Warning: This article contains graphic scenes.
I’d just finished Year 9 and was instructed by my boss to teach the new girl at the supermarket how to unpack boxes after the weekly delivery arrived.
Squatting down in the tissue aisle I pointed out with my right hand, to the girl on my right, the code on the box that needed marrying up with the code on the shelving.
She could not see, so she moved to my left. As she squatted down, she sliced my left hand, which was resting on the left corner of the box, from my wrist to the base of the thumb with a brand new industry approved packing knife (only just arrived with the latest delivery).
It was Tuesday, December 14, 1999, 6 pm.
At first, I felt nothing. The new girl was screaming. I tried to calm her down, not understanding why she was so hysterical.
Jane less than 3 weeks before CRPS 27 Nov 1999. Source: Supplied
I’d been concentrating on showing her the codes, so I had not seen a thing. Then I noticed a violent spray of blood emanating from my hand every time my heart pumped. I found it extremely odd, it did not hurt, and so I assured the girl I was okay while continuing to attempt to calm her as the rest of the staff flocked to the commotion. A large pool of my blood now anointed the floor in front of the tissue aisle. As I assured my boss I was okay, I fainted in his arms.
My boss called my mum and she took me to the local hospital. It was a while after waiting for my mum to arrive, about half an hour after the injury, that I first felt pain.
At the hospital the nurse consulted with the doctor on the phone. Due to the location, stitches would do more harm than good – it would have to be steri-stripped for weeks and I’d have to keep my hand very still to prevent the steri-strips popping off the 4.5cm long gash that exposed a metacarpal.
Time passed, but instead of getting better, the pain continually got worse. I wrote it off at first, telling myself it did not make any sense. After all, pain lessens as wounds heal, not the other way around. After nine months trying to ignore the pain, my mum found me balling as I tried to touch-type my homework. She immediately booked me in to see our doctor.
Jane Forbes as a young woman in a brownie uniform. Source: Supplied
My doctor thought, worst-case scenario, I might have Complex Regional Pain Syndrome (CRPS). To rule it out, I was to have a nuclear scan and take it from there. A different medico who interpreted the scan assured us it was a broken wrist and recommended a plaster for a fortnight and the pain would go away.
The plaster came off, and the pain was far worse than before. Not only had the pain not disappeared, the constant burning pain like my nerves were always on fire had intensified. The pain had spread too. Now no longer isolated to the hand the whole limb was affected. A slight breeze touching my skin in the car park had me crying in agony.
The base burning pain is always constant
My arm felt like a lead weight without the sling to support it. Mum promptly took me to an orthopaedic surgeon who took one look at the scan and said it was CRPS.
The worst thing for CRPS is no movement. I’d had a fortnight without it. I had to leave class and do five minutes of physical therapy exercises every hour on the hour to try and prevent my hand from becoming the classic CRPS “claw”. The exercises cause more pain plus extra schooling to catch up on.
I was in agony and exhausted. Everything made the pain worse. At first there appeared to be no rhyme or reason as the pain intensified and I started to cry.
I later learned by experience that every external stimulus: noise, weather condition, clothing on the skin, movement, touch, being bumped etc, is interpreted by the affected nerves as different types of pain.
The base burning pain is always constant (measuring 42 on the McGill pain index – more painful than untrained childbirth). Add to this additional pain that feels like your muscles are crushing your bones to powder, something chewing through your muscles, intense electrical pain, pain like you are being constantly bashed by a baseball bat, and your limb is going blue or red; with red or white dots. It feels like something from a nightmare.
I was in agony and exhausted. Everything made the pain worse. At first there appeared to be no rhyme or reason as the pain intensified and I started to cry
I had no trouble understanding how sound waves traveled. I was the only student in my Physics class who did not have to visualise strong and weak sound waves alternately radiating out from a sound, like ripples when a stone is dropped in a pond – I could feel them, the baseball bat bashing pain.
Teachers who had once seen me as intelligent now treated me like I was a cog down. Both students and teachers made me the butt of jokes. Other teachers would thump me on the affected limb, thinking they were helping even though my mother had specially written to the school to not touch me under any circumstance. A pat on the arm felt like a whack on a wound.
It got to the point where I had to leave school as students would constantly bang into me.
I was in agony; sleeping, eating, going to doctors’ and school, often falling asleep in class due to chronic exhaustion, often not going to school at all; sleeping a “sleep of the dead” from which it was impossible to wake me.
All the things I loved the most disappeared. Rowing, a sport I’d fallen in love with was now not an option. My dream of competing at the Olympics just like my great uncle had done in 1964 was nothing more than a dream now.
I’d not spent a cent of my earnings from my first and only job at the supermarket, saving it all for my education. But the plan of going to university to study medicine and later forensic pathology, had now evaporated.
I felt stuck between the medical world who understood what I was going through and the rest of the world who did not understand nor care. My school had been informed of things that would make a difference – but they were never implemented. I was given extra time to complete course work and exams. Teachers would pack up tables banging metal on metal during my extra time. So instead of extra time, I had extra pain, that took weeks or months to try to get back to where I was before.
One neurologist told me: “I could prescribe pain medication but it would not get rid of the pain – in 10 years you’d be no better pain wise and have the side effects from the pain medication as well.”
You feel completely isolated and alone
Leaving school option-less and locked down at home, the situation did not improve. Understandably, construction work happens and the noise and the crippling pain that comes with it. Mowing lawns, likewise. Loud music and parties are a completely different story. Life is a living hell. There is nowhere to go, no possible way to escape. You are knocked out for months, the resulting debilitating crippling pain so unnecessary.
You are a prisoner in your own home. When you try to go somewhere quiet, noise and bumps follow. Having a job is impossible, you can’t work if and when you are up to it – pain can change on an hourly basis. Likewise, study or anything with a deadline.
You feel completely isolated and alone. You avoid telling people about your CRPS and fear it will be used against you.
Unfortunately, nerves take decades to heal – if ever, but I’m hopeful that one day CRPS will feel like a surreal memory with its constant burning pain.
This article is an edited extract of an entry chosen from the on the topic of Between Two Worlds.
Jane Forbes wishes to draw attention to debilitating disabilities like CRPS and improve community understanding, accessibility to services and quality of life for sufferers.
