For eleven years now. You crept into my life and terrorized me by shriveling, shrinking, twisting, warping, gnawing every fiber of my being and holding me hostage in my own body.

You think by taking my independence, my home, my ability to feed myself, dress myself, walk and talk return a kiss a hug a smile, You have defeated me? 

You think because I can’t drive my car down my favorite country roads, through my favorite covered bridge. Chasing hot air balloons with my camera focused for that perfect shot to add to my scrapbook, You have defeated me?

You think because I can’t pick up the phone to wish happy birthday to family and friends or because I can’t baby-sit my grandsons, sing silly songs or catch that priceless photo of the little one shouting mama Debbie look what I found! Pulling a tadpole from his pocket. You think You have defeated me!?

THINK AGAIN "Amy-o-tro-phic La-ter-al Scle-ro-sis"

I have my mind, my heart, my eyes, my hearing. You will never take these precious gifts. You can never destroy my ability to make logical decisions, harden my heart with bitterness, take away the colors, textures, patterns that make up the beauty that surround me or silence the laughter, music, songs, softly spoken words of love, or the chatter of birds that wake me.

There is technology that allow me to take back what You have stolen from me. Technology that speaks for me, giving the power within me to sing those silly songs to my grandsons, to escape the reality of Your never ending ripples of fasciculation that You are so notoriously known for. Technology that gives me hope, courage, and knowledge to go on living with dignity, honor and grace.

You may one day take my breath but You will not take my soul.

You don’t scare me any more.
Debbie Tope