Did you have a smooth pregnancy when carrying your son?
Did you use alcohol, cigarettes or other substances during pregnancy?
Were you separated from your son at a young age? At how old and for how long?
Does he know his biological father?
How is his relationship with his siblings?
Otis... do you know where you are now? How many schools did your son change as a young child?
When did your son stop bed-wetting?
Otis.…ebu count the days of the week backwards.
These are just a few of the many questions Mama *Otis (not real name) answered during the history taking session at Mathari Hospital by the psychiatric nurse in training, supervised by her clinical assessor from Kenya Medical Training College at the facility. Mama Otis did not care whether they were 20 or 2000 questions. All that mattered to her was that he was finally admitted. I had received a call from a psychologist working on a project in Mukuru slum when someone told her of a woman nearby in desperate need of help. When she was finally brought in... she cried for 2 hours before she could speak. Her son Otis was an extremely bright boy in school, polite, hardworking, helpful and loved by everyone. At 12 years he started having behavioural issues and challenges in his school performance. In class 8 he got only 90 marks but refused to repeat the class. She took him to a welding class. He said it was hurting his eyes. She asked him what else he would like to do but by that time many things he said didn't make sense. She turned to look at the beautiful drawings he did, on papers that he stuck on the wall. She chose to believe that God was still drawing his story and would not allow her to carry any cross heavier than widowhood.
He started doing casual construction jobs and would bring her the 350 he earned for the day. She kept it until he started asking for flour in return for his earnings. Then he would go around the slum asking if anyone had seen his mother, so that he could give her the flour. He would walk from around 8am to 8pm when he would walk back home. With time strange behaviours became the order of the day. Pouring black used car oil on all the clean clothes in their single roomed house. Breaking every single glass item in the house. Overturning the table sending food freshly served in the air. Then they would start cooking again from scratch. He talked of people walking on the roof. He wondered why his mum couldn't see the people who were following him. He banged the mabati wall shouting to their neighbour to put off the radio when no radio was on. He fought with neighbours. Sometimes he or they got hurt.
Mama Otis continued to pray. When she got tired of no answers, she went to people who she was told could pray better than her. She paid for prayers from different apostles with power to break different madhabahus (demon altars). They whispered that there was no way mental illness and death could fall on the same family without her having sacrificed him to the devil. With time she upgraded to prophets. Starting with small, medium, then bigger prophets with bigger pockets. The ones who could break the tougher kind of sugu madhabahus that were combined with strong generational curses. Others said it was witchcraft. She sought solace in her fellow women. They ignored her. She paused a threat by no longer having a husband. In the meantime, life continued to happen. Her teenage daughter got pregnant, so she saved and built a small mabati house next door to rent for the upcoming bills. However since her culture does not allow her to live with her son in the same house after a certain age, she gave it to her beloved Otis. She furnished it with a bed and non-breakable dishes. The following day it was an empty room. He threw the mattress in a nearby river. He would come back every day with stones. The house was filled with many many stones and his human waste on top of them.
One day a lady living in the same slum that she barely knew, told her that her son had a similar problem when he was 14. That she had taken him to Mathari Hospital and after being admitted and taking drugs for a short while, he got healed. So in 2017, she took Otis to Mathari. It was during a doctor's strike. He was given an injection and sent home to take tablets, but he refused to take them. When she finally walked into the psychologists office, she broke down from the huge burden on her shoulders. The psychologist recommended going back to Mathari but she said didn't have the strength to go again. The psychologist called me and asked if I could talk to her and encourage her as a patient at Mathari myself. I had a long phone conversation with Mama Otis and we planned to meet at the hospital the following week. She told me with excitement that her fellow community health workers would help her to bring him. The ones who she had always met with bright and early to help or rescue other children with different health crisis in the slum for many years. That morning however, they all switched off their phones. She paid 3 men to help her put him in a taxi and to the hospital. They asked for more money to stay with her at the hospital, so she let them go as I arrived.
Finally…I met Otis. A very calm and friendly young man with a killer smile. He gave me many stories as we waited. For many years as patients and families we stood in line for hours in the scorching sun. That day however, Mathari Hospital had finally put some benches under a tree as they prepared to build a new shaded waiting area which is now complete. It is such a great relief we are truly grateful for. Otis has such a captivating smile that it doesn't matter if his stories add up or not. Otis smiles and you believe him. When we were called in he picked and carried my handbag. I told him I needed him to get better urgently so that I can take him home to my parents. That I was sure they could not say no to a gentleman. He held the bag closer and he gave me a bigger smile. I was finished. They only allowed two in due to covid protocol, so I waited. I had already prepared Mama Otis to list down everything he had done in the past that seemed off. To give more information beyond saying ‘tuvituko vituko' as she was used to. To list both big and small issues. I explained to her that a lot of misdiagnosis happens because patients or family members usually mention the one or 2 major recent behaviours that are irrational. Not knowing that even the small things like hearing a non-existent radio 10 years ago, will help with the right diagnosis and treatment. I told her if she felt uncomfortable to speak, she should tell daktari. That she would find other people in the room who would be students who are practically learning about mental health because it is a teaching facility. That she could leave the sensitive issues she felt would make Otis uncomfortable for the very end. Then she can request to tell the doctor as I waited with him.
While waiting I wished the psychiatric patients list had been as short as the dental patients list as we had waited for five hours to go in. I thought of the many toothaches I have had in my life. How they always seemed to start aching on Thursday night before Good Friday. How I could not sleep in peace throughout Easter. How ginger, mara moja and jivu were kindly donated even by my enemies. Then on Tuesday morning when the dentist finally called my name, the pain would go back home. How similar it can be to mental illness. That your patient can give you no peace night & day for a year. Then when they get there they carry your handbag and smile. Then the chances of admission reduce to 20%. During most of the Covid period, that chance reduces to 1% because wards have been at very limited capacity to reduce covid infections. Meaning that only the most severe of the severe have mostly been admitted. Definitely not the ones who smile or carry handbags. My fear was confirmed when Otis was not deemed serious enough to be admitted in comparison with much more dramatic patients. While admission is not the ideal solution, for delayed interventions for many years causing severity of illness, the change of environment and treatment with close monitoring is usually found necessary. The doctor advised that if he totally refused medication again, they would admit him in 2 weeks. He refused to be injected but the sweet words of a loving mother & a potential wife prevailed.
At the gate, Otis refused to go home with his mother. He insisted he did not want to enter a matatu going that direction. She gave him fare and he suddenly ran as fast as his legs could carry him. No one panicked. Any bonafide member of Mathari knows you do not chase a person with mental illness near a road with cars. She turned casually to me and said ‘let us eat’. So we entered the canteen. We ate and talked only as 2 women who mental illness has shown things in heaven and on earth can. When we were done Mama Otis walked through the route that her son had run. With the drowsy injection we expected he was likely to have rested somewhere along the way. She didn’t find him but he found his way home by the time she woke up the next day. For 20 years she had learned the hard way how to sleep not knowing where he was. Caregiving grew her the skin of a crocodile, complete with blood, sweat and tears of desperation and resignation. After 2 weeks of refusing drugs we were back at Mathari. This time the three other men who brought him insisted on staying, even after we kept asking and threatening them to leave. We knew they would demand for more money but they literally refused to leave. After seeing the doctor we went to the ward followed by a hospital security guard who has witnessed 18 wonders of the world when patients walk calmly until they reach the ward entrance. Surprisingly Otis was very calm even as we went in. As Mama Otis answered the intake questions, I was busy answering yes for myself in my head. When I have doubts if I have a mental health condition, it is usually confirmed in these intakes. Otis showered for the 1st time in almost 3 years. He hadn't looked that dirty before, but he looked so different... much lighter. He was shaking with cold like a leaf. He said he had never been to such a place. He was on and off understanding where he was and why. At some point Mama Otis turned and walked away fast, half running. I caught her quickly and convinced her to stay. The same way patients experience an urgent fight, flight or freeze response on admission, caregivers sometimes experience the same. I once took a family member to hospital and as I left I froze and sat in the middle of a road at around midnight. Totally confused and overwhelmed. I held her hand and she held his, sitting in the sun until he stopped shaking. The nurse introduced Otis to Paul, ‘the lead patient' and told him to ask Paul for anything he needed. After reality sank that he was staying behind, he gave his mum his house keys and told her where to find his phone. Yes, probably the 19th wonder. We told him we brought him because we care for him and that we would be back to visit every week. I told him patient rule number 1, what you do not properly sleep on till morning does not belong to you. So we gave Paul some bananas and asked him to take care of our Otis and his red slippers. To sleep on them for him until he could sleep on them for himself after the drowsiness. We were glad that Otis liked Paul.
We left and sat outside the ward to breathe a little. We talked freely and deeply with another woman whose son was also admitted. We shared about the challenges of caregiving. About the consistent physical and emotional fatigue, doubt, anger, bitterness, loss of independence, loss of finances and economic opportunities. Guilt of what we could have done wrong and loss of the dreams we or our loved ones could have achieved without illness. Why God allows such pain. Then we acknowledged that life gets easier when we share struggles and try to let go of what is beyond our control. I taught them the serenity prayer. Mama Otis finally breathed out heavily and removed the very heavy sweater she hadn't realised she was still wearing in the hot sun. In the middle of the night she woke up overwhelmed with many confusing emotions. She thanked God that for the first time she knew for sure where her son was and for protecting him through the years. 'Please grant me the serenity to accept the things I cannot change, courage to change the things I can and wisdom to know the difference.' she prayed. Mama Otis has a casual job where she was only able to get an off after 2 weeks. So we alternated visiting Otis every Wednesday and updated each other on phone until he left after 2 months.
My greatest highlight was when I told him to ask the doctor the name of his illness and what he does that confirms it. When I came back he told me. 'Mimi niko na sitisosofenia kwa sababu naonanga, naskianga, na naaminingi vitu haziko. Lakini mi niko poa, ule Karis aki ni chizi. 'I have schizophrenia because I see, hear, feel and believe things that are not real. But I am good. Karis there, is really mad. Give me the mandazis I hide them. I share with others but they do not share with me. Tell mum to bring me chapati. Tell her I miss her and I have healed now. I want to go home.' My lowlight was Mama Otis' discouragement that her son was not healing as fast as she expected. Having to remind her often that delay in treatment means the illness becomes more severe, harder to treat, needing more patience. That it was not her fault. That she did what she knew to do then and out of love. Reminding her to celebrate small wins like Otis showering and being aware of routine without being reminded. That chronic illnesses like diabetes and mental illness are not healed, but managed. The word 'heal' is common with persons with mental health conditions and their families even during treatment due to deep-seated religious beliefs. The recovery journey has just begun 20 years later for Otis and his mother. Only time will tell where their story leads as they live one day at a time.
The journey of a caregiver is assumed to end when the patient reaches the hospital, but in many ways it is just the beginning. A caregiver is usually as well as their patient and vice versa. If you see a family in any health crisis, please offer to walk with them even for one day. It doesn’t require special skills… just your presence, compassion and empathy. Just as you have no idea what to do, sometimes neither do they. It could be easier for you to think of each next step because you are less burdened with emotions and fatigue. Figure it out together. Look around you. Help an Otis to get help as soon as you see irrational mood, thought or behaviour. Thus promoting outpatient care and reducing the need for admissions. According to the Kenya Mental Health Policy, people centred interventions should be organized around people’s needs. Hence, providing family centered services to support both patients and caregivers is necessary. The policy and the National Task Force on Mental Health report further recommend the development of locally contextualised community based programs with reintegration support. Traditional and religious bias still greatly affects access to mental health services in Kenya today. In this particular case it would be helpful to train community health workers and religious leaders in slums to identify, intervene, support and refer. Current mental health advocacy is saturated on social media and mainstream media, needing to be extended to grassroot and vernacular stations to reach lower income brackets. As part of reintegration, Otis needs to be supported with social and economic empowerment to enable him to actively participate in his family and community.
So tell me... what interests you most in the story of Mama Otis & her son?
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