It was a long but productive day in D.C. yesterday. Our goal was to discuss networking opportunities with members of Congress and the Senate to further educate the legislators on Traumatic Brain Injury, including lack of funding for research, critical funding to expand the acute care length of stay and long term rehabilitation.
We also wanted to share the Brain Injury Association of America’s plea for support of the reauthorization of H.R.1098. The TBI Act, H.R. 1098 was introduced by Reps. Pascrell and Rooney, co-chairs of the Congressional Brain Injury Task Force. This bill will reauthorize the current programs relating to TBI and also will move the state grant and protection and advocacy grant programs from the Maternal and Child Health Bureau to another agency with the U.S. Department of Health and Human Services (Congressman Pitts chairs the committee within this department). The move acknowledges the impact of TBI across the age span, including older adults and returning service members/veterans.
Our first stop; Congressman Scott Perry. Rep. Perry was actually in session but asked his Chief of Staff to pull him out so he could meet Corey. We arrived a little early, met his full staff and were escorted up to the hearing room. Rep. Perry stepped out but asked his chief aide to step into the hearing to take notes in his absence. He then spent the next 40 minutes with Corey!
Rep. Perry has two young daughters. He was anxious to meet Corey and witness her progress personally. She interacted with him and his staff; who requested she move to D.C to become their personal chef. We brainstormed on possible future networking opportunities with his colleagues. Some of his colleagues randomly stepped out of the hearing for other meetings but Rep. Perry took them aside to introduce them to Corey and her story. We met 3 new contacts that will be hearing from us!!
Congressman Pitts was our second meeting. His meeting was very important as it is his committee that could move the TBI Act out of Committee to the floor for both the Senate and the House to vote for its reauthorization. He asked his Director of Legislation to attend an information hearing on 1098 scheduled for tomorrow.
Our final meeting was with Congressman Bill Pascrell. Rep. Pascrell spoke on Corey’s behalf on the Fox national news piece in 2011. He and I have met 3 times during the interim at various TBI functions. He was very anxious to meet Corey and witness her progress. At one point, Rep Pascrell asked Corey if she understood why she came to D.C and what the fuss was about to tell her story. Her response; “other people will get help because of what I do”. Congressman Pascrell looked at me, smiled and said, “she gets it”!
Congressman Pascrell generously spent an hour with us and has asked if he could continue to work with us. The Congressional Brain Injury Task Force is bipartisan. If it works out, the Task Force includes survivors as guest speakers for some of their hearings. He asked Corey if she would consider coming back to speak. Wouldn’t that be amazing!
Corey handled yesterday’s visit very well. In fact, I was amazed at how social, calm and relaxed she was. The meltdown came on the drive home from Wilmington and carried into today at Bryn Mawr; her stranger anxiety was much, much higher then it has been over the last several months. (I think it’s a travel hangover). She doesn’t remember our trip. She doesn’t remember meeting the Congressman or discussing her progress. The anxiety of not remembering was the catalyst to today’s reactions.
Despite her confusion she did participate in her OT/PT evaluations. Once again we are up for reauthorization for therapy. Elaine recorded an increase of 5 degree’s in six different motions for Corey’s left arm. The greatest increase was moving her arm from full extension, bending at the elbow to touch her neck with the tips of her fingers. Just in case anyone thought we were sitting at home eating bon-bon’s, her movement not only was more fluid but the measurement increased 20 degrees! Elaine has now renamed this motion “the bon-bon move”.
To ease Corey’s stranger anxiety Natalie took us to a quiet, secluded hallway at the front of the building. The hallway runs the width of the building, loops around a small connecting hall to join the parallel hallway back to the lobby. Corey did not want to participate. I told her I was going to film her for JohnPaul and Caitlin to watch. She agreed to get out of her wheelchair but didn’t look happy. As soon as I called out, “Ready, start”…she broke out into a huge smile and waved at the camera!
Corey not only walked the full length of the first leg, she looped around a second time. I think it was her longest walk to date. She then repeated a “timed” walk. Her current pace blew away her last timed test. I think I will be filming for “the kids” from now on!
Part 3 of today’s evaluation was to walk up/down a staircase and take a quick measurement of the range of motion on her left foot. If you recall, we’ve been worried Corinne’s presence contributed to drop-foot. She regressed from +7 to 0. We’ve been working hard over the last 2 months at home and at Bryn Mawr to not only strengthen her leg muscles but especially increase the range of motion for her left foot. Natalie reported both feet are at a +7!
What a journey this is. I keep thinking about Corey’s progress, the people we’ve met, the friends we have, the love and support of our family and our community. Who would have thought we would be where we are today.
~ One doesn’t discover new lands without consenting to lose sight of the shore for a very long time ~ Andrea Gide (We not only lost sight of the shore, we almost lost our boat!)
Every new path requires us to leave what was familiar. It’s easy and comfortable to stay with what we know, clutching what we have, working to keep it steadfast but sometimes life has a way of forcing you to change direction. If we are not willing to move forward, we’ll be left behind. “Losing sight of the shore” can cause sea sickness but imagine the fruit yet to be discovered when we land! xoxo