I’ve been living in “survivorship” for a while now. It’s that period when you’re done with treatment and you “go back to normal life”…except you don’t. I have found survivorship to be more difficult than going through radiation and chemo. I’ve spent the last almost 3 years living my best life with my current abilities, which aren’t what they used to be. I constantly question whether I’m doing enough, what I could be doing differently, etc. I recently moved back to my home state to be closer to family and friends, to both have a support system and provide a support system. I’m in the process of deciding what artwork I want up on the walls of my new apartment, what I want to be seeing on a regular basis. I have found that generally I am leaning toward artwork that is more representative of me longer term rather than things I’ve accumulated in the last 5 years after my diagnosis. Perhaps this goes with moving home and getting in touch with my roots. Star Wars posters are up. Australian aboriginal paintings are up. Old fire hydrant advertisements are hung. New Jersey pieces are given their places.
The one thing I haven’t decided on is my diploma that showcases my PhD. It’s been in a pile of stuff that I haven’t quite figured out yet. I hadn’t really given it much thought, but some topics came up in tonight’s support group that brought this subject to my forefront. First there was a discussion of grief and grieving for things lost, including our former selves. Then there was the topic of contemplating who you are when you’re not doing what you used to do and may never be able to do that again. These both directly related to my diploma dilemma.
I worked very hard for 10 years to get that degree. It was the biggest accomplishment of my life. And now it’s a piece of paper, in a big fancy frame, that reminds me of my current limitations, of my disabilities, of a former life. Sure I’m immensely proud of it, but it’s not me anymore. I can’t practice in my field anymore. My brain has knowledge that it can mildly apply to life around me. And now I’m asking myself, have I grieved the loss of my former professional career? I would absolutely prefer to still be working and have a normal functioning brain and not gotten a brain tumor. I loved my profession. But it’s not mine anymore. Now I’m defined by my volunteering, by my participation in support groups, my focus on improving the daily lives of those important to me in ways that I am capable of. Yes these are fulfilling goals, given my situation. I just need to decide whether I want to (a) display my diploma at at all, (b) display it prominently, or (c) display it in a corner where I can see it when I want to. What a weird dilemma that I never would have thought I’d have…first world problems…
One good thing that has come from COVID is that I am actually reading more. I don’t know that it really has anything to do with COVID, perhaps it’s just cyclical for me with my visual processing issues. Recently I had two reading errors that I thought I would write about. I’ve written in the past about how my reading errors tend to be based on seeing the end of the word and then my brain calling upon the most available word that ends that way. People with normal vision generally process words by focusing more on the beginning of the word and the overall word shape. Since I am often missing both of those pieces of information with my left side deficits, this leads to some very confusing and entertaining headlines and sentences. A few days ago, while scrolling through news headlines, I read “Rabid baboon sightings in Arlington” and I immediately pictured a scene out of a movie where zoo animals are roaming the streets. I reread the headline and it turned out to be a rabid RACCOON, which clearly makes much more sense. I am fascinated by my brain going to baboon before raccoon. I really cannot recall the last time I thought of a baboon, and even now as I try to picture one, I’m somewhere between an orangutan and a chimpanzee. I should probably just Google baboon…yikes, I would be seriously concerned if one of those was roaming the streets of Arlington!
The second error that got me was a sign that said something about Deaf Chickens. I don’t remember exactly what the sign was for and clearly it wasn’t really about deaf chickens. It said something about Deaf Children. Looks like my brain was a little bit better at seeing the shape of the word, but again, what does it say about me that my brain went to chicken before children? I really don’t know. The deaf chicken sign, though, actually got me thinking about deaf chickens. I’m sure they exist. Have I ever in my life thought about the possibility of chickens being deaf or disabled in some way? In fact, most of my thoughts about the disabled are related to people. But, why wouldn’t there be just as many, if not more disabled animals out there in the world? Blind animals. Deaf animals. Sure, we’ve heard of pets who are. But wild animals. They probably don’t last all that long, sadly. That’s probably why we don’t have frequent thoughts about them! That got me wondering what life would be like for a blind bird. Probably not too easy. Or a deaf bat. Can one feel echoes? My brain is going in all kinds of terrible comedic directions now. Duck with one leg? Does it just go in circles? Now that I think about it, I suppose animals can get brain tumors too. They just don’t get radiation and chemo, unless they are house pets with owners who have the means to make that happen. Suppose this is something that zoo people have to tend to on occasion. The brain, especially a wacky one, can wander to so many interesting places…at least for today, in this weird time of COVID, rabid baboons and deaf chickens brought me some entertainment.
A while back I wrote a post about my cognitive testing: https://yourhandinmind.com/2019/02/01/visuals-from-my-cognitive-testing/
It includes pictures from a particular test I took called the The Rey-Osterrieth Complex Figure test, in which I had to copy a figure, then draw it from memory twice. I don’t particularly remember the conversation with my neuro-psychologist about my performance on that test, but I did look it up afterwards and saw lots of pictures of other peoples’ drawings. As I said in the previous post, I noticed how lots of other pictures seemed to start with the outline of the whole figure, whereas mine started on the right with details and then slowly moved left. I did not, though, read further into how to interpret the results. Fast forward to this morning. I’m currently listening to Malcolm Gladwell’s latest book, Talking to Strangers. It’s quite fascinating and I highly recommend it. Layperson psychology is great. Anyway, I’m listening to this chapter about interrogation techniques and studies conducted in a simulated POW camp. My ears perk up when he talks about how well-trained soldiers reacted as if they were in the real world conditions, even though they rationally knew they were in a simulation. As part of the testing, they were given the same test that I was given! What they found, as evidence of the PTSD they were experiencing, was that the participants created figures similar to mine, rather than what “normal” adults generally did. Those soldiers created figures that focused on specific parts of the figure, rather than the overall shape, just like I did! What he states next, which is something I was not aware of, is that this is more indicative of a less-formed brain, a prepubescent brain. So the soldiers experiencing PTSD had stunted cognitive processing as evidenced in the test which was similar to the stunted cognitive processing that I exhibited after my treatment. Totally interesting! I don’t have any expertise whatsoever in PTSD and cognitive processing, but it’s not totally surprising to make these connections. I have also written previous posts about how my processing seems to be more like that of a child or someone on the spectrum, though I did not realize that my results were actually evidence of this. https://yourhandinmind.com/2018/02/21/im-40-but-see-the-world-as-a-4-year-old/
I don’t have any particularly fascinating insights into this. Just did not expect to find my own connection and learn something about myself in a New York Times’ Best Seller!
In a recent trip to the grocery store, Mom and I picked up a boxed meal similar to HelloFresh and the like. We thought it would be a good idea to see if this would be an option for me when I’m solo. Let’s just say it was a bit of a disaster.
First, Mom suggested that I try it on my own to really see how it goes. We pulled out the card, which has very small print and A LOT of instructions. I just froze. The gears in my brain came to a grinding halt. I just looked at the card and nothing happened. After a minute or so, Mom ran interference. She gave me two possible tasks to do while she started other things. Two tasks. Cut the brussels sprouts or zest and juice the lemon and lime. (Side note: I just learned from writing this blog that there is an s at the end of brussel in brussels sprouts!) Again, I froze. My brain couldn’t decide even between these two things. Which would be easier? Which did I want to do? No successful data processing. Finally I settled on zesting and juicing, which consisted of me repeatedly asking questions about exactly what I was supposed to be doing. It became crystal clear that, were I to be doing this on my own, it would easily take me over an hour and be quite stressful to do. Lesson learned – pre-fab meals are not my jam. Thanks to Mom, we had a tasty meal after all.
I often still have moments where I feel guilt for not working, where I think I should be doing more. And then I am brought back to reality when I cannot follow the steps in a recipe. Such is life. Luckily I have learned lots of things that DO work for me; it just requires me sifting through these things that don’t!