Hi Everyone,
Our day started in the usual way. Between 5 and 6am I join the nurses to assist with changing Corey. Each morning as the nurses give her a bed bath to clean her incontinence, I take her bedding to hand wash the sheets and soiled bed pads before the first load of laundry begins for the day (typically there is at least three). I am amazed at Corey’s acceptance of her morning ritual. We can only hope that our nonchalant manner assures Corey that there is no need for embarrassment. Unfortunately, today Corey needed two bed baths which in turn gave me two showers and two changes of clothing before I was ready for work.
She had a morning speech therapy session. When I came down after my 2nd shower, the nurse and therapist were concerned because Corey wasn’t participating in therapy and didn’t seem “her self”. I approached Corey trying to assess her temperament.
I told her, “You seem off today honey, what’s the matter”?
Corey wrote her response; “I’m sad”
“Why are you sad”?
She wrote; “This is bad”
“What’s bad Corey”?
“Me”
My heart nearly broke and my eyes welled up with tears. As difficult as this is to “read” and “hear”, Corey is expressing emotion and that’s tremendous progress!
Corey, do you remember the video I showed you from February 19th and 20th? You couldn’t move your right hand. I know this stinks! I know you’re sad. This “Was” bad, but today it’s good. Today you are holding a pen and writing how you feel. Today you can tell me how you feel and what you’re thinking and I can understand you. I know that 6 months seems like a life time, but it’s not. You have gained so much in such a short period of time. You don’t remember it but I have the video to prove it!
I begged Corey, “Don’t you give up”. Her reply; “I won’t”
“I’m so proud of you”. “Are you proud of you”?
Corey spoke, “I AM”. The speech therapist was at a loss for words. Corey not only spoke a new word, she spoke a phrase.
Honey I received a call from a young woman who is a professional Jazz singer. She is actually a celebrity in Europe. Her professional career only began 3 years ago. Ironically, she is a survivor from a TBI and spinal cord injury. Her accident was in Philadelphia in 2003. A friend of ours wrote her to ask if she had written an inspiring song based on her accomplishments from her recovery. If her response was yes, please forward to Corey to use as an inspirational tool. He shared your carepage and the Fox News piece along with our contact information.
We spoke for 2 hours. The young woman, currently 26 years old, shared with me that she was 19 when she was struck by a vehicle in Philadelphia. Although she suffered a TBI, it was not as severe as your injury. However coupled with the spinal cord injury, she could relate to you. In fact, she shared that your story went straight to her heart. She was in a body cast for one year. She could not speak for two years. She had to re-learn how to talk and walk again. Although she can walk, she still requires the use of wheel chair after standing/performing for 30-50 minutes. She wears sunglasses because her eyes are extremely sensitive to light. She still suffers from vertigo but can manage the daily affects of her dizziness. She had to move to a warmer climate because she can no longer physically tolerate the cold weather.
She shared her therapy challenges, insurance challenges as well as her coping techniques to live with a life she didn’t choose for her self. She was thrilled to hear and read our carepage. She said that her mother kept a daily journal and it was invaluable to her once she was capable of reading it for her self. What struck me the most was her asking if you journal. I told her not yet. She told me that you will get to a point that you will begin to express your emotions. Once that happens, capture those thoughts and record them. Read them back monthly so you can hear your progress in your own words.
Today was the first time you’ve expressed any emotion or commented on how you feel about your injury. Now that you can express your thoughts, I will record them. You can share with us what you think and feel. This is your story of recovery. We can only imagine what you are thinking and trying to say. You have spoken daily to us without words and we have learned so much from your silence. Now you have a voice. Corey there is more to learn and understand if you would allow us to listen.
To all our friends;
Our friend also shared that Corey may be afraid that she will be forgotten. As people in our lives carry on (which is natural and normal), she is feeling trapped unable to move forward. All of Corey’s friends are leaving this week and next for college. We can see her demeanor changing. Her frustration can lead to depression. For our friend she began to struggle with participating in her therapy. I happen to speak with friends of mine today about our “new friend”. I shared our conversation and I thanked them for their love, support and encouragement to me. They looked at me surprised. They didn’t feel that they have contributed any emotional support. They verbalized what many of you have said; you want to help but don’t know what to do, how to do it or what to say.
I explained we both still need each of you! I am trying to figure out what it is we need and what to ask for. This road is long. Our new friend was not independent of her mother until 2 years ago and yet she continues to work on her daily healing and recovery. What I can tell you is the letters you write, random phone calls, emails, text messages, even the casual salutations of “how are you today” mean more than we can express. Your words keep us anchored so we don’t feel lost and alone. So for today, this is what we need. This is what Corey needs; daily contact from the people that love her. She needs your words of encouragement to soften the frustration that her body is not moving at the same pace as her mind and spirit. We will work each day to give her that sense of normalcy. We will stand each day, cook each day and encourage her to “tell us” what she wants to say. Most importantly we will continue to read your notes of love, support and unconditional friendship! xoxo