The story of a schoolgirl who grew into womanhood even as her family struggled to find cure for a life-long mental condition
The village of Phanas (also known as Phanasi) sits on the uneven and a rather difficult incline in Ngatsang gewog in Mongar. It’s a lovely village with friendly, almost shy, residents whose homes are scattered and stand aloof from one another. Outside one such home, during certain hours of the day or night, passersby may witness a woman struggling alone in violent fits, raising a living hell.
I am in Phanas on a consulting assignment for the health ministry’s rural sanitation and hygiene programme. The two local health assistants and the newly elected village representative accompany me as we tour the village interacting with people about their newly constructed pour-flush toilets. As we prepare to call it a day, Ngatsang’s health assistant, Pema Wangdi, asks me if I may want to visit a special home close by.
“They’ve a mentally sick daughter who lives caged outside the living quarters,” he tells me. “It’s a desperate situation at times,” he adds, “especially when the woman goes into extreme fits. One time the mother told me that the daughter had matted her hair with her own menstrual blood.”
I decide to deviate from my assignment, and we walk downhill towards an isolated farmhouse. It’s already getting dark when we arrive there. And it’s cold, with a fierce wind slicing the landscape. What strikes me as we finally reach there is a little cabin, the size of a bathroom, attached to the family kitchen. It’s made up of several upright planks nailed onto a wooden frame. Plastic sheets and other rags are used to stop the wind from entering through the gaps between the wooden planks. Inside the makeshift cabin, 36-year-old Tshering Lhamo is, for now at least, in a state of peace.
Some time around 1993 (the mother struggles with her memory), towards the morning, in a classroom in Mongar Primary School, 13-year-old Tshering Lhamo stuns her classmates with an unusual behavior. She acts violent and she screams, scaring her friends. Soon she’s taken to the Mongar Hospital. That’s the end of her school life. Indeed, Tshering Lhamo’s life and mental health spirals downward from thereon.
Undergoing a series of referrals, from Mongar to Thimphu to Vellore in India, the young girl’s life vacillates between highs and lows, between violence and peace, between life and near-death state. Her family and relatives take her to all the renowned lams in Bhutan and Sikkim. Some of the lams attribute her condition to her past karma. They tell the family to perform numerous rituals. But her condition fails to improve.
“Life has been a constant struggle ever since,” says Tshering Lhamo’s mother Yeshey Seldon, 56, who separated from her husband just before the daughter fell sick in 1993. “It’s been about hope and despair, about holding on, and about not giving up even during the most difficult times.”
Today, after 23 years of being mentally ill, Tshering Lhamo doesn’t recognise food from her stool. She eats both. She doesn’t know water from her own urine. She drinks both. During menstruation she paints her face with the blood. She screams. She laughs. She cries. She destroys anything she lays her hands on. She sleeps for long hours. Sometimes she eats like a hungry lion. Other times she goes without food and water for days. She defecates and urinates in the bed. Her arms and legs are tied tightly so that she cannot move around or escape.
As her condition failed to improve, the family relaxed about her medication. It became erratic, and then it stopped. To make things more complicated, the family has not maintained the daughter’s medical records. The last time Tshering Lhamo took medicines was in 2014 when HA Pema Wangdi took upon himself to help the patient. But even that stopped since there was no constant supply of medicine from Thimphu.
In December 2014, Tshering Lhamo was taken to the Mongar Hospital to see a doctor. But she became violent when she saw many people and it took six men to suppress her aggressiveness. She was sent back home without much help. In Vellore, the mother says, she beat up doctors and nurses and broke medical equipment.
Back in Thimphu I ring up Dr Damber K Nirola, a senior psychiatrist at the Jigme Dorji Wangchuck National Referral Hospital. At his office I recall to him what I had witnessed in Phanas. He tells me he knows many cases where patients are being caged or kept in isolation with their hands and legs tied up.
Dr Nirola says Schizophrenia is a life-long debilitating disease that often starts early in life. Unfortunately, people want patients to recover fully, and when that doesn’t happen, they lose hope, and they give up.
“The woman in Phanas seems to be going through what we call disorganised peace and behaviour,” he says. “That’s when patients cannot differentiate food from stool and urine from water. They are totally detached from reality.”
Doctors insist on continuous medication if the patient is to live a decent life. There are medicines that calm patients down and rein in violent behaviour. For patients like Tsehring Lhamo a monthly long-acting anti-psychotic injection could possibly improve their condition.
There is no record of how many people in Bhutan suffer from Schizophrenia, but the general principle is that about 1 percent of people in a society could be suffering from the condition. In Bhutan, the problem certainly persists. For example, the 2016 records reveal that 26 people were diagnosed with Schizophrenia and other acute psychotic disorder at JDWNRH alone. While there is no reporting system from remote parts of the country, Dr Nirola feels a certain proportion of patients do need intensive treatment, possibly at their doorstep.
The Ministry of Health started its Mental Health Programme in 1996, but its outreach service is still weak. There are only four psychiatrists in the country. There is need for counselors, occupational therapists, trained nurses, and outreach workers. The Ministry put together a Mental Health Strategy in 2015.
“To begin with, we’re mostly focusing on education and sensitization,” says Mindu Dorji, Programme Officer at the Ministry’s Mental Health Programme. “We also want to deal with the issue of social stigmatisation.”
The Strategy focuses on training more people like health assistants and nurses at the periphery, educate and sensitize traditional healers, and train local leaders. It also puts emphasis on establishing basic facilities across the country.
For patients like Tshering Lhamo and her careworn mother Yeshey Seldon, after a long struggle for some sort of a miracle, life is now about a modicum of security and dignity. They have not only run out of options, but also face social stigma. For example, passersby avoid their home. Yeshey Seldon and her 28-year-old son (who quit a teaching job to support his mother) are constantly stretched out on resources. There is no community support system either.
As a compassionate Buddhist society that values human dignity and happiness, can the state make things better for these forgotten people? Could the state provide the families with such chronic patients with some safety nets?
“It’s indeed unfortunate that we’ve not been able to do anything for them,” says Dr Nirola. “We must strengthen our mental health programme, make it something like what we did with leprosy. We must eventually build a cadre of mental health workers.”
Can care-and-rehabilitation facilities, say sanatoriums tailored on Bhutanese value system, with trained caregivers be a solution then?
“Certainly,” says Dr Nirola. “It will be expensive but it’s doable. If we can get all these patients together and give them a decent life, there’d be nothing like it.”
Such facilities provide a therapeutic environment where patients are treated with respect and utmost consideration for each patient’s needs and comfort. There would be physicians, trained medical assistants, nurses, matrons, and domestic staff. Patients are tranquilised when they go through violent spells, but are allowed to take walks and engage in light skills development when they are normal. A caregiver is assigned to each patient.
Yeshey Seldon is clearly worn out. She gives bath to her daughter almost every day. She cleans her daughter’s waste. She cleans the messy bedding frequently. She places food and water in her daughter’s cage, and waits patiently for her to eat. In her daily prayers she begs Gods to end this living nightmare.
Yeshey Seldon has lost her daughter. Her violent husband, a lay monk, left her soon after the daughter fell ill. (Phuntsho, who has remarried since, has never shown his face again!). And she’s losing her place in the community.
Despite the mental anguish that she goes through every day, there are episodes of love and tenderness that Yeshey Seldon cherishes.
“Sometimes, when she is at peace, Tshering calls out to me from her little home. She says: “Ama, Ama…Jang tha cha (Mother, Mother…I am here).’ I wish the moment would last forever because that’s the child I’ve lost,” she says.
Yeshey Seldon falls into a brief reflection, chin cupped in her hands. Coming back to reality, she adds, in palpable fear: “There will be no one to look after her when I am gone.”
Gopilal Acharya is an independent consultant and a freelance journalist. He can be contacted at firstname.lastname@example.org or at 17666222.