A New Normal By Daniel George (Age 15)

Hi, my name is Daniel George and I am 15 years old. My brother, Jacob, sustained a severe traumatic brain injury ten years ago. Jacob was an average 7-year-old when the accident happened on a Halloween hayride. Because of the injury, Jacob is quadriplegic, cannot see, cannot speak, cannot eat, and he requires around the clock care. But that does not mean he cannot communicate. We know that Jacob loves it when our family spends time with him because he will smile. We assume he can hear us and comprehend the environment because he reacts to things by laughing.

Even though there is so much uncertainty in an injury sustained over ten years ago, I know Jacob enjoys our company. So I watch T.V. with him, take naps with him, tell him jokes, and try to help my parents take care of him as much as I can. I was so young when it happened that the life we live right now is the norm. I do not really remember much about Jacob before the accident because I was only four. What I heard from my family is that he loved spending time with me when I was younger and he still does to this day.

I still find it hard to zoom out and understand the real depth of the impact of what happened to Jacob on me and my family. I want Jacob to communicate because that is the best way to get to know and hang out with my brother. Laughter is great but hopefully, that is only the tip of the iceberg for Jacob’s ability to communicate with us. We tried to do many things to combat Jacob’s locked-in syndrome, but not all of them have been successful. We tried to have him communicate with his eyebrows. I put aside 30 minutes a day to try to teach him to raise his eyebrows as “yes” and leave them where they are as “no”. The results turned out to be inconsistent and we decided his tremor might make answering very random. Now we are trying to use a Brain-Computer Interface (BCI) to communicate with him. Ms. T. Vaughan, a Research scientist at the National Center for Adaptive Neurotechnologies, showed me how to set up the BCI on Jacob. If we can use the BCI regularly, hopefully, I can work with him on it a little bit a day and show the data we collect to a professional. Getting the opportunity to communicate will change Jacob’s life dramatically. For example, he would be able to tell us when he is hungry or when he is uncomfortable. According to braintrauma.org, 2,500,000 people suffer from a traumatic brain injury yearly. I believe that research on BCI will have the potential to improve the quality of life for people with traumatic brain injury. It might be some people’s last hope and giving back that bit of life they lost would be wonderful.

My goal is to get to know Jacob more, make his life easier, and help the millions of people that are in the same situation as my family. Even with very limited means of communication, Jacob has a big personality and he is not afraid to show it. He is never afraid of going out to public places (except maybe the doctor’s office). As long as he has the energy for it, he comes with us anywhere. Everyone loves to see Jacob and hear his laughs. At social gatherings our friends make sure to take the time to say hello to Jacob.

Most importantly, we don’t hide our lifestyle even though it is so different than the norm.

 

This Siblings Flaunt has been published in partnership with the fabulously flaunting organization, Siblings with a Mission. 

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