Pili: 'One more chance'
Pili Akili lives in Nangwala, a farming village in the Newala District near the east coast of Tanzania. Pili is in her mid-20s and has had bipolar affective disorder for the past four years – a type of mental illness characterized by episodes of extreme mood swings.
When asked to describe being mentally ill, this is what Pili had to say: ‘Hearing disturbing voices, just wanting to walk aimlessly, roaming the streets till midnight and making noise everywhere. I felt restless, I couldn’t settle in any one place. When I was in this situation, my younger brother, Hamza, would forcefully tie my arms and legs with a rope. I struggled very hard to resist them tying me up, and sometimes I tried to tear the ropes away, as a result of which I got repeated attacks of chest pain. My mama would just stand there watching sadly. Look, the scars left by healed wounds in my arms and legs.’
‘I remember one time my mama took me to a traditional healer. The healer wrote an Arabic text on white paper with red ink, then dissolved the paper in a bottle of water and instructed me to drink the solution.’ Pili also mentions that some traditional healers whip their patients under the pretext of whipping spirits.
Her mother Rose says: ‘As carers, we don’t have a choice. We try any alternative remedies we can find. The problem is money. I have taken Pili to several traditional healers. Her illness still keeps relapsing.’
The community also often responds in humiliating ways to aggressive behaviour from a mentally ill person. ‘A mentally ill person in this community is almost nothing in front of people,’ declares Pili. ‘You are useless and nobody will listen to you when you are mentally ill. I don’t care about what they say. I do a lot of things on my own. I cook, fetch water from the well, wash my clothes, take a shower and sometimes I go to the farm.’
'Nobody will listen to you when you are mentally ill. I don't care about what they say. I do a lot of things on my own'
Pili used to be in secondary school until she fell ill. Talking about it she suddenly bursts into tears. ‘I feel so bad that I didn’t achieve what I have always wanted. This is because every time exams approached, the illness would not stop disturbing me. This made it difficult to achieve my expectations. I am determined to pursue my studies if I am given one more chance.
‘People keep telling me that if I go back, my illness will relapse. I wish I could be doing something now because if I don’t, my life will be even tougher.
‘I have tried several times to apply for a job with no success. They keep telling me that nobody will accept me with my poor grades. I think I should go in for self-employment like tailoring, or something like that.
‘I think about reappearing for my secondary school examinations, but who will pay my school fees for me? My mama is so overwhelmed by my brother and my sister. My father doesn’t seem to care about the family.’ Pili’s father abandoned the family nearly six years ago.
‘We have a small cashew farm, but as you can see, this harvesting season we are expecting almost nothing from it. My mama had no money to buy sulphur [used as a pesticide] and she didn’t have enough time to attend to the farm because of my illness.’
Pili is now on medication which she gets from the district hospital. Wanting to re-connect with life, she feels thwarted by people warning her of a possible relapse if she attempts this.
‘Ever since I have started taking drugs from the hospital, I am doing well, only I feel dizzy and tired. I have stopped taking the medicine for about two weeks now. Look, the drugs are making me very fat. I don’t hear voices any more, I do settle in one place instead of walking aimlessly down streets.’
Piyasena spoke to Thilina Surath de Mel.
Piyasena: 'In the right place in the real world'
Amarakoon Disanayaka Piyasena lives in a village in the Angunukolapalessa region of southern Sri Lanka. Now 41, he was diagnosed with schizophrenia at 19. Piyasena was ambitious and a bit of a dreamer at 16, his head filled with plans of how to get rich. Having to re-sit an important exam led to a lack of interest in schooling. He began to occupy himself with plans to make a new house.
Manikhami, his mother, says: ‘At that time we were really thinking about building a new house. But these never-ending plans of his made us a little suspicious. We saw that he made notes in a couple of dozen notebooks. One day when he was away from home we opened them and turned over the pages. I was speechless. They were filled with childlike drawings which made no sense.’
Looking back the family realizes that they had missed early signs of his illness – staring at nothing for a long time, looking towards the road as if expecting someone, occasionally talking to himself. They took him first to an ayurvedic doctor who laid the blame on stomach problems. When this was no help, they took him to other doctors 150 kilometres away. But Piyasena didn’t trust Western medicine, refused medication and became more aggressive.
‘Our neighbours and the villagers gave us tremendous support,’ says Manikhami. ‘When he started running around the place, people brought him home. Nobody was scared of him and no one tried to harm him. When we needed to take him to a hospital they gave us their vehicles free of charge.’
Piyasena had to be admitted to a psychiatric hospital 250 kilometres from his home. He stayed there two weeks.
‘Everybody in the hospital was nice,’ Piyasena reminisced. ‘Patients live with hope. Hope is a good thing, you know. Hope will make us free. Doctors visited us once a week. And everybody was waiting for the day when they would be discharged. It was a bad place. If you go there it is not easy to come out of it. Society will label you as a crazy person and they will try to keep you inside as long as they can.
‘One day I thought I would escape from there. Hope will make you free; fear will make you a prisoner. I didn’t have a plan to work on. But one night I jumped over a high wall surrounding the hospital and got my freedom. I went to my sister’s place in Wattela.
'If you go to the hospital it is not easy to come out. Society will label you as a crazy person and they will try to keep you inside as long as they can'
‘I wasn’t sure what I was doing. I didn’t have money to pay. But I remember I ate something on the way to my sister’s place. And I travelled in buses. It was like walking in a dream. But in the end I was in the right place in the real world.’ His sister Premawathi loved him too much to return him to the hospital.
‘I tried to control myself without medicines. And it really did help. My illness was under control up to a point. I knew that if I thought about something, more thought than it really needed, I would be in trouble. So I didn’t think about anything seriously.’
Not long after, his parents arranged his marriage without informing his wife of his past troubles. The marriage ended in divorce and another spell in hospital for Piyasena. But this time he was more willing to countenance medication. Today he is back in his village, sticking to his medication, and helping his younger brother who is a carpenter. For the smaller jobs he doesn’t charge any money, preferring to earn the goodwill of the village community in which he lives.
These testimonies were gathered with the full consent of Pili and Piyasena in order to promote greater understanding about mental health issues. They were recorded by BasicNeeds, an international NGO that works with local organizations and the families and communities of mentally ill people to offer help and ensure the protection of their rights.