My Story: The Metal Beast

Most people are pretty cool when I mention that I’m disabled. I don’t look it, so it does take people by surprise. Most of the time their reactions are wonderful; however, there are those who simply look hysterical: they grimace and look away. I can’t do anything to allay these people’s panic. They think you can catch what I have. You can’t. You can’t catch a genetic disease.

Spinal muscular atrophy, or SMA, is a recessive genetic disease that affects the motor neurons. People with SMA have a missing or mutuated gene, the survival motor neuron 1 (SMN1), which provides instructions for making the SMN protein. Without this protein my motor neurons, which control muscle movement, will eventually die and won’t be replaced. The nerves in my spinal cord will rally round and try to compensate for these wayward neurons, but eventually even they will give up the fight.

I walk slowly and carefully – friends tell me I walk as though I have all the time in the world. Every step takes time and patience. Any little thing that throws out your centre of balance sends you sprawling, and you fall harder as the years go by. A fall you had a year ago simply gave you a bruise. The fall you have today shatters a finger or tears a ligament.

The simplest things become back-breaking tasks: picking up clothes from the floor, putting on underwear. I wake up tired. It’s as if the effort to roll over in bed has just sapped all the strength from my body.

Eventually I’ll have to use a wheelchair full time, and this scares me. I’m always wondering when that moment will come.

The doors of my life appear to be shutting all around me. It’s a feeling so full of terror, I can’t describe it.

I couldn’t press the button on the antiperspirant today. I find when I’m tired, I can’t open pop-top glass bottles. I can’t cut meat. My knife hand pushes feebly downwards, making no mark on the food at all.

I hate the constant tremors in my hands, the constant fear of standing up in public. I hate the slow trudge of my feet as I drag them along, staring down at them, willing them not to tangle and take me down.

But hey, it’s not like I wasn’t warned – it’s just that when you are 12 years old, you think you will always be like you are. That was the age at which I was told my body would one day slowly deteriorate.

Do you take in anything at all when you’re 12? I remember thinking about the new AC/DC single my mum had just bought me. I remember sitting neatly in that straight-backed chair in the doctor’s office; my mum sitting, hands folded in her lap, a stiff look on her face; the doctor reciting the three lines of information from his textbook of rare diseases, the results of my tests in his hand. I have not forgotten all those long needles they stuck in my legs, the electricity that pumped through me to see what nerves worked, the way they pulled my limbs back and forth like toffee.

I remember stepping outside into the sun and crying endless tears.

We both walked slowly back to the car, side by side, only to find that my precious single had all but melted on the front of the dashboard. The hot Brisbane sun had warped the black acetate and it stuck pathetically to its paper wrapper. I was furious and blamed the disease.