It Gets Better, It Gets Worse

Content note: death, ableism, suicide, discussion of medical procedures, #inappropriatemortality. A continuation of the Talking To Myself series.

Sometimes I’m alright, and most of the time I’m not.

Living, it seems, is the hardest part of being alive. I have seen so many of my friends fight ferociously against their bodies, or their minds, relentlessly insisting that they give up. I have seen one friend lose that battle this year. I have seen many more come so close, time and time again. It exhausts me. And it hurts, moreso because I can see, feel it hurt them. So many of my closest friends are clinging so hard to Life that it feels selfish to question its validity–but I wonder how these people do anything in a world stacked so unfairly against us.

So we live another week. They survive another week, another rib head lodged in the trachea, another appointment that could be the last one. The neurosurgeon was optimistic, in the oppressively realist way all good doctors are. They live through parents who act like landlords, cold shareholders questioning their investments. Their parents make me furious, and all I can do is reply to an email on their behalf when they lack the energy, or put a hand to their knee, or crack another joke that feels less and less like the right thing to say everytime.

There are still good days. A surprise visit from a friend that becomes three or four friends, becomes a house filled with eight merry people who are glad to be alive. An idle chat in the loft that turns into a two person dance party. A spine that takes only five or ten minutes to realign and not thirty or forty. A day painless enough to write or edit a poem, complete an Officeworks order, get all the way downstairs to the kitchen. A day with no leaks or nosebleeds or loss of speech or loss of movement or mini-strokes or life-threatening dislocations or parts of their brain dying. I lose the distinction between my days, counting from disaster to disaster and relief to relief. I’m supposed to ‘take some time off’ this week, to go away at the end of the month, but my heart clangs in my throat no matter how many times I am told none of this is my fault. I know this isn’t my fault, but I can’t see anyone else who will carry that blame if I step away from it.

The trouble with chronic illness and disability is that it is always someone else’s problem. The GP can’t provide answers, go see a specialist. The specialist can only run the tests at their disposal, go see a GP for a prescription. The GP can’t take responsibility for the potential risks of that medication, go see a specialist. The paramedics and emergency registrars can only fix the problem they see in front of them, go see your ortheopedic surgeon. The psychologist can only help with pain of the mind, go see someone who can fix your body. The physio, the chiropractor, the osteopath, cannot prepare you for death, go see a grief counsellor. The voice behind the Centrelink desk can only put these documents through to their superior, try calling later in the week. The government can only spare so much money, so much time, so much thought, for the perplexing puzzle of you. Parents can only go by the verdict of the doctor they never took you to see, surely the medical system takes the fall for this one. Get a job, get government handouts, get more exercise, get more rest, look into surgery, look into palliative care, look into everything you’ve already looked into a thousand times to see if it might help a little better than the person currently in front of you. It’s not my problem your body is killing you, they all say. Who’s problem is it? Who’s fault is that? Who’s to blame for the perplexing puzzle of you?

They feel like a burden, no matter how many times I tell them (with unwavering conviction) that they are not. They want not to feel like a burden for themself, more than anything. More than they could ever burden me, even if they tried, they are a burden upon themself. It’s hard to feel like I can come first, that my moods and worries and deadlines and appointments should be worth anything in the face of this monolith they can only carry alone.

It is funny, and so unsurprising, that both of us feel constantly as though we are burdening the other with our existence.

A friend was in hospital this week, is now out. Another friend was back in  hospital this week, still there. My grandfather is in hospital, a fall that became two falls, that became pneumonia rattling in a chest we are told the Catholic Church has demanded not be cremated. My grandmother thinks my mother has a boyfriend named ‘Frank’. I want to stop seeing ghosts. I want to stop waking up worried that everyone I love will die or leave me, or both. I want to stop going to sleep hating myself for not having done more, never having done enough, never being enough. I want to stop feeling guilty for every unfettered breath I can take. I want to stop walking the halls of a house that feels haunted though no one has died yet.

I was seventeen the first time I had to talk anyone out of killing themselves. I was seventeen years old the first time I knowingly saved a life. And, in my tiny ways, I know I have saved many more since then. I feel like, each time I do, I earn some small fraction more of my right to be here. To win the fight to be alive you need everyone around you to fight too, you need a village, an army. Knowing you’re a pary of someone’s army, however small, helps. It helps stop the helplessness from caving in around you.

But I’m alright, really. I have deadlines and readings and workshops and friends, I have an army of my own the size of which I’m still discovering. I get some time out at least once or twice a week to watch a film or a TV show on the red armchair in the living room. I try to make it out of the house once a day, I try not to let the terror trap me. I’m just tired, really, tired or grumpy or creatively blocked, or something. I’m alright because the people around me are less alright. I’m alright because someone in every room needs to be the calmest person in the room. I’m alright because I have to be, there aren’t two ways around it.

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