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 saw my special eye doctor a few months ago and was able to get new glasses recently. My distance prescription stayed the same but my reading prescription was changed a bit. I haven’t been reading for quite a while, so I was hoping the new glasses would change that. I am happy to report some success. The first book I selected was one I happened upon in a community library box while on a walk. It’s called Left Neglected, written by neuroscientist Lisa Genova, who also wrote Still Alice which was turned into a movie a few years back. It starred Julianne Moore as a woman dealing with early Alzheimer’s and/or Dementia. This book is a novel about a woman who has a traumatic brain injury that leaves her with the condition Left Neglect in which the brain forgets that “left” exists at all. There simply IS NO LEFT to that person. While I am missing my vision on the left side in both eyes, I am very aware of my predicament and have no problem paying attention to my left hand or foot. I am almost halfway through the book; the woman is in rehab trying to teach her brain that left does indeed exist. The author spent hours with patients and neurologists and therapists to understand how someone with this condition would experience the world and I think she’s done a great job of capturing so many things that I can relate to. I also think that she has written a main character who is very much like me in terms of sense of humor. I find myself laughing a lot because of things that I would totally think or say coming out of her character. For instance, at one point her she gets annoyed with the advice someone is giving her and she asks the person to go stand by the window, which is on the left where the person will essentially disappear. 🙂 At another point, the therapist comes into the room and asks the main character to tell her what time is it by looking at the clock. This is the exchange:
-Can you tell me what time it is?
-And how do you know that?
-Because you just told me I’m your eleven o’clock
Yup. This is exactly something I would say and do. In fact, I believe right after surgery, my doctor told me to look at his nose and my reply was, “I can’t, you’re wearing a mask”.
I have often thought of writing more than this blog, but I know my brain has limitations. I did go back and read some of my old stuff and I definitely make myself laugh with things I had totally forgotten I had written. Perhaps one day. In the mean time I am thoroughly enjoying Left Neglected and highly recommend it if you want to try to understand what it’s like inside a damaged brain in narrative rather than science speak. Now I’ve got Beyonce in my head…to the left, to the left…
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. 👏👏👏
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.