Eleanor Yap
When schizophrenia hits, it not only affects the person itself but also the rest of the family. In the case of 43-year-old polytechnic lecturer, Danielle Lim, she got to witness her uncle’s (affectionately referred to as Ah Gu) struggle with the illness, as well as her mother’s difficult role as a caregiver and the sacrifices made by her grandmother (who later committed suicide).
As a way to shine light on schizophrenia, which affects the normal functioning of the brain including thinking, feelings and behaviours, Danielle decided to recollect that time between 1961 and 1994, when she was growing up, in a book called “The Sound of SCH” (pronounced S-C-H). That time was also when Singapore was quickly globalising and the stigma surrounding those with mental illness sadly remained deep-seated. Her book won the Singapore Literature Prize (Non-Fiction) 2016. It has also been translated to Chinese and published in Taiwan.
ProjectCare chats with the author about this crippling mental and social disease, and her hopes for the book:
What made you decide to write this book in the first place? Why not fictionalise it instead? What were your main goals for the book?
This story has been with me for a long time – I wrestled with it in my growing years. If it can help others seek treatment early, affirm caregivers, and prod society to treat those afflicted and their families with more respect, then my mum’s and uncle’s struggles would not have been in vain. It is a true story, so fictionalising it did not seem right.
Why call it “sch” as people may not know what it is at the first glance? What about the rest of your title?
I understand it may be a baffling title for many; how do we pronounce it, what is sch? Precisely, schizophrenia is baffling and not understood, both neurologically and socially. What is it? So, I hope that readers will come to understand the illness better by reading the book. “Sch” also represents other sounds in the book, which I hope readers will appreciate after reading. Hence the line in the book – “Can a life weave along through the same notes and yet come to play forth different sounds?”
Beyond telling of your uncle’s struggles, it also showcases the duty and sacrifices made by your mother and grandmother. Can you share more about this and what others should do when faced with a loved one with schizophrenia?
When the illness becomes chronic, the entire family suffers, and the burden on the caregiver’s shoulders is a very heavy one. My mother took care of my uncle for 30 years. Caregiving of any kind – for a mentally-ill family member, a special needs child or sibling, or ageing parents – is a tough job, and caregivers deserve greater support, affirmation and acceptance.
My uncle’s story took place between 1961 and 1994. There have been steps forward since then: In Singapore, a National Mental Health Blueprint was adopted in 2007, and various initiatives have made some headway. These include more partnerships between general practitioners (GPs) and the Institute of Mental Health (IMH) in caring for patients and managing mental illness in the community, educational and outreach programmes as well as a Caregivers Support Centre spearheaded by IMH, and other laudable efforts by community organisations such as Silver Ribbon, Singapore Association for Mental Health, and Club HEAL. There is the Agency for Integrated Care’s mental health network called CREST and COMIT, which looks at mental health conditions and dementia for the elderly. The Caregivers Alliance (CAL) is also doing wonderful work supporting caregivers of the mentally unwell.
There is a fine line in deciding whether to care for them with the help of medication at home or to admit them to a hospital. What was the approach your family took in making this tough decision?
This is a judgement that requires advice from a doctor. My mother had to take my uncle to the hospital when there was a relapse of the illness every now and then, but other than that my uncle carried on with life at home with daily medication.
When did your uncle get diagnosed with schizophrenia? What are some of the signs and symptoms?
He was diagnosed in his early 20s. Schizophrenia tends to strike at a young age, usually between 15 and 30 years of age. It is not ‘split personality’ as is commonly thought. It is a mental illness that disrupts the thought processes of victims, resulting in strange behaviours, emotional confusion, or outbursts. Some hear voices or see things that do not exist; others are suspicious of those around them, at times to the point of paranoia. The illness causes sufferers to lose touch with reality.
In my uncle’s case, he would smile to himself, make certain repetitive actions with his hands, start throwing things away, or become disorientated, but he was never violent.
Did you or your family know much about schizophrenia at the beginning?
No. This happened in the 1960s and there wasn’t much awareness back then. Even now, there needs to be more awareness.
Through your book, you encourage those at risk to seek help early on. Was this something your uncle did and why is this important? Is there a cure?
My uncle did not get treated early enough. Due to the stigma (extreme fear or belief that mental illness has to do with retribution or evil spirits) associated with the illness, my grandmother refused to let him get treated at Woodbridge Hospital at the time, and instead took him to bomohs (Malay shaman). This did not help him recover.
Early treatment is crucial, as doctors have emphasised and research has shown that early treatment helps to prevent relapses and increases chances of recovery.
What are five lessons you learned from having gone through this “life journey”?
Seek medical treatment early. Support and affirm caregivers. Respect, accept and help reintegrate the afflicted after rehabilitation. For me, I have also seen great beauty in brokenness, in the lives of my uncle, mother and grandmother, which I tried to bring out in the book. For example, through all the suffering and loneliness, my uncle never complained.
Mental illness brings a whole lot of stigma and fear in society and in one’s family circles. Can you share what your uncle experienced particularly with regards to this? What is your wish list moving forward? What should Singapore and other countries do more to bring further awareness on this topic?
My uncle led a terribly lonely and isolated life, from scholar to sweeper, his whole life devastated, just like that, and he suffered a long time.
I hope that through this book and other initiatives, there can be greater understanding and awareness of mental illness, so that society respects the dignity of those who suffer.
Do you know how many people suffer from schizophrenia in Singapore? Has it increased over the years and what are some of the reasons for this?
I do not have yearly statistics, though it is generally recognised that schizophrenia affects about one in 100 people in most countries, including Singapore. The World Health Organization (WHO) has estimated that 26 million people worldwide are living with schizophrenia, but the effects of the illness affect far more people – particularly the families who often have to look after them.
For mental illness in general, which includes not just schizophrenia but also depression, bipolar disorder, anxiety disorders, etc, WHO estimates that one in four people globally will experience a mental health condition in their lifetime. This means 450 million people worldwide.
Can you share further on any updates on your uncle?
My uncle passed on in 1994.
** The book can be purchased at major bookstores or at Ethos Books’ website (www.ethosbooks.com.sg) for S$18.60. More information can also be found at www.danielle-lim.com.
