Guard and Visual Memory

So it turns out that I have no visual memory. Imagine getting to the end of a paragraph of text, and you have no idea what the beginning of the paragraph said. 

School was full of that kind of thing for me. I would read and re-read and re-read, sometimes for 20 minutes - the same paragraph and still have no clue what I had read. It was so frustrating. 

I had been a ballerina from about 2nd or 3rd grade through my junior year in high school. I loved it! 

My sophomore year in high school, I went to try outs for A Midsummer Night’s Dream. I wanted to be one of the dancing fairies. I figured I had enough dance experience and I could do it. 

They showed us some choreography out in the hall. And I just KNEW I wouldn’t be able to learn it so quickly. They gave us about 20 minutes or so to work it out with each other. I didn’t know where to turn or how to get help. 

When we got on stage, I missed a turn or did the wrong thing. Then I blanked out. Then I ran backstage and just started crying. I was hysterical, frankly. I was so discouraged. 

Some really great gals came and told me to try again. They were so re-assuring. I knew I had messed up. And I knew I couldn’t do better. I knew other gals on that stage deserved to be able to be those fairies and I would flub it up. 

I didn’t go back out. I ended up doing makeup for the production. When the next production came out - “Little Shop of Horrors,” I played keyboard for it. (I’m a musician too.)

So, now I am a mom of two teen boys. My older boy has been a competitive dancer in his past. He is amazing. He learns choreography the first time he sees it. He always has. He amazes me. It must be so wonderful to see and understand something the first time you see it. 

He hasn’t done competitive dance for a while now. But he is a senior in high school and has discovered guard. 

Tonight, I went to a rehearsal for their upcoming competitions. I got to take photos of the kids. 

My son has told me that when the coach shows them new choreography, the coach tells the students to practice, and the coach walks away. The students turn to my son and he teaches it to them. 

He has visual memory. That’s amazing. I am so glad my son doesn’t have to deal with my disabilities that frustrate and drain my energy all day, every day. I am so tired of fighting to do things, and others do them so easily. And it’s because my eyes just don’t take in what others can see so easily. 

Please don’t ever take your own eyesight for granted. It’s a valuable tool. Worthy of being appreciated. 

I hope you get to see many beautiful things today, and maybe these photos of my son will be one of those things.

 

Dissociation

One of the things my vision therapist is working on me with very intensely is “dissociation.” It’s an official diagnosis. One of the things they have pointed out to me with this is that I am not aware of my feet or my body when I am walking. 

My gravity reader in my body is dialed way too low. They want me to get ankle weights and wear them everywhere to make my gravity reader go up. So I will dissociate less.  

[This is a photo of me walking the board, wearing my dress that has blue roses on it. I have my right leg raised, and I am tapping my knee with my left hand. I am also wearing black ankle weights in this photo.]

I continue to be surprised and (grateful?) that this is an actual, diagnosable thing. And that they are working on it with me.  I am literally learning how to walk again. 

Today they had me swinging my arms widely while looking straight forward. They also have me walking on either side of a plank and tapping my raised knee with each step, with my opposite hand. It is cross-body exercises. We are re-wiring my brain to have cross-connections that I apparently never made in early childhood. 

Per their instructions, I bought a walking rail for my dining room. I painted it a happy turquoise. 

I walk it a lot. My feet follow the edges of it so I am learning to walk properly.

I will he saying quite a bit more about this in future blog posts.

What is tunneling?

I had a guest vision therapist today at Dr. Magic's office. He taught me many things today. I will share them one blog post at a time. He told me that our bodies can only heal when they are in a safe space, a safe environment. If we are full of tension or are being subjected to unsafe conditions, we cannot heal. 

When I go to vision therapy, I love how supportive these folks are. They tell me to breathe. They constantly pay attention to my breathing. And my stress level. They tell me when to palm (to slow down my (trachea?)) to calm my breathing and help my body know it's in a safe place. Today, my vision therapist had me working with blocks. 

[The photo has disappeared. I will need to photograph it again at some point & replace the photo that was here in the original blog post.]

It was my task to line these up in a certain way, on this cork board. He was checking out my cross-body coordination, manual dexterity and some other things. When he had me stacking on the white blocks, he told me to "go faster." (I was doing a specific task, arranging the blocks.) 

 My breathing got faster and I felt pressured to perform well. He told me that my vision narrowed when I was searching for the correct "next block." This, he said, was tunneling. I was feeling frantic in my body and my vision narrowed as if I was looking through a cardboard tube. 

For the next half of the test, he had me doing the same thing. This time he told me I didn't have to rush at all. He told me to take my time. After I did one or two, he told me to try to take in the whole board instead of just scanning 1 block at a time. I gave myself permission to put the blocks on and straighten them as I did the exercise. 

After it was over, he asked me how it felt. "What was different?" He asked. I had felt more calm. He had kept pointing out for me to breathe (I love when they do that), and had helped me stay calm and focussed as I did the exercise. 

He then pointed out that my arms had been in constant motion pretty much. Whereas before, when I was tunneling and stressed, I kept stopping and starting. When I was calm and breathing and just trying to do a good job, but take my time at it, I was actually much more efficient. My body kept moving. 

The way he described it felt like a Thai Chi exercise - fluid movement from the center of our body. I don't know if that is how Thai Chi is spelled. If someone lets me know, I will fix it. I don't even know if that is the definition of it. But, it's how I understood what he was saying when he was talking about my constant, calm motion, as opposed to my frantic "start and stop" motion. 

As I remember to stay calm and teach my body that it's safe, I will be able to tunnel less, and be able to teach my brain how to sort things better. I will gain larger pictures instead of narrow pictures. And so many things should become a lot more clear and easier to understand. 

Thank you for following along on this journey with me. If you would like to order these blocks on Amazon dot com, this is what they look like. I will post a link when I find them on Amazon. I feel like these blocks would be a wonderful tool for a wide variety of people. They are versatile and can be used to do many kinds of tasks. I bet they would be great in a preschool or Kindergarten situation too.

 

Another Concussion

"

I am a dog walker now. The company I work for has a nice app where you tap "arrive," it tracks your walk via GPS, you can take pix of the dogs you walk and upload them, and then you tap "finish."

I have meant to do a blog post of the concussions I have had over the years. There have been many. I can't remember if I wrote that yet or not. But last week I got another one. It is because of the multiple concussions I have had, that I am now in vision therapy.

Last week, I had just finished walking a dog. I tapped "finish," and I was glancing at a photo of the dog I had just taken, to see if it was cute enough. And I walked straight into this staircase.

The wooden staircase that I walked into last week, head first.

I was stunned for a moment. I was angry at myself. And then I realized I might fall over, so I went and leaned on the wall to the right and just stood there, crying.

I eventually drove myself to a local doc-in-the-box. They asked me a bunch of questions. I don't remember them all, but one was, "do you have double vision?" I said, "I always have double vision." She said, "is it worse?"

I looked at her, examined her face and realized: "yes, it's worse."

She sent me to the Emergency Room. I drove to a place that said, "Emergency Room" on the outside but they didn't have a CT-scan machine, so I had to drive to a 3rd location - a different Emergency Room that had a CT-scan machine.

Of all the concussions I have had, this was the smallest one by far. Having said that, it's a week later as I type this, and my head still hurts.

At the third location they gave me a CT-scan. They determined that my brain looked ok and it wasn't bleeding. So that's very good.

Then they told me:

"Don't drive until all the symptoms are gone."

Yeah. Like I have a choice about that. I will just have my chauffeur drive me places until I feel better. ... That's a joke. Hopefully it's an obvious one. I most definitely do NOT have a chauffeur.

There is so much I want to say about this, but the thoughts in my head are so jumbled. So, I will write more in future blog posts.

"

 

High School Driver’s Education

In high school, a lot of people take a class called “Driver’s Education.” It’s a classroom setting, with a teacher and all your classmates. In the class, students are taught the differences between the lines in the road. We’re taught that a stop light means “stop,” even if you can go right on red - you stop first, then look. If no one else has right of way and the intersection is empty, you can proceed to turn right on red. Did you know New Jersey was the first state to say it was ok to turn right on a red light? My dad thought that was pretty cool, that New Jersey was progressive like that. 

One of the classroom tests we took that was self-directed, was a tool we used to determine our peripheral vision. The person taking the test puts their head in a little U-shape and looks straight ahead. Someone else starts moving little yellow discs - on one or the other side of you. The person taking the test is supposed to say “stop” when they first see these discs moving. 

My friend who was moving the disc got almost to my direct front of vision when I said, “stop.” She was pretty startled that I hadn’t seen it sooner. I was too. I was mad at her for moving it so slowly. 

I think the teacher called us to the front of the class at that point (we had all been taking different tests around the room and were reconvening). He told us we could finish doing the different tests later. Later, I saw what others had written on their papers in regards to the peripheral vision discs, and sort of averaged what a few of my classmates had written and fudged a reasonable number on my own chart. I figured I just couldn’t see the yellow on the disk because the paint had chipped off so it looked like the dull pewter color of the rest of the instrument. 

Well, I am now 47 years old and I went to my vision doctor. He was testing me in so many different ways, to determine what was wrong with my eyes. He used a silver rod with a gold ball at the tip of it. He used this rod for several different tests for me. He had put the rod down for a while and tested me in other ways. A bit later, he picked up a similar rod and held it just outside of my vision. I could see it, but it was clearly a silver ball on the rod, and no longer gold. I thought, “oh ,he has 2 of these rods for different tests.” 

He said, “tell me when this ball turns gold.” I thought, “what? What on earth does that mean? It will change color?” He started moving it from my left to the center of my vision. Suddenly, about 3 inches from the center of my vision, this silver rod with the silver ball on top - suddenly, the ball at the end was brilliantly gold! It shocked me. I had no clue it would suddenly be such a vibrant gold. I probably looked startled. I know I felt completely startled. I consider myself to be a connoisseur of color. And yet, I had completely missed that this bright, vibrant, gold ball was a bright, vibrant gold. I could have sworn it was a silver monotone pole nearly identical to the other pole I had been following with my eyes. I hope I have described this adequately. I feel like I have more words in my head that want to come out, but I can’t figure out what they might be. Hopefully you’ve understood me. Thank you for following this quirky journey the best you can.

The optometrist magician did this same test for me. He took the ball out of my vision to my left, and asked me, “when does it turn gold?” And, once again, I was completely startled when, about 3 inches from the center of my vision, it went from a dull gray / silver color to a vibrant, polished, gold ball. I even wondered if he had polished it a few minutes before, it was so shiny and bright. 

He told me this meant I have tunnel vision. No wonder, all those years ago, doing that test in Driver’s Education class, that I couldn’t see that girl doing the test for me, doing the peripheral vision until it was nearly in front of me. I have tunnel vision. 

I am 47 years old, and I just learned that I have tunnel vision.  

Am I Safe To Drive?

Note: I wrote this blog post before I got my new glasses.

Am I Safe To Drive?

I told someone that I was diagnosed with having tunnel vision. Their immediate reply was: “are you safe to drive?” 

I have been asking myself the same question since the moment Dr. Magic Optometrist told me, “you have tunnel vision.”

I know I have to turn my head and look very carefully when I am driving. I also know I have to leave large following distance compared to so many people. 

I mean, I have been driving for 31 years at this point. Am I safe to drive? Would the Department of Motor Vehicles have said to me: “you’re not safe to drive, you have tunnel vision.” 

I have been compensating for this for as long as I have been driving. Am I safe to drive? I don’t know. 

When I get my new glasses and they let me see in 3D, will they radically change how I drive? Will I be able to drive then? Someone I know is taking me to the appointment when I pick up my glasses, and I think it’s probably a good idea to ask them to drive and drive me home. My eyes may be very tired from the exercises and looking through new glasses experience I am going to have. 

I guess these are questions I will be able to ask when I get the glasses. 

Tunnel Vision

There was a tv show perhaps some time in the 1990s, that talked about a dad and his son who had some sort of degenerative eye disease. Meaning, their eyesight was being eaten away by something like maybe a bacteria. Whereas once upon a time, they could look and see everything, now their eyesight was becoming more and more narrow. 

It sounded like they were gradually starting to look through a more and more narrow tube, like a toilet paper tube. And all you can see is the circle out the other side of the tube. 

I remember being fascinated with this story, and also frightened. I love color so much. There is a question sometimes that people ask each other: “if you had to lose either your sight or your hearing, which would you rather lose?” I have never known what I would answer to this question. I love music with a passion. I have played violin for as long as I can remember. I have listened to all kinds of music my whole life. My mom used to take me to jazz bars when I was a kid. My dad would take me to go hear folk singers.

Some day, I will share stories here about my dad’s encounters with Bob Dylan and Ella Fitzgerald. My dad took me to the Smithsonian Folk Life festival. I sat in orchestras playing music for decades. I love music with a vibrant passion. When people ask me, “what kind of music do you like?” The only response I can give is: “everything except church organ music and bluegrass.” I love music. 

I also love color. I love using my eyes all day long to look at the sky, the trees, my sons’ faces, my sweet puppy girl. I love to paint, draw. I used to draw cartoons for my school newspapers. I have even illustrated a few books on “how to yoyo” with my dad who wrote them. My dad was Stuart Crump Jr., “Professor Yo-Yo.” You can find his books on Amazon.

I love matching colors and thinking about colors. 

My life feels completely rich with color and music surrounding me. 

I can’t imagine having to choose between “if you had to lose either your sight or hearing, which would you choose?” I don’t think I would be able to choose. 

I use my hearing (I memorize voices) to compensate for the fact that my eyesight is so poor. People call me on the phone and I know who they are from the moment they say, “hello.” I may not be able to picture their face, but I know their voice. 

One time, our family found an old cassette of our grandmother’s voice reading a paper she wrote. I knew instantly it was her voice. Her own daughter didn’t even know what the recording was. She said, “what’s that?” And I was perplexed. I finally realized she didn’t even know the sound of her own mom’s voice. To me, it was as clear as a bell coming through the cassette speakers. 

Would I choose to lose my sense of hearing or my sense of sight? I hope neither. And, I hope my eyesight will get better and better. I hope I don’t lose the extra amount of hearing I have long relied on. I love being able to hear things from far away. Birds, my sons when they were babies, music at a festival from far away, the band practicing at the local high school — drums reverberating around the neighborhood. 

Would you be able to choose - between having sight or sound taken away? What would you pick? 

 

Tape on my glasses

When I was a little girl, I got a blue pair of Wonder Woman glasses. Because I was diagnosed with a "Lazy Eye," (one eye wandering, while the other eye stays focussed on what I am looking at) the eye doctor put tape on the outside of my glasses. This was supposed to draw my eye back in because it would be looking through blurry tape and not seeing clearly. I haven't had those kid glasses since the early 80s. So I re-created what I'm talking about on my brand new pair of glasses.

I walked around for years wearing scotch tape on my glasses. So many people asked me, "why do you have tape on your glasses?" "Did your glasses break?" I was horribly embarrassed by this. I would answer confidently that I had a lazy eye and it was supposed to help me see better.

I went to my new eye doctor, who in this blog I am going to refer to as Dr. Magic, for the first time 2 weeks ago. On my second visit, he asked me to look at him and tell him what I saw. I told him he was moving in a "U" shape. And I indicated that with my arm.

He said he was going to put tape on my glasses. I thought, "here we go again." I told him: "yes, I used to wear tape on my glasses when I was a little girl."

Dr. Magic asked me, "where was it?" I told him: "on the outside 1/2 of my glasses or so."

He nodded and proceeded to put tape on my glasses. When he was done, they looked like this. (I took this photo - I always set them on the table upside down. So, they are upside down.) They are sitting on top of one of my many notebooks. This is my own artwork as the cover of the notebook.

Well, he handed the glasses back to me with the tape barely on the inside of my eyes. "That's unusual," I thought.

I put the glasses on and I looked at him. He asked me "what changed?"

I looked at him for quite a while. Then I said, "you're not moving anymore!"

It was exciting and also a bit weird. I hadn't really noticed that every time I looked at something, it was always flickering back and forth and rocking in "U" shape.

This simple fix made my life go from a moving ship to stillness. Wow.

I hadn't gotten around to putting this tiny tape on my new pair of glasses. As I typed up this blog post, I went ahead and added it now to my brand new pair of 3D magic glasses. So - here they are. My brand new pair of glasses. With scotch tape on them. haha.

I had been typing this blog with one eye closed. But I just got the tape on these and now I can type with both eyes open. What a miracle a proper pair of glasses can be, even if they need a tad bit of scotch tape on them.

Flickering Eyesight

So, I have known for a long time that my eyes don’t work together. It has taken me almost 50 years to be able to describe what I see to people. For most of my life, I just dealt with it and didn’t really think much about it. I actually thought that I looked through my left eye only, for most of the time, and that my right eye was just along for the ride — it being on my face and all and generally pointed in the right direction.

I know some people, we can look at them and know they don’t “see normally.” Maybe their eyes aren’t both aimed the same way. Maybe they are wearing an eye patch. Maybe they have said to you, “I am legally blind.” For whatever reason, you know they don’t see normally. They either told you, or you can tell.

I haven’t really ever known or acknowledged that I had an eye problem.

I went to Dr. Magic Optometrist, and he diagnosed me for probably an hour. He performed test after test on my eyes, determining which problems I have. At one point, I was so exhausted, physically, that I just started crying. Yes, I started crying at the eye doctor. It was hard work, trying to describe what I was seeing, to an eye doctor who has seen everything.

He was patient and kind and handed me the tissue box. He explained that patients of his often have to use the tissue box. 

During my appointment with him, describing what I see, I realized that I don’t just look out of my left eye. I actually alternate - very quickly - out of each eye. One at a time. Flick. Flick. Flick.Flick. Flick. Left. Right. Left. Right. Left. Right. Back and forth. 

I described this a bit to a friend of mine, who came up with this analogy. This analogy describes what I see better than I was able to. I am grateful for my friend who understands what I say so easily. 

Picture a stage with actors and props and it looks like the TV set of the TV show, “Friends.” Or some other sitcom that is familiar to you. 

There are two cameras. One is slight to the left of the center, and one is about 3 inches to the right, and maybe raised up about 2 inches. It’s got a different angle on everything, and it’s not perfectly centered. 

Ok, so the director of the show starts filming. But instead of using 1 camera, they actually do about 5 frames from one camera, and then they take about 5 frames from the other camera. Oh, and one camera’s view is slightly more blurry than the other one. 

In this way, the show is filmed. 5 frames from one camera, 5 frames from the other. It’s a “moving picture,” because the actors are moving around, talking, laughing. The furniture is physically standing still, but since it’s being filmed from 2 different angles that are alternating, it seems to flicker from one spot to the right to the other spot on the left, and back again, very rapidly. 

Now, picture that the director, to further confuse the audience, mutes about every 5th word that is said. So you, the viewer, are constantly trying to figure out the punch line, or the set up, because you can only hear every 4 out 5 of words. You’re missing a LOT of content. For one thing, you can’t look at one actor when they are talking. You’re having to alter who you are looking at, based on which camera is looking at the action. It might be the side view of one of the actor’s heads at one minute, and the next moment, it’s the front of their head and the vase right in front of them, that you can’t move, even though it’s blocking part of their face. Back and forth, rapid fire filming. 

This is what I see like. My eyes flicker back and forth CONSTANTLY. I get tired from all this conflicting input. So when I am partially tired and feel at ease (like when I am home, alone, or reading a book (and no one is staring at my face)), I will shut one eye. Usually my left eye if I am looking at something up close. Actually, as I typed this paragraph, I closed my left eye. I got tired of tilting my head to see what I was typing. This font on this computer is tiny tiny! Who made it so tiny? I will need to change this.

If I am talking with a person, I was trained as a young child to look at someone’s face when they are talking. It’s exhausting for me to do this, though. But I still do it, because “it’s rude not to.” I know people who are on the autism spectrum have trouble looking at people. I imagine that they also have so much input from so many places that they cannot filter out, so they want to look away, so they can process what they are listening to, without being distracted from what they are seeing. The same with me. I happen to also see double, at all times. Because my eyes aren’t giving me 3D input; they are actually showing me 2 different versions of the same thing, at the same time. So, looking at someone’s face, for me, is a LOT of input. It’s tiring. It’s also confusing. It’s so hard to concentrate on what someone is saying, when their face is right there, moving. It’s a constant struggle. I do my best. No wonder being with people and in crowds wears me out, but I am loathe to say, “I am an introvert.” 

Remember how I said the TV director is muting every 5th word? This is called, “suppression.” Suppression is actually written on my eye diagnosis. I suppress a LOT of information. Because I have double the input (is it really only double? It feels like 5x the input) from my eyes, I have to filter out a lot. My brain can only process so much at any given time, and then it has to suppress information, so it can sort out what it’s getting input from. 

When I am in a loud room, and someone is talking to me, I can see their face. I try to lip read. Sometimes I can do it. I would like to think I am pretty good at lip reading. But sometimes I just can’t do it. Like if it’s a noisy restaurant or a noisy environment. I simply can’t make out all the words. I can’t suppress the background information at all in an environment. My brain is already suppressing as much as it can of the visual input, and trying to sort out what I am seeing “how far is the table, where is my drink, what food is that, what smell is that, it smells really good, what color is she wearing, I like that sweater, what is the mural on the back wall depicting, what do I want to eat on this menu…..” All while getting double the visual input. 

Then, if someone is talking with me AND there is background noise, I can’t further suppress the background noise. And what happens is that I can’t hear what they are saying. I hear maybe every 5th word. And the words won’t make sense as a sentence. “Store, apple, brown, sister, 100.” I try very hard to figure out “what on earth are they talking to me about?” And I just can’t figure it out. It’s too much work. I don’t want to appear rude, so I nod and smile just like I was taught. And every now and then I may catch a little glimpse of what they are talking about, but I am honestly missing so much more than anyone knows. My brain can only suppress so much. And - it turns out - I miss audible sound because of my vision issues. 

I have had my ears checked numerous times. But you see, they check ears in a quiet environment with someone saying 1 word at a time. I can hear all the disparate words. One at a time, it’s easy. I never needed a baby monitor. My dad and I always listened to the radio on the lowest volume possible. No use turning up the volume and hurting our ears. We can hear quiet things from far away that no one else can hear. My hearing isn’t the issue. 

My eyes cause my ears not to be able to hear, because there is just too much input and I can’t take it all in. Suppression. My brain is choosing, as best it can, to sort out what is important from what is not, and can only do so much. 

I wonder what things will be like after I go to the weekly visual therapy. I guess I will (literally) see!