Walking Alongside Lupus

I’ve always had some kind of sense of direction in life. Always had a rough idea of where I wanted to be headed and if I fell on my face, hey, that’s A-OK. I’d just dust myself off, throw my head back, laugh at myself and continue on my way.

These days it’s a little bit different.

More than three months in and I’m still trying to find exactly which direction makes my compass point north. You would’ve thought I’d have managed to work it out by now, but it’s not quite so easy when nothing ever remains constant.

I’m an analytical person and I always have been. I love numbers and I have for a really long time; the reason I like them so much is because they’re black and white, they don’t change: I’m either right or I’m wrong — it’s just that simple.

For me, they’re safe and these days I need that more than anything.

At university, I’m taking solace in complex mathematics because it’s something I have complete control over. Even more than that, when I need to I can put down my pen, walk away from it, and come back whenever I’m ready.

I get to decide when I want to start again, when I need help and, most importantly, when I’ve had enough — and no one and nothing else gets to dictate that to me.

Lupus is the hardest thing I’ve ever had to try and wrap my mind around. It’s selfish and it’s greedy: it doesn’t just want to own part of my life, it wants it all and, if possible, it wants it now.

It’s impatient — like I am.

I was discharged from the hospital at the beginning of June and told that — if such a thing was possible — I’d won the lupus lottery: while my condition was obviously, incredibly acute, it had yet to cause any chronic damage. My doctors believed this in large part had to do with how much physical activity I did, and encouraged me to ease back into it, and to continue to persist in being as active as possible; it would only help me.

The day I came home the only thing I wanted was for my life to go back to exactly how it used be, my life was rarely ever static and that was what I craved. I wanted to be making coffee on the weekends again, smiling and talking with the customers in that cute little harbor-side café. I wanted to be running around the netball court — no matter how uncoordinated and clumsy I was.

I wanted it all back and as quickly as possible — if not faster.

And so, just like with everything else in my life, I pushed for it and I pushed hard.

Less than two weeks after I was discharged, I turned up for netball training and ran around that court. It never even occurred to me that, considering how much my body had only just been through, this was a very quick turnaround — in fact, at the time I felt as if that process was still painfully slow. And had it not been for others stopping me, I would’ve tried for much more.

The reason I fight so hard against lupus is because, for that month before I was admitted, I unknowingly lived with it while it wreaked havoc on me. For that month I was slowly overcome by something that tried to destroy me from the inside out.

Everyday, I’m still finding out what it means to live with lupus: I’m constantly checking my compass only to find that north is never where I used to know it was. I’ve gone through more existential crises than I would’ve ever thought possible at 20 years old.

But at my core I know who I am, and regardless of how many times I have to change directions, I’ll make sure to walk my path alongside but parallel with lupus. I know I can’t ever escape it; it’ll always be there. It’s part of who I am and I’m slowly learning to come to terms with that.

I may have been sentenced with lupus, but in the same instance, lupus has also been sentenced with me.

And if it thought I’d go quietly, it’s in for a rude awakening.