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[Breathe. Live.] “There’s still so much I’m lucky for”
29 October 2014

Featuring the work of photographer Bob Lee, the four articles in Breathe. Live. showcase the strength and grace of our patients. They let us catch a glimpse of their everyday lives, and share what keeps them going.

“I’ve always loved doing business. When I was little, I sold photographs of celebrities. Now, I sell things on the internet.”

“I feel satisfied when people are happy with my products. What’s more important – that they buy things from me not to help me, but because they really like the product.”

34 year old Vivian has been bed-ridden since her twenties. She suffers from Spinal Muscular Atrophy Type 2, which has caused her muscles to deteriorate gradually over the years.

It started with her legs. Vivian used to make intricate handicrafts and thank you cards for her doctors and nurses.

It’s crept upwards ever since. Now, she isn’t able to swallow, and can only move two fingers on her left hand.

That doesn’t stop her, though.

Stacking two pillows just so on top of Vivian’s belly – “There’s a particular arrangement for this,” Vivian explains – her mother Ivy wheels over a Hello Kitty laptop, mounted on what looks like a robotic arm. She arranges first the mousepad, then the mouse, then Vivian’s hand, carefully on the stack of cushions.

Slowly, using just two fingers on her left hand, Vivian calls up a screen keyboard on her laptop and begins to type us an email, even as she checks on her online game character and logs in to Facebook, stopping briefly to show us her online retail store (https://www.flickr.com/photos/vgshoppingmall).

Through Facebook, her online game, and her business, she gets in touch with people from Taiwan and China, sometimes speaking with them on the phone. “They don’t have a clue that I’m like this,” she says.

She’s never been to school, but has taught herself through assessment books and textbooks. While her strong Mandarin obviously comes from her Mandarin-speaking family, she picked up English on her own from the television. “She even teaches me how to use the handphone and computer! I have no idea how she managed to learn it on her own,” Ivy said.

There’s a touch of poignancy to Vivian’s sense of humour that gives us a glimpse to the challenges she has to face every day. When we ask about her Barbie collection of 70 dolls, she self-deprecatingly laughs, “Actually, I have this belief that only ugly people like Barbies because of how beautiful she is!”

“I’ve been like this my whole life, so you could say that I have gotten used to it. I think it might be harder to cope with if I had grown up with a normal body,” she confides. “I’m already very lucky to have the support of my mother and family members.”

Her mother Ivy is the rock that has been by her side since birth – and it’s not been easy, to say the least. She brought up both Vivian and her brother on her own since Vivian was 3, working to support the family even while catering to Vivian’s needs.

Now, it’s not an exaggeration when we say she spends all her time by Vivian’s side, singlehandedly managing her oxygen, feeding, cleaning, and medications. She’s even picked up basic physiotherapy.

“That’s why I look so young! I don’t go outside much, so my skin doesn’t get damaged by the sun,” Ivy jokes.

“My biggest regret is not spending more time and attention on my older son. He has been so understanding, and I am glad we are still on such good terms now. I have a 5-year-old granddaughter now,” shares Ivy.

“People ask me what I’d do if I had more time. I would definitely offer support to other parents like me  – I know by experience how tough it is!”

It’s not difficult to see where Vivian gets her sunny disposition and good humour from – Ivy’s irrepressible cheeriness lights up the room, right from the moment we step through the door. We’re not the first to ask her about this.

“A lot of people ask, how come we’re so happy,” shares Ivy. “I believe that we should be positive – to be happy, is a good thing. If we live happily, good health will follow.”

Yet both Vivian and Ivy are realistic about the disease, and the way it is bound to deteriorate as the years go by. Vivian’s had to be rushed to the ICU several times, with doctors preparing Ivy for the worst. Thankfully, the natural fighter Vivian pulled through each time.

“I struggled a lot with myself when doctors told me that it wasn’t looking good. Should I ask them to give up, or continue fighting on?” Ivy shares.

Vivian added, “I’ve discussed with doctors, and have informed them not to prolong my life if I don’t show any brain activity anymore.”

“Every day, Mum makes me laugh by telling me jokes, acting in a very ‘cartoon’ way, and using silly voices to make me happy,” says Vivian. “I want to thank her for making me happy throughout my entire life. Without her by my side, my life would be completely different.”

Vivian was recently featured on Channel 8’s Tuesday Report – watch it at this webpage: http://www.toggle.sg/en/series/tuesday-report-feel-for-me-catch-up/312896. Look out for more of our patients’ stories in the upcoming issues of HCA Connect!