Jessica Knight
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‘If you can’t take the pills.’ The doctor said as I sobbed.
‘We can’t give you a new kidney.’
My meds keep my father’s kidney sitting happily inside me. I couldn’t swallow pills as a child.
Now, I buy Nippy’s Iced Chocolate Milk in bulk and swallow a handful of meds every morning and night.
These little rituals are imperative.
Some days the setting up another week of medication feels huge. I can barely face the mere thought.
The opening of numerous boxes, the popping of pills from blister packs.
My instinct says don’t bother, give it up and see what happens.
Sometimes my instincts are the enemy.
‘Want me to do it this week?’
Magic words of love.
The machine is new. It helps keep my tiny lungs keep kicking.
‘Do you wake up in the middle of the night gasping for breath?’
‘Yes. I thought it was panic attacks.’
‘I won’t use the machine. It’s unsexy and ugly. I would rather die.’ I sob in the ICU.
Sometimes my instincts are the enemy.
My nurse rubs my back soothingly.
My lungs had been storing poison inside my chest for over a year. I sleep badly and woke up with a sluggish mind and heavy body. It felt like I was trudging through the swamp of sadness, the mud slowly swallowing me, there was no luck dragon coming to whisk me away. The agonising headaches greeted me every time I woke up.
The first night I used it I didn’t sleep much. I lay there in my hospital bed with a respiratory nurse coming in and out to check on the machine and me. She would stroke my forehead and squeeze my hand.
‘I’m scared to go to sleep.’
She promises I will be ok.
In the morning I remove the mask. I didn’t tear it off in an angry tantrum in the night.
My head feels clear like I slept deep and proper. I dreamed.
No headache pounding at the back of my skull.
Oh great. The fucking thing works.
A medical object helps a human object function.
The first morning at home again I couldn’t even spoon porridge into my mouth, so overcome with grief regarding my own body and how it had betrayed me in a new and scary way. Now bedtime was not free of medical intervention.
How can I make this beautiful? Perhaps it’ s not in how the machine looks. The beauty is in what it allows to happen: breathing in and out, soft and consistent taking in the good and breathing out the bad so it doesn’t collect and conspire to destroy me.
During the day I keep the machine under my bed and out of sight. I’m separating the day version of myself from the night version. A little bit of self-delusion never hurt anyone.
I had no intention of ever sharing these particular details. Then I was invited to be a part of this small coven of chronically ill slash disabled creative witches.
I struggled to get the courage to show the objects that sustain my life and allow me to continue to exist as a living breathing thing. What’s the point of ensuring I sleep to dream, keep breathing, if I don’t embrace the less tangible things: reading, writing and take creative risks, that give my waking life joy, make it beautiful.
Give it meaning.
