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. 😉
Two and a half weeks ago I graduated from my cognitive rehab after 3 months of weekly appointments. My perception was that I’d been going for half that amount of time until I just looked at my calendar. I’ve been verbally saying 6 weeks, but it was 12. Go brain! Graduation seems like a positive thing, right? You have completed something and are now ready for the next stage in life. My graduation evoked mixed emotions. On the positive side, I learned some cool brain tricks and tips that I continue to use as I navigate the world around me. I did enjoy my time in therapy as a insider researcher or participant observer. I also really enjoyed the feeling of being challenged by my doctor, as it brought me back to the feeling of academic discussions in graduate school, a feeling that I really miss. I got more external validation that I do have a legitimate disability and that I had really be doing my own form of therapy on myself for the past few years, reading books on cognition and coming up with strategies on my own. There was even some relief that I hadn’t been missing out on some really important thing that I could have been doing all this time to make my life better.
On the flip side, my expectation going into therapy had been set for possible “significant improvements” with possibilities like returning to work some day or even driving again was a false one. I don’t blame anyone for that. I believe the doctor who told me that believed it themself, based on the 4 hours spent with me. I’m sharp and very aware and it seems like I can do much more than I can if you give me a task to focus on, in a controlled environment, with no distractions. But that’s not the real world. And so the graduation also solidified for me that my life isn’t going to change too much. I’m OK with this; it just required a little brain reset. I continue to try to push myself when I can and don’t judge myself when things don’t go according to plan. I have found things that make me feel like a productive member of society, and I’m finding that my overachiever personality is starting to peek out from the depths. My brain definitely wants to do so much more than it is able to and I’m interested to see where this takes me. Certainly making the right connections can lead to something that I didn’t even know was available. This time I don’t have expectations, just an openness and curiosity for what is to come.
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. 👏👏👏
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.