1. What were your childhood years like?
It was generally alright, but there were many activities I couldn’t take part in, like physical education lessons. My mother worried a lot when I went out on my own and I did feel a little envious of my peers who could go out freely.
I guess I got used to it after a while and learned to find joy in home-based activities. I enjoyed playing computer and board games with my siblings.
2. What does a regular day for you look like?
Ya Nee (HCA Star PALS Palliative Care Nurse) helped to arrange a candle-making gig for me, so I spend a fair bit of time melting and setting lavender-scented candles. In my free time, I usually play games on my mobile and watch YouTube videos. I think it is good to keep myself occupied.
3. What are some of the challenges you encounter?
Due to my heart condition, my heartrate might spike suddenly, up to 200 or 300 beats per minute. Each episode of tachycardia means that I will have to be hospitalised again.
My legs often develop cellulitis, which is painful and inhibits my mobility. I do feel worried and exasperated with all of these health challenges but I focus on getting better and resuming normalcy.
People often mistake me for a child due to my stature, and they hold certain preconceived notions – some think I won’t be able to achieve something even before I try.
4. What are some of your dreams and aspirations for the future?
I don’t really have any dreams and hopes for the future – what I want is not within reach anymore (smiles wistfully). I wished I could work outside of home and drive a car. If I could travel, I would love to go to Europe to take in the sights and sounds.
Recently, I went on a staycation at Sentosa organised by Star PALS, which was a lot of fun. We visited the Trick Eye Museum, the S.E.A. Aquarium and the beaches. Right now, I focus on living one day at a time. I hope I won’t have to be hospitalised again!
5. Any words of advice for other people in similar situations?
Try not to think too much, though I’m not immune to that either (laughs). Sometimes we just need a little imagination to divert our attention away from the limitations of reality.
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