My afternoon and most of my days consist of words like

7/20/2010

My afternoon and most of my days consist of words or medical phrases like, vvf, cerebral palsy, blindness, and many others. For the last five months the words and conditions have interchanged. Deaf, HIV, cataracts, maxiofacial, plastics, cleft lips, cleft palates, malnutrition, vvf, tumors, nomas, orthopedics, and so much more. The words have played a haunting melody similar to the out of tune organ I would hear at this small catholic church near my home. It would play the same chord over and over again but each time it sounded just a bit different. And I hear these words over and over again. Some days it honestly doesn’t phase me, and other days it hits so hard that I want to find a small space on this ship and just cry.

This afternoon I was emotionally struck by the VVF woman. Dry. Shouts of joy come out for such a small three letter word. Count them. D = 1 R = 2 Y = 3. Three letters. That word can be considered a curse if a region has no water and is in a drought. But this word can also have one of the most meaningful and impacting moments for the women with VVF. A half dozen woman walk down the hall of the hospital into the B ward and are dressed so elegantly and beautifully with their new dresses and are completely accessorized. And we know. We all know. Everyone in that ward and everyone that passes the open doors to that ward know exactly what is about to commence.

After years of suffering. After moments of complete isolation. After moments of not knowing if their neighbourhood would ever except them again, they are walking in testifying that they are now DRY or almost DRY.

So much different is the testimony of these woman compared to the one I just saw walking up the gangway before lunch. She was an older woman who had never been on a ship much less had walked up the gangway. Each step that she took intimidated her and she walked slower as she got more nervous. She shook so much going up the gangway that her wet napkin fell out from  between her legs. She picked up the napkin and continued to walk up the gangway to only arrive at the top, hike up her skirt, and re-adjust all over again. 

She walked in scared, humbled, and most likely humiliated. It broke my heart. I could not imagine what it would feel like to always be wet. To always smell like urine. To always be careful of where I walked, slept, sat or even stood.

I come back to my desk after seeing this woman humbly walk up the stairs, after lunch, after the celebration of a woman who no longer are wet but DRY, and I get paged to go down to the physical therapy tent where the orthopaedic patients return for physical therapy. 

And there he is. My heart break with a golden smile. He gets that gorgeous smile from his mother. He sure does! He’s beautiful.

He sees me and immediately smiles. He sees the camera and begins to smile. He knows me since day one. I’ve photographed him at screening, in the ward, deck 7, at the hospitality center, post ops, and in the physical therapy tent. His mom Charlotte is always dressed so fashionably and is always available to help her son. She loves him so much.

The physical therapist has Said walk over to me and his little somewhat straight legs are in a leg brace. He’s been given crutches in exchange for his walker, and starts to walk over towards me. I’m the goal he needs to reach and then he can have a break. He’s nine and a half and it is taking all of his strength to walk towards me. Each step is a miracle. I’m in awe of his will power to take those steps. He has been diagnosed with cerebral palsy. It’s rather advanced but he’s improved dramatically. When I first met him in February, he only knew how to crawl and I could see the calluses on his knees from the years he’s spent crawling. Now he can walk some what straight and he’s so proud of himself. He smiles non-stop.

On the inside I’m a ball of mush. It breaks my heart that he may continue to physically suffer like this for the rest of his life. A nine year old shouldn’t have to know the words palsy, leg brace, crutch, walker, creative shoe brace, or any other medical device. He should be playing soccer with all the other little boys and jumping fences. His only doctor visit should be for his annual check up.

Cerebral palsy has not slowed his mind down. He’s bright. He’s brighter than bright. He’s brilliant. At the hospitality center he was always such a help to the other patients, and was always quick to solve the solutions that would arise. If he was running for president, I would vote for him. When his pals in the ward were arguing over a toy or game, he would in a peaceful simple manner settle the disagreement. His smile charmed us all, and his character at such a young age made us all melt. He’s another walking miracle.

* This is my personal entry from my journal while photographing for a medical non-profit in Togo, West Africa 2010