I thought I was going to have lots of stories to share about my therapy, yet here we are months into my visits to the brain rehab center and I only just had my second day of occupational therapy (OT) evaluation. The logistics of the appointments (scheduling and transportation) have been more complex than the actual appointments themselves and frankly could even be considered a form of therapy. My evaluation yesterday consisted of everyday tasks that were seemingly very simple things that everyone should be able to do but may become difficult for people with some kind of brain injury. I was given a bill and asked to write a check and the envelope to to mail the check. I was asked to look up phone numbers in a phone book and then dial them on an old phone with buttons. I also had to count change and do some minor arithmetic with coins. The thing about tasks like these is that I know what I am supposed to do, I CAN do them and I can do them accurately BUT I have to really focus and put all of my energy into each individual aspect of the task and then triple check everything.. I envision the gears in my head covered in molasses and moving slowly but with SO MUCH EFFORT. And details really matter to my brain. The bill I was supposed to pay did not have a specific instruction as to who to make the check out to. I spent time scanning everything and finally asked, only to learn that it does not state that anywhere. So I had to decide what was appropriate based on the bill itself. These simple tasks certainly wore me out. And these are all things I could clearly do without a second thought before.
I also got to try out the DynavisionTM Board, which assesses my attention, eye-hand coordination, and reaction times. This one was more fun than the other tasks because it’s like a whack-a-mole with lights but then they also throw in numbers on a small screen that you have to say when you see them. My score on this was below the safe range for a driver. Big surprise. I stopped driving immediately after surgery 5 years ago and I sometimes have to close my eyes as the passenger in a car because there is too much going on around me. So I don’t really need someone to tell me it would be unsafe to drive, but I love getting third party validation of my own assessments of my abilities.
While there is an element of fun in each of these sessions and it is interesting to observe how my brain approaches each one, is is also thoroughly exhausting and there is generally nothing else that my brain is able to handle for the remainder of the day. While I continue to have others question my disability, these sessions are a good validation and reality check for me. There are reasons I won’t go anywhere near a cash register in any of my volunteering positions! I look forward to learning strategies that will make some of these simple things easier for me. Cooking strategies are on our list!
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.
In a previous post, I wrote about the STP (Stop Think Plan) tool I was introduced to that gets me to actively think through something that isn’t working. I have personalized this tool to WWWB (Dub-Dub-Dub-B), a play on WWJD and also what I feel to be a more lighthearted and positive version of this tool. I almost feel that it could be “Hmm…WWWB” actually, but I suppose that depends on the particular context. (I am picturing myself in a rare moment of extreme frustration and saying WTFWWB?!?😉) My brain doesn’t like anything jarring, which is why the stop sign didn’t work, so this is more subtle and can be seamlessly integrated into my thought processes with either an external or internal trigger. It also slyly bypasses the thought of “I can’t” and goes right to a more constructive problem solving path. I’m sure many self-help books have some version of this already and it’s nothing new; however, my using this tool to analyze how the tool works for me and renaming it has both helped me to plant the seed deeper into my brain for future use and also is an real world example of using WWWB successfully. My neuropsychologist will be proud to hear her tool is working! I’ve also been feeding her usability nuggets and we had a brief discussion on Speaking the User’s Language. She’ll appreciate this is an example of me making the tool more user-friendly for my brain. 👏👏👏