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.