Health knowledge made personal
Join this community!
› Share page:
Go
Search posts:

vincent, espoir and michael

Posted Mar 20 2010 7:17am
This will be long. I won't blame you if you don't make it through; it's going to be disjointed and messy and long, because it's another one of those days when I'm not sure where to start and not sure what to write. I know I need to write; it's all I kept thinking over the second half of the week. I just need to sit down and write this out, and then I'll be okay. I've been moving through stories that need so desperately to be told, working with families who need a voice almost as much as they need a miracle. But by the time I got back from work, exhausted after another day, I couldn't find the words. I'd sit at my computer with this New Entry screen open, and twenty minutes later I'd find myself still there, staring at the empty screen, tears running down my cheeks.

There's been no official tragedy, nothing outright that gives me the right to feel like this, and so I feel weak and small and unfit for this work. If I can't face a few sad stories after all this time, then what good am I? And maybe just one of them would have been okay. Maybe if it was just Vincent I'd be strong and clear-eyed. But it's not just Vincent. It never is. It comes in waves and every time I think I'm breaking to the surface to breathe, I'm tossed back down, tumbled in the wake of these families' pain.

And the thing I hate the most is that I'm building walls, hastily throwing bricks and mortar together around my soul because something tells me to shut off. Stop caring so much before you get yourself hurt. Here in the world of NGO's and relief work, it's called compassion fatigue. To me, it feels like going blind. Like shutting my eyes on purpose so I'm not called on to bear witness to more than my heart thinks it can handle. But their stories need to be told.


Vincent

Vincent started it all. He's still with us, alternating good days with really awful ones. We almost lost him last week when he started to bleed and there was nothing we could do. I've been in charge in the ward where hes propped up on pillows in the softest bed we have. And so the lot has fallen to me, along with the physician, to try and figure out what to do. I've asked Beninois day volunteers whether we should try to drive him home to his family. (We have an address now. Drive to the small market near Bokpe. There is a road behind it. Turn left on that road; it is the second house on the left.) As one, they shake their heads. You could find his own mother and she would look at him and say, I do not know this man. They will not take him like this; they would not want to pay for his burial. And so our last hope is to send Caleb home to Benin, to find the small road behind the market and to convince some family to come back with him.

I think that alone would have been enough for me to start shuttering my heart just a little this week. My family is one of the closest I've ever known, and so I don't understand. I don't understand how his family isn't desperately searching for him right now. I can't wrap my mind around the fact that they let him live on the streets, let him come alone in a taxi to the ship. That they have no idea that he's dying surrounded by white faces when all he wants to do is go home, and when going home is the one thing it seems we can't figure out a way to do.


Espoir

But it wasn't just Vincent. It was Espoir, too. He's four months old, a huge, uneven lump distorting his forehead. His mama and papa are HIV positive. It's hardly surprising, given that, in this country of six million, Unicef estimates that up to 150,000 were living with HIV in 2007. That's well over eight times the rate reported in the States, and probably doesn't come close to capturing the true prevalence.

Espoir's mama and papa had another child, some time ago. But this child contracted HIV at birth and died not terribly long after. Determined not to go through that again, Espoir's parents educated themselves. They learned that having a c-section birth will reduce the transmission. They learned that breastfeeding can pass it from mama to baby. And so they gathered more money than most can come by, money for a c-section and formula, and they chose a name for their new baby. Espoir. Hope.

But when their baby was born, there was something so wrong. Instead of a smooth forehead and huge, dark eyes, Espoir has a misshapen lump, the consequence of a skull gone wrong. His brain is pushing out through a hole in the front of his head, the skin stretched tightly over the fluid there. They didn't lose hope, though; they heard that a ship was coming, a ship filled with doctors who could do surgery and fix things when they go so horribly wrong.

And so they came, and we took a scan of Espoir's head, and somewhere in the process we tested him for HIV. And despite everything his parent's did, because anti-retroviral drugs are so hard to come by that the hospitals here won't let you have them until your CD4 counts drops below one hundred, little Espoir also has HIV. And we probably won't be able to do surgery because the hole is too big and his body will be too weak. And my heart broke again, shattering across old fault lines that I thought had healed.


Michael

And even that might have been okay, if Michael hadn't been sleeping in the bed across the room. Little Michael who I first met a week or so ago in the hallway near the x-ray room. He had just peed all over the floor and was happily splashing in the puddle while his mama tried to stop him through her laughter. Even then, his eye looked bad, jutting fiercely out from his head, pushed by the angry, red tumor behind it.

Michael was a twin. His daddy was murdered not too long ago, and his mama didn't have enough money to feed her babies. One of them died just about a month ago, and Michael is all she has now. But that wasn't enough; somehow, this woman hasn't suffered enough, and so baby Michael woke up screaming one night, his eye just a little swollen. The doctors said there was nothing they could do, so Michael's mama watched in horror as, over the course of the next few weeks, the tumor took over his eye socket, destroying his sight and distorting his perfect little face.

I prayed with his mama yesterday as he slept in a lappa on her back, a clean white bandage wound around his head, covering the place they took the biopsy to determine a family's fate. There were two possibilities; burkitt's lymphoma or rhabdomyosarcoma . Both are cancer, but there was no other hope; nothing grows that fast if it isn't cancer, and so we waited together to hear his fate.

I rarely cry at work. When I'm in charge, I try to keep it all together, have to be the strong one to support the nurses around me. But yesterday, when Suey came through the door with her face wreathed in smiles, I lost it. It's Burkitt's, she practically shouted. Burkitt's! Burkitt's! I saw it on the microscope!

And before you think I'm crazy for sitting down with my head in my hands and sobbing with joy because a small boy just got diagnosed with cancer, just know that Burkitt's is the only cancer that's treatable here in Togo. It's the only one that isn't an absolute death sentence, the only one that carries with it a slight chance of a future.


One small ray of light into what seems like impenetrable darkness. One tiny hope to hold on to. I've got nothing profound to say here, no life lessons learned to share with you. Just my heart, held out in trembling hands, in sore need of mending.

Post a comment
Write a comment:

Related Searches