patient stories

Richard and Nicholas have got to be two of the oldest souls I have ever met. Maybe it's the amount of time they've spent in hospitals. Richard (who prefers to go by Richie) has spent a quarter of his life as a patient at the Island Pediatric Hospital here in Monrovia; he's four going on four hundred. Nicholas is the younger of my charges; he's only three, and all his memories involve doctors and tests and medicines and pain.

They both drank caustic liquids over a year ago, and they're two of the worst cases Dr. Jose is working on here in Liberia. They're the reason that I'm sleepwalking right now, almost through my second night after days with no rest. But nine months on board makes me the pediatric ICU nurse with the most experience, so I'm the woman for the job.

It's incredible how fast these nights are passing. Between Nicholas' squeaky breathing and Richie trying his utmost to fall out of bed (despite the fortress of siderails and pillows that I've built for him), they've kept me busier than I can remember being all year. If they weren't both so cute, I might almost be annoyed.

But like I said, they're old souls, and it's enough to amuse me to the point where Richie's constant thrashings and coughings and tuggings aren't quite so frustrating. I've never been able to reason with three and four-year olds before, but Nicholas and Richie (in their more lucid moments) seem to have a perfect grasp of abstract concepts like waiting for their medicine and listening to the nurse when she tells you to stop scratching your skin raw. They look up at me with liquid black eyes as I bend over their beds to rub their backs and straighten IV lines and untangle them from their tubes and wires. The solemnly nod their little heads when I ask them if they're feeling pain. If they want to have medicine. If they want to sleep.

Richie is finally at peace. He and his mama are sleeping top-to-tail in his bed. His limbs are splayed out wildly, except for one little hand, holding tight to hers. Nicholas is draped across his mama, nestled in the crook of her hip, his little teddy bear clutched firmly in his arms.

It's only a matter of time before they both start up again, Richie with his incoherent cries and Nicholas with his coughing. But for now, I'll revel in the quiet.

It seems that a lot of my favourite moments on the wards involve little naked kids running around. Yesterday was no exception.

The wards are full of kids right now. We have a new doctor, Dr. Jose, a pediatric surgeon who mainly operates on babies who were born with gastrointestinal malformations and kids who drank caustic liquids. This latter bunch are a sad lot. They usually go wandering to a neighbor's house and see a cup sitting on the ground. Not knowing that it contains lye, a horribly corrosive liquid used for making soap, they pick it up and take a drink. The result is an internal 'burn,' all the way down to the stomach. When the wounds heal, they're left with scar tissue and tightening of the esophagus. These kids often become malnourished and require feeding tubes because there simply isn't enough space in their now-tiny esophaguses for food to pass.

Mark is one of these cases. He's two-and-a-half and he's been in a few times in the past weeks for a procedure where Dr. Jose uses a thick tube to stretch out his esophagus. He's not a big fan of us, but he's comforted by the fact that he's got friends here, other babies and their mamas who have all been doing the round of local hospitals, trying to find treatment that will prevent their children from starving to death.

Yesterday, close to the end of my shift, Mark was running around the ward, stark naked. Before you call me a bad nurse for letting my children hang out like that (pun most definitely intended) you have to know a little background. We're on a water restriction on the ship right now. The water we use for drinking, bathing, flushing toilets and everything else is supplied from a hydro plant here in Liberia. Recently, the supply has dropped drastically, and so we get announcements at community meeting reminding us that we really can't use more than two minutes in the shower and the tap needs to be shut off when we brush our teeth. We've had low reserves before, and it always resolved within a few days. This time it's different. As of Monday, we had about six days worth of water left on the ship. We're in crisis mode. No one is allowed to do laundry. We're using disposable plates and cups at meals so we don't have to run the dishwashers. It's been suggested that daily showers aren't a necessity. We have no idea what we'll do if the situation doesn't improve.

However drastic this might sound, it did provide the basis for my incredible amusement. Mark had been drinking a cup of water. He's not really the best at drinking anything, and the majority of the precious liquid ended up poured down the front of him. When his mama went to the cart to get a new gown, I gently reminded her that we have no water to do laundry and so he needed to keep that gown. He, however, didn't feel like wearing a sopping wet garment, and so we took it off him and draped it over the end of the bed to dry.

Which is why, as his little friend from the next bed packed up to leave, Mark was running around in nothing but his birthday suit, absolutely content. It was only when his own mama left the ward to say farewell to her friend that Mark realized the truth; not only was his little friend, Momo, leaving, but his mama was disappearing for a while too.

He bolted through the half-open door and took off down the hallway with me in hot pursuit. What followed was enough to make me laugh for days. As his mama and his friend disappeared through the door to the aft gangway, he started yelling and stomping around, NG tube and all his little dangly bits ... well ... dangling. Mama-o! Mama-o! Mama-o! I was trying to hold in my giggles while trying, unsuccessfully, to herd him back into A Ward. He, in turn, was trying, also unsuccessfully, to fend me off with small, flailing arms.

It turns out that it's nearly impossible to reason with a distraught, naked two-year old. I varied my tactics as he ran in circles and we both got out of breath. Hey man, come inside. I will get you gown. You can't be naked in the hall. Don't beat me, man! You're alright. Mama will come back. You're alright. Come inside. You can't be naked. Don't beat me. You beat me, I will beat you. (As an aside, I would never beat a kid. But people were staring, I was desperate, and it's a threat the mamas tell me to use that, while never carried out, generally has enough weight to ensure compliance.)

Eventually he ran out of steam. I knelt next to him in the hallway as he dropped his tired head onto my shoulder. With one last half-hearted call for his mama, he gave up the fight. I carried him inside, found some PJ bottoms for him to wear until his gown dried and climbed into his bed. He nestled into me, head on my chest and little arms wrapped tight around me, and fell asleep.

I think I won that battle, but it's hard to tell. Maybe it wasn't one I should have picked to begin with.

You just can't be naked in the hall. That's all.

This place is such an odd kaleidescope of conflicting emotions. Twist the glass one way and your sides hurt from laughing. Turn to face the light and your heart is shattered. Today was a day of both.

Dawayne is eight. He's in third grade. (Do the math and you'll realize that he's in the right year for his age. It's the first time I've seen it since coming here.) He's a bright kid, and I'm not just talking about the lightness of his skin; he read me the story of Jonah this morning, only stumbling over words like Ninevah and repentance. He's really not too sick; as I was leaving work he was being called to the operating room to have his hernia repaired.

This morning, Dawayne provided me with two of the funnier moments I can remember. I went over to him, needles in hand, and explained to him that I needed to juke him small for an IV. That I would make sure I got it on the first try. And that, if he held still, I would give him not just one, but seven whole stickers. His eyes lit up and he stuck out his hand, brimming with confidence. His bravado failed him, however, as I approached his skin with the needle. His eyes rolled heavenwards in supplication as he screamed out in utter seriousness, JESUS, take me now! I had to stop and compose myself before starting that IV.

A little while later, the mamas in his corner called me over. They prophesied over me that, once I get back to the States, the first thing I will do is born a baby. While my ovaries don't mind the thought of that, I explained that I had to get a husband first. One mama laughingly offered her three-year old son. I told her he was too small and that I needed a big man. At which point little Dawayne rolled over, looked up at me, and with raised eyebrows and a sassy little head tilt delivered a perfect impression of Joey Tribiani. How you doin'? I almost peed myself.

And the kaleidescope shifts and Eddie fills my view and laughter is the last thing on my mind.

Eddie is four months old. From the neck down, he's like any other baby. He's the firstborn in his family, a little porker with chubby thighs and a miniature pot belly. Eddie is cherished. When he was born in the middle of the rainy season, his mama made sure to always cover him with a mosquito net when he slept, to make sure he didn't get malaria. About two months ago, an aunty was doing something by candlelight as the baby slept, secure under his net. She placed the candle on the ground, and in just a few seconds, little Eddie's life went up in flames. The net caught fire around him, and his face and head were horribly burned.

I hold Eddie and rock him and kiss the angry pink skin on his cheeks. I tell him he's beautiful. To anyone other than us, though, he's hideous. He doesn't look like a baby anymore. His eyes can barely open and close. His lips are a static mass of scar tissue. His nose is gone, leaving only two small holes in the centre of his face. The top of his head is an open sore. Everything else about him is the way it should be. His skin is creamy brown, his fingers delicate and perfect. It's just his face, the first thing everyone will see for the rest of his life. It's just his face that's been destroyed.

His mama loves him. She holds him and rocks him and dresses him in little outfits that we've scrounged from the bottom of donation boxes. She can't bear to be there when we change his bandage, so we take him to another room. He wails as we soak the infected sores on his head with vinegar, shaking from side to side, trying to make it stop. And then he quiets, submits, gives up, and that's maybe worse than all his screams.

I'm afraid for little Eddie. I'm afraid of what his life is going to be. He will never know what it means to be normal. He will live forever with people staring at him. People hating him. People ignoring him or making fun of him or calling him ugly. We sit here and we tell him he's beautiful (and he is, really; you just have to ignore the obvious), but he's not going to hear that very often when he leaves here.

Which made it all the more poignant when I heard his mama singing. I looked over to their bed in the corner to see her lying down, Eddie propped up on her stomach. From behind, all I could see was the plumpness of his diapered bottom, encased in a clean, white onesie, and the fresh whiteness of the bandage around his head. She bounced him up and down as she sang quietly.

I am on the Lord's side.
I will never give up.
I am an overcomer,
For the Lord God is on my side.

I pray that Eddie would be an overcomer. That he would somehow have the chance to grow up and go to school to learn to read like Dawayne. That he would be surrounded by people who can see past the scars.

That he would know love.

We've said no so many times that yes has come to feel almost foreign on my tongue. Finally, though, we've been given the chance.

Kwelywoh is back. I saw his name on the admissions list yesterday, and ran down to D Ward to find him curled up in bed 15, looking a little surprised to be on the ship again. I knelt down next to him, and a little arm snaked out from under the covers to curl itself around my neck. The lump between his eyes pressed into my temple as he hugged me silently.

He had surgery today. In another marathon operation (the second in as many days for Dr. Gary) his skull, too, was carefully dismantled. His brain was gently returned to its proper place, and his head was meticulously reassembled.

An encephalocele repair is a surgery so specialized that I've never even seen one in the States. We've done four this year, and there's another waiting to get over his malaria on B Ward. It's incredible to me to think that we're able to do operations like this in a war-torn country with no infrastructure, no electricity and no running water.

Someone on the ship here today laughed at me when I told him I wanted to live out in Liberia proper, out there amidst all the squalor and dirt. I do, though. Someday, eventually, when this season is over, I can't wait to get out of this plush life. But as much as my heart is on land with the people of Africa, I'm coming to realize more and more just how much we're able to do in this floating city.

It feels good to be able to say yes.

Remember Yeme? I figure it's time for an update.

She's had more surgery, and the tumor above her eye is gone, the scar already fading quietly into her skin, barely noticeable between her plaits. She's blossomed in the almost-three months she's been on the ward. The walls in her corner of B Ward are covered with drawings and crafts and language charts, spelled out phonetically so we can communicate with her in her own language. (She just laughs when we try, but we're all getting a kick out of it, so no one really minds.) She's learning English, too, picking up one word at a time by mimicking our voices with uncanny accuracy.

It's almost time for her to go home. In the eighty or so days she's been with us, we have had no communication with her family. They haven't tried to call or write or use any other means to find out how she's doing. It's like they don't care, which could be closer to the truth than I want to think.

But she doesn't need us anymore. We've loved on her as much as we can, and her wounds have all healed. As hard as it is for us, the truth is that as soon as we can get her a flight, she'll be winging her way back to Guinea. Back to her village. Back to the people who abandoned her at our gates.

Hopefully, back to love.

We have something here on the ship called the Adopt-A-Patient Program. For those who work on the ship but don't have anything to do with the hospital, it provides them with an opportunity to come to the wards and spend time with our lovely patients. Crew members sign up and get the name of someone having surgery. They visit that person as often as they'd like while they're stuck in the windowless tin box we call our hospital. Some crew members visit once, some end up coming every day for weeks on end. Dorothy is one of the latter.

She's a teacher at the Academy, our on board school for children of the families who live and work here. When she picked up the slip of paper with Mickey's name on it, she had no way of knowing that Mickey would end up being one of our long-term patients. (Forty-nine days at last count.) He's a little man who had plastic surgery to release burn scars on his hand. The first time his bandage was changed, everything looked so good we considered sending him home. The next time we changed it, we were afraid he would lose a digit; infection had spread and threatened the skin grafts between his fingers.

Mickey started out shy. He was tiny, with little stick-thin arms and legs and he screamed every time a white person came near him. Dorothy never seemed to mind. She doggedly visited him, day after day, until finally her persistence paid off. I was working the other day when she called. Is it okay if I come see Mickey boy now? Or course it was okay. It's always okay for someone to come to the wards and tire out the children who seem to be feeding off an energy source I'm sure the US government would love to tap into.

When Dorothy's face showed around the door, Mickey gave a shriek of glee and toddled at top speed across the ward to fling himself into her arms. He's not shy anymore. In fact, he pretty much runs the place, getting pulled around the halls, perched like a sultan atop a pillow in a laundry basket, by willing servants.

One of the other nurses working that night noticed that Dorothy was wearing her white Mercy Ships shirt. In fact, Dorothy wears that shirt every single time she comes to visit Mickey. The nurse, curious as to why her apparel was so limited, asked her about it. Dorothy's simple answer stunned me.

I figure the Liberians don't have a lot of different clothes. And you nurses always wear the same uniforms. It doesn't seem right for me to come down here and flaunt my wardrobe. So I just put on this shirt.

That's the closest thing to Christ I've heard in a while.

I'm trying to resign myself to the fact that I'll never be able to properly explain this place to anyone who's never experienced it.

I was working on B Ward yesterday evening. There aren't so many babies anymore, but those who are there have been there for what feels like forever. Something like a month and a half. They think they run the place, and the noise level was significantly intense for most of the shift.

During a quiet moment close to the end of the evening, an anesthetist came in to speak to one of the patients about her operation in the morning. This particular lady speaks no English and, as it turns out, was holding a small grudge against us for jabbing her with needles to start her IV. Thankfully, my patient in the next bed, a sweet, smiling woman about my age whose face and arms and torso are covered in tumors, could communicate with the surly Oma. The only one she couldn't understand was the anesthetist.

So I stood at the foot of her mattress as the doctor sat on the end of his patient's bed. He asked a question, which I relayed in Liberian to my patient, who then asked her neighbor in their tribal language, Mano. The answer would return through the same channels. The interview took a surprisingly short amount of time, given the convoluted methods we were using. When prompted at the end, the old lady had only one question, and it wasn't for the anesthetist.

She scowled at me as my giggling interpreter/patient translated. She want to know why you people juke her (stick her with needles). She say that thing on her hand is not good. I scowled back at the Oma until we both started laughing and explained through my trusty translator that the thing on her hand was good and that if she took it out, I would come juke her again, any time of the day or night.

At which point she mumbled something and disappeared under her covers. My patient turned to me, grinning broadly, happy to be providing clarification. She said 'good night'. And she will keep the thing on the hand.


It must take incredible courage to come into this ship for surgery. To be surrounded by white people who don't speak your language and who do things to you that make no sense, whether you like it or not. My friend, Amy, took another patient for a dressing change yesterday. When they came back, he was proud to share the new knowledge she had just imparted to him while juggling the gauze and tape.

I learn about my heart. And I learn about my lunges. And I learn ... Here his memory got fuzzy, until prompted by a laughing Amy. You should only have one wife. Two women is too many problems.

When he says he learned about his heart or his lunges (lungs), he's not talking about cellular physiology. Today, Jacob learned that he has something called a heart that pumps his blood and two things called lungs that help him breathe. He didn't even know. Most of them don't.

And yet they gather together their pain and their fear and they walk up the gangway anyway, lured by the promise that maybe, just maybe, they'll get to leave whole again. How can I go back to North America and explain what it feels like to look into a patient's eyes and see that? How can I share my experiences here in a way that will make sense to the people closest to me? How can I make them understand what I've been doing when my own life sometimes feels so foreign to me?

I think I'm going to need a translator.

Musa has been on D Ward for about a week now. He's a quiet man. He spends most of his time in bed, occasionally chatting with neighbors or paying half-hearted attention to the movies we play on the TVs twice a day. He always takes the opportunity in the afternoons to go outside for some fresh air. With patients in the ICU and old ladies absconding in the night, there's enough going on around him that he manages to fade, becoming a part of the background of the ward rather one of its stars.

As I sat at the desk a couple evenings ago (not yesterday; yesterday I was too busy trying to keep the door locked and herding my lady back into her bed and cleaning up vomit and consoling yet another crying baby to pay much attention to the background), I had a quiet moment to watch Musa. He was in his bed, as usual. In front of his face, he held the mirror we give to all of our patients who have wounds they will need to care for at home.

As I watched him for what seemed like forever, he gazed at his reflection in the tiny glass. Every few seconds he would reach up with his other hand to gently touch his lip. He practiced smiling. He practiced pursing his lips, his kisses made slightly unweildy by the bandage under his nose. Mostly, though, he just looked. He couldn't take his eyes off himself.

I sat there at the desk amidst the cacophony of crying babies and laughing mamas, and I watched Musa watch himself. My roommate, who was sitting there with me, noticed my fascination. She looked too, and her eyes grew soft. How old is he? I checked my list, and my heart caught in my chest. Forty-five.

Forty-five. He's lived almost half a century with his face split wide open, shunned and ridiculed from all sides. He's avoided contact with strangers, people who would turn away from his face in horror. He's never known what it means to be normal. And now he's whole, and he can't stop looking.

I can't blame him.


addendum: This is Musa the next day, after the bandage came off his lip. He's still staring, and I still love it.