Hope is what we carried from Kampala to the northern part of Uganda. Hope is what the victims of nodding disease and their families desperately needed. Hope is what we gave to those people who faced the daily struggles and hardship that afflict the Nodding Disease victims. As the caravan organized by Uganda Women’s Network (UWONET), The Association of Uganda Women Lawyers (FIDA-Uganda), Isis Women International Cross-Cultural Exchange (Isis-WICCE), Action Aid International Uganda (AAIU), Institute for Social Transformation (IST) in correspondence with various other women’s organizations and individual women activists left the central part of the country – Kampala, none of the staff knew what we would see while working in the districts of Gulu, Lamwo, Pader, and Kitgum.
Starting our work in these four northern districts, the nodding disease caravan witnessed numerous cases of malnutrition, burns, rape, sexual assault, lack of education, and lack of medical treatment all of which can be directly attributed to the continuing problem of nodding disease that has wreaked havoc on the village members all along the countryside. To add further complication to the problems already associated with Nodding Disease, the cause of this problem is still only speculated upon by Ministry and government officials all of which had little proof to support their speculations when interviewed by caravan team.
In every clinic, parish meeting, village health screening, and treatment center visited, the caravan arrived to the downtrodden and utterly defeated stares of men, women, and children. All of which are Ugandans who already face the struggle to thrive with minimal assistance from their fellow countrymen and their government, yet are plagued with the added problem of a disease that mentally and often physically cripples their children. A disease that has torn families apart and driven a wedge between once happily married couples. A disease that has stripped the affected children of their future by leaving them incapable of learning in schools. A disease that has robbed young men and women of their very lives by leaving them unable to nourish their bodies with food that is already scarce in their villages.
It was completely heartwarming watching those faces so devoid of emotion come to life after they realized we brought with us concern for their welfare and assistance gathered by their fellow Ugandans. Gathering the stories of how this disease is affecting lives of individuals, families, villages, and entire communities helped us form a better understanding of nodding disease. Letting those persons who have faced continual hurt share their stories with us, and in turn with the rest of Uganda, brought smiles to faces that were once on the verge of desperate tears.
Hope, the one thing we all need to be able to face our hardships and to overcome them. Hope, the only light shining in the darkness of our struggles. Hope, the one part of our humanity that is most crucial to our survival. Hope drives us to work harder. Hope pushes us through the hurt we feel. Hope keeps us alive, for without hope we begin to lose ourselves piece by piece until we are a mere empty shell of what we once were and what we could be. We arrived to see victims without hope. Hope is what we carried from Kampala to the northern part of the country, and hope is what we left with each person we met along this transformative journey.
Robert Lorenzo Elliott IV
Intern at UWONET / B.A Hospitality and Tourism Management student at Purdue University
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