At the tender age of 12, I became the youngest person in the southern hemisphere to be diagnosed with multiple sclerosis (MS).
I didn’t know much about MS when I was 12. I had done the MS read-a-thon and walk-a-thon in primary school, but I was far more interested in getting the prizes than in information about the disease. My concept of it however was something that affected greying old ladies. I certainly did not think, sitting in the presentation assembly in year six, that I would be diagnosed less than 12 months later.
I can’t clearly remember when I first noticed something was wrong. I can remember watching Neighbours with my younger sister and having to ask her what was happening and wondering why I couldn’t see properly. I remember being nervous about saying goodbye to friends at the end of school because I couldn’t see their faces and wasn’t sure who it was. I started to lose sensation in my fingers and toes and constantly felt like I had pins and needles. A few weeks passed like this until one day walking home from school I was very nearly hit by a car. My mother rang the doctor the next day.
My dad was away the day we went to see the GP. I remember the doctor putting eye drops in my eyes. The first drop had no effect but the second made my vision go yellow. I remember the look of concern on the doctor’s face that I only had a reaction in one eye. Then it was off to an ophthalmologist. More tests. More looks of concern. Next an MRI. I remember my dad suddenly appeared, having chartered a plane from Tasmania to be there with my mum. I remember sitting outside the room and my mother came out, she’d obviously been crying. She sat down beside me and hugged me and told me we had to go to the hospital. My dad carried me to the car.
I was in hospital for a few weeks while multiple tests were performed and they tried to figure out what was going on. I can’t imagine what those few weeks would have been like for my parents. After some time it was decided that I needed a lumbar puncture – a procedure to obtain fluid from my spine. I am so thankful I cannot remember this, I feel very sorry for my parents that they can. However that spinal fluid is my legacy to science because it showed no protein and confirmed that MS could occur in children.
When I was first diagnosed I was having episodes 3-4 times a year. When this happens I lose either my vision or my feeling below the waist, and over the last few years I have started to suffer severe pain around my face and head. I would usually be in hospital/recovery for about three weeks. That would add up to months of being absent from school. It was hard to keep up, socially and academically. Not a lot was known about MS ten years ago and trying to explain to teachers and peers was difficult. I encountered skepticism many times from both teachers and friends regarding my condition.