By Kelly Lytle
Some phone calls you wish you hadn’t picked up. But you know you would have received the news anyway.
I had one of those calls today, which is part of the kind of work we do at Mosaic. Working with vulnerable people can be incredibly rewarding, meaningful and motivating. But some days, it’s very tough. It’s better, though, if I tell this story from the beginning.
The first time I visited our Moshi 2 center in Tanzania, as I walked up the patio on the side of the building, I came across a boy in a wheelchair. I stopped, kneeled down to be at face level, and looked into two dark, soulful eyes that changed me. Perhaps it was the smile I received back, or the depth of emotion in his eyes, but it was a very profound moment.
Profound enough, in fact, that I took out my camera and took a photo. It’s the photo right here. It’s the moment I met Isidori. I knew nothing about his history, but in that moment of just the two of us, there was a strong bond. Being non-verbal doesn’t mean a person can’t communicate. Isidori communicated more to me in that moment with his eyes than many verbal people I’ve known in life have with thousands of words. In an instant, it was obvious Isidori was a very special soul. Yes, I believe in love at first sight, and can say I loved Isidori immediately.
I learned more about his story, and it was almost beyond belief. When he was nine, he set out on an adventure to climb on the metal roof of his mud brick home. He slipped and fell off. In doing so, he broke his pelvis, his legs, his back, hip and many other bones. He sustained what we would likely call traumatic brain injury. His parents pulled him into the house, and laid him on the dirt floor in a dark corner, fully expecting that he would die. They, like millions of people in Tanzania, lived in abject poverty and did not take him to the hospital. They didn’t call a doctor or provide him with any pain medication. We don’t know why – perhaps it was a lack of money to pay for such things. So Isidori laid in pain in the shadows.
But he didn’t die. He fought. All on his own, with nothing to soothe his pain, he fought and he lived.
Isidori’s mother left the family. Eventually his father brought home a new wife. Then his father left, putting the full responsibility for Isidori on his new step mother. He could not move, feed himself or speak to let his needs be known. Like so many people with disabilities in Tanzania (and many other countries), he was simply hidden away in that dark corner, laying on dirt day after day. Over the next 12 years, TWELVE years, he was locked away in that mud brick house. At one point he was put in an outdoor shed with animals to live. At another point he was left in a closet and not fed. Eventually he was brought to our program. He was 21 years old and weighed 26 pounds. I realize you had to read that last sentence again. I realize it seems physically impossible. But that is the case. This young man, emaciated and having suffered both physical and emotional pain all those years because of shame and stigma put on people with disabilities, came to us in an unbelievable state.
At first he could not move himself, and laid in the bed at the day center all day. He would often cry. He couldn’t communicate his needs. His physical health was frail and the first focus was on making him stronger. He received medical services and two nutritious hot meals a day, like everyone in his day center. The center director, Shaeli Urassa, became his angel on earth, to quote our international field director, Meghan Hussey. She took him under her wing, nurturing both his body and spirit back to health. She made sure he had clean clothing. She was instrumental in making sure he had alternate living accommodations with other members of his family. She visited every weekend, holiday and any other day he was not at the center, to ensure he was out of harm’s way. We worked with Shaeli to get Isidori additional nutritional supplements so he could continue to become stronger.
During the past year, photos and video have poured in of Isidori smiling, sitting up and pivoting all by himself in bed, feeding himself and his ever-growing appetite! He went from gaunt to just extremely thin. We noticed with Shaeli that in one photo, Isidori actually had cheeks! We all celebrated each and every milestone he hit. He celebrated his 28th birthday this year surrounded by his friends at the day center, including the young children who loved to sit with him on his therapeutic bed and play with him. Isidori was no longer living a life of loneliness, hunger, pain and desolation. Isidori had friends, the love of his caregivers. Isidori even learned to feed himself his favorite treat that Shaeli would bring for him now and then – M&M minis. His physical and emotional health were healing.
This is the purest joy there can be working with children and young adults with disabilities, who live in places where they are shunned, marginalized and abused. To see them succeed, to see them overcome, to see them prove wrong those who dismissed them as just a burden, is the great reward of the work. Every time Isidori looked through his picture book and pointed his long, elegant finger to a picture to communicate a need, was a victory we shared with him!
And then my phone rang today.
It was malaria that took him in the end. Despite the most valiant efforts to care for him, despite the medical care he received while he was sick through our healthcare program, despite all of it. His health was weakened from years of abusive neglect prior to coming to our program. He tried once more to fight, but it was not to be.
There is no one thing to blame, except the poverty that keeps the latest, greatest drugs to treat malaria out of Tanzania (many drugs simply aren’t available there.) We can also blame the life he lived for 12 years between ages 9 and 21. But blame doesn’t change it.
There are three things I know, from behind my tears and sadness, as I type.
1. We have to keep working hard. We have to keep bringing in more children with disabilities, younger children, so that no child with a disability like Isidori has to live the life he did all those years. We have to keep telling the story, so people know how vital this work is and want to support it. We need more support. We have to keep fighting, like Isidori fought.
2. Isidori knew love, kindness, happiness and the feeling of pride in his accomplishments during the last seven years of his life. It doesn’t make up for what he suffered – nothing could. But he knew he was no longer forgotten. He died living a life where people laughed with him on good days and stroked his cheek on bad days. He didn’t die alone in a shed or a closet. And for that alone, we will continue to work hard.
3. Isidori no longer feels hunger or pain. I know he is in a better place, with the God who made him, the God who sustained him all those years, and the God who has now brought him home to rest. And one day, I will see Isidori again. I will know his sweet soul immediately, and I imagine embracing him, smiling, and seeing those beautiful eyes again as I say, “Hello again, my Tanzanian brother.” I want him to know we continued the fight.
In his honor.