Saturday, March 15, 2014

Irlen Syndrome

(Note: Another blog post despite Lent. My experience yesterday has been surprising, and possibly important in my pursuit of answers.)

For years, I've known there was something wrong with my vision. I just didn't know what it was.

About a year ago, I started working with the Idaho Commission for the Blind. I met them through services for Abi, but when Shane found out about my eyesight problems, he asked me if I'd like to also pursue assistance for myself. Since I have never been diagnosed as legally blind, I was skeptical.

It turned out that although I'm not legally blind, I do have significant functional vision impairment.I've written before about receiving accessible reading material through BARD, which has been a blessing.

Along the way, when Shane heard about my vision symptoms, he said, "That sounds like it could be Irlen Syndrome."

Huh?

Of course, I started researching. In a nutshell, Irlen Syndrome is a profound sensitivity to certain wavelengths of light that cause the brain to become overstimulated. This leads to different effects in different people, but common symptoms include a lack of depth perception, difficulty or fatigue when reading, a misperception of motion, trouble with faces, headaches and visual stress. Sound familiar? Well, it felt like someone was looking inside my brain for the first time.

On March 14, our family drove to Spokane where Little Mister and I were scheduled to be screened for Irlen syndrome.

He was determined to have a possible or mild case; I was diagnosed with a severe case.

No surprise there.



The main treatment is colored lenses that block the wavelength of light that causes the most problems. They also use colored overlays on reading material. Different colors help different people. I spent hours going through combinations of colored lenses and reading charts, papers and samples, as well as looking outdoors at distance objects, depth and light.

At this point, I'm still a bit of a skeptic. I've been to so many different eye doctors and had so many different lenses prescribed that I'm reluctant to get my hopes up for much improvement. Still, this time, the questions were different. "Does the text move or shake on the page? Do walls or objects sometimes seem to loom toward you? Is it hard to sort out what you're actually seeing?" Well, yeah. But I've never admitted these to anyone for fear of being called crazy. "Does this color improve your perception of depth when looking at a staircase?" Surprisingly, yes, it does! Instead of the stairs looking flat, like a photograph, they actually look as if they have dimension, and I don't have to feel with my toe to accurately locate the first one!

My glasses have been sent off  to a special lab in Seattle to be tinted. Weeks from now, when they come back, I'll start wearing the special color that has been chosen for me, and see if some of the visual chaos that I experience daily goes away.


This poster, (source) really first piqued my interest. While the cynic in me admits that everyone uses brain scans to legitimize their pseudo-scientific claims, this photo made so much sense merely in terms of what I experience. Overload. Too much info. Fatigue and disorientation constantly. Maybe it looks like a brain on overload, and maybe it doesn't, but it's the first time anyone has acknowledged my crazy symptoms and legitimized the idea that we really know so little about how the brain works that we may indeed miss a perceptual processing disorder like mine.

Another interesting facet of our evaluation was the tester asking me how I've managed in school when I could seldom see the board, often could not read the texts for extended periods, could not find faces or navigate stairs comfortably. When I described the ways that I developed an acute memory for aural input, honed my listening skills, grabbed info off the board on the way out of the classroom, etc, she seemed very impressed. For the first time, someone acknowledged how hard I have worked to achieve success, or how the daily amounts of stress I endure exceed what most people can imagine.

It was an odd feeling.

Hiding my struggles for twenty years, and then stumbling to try to explain them for the last three or four years has still never resulted in anyone understanding this in any sort of meaningful way.

Until yesterday.

I'm still processing what that means.

I guess I have a name for one more piece of the puzzle.

Sunday, March 9, 2014

Eyob

(Popping in despite the Lenten hiatus to post a few important pictures.)

In spite of still having colds, we drove to Spokane this morning to meet Eyob. He is the Ethiopian director of Kingdom Vision International, where Abi lived before she came home. She was delighted to meet him again, and he remembered her. :)

We also made a connection with two other KVI families who live in Spokane. 





After that, we went to Old European for my birthday. :)



Monday, March 3, 2014

Lent 2014

I'm going offline this year for Lent (so no blog, FB, Twitter, feed reader and limited email). So tomorrow I'll say goodbye until Easter. :)




(Unrelated, gratuitous Bean pics.)

Popularity and Choosing a New Blog Template

This morning, I went looking for a new template for my blog. I wanted something minimalist and trendy, something with cute graphics that look like stitching. I was beginning to feel dated and that is death to a blog, right? I fear I'm falling off the social ladder in the world of mom blogs.

Seriously, sometimes the arena of mom blogs reminds me of a high school popularity contest.

You remember, I'm sure. At the top of the ladder was the girl whose parents had lots of money and lived in a big house in the part of town that boasted the clean swimming pool. She always had the brand-name clothes, the right hair (for me in the early nineties, that meant a spiral perm) and the right friends. Her parents threw lavish birthday parties, and she led every major school club and committee. Heads turned as she passed in the hallway at school, and everyone knew her locker number.

On the second rung were the "right friends." A small, elite circle, these girls weren't the very top but they were close enough. They hung out in tight bands and laughed loudly at the inside jokes that nobody but they knew. They organized prom. They had cute boyfriends with whom they publicly flirted, and they vied for homecoming court. They showed the whites of their eyes to anyone trying to enter their circles.

Then, there were the rest of us. In a big school like mine, you could organize yourselves into the band geeks, the theater nerds, or the jocks to try to scrape together an identity. Sometimes, like me, you felt completely invisible as you walked down the hallways of the school.

Now, we don't have high school; we have mom blogs. At the top is Pioneer Woman with her book deals and her appearances on the View. Next, there are blogs like Jen Hatmaker, Vitafamiliae or Rage Against the Minivan. Instead of the right hair and clothes, they have to use purchased domain names, templates costing thousands to design (made by "my good friend so-and-so") and photos from pro photographers. It's important to have a large, crazy family, to homeschool or work from home, and it helps to have adopted transracially. They measure success in pageviews and ad revenue. They write witty, self-deprecating guest posts for each other about how we need to go easy on ourselves as moms and what peanut butter looks like when smeared on the walls. Their photos show lavish birthday parties lighted with hundreds of tea candles. They attend BlogHer conferences.

Then, there are the rest of us. The bloggers using free templates that haven't changed since 2004. The ones who post five posts using the last 48 photos taken on our iPhones and then don't post again for three months. The ones whose birthday parties involve getting a balloon at the Dollar Tree.

I've been having quite a few internal conversations with God about this issue. They range from "Why, God? Why can I never make it? Why do I have to scrape for grocery money when I could have a few viral posts and make a couple of hundred dollars? I have a trendy transracial adoption, you know, God. I have a special needs kid too. That helps. I can write witty posts if I bother to try. Why not me, God?"

Then I swing to thinking that the last thing I need in my busy life is fame! I wonder if it's just reactionary, since everybody likes fame, right? Everyone wants to come across Facebook posts sharing a blog post and commenting, "Oh, I love her blog!" But I get to thinking, do I really want to work that hard? Do I want to come up with "content" for my blog in order to maintain a crazy high stat count? Do I want to deal with the negative comments and criticism that inevitably comes with media attention? Do I want to worry about keeping up with the trends of a fast-changing internet social elite?

No. In a word.

I used to tell myself in high school that I probably could be popular if I really wanted to. Maybe. But who wants to work that hard? I'd take the moral high road in my mind and call the popular girls petty. After all, I was raising my little sister, a noble work indeed.

In moments of despondency, I knew I probably couldn't be popular even if I tried, and why try only to fail? It was hard enough work just to be average, with an unnoticed eye condition, a family life that was difficult at best and a determination to get good grades and escape to college.

In blogger-land, I find myself reacting in a similar style. I have a lot to do without playing the blog popularity games. I don't blog in order to save other disabled people from utter despair. I don't blog in order to beat the other mom bloggers in page-hit numbers. Last year, I made two cents in ad revenue.

Gently, as He does, God started speaking to my heart. He has given me a glorious vocation; even if I still feel invisible, He sees me. Even if only a few friends read my blog; even if I get no comments, my blog is a record of that occupation, that calling. I write for me, because I want to record these precious, beautiful days. I share it because I have read other blogs that I find encouraging or delightful or insightful, and I want to be friends with other moms out there who walk a parallel road.

Will I ever be the popular mom blogger? Doubtful, and I'm actually totally okay with that. I'm learning that I'm not invisible, but neither do I need to resent those higher on the social ladder than myself. I am loved, and I matter, if only to a meaningful few.

Lately, I've taken this beautiful verse about contentment as my own:

Psalm 16:5-6 (NIV)
5 Lord, you alone are my portion and my cup;
you make my lot secure.
6 The boundary lines have fallen for me in pleasant places;
surely I have a delightful inheritance.

I decided to leave my blog template the way it is, because it makes me happy when I log into my blog and see it. :)