Written by Chloë Hope-Johnstone for tickle the imagination magazine, issue 19
The story of Lines & Squares goes hand-in-hand and is impossible to tell without our tale of chronic pain. In a crazy little turn of events, my pain started exactly fourteen days before Lines & Squares was officially registered and ready to go. With a sudden onset but no dramatic accident or event to report, we quickly began treating my abdominal pain as a virus of sorts. From one specialist to another, every test and scan came back clear, so we followed the same course of action for almost two years, until a kind and thorough dietician pushed for something more. Her call to action prompted a referral to a pain specialist and, although we had no sure answers as to why, we finally had a diagnosis that eventually rang true.
With no solid evidence, I wasn’t without my doubts; why should I agree to the same procedure that the same specialist had performed on my Gran at 80-odd? The idea of what was happening to my body defied everything I’d been taught about pain in my then 25 years. It turns out that our nervous systems are fussy and extremely complicated things and I think our initial, two year debacle shows just how little we understand them. In turn, while we’re blamelessly unaware, that misunderstanding naturally leads to uneducated responses and the facts are tainted by stigma. It’s that which makes chronic pain a very personal plight, yet one that is scarily familiar to a lot of people. Although they are of great comfort to my family and I, with 1 in 5 people suffering from persistent pain at some point in their life, unfortunately I’ve come to know far too many friends that share a similar story.
Five years on, all of the hospital staff have come to know me by name. I’m sporting some swish new hardware in the form of a spinal cord stimulator, which comes complete with a personal remote and charger to boost the battery implanted in my hip. Alas, we’re far from pain-free, but I’m armed with an entire team of health professionals that continue to help me, my family and so many others fight for just that. The life that I lead with Lines & Squares is a direct result of my family and those special folk and I can only hope that others are able to follow suit and reap the same rewards.