Wednesday, February 20, 2013

Her Voice

Amidst the shock and horror of discovering that our family was trapped in a web of labels and uncertainties, one thought continued to race through my mind- "her voice"... as the thought pulsed through me I reached for every crevice, every dark hidden corner to find it. I was longing for one crumb- one memory to come rushing over me- a whisper... anything to put me at ease. The faster I searched the more suffocated I felt. It was a great fear of mine that I would never hear the sound of her voice again. And, worse- that I would forget what it sounded like.

Fast forward 2 years and it has slowly happened. The remnants of my mother's sweet, calming, familiar voice have drifted away. The inflection-the soft soothing sound and the incessant questions no longer exist in my mind. Those corners and crevices have been scrubbed clean and the last little droplets have dried into distant vapors. It has happened a lot faster than I expected.

I don't think I realized the weight I was carrying or the progression of losing the sound of her voice until this past clinic appointment. We arrived as we always do, greeted with kindness and enthusiasm to catch up on our lives. Our first visit was with our local MDA representative. She smiled as she pulled out an Ipad, a recent donation to the clinic. Already familiar with the device and its capabilities I began to write notes and questions for the rest of the clinic staff. I was turned slightly away, giving my mom space to visit with the rep, when I heard her speak. A simple yet timeless phrase- "hi, how are you?" Surprised, I looked up to find that it was not my mom who had spoken but the Speak It app on the Ipad that had voiced those words. I realized in that moment, that device-that automated female voice- had replaced every memory I had of my mother's voice. My spirit was crushed. My eyes intensely filled with tears and my chest began to cave in as I swallowed the existence of this new reality.

It's in these moments that you are reminded of the gravity of this disease. You come face-to-face with the giant standing in front of you beckoning you to claim defeat. It's another sling shot pulled back aimed at each one of your weaknesses.

I may have lost the ability to physically hear the sound of my mother's voice-but, her spirit, her gentle encouragement and her passionate-stand up and fight attitude, still shout so greatly inside of me. ALS has stolen pieces of my mother- but, rest assured that with each item stolen that much more is gained. My spirit and my life have forever been changed for the better.

Friday, February 8, 2013

The Power of Words

There has been an incredible renewing lately. A splattering of dew drops covering everywhere I look-that feeling of growth- a fresh rain being showered upon you turning your frosted bud into brightly colored petals.

Words are powerful. Translated from the chaos inside, they speak life and they speak death. I have seen lives transformed with one word. Tears are halted; laughter erupts and bubbles over, hope begins and spreads like wildfire. And, to the opposite-I have seen lives diminsh with one word-broken and tattered claiming defeat.

Those droplets of encouragement have become so intertwined inside of me and I am ultra-aware of the community to which I belong. The very roots of my existence have been watered and nurtured with quiet whispers of friendship and the deep pruning efforts guiding me along. Never did I imagine that I would find such strength in a community of people stricken with tragedy.

My favorite thing about this incredible community of people, who have quickly become family, is the passion and fierce desire to change the circumstances of this world- to stand up to the definition of a diagnosis. To run a course that out-lasts every time-line. To leave a hand print everywhere they touch. A fire ignited burning rapidly to have their voices heard.

Will you join me and stand up to the labels you have been given and speak life into the lives of others chasing a time-line? Will you continue to water and nurture the roots around you and refuse to participate in the devastating destruction of careless words? I really believe this community of leaders, advocates, patients and caregivers can alter the outlook at a time.