Month: November 2019

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.

Review: Rick Hopkins concert

It was a moment of laughter and deep irony… 

Two songs into his concert on Sunday, Rick Hopkins paused to ask the audience, “Is this OK?  You never know what you’re going to get from a small-town guy.”  The crowd’s laughter affirmed that Hopkins’ performance was already miles beyond “OK”.  The irony was that, although the concert was held in his little hometown, there is nothing small about Hopkins’ skill or his ambitious approach to music.

When the laughter died, Hopkins warned that his songs often talk about God, and his next song was a prayer of sorts, but more like a wrestling match than a church service.

I can’t pretend to be pleased with you
and the silence you’ve made
But if this is how it is and how it’s gonna be
then the silence is where I’ll stay

Hopkins lives in Saranac with his wife and six children.  He has produced an impressive collection of music, including the albums Still Frame (2007), Where We Are and Where We Long To Be (2008), If Only It Was Now (2012),  The Remembrance (2014), and Where the Road Will Lead Us (2015).

Though his recordings feature a full band, often with a driving beat and soaring electric guitars, tonight Hopkins is alone.  His complex, riff-driven songs are carried ably by his acoustic guitar.  His remarkable vocal power and range tell each story with strong emotion.  At times, his voice is an anguished but earnest cry.  At other times, it is quiet and clear, like the stillness after an earthquake.

Hopkins’ lyrics tackle questions that ring deep in the human experience. He is a bull in the china shop of pat religious sentiment, knocking aside the false and fragile, pushing on toward whatever remains.  He reminds you of Job, the ancient bible character who asked of God, “Why do you hide your face?”  He reminds you of old king David who asked, “Why are you so far from saving me, so far from the words of my groaning?”

The concert began with It’s Not Over, which spoke of discouragement and the need for friends to suffer alongside.  “This life is wearing thin. I feel it in my bones and in my skin.”  The line “sit in the dust with you” alluded again to Job, whose friends failed him.

What I Don’t Know expressed a tension that appears in much of Hopkins’ music – the difficulty of sensing God’s presence despite his longing for that.  The song concludes, “What I don’t know… becomes you.”

Mercy and Grace also contrasted episodes of God’s apparent silence with Hopkin’s belief that God was, in fact, both present and active in his life.  “Only you could leave me this way, with weapons in hand and a bag over my face.”

With and Without described the paradox of family, in which the frictions of life together are contrasted with our need for one another.

Lord Be More Real was, as Hopkins described, “an old-time country song” with an engaging melody and simple come-to-Jesus message.

Restless Soul expressed the idea that life can be difficult and feel very long.

Lonely Heart affirmed that “You’re not alone” and encouraged the weary to keep on and “listen for the sound of knocking at your door.”

Other songs included Find My Way, Praying for the Dawn, Death is Not the End, Hold My Hand, and Never Grow Old.

I admire Hopkins’ music and honesty.  His “Hold My Hand” (Where the Road Will Lead Us) has long been a favorite of mine, clearly demonstrating his melodic sense, strong guitar skills and beautiful voice.  Much of his music is available free of charge from his website: http://www.rickhopkins.com.

The concert was attended by about 150 people and held in the Saranac High School Auditorium.  As the evening progressed, Hopkins talked freely about his personal fears and disappointments, and it became apparent that he is, after all, a small-town guy who loves his neighbors and believes that, when all that is false and fragile is knocked aside, something strong and true remains.

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.