In several ways, my mother was “good” about strabismus: she noticed the problem (which seems to be VERY recessive in her family) when I was very young, insisted that I be treated by respected ophthalmologists, and, although she tends toward frugality, never balked about buying quality glasses from good opticians. (If you have strabismus and something is a national chain, whether optical or otherwise, don’t buy glasses from it. . .but that’s another story.)

In one respect, my mother was “bad” about strabismus: I don’t remember a time in my life when I was NOT self-conscious about photography. Told multiple times that we should care more about how our bodies work than how we look, I was also sometimes instructed to “look to the side” for pictures. With or without a reminder, I NEVER forgot.

After my strabismus seriously reversed during my senior year in high school, I cursed myself for not having had senior pictures taken sooner: eventually, during a quick, cut-rate session, I had one pose taken. . .looking down.

During my last year of high school and in college, I naively thought that if I ignored my strabismus, other people would too. I dressed somewhat flamboyantly in thrift-shop finds, in part because I liked them, but also so I could pretend people were staring at my clothes, not my eyes. Reality bit and drew blood one day at my part-time job (market research interviewing, where I could work unseen) when I learned that a co-worker had described me as the “cross-eyed girl.” (No, really, I’m the outspoken poet WOMAN who likes fashion hats and long scarves!)

In part because I felt ugly, I didn’t date until I was 21. The few boyfriends I had always loved me more for my mind than my body; one benefit of having an appearance impairment is that I didn’t attract “jerks” who only cared about looks (and sex). Well past 30, I eventually married a longtime boyfriend who, by the way, has BEAUTIFUL eyes.

I admit that I would be no beauty even without strabmismus, and I’m not generally shallow, but I FELT shallow for caring about my appearance until I was in my early twenties and read “Beauty: When the Other Dancer is the Self” by author Alice Walker: A childhood injury left Walker totally blind in one eye, and she STILL cared more about how she looked than how she could see:

http://www.wsu.edu/~hughesc/alice-walker.htm

In my late twenties, I volunteered at a children’s orthopedic hospital. One of the patients, a boy about seven years old whom I thought I’d befriended, asked me if I was “cross-eyed” and requested that I not make eye contact with him. Considering that he was in a body cast after major surgery and was certainly much more “disabled” than me, I was taken aback: yes, he needed a wheelchair, but (in his mind) was still good-looking. I was UGLY. (Ironically, one of the reasons I felt I was a good volunteer was precisely because of my strabismus experiences: I knew not to be condescending to the children or treat them like “freaks.”)

One of the hardest things about having strabismus is that we are among the (nearly) hidden disabled and can sometimes “pass.” Unlike amputees, those who use wheelchairs, or the blind who have canes or guide dogs, we are not obviously impaired from a distance. We may look reasonably “normal” on some days, and not on others. Even when people notice, most think strabismus is primarily a cosmetic problem rather than a functional one. I myself believed this until I had a severe reversal at age 18, only because no one had ever told me otherwise. Yes, I was bad at “ball” sports and flunked the road test in driver’s ed (I learned in my late 30s that I also have difficulty with sensory integration), but I was also a voracious reader and fairly good at visual arts.

Two of my great-uncles were private pilots, and one of my uncles was a WWII co-pilot. I, too, have always loved being AGL (above ground level). I knew from the time I was young that I couldn’t be a professional pilot, but will always regret that, due to strabismus and other brain-based disabilities, I cannot even be a private pilot. Despite knowing I couldn’t fulfill the dream, I took two closed-cockpit (general aviation) and some open-cockpit (ultralight) lessons “for the experience,” and, in the sky, felt completely at home. For me, not being able to fly is like having an amputated soul.

I am a Unitarian Universalist and do not believe in a “puppeteer” God or that “everything happens for a reason,” however, one could say that I work to give my strabismus meaning. Maybe without it I’d be shallow and vain, perhaps even unkind.

At age 24, after my second surgery, I was grateful that I no longer had chronic diplopia, even though I still experienced it using near vision and needed heavy prism correction. At age 38, after my third surgery, I became very grateful when, much to the postoperative surprise of myself and my ophthalmologist, I no longer had any diplopia and didn’t need prism correction at all. I will always regret having strabismus, but I also know that there are greater disabilities, and that it may have given me some wisdom.

Always remember: What matters most is not how we look, but what we SEE.

Good luck Emma.
Paul

Also, people document their recoveries on Youtube- it doesn’t look too bad a few days into recovery.

http://www.childrenshospital.org/clinicalservices/Site1763/mainpageS1763P4.html