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It’s confession time. I love tatting. But sometimes I don’t like tatting. Shocking? This from the lady who is always saying how easy and fun tatting is, and just give it a try. Well, tatting is easy and fun, but sometimes my brain isn’t.

All right, collect your jaw and let me explain. I have always been very sensitive to light, crouching over books in school to create shadows, and reading in dim light so that my dad was always turning lights on for me (notice I said on, not up). I am also a very good reader but have always been exceptionally slow, and no speed reading course or vision therapy ever helped. Then a few weeks ago, when discussing certain reading difficulties in one of my teacher education classes, I ran across something called Scotopic Sensitivity Syndrome, or Irlen Syndrome, and was immediately like, “That’s me! That’s what’s been going on all my life! OMG!”

Three days later I was at the Irlen diagnostic center in Albuquerque and let them torture me with tests for two and a half hours, and walked away with a whole new perspective on life. Literally. (Okay, so I wanted to crawl into a dark hole, close my eyes and wait out the headache, but I also had a huge smile on my face.)

Irlen Syndrome can manifest in a few different ways, through sensitivity to lights (especially fluorescents), visual distortions, and depth perception problems. I am on the severe side of the spectrum of both the visual distortions and light sensitivity, and have moderate depth perception issues.

DO YOU SEE WHAT I SEE?

Could you read a book scrawled in marker on a car’s headlight? That’s what reading is like for me. Okay, that’s a bit of an exaggeration, but not by a lot.

When I look at a page of text, only the one or two words I am focusing on are clearly visible; everything around them is out of focus. However, the spaces between words on the whole page are intensely bright and blend together into rivers of light that flow down the page.

The space around separate words, too, is excessively bright and flickers intermittently, causing the shape of the letters inside words to run together and become confused in each other. An r and n together become m, l and o become b, o becomes c and c becomes o.

Whole words randomly disappear out of the line I am reading or move from another line into the one I am trying to decipher. As you can imagine, this makes the meaning of sentences quite confusing at times. Plus, since I can only see one or two words at a time, when I get to the end of each line it is a complete guess whether I will end up at the beginning of the next line, the one before, or the one I just read.

Sometimes I don’t even realize I’m rereading the same line till I’m half way through it, because the act of reading takes so much concentration that I often don’t take in the meaning of the words the first time through, especially if I am tired. All this makes the reading process a very tiring activity, and the more tired I am the worse the distortions become. It’s a bad cycle.

Numbers are even worse. They jitter around on the page so that I have to concentrate very hard to tell them apart. Numbers in a column or a row jump back and forth, never staying in the right place. To all of this add another layer of distortion: when I look at text, I don’t see one set of words but two. The duplicates hover around the main text in a vivid glowing white, like the reflection you see after getting hit with a flash bulb.

Lines are the worst, like in reading music. I played violin for four years and memorized everything. I memorized well enough to get second chair, second violin in my middle school orchestra for two years straight (in a section of about 40 violinists) but could not for the life of me sight read a note. I just figured that the notes crawling around the lines like ants and the spaces pulsating between lines was what everyone saw. That’s what you saw, right? Why could everyone else read the ants and I couldn’t?

For that matter, why could I easily add lists of three column numbers in my head but not on paper? To this day, I always add numbers at least three times, even when using the calculator, because the numbers move—both on paper and on the calculator buttons. In school, I could explain any math or science concept you could throw at me, and tell you exactly how to solve the problem, but often got it wrong when I wrote it down. SO frustrating.

Due to Irlen, I struggle with many everyday activities that most people take for granted: reading a book or a printed page, using the computer, concentrating on the professor in class, doing homework, writing in a straight line (even on lined paper) and copying from the board. Even dialing a phone number, walking around furniture without running into corners, catching a ball (what, you mean I’m not supposed to jump away?), and driving on a sunny day: sunglasses required. If I’m tired, the white and yellow lines on the road glow at me even at night. And yes, reading tatting patterns and counting stitches. All of this gets harder, more painful, and more tiring as I go, because the visual distortions get worse the longer I do it. These are only a sampling of things that scotopic sensitivity makes difficult or painful for me, and I finally know why!

WHAT IRLEN SYNDROME IS

As I understand it, scotopic sensitivity syndrome is a sensory perceptual disorder in which the brain does not correctly interpret certain visual information. The eye may work fine, but some signals from the eye do not arrive in the brain intact or on time, and the brain tries to compensate for the double image by filtering out bad information, but ends up distorting or confusing the location and appearance of images.

Scientists aren’t entirely sure yet why this happens, but one of the leading theories is that it has to do with the brain’s perception of certain wavelengths of light. While there is still something of a debate in the scientific community about what causes scotopic sensitivity and even if it is real, it has been gaining acceptance for 30 years and is now recognized by most of the scientific community. Personally, I’m sold. I’ll tell you why.

Helen Irlen first identified these visual distortions in the early 1980s (view some samples of distortions) while researching adult remedial readers—specifically, college students who were good readers, like me, but still had a lot of difficulty doing it. She also identified a simple and effective treatment: filtering the problem wavelengths through a specific color—because color is a wavelength! The waves cancel out, or reinforce, or something like that. See? See? Nifty hunh?

While not a cure, placing a colored overlay on the text or wearing colored glasses effectively reduces or eliminates the distortions for most people, including me! When I left the Irlen diagnostic center I had a set of colored overlays in my eager hands. At the end of the test, they went through a whole slew of colored overlays, and combinations of colors, and figured out which one worked best for me (different brains need help with different wavelengths). When I put them over the pages they had just tested me on, the words, pictures and diagrams that I had to concentrate so hard to decrypt a moment before suddenly stopped moving, pulsating, and swimming.

It was a deus ex machina. Let there be colored light. And there was colored light. Let there be a stillness in the light. And there was a stillness in the light. And the stillness was good.

I’ve been using the colored overlays since then, and they have helped immensely. I put them over every book, printed page, even my computer screen. When I read now, the flashing and pulsating lights go away, the text stays still, and my field of vision expands from one or two words wide to seven or eight. Which means I can see more of the text, and instantly read about twice as fast! I still have to guess which line on each carriage return, but I am comprehending more of what I read and don’t tire out nearly as quickly. I suspect that with practice reading static text it will get even smoother.

MY IRLEN OVERLAYS

Are you curious what my new favorite color is? I wonder if you can guess it from reading this very page. When I set up this blog I knew I didn’t want a white background (way too bright) or a “designer” background (too many elements to move around) so the only question was which solid color to use. As I was playing around with lots of colors, this deep teal was by far the easiest for me to read, so you got stuck with it too. It turns out that this is very close to the color of my overlays.

Do you like the site’s background color? Is it easy or difficult for you to read? Is it too dark? I’d really appreciate some feedback. It is only in the last few weeks that I am realizing that the rest of the world doesn’t see everything the way I do (blindingly bright), and that something that dark might not be wonderful for everyone. Here’s a secret. Even with the dark background, I still read it with my monitor’s brightness set to absolute minimum.

Here is a book with my new Irlen overlays. My color is a deep turquoise, almost a teal.Irlen Overlays Over Text 1What you are seeing is a set of three colored overlays taped together to make the color that works best for me. I have a fourth layer I can add in fluorescent lighting (e.g. in class) to make it even darker. Why?

I hate fluorescent lights. Can’t stand them. They are like daggers in my eyes after only a few minutes, making all my visual distortions worse, making it difficult to concentrate, and giving me constant headaches and recurring migraines. Almost every store, classroom, and office has them, and most other public places. One of the things I love about working in homes is the complete lack of fluorescent lighting. Apparently, fluorescent lights leave out some wavelengths and spike in others, making vision hell for people with scotopic sensitivity syndrome.

HOW I’M MAKING IT BETTER

There are a few things I can do to cope with SSS. Obviously the overlays to put over printed text and the computer screen.

Irlen also makes glasses that will help me filter the light for everything I see and not just while reading. Objects too will stop flashing and glowing, the edges of furniture and location of flying balls should become clear, and I should be able to open my eyes under bright lights and fluorescent lights without the intense pain in my eyes, headaches and migraines. I’m saving up for my glasses and will let you know how they go when I get them.

Here are a few other suggestions from the Irlen Institute which have helped me:

  • Wearing sunglasses, obviously. Been doing this for years.
  • Wearing brimmed hats to block light coming in from above the sunglasses. I’ve suddenly become a fan of hats.
  • Writing and printing on colored paper. The colored background works a lot like the overlays to reduce distortions. I’ve been using blue notebook paper and teal printer paper because those are the closest to my overlays that I could buy. Even those I had to special order to get a single color. I could only find variety packs in the stores.
  • Writing with colored pens, especially on colored paper. The lower contrast helps minimize the intensity of the distortions.
  • In the same vein, one of my professors likes to use the glossy white dry-erase board (ugh), and she agreed to use colored markers instead of black to lower the contrast.
  • The same professor uses an overhead projector extensively, which is so danged bright. I asked her to put one of the light grey Irlen overlays on it, under whatever transparency she is showing us, and it really helps to reduce the brightness. No one else in class minds and it helps me tremendously. I think it helps a couple other people in class too.
  • Sit between fluorescent lights instead of directly under them. It’s not as good as no fluorescent lights, but it does help.

TATTING WITH SCOTOPIC SENSITIVITY SYNDROME

So how does all this affect my tatting? Would you believe that I tat with my eyes closed most of the time? If my eyes aren’t closed, they are usually looking at something other than the tatting. I try to look at what I’m doing only when I’m joining a picot or if I have to count stitches or take something out.

Tatting for long periods is just as tiring as reading, and gives me a headache just as effectively. Reading patterns, with numbers crawling around the page, or reading diagrams, with lines jostling each other and numbers jumping from one line to another, and staring at tiny stitches to count them or pick them out, is not altogether fun.

Which means that I usually can tat for only 20 to 30 minutes at a time, or a bit longer if I take a lot of breaks, so it takes me forever to finish a project. But since I do in fact love tatting so much, I’ve come up with lots of little tricks to make it easier.

The tatting itself isn’t nearly as much work as reading the patterns, so I first laboriously recopy every pattern into my own sloppy handwriting to make it larger and the spaces between numbers greater. Then I very slowly tat one repeat of the pattern, rechecking every number and direction three or more times, trying to memorize it the first time through. Then I try a second repeat without looking at the pattern but still glancing at the first repeat to prompt me, and if I get it right I close my eyes and keep going, rechecking when I need to.

LIFE WITH SSS

It’s not just tatting. I’ve got a ton of these little tricks to get through a whole host of everyday activities, including:

  • Typing with my eyes closed. My accuracy, speed and comfort all improve.
  • Closing my eyes when waiting for a page to load on the internet to avoid the sudden shift between pictures. (I also avoid movies with frequent scene changes.)
  • Reading with one eye closed.
  • Reading with the book tilted or at an odd angle.
  • Cocking my head to the side to see something more clearly.
  • Using a finger to track the words when reading.
  • Looking away and then looking back to see if the text or object has changed.
  • Bending over books or sitting with my back to the light to create shadows when reading.
  • Using a second paper to cover up part of the page.
  • Using a bookmark, ruler or second paper on tests to bubble in the right answer for each question. Ditto for recipes and tables of contents where you have to track along a set of dots or across blank space.
  • Using another paper or straight edge above the line I am writing to keep my handwriting (somewhat) straight.
  • Taking frequent breaks or switching activities frequently to avoid tiring out.
  • Wearing sunglasses when driving at night in the city, to dim the bright traffic lights and car headlights.
  • When driving at night outside of the city where there are no streetlights and not a lot of cars, when a car approaches me its headlights seem much brighter due to the contrast and can be almost blinding. I steer by focusing on the white line on the far right side of the road and hope like hell the other car stays on his side of the road.
  • Covering my bedroom windows with blackout curtains.
  • And so much more.

The sad part is that most of this I didn’t even realize were adaptations or compensations until recently. I genuinely thought this was how everyone lived.

I am not a stupid person but there have been times when I felt dumb because I wasn’t able to do something that everyone around me seemed to breeze through. Why can’t I catch a ball, or throw a ball where I want it to go? I’ve had two sets of glasses break on my face from balls. Why is my handwriting so uneven despite hundreds of hours of handwriting practice? Why do I get violently nauseated after only seconds of reading in a car, while my cousins could read whole novels along windy roads?

Why am I such a slow reader? In college, my friends would all be finished with their homework while I was barely halfway through. Or in my education classes now, when the teacher asks us to read something in class, everyone else will be discussing it while I’m still trudging along.

Why did I have to work five times as hard to barely pass every math class when all my teachers agreed I should be at the top of the class? I gave up my dream of going to Caltech and becoming a physicist because I couldn’t do the math, even though I knew the math.

Why can I still not read music after four years of violin lessons and two years of college music theory? I tried to learn piano one semester. Reading two sets of notes at once? Absolutely impossible. Memorizing two sets of notes? Not worth the effort. So many things I could have done better at, learned better, felt better about.

THE FUTURE

I’m not one to dwell too long on could’ves, would’ves and should’ves, so let’s move on. What does the future hold? Now that I know what is going on, and what can help, I can see a whole new world of possibilities ahead of me.

The overlays are helping, but they have a lot of limitations. I really need my glasses tinted to effect the greatest change. Then what? Maybe I’ll curl up on the couch and read a novel for hours straight. Maybe I’ll leave a store or classroom without a headache. Maybe I’ll drive with more confidence. Maybe I’ll stop bumping into doorways.

Maybe I’ll tat to relax at the end of a long day, and read the pattern correctly the first time.  Maybe I’ll pull my violin out of the closet and try reading music again. Maybe I’ll read a recipe and add the right amount of flour. Maybe I’ll play catch with the kids. Maybe…

Note: If any of my experience sounds familiar to you, and you think you might have Irlen Syndrome, take a few minutes to complete a self-test and see if you are a candidate for a more in-depth Irlen screening.