Chasing joy everywhere, in everything

The couple had only five good years before Irawan was diagnosed with Parkinson's disease and Lee became his primary carer.

Lee Siew Bee’s zest for life is truly infectious. At 62, Lee believes in living life to the fullest. Age, she says, is no barrier to chasing her dreams.

“I don’t really have any lofty dreams or big ambitions, actually. I just love to be happy and I simply want to live my life to the fullest,” says the bubbly Lee. “I wake up and see every day as a new start, one that is full of promise and I just take each new day as it comes.

“And, if my time is up, then it’s time to go. But until then, I am going be happy and kind to those around me because, we never really know what another person is going through,” says Lee.

Lee’s words are fully loaded, informed by a life that has been not without its challenges.

Lee, who was born and bred in Kajang, Selangor, got married when she was 22.

“I was a young bride. Not a child bride, but a young bride,” she says.

She got married after a whirlwind romance that swept her off her feet.

“I was fresh out of Stamford College, working at an insurance company in the city (Kuala Lumpur). I was in personnel and so part of my job was organising events and activities for the company. At the time, we had a joint venture with a company in Indonesia and that’s how I met my husband. He’d come to KL for training and, well, ‘’he came, he saw and he conquered’,” she says, with a laugh.

Lee’s husband, Irawan Surjawidjaja, was Indonesian Chinese. The two fell in love not long after he came to Malaysia: He loved her outgoing nature and she thought he was dashing and kind.

“He came to KL around the Chinese New Year period and so there were many activities going on and I included him in them so that he wouldn’t feel lonely. He was good-looking, with a mustache and all ... I thought, ‘Wow, this guy is dashing!’. He would open doors for me, too. I thought, ‘Where can I find a Malaysian man like that?’ He too, was attracted to me and so, it happened,” she says.

After three months, Irawan returned to Indonesia. After about a year of long-distance romance, the two decided to get married.

“It was too difficult to maintain a long-distance relationship. After all, we didn’t have communication (networks) like we do now. And so he asked me to go over to Jakarta where he lived. I was young and a little unsure but I agreed to uproot myself and go there because he really was a very nice man who always supported me,” she says.

Lee and Irawan on their wedding day, after a whirlwind romance that swept her off her feet.Lee and Irawan on their wedding day, after a whirlwind romance that swept her off her feet.

Unexpected turn

Life in Jakarta was challenging, Lee admits.

“You would think things wouldn’t be so different than in Malaysia but it was. Similar, but different. Even though his family were Indonesian Chinese, they were heavily influenced by Dutch culture and ways, and I had to learn their way of life. I come from a traditional Chinese family, so it was very different. I changed a lot – from the way I ate to the way I dressed. I never used to wear dresses as I was always a tomboy, but there, I wore dresses and I couldn’t slurp my soup anymore! When I came back home for a visit, I remember my mum commenting that I’d changed so much,” she says.

Being without family or friends in a big, new city was also very difficult.

“Sometimes, I felt like I was in a cage. But, thankfully, after five years of living there, I got a job with a foreign mission. It was only supposed to be temporary but I ended up getting a permanent position,” she shares.

But adjusting to a new life in a new place wasn’t the biggest hurdle Lee had to face.

Five years into their marriage, Irawan was diagnosed with Parkinson’s disease. He was only 39 at the time and the diagnosis changed their lives forever.

“We had five good years together and then he started having tremors. In 1988, he was diagnosed with Parkinson’s. It was a genetic condition. His maternal grandfather was diagnosed with Parkinson’s when he was also 39, and both his parents and a granduncle had the disease too, although for them it came later in life.

“And so, I became his carer,” she says.

Lee had to juggle her work with caring for her spouse.

“The disease was progressive. After his diagnosis, he could still work for about two or three years. But then the tremors got worse, along with the rigidity he would experience (tremors and stiff or inflexible muscles are among the main motor symptoms of Parkinson’s that affect a patient’s movements).

“He was reliant on drugs and the neurologists experimented with different drugs on him. He’d experience ‘on-off’ syndrome due to the dopamine he was on. Sometimes, before the medicine kicked in, he would go through a bout of muscle spasms which would last for about 20 to 30 minutes.

“Once the medicines kicked in, he was normal. At first, the meds would last for about four hours at a go, and later on, they lasted only for an hour as they would cease to work and we would have to adjust his medications or try new drugs.

“The most difficult time was when he went through hallucinations and would see and imagine things that were not there. I had to calm him down and reassure him. At times, I would pray and ask God to take me or take him as I was getting burnt out. It was very, very painful for him – and it broke my heart to see him go through it every day, a few times a day,” she recalls.

There were other side effects too.

“The medicines would make him constipated and there was one time, even though I have tried all sorts of remedies to help him, he was constipated for 13 days – and I had to use my fingers, in a glove, to ease his condition. It sounds gross but as a carer, that was what I had to do and something he had to endure,” she shares.

“But then, a new day would come and God would send something encouraging along the way, so that was how I overcame the challenges,” she shares.

For 23 years, Lee cared for her spouse.

Lee has always loved to sing and was recently a finalist in Talent Quest, a talent competition for seniors organised by Amazing Seniors. - ART CHEN/The StarLee has always loved to sing and was recently a finalist in Talent Quest, a talent competition for seniors organised by Amazing Seniors. - ART CHEN/The StarMay 1998 riots

There were also other non-medical complications the couple had to navigate through.

In 1998, when the riots broke out in Jakarta, the couple made the decision to move back to KL.

(Known as the May 1998 riots, Indonesia was besieged by large-scale riots mainly in cities such as Jakarta, Medan and Surakarta. There were anti-government demonstrations, and civil unrest broke out in Indonesia, with strong anti-Chinese sentiments. The riots were triggered by corruption, economic woes, food shortages and mass unemployment and eventually led to the resignation of President Suharto.)

“It was scary and we were imprisoned in our own home for three days,” she recounts. “We had difficulty leaving, especially since my late husband held an Indonesian passport, but we managed to get him on board a flight at the very last minute, thanks to a sympathetic Captain.

“We came back to Malaysia and my dad got us an apartment which is where I have been living for the last 25 years,” she shares.

In Malaysia, Lee managed to get a job at the same foreign mission here.

“I also managed to bring a helper from Indonesia. Because I know the language and had lived there, I did all the paperwork myself which saved me a lot of money.

“It wasn’t an easy journey ... and some memories, I just keep with me. But, at no point did I think of leaving him even though some did suggest that I consider it, especially since I was only 26 when he was diagnosed. But how could I leave? I didn’t have it in me,” she shares.

Irawan passed away 12 years ago when he was 62.

“The last thing he said to me in his final hours was ‘I am sorry’. He had promised me so many things, but because of his illness, he couldn’t do many of the things we’d planned.

“I’d cry about it sometimes but that was when I learnt to take every new day as it came. I had to be tough and I cherish the good memories and keep the ugly ones aside, hidden. I know I gave it my best.”

Lee is determined to life her life to the fullest. — Photos: LEE SIEW BEELee is determined to life her life to the fullest. — Photos: LEE SIEW BEE

Life began again

“I was 50 when my husband passed. I felt free again. I guess you could say that life began again for me at 50!” says Lee.

“As a carer, I really couldn’t go anywhere. My dreams and my life were on halt although there were times when my sister, who lived in Britain, would invite me to visit when she knew I needed a break. Irawan would also tell me to go. But I couldn’t be away for long. That’s the reality of being a caregiver,” she says. “But now, it is ‘me time’.”

Lee still works in the same foreign mission and she hopes to keep on working for as long as she can.

Happiness to her is being with friends, eating good food and singing.

Lee, who was recently a finalist in the Amazing Senior’s Talent Quest (a talent competition for those over 50), loves to sing.

“I have always loved singing. In school, I would perform at Interact Club events and even took part at a Ulu Langat district singing competition where I won second place,” she gamely shares.

“Nowadays, I just mostly sing at the karaoke but I do sometimes pick up my guitar and sing at office parties or at weddings, if I am asked,” she says.

Although travel isn’t at the top of her list – “I don’t really like the idea of packing and unpacking and I am conscious about whether my snoring would disturb my travel mates” – she has been on several trips to Europe and China, among other destinations.

“I have really good friends who are ever ready to go with me wherever. My dad says that I never needed to drive because all I had to do was call my friends and they’d come and pick me up,” she says.

“I believe that as long as we are able, we should enjoy our lives.

“We are only as old as we feel and I often forget my age .... until I feel some aches and pains do in my body parts. I am actually a walking time bomb with high cholesterol, high sugar and high blood pressure ... but I still love to eat!

“My motto? Be kind, live each day to your best because you never know what is going to happen.”

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active ageing , ageing , caregiving , senior care


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