Monday, February 18, 2013

Going public...

This past week I decided to participate in the Walk to Defeat ALS in my area.  I am now really excited but, I have to admit, the idea was intimidating at first.  That may seem silly, considering what I am living with every day and the fact that it's just a 2 mile walk after all, but there is more to it for me.

Making this decision means "going public".  What is more public than writing a blog open to the world? you might wonder and you'd have a good point.  The thing is, even though I freely share my story with the world, the people I see everyday in my neighborhood and community do not know my story.  The baristas at Starbucks who know my name and my drink order have not been aware of the reason behind my struggle to say "trenta black iced tea with no water and no sweetener".  (It's a mouthful under normal conditions but imagine saying it with a minimal ability to speak).  The kind pizza shop owner who already knows my order when I call and struggle to say "I want to order for pick up" has no idea why its so hard for me to get the words out.  The librarian who signs to me thinking I am deaf, an often correct assumption to make in our community, does not know the real reason that I speak this way.

Taking on this walk means facing these people whom I regularly share a smile with and sharing the truth behind why they know me as Sam.  It means saying out loud that I have ALS, and then explaining (briefly) what ALS is.  It means no more hiding from other people's sympathy and concern.  It means admitting I have a weakness, an illness.  It means doing all of this face to face and not behind the keyboard, which is a different thing completely.

So, I am Walking to Defeat ALS on April 6th in Jacksonville and my family and friends in California are joining the walk on April 13th in San Luis Obispo.  I hope that you will join my team, Sam's Twysted Ride, on either coast to help spread awareness and raise funds for pALS assistive care, research, and ultimately, to find a cure for this devastating disease.  Please help me now so that, in the future, no one else will have to go public with this news.

Thank you so much for your support!!

1 comment:

  1. Chrystie (ok, Sam will take me awhile to get used to)...I haven't touched base with you since January of 2011 (has that much time really gone by?). I was floored by your email about the walk, your health and your blog. I am inspired by your strength and your spirit, honesty and soulfulness in your writing and courage. You are a beautiful person inside and out. I will support your walk, I will keep you in my prayers and I will touch base off line.