathing. As I wiped the blood dripping out of my nose, I screamed through my empty house, "I hate my life."
I forgot the intent. My will of selfishness dominated. It was embarrassing, really.
After I stuffed my nose with Kleenex, I turned on my kettle for some hot water for tea. I pout as I pour the hot water all over the counter. The spill burns my hand. My intent to fill my mug with decaf tea instead creates a mess for me to clean and makes it difficult to breath. "Are you kidding me?!"
My pouting turns into wailing. My house is empty with the exception of Delsie and Phoebe staring at me wondering why I am not breathing.
Snow falling. Christmas lights. The most important day of the year. But I can't breathe. My intent and will to live with FA gets blurred with every cute Christmas card of my friends adorable families that comes in the mail. I can't breathe.
Ingrid Michelson is my buddy these days. I play her song over and over. She reminds me to Keep Breathing.
The birds will chirp again outside my bedroom window. I just need to be intentional to wait it out through the snowflakes. So, Delsie, Phoebe and I will wait. Intentional to be faithful in the winter.
Although I miss my monthly visits to FL, I am hopeful that something, something, something is around the corner...all I can do is keep breathing...and wait for spring...
