Nothing and no one can ever prepare you for a disease such as ALS to overtake a member of your family. ALS stands for (amyotrophic laterals sclerosis – also known as Lou Gehrig’s Disease). ALS not only slowly drains the life out our loved ones, but it has a ripple effect on the whole family, ripping our hearts apart as we watch someone we love slowly dissolve. A disease like this always seems so removed, so detached from reality….until it’s not.
My mom’s best friend, Sharon was diagnosed with ALS the beginning of this year. They have been friends since 9th grade. Sharon’s daughters, Chrissy and Rendee are the sisters I never had by blood, but inherited through our mom’s lifelong friendship. To say I love these people is an understatement, and to say that the call my mom and I received from them learning of Sharon’s diagnosis, the one knocking all of the wind out of you and shoving your whole stomach up into your throat, to say that call was heartbreaking would be putting it lightly.
We are all now in the thick of it and dealing one day at a time as Sharon’s disease progresses. She’s lost the use of her vocal cords, her tongue, her voice is gone, both hands are almost completely atrophied, which makes it almost impossible for her to communicate.
My heart is shattering into a million pieces. Writing this to all of you, makes it seem even more real and finite.
Bearing witness to Sharon’s journey has given me a new found appreciation for all of the little things we take for granted. How every strong muscle in our bodies move at will, to dance, to run, to laugh out loud or just simply holding someone you love.
How movement of the tongue helps us to chew, the savoring of solid food, and something very dear to me, my voice. I couldn’t even imagine being without a voice, knowing it will never come back.
But for now, I do have a voice. Together, we have our voices! Voices to be able to raise awareness to help ALS sufferers and their families, and to give Sharon a voice where she has lost her’s.
May is ALS awareness month and I’m asking you all to join me on May 22nd for the “Don’t Talk-A-Thon,” where 100% of the funds raised will go directly to Project ALS, accelerating the pace of incredibly promising research. In honor of Sharon and all ALS sufferers who have been robbed of their speech, I will be taking a vow of silence for at least an hour. You can either sponsor me or take the pledge yourself and spread the word. Please click here to learn more. Let’s kick ALS’s ass together!