Why Being Interesting Isn’t Always so Great.

I went to the eye doctor this week. It’s been quite some time since I’ve been and my current contacts (hard lenses) are about two years too old.

I’ve never been to this doctor before. So, I was prepared for the onslaught of questions about my medical history. It’s never easy having to recount all of that. Of course, I didn’t have to go through every detail. It was focused on my vision. Still, that’s heavy enough.

I was hopeful going in because all of my friends and family spoke endlessly about the strides they have made in the medical field and how surely, I’d be able to be fitted with contacts that could change my vision dramatically. I shouldn’t have let myself get so hopeful. Because my vision is worse than I thought and correction beyond the status quo isn’t possible.

eyechartCorrected, I can barely read the second line of the vision chart. I have nearly no peripheral vision in my left eye. I wasn’t really prepared for either of those things. I knew things were getting worse. I guess I was just in denial about how bad my vision actually is.

Part of that stems from everyone around me trying to be helpful. Sometimes I think my loved ones believe they can talk my eyeballs out of going blind or coax my mitochondria into functioning properly. I do believe that the mind is a critical tool in healing the body. But sometimes, you just need to face reality.

My mother has never been one to let her children face reality. When my brothers and I were born the doctors all told her we’d never walk up and down stairs. I’ve mentioned that before on this blog. I was reminded of it during my visit this week. The doctor asked me if I could navigate stairs and was incredibly surprised when I said that I could. Of course, it’s not always easy, but that’s why there are railings. My brothers and I have all learned to adapt and work with what we have. Part of that is because my mother never told us that there were things we could not do. She believed in our ability to adapt.

But what we have is still not what most people have and it is still painful. Of course, I am grateful that I can see colors. I am grateful that I know what a flower looks like and that my vision can be corrected so that I can at least see the faces of those closest to me (double meaning!). I’m grateful that the doctor who, at 14, told me I would be completely blind by the time I was 30, was wrong.

But I went into this doctor’s appointment with hope. With hope that I wouldn’t have to put my face on top of my computer screen or blow up the magnification so much that it makes navigating a program difficult.

My hopes were dashed though and reality set in.

As I was coming to terms with reality, the doctor was asking me questions. They were legitimate questions related to what he was doing. He wasn’t prying. But it was still painful to recount my faults. That’s what they are. They are faults. I am faulty.

And as I’m answering his questions he exclaims: “This is so interesting!”

And I’m just sitting there. Being blind.

But apparently, I’m interesting.

I don’t think it’s possible for my brothers and I to quantify how many times we’ve been told we’re interesting. But we’re not interesting as people. We’re interesting as specimens.

This doctor didn’t mean to dehumanize me, but he did. People always ask why I don’t go to the doctor more frequently. Why I hesitate to trust them. This is why. I’m not alone in this, my brothers have the same experiences. Going to the doctor is an exercise in dehumanization for us.

We’re told that we’re interesting and fascinating but at the same time, we’re also being told that our bodies are faulty and there is no way to fix it. There is no road map. There is no answer.  Very few doctors have ever left us the space to mourn those facts.

None of us want to spend days crying over our lot in life but we need a few seconds to deal and to be seen as humans. Somehow, doctors never see us as human. We’re just fascinating non-people.

blindfold

Writing these rebel body blogs is just my way of saying that I’m more than a faulty body. More than a rare disease. I have thoughts and emotions. Anyone would be emotional about going blind. It doesn’t matter that you’ve known it’s inevitable for decades. It doesn’t actually get easier. No one actually likes the idea of losing more of their independence.

That’s not interesting. That’s horrible.

So while the doctor goes away fascinated by my disorder, I go away having to live with it. There isn’t really time to dwell on the facts of my blindness. I have to be practical.

The doctor was surprised that I don’t wear regular sunglasses all of the time. He told me that by the look of my eyes, he thought I would need them. As it is now, I just wear lightly tinted glasses when under harsh light or staring at the computer. But I suppose I should move to wearing them at all times now.

I’m not ready to take the leap to full on sunglasses yet. I don’t think it’s necessary but who knows? Maybe I’d have fewer migraines if I did.

But I do need to do a few things that I’ve been neglecting. I need to look into disability services and see what options are out there for me. I did this in high school and college but have stayed away from it since. I’ve never wanted to be labeled as ‘disabled.’ I’d rather ignore it than deal with it. But, I realize that many of these services can help me retain some independence, so it’s time to buck up and face reality.

At that reality, for me, is full of challenges with which most people never encounter. Challenges that to a doctor are fascinating and interesting but to me, a real person, are often frustrating and demoralizing.

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