This morning I watched the sun rise for the first time in 18 months. I used to do it every morning right after my brain surgery when the steroids were keeping me awake. I would listen to music and just watch. This morning I had some black coffee and listened to Explosions in the Sky while I watched the sky turn from dark blue to salmon to pink and then an orange-ish yellow. It gave me time to reflect on how much has happened and what is different now.
It’s hard to explain to people what it’s like to have a brain after it has been injured in some way. This article is the closest I’ve seen anyone get to an explanation:
My thoughts this morning have been on not just the after-effects like in the article, but what I think is different about me now. Here are some of the things I came up with:
-My taste in colors is different. I’m drawn to higher contrasts and brighter colors because they are easier for me to see. Subtlety does nothing for me anymore.
-My taste in music has changed. I prefer more relaxing music than the hardcore and cacophonous music of my youth.
-I shop for clothing and other things by sight and touch equally. Once I find something I like, I HAVE to touch it and see how pleasing it feels. This is extremely important to me now. No online shopping for clothing for me.
-I walk into things a lot, even in a familiar space where I know the layout. This is mostly from the missing vision, but probably also just the slower cognitive processing.
-I still refer to my brain in the third person, as if it were a separate entity completely. After surgery my brain was a definite “he” for some reason. Now it seems to be an “it”.
-My plantar fasciitis disappeared immediately after surgery and has not returned. I chalk it up to relaxed nerves. The one major bonus to my brain surgery!
These are self-reflections; it is likely that others who know me would have their own thoughts on what is different in today’s interactions vs. pre-surgery interactions.
I find it amusing how often people feel the need to express their judgment of a situation by making a statement about how they would handle a situation if they were in it. I was reminded of this again from Joe Biden’s recent comment about how he would have handled Trump. I suppose in a way the “If it were me” perspective is the opposite of empathy. Instead of trying to put yourself in someone else’s shoes to try to understand where they are coming from and how that has impacted their behavior, the speaker is placing judgment on the person in the situation and putting themself hypothetically in the situation, yet making the whole thing more appropriate or acceptable?
To borrow the March for our Lives slogan, I call B.S. on this. Until you have actually lived in a situation that is stressful or emotional or incomprehensible, you really cannot say you know what you would do in that situation. You know your own personality, sure, but we all find ourselves in situations that we never expected to be in and we are forced to interpret, respond, adapt, etc. as a situation unfolds. Think domestic violence, sexual harassment, being diagnosed with an illness, having a sick child, being involved in a tragedy, etc. etc. Yet this behavior of saying “if it were me…” is so commonplace. I know, I used to do it just as much as the next person. Until one day I simply stopped. I don’t assume I know all the factors involved in someone else’s choices; therefore I don’t assume I know better. Also, who am I to judge?
I advocate for the following: Try putting yourself in someone else’s shoes with empathy rather than putting your hypothetical shoes in someone else’s situation with judgment.
I decided that taking piano lessons would be a good idea for multiple reasons, including evaluating my stamina, building those connections in my brain, learning a skill, etc. I had a lovely woman named Emily come to my apartment for 30 minutes earlier this week. I have played a little bit here and there in the last year and I guess the same is true for the last 30 years. I took lessons as a kid but never really followed through. Anyway, I learned some interesting music theory stuff that comes with taking lessons as an adult, but I also learned that taking piano lessons for me is very difficult because of my eyes. I couldn’t really follow her finger when she was pointing to a particular spot on the music sheet, nor could I actually see what she was doing when she was demonstrating things to me. Even though her hand was right in front of me pushing down on the keys, my eyes just couldn’t really see it because of the minimal contrast between her fingers and the piano keys, the movement of pushing a piano key is minimal, and I simply cannot process all five fingers at once.
The good news is that I now know my baseline and have somewhere to start from. It is just much more challenging for me than the average person to learn via demonstration at this task. Though, amusingly, Emily told me that for children the hardest part is NOT looking at their hands but focusing on the music. Well, I literally cannot see my hands and the keys in a useful way, so I don’t have to worry about that!
Lesson number 2 next week!
I recently had a conversation with a good friend of mine about her 4 year old son and how he hasn’t learned yet to prioritize visual stimuli so he easily misses things or is overwhelmed. The filters aren’t yet automated for him. It was funny because I didn’t have to explain to her what I’m experiencing from my visual deficit because she gets it…I see the world like a 4 year old, except I KNOW that I see the world like a 4 year old. (Does this warrant a shout out to my brain tumor?!?) Instead of not learning it yet, I am very aware that I have lost my filtering mechanisms. I am conscious of missing things. I don’t trust my vision because of this. I am that person who will only cross a street at the crosswalk and when the light tells me to or while holding onto the arm or shoulder of the person I’m walking with because otherwise I am literally afraid I will get hit by a car that I did not see. This is obviously just safer anyway and how crosswalks are designed to be used in the first place, so in the end I guess my wonky eyes have forced me to be a more law abiding citizen and a better role model for all those actual 4 year old kids crossing the street with their parents. Yay me!
Remember that show? When someone had to run around looking for all the expensive stuff and the hidden prizes? They always threw in the maximum number of whole turkeys. I would be terrible at that show now. I may never have been good at it, but I would be particularly terrible now.
I found myself in the supermarket yesterday and I was reminded how useless I am in the supermarket right now. I get visually overwhelmed very quickly. This makes it difficult to browse or to actually find anything. Because I am overwhelmed, it is also difficult for me to actually think about what I might want. A list is helpful to get the essentials, but even that doesn’t solve the problem of the experience I now endure.
Mom went off to get something and left me to shop for whatever I wanted. I looked down the aisles and selected the snack aisle because everyone always needs snacks. I decided I would get Triscuits. When I found the section, I could only see family size boxes and flavored boxes, no regular, original Triscuits. After what was probably 30-60 seconds but what felt like 10 minutes, I finally found what I was looking for. But it was frustrating and I was on the verge of tears in the freaking supermarket in the stupid snack aisle. This is my life now.
I like to focus on the positive and I tend to write more about that. I have no interest in writing things to have people read them and feel pity or feel sorry for me. I’m dealing with this new reality and sometimes it does suck. Most of the time I look at it as an adventure. I look forward, though, to those days where going to the supermarket is not given a second thought at all and is just another errand that needs to be run. The things we take for granted…
It’s been a really long time since I’ve written anything here. I’m about halfway through my chemo and things are pretty normal, as normal can be. I’m trying to be more productive, by my “new normal” standards. Reading is difficult for me because of my visual impairments; however, I try to push myself when I can. I am reading a book called In Shock by Rana Awdish, a doctor who became a patient and experienced many interesting things along that journey. Many I relate to. One in particular is related to my last post from so long ago and it has to do with communication. There’s something called the Ring Theory. Picture concentric circles with the person in need of support in the center, immediate family and close friends in the next circle, and more circles that eventually lead to acquaintances in the far circle. Based on these circles, the etiquette for venting or complaining about a situation is as follows: comfort in and dump out. Say things that are comforting when speaking to someone in a smaller, closer circle and leave the venting for someone in a farther, outer circle. I love this concept and it works in any situation where someone needs support. A nurse or a neighbor shouldn’t be telling a close family member how awful the situation was for THEM. As someone who sits in the center of my own circles, I have come to be aware of how some people make every situation all about themselves and are thus violating the basic principle of this ring theory. I think it’s a great way to ask yourself whether you’re helping the situation or interjecting your own needs into the situation. We could all learn from this kind of awareness.
In recent conversations, I’ve heard people describe feeling insulted or annoyed or even angry by comments made by other people. Comments include things like “You look great” or “You don’t even look sick” or “Don’t worry. Everything will be OK” or “I know someone who had that and lived a long, healthy life”. We all know that people are trying to be helpful with these comments. Sometimes people are projecting their own hopes and fears. I honestly believe that there is no right thing to say to someone and so that can make everything seem like the wrong thing. It is clear that people have the best of intentions. I give everyone the benefit of the doubt and do not read into any comments, but that may be difficult for others. Food for thought for all of us, even for those of us who have an illness and are talking to someone else with an illness. We don’t necessarily know someone’s diagnosis or prognosis or mental or physical state and we should be aware that we probably know a lot less than we think we do about what that person is experiencing.