Surviving Ebola: The real battle begins once you’ve beaten the disease
By Fatou Wurie
Ebola is an infectious and generally fatal disease. It’s marked by fever and severe internal bleeding, spread through contact with infected body fluids. The countries of Sierra Leone and Guinea on Africa’s West Coast have been especially hard hit with about 4 000 people dying since the start of the outbreak a couple of years ago. The writer participated in the recent Writing for Social Change Workshop in Kampala – an annual event of The African Women’s Development Fund (AWDF) in collaboration with FEMRITE, the Uganda Women Writers Association.
Five years ago I was sexually assaulted and I call myself a survivor. I live in a country where this word survivor is thrown around like confetti. Just another term for global consumption. A euphemism for scars, underneath which lurks the pain of the Ebola Virus Disease (EVD) outbreak that hit Sierra Leone.
There is a silver lining to the horrific experience. Not everyone died. But now we have to face up to a reality that survivors are often re-victimised. People lack a rational explanation. Lack a sense of agency to deal with the trauma. So their responses become irrational, and often cruel.
As a survivor of trauma I know this all too well. For those, especially the women, who have survived Ebola the real battle has just begun. Now they have to pick up the pieces of their lives.
Mamusu Mansaray, a 30-year-old, is animated. We sit across from one another. She bounces around a bit in her chair, attempting to make herself more comfortable. She recalls her experience, talking repeatedly about the fear.
“When I began to fall sick I got scared to call 117 (emergency service). We heard that those who were taken away by Ebola ambulances didn’t return. And when I finally found myself in an ambulance and taken to a treatment centre I was so, so scared that I would die in the ambulance like everyone else. I was sure I was going to die, laying there in the ambulance with other people who were sick too.”
Fear often paralyses one during a crisis. This is what I recall after my own assault. Fear nested in every crevice of my body. Fear paralysing the physical pain yet amplifying the experience enough for it to be forever etched in my memory. I remember the feeling of becoming just another statistic. Then feeling calm in fleeting moments. But soon the tears would appear of their own accord. But for the most part, I remember feeling incredibly scared. The journey out of physical pain was a long and arduous one, with symptoms that till this day appear unexpectedly. The road towards emotional recovery? Well, it will take a lifetime. Perhaps.
Rabiatu Kalokoh is 23 years old. She contracted Ebola through a pastor’s anointing oil while treating a pregnant girl that was ill in her community. She remembers:
“One morning in the bathroom I started bleeding heavily down there. I knew it wasn’t my period because it wasn’t the time. I called for my grandmother who got angry and asked me what I had done to myself. I told her nothing, I hadn’t done anything but she was really angry at me.”
Women & Girls Most Vulnerable
In the role as primary care-givers culturally and socially, women and girls are most vulnerable during health epidemics. In Ebola outbreak in Sierra Leone women have also been the least supported as effective social mobilisers, as health workers, as community leaders and now as survivors.
During the Ebola outbreak heroic acts surpassed gender, tribe, race and nationality. It has been a case of humanity acting for humanity. Yet, women and girls remain the bearers of the burden. Bone-deep existing social issues like high illiteracy rates, frail health care systems and gendered economic disparities were thrown into sharp relief due to Ebola. Adequate social, economic and political, gender-targeted responses to these social fractures have been slow. It has made ‘surviving’ the disease only half of the battle for many women who have contracted Ebola.
Women in Sierra Leone were disproportionately affected by Ebola because of gendered roles within our society. We are the primary custodians of care for our families and communities. In the health care system women make up the majority, acting as nurses and maternal and child health aids (MCH) in community clinics and larger hospitals.
Flawed Health Care
Nurse Adiatu Pujeh’s story is a testament to effects of a health care system that delayed providing adequate Infection Prevention Control (IPC) training and equipment to health care personnel.
Adiatu walks with a limp and a spark in her eyes. Meeting her for the first time you know that she is one who beats the odds every time. She and four of her colleagues, all female nurses, contracted Ebola in November 2014. She is the only one who survived.
“Three days after I was discharged and came out alive, I went back to work. I didn’t want anyone else to suffer the way I had suffered. I went back to work. Look, I’ve survived a car accident and have a plate in my arm and I have survived Ebola. God clearly doesn’t want me yet! So, even though it has been very hard, I am still here and will continue to do what I can to save lives”.
As survivors of trauma we gravitate towards others. Extending understanding and empathy becomes part of who we have become. I choose to play my part in assisting women and young girls who have survived Ebola through art and advocacy with the hope that something good, something positive could grow. Reaping a positive harvest from an experience that dances with death.
Survivors & Shame
After my own assault I was surrounded by resources, colleagues and access to counseling that initiated the process of healing. I was completing my studies at university. In short I had many more privileges and access than many women in Sierra Leone will ever have. Even then, self-inflicted shame prevailed in social structures that either boxed me into a rape statistic or demanded I prove an unassailable narrative. But the experience to this day remains fragmented, culturally damaging and personally dehumanising.
So much has been asked of Ebola survivors. To share their stories, to utilise their experiences for social good, to speak when requested to speak, to become caricatures of the trauma or not speak about it at all. The women and young girls in our programme, The Survivor Dream Project, are Ebola survivors who have relayed feeling isolated and betrayed by people close to them. Their most intimate experiences are made public for intake without tangible, sustainable social support.
Adiatu the nurse still feels stigmatised:
“I filmed my story when I just came out of the treatment centre and after that, I could not go to the market for months. Every time I go to the market they call me the Ebola woman. Even at work, where I caught the virus it’s taken a while. I still get the looks”.
As a survivor of another type of traumatic event these realities resonate with a deep understanding that the Ebola Survivors of Sierra Leone face heightened social structural barriers; access to quality health care, quality education, safe space for dialogue and sustained economic support.
Survivor Dream Project
This is how The Survivor Dream Project came to be. It is our way of exposing the hidden reality of ‘surviving’ which is the ability to pick up the pieces of life when all is destroyed. It is about designing a localised programme to assist in building capacity for women and girls who have survived Ebola to become economically empowered. To address the lack of access to quality health care services and to cultivate a safe space for heart-to-heart skin-to-skin discussions. It is about supporting women and young girls garner strength to push through stigma and not be defined by Ebola, to not remain a statistic. Most importantly, to remind our policy makers and the world that we still fail our women, we still fail to cultivate social systems conducive to gender based right to dignity, social and economic growth and empowerment.
The Survivor Dream Project is about nourishing the dreams of our women in the programme. Five years from now, where will the 20 women in the project be? What type of positive change would have occurred? In what part of their bodies and psyche will this trauma reside? These questions for any survivor are difficult to conceptualise without a safe space and system dedicated to nurturing them, so that it becomes possible to envision a future where they did not only survive, but bloomed.
You can follow Fatou Wurie’s writing at her blog http://www.fatouwurie.com/fatou/