Spinal cord injury does not just happen to the individual. There is a very wide ripple effect after this kind of injury, affecting the whole family, friends and support network.
I have now been spinal cord injured and lived with the effects of my paralysis for over 32 years. Life becomes more challenging as we age and having a spinal cord injury is no different. Just when I think I understand the effects of my paralysis, something happens which shows me that the body still has a very strange way of surprising us all.
Having a spinal cord injury is not something that I planned for. Spinal cord injury happens in the simplest of circumstances and when you least expect it.
And it’s not a life that I would have chosen but having said that, I’m grateful for the opportunities I have had and I’m proud of what I have achieved since my injury.
If you had told me two minutes before I dived into that swimming pool what was going to happen, I would have told you that I would never have coped. But I have coped, I have lived a life worth living, I work, I enjoy social activities, friends and family and I contribute to my local community.
When I look back and reflect on my experience in Southport, it was an immensely lonely time for me. I was only 14 years old and spending such a long period of time away from my family on a hospital rehabilitation ward was very difficult.
Did I enjoy my rehabilitation time in Southport?
Enjoy is perhaps the wrong word. It was a positive experience after the negativity of my injury and onset of paralysis. I will always be grateful for the period of rehabilitation I received, I met some incredible people (many worse off than me) I shared experiences, I grew up quickly and I made lifelong friends whilst a patient there.
And so, that brings me to the future. The media often feature individuals who have walked out of spinal cord injury rehabilitation wards claiming that so much progress has been made in spinal cord research that regeneration of even long term chronic spinal cord injury, is now a real possibility.
But this can be dangerous. I have encountered people who are investing themselves in a cure, who feel that if they do not hate their disability they are somehow giving up, and have pinned all of their hopes of meaning and happiness in their lives, on a cure.
From my perspective, we are still a long, long way off the day when we can tell a newly spinal cord injured person that they will get better and walk out of hospital. It will happen and the cure will come – in the same way the cure will come for those living with Cancer, Dementia, Parkinsons and other neurological conditions – but it is not going to happen in my lifetime or help me.
I am also all too aware that those working on the cure for spinal cord injury are too focused on getting me to walk again. Ask anyone affected by spinal cord injury what they miss the most, and the answer I can assure you will rarely be “the physical act of walking” or “standing on my own two feet”.
Don’t get me wrong, I as much as the tetraplegic next to me, long for the day when I can walk on the beach and feel the sand between my toes but the other problems - apart from not being able to walk - associated with spinal cord injury paralysis are far more devastating and difficult to come to terms with.
Take if you will coping with double incontinence and take the constant threat of pressure sores - that could result in months of bed rest - and you see that the inability to actually walk is actually pretty insignificant. The world is now a much more accessible place for wheelchair users, we can function pretty well on four wheels – with the right support and equipment, just as well as on two legs – but what most people want after spinal cord injury is to have their bladder, bowel and sexual function restored.
I have often been asked what advice I would give to somebody who has just sustained spinal cord injury and who is starting out on the long journey of rehabilitation.
My advice is always the same; take it easy in the early stages and take things day by day.
Everybody’s journey after a spinal cord injury is different. We all have different challenges in life, we have different support networks and we have different goals. But there is no rush; there are no high expectations.
Think carefully about what you want to achieve in life and there are always early challenges to overcome: where are you going to live, how are you best able to support your family and how are they best able to support you and are you going to be able to go back to work?
Don’t set your goals too high; simply completing you rehabilitation and being discharged home from a spinal injury centre is an achievement in itself.
Having said that make sure you have something to fill your day and you have something to aim towards and accept the offers of help and support that will come your way from family and friends and from your wider support network.
If the experience of spinal cord injury has taught me anything over the years, it is how precious life is and how generous people can be.
Jonathan Fogerty
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