SearchAdapting my career and passions in light of living with EDS
Artist and Sculptor, and EDS UK Ambassador since September 2022, Jacob Chandler shares how he has adapted his career and passions in light of living with EDS.
Have you had to adapt how you work because of your EDS?
I have found my work because of my EDS. I originally went to study architecture sculpting was my dream but pragmatically I went to university to study architecture. After several allergic reactions, walking around the city to draw became impractical. It got to the point where I moved home and my Dad was driving me an hour each way for lectures in which I struggled to absorb any information. After a week of this, I had to call it in and was left almost bedbound. In my recovery I sculpted, sculpting became hugely meditative for me, I could spend as much or as little time as I could manage but it gave me a sense of accomplishment, a tangible result at the end of the day. With carefully managed daily activity I was able to build up my stamina and strength. It’s a constant balancing act but I am always learning how to live the fullest life I can, even if that means taking time out to recuperate.
The way EDS directly affects my work now is in the form of finger and wrist braces that I wear when I work. I also custom-make my own tools and grips to reduce strain on my joints while working. Careful physio and being conscious of how my joints sublux have enabled me to build muscle to support the weaker joints in my hands.
Jacob Chandler, Ambassador for EDS UK
Does EDS influence your art?
My health deteriorated at a point in my life when I was hugely active. I went from going to county trials for rugby, doing extracurricular drama, and being all-round sporty, to all but bed bound almost overnight. In my sculptural work, I aim to create physical excellence. The extremes of power and precision. I feel like this is my way of consoling myself, despite not being able to give one hundred percent to sporting pursuits, I can still create a semblance of physical perfection, almost a rebellion against my own adversity.
It hasn’t been until this last year that I have been open about my health issues and I’ve already had some exciting ideas about how to create a piece about these that I hope other sufferers of EDS or other chronic conditions may be able to relate to. It will be my form of self-examination. Fundamentally though, I wouldn’t be sculpting if it weren’t for my health issues, they’ve led me down the path I am pursuing and I couldn’t be happier about this.
One Giant Leap for humankind by Jacob Chandler
Have you used any of our services (e.g. information from our website, our helpline, online support groups)?
I have used the website particularly when my condition flares up and I need reassurance that other people are in the same position, we’ve all been there, and we all know what happens but it’s nice to almost be given permission to take a step back from life and recuperate. I’ve also taken part in a support group however I found this a little intense and find reading through the resources on the website the way I can come to terms with my condition. I’ve really struggled to open up about my condition, I have tried to hide it and still to some extent do. I think this is why the support groups are challenging for me.