perspective

(Note: this is not going to be a linear or chronological narrative. I will be jumping around a lot).

My feelings about my experiences with strabismus are varied and complex. There was and is a certain amount of why me: like, really, I already have red hair, and as a child, I was extremely small for my age, and as an introvert, I would really rather just blend into the crowd. I also went through a period, mainly while I was in therapy actively addressing the issue, of grieving what I felt I had lost as a result of growing up with a misaligned eye.

It’s uncomfortable for me to admit this because it’s not an emotion I’m very comfortable with to begin with, but I also had and have some feelings of anger. I’m angry that the pre-Columbine culture pretty much never even addressed the issue of bullying. I’m angry that treatment for strabismus–which is a relatively common problem affecting 3 percent of the population–is still experimental in many ways. I’m angry that I don’t have a time machine.

Wait, what?

It’s here that I want to interject that I actually tried to find a therapist to help me with my “eye issues” at a relatively young age. I was 17. Unfortunately, the one I found wasn’t really equipped to help me with the issue, and neither was the second. The first two I saw more or less addressed the issue by trying to reassure me that my misaligned eye was not as noticeable as I thought. I am really glad I decided to try therapy one more time because the third one really was able to help. We didn’t even address the whole “it’s not as noticeable as you think” thing for several sessions. If you have strabismus and have tried seeking out psychotherapy but found it unhelpful, it may very well be that it was just a mismatch between therapist and client.

When I would talk about feeling angry in therapy, my therapist liked to point out that words like “angry” and “mad” are directional emotions, meaning they are feelings directed at someone or something. Who or what was I angry with?

Truthfully, although it’s hard for me to write this because I now realize how misguided I was, I was mad at my parents and some of the doctors who had treated me over the years. I felt some aspects of my strabismus were mishandled.

This is where the issue of perspective comes in.

My therapist gently pointed out that this was the early ’80s we were talking about here. Not only was it the early ’80s, it was the early ’80s in rural Ohio. There was no Internet. Information was simply not as accessible back then. Reasonably, what could I really have expected my parents to know? They already knew way more than the average parents would have known, simply by virtue of the fact that my mother is both strabismic and amblyopic herself. My parents got me care much earlier than many people do. They took me to see an ophthalmologist. My mother, in particular, was very involved in the day-to-day aspects of the condition: she took me to the eye doctor, she made sure I wore my patch, etc. The staff and the eye doctor I saw were essentially kind people who did their best by me. They would pretend to put put eye drops in my stuffed animals first, or put an eye patch on my Cabbage Patch or whatever.

There have also been some important gains in the treatment of strabismus since the early ’80s, and rightfully so. One of them is that children now wear a patch for three hours a day. Back then, you had to wear a patch all of the time. It wasn’t fully realized that while patching full time promotes vision in the weaker eye, it also prevents the two eyes from ever learning to work together. As a result of the way my amblyopia was treated, the vision in my weaker eye is a lot better than many other amblyopes of my age. But my eyes don’t work together at all; I’m only capable of using one or the other.

After my first two surgeries, it was a joint decision between my parents and my first eye surgeon that they would leave the decision to pursue future corrective surgery up to me. I was also angry about this, but we are talking about what is essentially an elective surgery. Nothing medically catastrophic was going to happen if I had never chosen to pursue any more surgery. They were my eyes, after all, and I can see now that they were trying to give me some autonomy.

In short: nothing short of having a time machine would have resolved any of these issues. There is no way I can go back to 1984 and make it so people then had the knowledge we have today. All I can do is use the knowledge I have now to help others. I am really glad I have gained some much needed perspective and that I have been able to let go of some of this anger.

In my late teenage years and now into adulthood, my care has mainly been through pediatric opthalmologists. They are the ones who have the best knowledge to help people–even adults–with strabismus. I’m not going to get into the vision therapy issue right now, but I will say that today, I do also see an optometrist who specializes in binocular vision disorders. Overall, I would say a combination of care is probably the best approach, and it is the one I choose to use personally. A bonus of seeing a pediatric ophthalmologist is you usually get to do something like watch Toy Story 2 or try to focus your eyes on a picture of a duckie. I take any opportunity to develop a more lighthearted perspective that I can get.

My struggles with strabismus have been very difficult for my mom. It’s always hard for a mother to know one of her children is suffering. But it was even harder for her, with her own intimate knowledge and experiences with strabismus. She did advocate for me and wanted me to have self-esteem. She felt it was important that I viewed having glasses as a normal thing, so she got me a Cabbage Patch doll with glasses. She took me to have Marc Brown sign my copy of Arthur’s Eyes. She has told me that she never really worried about my eyes because she was just happy to have a little girl. My mother is essentially a very practical person who is not as prone to analyzing things like I am.

She did the best thing any mother could do. She accepted and celebrated me for who I was.