A Year of Living Brain-Injuredly

flying trapeze

President’s Day marks a year since I landed on my head from a bad trapeze dismount. I have been cleared medically and cognitively. People look at me and don’t remember that I ever had a traumatic brain injury. I am grateful for good medical care, and a good enough pre-concussion baseline that I can compensate now to appear fairly functional. I am thankful that most people don’t know that inside my head I am still struggling with cognitive deficits. Some friends have asked how I’m doing with the brain injury. This is how I’m doing:

I drop words from my sentences when I’m typing/writing. This happens much more frequently when I’m tired. When I start to feel better I swap out words so that my sentences make no sense. Most days my spelling is atrocious, when it used to be one of my strengths. If I forget to proofread everything, I look careless, distracted, or not very intelligent. To appear competent, work takes twice as long now.

I can’t find the words to express myself. I know conceptually what I want to say, but I literally cannot find the words to convey that idea. I can sense what I want to say, but it remains an amorphous blob of a feeling that never throws back the curtain to present itself. For someone who loves using her words, this is remarkably frustrating. I feel very trapped inside my head. It saddens me that I cannot express myself anymore. I have many blogs that will never be written. I sit quietly as friends converse around me and over me because I’ll never be able to add to the conversation.

I can’t plan or organize or execute an idea anymore. I can’t drill down deep into concepts or analyze issues anymore. It’s like I’ve lost depth and dimension to my executive functioning. My brain literally stops. I start to process something, and I feel it stop, and I can’t force it to go one step deeper. I used to be a strong planner. Now, I can’t even pack for a weekend trip. I know I have to. I know how many days I’ll be gone. I know what the weather will be like there. And I literally stand there looking about, unable to make my brain do anything. It becomes a mad dash to throw things into a bag last minute now. Party planning is like this now. Mornings getting everyone out the door to school and work are like this now. Everything that involves more than one or two cognitive levels of thinking is like this now. On the bright side, this all helps with living more mindfully, in the moment. The flip side of that however is that I haven’t been able to balance my checkbook in a year–I literally have no idea how much money I have, or don’t have.

My short-term memory is shot. I recall general ideas and events, but oftentimes the details are lost. I used to have the most amazing memory–so much so that I never went to class and still excelled in school. It has affected my friendships because I can’t follow-up and ask about things we’ve discussed, because I don’t want to get the details wrong or appear as if I wasn’t paying attention. And after one glass of wine, it is impossible to remember details.

I don’t think my personality has changed (you tell me?). But these deficits make me really frustrated and irritable at times. I don’t know if I’ll ever get back to my original baseline. As the months pass though and there’s no improvement, I don’t have any high hopes. I had hoped to get back on the trapeze. I’m not scared of getting back up there. I’m not scared of falling again or failing. I am concerned though that if I fall again, there is a very real possibility that I will lose even more of myself. That scares me.

Why am I sharing all this? Because as there is more research on brain injuries, and the public is more aware of brain injuries, and parents make more informed decisions for their children on what sports they are allowed to play, I want people to understand the hidden residual losses and risks of brain injuries. I’m still by most accounts functional and “normal.” But I’m not entirely Me anymore either. I want people to consider that when they make decisions for themselves and their children.

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12 Responses to A Year of Living Brain-Injuredly

  1. lori B says:

    Incredibly well said. I was in a car accident on my 21st birthday, and one of my injuries was to the frontal lobe of my brain. I came out of a coma violent and cussing…i spent 2 months in the hospital and started rehabilitation. I couldn’t finish sentences. I couldn’t think of words I wanted to use. When I got got back to college, had to take it one class at a time…found I was leaving out sentences and words when writing papers. I just found I had to go over things several times before finalizing. It was very frustrating…felt like I lost myself. I was angry. Sad. But I got help through things and even went on to Grad school and completed a masters degree. I kept exercising my brain…i read a lot, crossword puzzles, word games…anything that makes me think. My mind has improved quite a bit over time; I needed to get further away from the trauma of the accident…i think that helped over time as well. I hope that as the years continue to pass, you find that you feel more like your old self again or that your new self is even better. I wish you the best. 😉

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    • Lori-thank you so much for sharing your story. You are so brave and strong, you’re quite an inspiration. I am so glad to hear you’ve been able to continue improving–you’ve made remarkable strides! I wish you continued successes as well!! Thank you again for stopping by!

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  2. MomBox says:

    That was really very interesting, thank you for sharing this… you are SO incredibly well-written, it would be hard to tell from your writing that you ever suffered a TBI. The ability of the brain to heal itself and recover always amazes me. And you’re right, more and more brain injuries are becoming more common risks for children in sports these days…

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    • Thank you so much for such kind words. I really appreciate it. Our resilience really is remarkable. And it’s been so interesting to me, that since this happened, it turns out that almost everyone knows someone who has suffered a TBI! Yet no one really talks about it, so finding help and knowing what to do about it is so hard! We definitely need to be informed to make the best decisions for our kids!

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  3. Nora Jessome says:

    Once again, thank you for your eloquent update on your journey. I must tell you that in the last few years I have noticed a trend in my life too (without the TBI). I was reading your blog and saying to myself ‘I do that’ and ‘I do that too!’ This is NOT to make light of your situation, just an acknowledgement that you are not alone; not the only one (for whatever reason) has to proof read at least twice to catch missing words and mistakes, and sadly my cheque book rarely balances – ‘close’ counts in horseshoes and cheque books – for me anyway.
    I have another friend who had a TBI while skiing and I plan to share this blog with her. Stay well my friend!

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    • Thank you always for your support and kind words! I hope your friend is well, and that she does not suffer from any residual effects. It is amazing how different everyone’s trajectory and recovery is with TBIs. Looking forward to seeing you soon!

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  4. judysbirds says:

    How brave of you to take each step forward in this process, and how thoughtful to use your experiences to enlighten others to the realities of traumatic brain injuries. A very dear friend experienced brain damage with symptoms so similar to yours. She is an educator, and like you, she was most frustrated by the inability to communicate as clearly as she once had. ‘They’ thought she would never teach again, thought she would never fully recover her language skills. It took tenacity and perserverance, but slowly, ever so slowly she regained much of what she thought she had lost, and she taught her brain to compensate as well. I hope and pray that with time, your brain ‘rewires’ itself so that the frustrations diminish. Thank you for sharing your experience.

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  5. SBB says:

    Thank you for sharing your journey and providing such important information.

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