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…
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.
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!