Is it home or hospital?
I find myself back here, tangled amongst cords and IV drips with the sporadic beep of my heart droning on and on in the background.
As if it has to remind me of how much work I’m putting it through.
If hospitals are meant for rest and recovery, why is there a light flicking on every half hour with a new nurse checking my vitals and asking me to rate my pain on a scale of one to ten? Seriously, how do you even answer that? What a stupid question. Is ten death? Am I being too dramatic if I say seven? Will you send me away if I say anything less then five?
They say that our bodies are our temples, but they can also be prisons. I am sick of being sent away as the nurses’ roll their eyes. I am sick of specialists staring at me like I’m some weird robot that they can’t find a “restart” button on. I am sick of doctors scribbling down anything they can think of, so I’m sent out of their ward and duty of care because they have no idea what the fuck is wrong with me.
I’m sick of trying to love a body that treats me like trash. Lord, please give me strength to be free of this place one day.
Freedom is not easy when those cords and needles are often the only things holding me together as they pump me with fluids to keep me alive.
‘Alive.’ Strange word. Is the blur of these hospital trips and months spent bound to a bed really defined as “alive”?
The first dictionary definition of the word describes it as, “living, not dead”. In that sense, I guess I make the cut. My heart is pumping blood and my cells are attempting to fight all those evil little pathogens that I am absolutely teaming with. But the defining words that follow are; “alert and active, animated, interested and able” …in that regard, I’m defiantly slipping.
I was given a glorious little taste of health in the sweet, clear air of New Zealand. That’s when I realised how close I was to falling off the mountains’ edge and back into the pit of disease. I’d progressed so much over those long months. Like a newborn babe learning to take its first steps, I built the strength to walk around the block rather than down the hall to the bathroom. Next, regained the skill of holding a conversation for a decent amount of time without loosing focus of the words. I learnt to monitor my episodes and be aware of when were approaching. I chose my energy expenditure wisely throughout the day, and became in-touch with the way I now had to function. Slowly, with a lot of patience, persistence and work, it all became second nature until suddenly I was hiking the hills of Christchurch.
Over the months, these achievements got bigger (moving house, living independently, maintain a job, all with the burden of being chronically ill).
With so much success and pride of everything I managed to achieve, I’d forgotten that the way I live isn’t actually normal. Normal people do not have to say no to seeing their friends because they’re afraid they might collapse or simple don’t have enough energy to interact. Normal people don’t see getting dressed as an activity that will leave them breathless, or preparing a meal as a job that requires so much effort that sometimes it’s actually healthier to just skip it altogether.
Focusing on the effort of such minor activities doesn’t leave much room for much else. Even without the parasite invasion of my brain, simple things like self-care that should take five minutes, now take up a good half of a day.
Although I am (mostly, within reason) physically able to take part in daily life like any other person, I still struggle with the cognitive side of things. I have to deal with the mush this explosive illness has left behind in my mind. My eyes loose focus and I can’t make sense of the sounds my ears receive when someone speaks. Words come slowly — disjointed and jumbled. I hear my own language in a foreign tongue: I know what they’re saying, but none of it makes sense. I laugh through my sentences to keep the mood light and casual, pass it off as a joke. But I’m struggling wildly.
Being back at university is a huge reality check and slap in the face as to what I can and cannot deal with at this stage of my journey. I barely made it through O-week, let alone actual classes. It’s now the beginning of week four. I’ve been hospitalised twice, missed a whole week and a half of classes. My glands are so swollen I can hardly get air in my lungs and I’ve had plenty of time to lie in bed and ponder the situation. Learning is not what it once was. Ten minutes without a break is my maximum concentration ability to actively absorb and process materials. Hence, an hour lecture goes in one ear and out the other. Put me in a two-hour tutorial or prac, and I’m in an anxious state of nerves trying to understand what’s happening. Obviously I can manage it and appear calm, but I’ve really had to strategize techniques to push through those classes. When I get home I very very slowly go over the material. It usually takes me three lots of re-reading or active learning on a single topic before I properly understand. Grouping the words to write this required just as much effort.
Which leaves me faced with a very difficult decision, one that is tearing me apart to make.
If you were to see me now, you’d think I was full of rubbish. I look like a regular 21-year-old girl. I eat a healthy diet, get daily exercise, laugh with friends and to be quite frank, appear to be in my prime. Unfortunately that’s the real killer of my condition: nobody ever truly knows how much pain I’m in. And if I try to explain, they just can’t understand. What’s in front of their eyes contradicts the words they hear.
“Everything will be alright in the end. And if it’s not alright, it’s not the end.”
Regardless of wether or not I have to drop out of Uni, I am proud of how far I’ve come. I don’t see this as giving up, because I know I’m coming back. I’m not saying “I cant do this” in the drama-queen tone I once possessed when a school project wasn’t 100% perfect. I’m saying: “I can’t do this” because I know that it’s okay to acknowledge what my body is trying to tell me. I’m beyond devastated that I cannot proceed with the thing I’m passionate about doing. It’s soul crushing, but being heartbroken is a good sign because it means we’ve tried for something. It may take me much longer, but I know that each little step is an “I can” in the right direction.