Dyslexia Described

My parents knew I had an issue.  They knew I had a long road ahead of me because of it.  And it didn’t matter to them.

“Dyslexia is a raw deal.  It’s hard to have, it is hard to understand if you don’t.  Life doesn’t care, get used to it.”

Admittedly harsh words, but after being diagnosed in the 2nd grade at age 7, that’s what I was told.  And it is shockingly true. Almost 45 years ago I got that advice, and to this day I still hear things from people about dyslexia that make me want to thump my head against a wall. 

We are the minority.  85 to 90 percent of the world doesn’t experience dyslexia.  If you are one of them, it is very difficult concept to wrap your head around.

And let’s be honest here; it’s easy to think that this “disability” is a very convenient excuse for being lazy.  Not at all unlike people who have never experienced depression, there is a persistent belief that if a dyslexic person simply ‘worked harder’ and ‘focused more’, they can ‘get over it.’

Well, that is simply not true, not in any way.  Life is one challenge after another for people with dyslexia.  To understand it, imagine for a moment having a superpower that is always in overdrive.  Think of Superman who can’t turn off the x-ray vision, or Spiderman that can’t turn off the web.  For a dyslexic, you simply cannot stop seeing everything from multiple angles, and this makes it very challenging to focus easily on one.  We are forever in a crowded room with 50 people all talking, trying to listen to one person 20 feet away.

I never thought of dyslexia as “a gift”; but that doesn’t mean it is a curse either.  It has clear advantages.  Numerous studies have shown we can do things others can’t.  Try this exercise; imagine a Rubik’s cube in your head.  Now rotate it around in random directions, and keep all the colors in the correct position. And now, speed it up.  For me, I thought this was something anybody could do, because it is so simple for me.  Imagine my surprise when I found out most people can’t.  However, that “ability” has a terrible tradeoff; it is hard to prioritize or make sense of all those perspectives.

I am going to swallow the bitter pill here; we are very hard to live with, and we can be exceptionally hard to love, because our brains work so differently.  My family loves me, of that I have no doubt, but I also know that day-to-day living with me can be a ticket to insanity.  I have joked with people that “If I had to live with me, I would have killed me a long time ago”.  My wife really should get credit for not having a felony on her record.

We will forget simple things we did an hour ago, but can recall complex things from the past with amazing detail.  I can recite every one of the 13 addresses I have lived in my life, but can’t tell you where I put my wallet an hour ago.  We are convinced we did or said things we didn’t, and we are usually either incredibly messy and disorganized or annoyingly organized and precise.  This is because we have no dimmer; the light is on or it is off.  And don’t even get me started on being social; most of us crave being around people so we can observe and learn, but hate being around people, all at the same time.

Do you live, know, or love a dyslexic?  It helps to understand more about dyslexia.  At the very least, you are less exasperated and more sympathetic.

Here is what I can tell you about me and the mind of this dyslexic;

There is a popular belief that dyslexia is just struggling to read, write, or do math.  Most annoying, too many people think we ‘see things backwards’ (Please, stop).  This is simplistic and in this day and age with all the information available, kind of dumb.  We see the world in a completely different way, and we communicate differently.  We want organization but struggle to organize things.  These things impact almost all aspects of our lives.

Most dyslexics are very intelligent (not me, but most of us), but we also come off as ‘odd’ or ‘weird’.  When you clearly see so many different perspectives at once, it is very hard to converse in a linear and coherent way.  And that issue is honestly the easy part of all this.  Because ideas come and then disappear, we do not have time to check if our thoughts are suitable for conversation, and fear that we will forget it; this means we know there are times when social rules should be obeyed, but can’t be.

Our brains cannot process letters and sounds as easily as you can.  Because of that, our heads have to work exponentially harder just to accomplish a basic level of communication.  This makes reading, using numbers, and focusing on details exhausting.  For those that are not dyslexic, think of how a person who learns a foreign language operates; they have to take in the non-native language, convert it to the native language, think of a response, convert it back to the non-native language, and then say it.  That is how a dyslexic person communicates 100% of the time.  That is even how our own thoughts work.

There are days when a dyslexic appears on top of everything, followed by other days you wonder how we managed to get out the door in the morning.  This is absolutely random, and doesn’t have a tie to amount of sleep, number of tasks, or anything.  It isn’t “stress” related; there’s no pattern and no explanation. It just is.

The laws of physics, mathematical logic, or the impossible don’t really have that much weight as we work things out; ‘how it is normally done’ rarely (if ever) is considered.  To an outside observer, this comes off as thinking ‘out of the box’, and is not rational.  As this is going on, we are drinking from a fire hose; we can’t always take in everything.  So, patterns and context are not just important, they are critical.  They fill in the gaps.  We need patterns but don’t think in patterns.  It is a true dichotomy.

While we don’t ‘read things backwards’ (again, please stop), sometimes words will appear to move on the page.  Some dyslexics I have met say words sometimes appear to roll off the edge of the page.  Either way, I can’t begin to tell you how challenging it can be to read sometimes.  I heard once the perfect description; ever seen a code in captcha that you have to punch in to a webpage? Imagine reading a whole book like that.  Put another way, try to read a book through a magnifying lens that a child is holding, and moving all over the place.  Fun fact: a 2017 study identified that dyslexics can see the word ‘cat’ more than 40 different ways.

When you see so many possibilities in everything, thoughts are more like very important soundbites, and can be garbled and distorted; and the list is constantly being edited.  It is a continuous challenge.  This is the kind of thing that makes our ‘special gift’ a nightmare.  The confusion and frustration that comes with this inability to stop thinking and focus is simply depressing when we can’t make it happen.  Trying to turn that off to do something simple as sleep is a struggle.

Dyslexics have information routing struggles.  Things I said, and things I thought sometimes go to the same place, so I don’t know if I actually said it or not.  There are times when I will swear on my mother’s departed soul thatI told you something that I did not, or swear that I never said something I probably did.  It is because thoughts are often ‘scenes’ that play out, and over time, I can’t remember if it actually happened or not.  Having to ask people all the time ‘did I tell you this?’ or ‘If I am repeating myself…’ is as tiresome as it is embarrassing.  Many times, we will express ourselves in such a way we think is crystal clear, and have no idea that it didn’t come across coherently because we assume part of this, we told you before.

So few schools have any ability to spot the signs because not nearly enough educators learn to spot them.  According to the Mayo Clinic, dyslexia commonly goes undiagnosed for years.  Many people are not diagnosed until well into adulthood.  Unfortunately, those people often exist believing they are stupid or slow.  I was identified in 2nd grade, but by then there was solid damage to my self-confidence that still exists.

I was positive my daughter was dyslexic.  Two school districts in two states said I was wrong.  We finally got her tested because the school wouldn’t, and she does in fact have dyslexia.  Want to know what an absolute failure I felt like?  I let a school district make a determination that my daughter had to deal with.  I will go to my grave feeling guilty about this.

As I said earlier, dyslexics are highly visual.  We think in pictures, and we often use visual aids to help us plan and organize.  When I was in the Marine Corps, I was incredibly talented with a compass and a map.  It was nothing at all for me to look at a map, then look at the terrain, and know exactly where I was.  We often carry on conversations, complete with pictures, with ourselves.  I am usually unaware when I am doing it, and am often caught talking to myself.  I have had full on arguments with myself, and my wife thinks I am on the phone with somebody.

Please know this.  Dyslexia is not ‘curable’.  Their problem will not ‘go away’, or ‘go into remission’.  Obviously we learn to read and spell, but we will always have dyslexia.  The worst thing you can say to a dyslexic is ‘slow down and focus’.

In the last 10 years, there has been a lot of progress understanding dyslexia.  It had been proven that there are physical differences in our brains.  In the ‘normal’ brain, the hemispheres are not the same size.  One side is approximately 10% smaller than the other.  In dyslexics they are the same.  We also underutilize our left hemisphere (area required for reading), and the bridge of tissue between the two sides of the brain doesn’t look or function in the same way.  Our brains don’t always direct information to the correct place for processing.

There is no question that people with dyslexia are intelligent.  But we are also fully aware that other people can read and write better than we can.  So, many of us feel stupid compared to other people.  I certainly do.

The very frustrating part is that there is no ‘typical dyslexic’; no two people have the exact same symptoms. People have all, some, or just one of the classic symptoms, and usually some really oddball ones.  You have people who lose things, have poor organization skills, are slow at reading, have poor comprehension, have difficulty organizing ideas to write, or have difficulty processing auditory information.  For me, on some days I struggle to sequence simple things like the days of the week.  Also, even with friends I have known for decades, there are times when I am looking right at them and can’t remember their name.  Other times a name will get associated with a person and I cannot change it.  My next door neighbor (for years) is Tonya.  But for some reason, my brain decided she was ‘Natalie’, and on some days, I cannot remember her actual name.  As bad as this is, it gives others the impression we don’t mean much to them.  It’s painful, especially when we do.

There are times when I am highly aware of what is going on around me, but nonetheless I appear lost.  I will recognize a word in one sentence, but can’t recognize it in the next.  The brains of dyslexics are very fast, but are processing exponentially more information, so appear slow.

People with dyslexia are often excellent at reading people.  We notice the small and insignificant signs that tell us about them.  Generally we have great “people skills”.  We usually have fantastic long-term memories, and rely on them.  We are exceptionally good at spoken language, and are over-represented in professions where spatial ability is needed (architects, engineers, artist, craftspeople).  We are highly intelligent, and intuitive.  Hard to believe we, at the same time think we are dumb, but there you go.

Thomas Edison, Richard Branson, Henry Ford, Cher, Stephen Spielberg, Whoopi Goldberg, Anthony Hopkins, Jay Leno, Gavin Newsome, David Rockefeller, Charles Schwab, Helen Taussig; all dyslexic and all have changed, and continue to change, the world we live in.

In short, this is me.  And trust me, I am just as frustrated at my inabilities as you are (and I know you are).  I would give anything to take even a short break from the way my brain works.

But, I can’t.  What I do instead is rely on the people that love and care about me, to help me interpret the world, and to help me function in a world that is not designed to work in the way I think.  I get it; I can be frustrating to work with, to be friends with, and for sure to love at times, but I have a value that I hope makes the cost worth it.

If you know a dyslexic, remember that the person is daily fighting something you cannot imagine.  They can be frustrating, stubborn, and hard to understand.  But likely they are also caring, driven, and may one day do more than you can possibly believe.  This is us.