Finding a reason to carry on
I spent the night in La Isla with Maudiel and his family. If you remember from my last post, Maudiel is very, very ill with Chronic Kidney Disease. He is 19-years-old and has lost numerous family members to this disease.
He looks and acts like one of those people who wouldn’t hurt a fly. He wouldn’t. We arrive for the interview and he comes out of his house with a smile that betrays the exhaustion he is feeling and tries to hide as he carries over chairs for us to sit on.
Can you imagine what it must feel like to know you could die any day when you are only 19? Maybe some of you can. I can’t. I was thinking about what it must feel like to fight back this fear everyday. The anxiety shows in his eyes. However his worries are more focused on his family. Everyday he tells me he feels anxious because he has to stay home and wait. He is too sick to weak to work and help his family. His eyes fill with tears and he looks away when he tells me, “[I am here today, you see me right now, but tomorrow I could be gone.]”
Yet my time spent with this family was full of welcome and affection. Maudiel’s mother Tina, hugged me so tight. They all went out of their way to make sure I was comfortable and had enough to eat when they live day to day with barely enough to get by.
Their photo albums are notebooks with pictures stuck between the pages. So many of the photos show funerals, caskets holding loved ones who have died.
Just to explain a little bit: when someone has CKD (Chronic Kidney Disease) their kidneys can no longer filter waste from their bodies. This creates an insufficiency of creatine in the body. Creatine is produced in the kidneys and gives the body energy. That is why when people are ill with the disease they fell extremely weak.
We woke up this morning to a tremendous downpour. There is a hurricane in the pacific and it brought down heavy rains all day in Nicaragua. Small rivers formed in the yard, at times the rain was coming down so hard you could barely hear. Tina, Maudiel’s mother didn’t have to work this morning because of the storm. But she worked all day. She made us breakfast, a typical Nicaraguan dish called Pinto de Gallo (rice and beans blended together), she washed the ropa by hand outside under a tin roof, her daughter Tanya helped her rinse the maiz to make tortillas. Her sons carried big buckets of dirt into the outdoor kitchen to fill the puddles in the dirt floor made by the rain. Chickens and starving dogs ran in and out of the outdoor kitchen and the house. In between all of the tasks that had to be done the kids played games, showed me photo albums, asked me for words in English and joked with one another. Maudiel stayed inside most of the time, swinging in the hammock, talking with his siblings. He told me he was happy today because no one had to go to work. He wasn’t alone in the house and the whole family could be together.
Maudiel is sick. His father and grandfather died of this disease, his uncles. Three of his brothers are sick and probably one of his sisters. Two of the four girls work cutting sugarcane as well. Tina tells me, this is work for men but they have no choice. Both of their husbands are too sick to work. One of Tina’s daughters committed suicide when she was 15. I visited a family a few houses down who had just lost their father a few days before to the disease.
I had to remind myself that I should not allow myself to be sad when Maudiel is smiling even though death is all around him and inside of him. So I drank my coffee and ate my Gallo Pinto with Tina and I talked with Maudiel about what it was like to fly in planes. I listened as his younger sister described family memories as she pulled out album after album, pointing to another family member telling me “Y tambien se murio por la Creatina.” (And he also died of the Creatine).