A Man in Many Pieces

Tim stares at the computer, cold coffee at his elbow, lost in the problem he is trying to solve. A minute later, his eyes widen, and his hands begin to fly over the keyboard. He sees it now, and the solution in his mind begins to take shape on the screen. It’s not just any problem he is trying to solve. A soldier’s life depends on it.

Tim knows something about fighting. For twenty years, he has been at war; the enemy tearing at him day after day, breaking his body, attacking his spirit. The battle dominated his childhood, dragged him from home and school, forced him to decide if survival was even worth the cost.

And now – fittingly or ironically, it is hard to say – Tim is an engineer, designing survivability systems to protect soldiers.

He is almost literally a man of steel. Every major bone in his body has been crushed at one time or another and, where we have marrow, Tim has metal rods. But this is a small fact compared to the smile on his face. A smile. He has endured more misery than I can conceive and deals with the repercussions of his injuries every day, but he smiles and goes to work, engineering solutions to prevent other people’s pain.

Deb Bosch is a nurse, which both reduced and increased the trauma of learning that her new baby had brittle bone disease. She understood how the disease worked, but also foresaw what it would mean for Tim and the rest of their family. There is no cure for this disease and there was no way for her to protect her child from injury without starving his desire to live. It has been a hard twenty years. There are only 206 bones in the human body, yet her son’s bones have been broken about 500 times – by falls and car accidents, by doctors and seat belts and even by pajamas. Five hundred times, her heart has been broken to see his pain. Over and over again, they break and heal together.

Tim is one of ten people in the world – anywhere, ever – to be diagnosed with his version of the disease. For years, Wings of Mercy flew his family to a research and treatment specialist in Montreal. When he was a baby, Deb carried him on a pillow because a seat belt would break him. When he was bigger, Tim flew on a stretcher.

When he was old enough for school, a new problem appeared. The treatments and surgeries to strengthen and repair his many broken bones continued and Tim was often unable to attend class, but he studied with Deb and passed every grade, all the way through high school. In college, Tim suffered an especially bad break just before exam week in his Senior year. The school offered a delay, but Tim declined. He showed up like everyone else, except for his new cast, and passed the tests.

Tim’s life of trouble has produced a curious side-effect. He is familiar with pain and does not surrender to it. Like a soldier trapped behind enemy lines, he observes it and devises strategies to defeat it. He smiles and tells me that he loves his job as an engineer – that he’s “living the dream” – and somehow, in spite of all the misery he’s endured, I believe him. He strikes me as a man of steel in a brittle body; maybe even a man of steel because of a brittle body.

Last year, he helped invent a device to make wheelchairs safer and easier to operate. Tomorrow, he will stare at his computer screen and try to solve a new problem. And someday soon, a soldier will come home in one piece because of a man who has been broken into many pieces.

——

For you created my inmost being; you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made; your works are wonderful; I know that full well.

My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth.

Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.

– Psalm 139

Camille, After the Storm

Winter has come early to Michigan. Camille looks through the window and watches the snow fall, tries to think about Christmas, but the feeling in her stomach is not comfort and joy. For her, winter has always been a dangerous time. She is stronger now, but her body remembers the risk, still feels the dread.

Her body remembers many things that are no longer true. Starving for air. Being stuck in a hospital room on beautiful summer mornings. Stuck in a chair, watching her friends run and dance.

The problem had been her lungs, which shrank and withered even as her young body grew. Her heart was working itself to death, trying to compensate. Camille pushed on with a smile, but there was no healing for this, no way for her body to continue, and this is the dread she remembers.

But then the miracle they had prayed for, a new heart and lungs. For twenty months now, Camille has been exploring a world she had watched from outside. She can safely touch a flower, touch the earth, lay in the grass, listening to bird songs she used to play on her phone. It is a miracle and it is good, but it is not simple.

A few weeks after the transplant, she stood at the bottom of a hill she had been watching for months through the car window. She would climb it someday, she had told her parents, and today was the day. They started up the hill together but, after a few hundred feet, Camille fell behind. Her parents stopped and asked if she was OK. She looked at them, amazed. “How do you stand it?” she exclaimed. The heat and the sweat and the aching muscles were new to her – and frightening. She had never been strong enough to use her body this way, to make it tired.

Camille being Camille, she eventually made it up that hill, and many other hills, until sweat and aching muscles became the new normal. Eighteen months after her transplant, Camille was in England, competing as a cyclist in the World Transplant Games.

Camille is an overcomer, but that’s not so simple either. She more often speaks of “we” than “I”, and that means her parents Nancy and Eric. Throughout her life, they have researched her condition and traveled to specialists and laughed and wept and suffered alongside. The three of them have, together, clung fiercely to her life and, even more than most families, their lives are intertwined.

It’s hard to exaggerate how much better Camille’s body works since the transplant. She is no longer “the grey girl”, whose very skin announced her fragility. She can run and dance. Having lungs that work helps with other things, too, like memory and even vision. But, still, her mind cannot forget, cannot quite let go of the defenses she developed to survive.

Even church was a dangerous place. The coughs and colds in a typical Sunday crowd were a minefield for someone with Camille’s limited immunity. Kids her age didn’t understand the battle she was fighting and sometimes made it worse by teasing or leaving her out. Those wounds went deep and added to the question of why God would allow her to suffer so much, to be so different.

These are not easy questions and, even now, Camille does not have easy answers. She has made her body strong, but the instability of her past life is not easy to forget. She learned not to plan because her plans never survived, and – even now – she is wary.

There is one exception, one plan drove her even when it seemed she might not survive. Already a Registered Nurse, she is training to be a Physician’s Assistant and wants to work in Boston with one of the doctors who saved her life, helping people who are struggling down the same path she traveled.

As we talk about this, Camille laughs and describes herself as a medical nerd. She wanted her surgeon to keep her old heart and lungs so she could see them, and he did what he could. The heart was huge and weary. The shriveled lungs, once deflated, left little more than a tissue sample. Talking about this does not bother Camille. She was not her heart, not her lungs. They were not her life; only parts that enabled her life, and she is passionate about the need for organ donors. About 90% of people registered for heart transplants lose their life because so few hearts are donated.

This week, she flies again with Wings of Mercy, back to Boston to prepare for minor surgery – all the way to Boston because, after a heart and lung transplant, there is no such thing as minor surgery.

For Camille, that’s just the way it goes. Another hill to climb, another challenge to overcome, in a life that is miraculous and good, but rarely simple.

Camille

Camille was 28 when her heart stopped beating and her lungs drew their final breath.

I watched the video her mother recorded that day – Camille on a gurney, rolling down the hall, into an elevator, toward an operation so dangerous it had been not attempted here for 20 years. Maybe she’s confident or maybe it’s just her way, but Camille’s smile is bright until they stop before the final door.

“I’ll be here when you wake up,” her mom says.

“OK. I love you,” Camille replies and, finally, a tear escapes. “G’night.”

One way or another, Camille’s heart was going to stop. Doctors diagnosed her pulmonary hypertension when she was four years old and they thought she might survive for three more years.

The blood vessels in her lungs were far too small and getting smaller. Over time, her heart grew to twice the normal size, trying to push harder, trying to keep up.

When you can’t breathe, everything is hard, but Camille defied her illness. She became a cheerleader in middle school, played in the high school band, went to college and finished her Nursing degree.

Since 2011, there have been frequent trips to specialists in New York and Boston – over 20 flights with Wings of Mercy. She has exceeded every doctor’s expectation, but by the fall of 2017, she has pushed her body as far as it will go. Camille is placed on the transplant list and moves into an apartment near the Brigham and Women’s Hospital in Boston, hoping a match will be found.

Three months later, her lungs fail. To keep her alive, doctors connect her to an ECMO machine — a box that pulls blood from her body, removes carbon dioxide and adds oxygen, then pumps the blood back again. Until a transplant is found, the red box will be Camille’s heart and lungs.

A few weeks later, on a Friday night, a surgeon steps into her hospital room. There has been an accident, an unexpected death that left behind a heart, two lungs, and a grieving family who has offered them to Camille.

It is a confusing moment – tragedy and hope mixed strangely together. Camille is excited and sad and scared, all at the same time. Her parents rush across the country to join her at the hospital and, early the next morning, Nancy pulls out her cell phone and films her daughter rolling toward the operating room.

The transplant takes ten hours. Camille’s old heart, huge and weary, is carefully removed, and then her small and withered lungs. Surgeons install the donated heart and lungs, but there is a problem. For three days, Camille’s chest cavity is left open. For three days, her family and friends pray and watch and wait.

On March 29 of 2018, Camille takes a deep breath and wakes up.

“God!”, He Moaned

It doesn’t take long to know Owen. I am a stranger, but he looks at me with his big eyes, says hello, turns back to help his mom get bags out of the car. He seems older than nine, and in some ways he is. Owen has seen more trouble in his short life than most of us ever will. Nineteen surgeries. Almost thirty Wings of Mercy flights back and forth to hospitals. Organs that still don’t work right. A feeding tube that runs from his belly to his backpack. The embarrassment he feels, being different at an age when it hurts to be different.

These are hard things, but still, he looks you in eye, grabs the biggest bag he can handle, soldiers on; a little soldier who has been there and done that. He is small for his age because of the trouble. His hair sticks up a little, like kids’ hair does. His face is open and sincere in a way that tugs at something inside of you.

We get them inside the airplane, but Owen has been in many airplanes. He folds his slender body across the seat, falls asleep.

I am still thinking about another flight this week, a mission that wasn’t. We flew to another city to take a man from one hospital to another – an older man, alone since his injury, longing to get closer to home. The ambulance was waiting when we arrived and, with all the tenderness we could manage, we slid Charles from one stretcher to another, safely inside our airplane. And then it happened, something that almost never happens. We started the airplane and ran our tests and one of the instruments failed.

I will long remember what Charles said when I told him we could not go. “God!”, he moaned in a voice that sounded less like a prayer than a lament. It was the only word he said.

Again, the ambulance draws near and, again, we transfer Charles to another stretcher – one that will bear his broken body back again, to a place he does not want to go. An hour later, the airplane is tucked into a hangar for service and three pilots are droning across the state in their little rental car, back to where the day began, having apparently accomplished nothing.

“God!”, he moaned. A prayer? A complaint? Both? Who can make sense of this world, of the suffering of Owen and of Charles, of our own efforts which often help but sometimes don’t? If only we could fix what is broken, with a scalpel or pill or an airplane. But the world’s brokenness runs deeper than that.

Life is hard, and the need to love our neighbor is woven into the fabric of life – the need to strengthen and pull together the broken and lonely strands. The beauty and value and purpose of Owen and Charles are far beyond our power to calculate, even when their problems are beyond our power to repair.

This week, we will again send airplanes for Owen and for Charles, do our best to reduce their suffering and get them home again. We cannot fix but we can love. We pray with Charles, in a prayer that is sometimes a lament at the sorrow in this world: God have mercy. And we pray to a God who loves and hears: Make us instruments of your mercy.

Mugged

“A man…”, the story begins, and that’s not much of an introduction. “A woman” would have been more interesting, I think, or – better still – “A child.” But, no, there’s nothing special here. Just “A man”. And barely that, because he is almost dead.

Anything he had to attract us is gone. His physical beauty – if he had any – is broken now and spattered with gore and dust. His good clothes – those not wrecked in the mugging – were stripped from his body and jammed into a bag with his watch and wallet and phone. Perhaps he was brilliant or gracious or funny, but not now; only pitiful groans escape his bloody lips. He is the residue that remains when everything else has been taken away – all the symbols of success, all the layers that hide our frailty and nakedness.

As he lies there dying, a stranger comes along, a strong guy of good reputation, the kind who deserves a better introduction than just “A man”. But he is not the sort to get mugged and, frankly, doesn’t think much of people who get themselves into that kind of situation. He sees the wreck and walks on.

A few minutes later, another man of stature, another shake of the head.

And then, a third guy. For him, being called “A man” might be a step up. He’s been called a lot worse. Like the others, he was on his way to do something important. Unlike the others, a man bleeding in the road strikes him as even more important.

You know the rest. The third guy, the guy from whom nothing good is expected, turns out to be the hero; saves the life of a man who might have hated him, too, if he had not been mugged first.

There is often that kind of reversal in Jesus’ stories, a turning upside down of what we teach ourselves to expect. In this story, I think he’s telling us we are all the sort to get mugged, by one thing or another; by cruelty or cancer or age. After all, the cemeteries are full of people who were beautiful and smart and strong, just like we try to be.

He’s also telling us that the things we try to be are something quite different than the rich, deep, and enduring thing he calls “love” which sees great value in life, even when everything else has been taken away.

This story was Jesus’ answer to the haunting question: Am I only this body, and soon to be hidden with it under the earth? Or, to put it another way, is there really something more than this, some way to outlive our bones and find the enduring community we long for?

Jesus said yes, which surprised no one, but they were surprised to hear that mercy figured so prominently in his answer, as if you cannot separate love for God from love for those who suffer. As if it is better to be like the third guy, of whom nothing much is expected, than to be an expert on religion who sees the wreck and walks on.

This story is at the heart of our work. The “mercy” in Wings of Mercy is – we hope – his kind of mercy. The kind that honors God by honoring those who bear his image; knowing we are all, at times, in need of mercy.

“As a father has compassion on his children, so the Lord has compassion on those who fear him; for he knows how we are formed, he remembers that we are dust. The life of mortals is like grass. They flourish like a flower of the field; the wind blows over it and it is gone, and its place remembers it no more. But from everlasting to everlasting the Lord’s love is with those who fear him, and his righteousness with their children’s children – with those who keep his covenant and remember to obey his precepts.”

Psalm 103

(The story of the good Samaritan is found in Luke 10.)