I recently had an eye opening experience with a cooking attempt. I have often said that my brain uses 3x as much energy to do something than prior to my brain surgery. I don’t know where I came up with that number; it just appeared so I went with it. I found a recipe that had about a dozen ingredients and only 3 successive steps, and decided to take on that challenge. The steps were not overlapping. I pretty much had to prepare the ingredients first, then complete the 3 steps. What I discovered during this exercise was that my working memory isn’t working and/or my brain doesn’t trust the information it has so it is overworking. I would read the step, measure out and organize the ingredients for that step, start doing whatever the instructions said, and then question whether everything I was doing was correct. I’d then return to the instructions to re-read them, then triple check each detail of that step (the ingredients, the amounts, the heat, the time, etc.) and I’d also read the next step to make sure that I was prepared for whatever needed to happen immediately after this step was complete. As soon as I completed this second-guessing, the third-guessing would start. This continued until I got to the next step, at which time the entire process would start again. So my brain took these three steps and complicated them by making them overlapping, and questioning every single piece of information I had and every action I completed. It was EXHAUSTING. It was also some really useful insight into WHY things are so difficult for me now. It’s almost like every single thing I do is a test, with someone observing me and assessing my performance. That someone just happens to be my own brain, and it’s doing double duty as both the DOER and EVALUATOR.
So there’s a lot going on in my brain that leaves little room for other things to be accomplished. This is a new example of my limitations for me. I had been aware that my brain can get overstimulated in new environments or with noisy/crowded public places, and it’s fairly obvious what is going on there. That is my sensory processing limitations saying hello. But this was happening in my own kitchen, with little sensory stimulation and so it was insight into my working memory and information processing limitations. A previous doctor suggested that my information processing limitations may actually be a product of my sensory processing limitations, specifically related to my vision issues. This exercise suggests to me that is not the case, and that there are information processing issues as well. Whether it’s my jacked working memory and/or my lack of confidence in having all or the right information, my brain can seriously complicate what appears to be a very simple activity. It’s good times.
It has taken my brain 3 sessions and creating my own materials to truly understand the concept of neuro-fatigue through something called the Cognitive Energy Scale. This scale is a bell curve that shows level of functioning from the low end through optimal to another low end due to over stimulation or exertion.
This scale was presented to me as a way to operationalize the concept so that my therapist and I could speak the same language about how I’m feeling. I understood the concept BUT my brain had real trouble with converting this curve into a Likert Scale of 1 to 5 with 3 being high and 1 and 5 being low. Likert scales are linear with one end negative and the other positive.
We had some discussions about whether the numbers would work at all and whether we should change the numbers to something like: Way Under, Under, Optimal, Over, Way Over. That seemed like a good idea. So I went home and started brainstorming. After revisiting my last post with bitmojis and realizing how many there are and how many different emotions they convey, I decided to recreate the CES with bitmojis that represent the different ways I feel at different points on the scale:
I love this for multiple reasons. It’s simply way more fun to look at than a bell curve and it conveys the various feelings that make up the different lows and highs. There’s lots of variety there and sometimes it is hard to explain, but it is very easy to understand the difference between the gas completely empty on the far left and the drowning on the far right. I’ve also added in my strategies so that it’s all on one graphic. My therapist knew immediately what I was trying to convey with this. For example, I have myself relaxing with coffee and reading a book as an optimal feeling/activity when it might seem to someone else like a strategy to return. But I’m only able to read when I have the cognitive energy to do it. So it belongs up there for me personally. I have light yoga in the strategies, but I’d put yoga that requires more energy into the optimal section as well.
This exercise helped me with the numbers concept too. Now I’m ok with 3 being in the green and 1/2, 4/5 being in the red because I see the concept as more of lane assist in driving where the middle is the green/optimal and veering to the left or right takes me into the low zones, with the strategies helping bring me back into the lane. Rather than worrying about the number, I can now envision the pattern over time created by the ratings and what useful information that will be.
I did say that I’m going to be a pain in the ass patient, didn’t I? My therapist has been using the materials for years and said I’m the first patient pushing back on them and forcing her to rethink things. I’m having way too much with cognitive therapy.
I enjoy when I find Bitmojis or GIFs or whatever that represent some part of my experience well or with humor. This one is an old favorite of mine because it so brilliantly captures my experience of brain damage:
I recently stumbled upon another one that led to an unexpected experience. I have written many times about my visual deficit, the loss of much of my vision on my left side in both eyes, called Homonymous Hemianopia, resulting from my brain surgery slicing away some of my optic nerve. Previous posts have pictures of my actual visual field over the years since my surgery but they don’t show what things look like through my eyes. People have difficulty understanding what it really means, but this does a pretty good job of illustrating my visual deficit:
It’s not that I see a black space; it’s just that I take in what I do see and there’s nothing else unless I go searching for it. This particular image in an example, but backwards, in that I’m missing the left side and see what’s on the right side. So I created the mirror image to better match my actual vision. This one is what I see when I look in the mirror. It is also how I see you if I’m talking to you. I am looking at your left eye, on my right side.
The surprise came to me when I looked at this second one on my phone. My eyes freaked out and couldn’t handle looking at this third person view of what I normally see. I did NOT expect that at all. I had to switch back to the first one to settle my brain a little. Who would have thought that I could easily look at the mirror image, but not the correct orientation? I pondered on this for a few days. I have two guesses. The first is that my brain just really hates my hair parted on the opposite side. 🤣 My second guess is that my brain has learned that there is often more information that can be found by scanning left and that I naturally do this now. I think it threw my brain for a loop when there was literally nothing over there but white space. It simply doesn’t compute and my eyes get strained and I have to lean back from the picture while it’s in front of me, even while I’m sitting here typing. I have nothing profound or philosophical to say about this; I just had an experience that I found super interesting and wanted to share with folks who might also find it interesting. I am thankful that my brain continues to entertain me.
This morning I believe I had my first successful application of my STP tool and I am stoked. I have been in a bit of a slump with my brain not doing a whole lot and being extremely fatigued overall. I haven’t been able to watch anything that requires too much attention, so that means lots of SVU and things like Botched or Survivor. I also haven’t been able to read much of anything for almost 2 years. I don’t know if this is because of my vision, my information processing, long term radiation effects, seizure effects or some combination of these. Regardless, it has bummed me out that my pile of books hasn’t been touched for quite a long time. Yesterday I actually picked up that last book that I had been reading and attempted to take a look at the things I had underlined or marked already to get myself up to speed to start reading again. It was pretty clear almost immediately that nothing was entering my brain. I was reading the words and saying them internally, but there was nothing being retained. I was extremely disheartened by this.
I have learned by experience that I need to do something 3 times to be sure I understand the experience. If the first 2 times are the same, the third will confirm the experience. If the first 2 times are different, the 3rd will tell me whether to trust the first or second OR to be aware that each time may be a different experience altogether. That prepares me for moving forward. So this morning was attempt number 2.
I decided to prioritize it in the morning when my brain is most with it. I once again tried to read some of the notes that I had marked from the previous reading. Then I remembered something I learned years ago! Prior to my brain tumor, I had read a book on the relationship between exercise and the brain. The book was Spark by John Ratey. One of the main takeaways from the book was the impact of cardio on the brain’s ability to learn and perform. I remember one study that assessed gym class at the beginning of the day and found that students had improvements, especially after cardio specifically. This book was a huge influence on me after my brain surgery and my focus on doing all that I can to help my brain. I have focused on cardio and yoga for the last 5 years for my brain health.
After reading a few pages this morning, seeing some things that were familiar from yesterday, and remembering Spark, I hopped onto my mini-trampoline rebounder and bounced around for 10 minutes before I sat down to read a little bit. Initially, it felt like I was able to do more than yesterday, so I’m optimistic. My plan moving forward is to bounce a little bit before I want to read. I’m wondering if reading aloud might also be a useful strategy, as that gets more of my overall brain working and may in turn make it take in the information just al little bit easier…And even if it doesn’t work, I’ve tried something, I’m getting in more cardio, and I feel like I’m DOING something.