Amalah is a woman in her forties who fell from her brother’s shoulders when she was a child. In that moment of play when her head hit the ground, her emotional development came to a crashing end. Medical professionals told Amalah’s parents she would remain forever with the brain of a five year old. In the world I grew up in, this is a sad story. And still, it is a story with hope.
In the world I grew up in there is hope because there are options. Options and access. Options on treatments, specialists, and ways to ensure tragic accidents do not mean there is nothing more. In my world there is hope for the possibility of more than the initial diagnosis because there is access to rehabilitation, therapy, programs, and support for caretakers. But Amalah did not grow up in the world I grew up in. Amalah grew up in Northern Iraq.
One of the many side benefits to living with the people you work with is that you hear things in passing you might never otherwise hear. A simple “How was your day?” while brushing your teeth with a colleague at the same bathroom sink can leads to revealing information.
One evening while brushing and rinsing with a colleague, I asked the question, never expecting that this time the response would be life changing. The nurse began to tell me about a patient she had seen in the displacement camp with one of our doctors. They had gone on a “shelter visit” because the patient was unable to come on her own to our clinic. It was the first time my colleague had seen the patient, but according to the doctor, our medical and mental health teams had been working with her for a few weeks.
“The smell was awful,” the nurse said putting down her toothbrush to reach for a hand towel. “The place was dirty and the injuries were bad.” “What was wrong?” I asked, knowing something was very wrong because this particular nurse was experienced and had seen a lot in her travels. She rarely spoke about her patients. “She had been chewing at her wrists and the bites were deep. Also, the chain around her ankle was rubbing the skin raw.”
“The chain?” I asked, forcing the tone of my voice to remain calm and level. She looked directly at me and said, in a voice as calm and as level, “She was chained to a tire.”
Now stop just for a moment and imagine. You are brushing your teeth and a colleague, while brushing her teeth right next to you, mentions that she provided medical treatment to someone that day who was chained to a tire. What do you do? Think about it.
Me? I stood there with toothpaste dripping from the corners of my mouth and down my chin. Time at a standstill. I focused on absolutely not doing what I wanted to do but only because past experience had proven it would not help. I needed more information and could not risk scaring the person in front of me. But oh how I wanted to yell. How I wanted to throw my hands on her shoulders and shake the nurse senseless. To scream and demand to know, “Why am I only finding out about this now?” How was it possible that after a few weeks, not a single member of the team had thought it important to tell me about a patient who was chained to a tire? And in those moments of extreme visualization I was wishing, in the depths of my soul, that I knew what to do about it.
A few more drops of toothpaste fell before I felt calm enough to ask questions in a non-scary way and get the information I needed. Then — and here is one of many parts to this story where I shake my head in complete powerlessness — I went to bed. Today I forgive myself because no matter our intentions, there is always reality. In this reality, there wasn’t anything else that could have been done that would have been helpful in that moment. That evening however, while lying in bed and not chained to a tire, I didn’t understand that. The voices in my head were loud, berating, righteous, and out of control.
The next morning I spoke to some more colleagues. Our medical and mental health teams had been working with the patient for a nearly a month. For them, while they did not like the fact that their patient was chained to a tire, they had come to accept that this was how things were. From their point of view, the patient was slowly stabilizing and there was improvement. I canceled the day’s plans and got into the car.
While driving to the camp phone calls were made to the family asking if I could make a visit. I was most welcome. The remainder of the drive was spent playing out scenarios in my mind; all of which ended with me, single-handedly, changing reality. I would let people know the error of their ways. They would see things my way. I would make noise and if nothing immediately changed, I would forcibly remove the patient from the premises and deal with the consequences later. I played out the possibilities never once considering reality.
And here comes another head-shaking part to the story and the one that hurts the most. Complete and utter powerlessness. This is the part where I try to explain why in the end, Amalah stayed where she was. This is the part where I try to make you understand what my colleagues tried to explain to me. That given the world we were living in, we were doing all we could. But it would not be until I met Amalah and her family in person, that I would understand this reality. That there was very little that could be done. We were living in a part of the world where there were few options and limited access.
Amalah had a brain injury. She was epileptic. She was uncontrollable and prone to commit violence against herself and others. She was living in a displaced persons camp outside of Erbil, Kurdistan with her family. Amalah’s parents refused to let anyone else take care of her. They refused to let her leave the protection of their love. And the fact was, where exactly could Amalah go? In Kurdistan there was one facility for such cases and that place was over 100 miles away and even deeper into Kurdish territory. Amalah and her family are Arabs and there is a long history between Arabs and Kurds. Even if taking her to the facility was a possibility. Even if there was space in the facility. How could Amalah’s parents let their daughter go, without them, to a place they had learned to fear?
After introductions, tea, and emotional discussions filtered through a translator with the family and a Sheikh from the same village, I was invited to meet Amalah. This was not a family trying to hide their truth and reality. Their doors were open to anyone who could help.
I followed Amalah’s mother, the only person Amalah would take food from, to a room. Amalah’s mother was well into her eighties and walked bent over at a 90-degree angle from her waist. How much longer I wondered, would she be able to feed her daughter?
Approaching the room, the smell hit first. I remembered the conversation from the night before. Amalah’s mother invited me through the door and there, lying in the middle of the floor, was a woman curled on her side who weighed less than my eleven year old niece. Amalah was covered with a sheet. The family asked for more clothes because Amalah rips them off and destroys them. Amalah’s back was to the door and I walked around to see her eyes. Her hair was matted and in her face. Her mother reached down to brush the hair from her eyes, something mothers automatically do for their children. Amalah was awake but non-responsive. Her eyes lost in a haze. She laid there, allowing her mother to adjust the sheet on her body so I could see her injuries. All I could think was, “This is real.”
Amalah’s mother spoke in Arabic. I didn’t understand the words but knew she was asking for help. She was asking for help with medication for her daughter and herself so she could continue to take care of her daughter. Just the medication. She would do the rest. I wanted to tuck Amalah under my arm and run. And in my mind I did. But only got as far as the first checkpoint. Run where? There was nowhere to go. I then began to let go of my reality to understand and accept this reality. It was time to understand what the options in this reality were.
One. Our teams would be able to do a lot more if I didn’t offend the family by trying to forcibly take their daughter away. They were opening their doors to our medical and mental health teams for weeks now and wanted our help. If I could keep my judgment and opinions in check, their doors would remain open and we could continue to help Amalah.
Two. There were other agencies working in the camp. Agencies who specialized in protection issues like this case. We could talk to the other agencies and get them involved. They could provide support to the family in non-medical ways that would hopefully serve to improve the family’s conditions so they could then improve Amalah’s conditions.
Three. In that moment, I couldn’t think of a third option. This reality was beyond my comprehension and I was struggling with the fact that I was about to walk away, having changed so little and not at all sure how I would explain what I had seen.
“Shokrun”, I said, thanking the family as I left and then asking if I could return later with others who might be able to help. They welcomed us to come anytime. The Sheikh escorted us to the camp gates. He was quite happy with how things had gone. He had known Amalah all her life and the attention being given to the family was much appreciated. He then asked if we could help some of the other families in the camp. “Others?” the translator asked the Sheikh for me.
The words that came back in translation made my head hang, once again, in powerlessness. “Yes. We have a family whose youngest son sniffs gasoline and a family with a child who is also violent and uncontrollable. Can you help them too?” I took a breath and lifted my head to look at the Sheikh and in the calmest voice possible said, “Of course. Let’s see what we can do.”
Over the weeks and months, the teams worked with Amalah and we saw improvement all around. Our doctors visited Amalah weekly until the physical wounds on her wrists and ankles healed. Our psychiatrist continues to monitor Amalah, provide medication that calms her, and works closely with Amalah’s mother to understand what she sees so adjustments can be made. Our psychologist visits the family to see how else we can help.
Another aid organization was welcomed by the family and they also monitor the case and work to improve the living conditions for all in the family. They speak with the family on cleanliness, provide additional blankets and other supplies, and ensure they are informed about their rights as displaced persons. And throughout, the family continues to welcome the assistance that comes their way. Making room in their days for the suggestions and ideas, then making changes in their own habits.
As Amalah’s condition stabilized and as her eyes came into focus, I learned more about the many others suffering from mental health issues where hope and options are in short supply. Whether accidental, genetic, or the result of trauma, care for those with wounds that can’t be seen is a long-term and unpredictable endeavor. I came to appreciate the professionals working in the field of mental health even more. I find them to be remarkable because they trust in time. They know it is not a matter of cutting something out and stitching things back together again. It is instead a matter of constant care and many small steps.
And still, I ask myself how does one come to a place of acceptance that in this reality, improvement means clear eyes, a state of calm, cleanliness, and being chained to a tire only sometimes – not all the time? To a place of understanding that Amalah’s family loves her. That their greatest wish in their world of limited options and access is to protect her from herself and from those may not understand and love her as they do.
And there it was. That third option I couldn’t think of before: to recognize our powers to create hope and accept that improvement takes time. Sometimes a lifetime.
Médecins Sans Frontières (MSF), also known as Doctors Without Borders, is an international, independent, medical humanitarian organization that delivers emergency aid to people affected by armed conflict, epidemics, natural disasters and exclusion from healthcare. MSF offers assistance to people based on need, irrespective of race, religion, gender or political affiliation.
In 1998, MSF formally recognized the need to implement mental health and psychosocial interventions as part of their emergency work. Mental health care is a part of services for HIV/AIDS, tuberculosis, nutrition, sexual violence, and during disease outbreaks and disasters. Additionally, specialized clinicians treat severe mental illness however this accounts for a minority of the cases that MSF sees.
MSF’s mental health care aims primarily to reduce people’s symptoms and improve their ability to function. Often this work is done by local counselors specially trained by MSF. MSF psychologists or psychiatrists provide technical support and clinical supervision. When appropriate, MSF’s counseling services may reinforce or complement mental health care approaches that already exist in the local community.
Needs are high, and MSF continues to expand its mental health programs.