Different/Can’t/Shouldn’t/Won’t

I recently had the realization that I didn’t like my body growing up, but more specifically that I didn’t like it for a reason I didn’t understand until now. It wasn’t for being chubby, it wasn’t for having dark hair instead of blonde or another banal difference we hold ourselves against when we’re younger.

I’ve never written about this. I don’t know that I’ve even fully said it out loud, really. It usually just catches in my throat. So maybe writing is best after all. But when I was born, I had a couple problems going on. Some visual, and some auditory. The auditory was noticed when I wouldn’t respond to my name, or really to much of anything that was coming in sonically. So they put tubes in my ears and that helped out a lot. The doctors can still see the scarring immediately during checkups, but other than that I don’t notice much anymore. Maybe my vocal patterns would be different, but I’m not really sure.

But the visual problems were something a bit different. And those stuck. And they still hurt sometimes. At birth I had a congenital cataract in my right eye. It’s strange, I’m tearing up even writing this down. But anyways, they noticed the problem when I was a few days old. I would eventually have at least five surgeries before I was 6 months old.  And at that time (this was 1986) I fully believe that the doctors did the best that they could in that situation. That they thought what they were deciding was the right thing. And unfortunately for me, that meant all of those surgeries. Because after the initial procedure, because of how young I was, the impact of cuts and pressures and incisions on my body caused what I’ve come to call impact glaucoma. Or Secondary glaucoma. It’s in my right eye, and has been ever since. I’ve had it for 30 years.

When you look at my face, it’s not symmetrical. No one’s really is, but mine is definitely not. The surgeries caused one eye to look slightly different than the other. And the visual fields are quite different. It’s pretty hard to explain, and even my doctors don’t totally understand how my brain processes visual information. I go to Massachusetts Eye and Ear Infirmary in Boston. It’s considered the best institute in the entire country for anything related to the eyes, ears, nose and throat. And I still stump them sometimes- I’m not saying that in a proud way. But regardless, we just do the best we can. I’m always the youngest person in the waiting room, and my treatment has always been 60% active and 40% reactive in terms of knowing what will work and what won’t.

So why am I writing about this. And why write about it now. Because last October my doctors and I realized that all my drops I’ve been taking for eye pressure, and there have been many, are no longer working quite as well as we would have hoped. Even after all these surgeries and all these different medications. So my pressure is up in my right eye. If you don’t know the impact that can have, too high of intraocular pressure damages the optic nerve, which takes visual information to your brain. So obviously, that’s not a good thing. You cannot undo that damage. The eye in question has substantially worse vision that the other, so we’ve agreed that surgery didn’t need to be immediate. After I have it though I am not allowed to lift anything for at least a month, and life is going to be pretty interesting for a bit. So I’ve scheduled it for when I’m done teaching this spring. But we’re only saving so much vision due to decisions made when I was a child. That’s just the objective reality of it. To save what we can, though, is the goal of what I’ve now been advised to do. Which is to have yet another surgery, on May 8th.

And to be honest, it just makes me really sad sometimes.

So I thought a lot about it. And I’ve had really good days, and really bad days about it. And if you knew what was going on in the surgery, you’d understand why I’m a little bit scared of it as well. I’m not that bad with pain, but I’ll essentially be in a state of relative consciousness as someone operates on my eye. It’s not a fun scenario, I really wouldn’t wish it on anyone else. But on a level that’s not about physical pain, I realized that I’ve carried this around as such a weight- not the diagnosis of having glaucoma, but the moments when people look at my face and tell me in a way that’s disguised as asking that I’m different. ‘What’s wrong with your face.’ Not everyone does notice. When it was really affecting me growing up I used to count on my hands how many people we were up to who had “asked” me about my appearance. And those moments- primarily relocated to when I was little and kids were little and lacked tact- created this sort of gaping wound. I remember being such a shell about it when I was in grade school and middle school. Time as a healing element isn’t really true, it’s just scarring. There’s still a wound, it’s just calloused.

The memories are all still there. When I was little I’d get pulled out of class by visiting medical professionals I didn’t know with no warning or notice, and they’d take me out to ask me if I could see alright. Then I’d come back, and not really knowing what to say, have to honestly explain to inquiring classmates that “I don’t know” why I was separated again. I was a fascination to medical residents on one trip to a neuro ophthalmologist and it was fine until it wasn’t and I burst into tears because so many people wanted to look at me. Because I was different. I know these and other moments may sound inconsequential, or maybe overly sensitive. But when you’re little, when you’re a sensitive kid to begin with, when you’re a kid who wouldn’t even sleep in her crib because it had bars that look like hospital gurneys you’d get wheeled into surgeries on, these moments add up. And you carry them around like rocks. They affect you.

I never met anyone actually who had a similar physical scenario as me. Considering all the facts, to be blunt I do a pretty solid job. I played about five sports, jumped horses, I drive, and I work in the visual arts. So while I don’t complain of being in any way not able to “do things,” in moments when people would ask me about my eyes I had no gauge or other person to look to and feel better from- to look to their path for guidance. I had my shy self, and my difference and what developed into a sense of humor as more of a defense mechanism than anything else. Growing up I was so relieved that one of my siblings had six toes on one foot. That at least was something different and we could be different together. But eventually that was “fixed,” so to speak. I couldn’t “fix” myself… and I remember feeling genuine sadness the day I found out that now there were five on that foot. I know that’s not fair at all, but that’s how I felt.

I don’t really know if this makes sense or if I’m leading this anywhere that lands. But I guess what I’m trying to get out of my body is that this surgery for reasons I’m coming to terms with as an adult has made me feel scared and small again, and like I have no control over my body. And what may seem an inconsequential surgery to some is psychologically really trying for me. And I realized in thinking as an adult with adult thoughts that my child mind couldn’t process, that I was so unhappy partially because I was answering to people for a body someone else had altered. That I had no say in. And while at that time it was coming from a place considered to be medically advisable, it had consequences that you don’t understand when you’re small, but will need to answer for as you grow up. You will need to explain your body and how it works countless times to new doctors and new people. Some who have no business asking about you but do. You will find old polaroids of yourself on trips home, with someone else’s handwriting on the back detailing which surgery you had in that year. You will stumble across archived moments by accident in which you didn’t realize you were a subject of discussion concerning your development in the world. Your perception of memories will change. And you will have no guidebook on how someone should react to those moments. It’s interesting and it’s hard and at best it’s been a learning tool. At worst it’s been crippling.

It’s hard to have one foot in your childhood but the other in a doctor’s office for so much of your life. And to be consistently informed you’re different– that you can’t disregard your health and forget your drops, that you shouldn’t do certain things because they’re a danger to your vision, and you won’t ever fly a plane etc because you don’t see the world quite like you’re “supposed” to. To this day I have to correct people- family, friends, strangers and even some doctors I’ve met, about what I see and don’t see. What I will do and won’t do. And if anyone is listening in these moments, how I feel about those remarks and gestures. It takes away your autonomy all over again when someone informs you how you navigate the world because, I don’t know, maybe they read a book on Optics. Or because they know someone else who has had “visual issues.”

So if nothing else, I hope that other little kids who also have one foot into their childhood and one foot in the hospital, can read this or their parents can and know that this all matters. Using active, positive words instead of negatives matters. Doctor’s bedside manner matters. And asking rather than telling means the world and only takes a small tweak to sentences. And for me I guess, developed courage matters. Validating your own feelings and reactions matters. And being different in cases such as this can have the unexpected benefit of letting you see more than most in a lot of ways. Even if sometimes you feel like you’re carrying around all those rocks again. Because maybe, hopefully, one day you can put them down.

Maybe this will help.