I was going to begin writing this entry with an apology for the delay and for the structure; it’s going to bounce back and forth between the good, the bad and the ugly. The reason I’m not going to apologize is because THIS IS LIVING WITH BRAIN INJURY.
The Good: I’m still trying to post the summary of the GoBabyGo Café project. When you read it you will be amazed and as excited as we were and are at Corey’s overall progress. It was good to have the week between Christmas and New Year’s off before we headed to Dallas. Again, Corey’s physical and cognitive progress astounded the Doctor’s and tech’s that worked with her. The initial eval scores and physical exam surprised the team. They restructured the therapy they initially planned to an advanced set of exercises. One of the biggest improvements was Corey’s ability to take the IMPACT test. It is a concussion program measuring the severity of her cognitive damage. The test takes roughly 90 minutes. In September, she could not concentrate for more than 5 minutes. This trip, she did not finish the program but could focus for 45 minutes. Parts of her cognitive strides are a direct result of working in the Café and the work she’s been doing on writing her cookbook. Her attention span is a clear indicator of neuro plasticity and healing. Now that we’re home, Corey is beginning to read full recipes and demonstrate her understanding and processing the information. Last night she called out to me, “Mom, I just learned something new. I could add Apricots and Oranges to salsa to make it less spicy and more like sweet and spicy for chicken”. Retention is still her albatross.
The Bad: The challenge with brain injury and neuro plasticity is what appears as regression often manifested by her behavior. Corey’s memory loss is significant. She doesn’t remember we were in Texas last week. Although she can read the calendar, if asked to recall today’s day of the week, date, month, year or season, she will not know the answer. She asks to go to the bathroom 50x a day because she doesn’t remember she just went and will argue beyond reason insisting she’s right and we’re wrong. As she heals and ‘learns’ more, and as she becomes more aware of her environment, her current reality still doesn’t match what she ‘thinks’ reality is. She still doesn’t remember the accident, why her left leg doesn’t “work right”, why she can’t start to drive and the list goes on. On New Year ’s Day she was very, very sad. In fact, she’s been vocalizing her sadness daily. There is a new level of depression emerging. Her inability to produce tears when she cries is a permanent side effect of her injury. Her body sobs yet she cries dry tears. She had begun to vocalize her thoughts. “This isn’t fair that this happened to me”, “When is it my turn to go to college”, “I’m jealous of my friends because I don’t have a boyfriend”, “Who is going to want to love me the way I am”, “I’m tired of trying to get better, it’s too hard”, “I’m sorry you and Caitlin have to take care of me and I’m like this”. We recently lost someone very close to us. Corey is feeling a new level of grief. She asked for her rosary so she could pray for our friend. These moments are beyond tough but I bounce back to The Good…she’s verbalizing a higher level of thinking, discovery of emotions and compassion for others. It’s a spark of emotional maturity.
The Ugly: Monday was the second most traumatizing day we’ve had in 5 years. Caitlin, Corey and I had an appointment, stopped for lunch and headed to the grocery store near our appointment. I have a garlic allergy and didn’t taste the garlic in our soup from lunch. When we arrived at the grocery store, I ran in to use the ladies room because I was sick. Caitlin brought Corey in via wheelchair. Corey was disoriented by my rushing into the store, not recognizing where she was along with the crowd of people they encountered heading to the restroom. Despite Caitlin’s detailed explanation of the surroundings, Corey was perseverating and ramping up to a full blown anxiety attack. I met the girls in the family restroom, tried to help calm Corey’s anxiety and silence her screaming and helped Caitlin as we started back to the car. Unfortunately, I was still sick and Corey was aware of the stares from the people shopping in the area. I asked Caitlin to take Corey to the car and I returned to the lady’s room. The Ugly became the Horrific. Corey held the wheels and tried to stop the forward motion of the chair with her right foot on the sidewalk. When the girls approached the car, Corey not only unbuckled her seatbelt she tried to stand on her own while hitting Caitlin, screaming and cursing at her. When Corey hits this level of rage, she can be very mean and physical to both of us. A passerby approached Caitlin and yelled at her as if she was an abusive caregiver. Needless to say, Caitlin was emotionally destroyed and when Corey was settled in the car, she had no memory of the incident. She was patiently waiting for me when I returned. My father tried to console me by suggesting the passerby could have been acting out of compassion for Corey…I disagree. Compassion would have been approaching the girls asking if there was anything she could do to help NOT judging Caitlin on an assumption of what her perspective of the situation was.
This is an example of what DOESN’T get written in the carepage. This is brain injury; the good, the bad and the ugly. These three facets of reality exist in our life every single day. We MUST stay focused on The Good…Corey’s behavior is a sign of healing and cognitive awareness battling her memory loss with the frustration at being ‘trapped’ inside of a body and mind she doesn’t recognize. The Good…we look at the list of each incremental gain, each spark, each 1st and that list is longer than The Bad or The Ugly. In fact, it’s actually **** GREAT! xoxo