© Benny J / Instagram
Benny J was diagnosed with Nail patella syndrome, a rare genetic disease. On 11 May he will present a show in Luxembourg about how he learnt to embrace the life he was given.
Benny is in a great deal of chronic joint and muscle pain, suffering from a number of problems like arthritis, scoliosis and glaucoma as a result of his disability. At the age of ten he was told he'd be in a wheelchair by the age of 30. But he made it to almost 40 before having to use one.
However, he always knew that eventually he'd lose the ability to work a full-time job. Thus, he tried to soak up as much knowledge as he could throughout his life by working many different jobs such as bus driving or managing a pub.
Benny J and Melissa on the Home Stretch / © Today Radio
Now, he wants to share all of his experiences with the world.
Nail patella syndrome has a prevalence of only 1 in 50,000 individuals, therefore Benny went most of his life without really meeting anybody else who shares his condition, until he started a pain diary on Instagram. This has allowed him to not only virtually connect with people who have the disease but also attend a conference in France on the subject and meet 20 people face to face with his condition. It left him feeling "overwhelmed and joyous".
Dealing with the pain
To deal with his constant pain, Benny has taken up a remarkable number of hobbies. He’s started a knitting project, he creates his own furniture out of wood, he creates epoxy resin art of various types, he does stand up comedy, he writes poems, he draws and finally, he does landscape photography. "Because I’m in so much pain all the time, every single second of every day, I’m always looking for something to distract myself from that", he explained.
© Benny J
To display his many different art pieces, he created an art installment called "Gallery of Survival". With it he's set up permanent residence in the green office at the WRP in the city centre, an eco-friendly co-working and co-operative space.
On 11 May he will present a performance of his most recent show: “Embracing Life - How to adapt to an ever changing world". This will be a free event to make it as accessible to everyone. You can sign up for it through his website.
To get a sneak peak of this show, listen to his full interview with Melissa Dalton. He reads out one his poems and talks more about his fascinating life.