I've said it over and over but my little sis and I are so connected. We seem to experience life at the same time in two different states. From little things like getting a hair cut to big things like this...
Kayla was recently in Portland for work and met Carol Zoom. At the same time that she and Carol were getting to know one another Cliff and I were watching a dvr Oprah about Michael J Fox, Parkinson's and Dystonia. Cliff's dad suffers from Parkinson's so I'd saved the show so that we could watch it together.
It was so much more than an hour of television. It stirred something in me. Rogers woke up one day and was 90 degrees bent over to the right. I was reminded that we are all truly just one wake up away from dealing with something unimaginable. No one goes to sleep and expects to wake up practically folded in half and in horrific pain. There was a day that I went to bed and woke up having trouble breathing. There was a day that Michal J Fox woke up and was forever changed. There might be a day that you wake up and are forced to deal with a new reality.
Rogers said that one of the things that she deals with is people thinking that she has less of an IQ because she is dealing with a disability. I identify with that from my time spent with my chin sewed to my chest. As I walked the hospital looking down at the floors I could feel the stares piercing through me. I was no less intelligent then the day that I walked into Mass Gen but the looks of pity and confusion that started that day taught me so very much! Just because someone is dealing with being bent in half, having a trach tube, shaking from Parkinson's or have their chin sewed to their chest it doesn't mean that they should be sent directly to the short bus. Aaaand if they are on the short bus it doesn't mean that they are intellectually challenged.
While I was on recovery from tracheal surgery I had the most profound moment. It was my first day out of the house and we were running an errand to Home Depot. My head was still somewhat tipped down, I was still not talking and my neck was angry red and puffy. It was obvious that I was working hard just to be up and walking. As I was walking to the door a paraplegic man was rolling past me. As he blew on the tube to zoom right along, we caught eyes and exchanged a smile. It was a moment of truth in my life. He was the first person I'd met out in the world that really saw me. He didn't look sad for me or confused, he didn't look away or furrow his brow. He just smiled and then zoomed on past.
You never know who you'll meet out in the world or what their story is. Should you happen upon another human who is dealing with a different set of circumstances than your own, look them in the eye and smile.
Thank you, Carol Zoom for changing my sister that day. Thank you, Michael J Fox and Rogers Hartmann for sharing your story on Oprah. Thank you, man in the chair at Home Depot for really seeing me.
and ps- totally off topic but equally important...Kayla, Thank you for sharing your stories in written words. They always move me. I love you.
