The Work Nobody Sees
Most people my age are building careers, coupling up, starting families and doing whatever twenty-something-year-olds are supposed to be doing. Meanwhile, my calendar is full of appointments, support worker rosters and trying to keep my body functioning. From the outside, it can look like my life isn’t moving forward at all. If I’m honest, there are times I’ve believed that too.
I used to have grand plans. The kind that looked impressive on paper. Making my Paralympic debut before I turned 21, having a career I was proud of, and a life that followed the timeline I’d imagined. Then, somewhere along the way, my biggest goal became getting through the week with my body cooperating.
On paper, cerebral palsy isn’t a progressive disability. Living with it, though, can feel like a very different story. The brain injury I was born with hasn’t changed. My body, however, seems to have missed that memo.
We like to say that cerebral palsy is the gift that keeps on giving. And as I get older, nothing could be truer. Symptoms that appear like they should have nothing to do with my disability, most of the time do. Mental health issues? CP. Digestive problems? You guessed it. Pain? Yes, that too.
Over the last few years, one health problem has become another. Stomach problems became another thing to constantly manage. A shoulder injury eventually led to brain surgery. Those became an endless cycle of appointments, scans, medications, therapy, recovery and trying to work out what my body was going to throw at me next. Some days, simply existing feels like a full-time job, and the health side of things is only half of it.
Living independently with a disability means my life runs on systems. Support worker rosters, funding reviews, service providers, equipment, paperwork, phone calls, emails, meetings, and constantly trying to work out who is responsible for what this week. If something falls apart, it usually becomes my job to put it back together.
People often talk about independence as though it’s a destination. You move out, get your own place and become independent, as though it’s something you achieve once and never have to think about again.
For me, the reality is much less glamorous. Independence isn’t something I achieved years ago and never had to think about again. It’s something I maintain every single day through appointments, rosters, replacing equipment, filling in forms and solving problems before breakfast. It’s work, and it’s work that most people never see.
If someone asks what I’ve been doing this week, it can feel strange to answer. “Not much,” is usually the easiest response, even if it’s false. Three days disappear into therapy, medical appointments, NDIS paperwork and support worker dramas, then I try to squeeze running a business into whatever energy I have left. Somehow that never sounds like a productive week, even though it’s exactly what keeps my life functioning.
Sometimes keeping my life functioning is the achievement. Sometimes making sure I can continue living independently next month is more important than ticking another goal off a list.
I still have big dreams. I want to represent Australia again, build a successful business and create the kind of life I imagined for myself. Those ambitions haven’t disappeared, but I’ve had to accept that my life doesn’t have the luxury of moving in a straight line. Sometimes I sprint towards those goals. Sometimes I spend months standing still while my body catches up. Sometimes I have no choice but to focus on staying healthy enough to keep chasing them at all.
For a long time, I saw those periods as failures. I fought them as hard as I could because I was convinced every second spent recovering was another second I was falling behind.
I’m starting to realise that’s not true.
These days, I know my body has limits whether I like them or not. Fighting them doesn’t make them disappear; it just guarantees I’ll spend longer recovering. Getting enough rest isn’t me falling behind anymore. It’s how I make sure I can keep moving forward. If I’m in bed before five o’clock, I’m probably on track rather than failing.
My life hasn’t stood still. It’s just that so much of my progress happens in ways nobody else can see.
“Work” now means I sat at my desk for a bit and assembled an essay, instead of doing a job someone is paying me directly for and then going to bed once I’ve had enough.
A few years ago, I would have looked at a day like that and thought I’d accomplished nothing.
Success no longer means working three jobs while training six hours a day, as much as I’d like it to. Instead, it looks like me doing the things I need to do to keep my life going somewhat smoothly.
Now I know that keeping my body functioning, my home running, and my business moving—even slowly—is work too.
It might not look like the kind of progress I imagined in my twenties.
But it’s still progress.
If you enjoyed this article and would like to support my writing, you can buy me a drink below. Every contribution helps me keep publishing weekly essays about disability, technology, AAC, and whatever else has captured my attention that week.