One of WildKat's readers (Matt) asked her this question recently and Kimberley aka WildKat wrote this in response. You can read it all at the link, but I'd like to highlight part of her post here. Kimberley has multiple disabilities and writes about how, when she acquired her sci, she "already had the mind set of being able to do whatever I wanted to and I knew if I wanted something I would figure out a way to make it happen", which she attributes to already having a disability. (I might add that this is also true if you're Irish and persistent (although I get called stubborn by those who don't truly understand the virtue of persistence). In any event, it's a good thing, since a medical type was trying to get her into a nursing home. Kimberley was more interested in getting on with her life, but she adds this, which I'm posting in case anyone with a recent sci is reading:
Then there was all of the hidden aspects of spinal cord injury. People see the wheelchair and understand that you can’t move. They accept that you can’t feel certain parts of your body but that’s usually as far as their understanding goes. They don’t usually understand that all of your plumbing don’t work the same as it use to. Your whole life seems to now revolve around the bathroom! After a few months the indwelling catheter comes out and although you feel a new found freedom you have to learn to d intermittent catheters yourself. Otherwise your bladder will either spasm and let go of it’s contents at inappropriate times, or it will just relax and expand until there is no more room causing urine to back up into your kidneys and do damage. Then every other day there’s the dreaded bowel program . There’s also worries about developing pressure sores if you don’t shift your weight around. It can all become pretty overwhelming!
Of course because of the level of my injury I also had to worry about something called Autonomic Dysreflexia to worry about, which can cause unconsciousness, seizures, stroke or even death if not death with promptly. You are thrown into a completely different world and it’s a lot to take in. Especially while you are re-learning basic things like how to brush your teeth, how to balance, how to move from place to place etc.
Once you learn how to do things again and settle into a routine it gets easier. If you accept that this is the way your life will be then you can move on and deal with things a lot easier as they come. I guess I just went into things with the attitude that life wasn’t over. It was just going to be different and dealt with whatever was thrown at me the best way I knew how.
I hope you go on over and visit WildKat's blog - she has many great posts!
2 comments:
Hi there,
It was a doctor rather than a nurse who tried to get Kimberley declared incompetent; she's written elsewhere that the doctor was from India and so perhaps he or she was more used to having a "paternalistic" relationship with patients than some (but not all) western doctors.
However, I would imagine that Kim wasn't the sort of patient they were used to - a lot of patients might be so distressed by the thought of being in a wheelchair that it wouldn't occur to them to argue over which type of wheelchair to use, or so distressed by becoming paralysed that they lack the determination to self-advocate that Kim had, or perhaps even so desperate to get out of hospital that they just comply anyway.
Her presence of mind in that situation really amazes me. Another interesting chapter in her story is the struggle to keep her guide dog, and the fact that she's now having to train another herself, because the schools won't train someone in a manual wheelchair. Of course, plenty of C6 quads use power chairs, but expecting a T12 paraplegic in their 20s or 30s to use one is just ludicrous.
Interesting story - maybe she should write a book! Thanks Matt
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