‘Over 2.5 million people worldwide live with paralysis caused by spinal cord injury’ according to Spinal Research.
This could be from falling down the stairs, getting injured while playing sports or indeed it may be medical (tumors, spinal bleeds etc.)
So what happens when a spinal injury occurs? Each case is very different. However, similar questions, emotions and practicalities may be apparent.
No one ever imagines that overnight they could lose control of their legs, bladder, bowels and/ or sexual function. Being diagnosed with spinal trauma can cause any or indeed all of these bodily functions to be lost.
Following the initial trauma, shock and horror of Spinal Injury there is a long way to go before the individual and family get used to the life changing event. That is where The Back Up Trust comes in. They are a spinal injuries charity who support both the individual with the injury and their family. I cannot praise the charity enough.
The Back Up Trust was set up in 1986 by Mike Nemesvary who was a James Bond stunt man. He had his injury when training for a skiing stunt.
One of Back Up Trust’s service which holds a strong place in my heart is their mentoring scheme. A couple of years after my mother was diagnosed with a spinal tumor I was ready to talk. I was assigned a mentor, who called me once a week to discus any concerns, queries and worries I had about my mum’s health. Having someone who understood what I was going through was fantastic. My mentor also had first hand experience of spinal injury.
The experience of being a mentee was so positive that I wanted to give something back. Consequently, I signed up to be a mentor. I have recently returned from an emotional, informative and enriching training weekend. Bringing back memories of how I coped or indeed didn’t. It was emotionally tough. However, necessary and a great learning curve. I now feel confident listening to others in a similar situation who may be suffering.
Sometimes you don’t have to say much or indeed anything. Just listen and validate emotions. Yes it is hard. And yes it is okay to feel that way.
Below is my diary extract (2013):
‘Mum had been badgering on at me to get counselling for a while. ‘I don’t need it – I’m fine’, I would snap back. I just wanted her off my back. Counselling had helped her get through an immeasurably hard period but it did not mean it would help me. After some time I researched the charity which had helped her so much, namely; ‘The Back Up Trust’. I reluctantly signed up for telephone counselling – what I thought to be the easy option. It would make mum happy and there was nothing to lose.
I was in the dingy computer cluster at university working diligently on my dissertation when I received the first call. Caught totally off guard I grabbed my phone and ran out into the corridor. I awkwardly answered the general pre-written questions, stating on a scale of 1 to 10 how I felt. How could I quantify my feelings into numbers when I could not even note how I felt in words? I had little hope for this so called ‘telephone mentoring scheme’ I was to be involved with. Plus it was not me that was a spinal injury sufferer, I did not deserve help, I did not need it.
A few days later my mentor, a guy whose brother had a spinal injury, called me. That first conversation was full of uncomfortable pauses, mumbled, jumbled and non-descript answers on my part and light probing on his. My guard was still well and truly up. I was going through the motions of talking but not really engaging. I got on with my week not really thinking about the phone call. Then before I knew it Thursday our designated talking day cropped up. I sat at my desk awaiting the call. I only really agreed to a second conversation because I felt obliged too. I did not want to mess the charity around. Plus this was all making mum happy. Each week I had a few tasks of writing things down.
As time went by our dialogues became more natural. I spoke about how I truly felt and for the first time I consulted in someone. My mentor was my age and actually understood what I was going through. There was no shame, nothing was abnormal or wrong. Having him at the other end of a phone meant I could pause, write notes, nervously tap my feet and it didn’t matter. I was beginning to understand that my feelings did count and ignoring them was not going to help anyone.
My mentor taught me some invaluable lessons about looking after myself. The most important thing; ‘you cannot care for someone else if you do not care for yourself’. This was so true. I looked back; times I had been useless with helping mum, were the times I was breaking down inside. To help others we must first help ourselves. During the first several weeks, I used words such as guilt, selfish and hypocritical to describe how I was acting. My mentor reassured me that he felt exactly the same way with his brother. How could he go out with his friends, have fun while his brother was bed-ridden. Amen. Someone finally echoed my thoughts and felt exactly the same. My mentor coped with doing his own thing by the stories he could tell his brother. ‘When visiting your mum, she wants to hear everything you have been up to. You will look after her better and have more quality time together if you make sure to do your own things’, he reassured me. Everything he was saying made sense. It was all clicking together. Now I knew I needed to focus on myself for some time.
Being in my third year at university, I was looking for my next step. My mentor’s advice gave me the courage to do what-ever I wanted to do. My one true desire was to travel the world. I wanted to see what else was out there.’
Two years on, I can say I am back safe and sound from a seven month world adventure. Yes – it was hard being away from mum, especially when she was remitted back into hospital but I am back now refreshed and ready to spend quality time with her.
There are always a million and one excuses why you shouldn’t do something but we make time for the things that matter to us. If you want to travel – you will travel.