There’s something about quadriplegia …

From country kid ...

From country kid ...

One day a stranger asked me what my disability was. I generally consider it rude for a person to ask this unless there's a valid reason (and nosiness is not one) but sometimes I get caught off guard. My 'good girl' reaction took over and I answered, 'Quadriplegia'. The stranger looked at me and said, 'No it's not'. I laughed, somewhat bemused, and said, 'Oh okay then, what is it?' He replied, 'Well you can move your arms, so it must be paraplegia'. I don't remember my reply to him but I did instantly curse Christopher Reeve.

Famous for playing Superman before his injury, post injury he was so hell-bent on being 'cured' that he inadvertently became the poster child for quadriplegia in the process. Unfortunately. I say 'unfortunately' because in the media, only two images of quadriplegia exist. The 'Christopher Reeve' model - can't move anything but their neck and have a tracheotomy, and the 'I proved the doctor's wrong!' model - the person who was allegedly told they'd never walk again and then 'miraculously' do.

There is not a third model. God (if he/she exists) does not heal people and raise them from their wheelchair.

The second model above occurs simply because of the complexity of the spinal cord. Doctors may (rarely) get the initial spinal cord injury (SCI) diagnosis wrong. Whack your spinal cord hard enough and occasionally it 'acts' and looks more damaged than it is. Yay to that person. So the doctors were wrong. Good for you.

In short, quadriplegia simply means 'four limbs affected' and paraplegia means 'two limbs affected'. That's it. The degree of injury depends on where on the vertebrae and the spinal cord the injury occurred and how badly the spinal cord was damaged. The protective vertebrae surrounding the spinal cord isn't unbreakable. If it is damaged by enough force, the shattered bones can slice up the spinal cord like Edward Scissorhands doing topiary. All those useful nerves stop working and it's bye bye foxtrot and hello wheelchair.

So, despite what's been occasionally suggested to me, the reason I can't walk is not because I'm not trying hard enough.

You can't repair a damaged spinal cord. Not with stem cells, positive thinking, hope, meditation or even the breath of a new born baby. I distinctly remember someone telling me that research was looking at a two year window of seeing 'a cure'. That was nearly thirty years ago so I'm glad I wasn't holding my breath.

In SCI lingo you can have a incomplete injury and a complete injury or both. 'Incomplete' means damage of the area of the spinal cord where the injury occurred was not complete. 'Complete' means, well, complete - below the level of injury all sensory and motor function can be considered lost. However this latter concept is simply untrue. Importantly, as individual as humans are, so are the individual differences in spinal cord injuries. Just because someone has quadriplegia at a certain level of injury, it doesn't mean someone else with the same injury has the same outcomes in terms of loss of feeling and movement.

Speaking of movement and cures, the public shouldn't get excited about robot-like machines that you see on the nightly news every so often - 'Quadriplegic man walks unaided down the aisle!' These 'inventions' are not a cure and not a realistic quality of life option. Most of all they do not remove the myriad of associated SCI problems which (can be) loss of sensation, bladder and bowel disfunction, highly sensitive skin, and pressure areas. It is merely pretending to walk for the emotional need of some injured people and others such as family and friends.

It is far better to accept your reality and have people in your life who accept you as you are.

I only know what I'm like with the disability I have. I have good use of my arms and upper body and everything else is less or more. There's no benefit for me to disclose more detailed and intimate information about my specific disability. However, if I'd had a higher level of disability I might not be nearly so chipper, outgoing and adventurous. Or I may be more so. If someone else had mine they might think their life was completely over.

What's much more important with any disability (and even without) is focussing on stretching the possibilities of what one thinks they can do with what they have. It's much easier to do this when people don't assume they know your potential and abilities better than you do.

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... to Carambar, a French treat!

 

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About Sandra E Brown

I withdrew from my Masters (Neuropsychology) to write a blog instead, and to teach English as a second language. Life is too short to be doing something you want to retire from at 65! I now live in Paris, France.
This entry was posted in Disability, France, Paris, Paris/France, Quadriplegia, Travel. Bookmark the permalink.

6 Responses to There’s something about quadriplegia …

  1. Kylie says:

    Fancy a person saying that. People are knobs thinking they know best.

  2. As someone who has struggled with brain injuries I am never taken seriously as everyone thinks of just the worse cases they have heard of. I have been laughed at or told that I can’t have a brain injury as I wasn’t put into a coma or seem so normal.

    It sucks that you get that from people. Thanks for an interesting blog post about your quadriplegia.

    • Hi Annabelle – thank you for commenting. I’m really pleased you found my post interesting. Sometimes it actually does make my life easier as my disability is visible. Something for you coincidentally – I worked in neuropsychology for 8 years as a researcher looking at long term outcomes of paediatric brain injury. Many adults had what are termed as ‘Mild’ brain injury but many reported ongoing issues such as fatigue, lack of concentration, headaches and memory loss. My friend Mel has many years experience in the field of brain injury in multiple areas and she writes a blog that you might find useful: http://www.changedlivesnewjourneys.com/ There are articles about cognitive fatigue, lack of motivation etc. I’m off to check out your blog now:)

  3. Paul Rob says:

    Hi Sandra

    As ever, an insightful read. Thank you for writing about this experience you had and I especially like the point about ‘people thinking they know your abilities better than you do yourself’.

    And I also appreciate reading the comments from your readers too.

    Hope you’re having a Carambar of a week.

    Best wishes
    Paul

    • Thanks for your comments Paul! I too like reading comments from readers – it helps me with my editing eg knowing that I didn’t ‘dumb down’ the topic nor bore anyone with jargon. I’m glad you liked the end paragraph – it is true for anyone that we know our abilities best despite what others think (even if they’re well-meaning). BTW Those Carambars stick your teeth together with toffee deliciousness. Good way to remove a filling;)

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