“We see the world, not as it is, but as we are- or as we are conditioned to see it”
Every year, my friends and I partake in a ridiculous 650km mountain bike adventure from Derby to Kununurra (remote Northern Western Australa). It is a crazy journey and I don’t know why we do it? Maybe it’s the adrenaline rush or the bond you form with your team and other riders. Or maybe its being involved in something that makes a difference. This year we are fundraising for the Kyle Andrews Foundation. A Foundation that helps kids battling cancer to feel normal for a few days.
In 2014, having just been diagnosed with nuero myelitis optica and suffering a brain stem bleed, I made the difficult decision not to go on the Gibb River Challenge. It was soul destroying, but a sensible decision. I wasn’t actually able to ride a bike at the time 🙂
With each set back and every step along my journey with this debilitating disease I have maintained that I WILL do another Gibb River Challenge. I WILL make the most of my body and mind while they are able. I’ll do it for those who can’t. I have been fortunate enough to engage with other people in the NMO community and recently I was able to meet someone local in Perth! I’ve learned that life is short, more specifically, Life in this body is short.
Recently, I started to feel like myself again. I was working in a job that allowed me to work with my disability. It was easy, not stressful physically or mentally and it gave me purpose. It was perfect for as it enabled me to keep working, but it was boring, and it wasn’t me. I realised that for as long as I worked there I would see myself as ‘sick’. Now that I’m living the way I want, and working where I want, I don’t feel sick. I don’t worry about the next relapse as much as did. I see the world differently now, as I am.
NMO is a very rare disease with very little known about it. I read a new paper recently which describes the average time between initial event and serious relapse as 21 months. I am going on 17 months. I’m scared of that next event. There are alot of what ifs? What if I’m paralysed? What if I end up ventilated? What if I die? Or what if it doesn’t happen for 15 years? I could live normally for the next 15 years, it’s possible!
So in the lead up to the Gibb, I am feeling good, I’m training hard and just generally making the most out of the time I have in this body. Working in the Pilbara has been so good for my mental health. I’m back doing what I love. How awesome is that! How could anyone not love this country?
We are fundraising hard and we have been lucky enough to have support from some awesome companies, like Aussie wipes who have provided enough baby wipes to keep us clean on the ride. Nothing cleans off pindan tan like Aussie Wipes! If you could spare a penny or two to help the Kyle Andrews Foundation the link is below:
“Life will break you. Nobody can protect you from that, you have to Love, you have to Feel. It is the reason you are here on Earth. And when it happens that you are broken, or betrayed, or left, or hurt, or death brushes near, let yourself sit by a apple tree and listen to the apples falling around you, wasting their sweetness. Tell yourself you tasted as many as you could.”