This update is long overdue, and I apologize for those who have had to wait, but I wanted to do it justice. I was diagnosed with Irlen Syndrome, or Scotopic Sensitivity Syndrome, almost two years ago, and got my Irlen tinted lenses about a year and a half ago. Since then my life has been radically different. If you have no idea what I am talking about, read the two posts linked above (in order) before continuing.
I just reread the first post I wrote after being diagnosed with Irlen Syndrome, and got really depressed for ten minutes. Did I really live like that? Sadly, the answer is yes. But at the moment, it feels like a lifetime ago. I live in a completely different world now.
My mom once had a surgery that saved her life. She was in such extreme pain beforehand, that when they removed the problem, and asked her even hours later how much pain she was experiencing, on a scale of 1 to 10, she told them it was a zero. Hours after a long and invasive surgery, she felt no pain. It was that sudden and extreme of a change. My situation was different in that I did not realize beforehand that I had a problem. Or that my life could be better. I did not realize that I had a medical condition, that something so “small” as a miss-wiring in the brain, could be such a big deal. After all, my brain seemed to work fine. I did not have schizophrenia, was not blind, or anything else that I or others could relate to as obviously, medically wrong. However, an hour after my glasses arrived in the mail, direct from the laboratory in California, I sat down with a brand-new book and read 200 pages in three hours. That is five times faster than I have ever read anything in my life, and I remembered it, understood it, and was not at all tired. The difference was just as stark as my mom’s surgery, even though outwardly I didn’t have the normal evidence of change–scars, bandages, hospital visits, medical bills, doctors reports, etc.–that many people expect to see. All I had, to prove that anything was different, was my word on it.
And the glasses. I already wore glasses, but now they are blue. I have found, surprisingly, that many people write them off as “designer” sunglasses, and don’t pay them any attention. The problem with not having harrowing tales of illness or lab tests, doctors arguing over diagnoses, procedures to hope and pray for, crutches or wheelchairs or therapy or other proof that you are sick, is that people forget. One day a friend sees you with clear glasses, and the next with blue glasses. You laugh and chat and talk about how different things are and how much it helps, and then it is over. The next day they are on to a different topic and they never bring it up again. People forget so quickly.
Please don’t misunderstand me, I’m not fishing for pity. Pity is the last thing I want. And I don’t need to go on about it constantly, either. The problem is the disconnect. My life is not just better now, it is radically different in nature. And people forget. They forget that I’m not the same person, that my brain does not operate in the same way, that I don’t have the same abilities and limitations as before, or the same way of looking at the world. Once in a a while someone will throw out a casual comment, “So how are the migraines going? It feels like you haven’t had one in a while. Are the glasses helping with that?” Yes, they are, but that is honestly only the smallest, though most visible, evidence of change. (If you suffer from migraines, you know what a radical statement that is to make.) For the most part any evidence of illness and recovery have been invisible. Again, I’m not looking for sympathy, just acknowledgment. Some acknowledgment from other people that something was very, very wrong, and that it is better now. Some acknowledgment that my life is completely different now.
I can’t be too harsh with others though, because I forget too. Though I wish to clarify that what I so frequently forget is not an acknowledgement that there has been a change, but the degree of that change. I frequently forget how radical it is and that I am not bound by the same limitations as I used to be. Several times a day I will begin a task that used to be difficult for me (though I would trudge through it anyway) and still get a cringe in my stomach as I begin, forgetting that it won’t be so laborious, and then as I continue and notice how easy it is, the clenching relaxes and I hit my stride and continue on and finish more quickly, more easily, and without pain.
For example, I took German in high school and continued to learn on my own through college and later, but reading and writing were always difficult for me. I would subscribe to blogs in German with good intentions, but then would have to force myself to read even a paragraph a day, as it was so difficult, slow and painful. Right now I am half way through my 12th full length novel in German, all of which I have read only since getting my glasses. Even still, every. single. friggin’. time. that I pick up the book, I still feel like it will be next to impossible. 20 Minutes later I’m five pages in and only then realize that I can do it. When will I learn? How long will it take for this to become my new normal?
Nevertheless, in many ways this is my new normal. As I reread that first post, I realized that many of the “tricks” I used, to drive and read and dial numbers on a phone etc., I don’t do anymore. I didn’t even think about losing these behaviors; they simply went away on their own as I no longer needed them.
Yet some things are so ingrained in me, like the love of reading but difficult associations with it, that I expect it will take a while for those associations to fade away. I still find myself drawn to podcasts over magazines or newspapers, as I can listen instead of reading the text. I still avoid going into stores because I hate the fluorescent lights, though they do not bother me nearly as much as they used to. And I still leave the drapes drawn in my room most days out of habit, though I did take down the blackout curtains and will sometimes remember to open the drapes and enjoy the light.
Enjoying the light is new to me. I don’t mean man-made light, which is proof that the Devil exists, but natural light. Warm, beautiful and comforting. This is just one part of my new world.
I forget too, that I am wearing tinted glasses. When I meet someone new, it does not even occur to me that they cannot see my eyes, or that that lack might be discomforting for someone else. I forget to take them off for pictures, and end up looking like a bug-eyed alien, IMHBO (in my highly biased opinion). Because I am not seeing the blue tint, I completely forget that it is there and that other people can see it, until the rare occasion when someone mentions the glasses, at which point I do a double take and remember that I probably look a bit weird.
Maybe that is my general dislike of photos of myself that is speaking, or maybe it is because my glasses are so dark blue, or maybe (probably) it is because they are covering up what I consider my best feature, my eyes, but for whatever reason, I think they look weird. Nevertheless, that is not in the least about to stop me from ever wearing them, ever, you have my word on that, pinky swear, cross my heart and hope to die. They make such a huge difference in my life, that I can’t even imagine ever letting them go, not if you gave me a million bucks.
At least they didn’t cost a million bucks. The exam and tinting cost about $500, but since it had been many years since I got my prescription checked, I redid that and got new glasses as well, which added another $350 (no insurance). I paid for about half of it myself, and the very generous support of my mom and an aunt and a couple of wonderful friends who helped me, took care of the rest. If you guys are reading this, THANK YOU, THANK YOU, THANK YOU. This blog post cannot adequately describe the difference you made in my life. I love you and appreciate your wonderful help and my wonderful glasses.
What do I love about my new glasses? Let me count the ways. I love waking up without a headache, going to bed without a headache, and having no headache the whole day in between.
I was in a store the other day and a fluorescent light was flickering badly, and I noticed it but it didn’t bring the expected stabbing pain. I love that florescent lights don’t bother me nearly as much or as quickly anymore.
There is an app on my phone called EyeQ, based on a popular speed reading program that I tried, without success, many years ago. The game is supposed to train the eye to respond to letters and other new stimuli quickly. My best score before I got the glasses was 670. I love that in the very first round I tried, soon after I got my glasses, I scored 42,950.
This summer I pulled my old violin out of storage, and tried to play. I was pleasantly surprised that the pieces I memorized so long ago are still stored somewhere in my memory. The amazing part though, was that when I looked at the music, I could pick out the notes and they stayed in place on the lines and the lines on the page. I don’t have the time or motivation to take up the violin again at this point, but I love knowing that I could, and that I could actually learn to read music.
I love that I can throw and catch accurately for the first time in my life. In my classroom we play a game in which I throw a small stuffed animal to students, and they throw it back to me. I can actually aim accurately and get the parrot to the student, and catch it (instead of flinch or cower) when they throw it back.
I love the feeling of security when I am driving at night and the lights coming at me are in a specific spot, and not hazes of diffused light somewhere over there.
I love reading in bed at night and not conking out after half a page.
I love being able to work on the computer for longer periods and not feeling fidgety and distractible because I can’t stand staring at the screen.
I love that, now that I have been wearing and reading with the glasses for about a year and a half, when I take them off and read, the distortions I used to see are somewhat less prominent. Oh, they are still there, please don’t misunderstand and think this is some sort of a cure-all for the miss-wiring in my brain. However, I can see the very first signs that perhaps it is beginning to rewire my brain. Maybe in many years it will help to the point that I could lighten the shade a bit.
I have hope now for my future, for a future free from pain and frustration and poor excuses for poor performance. I’m not one to struggle with low self-worth or confidence issues for the most part, but watching everyone around me easily perform what seemed like simple tasks, and not being able to do them myself, always left a nagging question about my own intelligence and capability, that I was usually intelligent and capable enough to hide effectively. Now I know why I couldn’t do those very simple things, and it has nothing whatsoever to do with intelligence or capability. My brain just processes certain signals a little differently than most, and now I can compensate. The Irlen tinted lenses are not a cure, but they do effectively control the symptoms so that I can live and work and learn normally.
P.S. It turns out that my hearing had the same problem going on, so that I could not always hear well, either. I got that fixed, too, through something called Audio Integration Training. I’ll write more on this process in another post, sometime.
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