Not even the omniscient Google can explain this mysterious rare condition.
32-year-old Marianne Liaw Sook Huei has never really been in good health since young, but just when she thought things couldn’t get any worse, a bizarre degenerative disease dealt her another blow in 2013. Like a crumbling house of cards, Marianne’s very own body would experience a lifetime of uncontrollable falls and knockdowns.
The first symptom of this puzzling affliction swooped upon Marianne five years ago in church. She collapsed on the day she was engaged to her now-husband, Daniel Chow Kee Chong.
The doctors she consulted struggled to figure out the cause, the explanation eluded them despite their years of medical experience. Eventually, she was somehow prescribed the right treatment. The doctors could only conclude that her heart was in a worrying state.
Marianne on her wedding day in November 2014 at St Mary’s Anglican Cathedral, Kuala Lumpur.
A year after she got married, the fainting spells became worse and her physicians soon realised this was beyond an ordinary heart disease. On any given day, her blood pressure could drop dangerously low. After several more tests, doctors informed her that she had a rare autonomic nervous system disorder and her health was in a downward spiral as the nervous system controls many organs in the body.
With no cure in sight, the disease had gone on to damage her intestines – to the point where it caused her pain almost always when she eats. Hence, she eats only one meal every night. One year ago, she lost her eyesight and is now legally blind.
“I live in a world where everything seems really blur… I can’t really see anything unless it’s super close-up and large,” describes Marianne as she adjusts her black sunglasses, which has become a permanent fixture on her face. Asked how she felt upon the discovery of the debilitating disease, Marianne was unexpectedly calm. Her strong Christian faith has kept her emotionally anchored. “At first, it was just uncertainty. We honestly didn’t know what to expect but we had the comfort in knowing that God was in control of the situation and that we would take everything step by step, ” she said.
Currently working as a youth ministry worker in an organisation called Scripture Union located in Petaling Jaya, Marianne is passionate and loves her job so much that she doesn’t consider it as a job. She finds absolute enjoyment and delight in interacting with and teaching youth about her faith in God. Despite her physical limitations, she speaks and motivates young people in schools, camps and events. Embracing her adversities, she translates her fears and worries into faith and trust in God. By this, she has inspired and touched many hearts by sharing the concept of letting go of what is uncontrollable and instead, having faith to overcome obstacles in life – “I’m a person that can’t sit still, so being out and about is always new and exciting for me,” she remarked.
Marianne speaking at the National Anglican Diocesan English Youth Camp in December 2017 held at Jeram Besu, Pahang.
Instead of blaming God, Marianne counts her battle as a blessing in disguise. Of course, there were multiple moments when she felt like throwing in the towel, just like you and me. She has learned to develop patience and tolerance, to slow down, reflect and appreciate the smallest things in life as she picks up new skills and adapts to the challenges thrown at her by this incurable malady.
Moreover, her loving husband Daniel, whom she stresses is a great gift from God, has been holding her hand throughout this roller-coaster experience. He willingly supports and helps her 24/7 tirelessly and doesn’t confine Marianne to the perimeters of the house, although her infirmity demands extra effort in simple tasks regular people take for granted, like taking the train. While Marianne lives her life expecting the unexpected, she said, “I don’t know how much time I have left. So, I live each day to the fullest and accomplish what is worthwhile.”
She advises those who feel like they are suffering, be it physically or mentally, to not isolate themselves but to surround themselves with positive vibes. Come what may, Marianne is determined to win her battle by being an inspirational testimony to those who are in misery. At this point, her looming death is no longer something she loses sleep over. Marianne has only one constant reminder to herself and the rest of humanity – “Don’t waste your life!”
Marianne’s resilience teaches us to appreciate the little things in life and to live in the moment. After all, we only have one life. Make it count!
