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Living with Dyslexia

My Life as Genetic Outcast

Think about what it would be like if on every level you seemed to be a completely normal person but there was a genetic difference that caused you to stand out. Often you are labeled as lazy, slow, slothful, without discipline and at times just plain stupid. Not because you were less intelligent or were mentally deficient but because you see written language differently and in some cases, your mind interprets differently.  


When considering the uses of the written word, we don’t seem to realize how new of an invention it is and how only until the modern area was it a sign of intelligence. There has been this concept since the middle of the 19th century that if we could teach people to read and write, it would launch a golden age and end poverty. It quickly became a standard of measuring one’s intelligence. Those that couldn’t read or write were considered Stupid, Uneducated, Lazy or sub-human. The increased use of the written word in daily life has made it almost impossible to function without at least the most basic ability to read and write. 


From early on in my education I knew that was something different about me. I saw the written language as some kind of secret code that everyone seemed to have the key to but me. While I excelled in Math, History, and science, I was always limited by this secret code. There was a number of titles thrown at me during my elementary education. Underachiever, lazy, behavioral problem, and even anti-social. It was confusing and embarrassing to watch as my fellow classmates who often struggled with even the simplest of concepts, would excel well past me and I kept being delegated to the slower learners programs. I quickly began to see school as torture sessions involving material that was years behind me.


I’m not saying there weren’t members of my family and teachers that tried to help. My Grandmother who was a school teacher for more than 40 years would drill me with flash cards and read with me on a regular base. She instilled a love of fiction in me that I have to this day. The education professional approach at first was to get me tutoring and have me stay late at school to help me through it. This soon turned to frustration and endless supervision as I struggled through the set reading and writing assignments. Toward the middle of 3rd grade, I had completely lost all respect of the education system and authority in general. They just couldn’t see that I saw the text differently. Toward the end, it was more about supervision than education. 


The part that they didn’t understand is that my mind works differently when addressing written text and images. I simply do not see them the same way. While with math I excelled because I saw patterns and logic, the English alphabet and its way of combining letters didn’t have these patterns. Also, the way that sentences were constructed made little or no sense. I would often completely skip over words that seemed unimportant. It was like my mind seemed to be only interested in the meat of the writing and had no interest in the window dressing.  So, my mind would skip adjectives, pronouns and a few verbs here and there. Part of this was because my mind was moving much faster than my reading and writing skills. In fact, some of the same methods I was using are used by speed readers.


The solutions I was continuing to get from those around me, were such helpful hints such as 'sound the word out'. Great wonderful but if I can not recall what combination or with English, number of combinations make up that sound, it’s not going to work. Even to this day, it comes down to memorization of a set of base words that I can use to remember the pattern of sounds. For example, take Experience, EX comes for Exay, Per comes from Her, 'inence' comes from Fence. Now if I lucky, I’ve used the word enough to remember the “I” or I will fall back on one of the words that I used the most over the last 23 years 'Piercing'. The reality is that it is much simpler for me to memorize words than it is to sound them out.


Another great suggestion that I heard endlessly was looking it up in the dictionary. Ok, great but what if I only can figure out the first letter or maybe the first three? Imagine trying to spell, solution and being unsure if it starts with “Sol” or “Sul” or “Sal”? Because I don’t know if I’m alone in this one but I’ve heard it pronounced Solution, Sulution, and Salution. At any rate, imagine tracing your finger over every word that starts with SA, then SU and then SA. Even then you would have to rely on the definition to make sure that it is the correct word. 


Without getting a solution for the educators in my life, I adapted in my own way. To this day, my spelling isn’t the best, if you have read some of my blogs, I’m sure you have caught a few misspelled words that even spilled through spell check. However, it is a great deal better than it once was. This is largely due to me simply memorizing spellings. The more words I memorized the better my spelling became. With reading, I learned early on to read around words that I couldn’t figure out to gain their meaning or often to recognize what the word is. In a way, my mind was already doing this on its own. What I had to do was train my mind on what words not to skip. 


Now dealing with schooling in general, I took a completely different approach and one that would plague me for the rest of my education. First, my handwriting which I had somewhat excelled at became completely unreadable. This was especially true if I came to a word I didn’t know how to spell. Written homework was to be avoided at all costs. Often even in high school when I would turn in homework, the teachers were completely confused because I was excelling on tests and class discussion but what I turned in was so littered with misspelled words and gram mistakes, I was accused of cheating a few times or my favorite, of being just plain laziness. Proofreading is not something that works for me. Unless I come back to the written text months and even years after I’ve written it. For some reason, my ability to proofread the material improves(In fact, I'm editing this blog a little over a year after I wrote it and even though I proofread it before posting it, I missed a number of errors that seem easy to find now).  No one has ever been able to explain this to me. I can often spell a word at one moment but draw a complete blank sometimes minutes later. I’ve read my writing where I’ve misspelled a word three times with three different spellings and then spelled it correctly a few paragraphs down.


My comprehension of the spoken word has always been high. I learned early on to pay attention to lectures and get involved in class discussion. Surprisingly, I retained the knowledge very easily. Often scoring on the higher end of the test results. Even when I did struggle through reading a book, my comprehension could be called upon to give very detailed reports on the text. If I was forced to write out the report, I would grade low due to misspelled or missing words. So, here comes that laziness label again. 


Reading aloud was avoided at all costs, I would fake illness or do something to be sent to the Office to avoid struggling with reading aloud unless I knew the text well enough to recite it almost completely from memory. Many of my early movements into out and out rebellion and criminal activities started in Grade School. Faking sickness was the most common and easy way to cut class, if that didn’t work, I would simply cut school and hang out in one of the cornfields around the neighborhood. I discovered a box of canceled checks around 3rd grade and began forging my Mother’s signature on notes. By Middle School, I don’t think she even knew if it was her signature or not.


Many see the main clue to Dyslexia as transposing letters and numbers. There were signs of that in grade school. I struggled with lowercase Bs and Ds. Cursive was the blessing that ended that issue, I would just imagine the cursive version of D and decide from there. Also to this day, I struggle with left and right. I have to picture something in my head like throwing a ball or hitting something to remember which is my left or my right. As far as number and letters switching when I look at them, I’ve never noticed, they always seem to be in the same order to me. Maybe they appear different to you. However, I’ve had employers ask me if I was Dyslexic after reading an application because I had transposed letters. Something about the stress of trying to be perfect on an application brings it out. 


My mother was a loyal viewer of Daytime Talk Shows most of her life. In a way, the 1980s was a golden age for these talk shows that seemed more about informing the public then the freak show they became. One of her favorite and most trusted was Phil Donahue and by his show, my mother was introduced to Dyslexia along with countless other Americans. I’ve tried to search for the episode but what I can gather it appeared in 1981. She immediately contacted my pediatrician but he didn’t seem interested or was uneducated on the subject. She dug in and contacted my Eye Doctor Dr. Fingerman. He was fully aware of the condition and wrote a letter to the insurance company and the University of Iowa stating that my problem with reading and spelling wasn’t due to an issue with my eyes and suggested that I be tested for Dyslexia.


The problem with being diagnosed with disease or disorder is that it is a double-edged sword. Yes, it is wonderful and great to be informed about what your issue is but at the same time, it will be a label that you will live with the rest of your life and there is simply no cure. In the 1980s it was defined as a learning disorder. Which I guess, yes it is but the reality is that it is a learning disorder that may not exist if reading, writing, spelling, and math were taught differently. The disorder was first coined in 1887 by Rudolf Berlin, as someone with average intelligence that has difficulty with learning reading, writing, and spelling. Not surprising that this was during a period where reading and writing began to become more commonplace. A lot of my anxiety about being diagnosed with dyslexia was that I would be labeled as having a learning disability. 


So when I was loaded into the car for the 2 hours trip to Iowa City, I have to say, that I was hoping not to have Dyslexia. I could have easily lived with being considered lazy, to be honest. However, I was diagnosed with Dyslexia when I was around 11 years old. I could tell that it was a great relief to all the adults around me because it proved that they had not let me down. Well, some had but a majority of them just didn’t know how to help me. This would be an ongoing problem well into High School and beyond.


Dyslexia kind of became the star of the LD world in the 1980s. Many theories and treatments were suggested. The plain and simple truth is that no public school in the United States had the resources or understanding needed to teach someone with the condition. I say condition but it really isn’t. The fact is that it is simply there is a discount with the area of the brain used for language. A person with Dyslexia uses other parts of the brain when dealing with the written word. It is why some have found, including myself that reading aloud to yourself helps with comprehension. It’s a genetic, physical difference not an abnormality but an adaptation. It is why often those with Dyslexia excel in creativity and are more prone to think outside of the box. The condition tends to cause one to focus on these strengths and find an answer to the problem that is outside of convention. 


In a public school, the only real option would be to place me in a special ed class with students with a wide range of mental, emotional and physical difficulties. Once you stepped foot in that classroom, you were stuck for life. The educational curriculum is often set to the level of slowest and least intelligent students to make sure everyone gets through the class. Think about that for a moment, you are of average intelligence or according to my IQ test well above average intelligence(by the way I don’t believe in the IQ tests as a standard of intelligence but felt it should be mentioned to fully understand what it would have been like) and you are placed in a class that ensures the kid that can barely function is able to pass. As an 11 year old who was already bored with what he was being taught, can you imagine what would have happened during that 7 year march to High School Graduation?


After a long discussion with teachers at my school and one who still insisted that I was fooling everyone and was just plain lazy, my parents decided to be proactive and put me in a private school. I started 5th grade at Grandview Park Baptist. At first I remember being in a special needs class but for some reason that only lasted a year. Otherwise, the main difference was instead of a lower grade or getting detention of not doing homework, I got a paddling. This did nothing to improve my “Laziness” and only caused me to slip further behind and increase my general dislike of authority. One thing positive that came out of the experience was that I did learn to control my anger to a degree. Fighting became less an issue during these years at least at school. Everywhere else, not so much. Also I learned to keep my mouth shut when surrounded by those that believed differently. No matter how crazy they sounded, I’d nodded and smile.


My life as a privileged private school boy came to an end when I flat out told my parents that they were wasting their money and that I wasn’t getting any real help. Though my reading was improving, it had nothing to do with the school at all. It had to do with my latest passion, BMX, and Skateboarding. During the dark ages of the 1980s, the only way you really learned anything about subcultures was by reading magazines. Luckily there were a few on the market that sparked not only my interest but my imagination. Every month I would scrape together a few coins and buy BMX Action, Thrasher, and BMX Plus. Others would follow but they were the big three. I would read through them from cover to cover each and every issue and dream of living the lifestyle of my new found heroes. Then came Punk Rock and being in the isolated Midwest without a car, my education of music began with Flipside, MRR, and countless local zines. One unforeseen help but I must mention it was pornography. As a teen, it was hard to come by and if I got a magazine I usually wore out the photos pretty quickly. So, the long-term worth was in the fiction and the letters. 


I had always loved fiction, some of my most pleasant memories are of sitting with my Grandmother as she read aloud to me. We read novel after novel over the years. From a young age, I would often create short stories and write lyrics in my head. So the love of books and writing were instilled in me. Though I don’t think unless I was assigned a book, I read much of anything other than magazines up until 9th grade. I wouldn’t have even considered the idea of reading for pleasure. When I reached East High School that would change forever. The only real “special” class I took was a read improvement class. It did help that I had a bit of a crush on the teacher, but it introduced me to a lot of teen fiction that I enjoyed. Mostly S.E. Hinton.  I related to her universe where kids had to rely on themselves and each other and not adults. Also, the idea of authority oppression based on being different or less socially accessible. One of the key motivation was that we would be assigned a chapter to read and then would have this great discussion on what we read and took away from it. It was like a book club.  


This would lead to Steinbeck and his almost socialistic view of the world. Even when the books were assigned to me later, it seemed that the teachers that claimed to be experts on his work didn’t get his rebellious anti-establishment stance. They were too wrapped up in the descriptions and mechanics to get the meaning. After I’d read most of Steinbeck, I moved on to all the great authors of the 20th century, Fitzgerald, Hemingway, Faulkner, etc... I discovered the gripping joyfulness of pulp fiction in Hammett and Chandler and then moved on to the Banned books, reading Miller, De Sade, Bukowski and countless others. This would often confuse my teachers to say the least. They often felt that this was far beyond my reading skills or maybe what they were assigning just didn’t appeal to me.


In a way, I used the knowledge of my dyslexia as kind of a get out of jail free card. I’ve often wondered if I would have been more upfront it would have made the experience better. With the growing exposure that dyslexia gained in the 1980s, there was a kind of blowback to it. Some claimed it didn’t exist. It became the subject of many jokes and still, it was and still is considered a learning disability. I let very few people know that I was dyslexic. In part to fit in but also because every time I’ve ever expressed it, the other person either assume that I’m joking and you can see the anticipation on their face for the punch line or states that they think they have it. Let me tell you, people, there is no thinking about. If you are an adult and struggled in school, you know that you have it. I doubt you were reading at a 2nd grade level in 6th grade, that doesn’t seem to get by the education system, someone would have noticed. Just cause you can’t add from time to time or remember how to spell a word from time to time, doesn’t make you dyslexic.


A few Teachers in High School adapted to my needs. One English Teacher after suffering through reading a couple of essays and reports I had written, asked me to read them aloud to him. He was taken back at how I translated the unreadable DaVoish on the paper to a good essay. From that time on he had me come in at lunch and after school to give all my written assignments orally.  It took the time that he could have focused on other matters but it made a huge difference in my grade and my high school experience. I don’t think I ever thanked him properly but Thanks, Mr. Kelly.


Other teachers followed suit but some didn’t. I remember one College Bound English teacher that refused to accept anything but written assignments. Endlessly she suggested that I drop the course and told me that I wouldn’t make it in college. Even suggested the military or factory work. One memory that stands out is meeting in the library to get help with an assignment. She was aware of my dyslexia but claimed that it didn’t exist. In fact, the session ended with her screaming at me that I was simply lazy and didn’t have the work ethic to compete with her other students. She just didn’t understand that no amount of proofreading on my part would end the spelling errors. I stuck to the course and squeaked by but it left a bad taste in my mouth. Over the years, I’ve come to believe that it had more to do with her own ego than my spelling ability. I’ve never understood why spelling would affect grading. If the meaning of the answer is there and correct, what difference does it make?


I did enter college after High School but it wasn’t my dyslexia that would shift my interests away from college but my choice and career. It wasn’t even the career as much as the professor's description of the career. As an adult, I see that he was more about reducing class size than teaching but I have to admit that I wanted to go in a more creative direction. Just wasn’t sure how to go about it. I fell into jobs that didn’t involve a lot of spelling. For example, Third Party Collections. Since everything was based on a set of shorthand codes, I excelled at it. I did it for 6 years till the burnout hit and I discovered piercing.


In day to day life dyslexia still affects me. I remember when I mentioned to my then girlfriend that I was starting a site for the business, she didn’t seem excited and tried to get me not to do it. I did it anyway. Quickly creating piles and piles of content. Over the years I’ve had a lot of people help with editing, girlfriends, friends, relatives, and even complete strangers. From time to time, I have people send me completely edited blogs out of the blue. Of course, there is always the trolls but you know what? They really are few and far between. Spell correction has been a godsend. Also being able to search on google for a spelling. In some ways, it has always affected my writing because I will often change a phrase because I can’t remember how to spell a keyword or use a word with a similar meaning. I’ve also learned that my spelling of words improve if I use them over and over. When I’ve worked on certain projects where words are repeated over and over, I retain them.


When I first starred piercing, I didn’t really see dyslexia affecting it but I do more writing today than I think I have in my life. Between the websites, text messages and emails, I’m communicating through the written word a number of times a day and I tend to be long-winded. Autocorrect has been helpful to a degree but often makes posting from the phone or sending a text very frustrating but I don’t think I’m alone in that. Typing does seem to be much easier than writing words out for some reason. There is something about the interaction that is different. Where I have been struggling lately has been the Talent Buying which often involves countless emails, posting to social media and website. Designing posters is one of my favorite passions of late but I have to be careful because there is no spell check in GIMP.


I think one of the two most interesting things I’ve learned recently about dyslexia. The first is that it affects my ability to remember names. This is something new to me. Over the years I thought it was some kind of social skill that I hadn’t picked up. I tend to remember people based on context or an interesting conversation that we had. My brain tends to focus more on what it feels is stimulating at the time. Often I have to meet someone a number of times before I remember them let alone their name but if they bring up what we talked about 5 years ago at a party, I will remember at least the conversation.


The other one is that recent studies have noticed that when a dyslexic person reads or writes, the right side of the brain is stimulated in a way that non-dyslexic persons aren’t. We tend to possibly rely more on the subconscious. This is interesting to me because I’ve always found that my adaptations and workarounds relied on viewing the problem outside of the box. It might explain why we tend to be more creative.


In concluding, this is just a small look into me dealing with this. Everyone is different and like a lot of conditions, it tends to be a large net to capture a lot more individual issues. If you are dealing with Dyslexia or the Parent, teacher or friend of someone who is dealing with Dyslexia, here’s what worked for me. 

  • Memorization - Both in spelling and reading. Pick out base or root words to focus on and then build you rhyming skills. My love of music and years of writing lyrics may have helped. 
  • Don’t Stop - I found it is much easy and productive to write out everything completely and then deal with misspelled words and grammar. If you tie yourself to stopping every two minutes to figure it out, the exercise is completely frustrating. I often refer to it as writing in DaVoish and translating into English.
  • Read Out Load - Due to the fact that we often skip words, reading it back aloud will key you into these easily, With time you will learn to almost read everything out ahead of time and then type it out. I often write in my head for days before I commit to page. Much like memorizing a speech beforehand.
  • References - I have stopped doing this because of the internet and spell check but I used to have a list of words that I had issues with. Odd spellings and such, that I could reference. Also helpful is spelling words that sound the same. 
  • Give oral answers - As I mentioned presenting a report or essay was a great help. I’m not saying don’t commit it to paper first but ask if you can read it. I also found that if I practiced beforehand, I weeded out misspelled words, missing words, and grammar issues.
  • Find a Passion - Mine was BMX, Skateboarding, and Music. I needed that drive and desire to fight my way through those pages to get that information. Sure it might take a while but it will be worth it in the long run. Finding that love of reading is important in anyone’s life. The fact is that I still to this day read about 15 to 20 books a year. This is important with anyone. Find the passion and you'll read for life.
  • Grouping words - I often group words based on how they sound. In most cases at least one of those words I have memorized the spelling of. So, it gives you a base to work off of.
  • Spell Check - Personally I like to everything in a google doc and then cut and paste it where it is going to be published. This will not replace reading it out loud or proofreading but it will take some of the stress out of it.
  • Grammarly - This is a recent browser extension that I have been using with Google Chrome. I'm a huge fan. It doesn't work in all text fields but it will point out not only misspelled words but grammar mistakes and words that might be spelled correctly but are the wrong word. Anyone that has relied on autocorrects or Spell Check has experienced the case where the misspelled word was replaced with a completely different word.
  • Type it out - I really don’t see why teacher still insists on having kids struggle with writing anything out after maybe 4th grade. Typing something out will make editing much easy and make it more readable. 
  • There is no “Right” way to Learn - Our education system is set up to be effective for a majority of students. In the US it has become increasingly focus not on learning but good test results. Personally, as a former student and a father, I find it to be lacking even with the most gifted of students. Find the method that you learn best by and don’t focus on the achievement side of education because it is completely useless. In the early years, education should be hands-on and learn while doing not long lectures and endless memorization for a test. It should be about building points of reference to build knowledge on not doing hours and hours of homework. It should foster a desire to explore subjects further and that desire will develop into adults that continue to self-educate outside of traditional education.
  • You see things differently, they must adapt to you - Bad students are created by bad teachers. Teachers that excel instills a desire to explore and take on challenges in a new wave. That often involves reinventing the box. Parents should always approach education as their responsibility and I don’t mean yelling, “Do your Homework” but taking the time to see what is working and not working for your child.


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