The other day I realized that I had successfully made something that should be annoying fun instead. Nobody likes getting spam phone calls. I am one of those people who doesn’t answer the phone when I don’t know who is calling. If it is important, they’ll leave a message and I can call back or they will text me. A few months back, I changed my ringtone to a song that instantly puts a smile on my face and makes me feel good when I hear it. Now, every time my phone rings, it makes me smile no matter who is calling. And when it is a number I don’t recognize, I just let it “ring” so I can listen to the song for longer. Thus, spam phone calls are no longer annoying because they actually bring me a little joy each time. I want to find ways to create this same experience with other annoyances in life. I don’t have any other ideas, but I am sure some will present themselves. Feel free to steal this idea for your ring tone…it totally works if you find that right song!
I have tried explaining my visual deficit in multiple blogs; however, this morning I had a realization that I’m not aware of all the ways I experience vision. I woke up this morning and looked at the clock across the room. The first number was an 8. Wait, maybe that’s a 7. Wait, maybe that’s a 9. As I laid in bed looking at the clock, I watched that number change before my eyes between those three numbers. Sometimes 8. Sometimes 7. Sometimes 9. After a few minutes of this, my brain realized it was the perfect moment to learn a lesson. I’ve generally described the blind spot from the perspective of driving and not seeing a car in one glance and then seeing the car in the next glance. Makes perfect sense. I’ve also talked about missing the first letter of a word or the first word of a sign because it’s on the left side. What I realized this morning is that letters and numbers are very difficult for me because, depending on the focal point for me, and the subsequent location in relation to my blind spot, they actually change on me. Who knew! I could clearly see the top line and the right side line, which exists in all 3 numbers, but the left side line and the bottom line were coming and going. Now it makes sense why I have such difficulty reading out a string of numbers without using my finger as a guide. It also makes sense why I have to double and triple check money amounts and credit card numbers and things of that nature. (Also my human factors brain comes out for a second to comment on the importance of the font type for readability.) A new awareness for me. Starting the day off right!
As a final note. Some of you may remember my experience with an analog clock in the hospital. The analog clock helped ground me in reality because I knew what it was supposed to look like and if it looked off I knew it was my sensory perception that was jacked. Since then I have felt most comfortable with an analog clock available somewhere in the room. Now it appears that digital clocks can be my friend too! It just took some time to figure that out (pun intended…I hear your groans).
I’ve had time to look at the materials from my cognitive testing a little bit more and these pictures are my favorite thing. They are from a test called the Rey–Osterrieth complex figure test (ROCF) which is often used in assessing people with neurological issues. First I was asked to copy a complex geometric picture and after a certain period of time I was given a new colored marker. This allows us to see the order in which I drew the figure. This is the top picture. Second, the original graphic was taken away and I was asked to draw it again from memory. That is the middle picture. Finally, after some period of delay, I was asked to draw it again from memory. The pictures were then scored based on how many of the original components I was able to reproduce.
I have since Googled this test and have seen many other examples of other people’s drawings and I just find it so interesting. I can see into how my brain works a little bit. For instance, because of my visual deficit on the left, all of my drawings start on the right and work their way to the left. Each drawing gets less detailed, obviously, but more so on the left where I simply have no idea. Also, I take much longer as you move down, demonstrated by the fewer colors in the markers. One of the things I’ve noticed and this confirms is that I have trouble with big picture processing. Whereas in other people’s examples, there are full drawings that start with the overall shape, mine all focused on the details on the right side first. Obviously this is a hard task even for someone with no brain trauma. Nobody would do this perfectly. It’s the insight into how my brain now does thing, how visual information is processed and organized, that I am excited to have some actual data about.
I like these so much I hung them up in my living room so I can enjoy them all the time. 🙂
I recently learned the name for my visual deficit – left homonymous hemianopsia. I have always had difficulty describing what I’m experiencing. Now I can share some visual examples. Remember that none of the black or grey areas are visible…it’s just the smaller field of visibility that I see. The first photo is a good representation of the field cut. The second series shows the out of focus left half that the brain is trying to fill in. That’s what happens to the left side of people’s faces for me!
Finally the link is a video of someone walking around with this condition, though on the right instead of the left. You can see how disconcerting it can be to be aware of missing so much.
I do have some upper left vision but none of my lower left vision currently. So my field is somewhat better than in these examples.
I have been thinking about one thing I would have done differently if I knew then what I know now. I wish I would have looked at a support group as an additional information source. I didn’t start going to one until 6 months into my treatment. I could have learned so much about what I was about to go through by just listening to other people’s experiences much earlier. I could have heard questions and topics I wasn’t even familiar with. I might have been prepared for insurance denying me treatment. I might have better understood the effects of steroids. I only looked at a support group from the emotional support aspect and I didn’t feel I needed that. My perspective shifted when new people came into our Cancer Support group early on and I felt like I had useful information to pass along. So my suggestion is to find a support group right away…for survivors, for caregivers, for anyone related to your situation. You don’t even have to talk. You will absolutely learn things that can help you navigate what is to come.
I recently had a cognitive evaluation to understand how my brain is actually doing after surgery, radiation, and chemotherapy. The results were in line with what I’ve been experiencing, so it’s nice to have validation. Now I can focus on doing things that will target my impaired areas. I’ve actually been pretty spot on with my previous suggestions of playing piano, learning braille, and my paint by sticker books (in terms of them being good exercises for my brain). I will be adding each of these to my daily activities to the extent I can. I also have known that I need to challenge my brain with new things – and my neuropsychologist also suggested some things that I clearly will not be good at, such as playing catch or tennis. I’m going to take this guidance as a challenge to have adventures, to actively try things that I wouldn’t have because I’m scared or am convinced I won’t enjoy or I’ll be terrible at. As long as it is something safe (Dodge Ball is probably out), then why not? When my gut reaction is no, I’ll stop and rethink. (It’ll be like Jim Carrey in “Yes Man” when he just says yes to everything). I need to work on hand-eye coordination, so maybe I’ll add juggling into my activities! That will be hilarious. A dance class? Also would be hilarious. There will probably be many frustrations along the way, but there’s no reason not to add a little adventure to my recovery! Suggestions are welcome!
Am I disabled enough to be eligible for things for the disabled? I know I don’t have to “look” disabled to BE disabled, but even I struggle with this concept. I felt the need to look up the definition, which is: a physical or mental condition that limits a person’s movements, senses, or activities. I absolutely fall under that definition. I don’t know if that will appease my struggle, but it’s good information to have.
This past weekend, activities reminded me that I AM disabled. I took myself to a concert in a large arena this weekend. I had a seat in the nosebleed section and as soon as I started up the steps toward my seat, I because anxious and uncomfortable. Once I sat in my seat and looked around, it only took about 15 minutes before I had a headache, felt dizzy, and my eyes were incredibly strained. The perspective from up there was so visually jarring, things seemed very odd sizes, the section was very steep and disconcerting. When I couldn’t take it any longer, I headed downstairs to speak with someone in guest services. Eventually, after much back and forth I was able to get a seat in the accessible area right off the concourse that is available for people in wheelchairs or who are semi-ambulatory. I’ve now learned that I need semi-ambulatory seats for anything in that kind of venue. They cost more but at least I don’t feel like Alice falling into the Looking Glass there. And I learned that in order for me to get tickets for events like that in the future, I have to call a special number at Ticketmaster; they are not available through the website. As frustrating as all of this was, at least now I have the information and it won’t happen again. It’s just one new experience that doesn’t turn out the way I had anticipated. Guess I’ll have to attempt to get used to that uncertainty.