I finally had the review of my “neuropsychological evaluation,” the test that identifies what parts of my brain were most affected from the encephalitis. When I left the neuropsychologist’s office, I cried. And cried some more. It finally hit home that I have a brain injury. It happened. Why I have been able to write about my experiences but not truly internalize that this brain injury is real, I am not sure.
The report is very clinical with complicated phrasing like “impacted white matter connectivity” and yet, it’s achingly personal because it shines a light on how I think and reason. Like the good student I have always been, I was excited to see high numbers in areas that I know are strengths of mine. And I have enough self-awareness to recognize that a brain injury isn’t going to affect how I do on visual puzzles. I have seventh-grade geometry to remind me of that. What tore me up though was the summary of the damaged areas followed by the phrase, “these results are severely discrepant with her intellectual profile.”
It stuns me. There’s broken bits inside my brain. I remind myself that this is a point-in-time result, not an indication of my future. I am still healing.
People have asked me how I keep going. Sometimes they even say, “I couldn’t do it if I were in your shoes.” I don’t find that motivating. I only know that I have to take a step forward and another step. There are hard days, difficult moments and lonely experiences. But without fail, I have always found something sunshiny, a spot of joy or laughter to fuel me for another day.
Cartoon courtesy of Dharma Comics
Sometimes I find the sunshine myself, sometimes it shows up in unexpected ways like silly GIFs that my app-obsessed aunt texts me.
Yesterday, the sunshine found me. I opened a card from my mom that I had saved for a rough day (coping strategy in play right there!) and it read, “If it’s true that adversity builds character… your character’s been getting quite a workout lately!” She also included this bible verse, “Have I not commanded you? Be strong and courageous. Do not be scared; do not be discouraged for the Lord your God will be with you wherever you go.”
It’s true, I’ve felt surrounded by love every step of the way. I wouldn’t have known that I could survive something like this but I am doing it each day, one step at a time. Hopefully with love and grace…
With Grace ALWAYS 
Well, that sounds familiar. I had some results that were really, REALLY discrepant from what would be expected of someone like me. Particularly in terms of my short-term working memory capacity and my resistance to short-term interference. Seriously, I degraded to the 12th percentile on one of those tests — really, really low, compared to some of my other results — which put me close to the very top 1%. Very uneven… and very distressing. I thought I was so screwed, when I heard the results. It threw me off for weeks.
The thing is — and you’ll find this as you recover — our systems are designed to figure out how to do what we really want to do. Sometimes it takes a long time for our brains and bodies to reorganize around things, and sometimes it doesn’t take long at all. There are many factors that come into play. But we can reorganize. And guess what – after 4 years of constant work (and I mean *constant*), my life is so much better than ever… but almost all my “scores” have remained basically unchanged.
So, in some ways, I’ve still got real deficits.
Not that it’s stopping me. I think I’ve figured out ways to perform the same functions, cognitively, that maybe can’t be tested. Unless you see someone in action, and you observe them over time, you can’t get a good sense of how functional they truly are. It’s a very human process, and a very unpredictable one… but that’s what keeps things interesting.
Just remember – these are numbers that were designed by scientists who have a very specific point of view. They don’t know the whole you / us, and they’re apparently not clever enough to design tests that measure the level of our everyday functioning, happiness, sense of accomplishment, and overall fulfillment in life. Or maybe there IS no test for that.
In the end, we’re all given the opportunity to overcome obstacles and become stronger in the process. My TBI journey has taken my entire life, and I only got help for my persistent issues after 40-some years of struggle. And yet, I’ve been able to turn it all around. There is hope. This is one test. It gives you data on what things you need to work on, but it is NOT the final word on what is possible for you and your life!
Be well – be bold! And get plenty of good rest, clean water, and nutritious food.
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Thanks for the encouraging words! I have spent a week trying to remind myself that it is a point in time, it’s one test and I don’t walk around feeling like I’m somehow less intelligent than I was before this happened. It is funny that you’d share your discrepancies – mine seems to be very similar – my lowlight was a 14% on my auditory memory!
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And it can be really valuable to know that – I can’t fix something if I don’t know it’s broken
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Yes, if you are not aware that you are blurting nonsenses out, how do you stop it.
This is why I appreciate people who are not afraid to speak up in response to what I have said. Most of the times, it has been in an abusive way. But still in the long run, it helped me to monitor myself more. I get along in the world much better. Very well.
But it takes a toll to be monitoring yourself like this.
I tell my very good therapist that my brain gets tired. She questions.
But even if she doesn’t get this symptom because its not a nail and she holds a hammer, she is open with me. She doesn’t go tell others that I make up things.
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