Benny J Artist

WHO AM I?

I was born in Australia in 1983 and since 2008 have lived between primarily in Germany and Luxembourg. You will normally see me wearing sunglasses and a cap, camera in hand or on my back, exploring the world or more often than I wish, a Doctors waiting room.

I have a permanent disability that causes among many other things, severe chronic pain. The disability is caused by my having Nail Patella Syndrome, a rare genetic disease that causes deformities in the bones, joints and nails, most obviously seen in my knees and fingernails as well as chronic pain and various internal organ problems such as Glaucoma, Arthritis, kidney failure issues.

Until recently I was able to mostly hide my pain and disability from both myself, and everyone around me. However the older I get the more crippling the symptoms become. Most noticeably intense chronic pain. I have had to stop work due to my physical limitations however am incredibly motivated to not let this stop me living, as such my Art is my work now, something I can do for life, which I am putting under the banner “Project 117”.

In my life I have worked as a paper delivery boy, supermarket worker, Sydney Bus Driver, Deckhand on a container ship in Papua New Guinea, Pub Manager in Germany and various bank roles over 10 years in Australia and Luxembourg. Since 2022 I have transitioned to my final career path, as an Artist. Unable to work full time any more, I started to manage my pain through various art forms including woodwork, drawing, photography, poetry, stand up comedy, philosophy and writing.

In 2023 my professional artist career began with the opening of my first exhibition, permanently in my main Doctor’s waiting rooms, Dr Caroline Marx is critical to my long term health care and is such an honour to decorate her waiting rooms. Then it has been whirlind of activity as on n 27th February 2023 I opened my first open to the public exhibition, with the support of the MunnFTSE Work Rest play centre in Luxembourg city I exhibited there for 6 months before getting the opportunity to build my own gallery, see the “Gallery of Survival” page for more info. I now run workshops and exhibit permanently at my Wasserbillig residence, with a view to grow and exhibit other artists in the future.

Part of my art includes performing written and spoken pieces, explaining my background, who I am, what my art is about and what I am trying to achieve. Currently I have had 4 sell out shows with plans for regular events/performances. Keep an eye on my social media for up to date details. For the current show “Embracing Life” Please click here for dates and tickets.

If you want to follow my story please follow my daily pain diary on Instagram and Facebook, links at top and bottom of page, I post every day and have done so since April 16 2022 and it would be great to have your support on by following this project, among any others

Thank you for your time, please feel free to explore the website, everything has been done by me, from the Art to building this website and everything in between. Lastly I hope you are able to connect to some of my work, please do contact me if you wish to discuss anything ideas or projects you may have that I may be able to get involved, I love to learn.

Benny J

Embracing Life

A lIttle bit more about me…

Exploring life through art.

As a former banker, salesman, bus driver, container ship sailor with over 20 years of customer service work. I have had a varied professional life. Permanently disabled with a deteriorating condition that involves increasing pain throughout my whole body, I explore my emotions and feelings through art.

This new direction in my life is in order to redirect the energy and frustration caused by my physical situation. I have spent a lifetime searching for what I want to do and what I do is:

Showing the world how to adapt life to make living easier for everyone. I will do this tyhrough Stand-up comedy, bespoke poetry, creative writing and philosophy, drawing, painting and photography as well as decorative and functional woodwork. I enjoy drawing and writing about my pain and experiences. Some people find the coffin designs a little strange, I find them soothing and a way to bring some fun to a sad eventuality of life. I look for fun in everything due to my constant never ending pain. So distracting myself with fun things is something I live for.

I am able to be commissioned for any of my work, please feel free to contact me to establish a relationship and see how we can work together.

I look forward to sharing more of my story with you.

My disabilItY:

Nail Patella Syndrome

My disability is called Nail Patella Syndrome or NPS for short. It is a genetic disease that involves the mutation of the LMX1B gene. The symptoms vary in patients, and there are not many patients to study as this is a rare disease. My symptoms are most easily seen in my fingernails and knees.

I am missing the nails on my thumbs and index fingers, with the other nails also deformed. I am unable to use a pen properly and any extended writing or use results in cramps and pain in my arm due to the lack of strength provided by missing nails.

My kneecaps are very small, nearly missing in my left knee prior to surgery when I was 9 years old. The scars are from the 3 major knee reconstructions I have had at ages 9,10 and 11.

Visibly I also stand on my toes like a ballerina, making for some interesting balancing issues as well. I have short calf muscles and dislocating joints which combined with a bent spine creates a body in constant physical stress.

I also have extra bone growths on my hips and my elbows, that can be seen by a slightly more pointed bone structure in these areas. I suffer from arthritis in elbows and shoulder joints.

I also suffer from Glaucoma (going blind), an enlarged aorta and digestive issues, all related to NPS.

As I get older, the impact of these physical issues are impacting my life more and more, resulting in significant pain and reduced mobility. I am, however, as active as I can be when my body allows me.

Any questions relating to my disability and its impact on my life are welcome.

Daily Pain Diary from instagram

Resilience diary- pain today: 6/10. Photo: "Şħípÿǎṟḏş" Occasionally I would join dad on one of his work trips up or down the coast to one of the most intimidating places on earth, a shipyard. I remember one up near Newcastle that was just the biggest piece of infrastructure I'd ever seen. The docks had dozens of ships and boats that ranged in size from tugs and big little boats to container and other cargo ships measuring hundreds of meters long. Dad in this job would do the annual or other periodic checks of these behemoths signing off on their legal and safety right to sail. I didn't know this at the time, I was just bored and didn't understand how incredible dads work was probably because his level was beyond phd level and I was a 12 year old who couldn't count. The ships were mostly out of bounds for me though and so usually I'd be left on the bridge or galley to occupy myself with no book or phone for a few hours as dad did his thing. I never connected to ships the way dad did which is a bit of a shame as no one knows them better and has I ever managed to study would of had a great teacher. I am inspired by his passion for them though, they've given him a full life with incredible stories, all one can ask for i guess. #project117 #shipyards #bored #cold #huge

Resilience diary- pain today: 5/10. Photo: "Fłåṯ" One of my first hikes was in the blue mountains and the blue gum forest. The blue mountains are unique in their formation whereby most infrastructure is on the top as the valleys are mostly dead ends and traps. The hike world start by train from home, changing in the city for a line out to Blackheath where a short walk of a couple of km's brings us to the start of the trail. Short at about 14km the hike takes two days because 12 of those km are either falling down one side of the valley or attempting to scramble up the other side. It's hard work and the downhill was always my least favourite as would cause my knees the most pain whereas up hill was just stamina, which i had back then. The campsite was at Acacia flat not far from the forest of blue gums. Coming home after a trip like that is like leaving a dream. The bush and nature a place to find peace with everything. #project117 #nature #views #hiking #childhood

Resilience diary- pain today: 6/10. Photo: "Ħēâvëņ&scaron;"

I enjoyed getting older and have always wanted to be old though I've never really questioned why. I guess i see it as a measure of success in what is a form of a surviv

Resilience diary- pain today: 6/10. Photo: "Ħēâvëņš" I enjoyed getting older and have always wanted to be old though I've never really questioned why. I guess i see it as a measure of success in what is a form of a survival game and being old is a way of winning the game though I'm sure my mind will change on that if i delve into the matter. What aging also gave me which i thrived on, was new ways to view the world. I was starting to watch the news on tv sometimes and read the weekend paper and starting to see and hear about things I've been lucky enough to never experience such as war or dictatorships. I really started questioning religion the older i got as it just didn't make sense to me, i got much of it and edited the community bit but a year out from my bar mitzvah I was being drawn away from temple and into the bush with scouts. That's where i fell in love with life and things started to make sense to me. I had a place where I could safely test out ideas whilst doing adventures, a lucky time. #project117 #beliefs #heavens #thoughts #community

Resilience diary- pain today: 5/10. Photo: "Čōñṯǐŋûõǔş" Today is the beginning of the fourth year of this diary. For someone who tends to start and stop things on a regular basis in quite proud I've kept this up for the past 1461 days. I have no plans to stop as it has become a nice anchor to my day and I'm enjoying looking back at my life and trying to work out how i became who i am. I would love to find out how I have been mentally sitting when I've needed to be so i can both use it more often and to share it however i feel it's really an independent thing that one needs to build the right environment around them to give the opportunity. The best thing i learnt from my youth was (eventually) to not care what others say about me, i can't stop them, so just do me and what's best for me and surround myself with people who support that and enjoy that life. I'm interested to see where this diary ends up or talks about but so far the journey has been extensive 😂 thx for those joining me on the way. #project117 #anniversary #time #continuous #diary

Resilience diary- pain today: 5/10. Photo: "Měḏíțâṯīòńş" I think what i enjoyed most as i fell down the philosophy well was the multiple ways to answer the same questions and they could sometimes all be correct even if they contradicted each other. By age twelve I had worked out that some solutions are not the only ones and the idea that a whole world existed where questions could be explored without end seemed fun to me. I started to have all sorts of wild thoughts about meaning and then got thrown a curve ball as ethics was thrown into the mix and that just amplified my thinking. I started having trouble overthinking it going to deep such that i would scare myself at the brevity and depth of what i was feeling that could not be out into words. I loved this freedom of search without limits except those you restrain yourself within. That idea spoke to me as all i seemed to do is figure out how to get my body to do what i wanted even though it didn't. Those deep thoughts would sometimes go to far and I'd temporarily be paralysed from the existential thoughts rushing around me but gradually i got used to the signs of going to far and then distract myself out of it before trying again later. Eventually life got too busy and filled those thoughts with other things but recently with time to breathe I'm returning there and it's so interesting. #project117 #philosophy #thinking #answers #questions

Resilience diary- pain today: 6/10. Photo: "Ėŋčōǔṟáğęmēńṯ" Where i think ive been most lucky in life is how from the start I have been surrounded by people who have encouraged me to be the best person i can be. I have been loved and cared for for as long as i can remember which provided me with the opportunity to build the resilience i needed to enjoy a life with. I wish this applied to everyone as there is enough to deal with for anyone and to be supported through those times is crucial to one's health. I have great family friends, those friends of parents that really become uncles and aunties, that have always been there and many still are as they read this diary. I know it's been said that it takes a village to raise a child but i don't know (though pretty sure I'm not the first ) to think it takes a village to become a person. As i got older and hit my teenage years i was starting to be ok absorbing these new understandings, spending all my time building relationships though not intentionally, i was working out that if someone doesn't like something about me i didn't have to give it any attention or even acknowledgment. This idea grew over the next few years until i had the confidence to try things on my own. Rovers was a great time for that. For now though i was still a lost little kid being stuffed full of hope from everyone around him. I felt pretty good. #project117 #encouragement #support #sharing #satisfying

Resilience diary - pain today: 6/10. Photo: "İŋțęñțïōń" I have never had any natural ability or even awareness sometimes, of being tidy or organised. Mum would regularly call me lazy which looking back i totally get as i haven't really changed much and can see myself thinking the same occasionally. That word would become a trigger for me as no matter how hard i tried to meet whatever the requirements to not be lazy were, i was never scout till meet them. My excuse or theory is to blame my physical limitations as the force behind my constant desire to leave chaos in my wake. There is hopefully some truth to that as it has always felt cumbersome to do anything yet if it's fun I'll be more motivated to push myself to do it and ensure it's aftermath whereas if it's not then why push and hurt myself for no benefit. Of course benefits are being missed but that's been my challenge for as long as i remember, how to balance everything so I'm feeling strong enough to continue. Reading epistemology as i began my teenage years was opening my mind to new thoughts and gave me some hope that even if there aren't any answers, the journey to find more questions was beginning to look amazing, i just needed more skills to find my way. Still searching, always. ☺️ #project117 #lazy #intentional #effort #limited

Resilience diary - pain today: 6/10. Photo: "Ćǐṟqůě" I met a lot of people in hospitals but most of the influence this has on me was the indirect interactions that taught me how we all want the same thing regardless of who we are or come from. This spilled over to my school world when i briefly befriended a fellow student who lived not far from me but who lived in a different world. The house was a mansion that never had anyone in it, the parents had other priorities than home life and my friend suffered. It was the first time i realised that home life differs greatly for everyone and though he seemingly had it all, he was hurting bad and struggling with it and it showed. It caused a bunch more questions as well, seeing a different kind of suffering. What i don't think I'll ever understand, is how we want the same fundamentals yet fight over one another in the name of them. I want to be physically and mentally comfortable yet at least physically this isn't possible, which leaves its mark. #project117 #circus #cirquedusoleil #stories #search

Resilience diary- pain today: 6/10. Photo: "Vōçåb" I had two foreign language classes to begin with at the Steiner schools. Both in hindsight quite difficult, German and Japanese. Learning a language from scratch in Australia i think is impossible as we have few if any places to live with the language. After doing both for 6 years i was an embarrassment to education, although possibly most of that is my fault, as couldn't speak either though could count and remember a few basic sentences. I never thought I'd use any other language as never thought I'd leave Australia thanks to my scouting adventures showing me its beauty. I hadn't understood the many languages that existed in Australia at the time but that one i put more on the government and education system than my ignorance. I also dumbly thought that all languages were just different words for the same things said in the same order and so learning a Language was just a memory game, how wrong i was. Now i wish i found learning languages easier as they all give ways to thoughts, concepts or ways of thinking that don't exist in mine. The more i realised there were other ways to view the world, to think, to live, the more interested i became in it. Searching for ways to answer those unanswerable questions that i was having about life and all its confusing unknowns. Opening my mind up was and still is crucial to survival and enjoyment. #project117 #languages #lessons #practice #use

Resilience diary- pain today: 5/10. Photo: "Śúřřǒûńḏēḏ" I found water to be the most freeing and liberating for my body. To take the weight off my oversized feet always feels amazing. The relief starts in those pressed toes and shimmies is way up through my ankles, calves, knees, thighs and lower back before meeting the relief surging in from the my other extremities. With this in mind for my birthday around age 12 i got gifted a scuba diving course where i would find a world that provided my first real pain relief underwater followed by exhaustion out of it. The next couple of years i would dive any chance i got and 30 years later am still lucky enough to still enjoy it. I've now got my wife and best friend certified to which is even better. Today still feeling a little knocked out from my attempted exercise and trying to motivate myself to do it again, or something more than my knitting and cooking as a days movement. Still, feeling pretty up which is a big start. #project117 #surrounded #places #water #sinking