I became paralysed eight years ago. I had a pre-existing condition that (I was unaware of) called a Cavernoma. The cavernoma bled after I was involved in a car accident.  It impacted every aspect of my life, but I have learned a new normal and live a very fulfilling life.

I have been an Independent Living Advisor for four and a half years and I really enjoy the job as I love helping people.  I wasn’t in a Spinal Injury Centre myself, so I struggled to find out information that could help me.  Knowing that the help and advice that I have provided can change someone’s life and outlook is incredibly rewarding.

Lockdown has been spent at home with my family.  The only real challenge that I faced was getting delivery slots for my shopping, however my local shops were very good and delivered my essentials and my neighbours also helped with shopping and were amazing throughout.  Home schooling the children was interesting too!  My family and I spent time playing in the garden, table tennis, basketball and darts. We played board games, cooked, had a VE party in the garden. We used FaceTime to keep in regular contact with our family and friends. We enjoyed our hour’s exercise each day and thought we would use the time to do the Aspire Coast to Coast challenge to help raise money for Aspire. It was also a good way to keep fit during lockdown and to get my children away from their devices!

I am really looking forward to this being over and getting back to normal.  A couple of weeks ago, I went to a quiet pub garden for dinner and that was lovely.  I'm looking forward to being able to plan more events but am still cautious at present.

Due to safety reasons, I’ve not been able to go into the Spinal Injury Centre and over the last few months I've really missed being able to talk to patients face to face.  I am working remotely, though, and am still able to offer vital support to patients.  I have been able to use Microsoft Teams to video call patients on the ward and I call and email ex-patients.  Plans are in place for me to be able to meet patients in the garden at the hospital soon which will be great.

We have all had to adapt the way we work and one of things I did was created a helpful checklist that I email to patients after I have spoken to them. I usually follow up with an email or message highlighting key information we have spoken about.  Over the last couple of months, the things that people have most wanted to talk about is independence and coping with their new circumstances.

People haven’t had peer support during lockdown, they haven’t benefitted from meeting someone with first-hand knowledge of living with an SCI and the emotional support from someone that can relate to their injury.

Independent Living

Living with Spinal Cord Injury

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