I previously posted what it was like to have a seizure. Now I want to share with you what it is like to have dyslexia. Two reasons. One, people are curious. Two, most people have misunderstandings about what dyslexia really is.
How dyslexia manifests in people varies. So while one person may not be able to read very well at all, another person with dyslexia might look like a pretty good reader leading to what some like to call stealth dyslexia. Stealth dyslexia often occurs in gifted people. Clever people figure out work arounds to the point that they go undiagnosed for most if not all of their life. This was me. I did not really figure out I was dyslexic until I was well into my thirties and deep into my research.
However, the signs were there from the beginning. I learned to read over night. Meaning I began just memorizing words at the age of 4. I never could tolerate reading the chapter books my friends were reading. If I had to read something for school, I usually would read until I was physically and mentally exhausted and just wing it. I was so good at recognizing the pattern a story followed, I could guess at the plot and the motivations of the characters. I also listened carefully to what my classmates had to say about the story and filled in a lot of gaps there. It is amazing what you can learn from textbooks by looking at the pictures and reading just bits and pieces of interest.
Dyslexia does tend to run in families (heritability of dyslexia (i.e. the proportion of trait variability that can be explained by genetic factors) is typically more than 50%). This is true in my family. There are no avid readers in my family minus a few nieces and nephews, and I attribute it to the parent to whom I am not related.
Dyslexia is not reading backwards. While I do have difficulty with right and left and directions in general, I “see” the letters just fine. It did take me quite a while to master the difference between a lowercase b and d. Same for p and q. I “know” the difference, but in some moments, I have to exert specific mental effort to make sure I am right. I can manipulate objects in my head in 3D very easily so really a b and a d are the same, just depends on which side of it you are looking.
Dyslexia is best described by Dr. and Dr. Eide in their book The Dyslexic Advantage. I agree with the Eide’s that dyslexic is an alternate brain structure rather than a disability. It is more a different way of interacting with the world. Dyslexics tend to like narratives rather than memorizing semantic data like dates or names. We also tend to be great at solving puzzles and thinking outside the box. Dyslexics are more likely to make connections where others do not leading to very creative solutions to problems. This can annoy my husband in conversation when I bring up a topic he feels is a tangent when there is a real connection in my mind. Ha!
Basically, I am an inefficient reader. I am slow. However, if I am completely hyperfocused, I can read pretty well. All the conditions have to be right for this to occur. I have to be well rested, not hungry, not distracted, comfortable, and wildly interested in what I am reading. This is why I can read about neuroscience but not the newspaper (or a textbook). I flew through the last Harry Potter novel. I have 100’s of books I have started but never finished. I never really “read” my textbooks. I used them to look up information.
I can read, but the effort required is huge. So when I was thinking I might want to study law (ugh), I quickly realized I could only read one page in the time it took my fellow students to read an entire case study. My law career flew out the window. I just could not keep up with the reading despite my incredible understanding of antitrust law.
I often have trouble sounding out new words or nonsense words marketing people like to make up (e.g. appeteasers instead of appetizers). I often cannot spell words I use almost daily like apologize or accommodation (and yes, I spelled both wrong again until the spell checker caught me). Vowels are the worst. I cannot hear, in many cases, the different sounds they actually make. The English language does not make it easy given the vowels make different sounds in different words for almost no reason. So, while I am quite intelligent, helping my first graders sound out words was embarrassing. They often corrected me.
I memorize words mostly by the way they look and by the shape. I even have colors, smells, textures, sounds, and feelings I associate with words to help me remember them. This adds to the amount of time needed to process even a single word. This is why words I have never seen before can be perplexing. It might take me more than an acceptable time to figure out how to pronounce the bugger let alone how I might remember it. I distinctly remember when I encoded the word encyclopedia. I was in third grade. I remember the smell of the room and the feel of my desk that I would obsessively organize daily. As I see the word I know the shape and size of it (one reason certain fonts and all capitals makes reading really tough for me). It has a musty smell similar to the old encyclopedias we used for book reports before the internet. It has a yellow color to it and an odd bitter taste sometimes crops up when I see it. The only reason I remember how to spell it was because of the cheer like chant I made up to memorize it. The emotion associated with the word is a jumble of curiosity and dread.
I remember my senior year in college when I was named a Collegiate Scholar in the College of Business Administration (Economics). I was one of 2 in my graduating class to receive such an honor. I graduated with honors and wrote a thesis on the European Economic Community and its effects on agriculture. I had good grades and quite the resume of volunteer and job activities plus I studied a semester abroad at Cambridge. I was not stupid by anyone’s definition.
However, as I was reading the letter over the phone to my parents, I could not pronounce collegiate. I just did not have that word memorized for some reason and was desperately trying to sound it out. I said “college gate.” After I figured it out when one of my professors congratulated me and said the word “collegiate,” I was so ashamed I felt like a fraud. Who was I to receive an award I could not even pronounce?
Another challenge dyslexics have is word blindness. I often have to proof my works 10 or so times to try and catch missing or incorrect pronouns. I sometimes replace words with similar looking or sounding words unconsciously. I don’t even catch them when I reread it because my brain knows what I meant and is not really reading the word. It is as if my brain has not gotten over the mistake. This is why proofing my work a day later helps enormously because by then my brain has moved on from its hangup on a word.
Extended time on SAT and ACT testing would have been a blessing for me. I took the SAT over and over but could never finish the reading section. I scored a very mediocre score. I was rejected from Northwestern and Stanford. I was completely devastated — all because of that reading score.
Now I lecture for Northwestern on occasion and I have to laugh. I even took some classes there after I graduated from University of Iowa just to prove to myself I could do it.
So, dyslexia does close doors for people. Resilience is what kept me going despite the obstacles. I just kept working to find my way despite my challenge. It was not easy, and I still to this day carry shame.
I read word by word. It is highly inefficient. Normal readers are much more fluent and can take in entire sentences or phrases at a glance. I have tried differing tactics depending on the text. Sometimes I just read a word here and there to get the gist of an article. If I come across something I cannot intuit, I stop and read it more carefully. I ask my husband to read contracts and IRS forms for me. Sometimes I read articles backwards. I get the conclusion and then go back for details to fill in the picture in my head. I cannot sequentially build information into a picture I do not already understand. Outlines make no sense to me. I had to write them after I wrote my essays for school.
To construct a formal writing assignment or lecture, I jot ideas down all over a piece of paper and connect them with lines. Then I write and cross ideas off after I cover them in the paper. It looks like a mess, but to me it is the only thing that really makes sense.
Lastly, many dyslexics’ brains do not hear (not in the typical sense of deafness) clearly. Northwestern’s lab, Brainvolts, has great studies on the brain maps of sounds heard by good and poor readers. The poor readers tend to have lots of maps for the same sound; they are inconsistent. Good readers have very consistent maps making decoding simple. This is why I need to be able to see someone’s mouth to understand them. I read lips. When I cannot see someone and there is any competing noise, I have a tough time understanding what was said even though I have no issue with my “hearing.” It is what my brain does with the sound after my ear picks it up. Auditory processing is not my strength.
What’s the sign of a healthy brain and a strong, future reader? Brain waves that, in spite of the noise, capture the richness of that tiny, little “Da” — things like timing, harmonics and consistency.
For example, every “Da” should elicit the same response from the brain. Varied responses to the same sound, says Kraus, are a big red flag:
“If the brain responds differently to that same sound — [though] the sound hasn’t changed — how is a child to learn?”
(excerpt from a 2015 interview with Neurobiologist Nina Kraus from Northwestern University http://www.npr.org/sections/ed/2015/07/21/423260864/the-test-that-can-look-into-a-childs-reading-future)
Some great things that exist today that make the written word more available to me is Audible. I can listen to a book on my smart phone, read by a human, and I can control the speed the person is talking. I am not mentally slow listening, so I crank up the speed depending on how well the person enunciates words. Given enunciation and inflection is critical to understanding, robotic or machine reading can be a challenge. This why much of the technology is not sophisticated enough to make a huge difference for a dyslexic. The best is when a textbook is online and a human voice is available to read the text to you. My daughter has these online textbooks and the readers are human with all the intricacies and expression of the human voice. My life as a student would have been radically changed by this technology.
Dyslexia is a blessing and a curse. I would never give up my gifts for solving problems or seeing connections where others don’t or my ability to visualize. However, do I wish I could pick up a magazine or a book and read it effortlessly with pleasure? Absolutely.