Monday, August 20, 2007

The Stare

I was inspired by Daphne Ling’s The Story of Little Hisham and his Red Balloon here that immediately after I left the house of one young guy with a spinal cord injury, I felt I should write it down and say something about him.

*Roma Irama, a 20 year-old dude involved in a terrible accident two years ago and suffered exactly the same injury as mine, where our cervical cord numbers 6 and 7 were badly damaged. But the weird thing about spinal cord injury is, we may share a common injury technically but our condition varies. The thing is, I am far worse than him physically as he is capable of doing more things independently.. That’s what I told him just to give him the slight edge for that moral-boost. The numbness on his hands are there but his fingers are functioning quite well. He can even move his right toes. In a way, I was telling him the truth.

I got to know him by chance. He’s my girlfriend’s sister’s colleague or something like that. Eh, hold on. He is…my girl’s…colleague’s brother. Yea, that.

And so we went to his place situated somewhere near the graveyards in SS1 PJ. Roma Irama’s sister wanted me to come over so much as according to her, her brother has never been going out since the accident two years ago. So it would do him good if there’s someone like me to give him the ‘talk’. He was too reserved that it got her so worried.

Well, I tried my best. Immediately I learned he’s got almost all the ingredients needed to get back on track, rejoining the society. His physical strength can put most of us old quads and paras to shame. His family has been there cheering on since day one. And he doesn’t have a girlfriend to distract him.

But he lacks the self-confidence.

Naturally being an introvert, Roma Irama is definitely lacking the mental strength. It was written all over his face. His body language was there to let the whole world see how shy he was. My girl had to leave us two alone and that too I find it a little difficult to get him open his mouth. Only after awhile I knew he was listening all the time because some of my stupid jokes got him in stitches but still can’t really get him to spill out what he had in mind.

A few puffs (yes, he smokes too) actually did the trick and he was willing to open up bit by bit after that. As I predicted, the feeling of being physically different from the others was the main reason holding him back. The kind of stare you get when your fly is unzipped. Or the kind of head-turn a busty lady usually get when walking past us, men.

Yes, the feeling of discomfort. Things like, ‘oh no, he’s looking at me because I’m crippled’ or ‘Is he looking at me or my urinal bag’. That kinda stuff will always bug every person on wheelchair to bits during his earlier years being crippled. So no way I can blame him. It took me and some wheeler friends more than three years to bounce back, and this poor chap has only been in wheelchair for two. But he is lucky to have met someone in the same boat to nudge his crooked spine off and get things moving at this very early stage.

Come to think of it, its not really in what shape you are or how different one can be. It’s not really much about the lack of confidence nor mental strength from a person who had a brush with death and survived to endure more shits in this world. I think what is lacking more than all the above is, public awareness. As a result, we get the ‘unwanted stare’. Its not wrong to stare as human being are curious lot. Fine there. But must one stop just for the sake of staring for one full minute? I mean, hey, hello…you’re drooling there…60 seconds of your freakin’ life is on hold just to look at a guy on wheelchair? Whats the deal there, man? Come oonnn, your wife needs you more there. Mind your own business, a**hole.

Sorry got carried away there.

Now where was I again? Ah yes, that. A**hole!

Back to Roma Irama. We spoke for about two hours and I remember telling him its not weird to have such negative perspective towards the public and vise versa. What he needs right now is to break the duck And the best way is to get some wheelchair buddies to go along so that when the ‘stare’ starts rolling in, it could well meant for anyone of them, and not just him. That very first outing will serve as a tool to get him ‘warmed up’ at the same time. Just to get the ‘feel’ of the new atmosphere. And I promised him, once the duck’s ‘smashed’, he will be nagging his carer to take him out more often.

Before we split, I provided some infos on all the benefits he gets to enjoy from Jabatan Kebajikan Masyarakat. Actually more than one can imagine. Its not bad though, minus the red tape and shit.

You know what, I am in no position to tell anyone to ‘get a life’ but if only they knew my point, my intention, the message i'm trying to get it across, they’d wish they’ve had met me much earlier. But if only they knew…

*Obviously Roma Irama is not his real name. It's Amar. I just felt like dangdut-ised this entry.

24 comments:

tokasid said...

Salam kerp:

Bro, I think you did good with Amar Rhoma Irama. The fact he is now talking to you, an outsider is something positive. He'll need all the encouragement from you and other brothers on wheelchairs.

I now why Amar felt like a 'weirdo' to go out. Its that our public had compartmentalised OKUs, Special children, single mothers, HIV-infected ppl. drug addicts etc.

before going to med school I too looked at ppl on wheelchairs differently. I don't stare at them but I pity them. Because they can't walk. Becoz some can't take care of themselves.

While in med school things changed. We understood them more. They do not want PITY. They want SUPPORT. They want ppl to understand them that they can be independent despite their disabilities. They want RESPECT.

They are not weirdos. They are as human as anyone. Its just something unfortunate happened to them. They didn't asked for that but they accepted it. And they want to accept it well.

Kerp, sometimes it came across my mind, if something bad like that happen to me..I don't think I can cope well.

So kudos my bro. And thank you for helping Amar out of the closet.
Bravo.

Anonymous said...

I fully agree with tokasid, syabas kerp! But, I doubt you would be able to assist this guy here, go: http://mindacergas.wordpress.com/2007/08/19/is-bush-an-idiot-watch-this/#comment-1128

- Amir

Anonymous said...

oops! The link did not come out right earlier. Try this:

http://mindacergas.wordpress.com/2007/08/19/
is-bush-an-idiot-watch-this/#comment-1128

Make sure you join the 2 lines - Amir

zorro said...

There you go Danny. Amar needs your mental strength and fortitude to help him clear the hurdle. You got a mission Danny, and it is no mean feat. I do not doubt that you can hold his hands and walk with him. Your visit and your positive disposition will help him trememdously. Keep reinforcing him the way only YOU can. Looks like God has sent you to Amar. Tell Amar we are all thinking of him and wish him all good things. Cheers neighbor. Last night watching EPL on "big screen" was quite an experience huh....all three races watching as Bangsa Malaysia.

Nak Tak Nak said...

Dreat job there Kerpie. Next you'll convert him into a Gunner.

Anonymous said...

ahaa...finally i found you...

Kerp (Ph.D) said...

Doc,

I am even more impressed by your take on this one. Well said.

I went through exactly where amar is now emotionally. It was her sister’s initiative that got us moved and we went without giving 2nd thought and I’m glad we did.

But sadly it has become part of us to be stared at in public places for being ‘different’. As I said, we cant blame them but it wld do the newly- crippled good if only we’ve reached the respected level of awareness amongst the society. Still a long way to go and until that ever happens, we’re still weirdos, or freaks.

I’m so glad to have decided to blog and get to know there are good samaritans like u. and being a doctor, that made it even better. Thank you so much, doc.

Kerp (Ph.D) said...

Amir bro,

Even u agreed with doc tokasid’s view. He summed it up perfectly well.

Oh, and thanks for the link. I can swear by now this bush fella is just a plain moron. But then again kan amir, what do u expect from a redneck whos dad the original hillbilly?

Uncle B,

I did my best and the rest is up to him but I know he’ll get out of his comfort zone eventually. And amar is not the only case as there a number of others facing the same predicament. Depression sucks. And it didn’t help either to stay in a room without a window. I will get back to him in a coiple of months time and even a slight improvement wld meant a job well done.

Not just the usual 3 races lar unc B. uncle jerry was there. and so was dr. harinder. The original muhibah. The disappointment of the 3 matches only sunk in this morning. Hahaha..

Cikgu,

Euro football makes good conversation. No better ways to break the ice than talking football. Its one thing amar enjoys which is good now the season is already underway.

And no, too late to talk him into being a gooner. He’s very much a red devil since forever. Lets hope ManU’s current run doesn’t add more to his gloomy days. Haha…

anon 6.52pm,

glad u've found me. howsit goin on that end? is everything alright? sure hope so. feed me some news will ya?

sooo...whats your name btw?

Uncle Ma'il said...

Hi Danny, greetings from Perth!

Glad to see you are well and keeping active socially. And great job you did with Roma Irama - nice name too, romantic - isn't that the name of an Indonesian singer or something?

Btw have you heard of Ron McCallum? May be you can tell Roma about Ron. He is a Professor of Law
and the dean of the faculty of law at Sydney University. Nothing special about that kan? But what is special is that he is blind.

Ron, now 58, was blinded soon after his premature birth by an overdose of oxygen in the humidicrib.

The realisation that he was cut off from the written word inspired in him a great passion to read. He is the first totally blind person to hold a full professorship at any university in Australia or New Zealand. And of course he is eternally grateful to Louis Braille for having invented a system of reading for blind people.

Uncle can tell you more about Ron, but the moral of the story is: don't shortchange yourself, whatever your handicap is. Give yourself the best chance at achieving your utmost and at living life to the fullest. It's quite amazing what you can achieve if you have the will.

With kind regards, and salam to your papa and mama. Take care...

Kerp (Ph.D) said...

Uncle Ma’il,

So nice to hear from u again, all the way from down under.

Amar is one of many cases I’ve attended to and whats amazing about home-visit is I get to learn more in return. And naturally will give what I’ve learned from the previous home-visit to the next and will pick something new from there.

Thanks for the very useful piece of information. Prof McCallum is one success story that ought to be a benchmark for others to try and emulate. Not just for the visual-impaired and the physically-disabled but everyone.

It takes time normally for one to get on his two feet again and I know he will eventually, but only God knows when. Our job is to give that little nudge so he’d come to his senses and start somewhere sooner.

Thanks for dropping by uncle. Oh, and my deepest condolence on the passing on of your beloved brother.

Irwan, Nadia and little Irfan came over a fortnight ago and I was glad to hv finally met Irfan Adam.

Mior Azhar said...

Kerp
the stare, ye? Even fat people like me also suffered the same fate.
Berat mata memandang berat lagi bahu yang memikul.


ooh gunners rupanya.... sorry mate

Kerp (Ph.D) said...

bg mior,

it cld well be that ur the mark addy of malaysia that u get all the unnecessary stares.

give urself some credits la bg mior. the bigger u r, the more ur missus will give her love to. hahha..

thanks, bro!

*nasi lemak still on ke?

susan loone said...

hi kerp. thanks for dropping by my blog and your kind words. never underestimate yourself. your stories are so inspiring :-)

Kerp (Ph.D) said...

wow, susan loone was here. i've overused this word but since she's here with the kind words and support, i'm gonna say it again, having u here is an HONOUR, susan. thanks for crossing over!

botak said...

Kerp,

You just told me to "get a life", and I want to thank you for that.

You not only did good with Amar but you also just rejuvenated a 48 year 'old' man, with diabetes, angioplasty twice and a brown-out professional life.

And I love you for that!

Kerp (Ph.D) said...

now that your age is revealed, it would be rude of me to simply address you as botak.

bro botak sounds cool tho.

well,ok honestly, for what u've gone through, dont u think u deserve to lead a good life, sir?

most of us broke our spine when we were barely 18, so imagine how shitty it feels to be confined on wheelchair when ur peers are out there enjoying the new found freedom, out dating hot chics or just plain galavanting.

so i'm making full-use of where i am now, as i never know if i will be admitted via ER for some complications and stuff. to me, freedom is precious. but then again, dont we all?

thank you.

Raden Galoh said...

Bro...Been reading yours but never leave a comment. You are an inspiration at least a helping hand to Amar. I'm touched that you managed to make him talk to an outsider...that shows he wants to have friends and connection with other people.

I learn alot about dealing with life from you too. Thank you for sharing.

Take care.

Kerp (Ph.D) said...

Akak RG,

Thank you so much for dropping by. Again, I’m honoured. Just like you, I have been reading OBB too, without leaving any comments.

Amar is a good kid and smart too. when he speaks, he speaks with substance. But whats harder abt the conversation was to get it rollin’. To get it flowing. and I felt awkward myself occasionally when the room went eerily silent with chirping crickets as the soundtrack in the background

I will cross over to OBB in a bit. The last time I’m there was before you went for your Umrah. I’m just glad to hear from you.

Thank you.

waterlily said...

Salam Kerp,
Agreed what Doc TA said. Tak kenal maka tak cinta. Yes,of course we don't want pity.All we need are more SUPPORT. We want REESPECT. Saya sungguh musykil kenapa media arus perdana jarang interview OKU yang berjaya @ ada ruang tertentu untuk memperkatakan ttg individu OKU yang independent. Yang banyak cuma cerita ttg kebaikan yang politican buat untuk kami. Dasar itu & ini yang kononnya membela nasib OKU tapi....

Daphne Ling said...

Hey Danny,
Thank you for the mention; I am indeed honoured =)
As for Amar, you did good. There's nothing like hearing it from a person who has gone through the same thing.
I personally never use the line 'I know how you feel', unless I myself have really been there...It is something I learned from the hospital...
People know when you're trying to be 'nice' and when you really mean it...
There's alot of difference between 'I know how you feel' and 'I feel for you'...
You can emphatise, but you cannot ever really know...
So it's great when you're there to cheer Amar on, because you, unlike other well-meaning friends and families of his, really know what it's like.
A big 'Kudos!' to you bro!

Kerp (Ph.D) said...

Pn waterlily,

Yes, Tokasid had the finest point of view on this. It kinda saved my time really..hihi..

Sebenarnya dah banyak kali function yg saya attend diketengahkan dlm arus perdana. TAPI, tak sampai berapa saat pon sbb kalau kita perasan, VIP yg officiate majlis tersebut lbh bnyk disiarkan. Why? It has to be about politics first, And only towards the end of the report, media cetak dan tempatan akan sentuh sikit ttg majlis tersebut seperti ‘beliau ditemui selepas menghadiri majlis mesra bersama anak2 yatim piatu and blablabla’. I mean, whats up with that?

Thanks for dropping by anyway. Lovely to hv u here.

Daphne,

Credits should really go to u, sis.

Right after I got into the car, my main concern was if the meeting left any impact from amar’s point of view. It kinda bugged me all the way home. Sure I’ve done my part but would really mean a lot if it has lifted him a little bit.

U know, daph, even if I used that ‘I know how u feel’ phrase, I don’t think I really do. Different patients different cases. We may hv gone through similar shits but our backgrounds differs. I’d rather use the term ‘there are many cases worse than yours’. It’s a fact. I’m always trying to be realistic in my approach. So you got it nailed on the spot. One can empathise but one can never really know.

Perhaps if I hv another home-visit, I’ll seek some advice from u and tokasid, just to learn some of that extra words of comfort.

Thank you.

Pi Bani said...

Kerp,
One of my fellow volunteers in my NGO is a physically disabled person - always either on his OKU motorbike or needing his crutches to walk. But he had been like that since he was young (practically spent his school days at the hospital bed - even took his exams in hospital) and so by now he's used to all the stares. But because he made himself busy in all sorts of charitable activities and volunteer works, instead of getting all the stares, now he gets people saying hello to him wherever he goes.

I'm sure slowly you'll be able to encourage Amar to get out and meet people... and errrr... who knows... to start blogging as well... ;)

Anonymous said...

Dear Kerp,

You certainly did good job with that Rhoma.

I had an accident once and my C5 and C6 were dislocated.I was in the hospital for 1 1/2 months, not able to move at all as they put 1 litre of air/tebuk your tepi head so that your C5 and C6 will be back to its postion. Thank God,it work!

Kerp,
Have faith in God,tak akan diduga you jika you tak mampu diuji.I do not know how you feel, but being a Muslim, I selalu rasa apa yang I dapat ada hikmahnya/blessing.

Just to let you know - I am also a cancer patient, I got it few years back.

Be with that Amar,he needs you.

Kerp (Ph.D) said...

Kak Pi,

Your colleague is one case of the finest example. His mental strength out did his physical ability as proven where he is now. We cant stop the stare but we have the power to ignore such unnecessary perception from strangers who are irrelevant to your life.

I can only hope amar will be able to start somewhere very soon. Even on a lemur-pace, I’ll take it. orang jawa kata ‘alon-alon’.

Thank you.

Anon 9.09am

I appreciate you dropping in.

Yes, I have been tested and by no means its going to be last frm God. We all should put it in mind that everything happens for a reason. How true is that. I’m just thankful altho sometimes I’m back being the ol’ me, which isnt pretty. I can only ask for His forgiveness.

If u don’t mind, feel free to drop me an email. Wld love to know more about u.

Thank you.