A beautiful poem about Chiari.
“The Reason “We Walk”…
We walk today for those children, who don’t yet know their fate;
The word Chiari they’ll one day learn, & also learn to hate;
We walk this walk for mothers, who try to hide their pain;
& try to teach their children how to dance beneath their rain;
We’ll walk now for the parents, who feel completely stressed;
While at their child’s bedside feeling totally helpless.
We walk for all of the siblings, who have to act grown up;
& sometimes take a second place, when times are really tough.
We walk these steps for patients, who are told that they “look fine”;
Despite the meds they have to take, to get them thru that time;
We walk for the many who suffer, in silence still today;
Being told Chiari is so rare, thinking alone they’ll have to stay;
We walk so at our next appt, we won’t have to spell the word;
Because in America, Chiari’s something they’ve now heard;
We walk for you who’ve loved us, even thru the hurt;
& joined us here today to wear, your Chiari Walk T-shirt;
Mostly we walk today these steps, holding another’s hand;
& will continue to walk these steps, simply because we can;
We walk for the volunteers. Sponsors, donors and our friends;
Who’ve made today all possible & are with us til the end;
We walk because we’re tired, of having to hide what’s wrong;
We need better treatment options. We’ve been guinea pigs for far too long.
We’ll walk because I want better, for my own daughter & my son;
So God forbid, they EVER hear, you have Arnold Chiari One;
We’ve organized this for you, because our families are ok;
With missing us for months to plan this one September day;
We’ve now walked eight years together, we hope to meet again;
We’ve share our stories, broke bread & met ~new Chiari Friends;
We’ll walk because you hold our hands, to catch us if we fall;
We’ll continue to meet here yearly til, we Conquer Chiari …once & for all!
Chiari Survivor & CCWAA Site Organizer 2009-2012
Excerpts from a Friend who is a Chiari Survivor!
This is well written
People assume you aren’t sick
unless they see the sickness on your skin
like scars forming a map of all the ways you’re hurting.
My heart is a prison of Have you tried?s
Have you tried exercising? Have you tried eating better?
Have you tried not being sad, not being sick?
Have you tried being more like me?
Have you tried shutting up?
Yes, I have tried. Yes, I am still trying,
and yes, I am still sick.
Sometimes monsters are invisible, and
sometimes demons attack you from the inside.
Just because you cannot see the claws and the teeth
does not mean they aren’t ripping through me.
Pain does not need to be seen to be felt.
Telling me there is no problem
won’t solve the problem.
This is not how miracles are born.
This is not how sickness works.”
― Emm Roy, The First Step