I suppose my story begins in earnest in 1991. I was a relatively healthy young woman, despite a few issues with my kidneys and I led an energetic life, where I was involved in a lot of sport and dance. I began experiencing severe cramp-like symptoms in the fingers of my left hand. My hand would spasm in a claw-like fashion and the pain was horrendous.
At the time I don’t recall feeling any pain in my neck or back, it was my fingers that were prevalent and noticeable. With each visit to the GP’s surgery I would be prescribed medication to relax my hand, but the medication never dulled my pain, instead it was gradually intensifying day by day. Over the next five years, through my marriage and the birth of my three children, I was in and out of hospital and the GP surgery with constant and debilitating pain yet I was being left to feel like I was imagining it.
I recall one visit to the GP surgery where I found myself sobbing uncontrollably, pleading with the receptionist for the Doctor to assist me because I was in so much pain. It was not until 2000, on my first visit to the family Doctor after relocating to the Huddersfield area, that I was referred for a non-routine emergency appointment for an MRI scan at the hospital.
In the meantime, I was visiting a physiotherapist who recognised quickly that there was something dreadfully wrong. This fast-tracked me to a number of consultants which eventually led me to a neurologist and finally a neurosurgeon. After a decade of Doctor’s appointments and pain, a weight drop of 2 and a half stone and an eventual permanent retreat from employment, I was diagnosed with a spinal tumour in October 2001.
I can’t recall how I managed to contact the Brain & Spine Foundation after my surgery, but I am incredibly grateful that I was able to connect.
The Brain & Spine Foundation has been instrumental in my new (normal) journey. Especially a special lady by the name of Angela who, from the beginning, has been a soothing, comforting voice with practical support to help me cope with what was transpiring within me. Each time I cried, she would (figuratively) wipe away my tears. Each time I had an episode, I knew I could call her and she would offer me valuable, practical advice. She would alleviate my fears and dampen my anxieties.
In May 2002 I finally underwent a seven-hour surgery to de-bulk the tumour growing inside my spinal cord. Prior to the surgery I honestly thought that within weeks I would be up and walking around and getting on with my normal routine. I had walked into Leeds General Infirmary and came out in a wheelchair a month later. I remember looking at myself in the hospital mirror and being horrified that I looked like a fraction of the person I once was.
Part of my new normal was embracing new hobbies. I had always loved writing and in 2007, 5 years after my surgery I picked up the hobby once again and henceforth my book “The Tapestry of My Life: A Poetic Portrayal of Harmony and Dissonance” was born. The book is about being aware of our own emotions in all aspects of our lives and learning how to find and explore our coping mechanisms. Through poetry I have been able to explore human resilience and strength in the face of trauma while processing my own experiences and fears. If my book can resonate with just one person then I will be delighted to have achieved my goal.
Looking to the future, I want to be involved in improving the awareness of the particular tumour, so that others do not have to wait as long as I did for a diagnosis and so the pain they feel is not dismissed or overlooked. I also want to enlighten people about the mental and emotional toll that chronic pain and physical illness can have on people and their ability to fight back. Because, as the old adage goes, knowledge is power and I fixed my broken self to encourage and educate others.
Pauline now runs our peer support group, Neuro Writing. She says:
Suffering for many years, I believe as a survivor of a malignant spinal tumour, our voices were not made to be stifled and quietened down, they were made to be heard. Therefore, let us not to be afraid of the dark, come into the light, let our dreams become reality, break our shackles and let us all rise like the phoenix from the ashes. Participants are not expected to write full stories or poems but even a short expression or verse is more than enough, We will share with each other and discuss as a group.I want participants to feel uplifted when they leave the session knowing that they have had their inner beings filled with positivity to go out there and fight another day. To deal with situations with a calm exterior and the knowledge that support is there to fall back upon.
Sharing your story helps drive positive change for people affected by neurological conditions. We like to share the experiences of real people who are using, fundraising or volunteering for our services to help raise awareness of neurological conditions.
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