PDF to research paper thanks to https://www.helloasso.com/associations/association-du-syndrome-nail-patella
can be downloaded here:
PAPER
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Resilience diary - pain today: 7/10. Photo: "Mêşśÿ"
I seem to have hidden it forgotten the arguments that led to my moving out for a few months a few months after my sixteenth birthday maybe towards summer. I had become rebellious or whatever name one gives to the teenagers who seem to reject all help thinking they know best. Maybe i wasn't that bad and i was just like any other teen, regardless I spent three months logging on my mates bedroom floor until that got to much for both of us and we needed it our own space. That freedom i felt though is weirdly still with me, it's something i learnt or was given an option at some early stage in life and i desperately wanted to do it on my own regardless how stupid it may seem i had to understand the world a certain way. Now i beg help for nearly everything. I'm a useless blob most of the time trying to stop wincing in pain. It's been so heavy recently i spent over twelve hours passed out and/or asleep. First couch then bed, now off to get blood tests then back to couch before hopefully going for a swim. Friday get needle that should help, trying not to but secretly am counting down. I'd like to breathe normally again.
#project117
#adolescence
#teenage
#memories
#challenge
Resilience diary - pain today: 7/10. Photo: "Šűbṯłê"
Looking back on my teenage years recently I'm clueless as to how i had the energy however when viewed from my teenage self I wasn't tired. This month has been wonderfully busy for me as I pushed myself out to try a new exhibition as well as be a keynote speaker for a charity auction fundraiser for disability ngo's which was amazing and teaching me new skills and refreshing old ones. I've been to Italy where i took this shot on an exploration of Florence and the incredible artworks there. I did some workshops where i share my ideas around self advocacy with a hidden disability. And i started exercising for the first time in five years and I'm so bloody sore from it. But in a week i should get a needle to reduce the pain in my broken spine and then i can hopefully build some strength back to be fit enough to stay fit with to live as long as i want to. I'm having a great life right now, better than sixteen year old could ever imagined. I've no idea where tomorrow takes me, I've got some basics to sort out for the long term such as financing my lifestyle, but mostly i want to keep enjoying what i can and getting through what i must.
#project117
#reflect
#subtle
#time
#change

https://www.bennyjartist.com/speaking
#project117
#speaker
#publicspeaking
#workshops
#disabilityadvovate
Resilience diary - pain today: 6/10. Photo: "Ğöłīâṯħ"
The age gap between my brother and I is three and a half years. As i turned sixteen he was just entering high school, a different one to me and we started living very different lives. We fought a lot as kids but as teens we connected only at family things and otherwise was off doing whatever extra curricular thing entertained us. I don't even know half of what he did as was too focused on my own busy schedule. We were always mates though, close enough to know the other was there when needed but otherwise was not prioritised. I don't know how my parents juggled such varied schedules and activities, mine focused on scouts and temple at the time, my brother was doing rugby and tae kwon do, probably why we stopped fighting to as he was to fast for me even if i was bigger. I lost touch with most of my family over the coming years as i struggled with life and all its complexity. I was young and eager to find my way which initially meant making a lot of mistakes on my own before finding an easier way. My brother helped out at those later times, giving me opportunities when i was down. Our relationship remains despite my nearly twenty years overseas. He's still my favourite and i love him deeply.
#project117
#brother
#fight
#different
#love
Resilience diary - pain today: 6/10. Photo: "Ŵěáṯħēṟ"
Sydney was a huge city growing up with my knowledge of it limited primarily to the north east. A semi circular shaped city with the other half of the circle occupied by the Pacific Ocean which drives much of the weather systems that guided my life. From the ocean swells and wind swept waves where i first felt free swimming and surfing in its offerings to the southerly Buster's, huge storm cells that would crash through a summer afternoon drenching everyone and cooling the place down. I could navigate by smell as the sea was always to the east which made it easy to navigate regardless of the time of day or weather. I was an outdoor kid who found ways to live with the weather rather than fighting it. My favourite times were the big storms though. With crashing thunder and rain that drowned out every other sound. Sometimes I'd be camping as the world turned upside down ands all i could ever do was smile. It was Glorious being in the moment with all one's focus on the here and now. I forgot my pain and could just soak up the roar power around me, an observer with no choice but to observe. I still love standing out in heavy rain feeling the smashing of droplets into my arms face and body. It takes control and you just have to let it. It's a break from all other times.
#project117
#weather
#predictions
#opportunity
#hectic