It’s not enough to just treat someone. You need to ensure her well-being too.
The Star Online | Original Link
by Ida Nerina
@idanerina on Twitter
Malaysia —WHEN we staged What’ll Break You/Apocalips last November, Sue and I wanted to give some to the community, specifically ones that concern spinal cord injury sufferers, for obvious reasons. It was quite a palaver to find one that I felt a connection to.
Yes, there are a few NGO-type centres that do well and a lot for the community, but I was looking for something that truly moved me. And to be honest, one that was in an almost (for want of a better word) pathetic situation.
I made so many phone calls in the space of almost nine months and finally via my own doctor I was put in touch with the Spina Bifida Association Malaysia (SIBIAM). It’s run by a group of volunteers; remarkable parents who have full days juggling jobs and an extraordinary child. All of them working towards doing something good for our children.
And in my first phone call to Dr Amara Naicker I got terribly excited at her idea of starting an “equipment lending library”. Of course, right? I mean, spina bifida is from birth – you would need wheels, or walking aids, from the word Go! And we all know how quickly kids outgrow their clothes and shoes. It didn’t even occur to me that this would apply to their mobility tools. (Major bimbo moment yes, I know.) I was sold!
Fortunately for Sue and I, Yayasan Sime Darby very kindly came to our aid, which was such a big blessing for our small production. This enabled us to give a small sum to SIBIAM even though we did not break even. The reason I mention this is not to win brownie points from anyone but to share with you what I learnt in my search to find the right hand to give to.
Like I’ve said before, I realise there are SO many communities that need our attention and helping hand, and I would do what I can for any one of them. But for now, I feel a need to speak up a little bit more for issues concerning our central nervous system.
There’s so much more to it than we realise. Things we take for granted, like getting up from your sofa to reach for that remote control. Or walking down one measly flight of stairs. If you are fully abled and have no ailing complaints, are you guilty of taking the lift to go one floor up? Do yourself a favour, take the stairs. There’ll be time enough for taking the lift when you are older or, God forbid, have to rely on wheels.
Having said that, when I was researching for a “needy” group, my heart broke when I came to know of two young children in Kelantan and Terengganu, a boy aged six and a girl, seven, who suffered SCI (spinal cord injury) in car accidents. Yes. SO young, right?
I was also informed that they were “probably” carried around, or maybe used a wheelchair. An adult sized wheelchair. I was also told that they were using adult sized diapers instead of being taught “proper toileting” seeing as those available here are apparently for babies and toddlers or adult incontinence.
My imagination ran wild with visions of the poor kids not understanding what on earth was wrong with them, not taught about bodily functions and the importance of hygiene and physiotherapy. Not understanding why they couldn’t climb trees or play hopscotch. Trust me, I know what post-surgery rehabilitation is like in most hospitals. But that’s a different issue. I’m hoping my mind was just working overtime and that they are actually well-educated about it all and are truly taking things in their stride. I think they ARE well cared for, as in loved, but I fear the worst when I think of their daily living conditions. I wonder about their general well-being and sense of self. It’s hard enough dealing with oneself in the city, I cannot imagine what it must be like in the rural areas.
What must it be like to have to lie in bed waiting, wondering what your family is up to in the next room that’s filled with laughter; waiting for someone to bring you food or to wash you, not because you cannot walk, but because you don’t have your own set of wheels and that little sense of independence.
I wanted to rush over, reach out to them and hug them ... but truth be known I’m almost too afraid to go out to our rural areas because I realise it’s not any better than the city – where a lot of us have enough trouble manoeuvring around. How selfish of me. But how terrible that these simple, obvious needs and wants (to travel in my own country) I have cannot be spontaneous because of something that’s not within my control. And what a crime it is that we have situations like those these kids face in our country.
Thanks to a dear friend, I came to learn of our Health Minister answering questions on twitter via @staripad. So I asked about these concerns that so many spinal cord injury sufferers have. I asked these questions on behalf of those who seem to not have a voice or are not being heard. Hopefully by the time you read this, he would have answered me. And something positive is being done about it.
Because, let’s face it, you can’t just look at treatment and think it stops there. You really need to take a holistic approach and look out for their well-being also. So many I have spoken to seem to feel “what’s the point of ‘being around’ if you are made to feel you are a burden?” That’s heart-breaking, right?
I can only hope that proper care is given to everyone in need of it in my country. We are not a poor country, no one should be in a position to need for anything. How can a child learn to fish when the rod given him is five times his height?
When faced with extreme situations, we often face extreme statements like, “Tu lah, it’s punishment from Him!” Or even those as ignorant as, “What’s wrong with him?” But seeing as 90% of the world population are taking strides in their ordinary lives I guess being among the 10% for now makes me somewhat extraordinary, don’t you think?
And today, as with most Sundays, I hope to spend some time with an extremely remarkable woman, my mum. So, from the bottom of my heart and soul, thank You for enabling me to roll over to do that.