“I fear oblivion,” he said without a moment’s pause. “I fear it like the proverbial blind man who’s afraid of the dark.” … I looked over at Augustus Waters, who looked back at me. You could almost see through his eyes they were so blue. “There will come a time,” I said, “when all of us are dead. All of us. There will come a time when there are no human beings remaining to remember that anyone ever existed or that our species ever did anything. There will be no one left to remember Aristotle or Cleopatra, let alone you. Everything that we did and built and wrote and thought and discovered will be forgotten and all of this” – I gestured encompassingly – “will have been for naught. Maybe that time is coming soon and maybe it is millions of years away, but even if we survive the collapse of our sun, we will not survive forever. There was time before organisms experienced consciousness, and there will be time after. And if the inevitability of human oblivion worries you, I encourage you to ignore it. God knows that’s what everyone else does.”

Green, J. (2012). The Fault in Our Stars. Penguin books.

When I first got sick, I spent a week hospitalised with so many symptoms and no ideas of causes. It was difficult. Sure, we had just assumed it was a regular old UTI, I’d gotten them every few months growing up. Now before anyone who thinks they know anything gives me some tips, let me make this clear: CRANBERRY JUICE IS A MYTH. This is not in any way meant as shade if you use this and think it works, but believe me when I say the next person to give me cranberry juice calling it the ‘almighty cure’ may get a bit of a surprise when they see where I put that juice… in the bin. Jeez, don’t be so dirty-minded.

Now that the rant is over, where was I? That’s right, a week in the hospital. In theory, I didn’t think that it was bad, regularly a week is seemingly so short but at the time I got a lot of responses contradicting that thought. Whenever someone visited me at the time, I received a lot of odd care packages, pitying faces and audible gasps in response to the doctor’s unknowingness. God, it’s like I was attending my funeral except instead of flowers I got kimchi and blankets because kimchi is good for digestion and well… it was a fuzzy blanket, and have you tried sleeping in those hospital beds? Itchy and Scratchy from the Simpsons now embody pillows and sheets in your room. Everyone who came over was astounded that I’d been there for so long. Apparently, normal hospital visits last two to three days at the most. That was news to me.

Everyone made it seem like such a big deal, it got in my head, I caught a bad case of the worrywarts. At every change, my thoughts spiralled down a new path and I could have created the ‘Spider-Verse’ had I continued in so many different directions. I was grasping at whatever straws I could find to explain the situation, it was normal, I always get sick, this was normal. Except it really wasn’t. I can say it was similar to the different kinds of sick I’ve been, not that there were many to choose from. This one hospitalisation set the course for many more to come, I didn’t know what was wrong with me, and I didn’t know when or if it would end. The short week stretched into an eternity. I like to think it would have been different if I’d known. There’s something absolutely terrifying about not knowing. Especially when you’re the topic. I don’t like surprises. I mean name a good one! I guess surprise parties and gifts can be good… oh and those videos of when someone commissioned in the army comes home and surprises their family! Okay so some surprises are good, this just wasn’t. I compared my reality to that of oblivion, in that it was inevitable and terrifying and soon forgotten. But that’s a story for another time.

By the end of the week, the doctors concluded it was a kidney infection. Damn it hurt. Myself being only around ten at the time, I didn’t understand the difference. I just knew it hurt a whole lot more than my other infections. Heck one time my class performed a rap song at assembly (Christian rap but it still counts, hello Kanye?) and despite having gone to the GP that morning and getting a prescription for antibiotics, I still got on that stage and rapped my little kidz bop heart out. This was different. The pain travelled through my spine and spread throughout the whole of my back. It was debilitating. Crippling. Agony. It had hurt the whole time but sometimes when you get validation that it’s real, it’s like it hurts more. When a toddler falls at the playground, and as soon as you start making a fuss, they lose more tears than Elena… in most episodes of the Vampire Diaries. It’s because their pain is recognised. With recognition, it’s like you have permission to feel the pain. After having fevers, shivers, hot and cold flashes and terrible pain for a week and not knowing the cause was so scary. But knowing the cause made it real. I couldn’t escape it.

When explaining it to me, one of the doctors began drawing a diagram. There was an outline of a girl. Inside the outline of the girl, around the ribs, he drew two kidney beans. He said “so you know kidney beans? Well, they’re like your real kidneys”. I thought he was insane. Inside my head, I was shouting “I’m high on painkillers right now and whatever else you have pumping through this IV so why are you describing kidneys as beans? You’re high, too aren’t you!”. Well to a certain extent. I was high. My brain was a big ball of squish…. And I was ten. Note these drugs were prescribed, stay in drugs, eat your school and don’t do vegetables. Wait… something isn’t right there. Anyways, then he continued with the picture and he coloured in the kidney(bean)s. At this point, I’m wondering how this doctor passed the first grade. The right was red, and the left green got to love colour association. My right kidney was described as ‘angry’ and the left as ‘happy’. The right was bad, the left good. Of course, this wasn’t news, I’d had kidney scarring since the womb. But now it made sense, and I definitely didn’t think he was high anymore, or a primary school dropout. I thought he was far smarter than me. Surely a medical degree doesn’t explain that… no, I needed a colouring-in for certainty. However, much I didn’t believe that doctor at the time, I greatly appreciate him now, he knew his audience.

This was my first experience of getting diagnosed. It’s a long process. It takes years, not unlike a divorce, or one of the many monologues from a Tarantino film.. It is a long and dragged out process, incredibly confusing and difficult, and normally it takes at least a year of doctor hopping before receiving a diagnosis for a chronic illness. Getting diagnosed is like a never-ending rollercoaster that only really goes down and has a few loops. Can other Spoonies relate? It’s an incredibly difficult and constantly changing process. It tires you out completely and sometimes you don’t get the answers you’re hoping for, but when you do it’s a better feeling than having your phone battery at 100%. Now this experience wasn’t when I was diagnosed with chronic illness, it was just the match that lit up a series of future occurrences with many different hospitalisations, illnesses, doctors, surgeries, just about anything in that realm of health. Not only bad things came out of this experience, I can now call when a bladder is going to burst on Grey’s Anatomy… oops, spoiler alert.

I have a friend Amelia, she is the type of person who will, when you start singing Breaking Free or Sweet Caroline immediately chime in with ‘soaring, flying’, or of course the ‘dun dun dun’. Together and with some other friends we embody the Stranger Things characters when playing Dungeons & Dragons in the basement, however, neither of us can ride a bike, I mean who needs to when you have a fake D&D girlfriend who happens to drive in real life? Amelia is also not more importantly but not unimportantly, a Spoonie. She has many illnesses, similar to myself, one of these including Myalgic Encephalomyelitis (ME), otherwise known as Chronic Fatigue Syndrome (CFS). While I’m no expert on this syndrome, I can tell you that it isn’t just feeling tired, its extreme exhaustion. Imagine that moment when you’ve stayed up all night with your mates, you’ve made it through the night and the sun is rising to a new day, the adrenaline is finally slowing down, and the sleepiness is finally setting in. That moment of complete exhaustion is almost constant for someone with CFS. They have constant flu-like symptoms and exercising becomes a greater struggle due to pain and inflammation in the brain and spinal cord. Saying its difficult is an understatement. Can you imagine being in a constant state of flu, yeesh!

What’s even more difficult is the diagnosis. For this particular disease, it took over four years of regular symptoms and one year of increased symptoms before she figured out what it was. In the time it took for Amelia to get diagnosed, Antman got stuck in the Quantum Realm, Black Panther and Spider-Man disappeared, and what I consider the greatest change; we’ve gone from ALS Ice Bucket Challenge to Tik Tok dance trends sweeping the globe. Renegade, renegade. I’ll stop now, I can’t dance. The point is five years is a long time. When she finally got the diagnosis, after hopping from doctor to doctor to get answers, she didn’t even know what was wrong with her. “I was just told I’d had this thing, this disease, and I didn’t know anything about it,” is how she describes her diagnosis. From then on everything just went to hell, similar to me in that sense. More doctors, more diseases. With one, comes all is a common mindset for people with chronic illness. I mean hey, we were always told we could have the world, guess this is pretty close.

So, I guess you could say we Spoonies have a little world of our own. While its an incredibly difficult situation and process, what gets to you the most is the isolation. The feeling that you are completely alone in this terrible pain and no one else cares. You completely understand the worth of friendship and who those friends are. When major things happen in your life, you find your people. They are the ones who stick around and don’t get bored, never let them go, they are your people. As terrible as it sounds, when Amelia got sick, I suddenly wasn’t alone. Someone understood. After all, all anyone wants is a little understanding and acceptance. To be a part of something. A part of a world. Just ask Ariel.

References:

“Grey’s Anatomy” Freedom: Part 1. (2008, May 22). Retrieved from https://www.imdb.com/title/tt1002875/

Denton, E. (2018, April 12). Best And Worst 2014 Trends. Retrieved from https://www.seventeen.com/celebrity/a26071/2014-best-worst-trends/

Department of Health & Human Services. (2014, September 30). Chronic fatigue syndrome (CFS). Retrieved from https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs

DisneyMusicVEVO. Efron, Z. Hudgens, V. (2019, August 22). Troy, Gabriella – Breaking Free (From “High School Musical”). Retrieved January 28, 2020, from https://www.youtube.com/watch?v=0qj67KE5VXI

Dockterman, E. (2019, March 8). Avengers: Infinity War Ended With a Major Twist. Let’s Discuss. Retrieved from https://time.com/5255759/avengers-infinity-war-ending-explained/

KarlStudios1. (2008, September 7). Neil Diamond – Sweet Caroline High Quality neildiamond. Retrieved January 28, 2020, from https://www.youtube.com/watch?v=1vhFnTjia_I

marcbranches. (2009, July 9). Kill Bill vol 2 Superman monologue. Retrieved from https://www.youtube.com/watch?v=eWTJIBGNId0

Multi Scene Packs. (2018, August 24). Sad Elena Gilbert Scenes | 1080p Logoless. Retrieved January 28, 2020, from https://www.youtube.com/watch?v=JCw3JBq6-x0

r/Graffiti – Stay in drugs, eat your school, don’t do vegetables. (n.d.). Retrieved from https://www.reddit.com/r/Graffiti/comments/9kjhyg/stay_in_drugs_eat_your_school_dont_do_vegetables/

The Little Mermaid. (1989, November 17). Retrieved from https://www.imdb.com/title/tt0097757/

Tik Tok It. (2019, October 25). RENEGADE RENEGADE RENEGADE TIK TOK K CAMP LOTTERY. Retrieved January 28, 2020, from https://www.youtube.com/watch?v=FukgMwwdwPM

USA TODAY. (2019, June 16). Watch the cutest reactions to military dads coming home | Militarykind. Retrieved January 28, 2020, from https://www.youtube.com/watch?v=p0csxhIcfDI

Vault Boy. (2017, September 20). The Itchy and Scratchy Show. Part 1. Retrieved January 28, 2020, from https://www.youtube.com/watch?v=bsSb0rvHr-s