Living with ankylosing spondylitis, Kok Wee | In The Spotlight
“As someone with a disability, I choose to embrace it bravely, and not view myself solely as a disabled person.” 54-year-old Kok Wee, a traditional Chinese wind instrument player suffers from ankylosing spondylitis, an incurable disease. He shares about how a counsellor changed his life, finding purpose through music, and how he now gives back by helping those less fortunate.
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Watch more: https://www.asiaone.com/video
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LifestyleTranscript
00:00i have to take medication for a long term it affect my taste buds and i couldn't feel that
00:06the taste like laksa or mille-feuille that i used to eat
00:10last time and now the taste is totally different
00:13hi everyone i'm Ngoc Wee i'm age 54 this year i'm from the purple symphony
00:27and i play di zi, ba wu, xiao and wu lu si these are all the traditional chinese wind
00:35instrument that i play and perform currently i'm from the yuhua cc chinese orchestra and
00:41ximei cc chinese orchestra we participate in quite a number of events recently i'm also a
00:50di zi instructor at half-life school teaching traditional di zi to the autism kids i'm also
00:57teaching international students from eastern music school through zoom, scap and google meet
01:07i suffer from ankylosing spondylitis these are sickness will causing all the joint to fuse up
01:15like a bamboo then my joint also bend cannot straighten when i heard from my doctor said
01:21this is not it's incurable i have to take medication for a long term it affect my taste
01:27buds and i couldn't feel that the taste like laksa or mille-feuille that i used to eat
01:34last time and now the taste is totally different before nx time i was a normal
01:41normal person walking normally i can jump can run and after that this sudden happened that
01:49my heel getting pain i couldn't step on i have to tiptoe walk with my left leg
01:58it's more very stressful and my leg also sore so easily i still go for job
02:06working about 10 or 10 to 15 years as a machinist as the year go by my condition getting bad i
02:13couldn't stand and the pain is getting unbearable so i have to quit the job and go for medical
02:21treatments feel like not not so good and bad also i feel bad there's a medication costing
02:30all a lot of damage on my body so i even have my operation at 2.05 you know intestine bleeding
02:40internal bleeding i have to lie on the bed for 20 over days and my leg lack of exercise
02:48and become weakened then on my knee getting worse i couldn't walk so i have to use scratchers
02:55or wheelchair you have to train on the upper arms to get stronger to support my knee instead of
03:03training my knee because my knee when you are doing too much exercise it wear off fast
03:09then getting worse since the doctor said my age still not not recommend for the operation yet
03:16so i have to deal with it i have to take care i have to train harder on my arm to get it stronger
03:23i can support my body when i go everywhere now i feel very sad that
03:29my condition have to trouble my parents it's like i'm the one i have to help my parents
03:38and still they help me as i feel so stressful also so i think of a way to
03:46lesser use lesser help from my parents i modified lanyard on my bed and the
03:54window grill to pull myself out from bed and this one can solve the problem from
04:02asking my parents to help me and i can still sit out on the bed without help only my own
04:09using my own will and strength to pull up when the knee fills up i cannot wear socks
04:16even trousers and shirt i can but only the socks cannot so i have a diy a hook to
04:23assist me to wear the socks easier i have been playing on teachers in secondary school
04:30until you know on and off and only
04:38rest for one year due to my condition and from that time we go for medical checkup as usual
04:47and come back that time with uh it's so coincident that we met a counsellor then
04:54the counsellor asked approached us to do i do we need some help do we need help from them
05:04from there we share contact and book an appointment for her to come to the house
05:10she chatted with me for a while and she asked me do you want to stay at home or want to step out
05:21of the house to go everywhere to do everything anything that you you can there was a split
05:28second i said i want to step out of the house i want to go back to the orchestra and practice
05:34to play my music after the session with the counsellor which totally changed my life a lot
05:40and gave it gave me a lot of opportunity to join the purpose symphony to perform
05:49and also teaching so i practice my deeds at home to stable my skill and then it's happened that
05:59i saw the newspaper that uh teacup alaya ensemble is recruiting member who know how
06:06to play teacher who are interested in pizza i'm enjoying them to perform for their first launch
06:13of sample the senior there also asked me to take for this greeting and nafa just took the exam
06:22and get my grade 8 certificate and from there my orchestra conductor introduced me to eastern
06:31music school this is how i i start from there teaching and after that in the take-up lab
06:37concert the first concert i met my mentor mr tan chai tung who bring me to the
06:46half-life school to teach also our music ensemble it's the autism skit playing pizza
06:55so i just take this opportunity to give it a try to join the purpose symphony until now
07:02some of my purpose symphony friends also they are visual impaired yeah they also get inspired by
07:11me since my condition is very rare also but very rare to see people with my condition can
07:18pursue music to play music well the main thing is don't give up you have to try first step is
07:26the tougher you have to step up when you step up everything is very smooth last year we have
07:33been invited to perform at the estana for the national day reception the second one was being
07:39invited by your royal family to perform at the opera house and the third one is the
07:46extraordinary star being invited by my friend to perform with benjamin king currently i am
07:52busy preparing for this purpose symphony at 10 years anniversary concert on july 13 and 14.
07:59we have a rehearsal on every saturday morning time at jerome scc i'm really happy looking
08:07forward for this event i hope to put up a good show to our audience if you have any health
08:13condition just go for everything that you want you know you want to do just go for it because
08:20if you think that you are unable to do it you will meet a lot of obstacle if you think you are able
08:26to do everything will get smooth the obstacle will get uh slasher and lesser
08:37you don't have to face it bravely don't treat yourself as a
08:40defective person so that you can live a happier and happier life and be more realistic