TODAY marks World Mental Health Day. It’s a day to raise awareness, advocate against social stigma, and educate people on the realities of mental illness. But for me, it holds a far more personal meaning.
One in four people will be affected by a mental health or neurological disorder at some point in their lives. According to the World Health Organisation (WHO), around 450 million people currently suffer from such conditions, making mental disorders the leading causes of ill-health and disability worldwide.
I did not know how deeply my life would become affected by this statistic. My mother suffered first from depression at the age of 66, and seven years later she was diagnosed with bipolar disorder.
During her first episode, my father had a wrong-site surgery and was kept in a medical coma. I was their only child and had just delivered my second child. We were running between house and hospital on a daily basis, torn between the care of an elderly comatose man, and a newborn infant.
Several months later, it became apparent she had lost significant amounts of weight, and could not sleep. She came to me one day and said clearly – “you need to take me to a psychiatrist”. I laughed it off, and got her a counsellor and a reflexologist, thinking some self-care would do her good.
She came to me again, and said that was lovely, but now you need to take me to a psychiatrist, because though I had a beautiful day, all I could think of was jumping off the stairs.
Fortunately, we were able to get ourselves to a good psychiatrist who was able to diagnose her with depression, and the drugs she was prescribed worked. They worked so well, in fact, that no one knew she had an episode at all. She was on meds for two years until she was gradually weaned off them.
Seven years later, she broke her wrist and became home-bound. We all expected her to recover and regain her good cheer and health, but this episode was to send her spiralling downward.
She again asked to see a psychiatrist. But was put on a new set of drugs which did not agree with her. She spiralled further into psychosis. Her mind was aflame with all sorts of negative scenarios – that her grandchildren had perished, her house had burned down, that people were knocking at the door, and the hordes were there to take her away.
She convinced herself we hadn’t paid our bills and our water and electricity supply had been cut-off. She could not see life as it was. She could not see that everything was okay. She would later describe the time as being in the darkest of the dark pit, where everything was pitch black.
I could not understand it at all. My mother had been a public school teacher, an independent and cheery woman. She would be up before all of us, and having performed her early morning prayers, would have a big breezy smile, loudly wishing us all good morning.
She was transformed into this block of wood. Frozen. Unable to think and move.
I cajoled her, reasoned with her, argued with her, was stern with her, was angry with her. I demonstrated to her the water supply was there, the electricity was running. I read the good news in the newspaper. And yet, she would return to the dark.
At one point, things got so bad she was unable to bathe, to go to the toilet, to eat and I had to do everything for her and with her. My two children still remember a time when we would all sit around the table and I would feed the three of them.
For me it was a terribly taxing time in my life. The psychiatrist diagnosed her with dementia. I disagreed with him. This was a new terrain for me altogether. I had to read a great deal to understand the different signs and symptoms so I could interpret them better. I had to find a new psychiatrist. We experimented with different types and dosages of drugs to find her the right mix. With each new mix, different side effects would emerge that needed to be managed.
I had used up my one month’s worth of annual leave to take her through the intense period. I had no choice but to urgently find a caregiver for her.
It was not easy. Private nurses were not only expensive, but most of them wanted her to just sleep all the time or requested a helper to assist them.
Relatives, who probably meant well, were constantly pressuring us with questions, evaluations, recommendations, and theories of their own – one of which spiritual possession.
This is a reminder for all of us to open our hearts and allow people to talk about their #mentalhealth without judgement.
— WorldMentalHealthDay (@WMHDay) October 3, 2018
Everything came back to me to be solved. I had the full responsibilities of work, of running a household, managing the kids and the oversight and care of a patient with a mental disorder.
I had to think differently about how I approached the situation.
I learnt to appreciate that this was not an illness that would be over in a month or two, like a bad flu. I had to pace myself. I had to cut down my travel schedule as every time I travelled, she would get into a high anxiety phase. I had to keep a diary and close watch. I had to create a rigid schedule, which included daily exercises, writing and walking. We had to monitor both dips and rises in moods.
It took almost one year to achieve some stability.
These days, we are on a more stable path, but there are still bad days. We learn to live with them.
We forgive each other – for her lapses and for mine.
Some days are stressful – she refuses to do her activities, or she gets highly confused. And then there are the good days where her sense of humour and optimism returns. And I see a glimpse of what she was.
Sivananthi Thanenthiran is the Executive Director of the Asian Pacific Resource and Research Centre for Women (ARROW). She co-authored “Reclaiming & Redefining Rights: The Status of Sexual and Reproductive Health and Rights in Asia and the Pacific” in 2009 and 2013. She has presented papers on sexual and reproductive health and rights at the UN in Bangkok and New York.