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.
In my first neuropsychology therapy session on handling neuro-fatigue, I learned a tool to Stop-Think-Plan and as my therapist was explaining it to me, my brain was totally fixated on STP being Stone Temple Pilots. I was a 90s kid, that is what STP means to me…unless I see it on a vanity license plate I suppose, then I would think STOP.
The concept makes perfect sense. In order to be proactive about my neuro-fatigue, more conscious self-monitoring can help me figure out when I’m doing things inefficiently and I can learn to auto-correct. My problem is that my human factors brain wants things to be simple and user-friendly from the get go and if I don’t perceive them to be, I go into redesign mode immediately and have a hard time paying attention to the content of the discussion. I have the feeling that I might be an unintentional pain in the ass patient as we move forward. First, it drove me a little crazy that the STP handout was in almost all italics so they weren’t used for emphasis. Second, I found the stop sign concept to be too jarring for my brain for a mental tool that I want to become an automatic helpful tool. I’ve been thinking of another picture that could be the visual representation of this tool. Perhaps the STP sticker or maybe I’ll just put pictures of Scott Weiland around my apartment as my reminder. It’s not like he’s hard to look at anyway. From now on when I see a picture of Scott Weiland, it will be my mental trigger to take a break and ask myself:
-What am I doing?
-What was my original goal?
-Could something else work better?
I just realized I can have auditory representations of the tool as well. I will add some STP songs to my playlists so that they can also be mental triggers. Dual coding my STP triggers into multiple sensory systems. Go brain!
For the last five years, I have been actively observing how my brain is working, especially when it makes errors. This is a special skill I acquired after my brain surgery left me with my sensory and information processing deficits. I’ve been thinking about how most people don’t have this ability because their brains work and everything “just happens” naturally. I have written about this multiple times over the years. We’ve learned so much about the brain from people like Phineas Gage whose brain injuries allowed for others to study how things work. I get to do this every day on myself. There is no word in the dictionary for watching your own brain work. The closest concept I can think of is mindfulness, which focuses on observing your thoughts and feelings without judgment. I actually observe not just WHAT my brain is doing, but HOW. I have come up with the term COGNATE to describe what I am doing. I observe. I assess. I often laugh. I find validations of concepts I learned in my cognitive psychology courses and books.
I recently started therapy at a brain injury facility and am learning tips and tricks for being even more aware of what my brain is doing and then actively training it to do things I want it to be doing. I have learned about the concept of neuro-fatigue, which is intellectually new to me but very familiar to me in real life. This is SO MUCH FUN for me. It very much falls in line with my natural cognating.
In a previous post I was questioning whether I identified as a human factors engineer anymore since I was no longer practicing. I would like to say that it became very clear to me immediately that my human factors brain is still there and that is very much who I am. I naturally and automatically assessed the usability of each handout I was given in my welcome packet and during my sessions as well as all the signage and displays that are intended for the user groups of brain damaged people and their caregivers. It seems likely that my application of human factors knowledge will become an integral part of my therapy moving forward and that I may be able to help them as much as they are helping me. Coincidentally, I have always had an interest in designing for special populations and even wrote my graduate school essays on that topic. Then I went in a different direction once in graduate school. Perhaps some things were really meant to be after all…
I suspect I’ll be writing a bit more frequently in the coming months as I continue on this journey.