By Amarpreet Kaur
I made it three months into the first year of my Bachelors degree when a disc in my neck succumbed to the pressure of swelling and prolapsed to compress my spinal cord. I had been diagnosed with a degenerative spinal condition four months earlier, but that was not the anticipated prognosis. My spine was supposed to have held out longer. Nonetheless, undeterred by the unexpected turn of events, I was determined to make it to the end of my first year at the very least.
I had no plan but I knew three things: I wanted a degree more than anything, I was willing to keep working towards achieving my dream for as long as I was capable, and I did not want anybody who did not need to know, to know. Losing the function of both my arms if nerve damage continued to progress would be hard enough without an audience.
Fortunately, my personal tutor was a gem. She listened to my ramblings about the uncertainty of my condition, the ifs and buts of what could happen, my desires, and current capabilities. After listening intently, she processed my cascade of information into a pragmatic plan. First and foremost, I needed to update my disability advisor. She reassured me that if I definitely did not want my other tutors in the department to know about my condition, my decision would be respected. However, as she was planning for maternity leave, she really did need to hand me over to another member of staff. I thought long and hard about everything she said and took most of her sound advice on board.
My personal learning plan was promptly updated. My disability advisor ensured that contingencies surrounding my learning and assessments were in place. Being as stubborn as I am, I did not want to use any of the back up plans she advocated, but it was a case of needs must and I had to let go of my ego. I was dealing with a degenerative condition and deep down I knew I had to overcome my internal denial at some point.
Due to the uncertainty surrounding my medical circumstances, I sat my in-class end of year exams slightly early. I wrote my first exam by hand against recommendations and available provisions. I was riddled with extreme pain afterwards and could barely move for days because of the strain that hand-writing my exam had put on my spinal cord. Having learnt my lesson the hard way, I completed my remaining exams on a computer in a room with other students that were also utilising minor adjustments to accommodate their various needs. The adjustment was not a big deal, the only dilemmas stemmed from my own ego, denial, and stubbornness.
I walked out of my last exam and ran straight to my tutors’ offices to share my joy and relief at having completed the year. My health continued to see-saw but I passed every unit with a first that year. I have no doubt that without the unwavering support of my personal tutors and disability advisor, I would have struggled, both mentally and physically, to make it to the end of my first year.
My tutors and disability advisor were my rationality and sanity in a chronic battle with an undeterminable ending. Having suffered a minor psychological breakdown over not being able to trust any of the neuro/spinal consultants I had been batted between in Manchester, I eventually found a remarkable consultant in London who agreed to take my case. As a result, I spent almost the entirety of my second year between cities undergoing regular neurological tests, scans, and X-rays, before finally having surgery during the summer break.
I tried to keep most of my medical care confined to weekends, but when missing lectures or seminars was unavoidable, my tutors caught me up during their office hours. I was more balanced during my second year. I was more comfortable with talking about my situation with some of the staff that taught me. I still omitted most details surrounding my condition, but I was happy sharing pertinent information that would enable them to support me during pain flare-ups and unexpected absences.
My second year was also aided by a digital recorder so I could listen to missed lectures at my own convenience, i.e. when I was not medicating myself with half a pharmacy just to be able to sit up, let alone walk. I completed my second year with my personal tutors as crutches, and with a first in every single assessment. Needless to say, I was delighted to have made it through yet another year so spectacularly, despite the challenges and toll my degenerating condition continued to present.
Most of the third and final year of my degree was completed remotely, away from campus, in the confines of my bedroom. I conducted my entire dissertation research and wrote my dissertation during recovery from major spinal surgery, under the influence of many painkillers and daily therapy. I barely missed any teaching though, and still managed to pass every unit with a first (again).
I was enabled to live my dream of completing my degree whilst managing a chronic condition because my three personal tutors and disability advisor never ceased to listen, support, and accommodate me. To this day, my first-class BA (Hons) Sociology degree certificate from Manchester Metropolitan University, achieved with an average of 77.5, remains my most prized possession, pride, and joy… and I even have a Masters of Philosophy in Sociology degree from the University of Cambridge added to my achievements now.
Amarpreet Kaur is a PhD Candidate in sociology at the University of Cambridge. Her research is focused on reproductive futures with genetic editing in relation to disease and disability in the UK. She has written about her condition in the ‘Chronic Chronicles’ segment of her website and tweets as @lioness1992.