I like math and comparisons. Meaning is gained through comparison. We decide how successful, how smart, how wealthy and how healthy people are by comparison. It’s important to know where I fit in the world. I still remember the first time I read A Portrait of the Artist as a Young Man by James Joyce and came across the part where “[h]e turned to the flyleaf of the geography and read what he had written there: himself, his name and where he was.
Class of Elements
Clongowes Wood College
It was one of those moments where something just made sense to me, not because I intellectually understood the meaning of the text, but because I understood. I got it. I had that feeling that this I really get. It’s one of my favourite books and I can quote it for hours, but every second paragraph has a bit that I like so I won’t. I’ll leave it at I’m a big fan of a good bildungsroman and antiheroes are appealing.
Some things are easy to discern. I can write down my address on a piece of paper and know where I am. But when it comes to health and illness, I’m lost. I don’t have a fixed disability, like being blind or deaf that is the same day in and out. I don’t have a progressive illness like MS or a life-threatening condition like Cystic Fibrosis. I’m never sure where I fit in. Unwellness is such a heterogenous thing that it is difficult to make comparisons. I object to the sentiment of “I am sicker than you are”, but I still need to know. I guess I need to know so that I know how much slack to cut myself. Its easy to feel lazy.
I’ve had a fever since yesterday. Chris worries. I say its just a sore throat. Chris says okay. I throw up blood when I try to eat anything. Chris strokes my back and goes to the store to buy more Coke which usually helps. I spend the evening under blankets on the couch. Chris raids and checks on me every five minutes. I get up to get another bottle of water from the kitchen and faint, hitting my head against the cupboard. Chris stops raiding. We go to bed early and I build a pillow mountain. I can’t breathe without the mountain. Chris sleeps and I listen to Honor Harrington on audio book whilst I think about staying calm and not panicking. Calm is good. Chris gets up at six. I try to get more sleep. He makes sure I’m warm and dressed and goes to work. I nap on the couch with a snuggly cat. Coughing hurts my head. I’ve been coughing up blood since Saturday, so I can’t blame that on the infection. I’m not worried. I wonder if I should be. I decide that not being upset is the correct response. Nothing unusual is happening. This is my life and this is a pretty normal physical reaction to a bug. For me. There’s a reason why my doctor makes me get a flu jab in the winter. I’ll worry when if it gets worse.
If you’re always sick, it’s easy to just be sick and leave it at that. It’s even easier to start thinking of it as normal and to try to keep doing the things you feel you should be doing. The things you want to do. I picked up the water jug in the kitchen yesterday and Chris says “what are you doing??!” and I look at him, look at my hand, look at my dislocated wrist and think ‘oops’. Shouldn’t have done that. But it’s so easy to do. I’m tired and not sleeping leaves me with a mental short circuit. Other people put the kettle in the fridge and the milk in the oven. I forget to put oven mits on before touching a hot baking tray and forget to pay attention to the blistered burn on my hand. Oops again. Pain has long since stopped being a warning sign, its background noise. Or more like the extremely loud music in a club and I happen to be there 24/7 trying to carry on a civilized conversation.
I dislike being sick. I dislike doctors and hospitals even more when I’m sick sick and not just sick. I avoid it all as much as possible. I should go in to check if we can change my inhaler as the current one is dislocating my wrist. I should go in to check if I need to up my asthma medication as requiring an adrenaline shot once ever coupled of weeks is not ideal. I should pick up the headache prescription. I should get the whole bleeding thing checked out again. But I don’t. I’m tired of trying to explain. I’m tired of doctors and their opinions and their often wrong deductions and conclusions. EDS with its odd symptoms and weird complications is just, on some days, unexplainable. I think about being sick a lot when I’m sick sick with the fever and everything. I think that I’m less unwell than I think I am. Chris thinks I’m more unwell than I think I am. He makes me promise to stay on the couch. We agree to disagree, but I wonder. I want to compare but there is nothing to compare to. Nothing works the way it should and so I read James Joyce instead
Sitting in the study hall he opened the lid of his desk and changed the
number pasted up inside from seventy-seven to seventy-six. But the
Christmas vacation was very far away: but one time it would come
because the earth moved round always.
I think about that, the earth that moves round always and I try not to think about time standing still as it isn’t. The earth moved round. Always.