Some days are better than others. Today was a bad one. When I woke up this morning, I went downstairs to help my father with something on his computer. The lights were turned on, the TV was turned on, the computer was full brightness, and my eyes were not prepared. Typical morning, I often help my father with his computer, work typing, anything to do with technology. This morning it was like ice picks to my eyes and my brain. I immediately told my father, “I can’t do this.” I went upstairs and cried. Like boo-hoo ball cried. I hate that and crying makes it worse!
About 15 minutes later, I calmed down enough to go wake up my daughter and ask her to go help her grandpa this morning. Then I sat in my dark bedroom, hoping my eyes would adjust while drinking my coffee. My schedule this week has been slow, but I had a regular appointment this morning. On the way to work, I realized even though it is a very cloudy, muggy day in Columbus, my eyes were still super painful. So on today’s cloudy day, I wore sunglasses to drive to work. Vampire, the sun would have burnt my eyes to a crisp. One of the benefits of being a massage therapist is that my treatment room is dark, and I don’t have to focus my eyes on anything in detail. Even in the dim light, it just seemed really, really bright to my eyes and painful.
After I got home, I put in my eye drops and laid in bed, listening to an audiobook with a sweater covering my eyes. I normally love my room because it lets in a lot of sunlight and it’s wonderful for my plants and growing things. Not today. Today I laid in bed and prayed for the sun to set, which is just now setting. I’ve been wanting to read a book called Ginger Kid by Steve Hofstetter. I had bought Audible earlier this week because my brain needs constant input, and my eye limitations are increasing. I’m a reader. I read everything all the time. I read for enjoyment. I read for research. I read for studies. Audiobooks really aren’t my thing, but Steve Hofstetter is a comedian who I follow on social media. I really enjoy his stuff, and he voices the audiobook he wrote. I could only handle about 3 hours before my focus couldn’t listen anymore. I’m a reader; listening isn’t my thing. I tried to dose off for about 2 hours before I just couldn’t stay in bed anymore.
I also took a picture of my eyes for my next doctors’ appointment. One of the struggles has been that some days are good and some are not. Yesterday was mild. Below is today:
After the emotional rollercoaster today, I lay there trying to figure out how I can be productive. I said it yesterday, adaptability. We have to be able to adapt, learn our limits, and grow in new ways. This evening, as the sunset and my eyes, are cooling off from the pain of brightness, I’m sitting with my dim computer and learning how to use the voice type feature on Windows. I still have grad school work to do. I still plan on writing a book. I still plan on continuing this blog even if I have to find ways to do so. Organizing my thoughts through speech is a lot harder for me than writing or texting. I’m very much a verbal, word thinker. But there is a disconnect between my brain and my mouth. I guess my new challenge is learning how to express myself through speech and using my voice. Speaking through or to technology has always just seemed weird to me. Awkward. I don’t like leaving voicemails. I’m not really a big phone talker. But through all challenges, we must learn how to grow, right?
We all know Facebook giants are stalkers. They tend to show us ads and videos and all kinds of things about things we look up and research and look for. Well, as I’ve searched for different vision issues and Covid related things and decreasing vision, one of the videos that popped up was by a woman named Molly Burke. Nothing to do with Covid. She is a woman who has a rare eye disease, who lost her vision as a teenager. She advocates for people who are blind or visually impaired and posts educational videos on social media. One of the first videos that I saw was of Molly and her mom explaining the difference between a medical model and a social model of disability. Click here for the video. Sometimes this theory is the medical and wellness model researched and used with people who have disabilities or chronic illnesses. As a psych major, I’ve studied this too. Instead of focusing on using technology, accommodations, or assistance to improve the quality and productivity of life (social or wellness model), the medical model focuses solely on cures and fixing the broken, sometimes at the cost of the mental health of the patient.
My kids are another big part of what gets me through everything. After they got back from Taekwondo this evening, they each came to visit my dark cave. I’ve got a little candlelit across the room and my computer set on the dimmest setting. When my daughter came in, I said. “this is it. This is all the lighting my eyes can handle without pain. I’m a vampire!” “Well, mom, you do have a mood!” “I have a mood?” “Yes. It’s a creepy mood, but you definitely have a mood.” Laughter really is the best medicine.
My conversation with my son when a little bit differently. I am always very careful before talking about or telling people anything that my kids struggle with before I get their permission. I asked my almost 13-year-old today if I could add this into my blog before I finished tonight. My son was born with a lazy left eye. We tried the patches when he was younger. I’ve attempted to get him to wear glasses since about the age of four, but he’s resisted. Meaning they’ve been ‘lost’, broken, disappeared, and somehow ended up under my car tire. I still don’t know if it was intentional or an accident? We’ve been to quite a few eye doctors and even been to the children’s ophthalmologist. On exams and pictures of his eye, it shows that the optic nerve isn’t quite firing to connect to his brain and interpret what he sees. That’s typically what ‘lazy eye’ does. I’ve always suspected that he can see better than anyone has ever given him credit for. One of his major challenges is admitting that his partial visual impairment can prevent him from doing some things or cause him to struggle more. By appearances, unless you’re really looking for the lazy eye or my son is really tired, you can’t tell. Aside from the patch therapy, the only other option that was given to me for treatment was possible cosmetic surgery. While the surgery would straighten out the eye, it wouldn’t help his vision at all. I made the decision when he was little that if he chose to do that surgery later in life when he was older, that was his choice.
Blessings are everywhere. You just have to look. Over this past year, since I’ve had to start wearing glasses and have had increasing vision problems, one good thing has come out of it. My son has opened up and started talking to me more about his vision. And has worn his glasses more, but that’s still a work in progress. This evening he asked me about my next doctors’ appointment, which is next Tuesday, the cornea specialist. I explained that I didn’t really think that will help, but I did get the referral to the neurologist, which is who I’ll be calling first thing tomorrow morning. He asked why I thought that. I explained that even when I was resting my eyes today and had them covered and just trying to relax that both of them kept twitching. Almost like I can’t stop them from shaking. I explain how my eyes have been examined and how they take the picture inside the eye that shows the optic nerve. I explain how it’s not always the visual acuity but the functioning of my eyes, which is what leads me to believe it’s the nerves. That everyone says my eyes and my optic nerve are healthy. And that I could explain how. His eye issues work if he wanted to know.
He turned around and sat down, “Really?” I explained yes that I could explain it to him. As that’s what I do, I research, and I study things I need to know. I’ve known he had vision issues since he was about 2. So we sat and talked, and I talked about the anatomy of the eye and how the optic nerve doesn’t fully fire and function. He told me about how he gets cluster headaches around his eye when he’s stressing or trying to focus it. While we’ve talked about his eye issues before and almost everything I’ve said tonight he’s heard before, it was the first time he really showed interest.
My son has heard doctors say that after the age of nine or 11, the optic nerve in a lazy eye won’t grow. That if he doesn’t use patch therapy and use the eye, his vision won’t get better. The last eye doctor, my son, saw didn’t believe he could see or focus the eye at all. This evening my son told me that sometimes when he’s watching something or playing his game, he’ll practice using his left eye. Explain that while normally this is the case, every human is different, everybody reacts differently. I told him that I believed if he worked up to using the eye for an hour or two hours a day that he would be able to improve his functioning of that eye. My son is superhuman, after all, much like his grandpa.
It’s a weird karmic universe. It always seems that my most significant challenges turn out to be lessons that I can use to help my children. Even if that means sitting in a dark room with a dim laptop, showing your visually impaired son how to use voice typing features on windows. While the online school has helped us create a 504 plan and features that read-aloud text for my son’s schoolwork, no one has shown us a way to go the opposite. This little voice typing feature, which is allowed me to write my blog without seeing too much today (minus editing), may have just made my son’s education journey much more accessible.
Some days you have to find the light.
Wishing you all many blessings, good health, and love from my dark cave,