the night-side of life

The world of illness is a different world. It is the night-side of life, a more onerous citizenship...Sooner or later each one of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

Susan Sontag

I read that quote in a book, and I agreed for the most part. I knew that this woman had felt that encompassing feeling of illness, which seems to leave you sitting on a park bench by yourself. Sometimes walking down the street I look at the people who pass by me, and I feel that I am different. A naive thought, considering that I have no idea of their health or suffering – but there is something about losing your physical strength which makes you feel different from human beings who have it. Being sick changes everything, or so it feels to me.

I think about my peers. Who voluntarily wake up the morning after with a hang over. I feel angry that they who have health would choose to intoxicate themselves for their own pleasure, and spend time recovering in bed, feeling ill - what a waste, I think, and I wish I could swap with them. “Here, you take my wretched body and abuse it if you wish, but yours is in good condition and I could use it much better than you.” I would do nearly anything to feel well. I wake up, feeling that I’ve been thoroughly inebriated, after an early night, and a conservative cup of peppermint tea. And if I have a piece of cake and stay up till 10pm, the pain is even worse.

Being sick has changed most things, most of the big things. What I do, what I think, who I relate to, what my dreams are.

Often I focus on the limitations of being unwell. I can’t go to university, I can’t go out at night, I can’t keep our house as clean as I’d like, I can’t help other people much, I can’t eat whatever I like, I can’t work, I can’t go out often, I can’t be superwoman, I can’t have a career, I can’t have a baby......

And all those ‘can’ts’ escalate into one big fat, “I can’t bare this life anymore.” Which is quite a depressed thing to say, really.

I do agree with that quote by Susan, that the world of illness is a different world. It’s a different world to the one I used to live in, but a lot of the most beautiful parts of the old world are in the new.

 Looking back over my life, the special times have not been when I was achieving something great, it’s been when I was feeling something great. I thought getting my AmusA would would be fufilling, but by the next day it was common, unsatisfying. I thought the success of doing well in my finals at school would feel great, but it was over so fast – the thrill lasts about 30 minutes. Getting into this school, that university, that final....Those physical/mental accomplishments just haven’t compared to the times I’ve felt alive, and enjoyed the sensations and emotions that come with humanity. I may not be able to enjoy getting good grades at uni, getting a job as a flautist, entertaining dinner guests or earning money, but I am alive and I can fully appreciate laughter, empathy, relief, satisfaction, creativity, inspiration, love, relationships.

The best times have been suffocating with laughter, squealing with excitement, feeling overwhelmed with love, crying with joy, playing music with emotion, feeling the coldness on my face on a winter’s day, smelling fresh bread, snuggling under the doona, kissing for the first time, embracing a friend, reading an exhilarating book. The simple things, the unforgettable precious things which can’t be put on a resume or hung on the wall.

I’m not deprived of being a human being. And while each day has become more onerous, and more painful, I’ve started to enjoy the simplicity of life instead of racing around doing ‘big’ things.