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.
I’ve been asked a couple times what it really is like looking through my eyes now, with such a large blind spot on the left side. As a reminder, I have almost no bottom left view at all, very little top left periphery and am even missing some of my central left side as well. There is a picture of my visual field test results in a previous blog post. I figured I would try to explain it as best I can.
First, when I am looking straight, I see an entire visual field just like most people. In fact, if I am stationary and looking at things that don’t have writing on them, I generally don’t even notice that my eyes are any different. Where I have the blind spot, it is not a field of black or a field of white emptiness. I don’t know what I am not seeing until it comes into my active field of view because I have turned my head. It is exactly the same concept as the blind spots you have when driving vehicles. I just simply don’t see whatever is in that area of my visual field OR my brain is filling in what it expects to be there.
I do still have some kaleidoscopic vision, in which my left eye has sort of flashes of light. I believe this is because I do have some bits of the periphery getting through and the periphery is most sensitive to motion, so if something moves through the field, it causes me to see some light and dark grays that appear to flash for a second or two. So I do “see” some things to the left under the right circumstances.
Finally, the brain surgery, radiation and chemo also have slowed down my visual and cognitive processing so I don’t take in all of the stimuli in the visual field even when it is in my field of view that is working. This is why it is easy for me to get overwhelmed…I simply cannot process a lot of visual information quickly anymore. In fact, I have wondered whether this is in any way similar to disorders that impact one’s ability to perceive and interpret their surroundings. One major difference of course would be that I’m aware of all of this.
It would be great if I could take a picture of what I see and show it. Alas.
I’m back. About to start my third round of chemo and turn 40. Woohoo.
Yesterday was somewhat of a bummer day unexpectedly. My chemo was pushed back a week after I accidentally took too much and so Mom and I took advantage of a week of me feeling good. We spend a couple days in NYC. Chihuly at the Botanical Gardens then the Guggenheim. Unfortunately, I couldn’t handle the Guggenheim. It was too overwhelming for me. I couldn’t look at the artwork to the right and walk around to the left because I can’t see to the left. It was a little easier once we went all the way to the top and came down because I could just hold onto the railing with my right hand and look to the left, but it really reminded me of the visual deficit and I was bummed that I couldn’t enjoy the museum. I think it was the first time I really got upset about some ability that I’ve lost. Bummer for sure.
I also learned that sitting in a car driving around the city was extremely difficult for me. I got really anxious. There was just so much going on all around me and I can’t process it all and it was not fun for me at all. Also a bummer. It is just way too easy for me to get overwhelmed by things that are very busy and that are unusual or out of the ordinary for me. I suspect a combination of the eyes and the slowed cognitive processing.
My eyes do continue to amuse me though. The other day I thought that people were saying Einstein was exposed as a sexual predator. My thought was, Really?!? Then I realized I didn’t see the W because it was all the way to the left and in my blind spot. Einstein is still good as far as I know.
My time off from treatment has been relaxing. I like feeling the drugs leaving my system and my brain starting to slowly return to its old self. I definitely mean SLOWLY, but I still like knowing it is happening bit by bit. I remember talking about coming out the other end of this with superpowers. As I read all about the brain and neuroplasticity and all the things I can do myself to improve my brain functioning, the idea is not really so far fetched at all. I just need to keep my brain active and force it to continue building new connections. The research suggests that being exposed to novel stimuli is a great way to keep the brain on its toes, so to speak. Exercise, especially aerobic exercise, also appears to be a wonder drug for the brain. Now I need to figure out how I can exercise my visual processing system to either more efficiently handle incoming stimuli and/or to start compensating for my left side blindness. I welcome thoughts or suggestions. I am also curious about the impact of glasses in a couple weeks. Fashion and function! And maybe X-Ray vision?!?