Since my injury I’ve always had a very strange set of emotions. Some parts of the injury felt real immediately after it started. Other parts have been slow to feel real at all.
Logically I know what’s happening is real. But my emotions haven’t entirely caught up yet. I am told this is fairly common with a spinal cord injury.
Here’s three of the reasons why it feels unreal and the my best attempt at a logical explanation why.
Being open about these feelings makes it easier to process them and perhaps someone with the same injury as me comes across it and finds it useful.
Feeling: I always feel like I can walk if I just really tried harder. I often stare at the corridor and try to hold myself up by sheer bloody willpower and anger.
It always fails. It doesn’t always fail instantly, I may get a few steps before I exhaust myself.
Logic: This form of denial is pretty common in a spinal cord injury. It’s part of the process of grief and it’s an intensely strong feeling.
It comes and goes. It will probably always feel this way but as my acceptance and life improves it won’t bother me as much.
Feeling: Before my injury I never thought about how to walk. I only ‘thought’ about walking if I was doing a monty python ministry of funny walks style of walk.
For that reason having to think about walking automatically feels very fake and forced.
Logic: The reason it feels like I am ‘pretending’ to walk a certain way is because I am relearning to walk. My brain doesn’t know how to walk on the legs I have. I have to think about it as I am teaching my legs what to do.
I’ve done this before. When I studied tae kwon do I copied the instructor and essentially pretended to know martial arts for a few hours a week. It’s a similar process. A cycle of intention, imitation and refinement.
Feeling: It can’t be real. If I was I wouldn’t feel so happy, cheerful and optimistic. Surely if it was real I’d be more scared?
Logic: I was scared. I did sob and cry. But ultimately I am an engineer and in many ways my life was already prepared. We just modified my current support structure and away we went. I am excited for the new things like the buggy, trikes, building new types of bikes, inventing my own brace etc. These are projects which really matter to me because they are so impactful.
Cauda equina syndrome never looks the same twice. It always a bit different. Comparing myself to others to gauge ‘realness’ is a really bad idea.
One of the reasons I am progressing quickly is because I already had the support and the right lenses in place. From early on we rapidly started changing the environment to remove barriers. Hundreds of small changes later and we’re making lots of progress. This probably will plateau, but for now momentum is good.
I hope sharing these thoughts and the logical rebuttal helps. It’s been useful to write them down.
As a work around for these issues I have been trying to minimise the impact of my new impairments and trying to get to the point where I could accept them regardless of the reason.
For example, I haven’t accepted any expensive equipment from the NHS and I’ve brought it myself. I will borrow an NHS wheelchair for a while (as it needs to be custom made) but it won’t be mine and I’ll return it in the future to be reused. I’m not claiming any benefits relating to the new issues or applying for any funding. I’m also not doing any fund raising or accepting any gifts. I am trying to minimise the amount of support I need outside of my normal support system and maintain as much autonomy as possible. All of these things minimise the impact, so if this isn’t real at least it won’t impact too many people apart from me.
Life is very strange right now, but we are making it work. I don’t know if it will ever feel real. Perhaps in the long term it won’t matter much. We will just get used to it and keep on keeping on.
