Yismaw Tilaye would sit outside the hut, because to stand would bring tears to his eyes — partly of pain, and partly of who knows what emotions inside.
It was assumed the boy wouldn’t live long. No one said it, but what was there to say? A one-room mud hut in a village no one cared about in the remote mountains of Ethiopia is not where nature goes to be kind.
The disease that had dug claws into Yismaw Tilaye’s body had a name but it was unknown, as was its treatment. Yismaw called it a curse, and wondered if God was punishing him.
The pain slithered into his life at age 12 and stayed day and night. It nested in his back, his legs, his buttocks and his joints. For two years, he would haul himself outside and watch other children go to school, which he couldn’t do because of the hour-long walk. Then in the afternoon, he would watch them return and go off to play their games.
He would sit outside the hut, because to stand would bring tears to his eyes — partly of pain, and partly of who knows what emotions inside. He had no pain medication, not even aspirin, and no therapist to wipe his psychic tears.
At one point he was told his affliction was tuberculosis, but it was just a guess, and a wrong one.
He had his Christian faith, and he prayed — oh, he prayed — for the pain to ease.
The circular hut’s diameter was about 25 feet. The kitchen was a corner on the hard-packed dirt floor. The outhouse was incomplete. The “out” was there, but the house wasn’t.
He slept alongside his mother and three sisters. He lay spread-eagled, with arms and legs outstretched and his head flat. That discomfort was nothing compared to the pain it slightly eased.
Pain is made worse by the loneliness of it. You can’t share pain. You can’t even describe it; there is no language. You can only feel it, and that’s personal.
Severe pain for a boy of 12 would be far worse because their years would have given no warning. Grown-ups know pain is a part of life. But for a child, there is no experience to know how mean life can be.
Pain that doesn’t quit, doesn’t ease up ages you. It makes your soul turn gray.
Yismaw Tilaye remembers, “I used to cry because it hurt so much. My joints were inflamed. I couldn’t stand on my foots because both were very painful. And my knees used to swell up. So I used to walk on a stick and I barely touched my foot, especially my right foot was very bad.
“All the people felt really sorry and despaired and they greet me with sad face and sad look. It’s like almost everyone thought that I had no hope, which makes me very miserable to live there, because I need hope.
“Yeah, just everyone was waiting for my day until I die. I see them crying. I feel my pain so hard, but seeing people crying because of me, it was the hardest thing.
“So when the kids run and climb trees, I just remember everything that I used to do with them but no more.”
Yismaw Tilaye slept little because every movement would hurt. For hundreds of nights, he stared at the blackness of the grass roof and listened to his mother weep for her son’s misery.
The daily meal — yes, singular — was sort of a burrito. The unleavened bread was called enjera, like a slightly rubbery and sour tortilla. It was filled with a mash of bean paste and whatever vegetables might be available. That was called shiro, and it had to last until the morrow.