“Write what you know”, has been uttered in encouragement ever since I started writing professionally. Ironically, the subject that I know all too well is the one which I find the most challenging to write about. The difficulty lies within its inexpressibility and resistance to language. However, in an attempt to look forward to life after lock-down, questions about my eligibility to land an interesting job in full-time employment, under my somewhat abnormal circumstances, have become more prevalent. In light of my search for career clarity, I thought it was about time to talk with radical sincerity, about the attributes that I have learnt by overcoming adversities.
I am one of the 28 million adults in the UK living with chronic pain – a silent epidemic during a global pandemic. Nationally recognised as a disability under the Equality Act 2010, my chronic pain makes me a disabled job-seeker, a potential ticked box in a company’s diversity quota, and an individual who wants to work.
Realising that I had a disability was a hard pill to swallow, as I had absorbed the societal mindset that being disabled was a weakness. After all, the word “disability” carries the connotation of “inability”, whether or not such an assumption is true. Almost unconsciously, I have spent years thinking I am weak because of my health challenges. To counteract this, I struggled against the current, working hard to prove my intelligence, ambition and capability to those around me.
I was 17 and studying for my A-Levels when I got told that I was suffering from two life-threatening conditions (Chiari malformation and Syringomyelia) that could leave me paralysed if I didn’t have surgery. I remember looking at my neurosurgeon in disbelief as he showed me an MRI of my brain – the cerebellar tonsils had herniated 11mm through my skull and into the spinal canal, which had blocked the flow of cerebrospinal fluid, causing fluid-filled cavities to flood my spinal cord.
The operation was successful but the damage to my spinal cord was irreversible. I had developed numbness and tremors in my hands, widespread neuropathic pain, scoliosis, Hypermobility Syndrome, allodynia and nerve root damage in my rib cage, migraines and dissociative seizures. After recovering from the initial surgery, the challenge of managing the barrage of symptoms began.
Armed with a gnarly post-operative scar, I went back to college and retook my exams. In the summer of 2013, I moved to Somerset, having secured a place at Bath Spa to study a BA in Creative Writing and Drama. While studying, I heard that a close friend from home had passed away and the year that followed was my ‘rock bottom’, as I bore the brunt of the psychological effects of this newest trauma. My physical pain fought hard to compete as my mental health worsened and I ended up in a vicious cycle, which ultimately put an end to my studies.
It was at this point when my parents reached into the detritus of my life and through words of support, they helped to recover a sliver of determination among the rubble. Their help enabled me to get a freelance job as a writer at a magazine and land a place on an NHS residential pain management course in London.
I had started the course heavily medicated with antidepressants, opioids, NSAIDs and steroids all working hard and failing miserably at reducing my pain levels. In the space of four weeks, I left my flat in St Thomas’ Hospital, free of those painkillers and instead, equipped with a mindful approach to pain management. After what had been an intensive month of teachings from doctors, nurses, physiotherapists, psychologists and occupational therapists, I realised that it was my mindset that was holding me back from being independent and happy.
Four years later, I hiked the West Highland Way trail in Scotland and later took a marketing job in an apparel company in Ghana. As I sat in a moment of serenity, with friends underneath the tallest waterfall in West Africa, I realised that what I had experienced wasn’t a weakness to my character, it was strength in its truest form – I had learnt how to be resilient in the face of adversity.
I am now 25 and nearing the end of what has been a difficult and far from linear recovery. I remain under the care of a local pain-management team who organise regular steroid-injections, nerve blocks, physiotherapy and mindfulness sessions to keep my body and mind as healthy and stable as they can be. I continue to work as a freelance writer and I have an irreplaceable network of friends and family supporting me as I navigate becoming independent.
It has become obvious to me that to survive in this world as an “able” person, you need tremendous strength and to survive as a disabled person, requires the same strengths and a lot more, including a Herculean dose of resilience. Our disabilities may make our bodies prone to weaknesses but as the insufferable saying goes, “what doesn’t kill us, makes us stronger”.