Welcome back - Living with mental illness and epilepsy in Liberia (EN)

Welcome back - A documentary about living with mental illness and epilepsy in Liberia
Des enfants affligés d’un mal étrange. Des familles désemparées. Des voisins méfiants. Des rumeurs qui se répandent, celle d’un mal contagieux, des histoires de sorcellerie.
Psychose, anxiété, bipolarité, épilepsie… des personnes souffrant de problèmes / maladies ? mentales reprennent la parole et racontent leur histoire. Des diagnostics posés trop tard, des soins insuffisants, mais des histoires de guérison aussi.
Ce documentaire raconte comment on vit au Libéria quand on est atteint de l’un de ces maux. Le parcours du combattant des familles pour soigner leurs malades, la stigmatisation, la difficulté de trouver des médicaments. Et puis la stabilisation, le quotidien retrouvé comme un horizon autrefois impensable, aujourd’hui à portée de main.

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Unique Identifier Code / URN MSF323893

Date taken / Date Recorded 03/02/2020 12:00 AM

Country Liberia

Commissioning section MSF-FRANCE

Photographer / videographer / producer Armelle Loiseau

Usage Rights (MSF) Internal Use Only

Formal Consent Copy available no

Editor's rating ★★★★★ (C)

Video format h264 (High) (avc1 / 0x31637661)

Duration 35m34s

Maximum Size 1920px × 1080px 1.57 GB

Additional Information / Shotlist Bill Jallah
We wanna tell our stories today so that maybe something in your story is the very thing that needs today to develop some confidence. So we want to open the floor for you to tell your story as you feel led, ok? So the floor is open now for recovery story.

Zayzay Jones
I have two different ages. My birth age and my mental illness age. I am 44 years of age and also 19 years with my mental illness age.

Benjamin Ballah
My parents did not know what was happening. I just went off hand started running all over the street. Took me to the traditional healers.

Edward Holton
Also I have a message to all caregivers, parents and whatever, be it Liberia or other part of the world. Do not get the child today maybe is mentally ill and then to look at them and say “Oh he is a crazy person, he worthless, there is no use”. No in society, everybody have use. We have use. It depends… If you the caregiver, taking good care of the person, I guess he can come up wellness like me or even more than me and become somebody in the society.

Bill Jallah
The story you tell helps another person.

Zayzay Jones
What am trying to say here is this. You can be me.
Accept your condition, you never bought it. It was not for you alone, share your idea with people. Do not feel stigmatized.

“Welcome back”
Living with mental illness and epilepsy in Liberia

Synthé Monrovia

Abraham Kollie, psychosocial worker, MSF
At the community level we are involved with awareness raising. We discuss signs and symptoms of mental illness, including epilepsy. How can maybe the community members identify someone who may be living with mental condition? How can they come to clinic, and how they can be able to help people that are mentally sick? So this is our message. When we go about doing this, we start to receive patients.

Ibrahim
We are going to see one of our patients, that has been with us since 2017.
He’s an epileptic patient who was heavily stigmatised when he was in school.

Ibrahim
How’s everything?

Since I’ve been visiting the clinic, everything is ok. I’m taking my treatment regularly.

Ibrahim
Ok. That’s great. And that’s what we always come to remind, so that you can continue taking your medication regularly.

Amuchin
Sure.

Ibrahim
Does that mean that, has there been anything during this time?

Amuchin
No, not at all.

Henry (Amuchin’s father)
When you see it happening to him, you feel very bad. Because it would knock him down. He would be stiff. The hands alone, you cannot hold him. And he would be chewing his tongue, blood coming out, knocking his head down like this. That alone, when I saw this I got confused. I didn’t know what to do.

Ibrahim
Do you feel stigmatised? Does that mean that people tried to stay away from you people because of Amuchin’s condition? Is that what happened, really?

Henry Nango, Amuchin’s father
He was abandoned by the community. Nobody actually wanted to see him in their environment, because of the problem he was going through.
But within the family, we talked to them, we made them understand that this thing is not communicable. So don’t panic. This thing won’t affect you. We talked to them, they understood. But for the outsiders, they always had that notion that this thing is communicable, no matter what happens, if the man drinks in a cup and they drink in that cup, it might affect them.

Amuchin Nango
I can remember, that was 2010.
I can remember, I came from school, I went on the road to my friends.
And then we were standing on the road in the afternoon.
And then I fell down.

Henry (Amuchin’s father)
He said he saw something like a ball rolling to him, like it shoot an arrow. He saw it coming to him, directly coming to him. He wanted to dodge it, but it was too late, and it hit him. So he dropped to the ground.

Amuchin
What happened that same day is that I didn’t wake up.
Because I fell on my head.
That whole day I slept.

Henry (Amuchin’s father)
Sometimes during daytime, it would knock him down four or five times. When it happened to him, he would be weak as anything, helpless. He would sleep all day. That’s was how it started.

Amuchin
I experienced seizure on campus three different times. Even the principal had problems with it. Lots of students got problems with it when I went around campus. Some of them were provoking me. I told my mother, no need for me to attend here.

Henry (Amuchin’s father)
So we started going from place to place for solutions.

Amuchin
We went to Firestone.
From Firestone we went to Grand Bassa.
From Grand Bassa we went to neighbouring Sierra Leone.

Henry (Amuchin’s father)
Go this way, pay 200 dollars. Go this way, pay 150 dollars. Go this way, bring white bucket. Bring this, bring that... Traditional ideas…

Amuchin
My father paid lots of money, bought a lot of things, bought goats and we even went as far as prayer people. They played their parts. God comes first.

Henry (Amuchin’s father)
You don’t give up. For me sometimes, it used to happen to me that I sit and think, what can we do now, can we just give up, can we forget about the man here, to die? No! Come on, get up, let’s go! He got to get up. We go find solutions, from place to place. You don’t give up. You gotta continue knocking the door. And that door will open one day.

Ibrahim
I must admit this is a very awesome family. For you to remain as strong as you are, to continue to give him the support, it’s something that most family wouldn’t be able to do so easily. We must appreciate that.

It’s a difficult journey. When your family comes down with mental condition, especially epilepsy, which comes under mental conditions, maybe because it’s associated with the brain, there are a lot of stigma.
They’re wanting to see their family member getting better. They put a lot of resources and attention to whatever they say to them. Maybe the spiritual thing with the pastor is not working, the child is still having the condition, and then they will have to find other means. To the point where sometimes they go out of Liberia to seek for solution to the problem.
So it’s a kind of heavy weight on the heads of our caretakers, of our patients, whose caretakers initially took them to so many places because they wanted to get solutions to their problem.

Ibrahim
The community needs to know more. So we started going from house to house and raising this awareness. So we started to work with traditional healers, we started to work with pastors, we started to work with schools, we started to work with the churches, we started to work with the mosques, you know, getting everyone involved.

Ibrahim
Most of our patients, the first point where they seek treatment is at the church. Sometimes the pastors will keep the patients, and there are some of them that will have the idea to talk to them and also send them to the clinic. But there are some that use the patients to get money. So our activities at the church is to create awareness among the church members and say it is not bad to come to services, to come and serve god, to come and pray, but it’s also very important that when your family member is sick, you go to the hospital and seek hospital attention.

Rose Vokar, government community health volunteer
People like that, sometimes we see their behaviour to be different from we the normal people’s behaviour, right? You just see the man starts to run around the community, they are seeing things that you the normal people you cannot see. Some of them are hearing voices. You see the persons start to talk to themselves. Just talking to themselves. The open mole (local expression of distress) can also cause that.

Ibrahim
If you have such a condition in your family, in your community, or in your working place, or with your friends, then you are able to inform them. Then they can come to the Pipeline clinic where MSF is providing support so that they can seek treatment.

Mother Chuchu Banwon
Just two weeks ago, one evening, I was about to go to class, they brought a child to me. The child was jerking. Fine boy. He was jerking, he came from school with nothing, and when they looked, he started jerking, foaming from his mouth. So his mother ran straight here to the church. So I prayed. I looked at the child, and I said this thing that attacked him, I don’t know, but you gotta check with the hospital first. Let them get the child medicine, it can be malaria in the head, or something else, mental. The doctor will see that, then he will tell you.

Ibrahim
Thank you very much. We say thank you to mother. And thank you to everybody.
See you all. Thank you.

Ibrahim
The thing is, mental health in the world is new. Why do I say it’s new, not many people actually know what mental health is, so when you start to talk about mental health, especially in our setting, in Liberia, in Africa but in Liberia in particular, not many people are going to tell you that they’re aware of what happens. It’s not frequently heard on the radio. It is not discussed commonly in society, especially in the communities. It is not easily discussed. In the whole of Liberia you have E.S. Grant to be the only mental health hospital. Imagine someone is coming down with mental condition in a family that has not heard about mental condition before. Can you imagine that? They will go straight to seek solutions elsewhere, and not even think about coming to the clinic because they don’t even know what the mental condition is. The general belief is that most mental conditions is associated with some spiritual issue.

Take off your slippers. This people’s place, people can’t wear slippers to get in this place.
Knock knock!
Hello, papay? We are here!
Who are those at my door?
I bring my son.
My name is Ma-Mary.
Come inside.
My son name is Junior.
Your son has been bewitched.
And I can see that some of your family members are responsible.
And you need to do a lot of things.
I will do it.
I will need you to bring one white sheep.
I will bring it.
And 400 United States Dollars.
I will bring it.
7 packs of candles.
I will bring it.
And 16 bags of rice.
Once these things are provided, your son will be well.
Papay, thank you. All the things that you explained, they’re true.
They’re true. This boy is a clever boy!
All those things, tomorrow I will bring it here, Papay.
Tomorrow you bring it here, and once all has been delivered unto me, then your treatment will begin.
Ok tomorrow we’ll come.
But I can assure you, that you have found a solution. I am the solution. I have treated so many people with this condition, and I can tell you that everything is going to be well.

Ibrahim
In our community and in Liberia, a lot of our people, even educated people, back the belief that epilepsy is contagious and that it can be transferred from one person to another. And so we have a lot of work to do.
School-going patients, we work with their school, and we work with their family. We work with the community they live in.
We have had a lot of our patients who once were not in school, now they are in school.

Ibrahim
We want you to tell us what you believe about this condition. Yes?

School boy 1
If I go around them, or if I eat with them, I might likely get the sickness also.

Ibrahim
Thank you very much. He said his belief is that if someone’s falling down, they have this condition, when he goes around them and eat alone with them, it’s possible that he also contracts the disease. That’s what he said.

School boy 2
If a person has spell (epilepsy), and then they happen to fall, they always warn people not to go around them because of the spit that is coming from their mouth, if it happens to touch you, you can definitely get it.

Ibrahim
Another colleague, our friend here, said if someone has spell and they fall and they start to jerk, if you go closer to them and even touch the spit that comes from their mouth, it’s possible that you get spell also. Which means that he says that it’s contagious.

Ibrahim
In your community and around, have you seen it before that husband and wife live together, one person is having spell, the other person does not have? Yes? You have seen it right?
Anybody else again that has seen that? Yes? You have seen that? Good. So can we still believe that the disease is communicable? No.That’s what we want you to know. Thank you very much.

Ibrahim
What’s about the school? How do you feel about school?

Blessing Jelleh
The school, I do nothing to them, but the children keep beating me, fighting me.

Ibrahim
You have some of your friends that can be picking on you?

Blessing
Yes, they can just be picking fights with me, cursing me.

Ibrahim
Why do they do that?

Blessing
Why do they do that?

Ibrahim
Why do you think they’re picking on you like that?

Blessing
Because they don’t like my illness. Anytime I want to talk with them, I tell them you’re my best friend, I want to go to lecture with you, they will just be cursing me, saying I don’t want your friendship. Anytime I want to sit where the teacher puts me, they keep pushing me. They will tell me to move away from them. They drive me away from them. These few days they moved away from me and pushed me.

Ibrahim
So do you sometimes tell the...

Blessing
These few times I told the principal, and the principal said next time they do it, they will receive an expulsion letter.

Ibrahim
That means that the school, the principal, the teachers, they’re at least protecting you somehow right?

Blessing
Yes.

Wait, let me sing different songs.
Jesus loves the little children of the world, will never, will never. The blood of Jesus will never lose its power. Will never lose its power. The blood of Jesus will never lose its power, will never, will never. The blood of Jesus will never lose its power.

Solange Jelleh, Blessing’s mother
I was going through difficult time with the girl. Because sometimes they told us, when she goes to school, the teacher would say she’s a witch. The school started to refuse the girl.
Myself I was too confused, sometimes in the house she would make fights with us, she could take a knife and all she wanted was to kill me, she would say mama you are a witch, mama this, mama that... I was too confused. I don’t know what happened to my daughter. Since I took her to church, they say that’s a witch.

Blessing’s mother
Sometimes myself I was very embarrassed. I can go with my daughter in taxis, we go to the church or we go somewhere. My daughter in the taxis, she starts jerking, spitting come there. People standing in the taxis they saying... Some people say we want to get down, this person here, the sickness, this and that. But I would beg the people, I’d say it is not... I did not pray for my daughter to be like this. Nobody pray for your child to be born to be like this. So you get child that gets this sickness, you just need to pray God and to take medication. One day she will be all right, because you don’t know the future of that child.

Blessing
I’m feeling all right, nothing can’t happen to me again. I can’t fall down again, the way I’m taking the medicine. That why I tell God thank you. I praying, nothing can’t happen to me this time. I going to school safely. Anytime I can cross the road by myself. Nothing can’t happen to me again.

Emmanuel Ballah, MSF mental health supervisor
We have, active patients, almost close to 2,000. Active patients, meaning they come regularly, they follow their appointments, they go to all the sessions. We have two mental health clinicians and we have 5 psychosocial workers. So, the mental health clinicians support the MOH mental health clinician through consultations, assessment of new patients, follow up medication, counselling sessions, etc.
Clinician
She didn’t fall down?

Sidie’s father
No, she didn’t fall down.
Clinician
She ain’t fall down yet?
Sidie’s father
She has not fall down yet.
Clinician
Right now we are in the Christmas season. So we give you medicine for her for up to january 7.
So you take the medicine and you give it to her until January 7. So January 7 you will come back.
Ibrahim
Actually, the idea of starting the mental health project, it emanated from the survivor clinic. When we had the Ebola crisis here in 2014, after the crisis was over, the question was, there was a huge stigma at the community level towards people who survived from the disease, people who survived Ebola. They were called Ebola survivors. The stigma was such that they couldn’t go to general hospital to be taken care of. So MSF established the survivor clinic.
Ibrahim
That went on for two years. And then at the end of the two years, the stigma level was reduced, communities started to accept the survivors back... But then there were that had to do with mental conditions.
We all came up with the idea that there is need to still cater to the population, to see their emotional feelings, to see how things have affected them over the time. Remember we’ve had a 14 years civil crisis that affected people so much, people lost their family members, they are not even resettled. We have not had the opportunity for them to be reunited fully, or reconciled fully. And then we had the Ebola crisis. And then the Ebola crisis went on and it separated people so much, there were a lot of stigma, many people died, and people were living with that stress. Then we said ok, now we are in a situation where you know, things are very difficult, the economic situation is stressful, people are kind of like stressed with their situation. So I think we can try to help.
Ibrahim
We are having a lot of problems here now with this issue of money not in the bank. I don’t know what is happening, people go to the bank, they cannot get the money they save. And I just think that the whole thing is getting harder by the day.

Driver
The government already borrowed money from the commercial bank. And then people went for their money. They can hardly get access to their money. So these are the reasons.

Ibrahim
Yes but if you cannot find the Liberian dollar in the bank, then where can we find it? We had the Liberian dollar circulating, and then all of a sudden it’s lost. You go to the commercial bank, you don’t get money. You go to central bank, you don’t get money. You are given cheque, you can’t even cash it at the bank.

Driver
That’s the problem we have right now.
We don’t know where the money go.

Ibrahim
And the price of things is just rising!

Ibrahim
Even the only psychiatric hospital we have in Liberia, drugs supply is the major problem. Drugs supply is the major problem. You see a lot of patients going to Grant, they are stabilised, and when they are discharged, they will have relapse. Because, at some point in time, take for instance if a patient is placed on a particular mental psychotropic medication, and then, all of a sudden, we run out of medication. The country, the hospitals cannot afford it and they cannot get it from anywhere.

Ibrahim
We are going to one of our patients.
Her situation is actually from the diagnosis we saw at the clinic, it’s psychosis, and she has had some difficult times.

Ibrahim
Thank you very much Christiana. We know the way it was and the way it is now.

Ibrahim
When she’s due to go back to the clinic?

Next week, monday.

Ok.
So that means she still has medication, right?
Yes.
Alright.

Ibrahim
Five tablets left. And then the risperidone, we have 30. So if you check between now till next week, Monday, it would be like 7 days. And then, it’s four per day. 1, 2, 3, 4, 5, 6...7. Ok, they’re enough.

Ibrahim
Christiana? The last time we came here and you were not feeling well and you were explaining some things to us. What has been happening?

Christiana Kakar
The people under the ground sometimes call my daughter.
Right now I’m worried. I’m worried... Because in this house under the ground, I sometimes hear voices. I can hear voices that don’t have good news.

Ibrahim
The more we show love to her, the more we show care to her, the more we’ll make her to feel like she’s a normal human being like ourselves, then Christiana will get better, and Christiana will continue to improve. She will feel that, yes, I got people who love me. That’s your part, that’s your role to play.

Emmanuel
Medication, this is a national problem, not only for mental health. For TB, for HIV, for malaria, for tuberculosis, for all of the problems. The government has issues with money, with managing all of those things.
We know that no matter what we do, the government cannot provide for all of the programs, the same is going to be true for mental health. So sustainability, we still have a very big question mark, to see how it’s gonna go after MSF will have left Liberia.

Benjamin
The only way you can survive this thing is to take your medication.
That is why we are advocating for medication, and when the medication is available, please take your medication.

Bill Jallah, Cultivation for users’ hope
MSF is not going to be here forever, when MSF goes and our government says they can’t take money from their pockets and buy medication, psychotropic medications for those who have psychosocial disability, I shouldn’t be a victim.
We are in partnership with the mental health division of the Ministry of health. The way we reach out to them to advocate for ourselves and our colleagues, we go to the Ministry of health, we want to meet with our minister. We have a medication crisis all around the country and our people are relapsing. They are part of Cultivation for User’s Hope, they were advancing in their recovery, but right now, everybody is taking off their pants, and they are in the streets, in their birthday suits, and this is getting to us, and the minister needs to hear this. I know she says that mental health is not a priority, but let them kill us if that is the truth. Let them take everyone in mental health hospitals, just slaughter us and let it be finished, if that is not a priority.

Jallah
After your recovery, you’re becoming productive. Now, all of a sudden, you see yourself back to square one, as you described.

Benjamin
Relapse!

Jallah
How did you feel?

Benjamin
I felt… At that time you feel very bad. You feel like even committing suicide… You feel very bad. Because all of us here, we’ve reached this level. Then you find yourself somewhere, in Paynesville red light district or somewhere, just in your briefs, walking in the street, in underwear walking on the street. So it’s like over the years, you’ve just wasted, you’ve gone back. Nobody here wants to go back to that level again. So the only advice is, keep on the medication, and we keep advocating so that we have medication in the country. Mental health sickness is like any other sickness, they have tuberculosis, they have AIDS, other people take their medication and they’re ok. If you take your medication, you can do anything. You can go to school like me, I’m working, I go to school, I teach the kids, and the government pays me. So if I’m not taking the medication, I’m not stabilised, I will not go to school. I won’t be able to work. So you see… that’s it.

Jallah
If you can organize, and the most powerful tool you have in your organization is your recovery story. That’s going somewhere and telling people I have bipolar disorder, but now here I am. That alone is a big story.
And the purpose for our coming together, is to help each other advance in our recovery. Now the medical model would give us stabilisation. But they can’t give us recovery. They would only stabilise when you are acting funny, they chemically restrain you, they give you tablets, but it doesn’t bring lasting solution. Cultivation for Users’ Hope is a lasting solution. And we can say that with evidence. So that is the reason why Cultivation came together.

Emmanuel
Cultivation for Users’ Hope, in this aspect, they help these people to know their own value, to know their own importance. So I think they are very unique. It’s a very new organisation. Previously, this was never in Liberia. But this group I think they’re doing some good job. So we tell the patients about those in recovery, about Cultivation for Users’ Hope, and see if they could move over to them, where they are able to help them, train them, teach them how they can get money, how they’re able to go about things, taking the value of themselves. I think this is very important.
Ibrahim
It is a challenge you are having, but you have the ability to face this challenge. There is something called self-stigma. When people stigmatise you, you think this is what they say about me, what can I do? That means you agree with them. But when people stigmatise you, you say, but no, that is not true. I can be somebody important. I can be somebody great, I can be somebody like any other person, I can become who I want to become. Then it means that you are saying no to that stigma. And with your ambition to go to school, which I encourage you to continue to think about this, and to continue to work towards this, you can go back to school and become a better person.

Ibrahim
What course do you decide you want to do?

Amuchin
I want to do public administration and business.
Why I select public administration, because when I was in school, when it comes to politics, I play more parts in politics, especially in class. Because in my class they used to call me “advocator” because when something go wrong between me and my teacher, I advocate for my class. So that’s why my name there, in my class, “advocator”.

Ibrahim
So you would like to serve more like an administrator? I can see.

Amuchin
As for me I am skillful when it comes to the musical aspect, and then the football aspect. So I’ve got a lot of skills in me.

Henry (Amuchin’s father)
This boy is a very brilliant boy. He is noticed for playing football, actually. On the playing field, when he go there, on the football field, everybody is clapping for him, pass the ball, pass the ball... like that. He’s very good at playing football. That I know.

Amuchin
Things that I didn’t used to do before, like when I started noticing the falling down I never played football.
I didn’t go out among my friends.
But then I came back and I got my treatment, now I can go and practice.
Presently I’m a third division player.
I’m ok now. I am amongst my friends.
Friends who abandoned me before, who not used to eat with me before, we are eating together, doing things in common.
Friends who didn’t used to wear my clothes, they are wearing them now, coming to me. I’m doing a lot of interactions with them.
When some of them see I’m back to myself, they’re amazed. “Oh, my man, welcome back, welcome back”.
I say, my man, that’s God.

Special instructions Following the modification of one character's consent, this documentary can be used anywhere except in Liberia - meaning no use on social media/digital platforms, only screenings.

Keywords

Adolescent (12 -18 years)