Elaine’s story: How a mentor transformed her life

1 July 2020

Two years after a misdiagnosis, Elaine found that her life had been changed forever. What her doctor thought was a frozen shoulder turned out to be compression on her spinal cord. Elaine, 64, had a bleed on her spinal cord resulting in permanent, incomplete damage at the C5/C6 level.

Elaine, a self-described “daredevil granny”, found her injury devastating. Her active lifestyle was interrupted by nerve pain, bladder and bowel control issues, and reduced mobility.

“I travelled quite a lot and played golf two or three times a week. Now I can barely walk, I’m on a restricted driving license, and I’ve had to remodel my house to make it accessible.”

Because of the gradual onset of her injury, Elaine did not have the benefit of going through rehabilitation at a spinal centre. Not only did she miss out on physiotherapy, but she also didn’t have the chance to learn tips for living this new chapter of her life.

“After my injury, I found myself asking questions like ‘is this normal?’. I had no-one to talk to as a point of reference. My GP admitted I was the only person at the practice with a spinal cord injury.”

Elaine ended up looking around on the internet for advice on living life to the full with a spinal cord injury. After speaking to our friends at SIA, Elaine was referred to our mentoring team. After chatting to her and finding out what she wanted to get from mentoring, we soon partnered her up with a mentor.

“I got along with my mentor like a house on fire! My mentor understood what I was going through, his experiences matched mine.

“I honestly don’t know what I would have done without him.”

Elaine’s mentor taught her essential, practical tips for living well with a spinal cord injury. He showed her how to manage the pain in her hands using compression gloves, and he taught her the importance of keeping hydrated to avoid UTIs. Most importantly, Elaine’s mentor gave her the confidence to make her voice heard and ask for a spinal centre referral.

“I thought I was at a dead end with my spinal cord injury. There are dark days where you can wonder ‘what’s the point?’. I thought being in my 60s and having a spinal cord injury meant I was on the scrap heap. I didn’t think anyone would help me.

“My mentor told me to talk to my doctor and get referred to a spinal centre and I haven’t looked back since.”

Elaine is currently waiting to go through rehab at a spinal unit as soon as the ongoing coronavirus pandemic eases. She is looking forward to learning more about how she can live life to the full after spinal cord injury.

“I would recommend mentoring to anyone in my situation. It feels like my world has opened up again now I’m on the road to rehab.

“It was lonely having a spinal cord injury and not understanding what I was going through. I now know there are thousands like me, so I don’t feel so down any more.”

Do you think you would be interested in speaking to a Back Up mentor? Don’t hesitate to get in touch.