I sustained my spinal cord injury (SCI) early in life, when a rare childhood cancer, caused a tumor to swell, applying pressure to my spinal cord, and causing irreversible damage. Although I grew up with my SCI, a lack of specialist knowledge where I was treated, led to me and my family spending a large proportion of my 24 years, not knowing where to turn for help.
No one we had contact with medically could tell us how to live with SCI, other than pointing us towards the local special needs school. Over the years it was my parents that found the money to buy me the best wheelchairs, adapting the house and fought to get me into mainstream education.
I found it frustrating that the same SCI related problems continued on into my life at university and once I began working. After again having my working day disrupted with the same old problems, I searched for information on the internet, where I was directed to the Spinal Injuries Association (SIA). I threw together an emotional email to them asking for help and within 48 hours a Peer Support Officer rang me to chat.
During that one 40 minute phone call I received more information than I’d ever had in my life. I cried with relief because I’d finally found someone who knew how challenging it could be, and had answers to problems that for years we had been told were something we just had to live with. I can’t help thinking how different the last 20 years would have been for us all if we had received this vital support from the start.