Resilience diary - pain today: 5/10. Photo: "Ħøçüś Pøçüș" By year eleven, aged sixteen, I'd had pretty much had all the training needed to navigate the deep world of medical care. I'd experimented with some alternative medicines and was met with more offers of solutions to my unsolvable disease and symptoms that triggered my gut instincts to run and run i did eventually. I think the power of the mind is astounding but it can't change physics and despite all the hope and energy chanted through my body, nothing will change my dna or build. I gave up on all medical interventions that weren't absolutely necessary and got on with living within a body no one knew anything about so it was up to me to figure it out. I haven't yet but an starting to try. I've ignored my body for as long as i could as all it has ever given me is trouble. If my head wasn't so determined i would of slowed down along time ago. I don't want to slow down anymore but there minimal i do do is so exhausting. I'm adjusting but the anxiety that comes with any plans, short or long term seems to grow as i get older and my body throws up more confusing signals. #project117 #hocuspocus #myths #raredisease #choices

Resilience diary - pain today: 5/10. Photo: "Ðäŋċě" Our year eleven school camp was a week away at the snow. Well with it taking a day there and one back the actually skiing part was three days but that's better than none and better than schoolwork. The snowy mountains, the name given to the occasionally snowy bit of rolling hills are about six hours drive south of Sydney passing by the nations capital to the narrow range of hills capable of such entertainment. At the time i was still between skiing and snowboarding but found skiing better for my legs as just had to hold a squat and avoid turning. It would be a few years before i came across my mini sized skis that i still use today. The camp came and past, with some memories of rewiring an alarm clock and my first memorable photo but otherwise a blur of action like most others of this age. I was dancing through time now. #project117 #ski #schoolcamp #dance #spin

Resilience diary - pain today: 5/10. Photo: "Ťǒpş" After six or seven years in scouts i was pretty self sufficient when it came to organising things. The training was brilliant as it was hidden under the cloak of immense fun. I was no good at paperwork there though either and never bothered with the quite prestigious queen scout award. I occasionally got things signed off as i needed them to do certain activities to show a certain skillset. I had learnt a bunch of survival skills and was trying to apply them to everyday life. Work, friends, family. There seemed to be a connection and it was communication. I was improving mine and benefitting from it. The more people i talked to the more i understood how to live my life, choosing the good bits and learning to navigate the bad. Being inexperienced is so scary. #project117 #tops #hiking #scouts #views

Resilience Diary - Pain Today: 5/10. Photo: "Fřèé–Ŵíłḻ/Fățę" I've kinda always had a choice to either pretend to not have a severe disability though clearly i was it didn't stop me trying. My fist ten years is full of memories that returned to me this past five years. I'm older now and slowly am accepting my disability as severe though i achieved a lot crying through pain in silence whilst pretending I'm not. I still do, my new wheelchair is giving me new opportunities and if u get my fitness up i have plenty more life to explore. It's challenging and i seem to always go the hard way and i fail a lot, but i'ved lived by walking through open doors and the more doors to choose from the wider the options and then you feel free, free from the chains of your body, with choice comes a feeling i chase, one of independence. I need more help these days and getting better at asking as there are ways to do both. Mainly i need to find a way to exercise that doesn't result in debilitating pain, I'm going back to swimming... it's how i started, before i could walk i was swimming, so we try again. #project117 #will #fate #choices #disability

Resilience diary - pain today: 4/10. Photo: "bŁůṟ" My memories from seventeen to twenty one are blurred and the chronological order mixed. I was having the best time of my life, loving how i wanted to, stubbornly and fairly standard teenage rebellious behaviour within fairly safe boundaries. There were groups of other young men my age who were getting involved in gangs and a bit of petty crime and violence which i had no interest in and instead avoided or when necessary talked my way through things. Anyways this photo reminded me of my failed attempt at riding a scooter for the first time. I thought as i was good on a bicycle i'd be fine on this but sadly for my friend who was the manager of the Pizza Hut that owned the scooter which i managed to scuttle in the carpark within 10 seconds of being on the thing... I never tried a scooter again. #project117 #blur #growingup #lovinglife #storytelling