Reading more of Left Neglected has gotten me thinking more about my experiences over the course of my diagnosis and treatment. The main character gets released from rehab and goes home to discover that the room in which she imagined resting and having coffee was now her mother’s bedroom and that there is orange tape all over the place highlighting the left edges of things to make them more noticeable to her brain. I was going to say that her environment is both familiar and different. But really so is her experience inside her brain. Ultimately, everything is both familiar and different at the same time. This is certainly an experience that I can relate to that permeates through my life to this day.
One thing that has remained firm for the character is her self-identity, in that she is in a stage where she is “going through something” but does not see herself as different. She is pushing for things to be normal, to stay normal, and seeming to ignore the obvious obstacles to that. They don’t get a handicapped parking tag because “she’s not handicapped”, though she has great trouble walking 4 blocks to a restaurant, even with help from her cane and her husband, and wishes the whole time she had gotten that tag. She has to use the restroom in a restaurant but doesn’t want her husband to go into the women’s room with her. She makes it in there, chooses not to use the handicapped stall, then regrets all of her decisions when there are no grab bars and she winds up having to call her husband in to help her get up and get dressed anyway. Although part of it may be stubbornness, I think more of it is that she still sees herself as the same person she’s always been. She’s just going through something; she’s not different.
I assume the character will overcome this at some point, and certainly I did as well. I am not sure when it happened that I went from “a person going through treatment for a brain tumor” to “I am a person with a brain tumor who has visual and cognitive impairments and can no longer drive or work and my life is different now”. Perhaps there’s always a little bit of transition back and forth from these 2 stages too as every single day is a learning experience that shifts how the next day will be perceived. I highly recommend this book to anyone who wants a glimpse into the mind of someone going through a journey like this. My blog can only provide so much to you fine folks. 😉
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.