This weekend we began preparing our presentation for the Brain Injury Association of Pennsylvania’s Annual Conference. This year’s topic: Expanding our Horizons through Knowledge, Services and Support.
Part of our presentation will be a short documentary highlighting Corey’s rehabilitation journey. We are working with a local film company; Freedom Videos. We’ve pulled a combination of photographs and home video footage to represent Corey’s journey of recovery. Looking at a brief preview this weekend, it will not only enhance our topic but I believe the progressive highlights will also have an incredible impact on the participants. After the conference, Freedom Videos will create a ‘commercial length’ piece that will be sent to Washington and Harrisburg as we continue to work towards legislative changes for long term rehabilitation coverage.
Corey and I reviewed some of her recovery footage today. She was getting frustrated as she was trying to open a bottle of vitamin water. I showed her a piece filmed in August of 2011; two months after we came home from Bryn Mawr’s inpatient stay.
She had a box of crayons in front of her. We asked her if she could pull a crayon from the box. It was startling to look at her in this footage. She was very thin. There was a brace on her left hand and forearm. Her right arm was mobile but she could not control the spastic shaking of her hand. She had a skeletal expression as she was unable to move or control her facial muscles.
She reached forward; her pointer finger and thumb shaking, trying to pinch the sharpened tip of the crayon. As she lifted the crayon it slipped from her grasp. She tried repeatedly until she could pull it from the box. This simple task took more than 5 minutes.
C – Who is that?
M – That’s you when we first moved home
C- No way!
M – Yes, you were very sick and have been learning to do everything as if you’ve been reborn.
Corey continued to stare at the video.
The tremor of her hand caused a spastic release as it flew across the table. She continued her attempts to remove a single crayon from the box. 8 minutes later we handed one to her. She grasped it with her pinkie and ring finger; she stared at it awkwardly knowing it was incorrect but unable to fix it. We asked her if she could move it on the paper to color. She placed the crayon on the paper and moved it to the left and right leaving three small lines. We joyously praised her; “That’s good Corey, good job”!
Corey interrupted with an incredulous tone; “That’s NOT good”
M – It was back then! You reached for a crayon, pulled it out of the box and colored! We were thrilled; you showed us a new first.
C – Well that’s NOT GOOD ANYMORE! I can do anything now. (She proceeded to move her right arm and not only lifted but extended her left arm)
M – Look at what you can do today. Now look at yourself in this video again. Look at your left arm. It was in a brace. You couldn’t open your left hand let alone move your arm. Look at how steady your right hand is now, no more shakes.
C – I can color in the lines now and write and type! (Her eyes were filled with pride and excitement. She wore a broad smile)
M – Yes you can! This video is an important reminder to show you how far you’ve come.
~ The down side to this conversation is her short term memory. She not only didn’t recall the video seconds after it ended but when it was replayed, it was as if she’d never seen the video or the ‘person’ before. She once again did not recognize herself.
I’m happy Corey has no memory of the accident. She sporadically recalls memories and stories that place her between the ages of 8-14. She does not initiate memories between the ages of 14-17; yet as we share stories, she can recall some people, places or events that involved her directly. She always remembers names and will surprise us by occasionally remembering specific events from her senior year to present day.
There are some days I wish she could recall her incremental gains. If she could I’m sure it would help relieve the daily frustration of not understanding why it’s critical to push through each day. Unfortunately, each memory lasts for the minute it surfaced and disappears as quickly as it appeared. The memory is masterful at flirting with our feelings of optimism and hope.
We need to remember that new connections are made every day. One of these days the veil will be lifted from her memory. When that happens, I know Corey will begin to truly experience the feeling of pride we all have for her accomplishments! xoxo