In the morning I take my pills.
First, I take my anti-inflammatories.
Then, I take my pills for nerve pain, breakthrough pain, and long-lasting pain. You can’t crush the pill for long-lasting pain or it hits you all at once − it says so on the packet.
After that, I take the medication that counters the side effects of the pain pills. I take my probiotics and my vitamins. Finally, I take the powder that aids digestion in a thick drink, and I need to drink it fast, or it becomes a goop.
Every hour I have to walk around and tense my glute muscles; I set a timer on my phone so I don’t forget. I have to do my stretches and make sure I don’t sit down for too long. I can’t lift things or bend over. This means I am not allowed to pat dogs, or dress myself, or reach for things in the supermarket that are on the lowest shelf.
My mother buys me an extender claw that I can use around the house. It is extremely helpful but it makes me feel like an invalid. I try to hide it from my friends, or otherwise go along with the joke of how ridiculous it is. My boyfriend’s housemate finds the claw in our car one day and waves it around, snapping the air. I laugh like I don’t have to use it every day, like it isn’t my lifeline, like I don’t care about the fact that I’m not allowed to pat dogs.
From the outside, I look just like a healthy person. I have legs that walk and arms that bend and hands that grasp. I wish I could carry a sign around my neck that says ‘I have a chronic disease’, just so people don’t give me mean looks when I take the last seat on the train.
~
Chronic pain makes me bitter. It makes me spiteful and mean and ugly. It makes me lie awake with my heart pumping, clutching a pillow, counting down from 999 to 1 in order to calm down.
‘998, 997, 996 …’
Chronic pain makes me look at people on the street and hate them because they have legs that work, because they can ride bicycles and stand in bars and drink beer.
I stop looking at Instagram because too many people are going on hikes.
I now understand my friend who, when depressed as a teenager, told me happy music made her sad. She only listened to folk singers like Elliott Smith. Happy people make me sad. I stop listening to music altogether.
On my parents’ couch, I cry dramatically to my mother every few days. “I just want my life back,” I moan. “I miss the old me.” And she sits with me for hours, convincing me, begging me, that I’m still me, that I will get back to my life, that these things take time. And I listen.
Then, two days later, nothing has changed, and I fall back in to her arms.
“I just want my life back,” I moan.
~
I watch the old women doing aqua aerobics in the warm-water pool where I do my therapy. They bob up and down in the water like buoys, twisting their arms and spinning around to music from the 1920s. I watch them with a strange sense of envy. They have bodies that are allowed to be frail and weathered. They have lived full lives and probably gone on lots of hikes. They are fifty years older than me and they can bend over when I cannot.
I feel embarrassed doing my therapy. In the warm-water pool, it is just these elder women and babies and me. I almost want a child with me to justify my presence.
I start to go back to work for one shift a week. My manager is a big man who is turning sixty next year. He has bulging discs all down his back just like me. He hasn’t had surgery yet and asks ceaselessly for my advice. ‘Did it help you?’ he wants to know. ‘How much pain are you in now?’
My manager and I never used to have anything in common except our enjoyment of country music, but now it feels like we are comrades, like he is the only person who understands me. He tells me how often he wakes up unable to get out of bed, how the pain is ‘bearable, in the most unbearable way,’ and I know what he means.
He keeps telling me about Tiger Woods and eventually, one long, forum-filled night, I google him. Woods had four back surgeries and went on to play golf afterwards. I’ve had one back surgery and I don’t play golf, but it gives me comfort anyway − if Tiger can do it, why can’t I?
My manager loves playing golf and has planned a trip to Europe for his sixtieth birthday next year. All he wants is to be well enough to go. ‘I don’t want to wait five years or ten years to get better,’ he tells me. ‘I have things I want to do with my life.’
I am twenty-three years old, I think. I haven’t done anything with my life yet.
~
One day I am lying on the couch at my parents’ house, miserable and silent. The surgeon has just told me about my degenerative spine and I am convinced I will never do yoga or see live music or complete anything ever again. I am sick of entertaining guests from my bedside and I am sick of watching healthy people walk around and I am sick of hearing about the bouldering centre around the corner from my house.
My mother tries to tell me that it is not a death sentence, that we just need to find the right people to help me, that I can’t give up, and I am telling her she is wrong: that the surgery failed, that there is no one else we can turn to, that I am perfectly justified in how unhappy I am.
Then my father, a quiet man who builds up feelings in his chest until they release in a torrent of emotion, suddenly speaks.
‘You’re not letting anyone try to help you,’ he tells me. ‘You’re not even entertaining the possibility that you’re hurting people around you by acting like this.’
I tell him he’s an arsehole and storm off − but slowly, because I can’t stamp my feet.
Lying in bed that night, I think of all the people who love me, despite my anguished outbursts and unforgiving spine, and it makes my heart hurt.
I think of the life that I want to be mine. And it reminds me of something Rebecca Solnit once wrote, a better woman than I:
‘Every minute of every hour of every day you are making the world, just as you are making yourself, and you might as well do it with generosity and kindness and style.’
That night, I fall asleep holding every little thing I am grateful for close to my heart.
Caitlin Cassidy is a freelance writer and Masters student in Global Media at the University of Melbourne. She works at Readings.