patient stories

I mentioned a patient yesterday, a man who was willing to live his life with a tumor on his face if only he could have his hernia repaired and how we didn't think it was going to happen with time so short.

Today, I got to be the one to dance to his bedside, pen in hand, to add to his consent form. Next to excision of submandibular tumor, I printed in my neatest writing, repair of bilateral inguinal hernia.

I thought my eyes alone would betray the good news, but, like so much else here, there was a breakdown in communication. It's happened innumerable times now over the past two-and-a-half years, so often that I barely flinch anymore. It's always the same; I speak my piece, the translator relays what I think is my piece, the patient responds, and the translator comes back at me with an answer as unrelated to the question as chalk is to cheese.

Today, when I told the man that a place had opened up in the schedule, that he would be having both surgeries instead of just one, his face actually fell, his eyes downcast as he shook his head. Puzzled, I asked the translator to ask him if he was happy. The answer came swift, a word even I can understand in Mina. Ah-oh, he said. No.

Still rather confused, I asked the translator to ask him why he was so upset. The answer made perfect sense. If I hadn't just finished explaining about the second surgery. He is feeling sad because we wishes you would leave the thing on his face and take the other trouble instead. He will not be happy when he still has that one.

At this point in the conversation (and remember, this is something that happens to me literally every single day at work here), one's options are limited. You either get mad or you just laugh and repeat, using slightly different words, as many times at it takes until you get an answer to the right question.

So I explained again. A couple more times actually, until I realized that words just weren't cutting it. Thankfully, sign language is fairly universal, and one sharp motion directed towards his jaw and another at his more sensitive bits seemed to do the trick. I actually heard the English words chop it in the translation that time as both words and actions were relayed, and the patient's face broke out into a wide grin.

We shook hands on the deal and I signed my name as a witness to the new consent form.

It may have taken longer than it should have, but the message was finally clear; you will get your life back. Not only will you be able to go into public without people staring, but we will take away your hidden trouble, too. You are twenty-two years old and you will finally be able to work as fast as the other men on your farm.

Fixing a hernia might not seem like the biggest deal when we're normally dealing with things like tumors threatening airways, but for this one man, it's everything.

Sometimes, we can give everything, and it feels good.

Balkissa is back. When Sally, our speech therapist, saw her at a session recently, she found that Balkissa's tongue had split open again, making her look more like a snake than ever, since now the two halves were neatly delineated by what should have been a line of sutures. We spoke to the new surgeon, the one who's only got three more days of surgery for the outreach, and found her a place in his schedule.

She went to the OR today, but not before spending all morning hanging off my body and attempting to run loose down the hall. It appears that she has not lost her spirit, and her little voice rang out loud, if somewhat garbled, after we prayed at handover. Hallelujah! Amen, and her little hands swished underneath her headscarf as she twirled in a circle and came to rest against my chest.

Amen, she said again, quieter this time, and I echoed her.

Yes, God, let it be so. Let this child come to know You in all your Love and all your Beauty. Let her see herself as a reflection of You, no matter what happens in this second surgery, the last we'll be able to provide, successful or not.

And as we sat in our leadership meeting at ten in the morning, I flipped over my schedule to see that the back was empty. We had just assigned the last beds to the last patients we'll treat during this outreach, and my heart caught in my throat as I saw their faces in my mind. The man with a keloid scar hanging down below his shoulder. The woman recovering from yet another VVF surgery, her baby climbing all over her, a testament to her hope. The man with a tumor on his jaw that we're planning to remove and the hernia we might not be able to fix. Please, he begged. Leave the thing on my jaw. It does not look good, but it is okay. Please fix my hernia, because I work on a farm. I work slower than the others. Please.

And little Balkissa, recovering in her corner of B Ward tonight, wrapped in her blankets and the love of the nurses watching over her.

There are only three days left. I pray that we would use them wisely, that we would be faithful, that we would not grow weary.

Amen.

I forget that this is usually just after the halfway point in an outreach, that there are normally still four months still to work. We've gotten ourselves so fully immersed into the beginning of pack-up that I'm losing sight of the fact that there are still patients in the wards and lots more coming and going from our outpatient clinic.

Today, I was sitting in the nearly-empty C Ward making a spreadsheet for everyone in the hospital to input the weight of every single thing that isn't bolted to the ceilings before we head off around the Cape. I'm not actually kidding about this; every monitor, mattress and mirror has to be weighed and charted. (Don't even get me started on the bed frames. It's awfully tricky to stand on a bathroom scale while holding one of those and still be able to see the numbers.) I heard a little chirp outside my door and looked over to see the jug-handle ears and huge smile of one of my favourite little boys from this outreach, Godwing.

He's six, and when he came to us, scar tissue on the back of his leg held his knee at a right angle. He would hop around the wards on miniature crutches like a little bird until the day we were finally able to do his surgery. Afterwards, his healing took a long time. He required a skin graft to cover the area where the scar was released, and he's been coming back to the outpatient clinic every few days to have his bandages changed, his leg now sticking straight out in his custom-made splint.

Today, when I looked up, Godwing wiggled his eyebrows and beckoned me over. Va, mi jo, he told me. Come on, let's go. I got up and peeked around the door to see his leg covered with just a little bandage instead of the big, bulky splint he was used to wearing. I threw him a questioning look, and he started to giggle as he showed me how he can bend and straighten his leg now.

I thought that was it; I thought he just wanted to show me that the leg that used to be frozen by scar tissue could now bend like a normal little boy's leg, but it turned out Godwing had saved the best surprise for last. With one last look and a kiss on my cheek, he took off down the hall. No crutches. No support. Walking proud and tall (as tall as you get at six years old) down the middle of the corridor, slowly but surely making his way towards the stairs that would take him home.

I forget that this is the time in the outreach that the patients are learning to walk. We've seen them come and go from the wards, but the outpatient nurses and physiotherapists have continued on, bandanging wounds and stretching muscles, and this is what it all means.

And Godwing wasn't the only one. Over the last two days I've seen so many of them. Little Ali, who was burned with boiling porridge when he was a baby, has finally taken the first steps on his own, on an foot that can now rest flat on the floor. Tossedi is using little sticks to help him, but his crooked legs are straight, free from their casts, and supporting his weight.

All around the hospital, little boys are learning to walk. With my head full of packing up, my heart is full of this.

Every single day, broken babies are born into this world. Here in Togo, no one knows how many. Often, no one marks their coming but their mamas and the village chief, the one who hands down the proclamation that this baby is cursed, that he cannot stay in the village or the sickness will spread. And so many babies are abandoned, left to die because they were born with a cleft lip or clubbed feet or crossed eyes. In the West, we can't comprehend this. We've gotten to the point where people with special needs are being referred to as "differently abled," and this is a good thing. It reminds us that they are human, that their lives are worth just as much as ours.

Here in West Africa, things are often so different.

Which is why, I think, I'm so giddy when we take care of the littlest ones. When their mamas love them enough to scrape together the money for transport to Lomé, to wait in long lines at screenings in the blistering sun, to endure days and weeks on board the ship while their babies get better. I love knowing that they will never have to know that other life, the one filled with ridicule and shame. The one where they can't make friends, can't go to school, can't find love and get married.

And most of all, I love knowing that they'll know any life at all. Because for Kossi, life wasn't a guarantee.

He was born five days before we met him, in a hospital way up north. Doctor Russ works there, a man well known to Mercy Ships, and when he saw the growth on Kossi's tongue, how the brand new baby couldn't suck and couldn't get milk, he e-mailed us right away. The surgeon's schedule was already full, but everyone involved knew that we had to at least see Kossi; saying no meant that he would starve to death, sharing a fate with so many other of these cast-aside babies.

When he arrived, our littlest man couldn't close his mouth over his tongue. It's a good thing newborns have to breathe through their noses, because there wasn't enough room in his mouth for much other than that growth. We didn't know exactly what we were dealing with, so we decided to do a CT scan of his head and neck to make sure it wasn't a tumor that extended any further. Since he was so small, making sure he stayed still was easy; I swaddled him tightly in a receiving blanket (the only one I could find in the entire hospital) and started a pump that delivered milk through the tube we'd placed in his nose, right to his stomach.

It worked like a charm and Kossi slept through the entire thing, his whole body fitting into the part of the CT bed meant just for the patient's head. The next day, Kossi had surgery and returned to the wards where his mama and papa were waiting. Instead of the mass on his tongue, there were just a few sutures. Instead of a death sentence, life spread out in front of him.

Kossi's still struggling to learn how to breastfeed, and since his family lives so far out of town in a village where formula isn't really available, (even if they had the money to buy it) we need to make sure he's a champ at it before we can send him home. Which means that we get to keep him for a few more days, bundled up in his blankets in his little corner of B Ward where his mama watches over him.

And every time I catch her eye, she looks up at me, the scars on her cheeks lifting with her smiles, and she moves aside the blanket so I can see his little face.

Because she knows I love him, almost as much as she does.

Some days I hate Africa.

I hate that I live in a place where twenty-five year-old guys can be perfectly healthy in May only to show up in July at a clinic with sunglasses hiding an angry, red tumor where there was once an eye. A place where the best diagnostic tool in reach sometimes is the fact that, if I can't walk more than ten minutes without getting dizzy, there must be something wrong. I hate that money and the lack of it determines that some people can't be seen by a physician when symptoms first start, before the side of their faces swell until the skin breaks.

And, in some ways, being on the ship makes it worse. Because that twenty-five year-old man might barely make it up the gangway before needing to sit down, and we might have access to the lab tests that explain this by counting his hemoglobin at a shockingly low 5.3. Access to monitoring equipment that traces his heart racing far faster than it should. Access to a CT scan that shows the tumor snaking its way through his jaw and nose and the place where his eye should still be, if only he lived in a country where he could have seen a doctor when the swelling in his mouth first started. Sometimes I hate knowing the truth.

Two months ago, Koudjo was healthy. He was twenty-five with his whole life in front of him. Yes, the tumor grew fast; he knew that, but he still thought we'd have the answers, that we'd be able to do a simple surgery or give him some antibiotics and he'd go home healed. He had no idea that coming to our dental clinic today was going to change all that. He thought it was a problem from where someone had pulled his tooth a few months ago somewhere in Benin. He thought we'd help. He thought it would be okay.

He was wrong.
I hate that he was wrong.

And the thing that's probably going to keep me awake into the dark hours of the night tonight is that I don't know whether he would have even had a chance in the first world. I'll never know, because we have no way of finding out just what it is that's probably going to kill him. Soon. And what little help we have to offer by way of palliative care is going to be taken away in a month when the ship sails away from this port.

And it's just not enough.

I stood in front of all the nurses at handover, and I said that I love seeing the pain and the joy balanced, and I hoped all the time that they wouldn't see in my eyes that I was about to cry, that I couldn't really see the joy today.

I feel so small, so useless when faced with a world that is broken like this. I tell myself that God is working to redeem it in His own time, but my heart wants it to happen now. While Kuodjo is still alive, while he still has a chance. I want him to get married and have kids and be an old grampa with white, fuzzy hair and a wooden cane, sitting on a bench outside his house.

It was hard to imagine a world being redeemed when I looked at Kuodjo today.

There is nothing better than belly laughs from a chubby nine-month old baby, his whole face crinkling with the force of his smiles despite the IV in his head and boards keeping both his elbows stiff so he can't pull out that IV, his mouth wide open in a toothless, gummy grin every time you come near.

Nothing better than a little toddler, the stumps of his burned fingers covered in a bandage turning brown from too much play, who shrieks with excitement when he sees you across the room, pushing adults out of his way as he runs over, turns around and drops into your lap as you sit in the floor to welcome him.

Nothing better than a seven-year old girl, a paper crown on her head declaring her allegiance to the Netherlands in the World Cup final, who leans into your side and looks up into your eyes to show you that the swelling in her tongue is almost small enough that she can close her mouth for the first time in years. That's she's not scared anymore, her arms wound tight around your neck to prove it.

And when all three of those things happen within three minutes of each other?

I hope you'll forgive me for missing the first half of the game. I didn't want to cry in front of everyone, even if they are tears of pure joy.

Balkissa is seven. She came to us swathed in a dark headscarf, tears running down her cheeks every time one of us so much as looked at her. I have rarely met a child so scared, and I can only imagine the kind of life she's experienced that's made her this way.

I might have stared, too, if I had met her before my time here. Before long familiarity with extremes in pathology bred this comfort I feel around the ones cast aside.

We don't really know what caused her problem, her history vague like so many others in West Africa, but she came to us with a tongue too big for her mouth, split down the middle like a snake's. Her lower lip protruded under its weight and she was unable to close her mouth.

On the morning of surgery, her doctor, Dr. Leo, said something so poignant. In the Western world, little children use their tongues to lick ice cream. I hope, when this is all finished, that Balkissa will be able to experience that part of life, too.

But it seemed that enjoying ice cream wasn't in Balkissa's future, at least not any time soon. She returned to us from the OR much as she left; shy and fearful, sleeping in her corner bed with her blankets pulled over her head to shield her from the world.

It's been days since her surgery, days in which we counted ourselves lucky if an interaction with Balkissa didn't result in those huge, silent tears. Days where the closest we'd get to playing was a little seven year-old girl, sitting on a chair, holding a rag in front of her mouth to catch the drool the still flowed freely. Honestly, it's been a little discouraging.

But in one moment this morning, everything changed.

Balkissa's mama was sitting on a stool next to another patient's bed, little Ali. Apart from sharing the best name ever, Ali is one of the cutest kids around. He's also a boy, a fact that has the translators hooting with laughter when I try to claim the same, very Muslim, very masculine name. Balkissa and Ali's mamas have bonded, and we often find them in one corner or another, chattering away in the fluid tones of their language.

As the mamas talked, I looked over to catch Ali's eye and make him laugh with a silly face (not hard to do, now that he's over his initial yovophobia). When he started shrieking, Balkissa's mama turned to look at me, and that small movement was enough to upend her stool. She crumpled to the ground in an undignified heap, and without thinking, Balkissa broke out laughing.

I hadn't ever seen her smile, and here she was, cracking up at the sight of her mama in a pile on the floor. When she saw us laughing along with her, breathless in our own joy, something seemed to click in Balkissa's little head. Somehow, we stopped being the enemy, the people who were going to make fun of her, the people who were going to hurt her. With one swift fall from a chair, we became conspirators, sharing a secret that finally made having fun okay.

We stood in our customary circle to pray at the end of day shift, raising our thanks to God for sparing the life of a woman whose nearly-forty pound tumour had just been successfully removed, and Balkissa ran over to join us, no trace of her former fear anywhere to be found in her racing steps. Absolutely confident in her place among us, she leaned up against a nurse's legs, squeezing her eyes shut tight and then peering between cracked lids to see whether I was watching, her face breaking into a perfect smile when she realized that I was, every single time.

This is my favourite thing about this place. Watching them finally realize that we're in this together, that there's nothing about them that will make us love them less. That they can have massive tumours or snake-like tongues and no one will stare. No one will mock.

Because we're in this together. You, me, Balkissa, all of them, each one who finds shelter with us. We are all image-bearers of a beautiful God, a God I saw so clearly today in Balkissa's bright eyes and ready smile.

It felt so comfortable this morning, coming in to work in B Ward, greeting Samson in familiar Fon, a language that still seems to slip from my tongue more easily than Ewe, despite my almost-five months here in Togo. My curious, A fon gangi a, was met by a smiling een, (Have you woken up well? Yes!) and the day was off to a good start.

The morning was filled with waiting for Samson. He snuggled under his covers, just his characteristically scarred cheeks visible above the blanket, finding it no doubt freezing on the ward compared to the tropical weather outside. In the hall, hopeful patients shuffled from one room to the next as they waited their turn to be seen by the surgeon here to screen them.

Today was one of answered prayer. We had scheduled more than seventy patients to come and be screened, but the surgeon who was supposed to be here became very ill at the last minute and was unable to travel. When it seemed that we would have to cancel this block of surgery and crush the hopes of almost a hundred people, Dr. Frank, a visiting surgeon who's been here learning how to do VVF surgery, reminded us that he's a general surgeon and would like to stay for the four weeks that were planned. All morning he examined one patient after another, and the blank pages of the schedule book were slowly filled.

I met them in the stairs as I went to my room to get my mug for some tea. They marched down, all in a line, and then, much later, planting both feet firmly on each stair, a little old Grandma in a navy blue dress printed with wild, orange flowers. When she finally reached the bottom she turned to me with a smile like a sunrise and performed a little dance for me, right there on the landing, before shuffling off to join the rest of her parade in the waiting room.

When I passed back their way, I opened the door to see them all sitting on chairs, shoulder to shoulder, eyes turned down. Waiting. Hoping. Praying.

How are you all, I called out in Ewe (a language I can't even begin to spell out in English characters), and as one, faces were turned towards me, smiles blooming all around the room as they answered together. Yes! We are fine! And then they went back to their waiting, the smiles erased before I even had time to close the door.

Oh, but there were prayers answered all over that hospital today. Each name, each diagnosis neatly printed in that book was a ticket back from the darkness, a glimmer of light in a world that had seemed so dark.

Akossiwa. Thyroidectomy
Christophe. Right inguinal hernia repair.
Salome. Excision of lipoma, left shoulder.

And in his bed in B Ward, Samson is resting quietly. The little pieces of bone placed over the metal plate in his jaw will knit together over the coming months, and he will grow strong again. His prayers, too, have been answered in the clean, white bandages covering his cheek and hip.

He is one of the hopeful ones.

My heart sank when Caleb, a translator, stopped me on the stairs and handed me a well-worn packet of papers. The first was a discharge form, neatly printed with information about the surgery we did last year. I lifted it to see the scrawled report, detailing just how Dr. Gary had sliced into the right side of his jaw and lifted out the grapefruit-sized tumor growing there. How much blood he had lost. How many screws it took to fasten the metal plate that would serve as a jaw. And down at the bottom, I read the words I was dreading. Will need ICBG sometime after three months.

ICBG stands for iliac crest bone graft, basically a fancy medicalese way of saying that we can't just leave a metal plate sitting in someone's face. That eventually the body will reject that foreign object, pushing the metal out through the skin. So, instead of leaving patients to that fate, we come back once they've healed from the first surgery and take chips of bone from one of their hips, the iliac crest. We re-open the jaw and place those chips all along the metal plate, and after a few months, the body grows fresh bone from those little pieces and everything is all right again.

The problem with all of this is that Samson, the man looking at me with hope spilling from his eyes, was carrying a card with tomorrow's date on it. And there are no surgeons here who can do that sort of a surgery tomorrow. There should have been one, but he wasn't able to stay for as long as he thought he would and so Samson, as far as I knew, was going to have to go back to Benin and hope that the thin layer of skin covering his plate would be enough to hold until we pass this way again. Only I knew it wasn't; I could feel the ridges in the metal when I ran my fingers across his jaw, and I prayed there was something we could do.

I left him sitting under the tent in the warm, evening air and ran back up the gangway and down the two flights of stairs to the hospital, carrying Samson's hope in my hands, dreading the thought of going back outside to tell him no.

I didn't have to.

It turns out that the maxillo-facial surgeon coming this weekend is also one who can perform ICBGs. I flipped through the big book in the OR office where all the surgeries are scheduled, and found Samson's name almost immediately. It was the first one on Monday morning's list: Samson. Thirty-five years old. ICBG. A second chance.

When I reached the top of the gangway again, I waved my arms to catch the attention of the little group huddled on the bench, Samson, his wife and Caleb, the translator. They looked up at me, expectant, and I grinned and threw both my thumbs triumphantly in the air.

They didn't hesitate for a second. Just got up and started moving towards the ship, quickly, like I might change my mind if they walked too slowly. We paused at the top of the stairs to check them in and I led the little procession through the hall to B Ward. Samson's smile was wide as he looked at the familiar hospital where last year his healing had begun.

On Monday, our hope is that that healing will be completed.