Sophia Malthus: My Story, as told to Elisabeth Easther

Sophia Malthus says once she left the spinal unit she went from being under full medical supervision to suddenly being out in the community by herself. Photo / Dean Purcell

Sophia Malthus was left a tetraplegic at just 19, in 2017.

When I was 7 and we lived in Blenheim, my best friend had horses and I learnt to ride with her. We'd go to the stables together and do competitions, and that's how horses came into my life.

At school I was averagely good at everything, but nothing especially stood out. I was also very studious and was interested in health, but I was also extremely squeamish so I had no interest in studying medicine. I can't even give someone an injection or pull splinters out, so I decided to be a naturopath and, after college, I studied natural medicine.

I was so set on that path but, after six months, I wasn't really feeling it so I moved into the racing industry because I realised I wanted to do something active. Because I'm small and strong, racing felt quite accessible and I was quickly offered a job opportunity as an apprentice jockey.

It was the bottom rung of the racing industry and not where I wanted to be forever. We'd get up at 4.15am and look after about 90 horses. They were all fed, ridden, washed and mucked out two times a day over two shifts. The morning shift ended about 9.30am and I had every second Sunday off. I definitely enjoyed the physicality and the lifestyle even though it was hard work.

I'd been doing it for about nine months when I was on a horse and it bolted. We went around a corner on a small track, and he went through a fence. I landed on the fence, my neck hit it, then I flicked back on to the track. I don't remember much coming up to the fall, but I remember quite a lot once I landed. My body was instantly numb and I couldn't feel my legs. I was lying on the ground but I thought my legs were sticking up in the air so I asked my co-workers to put them down. That's when they started to get worried as, initially, we thought I'd just been winded. The vet called an ambulance and, by the time it came, I'd self-diagnosed and told the paramedic I had a spinal cord injury.

My mum and stepdad came straight to the emergency department. When I woke after the neck stabilisation surgery, I was intubated with tubes coming out of all areas of my body. I couldn't speak so I had to use a board with letters to spell out my words to communicate. I was so tired after the surgery, but I was so irritated by all the tubes and losing the ability to speak, that I went to all the effort of spelling out "I'm so f***ing tired", which took a lot more effort than just, "I'm tired".

I had broken my neck and my parents were told I would be paralysed from the neck down but, the next day, I got really angry, and tried to rip the tubes from my mouth. My arm went sailing into the air and there was this massive celebration in the room because I could move my arm.

ICU and HDU were really good but the Middlemore Spinal Unit, where I was for three months, is really outdated. The staff are great, but it is such a sad place. It needs to be bulldozed and a whole new one built. The driveway is so steep, people in wheelchairs can't even get up it, although I suppose that stops people running away.

Sophia Malthus was injured in a riding accident. Photo / Dean Purcell

At the spinal unit, I was in a room with three other ladies. I was two weeks paralysed and it was the worst environment. My mental health had never been pushed like that and I was at my wit's end. I'm still glad I stayed there, though, as they have the acute medical experience you need in those first few months. But it also got to the point after three months, once I'd reached my goals - one of them being able to feed myself - that we knew I had to get out of there.

When I was at the spinal unit, one day a woman came to see me. She shut the door and said, "can we talk about your eating disorder". I was so shocked and offended and I said, "excuse me, I do not have an eating disorder, you're just trying to feed me disgusting food". I'd got down to 44kg and they thought I was trying to starve myself, but it was just because the food was so awful.

In a rehab setting, good nutrition is especially important but there, if you ordered toast, it would be cooked at Middlemore then put in a truck and brought to Ōtara. One of my therapists would come to work early in the morning to cook me eggs so I would at least eat breakfast.

Once you leave the spinal unit, there is no halfway house like there is at Burwood, and you go from being under full medical supervision to suddenly being out in the community by yourself. So I went to Laura Fergusson for rehab, physio and occupational therapy. It's like a miniature hospital that started for young people with disabilities, but now mainly cares for adults with neurological conditions, but there was nowhere else for me to go. I also dragged some of the friends I made at the spinal unit along with me, and they were really good to us.

The spinal unit was all about stabilising my health, and Laura Fergusson was all about learning basic skills and trying to figure out my new body. Like how to balance while sitting on the side of the bed for a few seconds by myself, or spending whole days trying to work out how to do the dishes or squeeze toothpaste out of the tube.

It's interesting to see how the people closest to you react when you get an injury like this. My stepdad has been amazing. He once heard me crying on the phone and was next to my bed in 20 minutes. It's actually been a blessing, having an injury like this, because it shows you who your true friends really are.

My childhood best friends are still around. My best friend sometimes gets me up and dressed in the morning. If we go out she cuts up my food and helps me go to the toilet. She doesn't baby me either. She'll see me struggling to push myself up a hill, but she won't start helping till I ask her. She wants to see me do it and doesn't want me to feel babied. I really appreciate people who still treat me like I'm the same person.

I've been working at Eden Park for nearly two-and-a-half years now. They head-hunted me by asking the spinal trust if they knew someone who wanted a job. I went to the interview, I don't think they realised my level of disability when they offered me the interview, but I managed to steal their hearts and they offered me a weekly shift where I greet people at the door and talk to people.

The CEO of Eden Park, Nick Sautner, he is absolutely amazing. I can go to him with any issues and he'll make fixing them a priority. He's also getting lots of disability events happening at the stadium. When I was playing wheelchair rugby, Nick came to watch a game and now he's working with NZ Wheelchair Rugby to host events at Eden Park. Nick and I believe Eden Park can be one of the most accessible venues in New Zealand.

I'm going to AUT this year to study law. I was 19 when I had the accident. I'm 23 now and this will be my fourth career change since starting with natural medicine, being a jockey, I also tried accountancy, and now law. Hopefully, I'll stay with this because I really want to work to improve the lives of young people with disabilities. Although I don't make too many massive goals for my future - I make short-term goals - because nobody knows how hard God laughs at your plans more than me.

Everyone deals with things differently. I don't want to suggest people who don't deal with something like this well are failing, but I choose not to dwell on things. I'm just living my life for me. I am my own inspiration. Yes I have a spinal cord injury, yes that means X Y and Z, but this is the reality, I don't feel sorry for myself and I get on with my life as it is.