My spinal cord injury explained

I have a spinal cord injury.

I have a disability not an illness or disease.

I am healthy and rarely get sick. I am still at risk because my spinal cord injury has resulted in reduced lung function and having fragile bones.

I wasn’t born with my disability.

I sustained my disability as the result of a car accident when I was five and just weeks before my sixth birthday. I don’t remember my accident or much of my initial hospital stays.

I can’t feel from the chest down.

Not at all. I am completely paraplsed. I can’t feel touches, burns, scratches. If something is wrong with my lower body then I will get headaches and my legs will spasm to tell me something is wrong and I have to investigate what is wrong. I have burns on my thighs after placing a heat pack on my lap and leaving it there for too long because I wasn’t able to feel the burn. Some days my legs feel like a heavy, dead weight.

I have trouble controlling my body temperature. 

I can’t feel if I am too hot or too cold. I also can’t sweat. This means that my body can’t cool itself down. Instead, I’ve had to use spray bottles to cool down. My lips will turn purple when I am feeling too cold.

My spine is curved. 

I lean towards the left. There have been attempts to straighten my spine by wearing a brace since my accident to my first spinal surgery. I’ve had three spinal related surgeries.

There is metal keeping me upright. 

There is metal with screws attached to my spine to keep it from collapsing and prevent my organs from being squished. My first spinal related surgery was in early high school. My doctor accidentally collapsed my lung which landed me in intensive care with a breathing tube. This was followed a few weeks later by my second surgery to infuse my spine with rods. My Mum wasn’t happy with the result, and after a second opinion and just two years later I had the same spinal infusion surgery. My surgeon had a soft spot for me and was honest in that he wouldn’t be able to get my spine to be any straighter.

I am small and light. 

My growth has been reduced due to my spinal cord injury. There are benefits to being small and light including being able to be picked up when there’s stairs.

I have small feet.

So small that I wear kids shoes (sizes 12, 13, 1 & 2). My growth was reduced due to my spinal cord injury and not walking on my feet. I also tend to have a Cincerella moment and lose my shoes often because I don’t know when they have fallen off.

I use my shoulders differently. 

My shoulders won’t last forever. I once had a physio tell me that my shoulders are like a bank that you can take money out of but can’t deposit. Shoulders aren’t made to act like legs. It’s important that I look after my shoulders by doing exercises and limiting their use including pushing on easy surfaces like wooden floors and minimising transfers. I’ve suffered shoulder problems and may need surgeries in the future.