When I was a kid, I lived with passion, safe in the knowledge that the future was wide open in front of me. In the space of one day, I would go from wanting to work at Burger King to being queen to working in a dentist’s office. The one constant in my plans, even from a young age, was that I would go to university and move to the United States. I was going to live this cool, adventurous life. Dreams were just reality that hadn’t happened yet. It was only a matter of time.
One day, I will be awesome.
I was 10 years old when I first got sick. The headaches, inability to focus and exhaustion came out of nowhere. I was in my final year of primary school, and the move to secondary school the following year was nothing less than a disaster. I was rarely able to make it to a single class, and at one point, my mum was told she should force me to attend. For a long time, we didn’t know what was wrong, and there was no educational support for kids with long-term health issues, so my education was a shambles.
A couple years after it first started, I finally got a diagnosis: Myalgic Encephalomyelitis (M.E.). In this case, a diagnosis wasn’t necessarily good news — there’s no treatment for M.E., and no cure. But a real diagnosis meant my school finally got the message that I wouldn’t be miraculously recovering in a few weeks, and so I was given a sparse amount of home tuition. My life shrank down, restricted by my own fatigue and pain. The only hope was that I’d be lucky and recover over time.
One day, I’ll get better.
School friends slowly faded away. None of us knew how to deal with my illness. The last sleepover I was at, my mum had to come get me because I had shooting pains in my head. My daily life consisted of staying with my unemployed father during the day, watching reruns of “Diagnosis Murder” or reading if I could concentrate.
I’ve always been a big reader; I used to knock out 12 books a week sometimes, and before I got sick, I was steadily working my way through the teen section at my local library. Sci-fi, fantasy and horror were my favorites, but anything would do. Books became my escape. I was in another world, having the grand adventures I’d always dreamed of. I developed an interest in mythology and all things supernatural, but when my brain just wouldn’t co-operate, I filled my time with busy work like jewelry design and computer games. I started dabbling with writing — just silly stories that would never see the light of day. My days bled together; months and years passed in a monotonous blur. I filled my time with “Buffy” and “Dark Angel”, strong kick ass women who were everything I’d never be.
One day, I’ll be back in school.
Fast forward to when I was 17, and I was shocked to still be sick. It was as though I’d blinked and the world had jumped forward without me. While I’d known my condition was longterm, I had never considered that I might not recover in time to go back to secondary school. But there I was, in my final year, and the only subject I had the time and energy for was math. I left school with a single B, which is not too shabby a grade, but if you want to get into a decent university, you’re usually expected to have four or five of those little buggers. There was no way that was going to happen.
So here was another unexpected truth I’d have to face: university wasn’t going to happen as easily I’d assumed. Even if I had recovered overnight, I wouldn’t have the grades. And there would be no cheerful montage of me and a backpack, exploring foreign cities and ancient sites during a gap year. My adventurous life was going to be delayed a little.
One day, I’ll be a normal student.
I started studying with open university, which allowed me to work at my own pace from home. It was great — finally, something that didn’t assume I lived at the same pace as everyone else! Still, it didn’t all go smoothly; I had to drop out and restart classes a few times. My passion for mythology and writing guided my subject choices, and I assured myself that I could use the credits I earned to transfer to a brick-and-mortar university when I was better — I could still live the dream like everyone else. I wanted this desperately, and I was absolutely certain it would happen — there was no doubt in my mind, despite previous disappointments.
When I was 20, my grandmother died, and I fell apart in slow motion. I could write an entire essay just about how amazing and inspirational she was. No dream was too big for me in her eyes, and her constant support and encouragement is part of the foundation of who I am. Time ticked on without her, but I lost all passion for the things I was doing.
One day, it won’t hurt.
I stopped writing, and for five years, I lived in this kind of numb state, the “I’m fine, everything’s fine” sort of existence. Then, finally, I spoke to a counselor. After tears and an outpouring of over a decade of bottled up stress and frustration, you know what I realized?
“One day” doesn’t exist.
I’d been living in this bubble, waiting for some signal that it was time for my life to start. All that time was wasted, putting my dreams on hold until that elusive “one day” when I recovered. It had been 15 fucking years, and my health was still no better than when I was 10. Those dreams were dead, and clinging to them was making me rot from the inside out.
Today.
I may never get better. I may never have the opportunity to live without having to carefully weigh out the effect each action will have on my health. Of carefully spacing out activities so that I have time to recover. Of having to decide if something was worth being sick for. Of missing out on the opportunities that so many people take for granted, like having a normal fucking job, or stopping for a pint with friends. Of not having to worry about spending my entire holiday stuck in a hotel room because the flight was too much to handle or the sun is too bright (seriously).
This is my reality. Denying this has hurt me. The things I’ve missed in life make me so angry sometimes, and if I could send a message to my younger self, I’d tell her to cling to the world as much as possible. Don’t ignore what you want now because you think it will be easier tomorrow. At 27, and after 17 years of illness, I’m done pretending it’s all fine and just a matter of time. But there’s something freeing in that, too. It’s about making today as good as possible and counting the wins.
So here are mine.
Last year, after eight long years of study, I got my BA (upper second class honors in classical studies and creative writing, and hell yes, I’m bragging). I’ve managed some mild adventuring to Pompeii and Herculaneum. I’m editing my first novel, with another one drafted and a third on the way. Because I’m a writer, and one day I’m going to be a published writer.
Over the years, I’ve learned a lot about myself. I know that I can get easily distracted, but I’ve also gained confidence in my abilities and in my own strength. I learned to stand up for myself instead of getting run ragged trying to please everyone else. I have pride in who I am and what I’ve done, even if those achievements seem small in the eyes of others.
I know that there are some things worth fighting for. And on those days when the darkness creeps in, I have good people around to hold me up. My old dreams might have died a slow and agonizing death, but I have new ones now. All the better, because they’re real. They don’t hold me back, they push me on to fight for what’s really important.
So fuck “one day”, because today is pretty awesome.
