...a beautifully volatile and disabled existence of raw humanity, art and activism...
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Everyday Writings

eyes are important

26 May, 2020

Yesterday, when I went to bed, I found myself randomly crying at nothing - well, it should be nothing. I was thinking about my appointment at the eye clinic that morning, and how the cornea specialist was reasonably patient, explained what needed to be explained, and was quite nice. Not overly nice, not overly smiley, not overly reassuring – in essence, she was not overly anything. She had a notably kind manner, but it was also notably ordinary.

I have sat in a lot of doctors’ offices in my time by myself. I pretty much know how most of the (good) appointments go, how the doctor will behave. Initially, they will talk to me tentatively, with a subtle emphasis on gesturing and scanning my face to see if I’m understanding. When I perceive this, I will immediately tell them that I can hear. They will look relieved and sheepishly say something like “Oh! Thanks for telling me. I didn’t realise…”. I will smile and reassure them that it’s okay, that most people assume I am deaf, and that I’m used to it. When they carry on speaking, it will be in a more relaxed tone, but usually (subconsciously) overly simplifying what they say. When I ask questions, I will naturally choose more sophisticated words, attempting to be witty. I deliberately won’t ask anything simple that I can google and won’t use the word-predictions on my Lightwriter though. I want the doctor to actually see that I am physically typing the words on the screen, not be amazed at the device I’m using. I want them to see I am relatively literate and comprehending what’s going on.

They will gradually become more confident and chatty during the appointment, and look at me with overly-wide eyes. While they are writing me a script or something, they will usually comment with amazement on my independence and ask if I live with family or in a group home. I will explain that I live with my dog, but I see my parents quite often. I will laugh and inform them that I just am there alone, because none of my support people could come at such short notice and then throw in something mundane, like how I need to go grocery shopping, or get home to Sophie. I guess these things are just to, I don’t know, convey that my life isn’t about overcoming anything special, nor is it about me being wilfully independent. It is boring and exhausting in ordinary ways, and it’s not amazing or courageous that I’m sitting alone in their office. I will walk away and say my appointment was very pleasant and describe the doctor as being nice and not condescending at all.

This description could lead you to believe that everything I say and do is thought out, and that I am over generalising. I have experienced a variety of scenarios similar to this one over the years. I do these things almost reflexively, and I guess they have become merely facets of how I relate to people. I dislike small talk, but I am good at it. I am good at it because it’s a way I can try to keep myself safe and be treated with some measure of dignity. I am sensitive and hypervigilant to situations, but like for my communication, I have developed a patience, awareness and understanding of people’s ignorance, and I am especially patient if they are trying their best.

An interesting biproduct of my months of self-isolation is that I have been more affected by the way random people talk to me, granted it only has been brief exchanges with about three people. I’m patient and polite, and of course feel that most people try their best with the knowledge they have. I just notice I have been angrier and more despondent with society, and that somehow translates to doubting my worth. Who I am, and the relationships in my life periodically get distorted. I’m pretty content and comfortable in myself, in my life, in my body, but there’s moments, where my mind gets lost for a bit and starts to second-guess everything. I am suddenly, absurdly, the only cause of people’s distance from my life, because I may not be as worthwhile as others (lol, self-centred much? Painfully human much?).

I guess that’s why this eye specialist elicited tears. Even before I had sat down, she said “Now, you can hear everything, can’t you? You just can’t speak, is that right?”. Although she had some forewarning because she had briefly seen my eye on Friday to give a second opinion, I was just so appreciative of the upfrontness. I almost thanked her for asking, but the conversation moved on too quickly. My “amazing” Lightwriter didn’t even rate a mention, she just wanted to know about my vision, whether I was in less pain and how the treatment regime was going.

I noticed that I didn’t feel the need to prove my credibility or understanding, but I can’t pinpoint why. Maybe because I felt she spoke to me like she would anyone else, or maybe it was the fact that she was focused on my eye issue, and didn’t show any unease with talking to me (even though she might have felt it). She listened to all my questions and explained the wound healing process in depth, and why it would be a lifelong issue. When I said it was fiddly putting the drops in, she said as long as I didn’t poke my eye and it went in anywhere, it was fine. Then when prescribing me another medication, she tested the dispensing mechanism one-handed, before handing it to me to try.

After that, she wanted to ensure I could easily contact them if I was in pain and couldn’t see properly. I said I could get someone to call (once I managed to call someone), but she said she’d see what the options are. She explained to a receptionist my non-speaking thing and said I need a way to contact them if I urgently need to come in. They gave me their email. The specialist ensured that that email is checked frequently. She said it’s important that I get a reply promptly because I would be in a lot of pain.

Why can’t everyone be like this? It can be so simple.

The world could be a whole lot easier and less effortful to engage with!

Georgia Cranko