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Stuff It Down

Dean

One Friday afternoon in August of 1991, Adam, Mary and I sat waiting for his MRI to begin.  I had scheduled the scan myself a week before when his opthalmologist couldn’t explain his double vision and referred him to a neuro-opthalmologist.  I had already become secretly concerned.  Then that morning the neuro-ophthalmologist called me to tell me he had a condition that was nearly always associated with a tumor.  I knew then what the scan would show, yet I hid my anxiety from Adam and Mary and held onto the slim hope that I would be wrong.  Mary was a mere six months from surgery for her breast cancer and had one more chemotherapy session to go.  We weren’t ready for more bad news.

Then my junior partner called from the operation room.  His patient had a rare and life-threatening complication in the middle of an operation, and he asked me to come and help.  No other neurosurgeons were nearby; it was me or nobody.  I left Adam and Mary blithely ignorant of the pending disastrous results of the MRI and went to the operating room.

The next three hours challenged my ability to segregate my feelings from my thoughts and actions, but that was nothing new.  For two decades I had learned that when you’re the one involved in direct patient care, everything else gets stuffed down.  You’re hungry or tired or sick?  You just had a fight with your wife?  Your mother and father are coming to visit?

Nobody cares.  Stuff it down.

Dr. Harvey Cushing, widely considered the father of neurosurgery, once did an appendectomy on one of his own children.  Another time he received the news of his son’s death in a car accident and took fifteen minutes of solitude.  Then he went directly to the operating room and performed the previously scheduled operation.

Stuff it down.  Deal with it later.  Even when your kid is sick.

After the crisis abated I left the OR and received the expected message that the radiologist wanted to review the MRI.  The images had been transferred to the hospital.  All I had to do was walk across the hall to radiology.  The images hung on the view boxes–crisp, clean lines of black and white on film representing the dark, uncertain future of a boy with a brain tumor.  The reality stunned me.  The words “evil incarnate” came unbidden to my mind.

I was particularly overwhelmed because I’d ordered the scan myself.  Now I had to deliver the news myself without the buffer of an outside authority figure, a professional in a white coat.

I felt terror.  I didn’t want to be the doctor; I wanted to be the dad.  But I couldn’t be dad.  Not yet.  I stuffed my feelings down again, and we did our family conference at home.  I remember only a little about that night.  Mary and Adam and I talked.  Then we included my parents and Jay and Brieanna.  Then we prayed.

The next morning I cancelled my appointments and spent the morning on the phone with neurosurgeons across the country searching for the best answer for Adam.  At the time, therapeutic options for his type of tumor were hotly debated.  Which surgical approach was the best?  What was the role of radiation therapy?  How to deal with tumor-associated hydrocephalus?  I had my own opinions, but had at least enough sense to realize my judgement was clouded.  I needed someone else to be his doctor.  Two days later we checked him into Shands Hospital at the University of Florida in Gainesville, and I could be the dad again.  Only then could I cry.

The ability to “stuff it down” is important.  No one wants a surgeon, a policeman, a fireman or an EMT dealing with their own emotions when they are dealing with your needs.  But this ability also has its own consequences, its own scars.  Once you’ve stuffed down your own fear and grief, it doesn’t easily resurface.  Then if I am insensitive to my own emotions, I could be nothing but insensitive to Adam and Mary.

I was a good cheerleader, but a bad listener.  “You have a good prognosis,” I would say.  “A ninety-percent cure rate.  I looked it up.”

They would stare back at me, sometimes blankly (Adam), sometimes with frustration (Mary).  And I would stuff down the fact that ninety-percent now terrified me.  A cure rate that sounded so good to me when I told patients now sounded way too low.  We had a ten-percent chance of repeating the current nightmare, and the next time would hold no chance of salvation this side of eternity.

Over the next few months Adam underwent two operations, one spinal tap, several weeks of radiation therapy, two weeks of antibiotics.  He lost his hair and he lost his strength.  I told him the prognosis was good.

The day after we returned from Gainesville Mary went in for her last chemotherapy treatment.  Her eyelashes fell out and she couldn’t eat.  I told her the prognosis was good.

It was a hard four months.  Then the active medical interventions were over for both of their cancers.  It was time to get better.

Adam tried to resume normal activities.  Chemistry was hard.  Sports were impossible–anything requiring hand-eye coordination was downright dangerous.  Mary tried to find clothes to fit her new shape.  They would tell me it was hard; I would tell them they had a ninety-percent cure rate.

Soon we stopped talking about illness and recovery as each of us drifted into our private world of terror and grief.  On the outside we looked like a normal family going about work, school, and community activities like anyone else.  Scratch the surface, and any one of us could fall apart.

Then, in the Spring of 1991, I bought a self-help book–not for me, you understand; I thought it would help me provide direction to my other son, Jay.  One chapter dealt with the skill of listening.  Some people don’t need instruction in this, but I did.  Don’t think of your response while the other person is talking.  Repeat what they say as a question to 1) make sure you understand, and 2) give them permission to keep talking.  This is instruction so simple it borders on stupid to repeat, but there it was.  I tried it out on Mary the next time she spoke about her cancer treatment, her scars, her fears.  She kept talking; I kept listening.

Her depression started to lift.  (She has an amazing testimony about a dramatic moment of recovery, but that is her story to tell.)  On the other hand, all the fears and grief I had stuffed down now floated up.  I had to start dealing with the fact that I and everyone I loved was going to get sick and die, and that fact terrorized me.  I could no longer be the cheerleader with “the ninety-percent cure rate,” since I was now quite conscious that the cure rate was a temporary illusion, a distraction from the fact that life has a one-hundred-percent mortality.

But I became a much better listener.

Listening, I learned, has a cost.  If you listen to those who have suffered loss and fear for the future, you will mourn.  So I mourned the scars of Adam and Mary, the loss of their hopes, and the fears of what the future would inevitably bring to all of us.  But if I mourned with them, we were no longer alone, and if we were no longer alone, we were comforted, and if comforted, loved.  And if we had love, we had hope.

Jesus knew this.  His first public declaration in his ministry was that the kingdom of God was near.  His second was that the poor in spirit are blessed because they would receive the kingdom of heaven.  But his third was that those who mourn are blessed because they would be comforted.

There are times to stuff it down, those griefs about things lost and the fears of future sufferings and separations.  But do not fear listening, do not fear mourning.  Because we are blessed to mourn.  Then we shall know comfort.  And love.  And hope.

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Peach Trees and Gifts

Darkness covered everything except the small halo created by my headlights as we sped along mountain roads well before dawn.  The roads got narrower, rougher and curvier as we neared the Smoky Mountain National Park.  My destination was the Big Creek Ranger station where I was to meet a man named Mark driving a brown Subaru and give him $75.

I had talked to Mark ten days before and arranged for him to pick up me, Adam, and Greg  Stritch at the ranger station at six AM and drive us to where we would start our Appalachian Trail section hike.  As I sped through the darkness hoping to reach the rendezvous in time I worried about the fragility of the relationship.  I didn’t know Mark’s last name; he may not know mine.  No credit card number had been given, no confirmation received.  All I had was his phone number and all he had was my promise.

In the first miracle of our day, I found the ranger station at exactly six, and as I turned into the parking lot headlights appeared in my rear-view mirror.  Mark had been as true to his word as I had been to mine.

He had silver hair tied back in a ponytail–the aging hippie look–and was gently friendly in his questions and advice about hiking conditions.  He had been raised in southern California near one of the places Greg had lived as a boy.  They had surfed the same beaches.  Mark restored old guitars, as did Greg.  He biked and swam as I did.  Common ground expanded, and we seemed to bond in our hour-and-a-half journey to Newfound Gap.

As we neared Gatlinburg, he talked about the fires last winter and the drought that proceeded it.  For ninety days the area was without rain–unheard of in that area–then the forest around the ironically named Chimneys section of the park exploded in flame.  The fire raced down the mountainside, through the valley and into Gatlinburg where homes and businesses were destroyed by the hundreds.

Literally as the smoke cleared, Mark and his wife reassessed the water supply to their own home a few miles away and came to the conclusion that they needed a new well.  Yet, they had no idea where to dig.  Neighbors had dug wells four hundred feet or more in depth, some of them still dry.  His wife had heard of a “water witch.”  They called her, and she told them she would be glad to help.

She was an elderly woman living alone in the mountains.  They picked her up and started to drive back to their property.  She rather suddenly made Mark stop the car when she saw a peach tree.  “Onliest thing to work would be a peach branch,” she said.

Thus armed she made short work of finding the optimum spot for a well on Mark’s property.  Mark’s wife, fascinated, tried the peach wand, too, and felt its power.  Mark, still skeptical, tried, felt nothing, and wondered if this was a group-think con job like a Ouija board.

“I see you need a little help,” the water witch said, and she walked behind him, reached up, and touched both earlobes.

Mark’s hands began to tingle with a sensation he could only describe as electrical and the peach wand pulled him toward the same unseen water source with a force that he was unable to resist.  Convinced, he decided to dig the well on that spot.

The woman chuckled.  Mark offered to pay her.  She refused.  “If I took money for what I did, the water would be no good,” she said.

They dug the well and found plentiful water at forty feet.

Whenever I hear a story like this one I want to jump to one of two conclusions: the story is untrue, or the story is true but the powers are satanic.  But I couldn’t make the jump with this one.

I believe Mark’s story.  He is the kind of man who loves the outdoors and music.  He makes things with his hands and he keeps his word to a stranger to make a rendezvous in the dark based on a single phone call.  He is not a teller of tall tales.

And if his story is true, what could possibly be satanic about an elderly mountain woman carrying a peach branch as she volunteers to help her neighbor find water?

I choose to think that God has imbued this woman with a special gift, given her a special tool–the branch of a peach tree–and a willingness to share her gift.

Though unique, she is not alone.  God gives each of us a special gift to use to bring the Kingdom to the Earth, here and now.  Then He gives us a tool to use that gift.  And He gives us an opportunity to share our gift and encourage others to use it.

For a long time I had a gift–or a calling–to heal.  My tools were sometimes a pen and a prescription pad, sometimes a scalpel, sometimes a drill or a microscope, and sometimes exotic instruments that are beyond description.  The lame walked, the blind received their sight, those on death’s doorstep lived–in a sense, magic every bit as powerful and amazing as the ability to find water with a peach branch.  And every time I consulted with a colleague we learned from each other, commiserated with each other, and encouraged each other–though I don’t remember taking hold of anyone’s earlobes.

Today I have a gift–or at least a calling–to be a witness.  My tool is a computer.  I don’t often get to see the magic, but I trust it happens out there somewhere when somebody reads a story and recognizes something familiar, or sees a new truth, or opens their heart and mind to the larger reality of God.

You have a gift, too; I am sure of it.  I don’t know what it is.  Maybe you haven’t called it a gift or recognized a calling, but if you stop and think about it for a moment, you will know what I mean.  You have a toolbox, too.  A stove if you’re a cook, a car if you’re a driver, a voice if you’re a preacher or a singer.  That’s your peach branch.  You can find living water for seekers in a way that is beyond your power or their power to resist, and you have a passion to share it.

Mark dropped us off at the trailhead about 7:30 AM, the place where the Appalachian Trail crosses the crest of the Newfound Gap road.  Darkness had given way to the flat, gray light of dawn.  Wisps of clouds and mists drifted through the mountaintop forest, lending a mystical quality to the morning.  Anything could happen; Brigadoon could appear.

We bade Mark good-bye and I shouldered my pack.  Before I walked away I screwed together the two parts of my aluminum hiking stick.  It has a strap and a foam handle and, on the very top, a knob of some kind of wood.  On that morning, I chose to believe it was peach.  As I started walking, I began to think about earlobes and tingling hands.

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Probably Nothing

When Nothing Was Something

Adam, Jay and I played ping-pong on the upper deck of an ocean liner cruising on the Alaskan Inside.  The night was spectacular.  Though it was ten PM, the multi-colored twilit sky gave adequate illumination for our game, the sea reflected the sky, and distant hills of pine forest slid by.

Family vacations then were a novelty, a rare period of recovery.  This one was especially precious because our family was recovering from Mary’s diagnosis and treatment of breast cancer just a few months before.

Adam was losing at ping-pong.  “I’m see two balls,” he said.  “I don’t know which one to hit.”

Brain tumor jumped to my consciousness.  I had seen dozens of patients with brain tumors whose initial symptom was double vision.  But then I quieted my alarm.  People get double vision for other reasons, I told myself.  And I’m not his doctor; I’m his father.  Let his pediatrician take care of it.

It’s probably nothing, I thought to myself.

A week later his pediatrician examined him.  He said, “It’s probably nothing, but I’d like him to see an ophthalmologist.”

A few days later the ophthalmologist said, “It’s probably nothing, but I’d like him to see a neuro-ophthalmologist.”

At this point, I no longer thought it was nothing.  I scheduled an MRI scan on my own son.  The neuro-ophthalmologist found that Adam had an eye condition that always points to a tumor in the pineal region of the brain.  A few hours later the MRI confirmed his suspicion.

I suppose it’s possible to have a child with cancer and not pray.  Perhaps there are those so convinced of their atheism, or so lost along their way, or so unattached from their child that the impulse doesn’t come.  But I suspect those are the rare exceptions.  Even those with the thinnest belief in an almighty benevolent power are driven to their knees when their child’s life is at risk.

So I prayed.  And Mary prayed, Adam prayed, and the whole family prayed together.  Then I sought out the best medical care possible.

If you’ve followed this website, particularly Adam’s posts, you will know that the subsequent road was hard.  Many things were lost never to be re-gained.  Some dreams folded up and died along the way.

But Adam survived and is cancer free twenty-six years later.  This week Adam and I are hiking together in the Smoky Mountains, one way we have of celebrating life and health.

So here is a question I have kept to myself for a quarter century.  Did Adam survive as an answer to prayer?  Or did Adam survive because of good medical care?  The person of faith in me says that my prayer was answered; the doctor in me says that surgery, radiation, and drug treatment cured him.

Both, I want to answer.  I have faith that God is real and He heard and answered our prayers.  And I have faith that medicine and surgery prolonged Adam’s life.

But is it true?  Before neurosurgery and radiation therapy, parents prayed for their children with brain tumors, and they died.  I have personally treated a teen-ager with a similar tumor who had no family, nor apparent faith, and he lived.  The medical care seems to be the most critical element, at least to my worldly eyes.

Then again, I prayed to the Almighty, the creator of the universe, and He granted my request.  Should I say now that the prayer had nothing to do with the outcome?  That the radiation would have cured him anyway?

When Nothing Was Nothing

A few months ago, my daughter, Brieanna, called.  She had developed a lump in her armpit.

It’s probably nothing, I said.  She was nursing her second baby; maybe the lump had something to do with that.  Small cuts or infections in the arm could cause a swollen lymph node.  Or a viral infection could do the same.

Two weeks went by and the lump increased in size.  She had no symptoms or evidence of breast feeding problems, injuries or infections.  It’s probably nothing, I told myself.  But I wasn’t so sure.  This is how lymphomas start.  A nightmare scenario played itself out in my mind: my grown daughter with cancer, her two little boys needing her, her devastated husband.  Such scenarios are easy to imagine after your wife and another of your children have been diagnosed with cancer.

So Mary and I prayed for healing.  Brieanna scheduled a doctor visit and an ultrasound of the swollen node.  On the morning of the the ultrasound the lump unexpectedly disappeared.

“What do you think?” Mary asked me.  I still have a small amount of credibility when it comes to family medical matters.

The residual doctor part of my brain thought, unrecognized breast infection or cuticle infection or a virus.  Probably nothing.

Then I caught myself.  When I pray for something and get it, I am sometimes quick to forget the prayer and ascribe the good fortune to natural or manmade causes.  Something wonderful had just happened.  I should not be so quick with an explanation; I should be quick with grateful praise.  The appropriate response is Thank you, Jesus.

“It was probably nothing,” I told Mary. “Or a miracle.”

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Scathed

The MRI showed the tumor as a white Rorschach blot in the midst of gray brain.  Two words bubbled to the surface of my mind: evil incarnate.  Evil had become flesh and dwelt among us.

Clinical jargon quickly took over my thoughts: Large pineal area tumor in an adolescent male presenting with visual signs typical for a tumor in this area.  Most likely diagnosis: germinoma.

My mind flips forward to surgical approaches for a tumor like this, the advantages and disadvantages of each, the myriad of complications.  Then I stop.  This time I am sickened by the violence that is surgery, and I am afraid.

This time the tumor, this incarnate evil, is in my son’s brain.

Eight years before, our family went for a Sunday afternoon family walk on the beach.  Although it was Fall, the afternoon turned warm, and the boys (then aged six and eight) started wading in the surf.  Soon they were up to their necks, and I jumped in to join them leaving Mary with baby Brieanna in her stroller.  The boys and I splashed for what seemed a mere moment in the surf before I realized we were treading water.  I looked up and could see the shore only when we bobbed to the top of a wave.  It looked a mile away.

I had heard of riptides but never experienced one.  Somehow I had to keep us together and bring us home.

At my direction Jay slid over my back and wrapped his arms around my neck as I did a slow breaststroke back to the beach.  Adam swam in front of me.  I talked and made a game of bobbing in the waves.  I didn’t want them to be frightened.  If any one of us panicked we were all doomed.

A long time later (thirty minutes? forty-five? an hour?) we made it to shore.  I stood at the waterline, relieved and exhausted, Adam next to me, also tired and probably irritated that he had to swim all the way while his little brother got to ride.  I congratulated myself that I had concealed the danger from the children and they could still feel safe.

Then Jay ran to his mother shouting, “Mommy, Mommy!  Daddy just saved us from a watery grave!”

They knew.

A few months later I saw a newspaper report about a fellow neurosurgeon who had completed his residency in Boston and took his family for a vacation to Florida before starting his career in Atlanta.  He went swimming with his two sons, got caught is a riptide and they all drowned.  A reminder–it could have been us.

But we were unscathed.

We learned that our lives could change in the blink of an eye, that our time together is not a given–it is a gift.  We also felt that regardless of how hopeless our situation, we were under God’s protection.

Eight years later I looked at Adam’s MRI and had the same feeling I had when I bobbed to the top of the wave and saw the shore a mile away.  We had a long swim before us with no guarantee we would ever reach safety.

The next several days were filled with a trip to Shands Hospital in Gainesville, a brain biopsy and shunt, a spinal tap, and an appointment for radiation therapy–all this before Mary’s last chemotherapy appointment (a whole story unto itself).  And prayer.

We prayed for healing.  And because we knew that each of our lives and each of our children’s lives are a gift, not a given, we prayed for peace and the Lord’s will to be done.  But along with these prayers, we also had a sense of vulnerability.  Evil had become flesh and dwelt among us.  We were scathed.

Adam lost his hair and he lost his strength.  The tumor shrank, but a shunt infection caused pain and high fevers requiring another operation and weeks of antibiotics.  By Christmas, all he could do was lie on the couch, dozing, warmed by Fluffy the dog.

We continued to pray.  Adam regained some of his strength, but never returned to being a gymnast.  A few wisps of hair returned to replace the dense blond mop he had before.  He kept up with his classes and finished his junior year on time.  He could walk and drive and a few months later he could jump enough that his feet actually left the ground.  The tumor remained absent on follow-up scans.

But we all lived in fear.  A headache could precede disaster, cold symptoms might be the beginning of the end, a phone call could bring tragic news.  We felt vulnerable.

So we prayed more.

Recently our adopted son, Peter Ter, was in Jacksonville to introduce his bride to his Florida families, and he reminded me of what vulnerability brings.  He spent his childhood separated from his family, wandering through south Sudan and Ethiopia seeking refuge from the violence of civil war.  Eventually, he landed in a Kenyan refugee camp where he lived through most of his teen years.  He came to this country in 2001, just before response to the 9-11 tragedy closed the borders.  Since then, he has worked hard, studied hard, graduated from UF, and obtained two Master’s degrees and has served overseas in the Peace Corps in Azerbaijan, China, and the Republic of Georgia.  A year ago he returned to the U.S., moved to D.C., got a full-time job at Peace Corps headquarters, fell in love, got married, and is expecting his first child.

He recounted some of the hardships of the refugee camp, the hunger, the physical punishments, the pain, and the loneliness.  His hope came from only one thing: a Bible that a Catholic priest had given him.  Each day he would read and pray that he would be respected, useful, and not alone, and each day he would feel God’s presence.

Now he has respect, an admirable mission, and he is loved.  But now he says that what he misses is the nearness to God that he felt in the refugee camp.  He does not miss the suffering, but he does miss the complete dependence on God that is so easy to lose when all your prayers are answered.  To be near God now, he must learn a new discipline.

Like Peter, I don’t miss the riptide.  And we don’t miss the dark days of our cancer year.  Mary and Adam carry physical scars; all of us carry emotional scars.   Those experiences forced me to cry out to God in pain and fear.

In response, He gave me a vision.  I saw the universe as one part of the mind of God.  The universe was so vast, incomprehensible, yet God was bigger than even that.  And me?  I was just a tiny part of God’s mind–just one of His ideas.  But an idea, a thought, in the mind of God!  I think my ideas are important.  I don’t give them up, I treasure them, use them, sometimes modify them.  They are what I am.  I might be tiny in the mind of God, but tiny does not mean I am unimportant.  I am His idea and part of His mind.

We have been frightened.  We have been scathed and will be scathed again.  But for now, we have been saved from evil incarnate.  And when evil comes again, I know we will never be alone.  In the mind of God we will each rest in the peace that comes from being His special idea.

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What I Learned on Day One

Adam

The day after my first two seizures I was in the hospital so doped up that I looked like the Star Trek character, Data. My flat affect was a side effect from large doses of antiepileptic drugs. But it wasn’t just my face; my brain was weird. The drugs fought with the scar tissue in my head that wanted to cause more seizures and, although seizures are now rare, my brain has never been the same.

My life as a chaplain, as an ordained minister, as someone who could go on international mission trips was over. I just didn’t know it yet. Considering how doped up I was, I’m not even sure that had I known I would have cared.

One of my chaplain training instructors told us on Day One of our training there were only four things that could happen when a patient went into the hospital:

The patient would get better.

The patient would stay the same.

The patient would get worse.

The patient would die.

He was trying to teach us that death was normal. It didn’t take me long as a hospital chaplain to understand that death was also common. So was staying the same and getting worse.

On that Day One after my seizures I had the vague assumption that things would return to the way they had been before the seizure. I didn’t understand that things were changed forever. Much like an amputee who understood that his or her life was different, I knew something had changed. But like an amputee who thought a prosthesis would return 99% of their ability, I thought the anti-epileptic drugs were going to let me go right back to work as a chaplain. But a prosthesis is not a real leg, and a drugged brain is not a normal brain.

Years later, I tried to explain to a counselor that the drugs made me feel and act differently than the “real me.” My statement was irrelevant. The “real me” no longer existed. I will need these drugs for the rest of my life. The person they make me is the person I am.

When I was sixteen I worried about the tumor, the surgery, and the radiation causing brain damage. The damage didn’t seem to appear significant at that time but it caught up with me later, in my early thirties. I was very fortunate to have more than fifteen years of Christian experience and community before the first seizure. In my mind, I went to seminary to lead a church or serve as chaplain. In God’s mind I went so I could learn to be a Christian before my mind didn’t work quite right, before the drugs pulled me into a perennial slumber.

These are the things that I learned on Day One:

Don’t drive for six months.

Don’t swim for six months.

Don’t walk alone for six months.

Don’t be alone taking care of your children for six months.

 

This is what I learned since:

Trust in the Lord.

He is with me even when my mind is too foggy to see the iceberg in front of my Titanic.

God’s love is not based on what I could do before or on what I can’t do now.

My job is to respond to God’s love with love.

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A Funny Thing About the Cat

I’ve had messages from God–a sign I asked for, a voice when I cried out in desperation, an answer to a prayer, a vision to bring me out of the deep depression, an unexpected visit from someone with a word of encouragement.  But I’m hesitant to claim that God speaks to me in special ways.  To believers, I sound prideful; to people without faith, I sound quite insane.

But really, what good is a God who doesn’t speak to you?

On a Sunday afternoon in August a few years ago, the temperature was brutally hot, the drive across the Buckman bridge was aggravating, and the call was urgent.  A fifty-year-old woman had arrived by ambulance at the Orange Park emergency room unconscious and hypertensive.  A CT scan showed hemorrhage deep in her brain.

A shadow of hopelessness started with the first call and hung over all subsequent events.

A bleed like that normally causes death or severe disability, and rarely does surgical intervention do anything to alter the dismal course of events.  But the first task is to decide if the problem is indeed hopeless, and this requires urgency.  If anything beneficial can be done, it must be done quickly.

I finally arrived and walked across the frypan hot surface of the parking lot in back of the hospital, the shortcut to the radiology department.  I wanted to see the scan before I saw the patient.  I wanted to know how bad the bleed before the family asked.

Blood filled the deep areas of the brain called the basal ganglia and dissected into the upper reaches of the brainstem, the part of the brain that allowed for consciousness.  With a bleed like that, one could survive, but one would never wake up.

The problem is that it is always hard to stop saving a life.  Families have difficulty giving up.  Doctors are trained to keep people alive at all costs.  Liability lies with doing too little, never doing too much–even if the cost is prolonged suffering for both the family and the patient.  I headed to the ER for what I expected would be a difficult discussion with the family.

The emergency room doctor intercepted me.  “There’s something you should see before you talk to the husband,” he said.

“I’ve already seen the scan,” I replied.

He nodded.  “Yes.  But we got a chest x-ray after she was intubated and put on the respirator.”

  I had only a moment to wonder why he wanted me to see it.  He led me to a view-box upon which hung a chest x-ray that showed lungs riddled with tumors of various sizes.  “Metastases?” I asked.

“Yes.  Breast cancer,” the ER doctor said.  “I went back after the x-ray.  She’s got a big mass in her left breast.”

We went together to the patient.  Her depth of coma was expected from the findings on the scan.  A tube protruded from her mouth, connected to a respirator that filled her lungs every five seconds.  Cardiac monitors beeped in the background.  I untaped her eyes for a brief exam of her pupils and reflex eye movements, then re-taped them and confirmed a three-inch mass in her left breast.

You can’t die twice, but two things can kill you.  If I had any doubt about the advisability of recommending aggressive intervention, that doubt was now dispelled.  If, against all odds, we could save her life with an operation and a long, difficult hospital and rehab course, the likely result would be to leave her in a vegetative state.  Now her exam and the chest x-ray told us that if we intervened, she would also die a prolonged painful death from disseminated breast cancer.

I went to talk to the husband, uncertain how approach this double tragedy.  But I had time.  The urgency was gone.  Only the cloud of hopelessness remained, now darker than ever.  So I asked him what happened.

He started her story a few months back.  They were simple people, living in a small house on a rural lot.  She had lost her job and her health insurance, and didn’t have the energy to find another.  She stopped taking her blood pressure medications.  Although public assistance was available, she didn’t want to be beholding to the government.  Then today she had a headache and collapsed.

I told him about the bleed in her head, and that the prognosis was very poor.  Even if she lived, she would never be able to live independently again.  Then I told him that she also had breast cancer, a large tumor that had already spread to her lungs.

He told me she’d discovered the lump a few months before, but didn’t want to see the doctor about it–possibly for the same reasons she didn’t get the blood pressure medicines.  She didn’t want to be beholding.  But she seemed to have another reason.  I don’t want to know, she told her husband.

I understood.  Every day she didn’t go was one more day no one could give her bad news.  But inwardly she must have been preparing for the end.

I recommended that we treat her with comfort measures only.

He nodded as he stood looking somber and alone.

I murmured something in the line of sympathy and started to move away to begin the process of reversing the well-oiled medical system that prolonged lives and change it into a system that provided comfort.

Then he said, “It’s a funny thing about the cat, though.”

For a moment, I thought I misunderstood.  “The cat?”

He kept his gaze fixed on the curtain around his wife’s gurney.  “Yep.  About two months ago a stray cat showed up on our porch.  Never had a stray before.  She started feeding it and it stuck around.  Since he looked like he was going to stay, she took him to the vet.  She asked the vet about a lump on the cat’s side.”

“Uh-huh,” I said.  People had many different responses to sudden loss.  He was the first I had heard talk about their cat.  I didn’t want to discourage him.  “Go on.”

“The vet said the cat had cancer.  We should put it down.”  He continued to stare at the curtain.  “But she said no.  As long as the cat was comfortable, we would take care of it.  The lump is bigger, but the cat is still there.”

He turned his eyes from the curtain and met my questioning look.  “So I’m just saying.  It’s a funny thing about the cat.”

The patient died thirty-six hours later, comfortable with her family at her side.  I don’t know about the cat.  But I had to agree with the husband: it was a funny thing.

I am convinced of God’s personal love, and that He will use any means to to bring us a message that we need to hear.  One day we will face our death or the death of a loved one.  Often we face difficult decisions at the end.  He tells us in His Word to prepare, and to not be afraid.

But sometimes we need a very personal message that He is with us always, that even in the shadow of death there will be time and space for love.  I am confident that He will find a way to give us that message, and comfort to those left behind.  Sometimes He even sends a cat.

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God in Catastrophe

Adam

During my time as a chaplain I prayed with dozens, maybe hundreds, of patients. Sometimes I felt I was doing a good job. Other times I felt I was completely inadequate.

One night I was the on-call chaplain and got a late call. A Roman Catholic family wanted a priest to come and perform what is commonly called last rites. Unfortunately, there was no Catholic priest in the hospital and little time because the patient needed emergency surgery. At first they didn’t want a Protestant chaplain, but fifteen minutes later they wanted anyone they could get.

I ran and got there just as they were about to roll the patient into the operating room. The family asked me to say a Hail Mary. They settled for holding her hand and saying The Lord’s Prayer. When we finished they wheeled her through the doors. She died in surgery.

The last words she heard on this earth were, “…and deliver us from evil, for Thine is the Kingdom, and the power, and the glory, forever. Amen.”  And the next thing she heard was choirs of angels.

In May of 2007 all the hard work of seminary seemed to be paying off. I was finishing up my second CPE unit (hospital chaplain training) and applying for a residency program. I was in the process of being ordained by the United Methodist Church. We were close to reaching our family goal of having Leslie home taking care of the kids and me in the work place bringing home the money.

Then one Saturday morning, our family was working together to spruce up our yard. I was trimming some overgrown shrubbery. The next thing I knew I was looking at a field of brown and someone was asking me about my address and phone number. As my eyes cleared I realized that I was talking to paramedics. I wouldn’t have been able to answer their questions without Leslie’s help. But Leslie convinced the paramedics that she could take care of the transportation–because she wanted me to go to the hospital where she worked and where I was doing my training. We got into our car, and she drove to the emergency room.

Along the way I called my parents and the pastoral care office at the hospital. As we drove I started feeling worse and worse. I felt nauseous and had what epileptics and neurologists call auras, a combination of vibrations, sparkling lights and earthquakes inside my head. We couldn’t get to the hospital quick enough as far as I was concerned. When we pulled up I quickly opened the door, undid my seatbelt and put my feet on the pavement. I was too dizzy to stand up. Leslie ran to get someone with a wheel chair.

I remember being impatient and  uncomfortable–then nothing until I woke up in a hospital bed with restraints on my forearms and ankles. As a chaplain I’d talked to many patients in restraints, but now I was the patient, and the feeling was definitely odd. One of the chaplains from the pastoral care office came in, and I could greet her by name, though most of that day I was disoriented. The powerful anti-epileptic drugs knocked me out of reality. Two grand mal seizures within an hour had completely exhausted my muscles, and I could barely move.

I remember one of the chaplain supervisors telling my mother that I’d gotten into the residency program, news I was eagerly anticipating, but I was too far gone to care.

That evening I had an MRI to see if my brain tumor had come back. I couldn’t experience anxiety and fear before the scan, nor feel the joy of relief after learning the answer was no.

I didn’t experience God that day, not personally. But that was because I couldn’t see the other side of my reality. But God showed up.

You could argue that He always shows up, and this is true. But we only become aware of His presence when we pray. If we have a seizure, or are drugged, or just plain too sick to care, we are unable to pray and unaware if the Lord is present or not. When we need Him most, we are unable to call His name.

I am very blessed. From the moment I called, my mother contacted our family and her prayer partners, and by the time the hospital staff extracted me from the car seizing and hauled me through the lobby to the ER, a hospital chaplain, a minister from our church, my parents and their five prayer partners were praying for me and Leslie.

They prayed for my family while they were traumatized from seeing me have a seizure. They prayed for my health, and that I wouldn’t have a recurrence of brain cancer. They prayed for God’s presence to be close to us during a hard and frightening time. And the prayers were answered. God comforted my family, He kept me from further harm, He gave us peace.

Now I try to prepare. Two prayer partners and I meet each week, praying for everything from help finding our lost sunglasses to the forgiveness of sins that seem unforgivable, and healing from illnesses that seem incurable. We know each other and each other’s business. My prayer partners see my blind side, the things I don’t know about myself.

When catastrophe strikes me again, these two people will pray for me. I feel good about it; they’ve already practiced.

Do you know who will pray for you when you can’t pray for yourself? Maybe it will be a minister or a priest or a hospital chaplain. Maybe a family member. But maybe you want someone who has practiced. And the best way to do that is start now.  Find someone you trust with your blind side, and share your prayers.

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Acts of God

 

In the third year of medical school, on the second day on neurosurgery, I am assigned to shadow the resident Dr. Fernando Diaz and follow him to the University Hospital Emergency Room at about nine PM.  An old man lies unconscious on the stretcher.  He had taken out his garbage, slipped on the icy sidewalk, struck his head and didn’t wake up.  Despite an operation–the first craniotomy I ever saw–he would die the next day.

I learned a lot from his case–how to  evaluate the unconscious trauma patient, the steps of emergency brain surgery, quick evaluation and treatment of bleeding disorders.  Yet, the big question, the Why, remained unanswerable.  Why this time, after taking out his garbage thousands of times, walking on icy sidewalks every winter of his long life, why is this the last thing he does?

A couple of years later, a young woman walks across the New Haven green on a blustery Spring day.  A limb breaks in the wind and falls, striking her on the head and knocking her to the ground.  Rescue is called and she is brought to the ER but it is too late.  She is dead on arrival.

Two years later, an eight-year-old boy is playing on the sidewalk waiting for his school bus on the busy Whitney Avenue.  He trips and falls into the street in front of a garbage truck. Brakes screech, horns blow, but still there is a sickening thump.  Traffic stops.  An ambulance arrives and the boy is transported to the ER on a respirator.  He was only a couple of years older than my oldest son and got hit in front of the preschool my son attended.

An act of God, according to the Wordbook dictionary, is a natural and unavoidable catastrophe.  Most ER trauma cases are not acts of God.  Someone pulls the trigger, someone gets drunk, someone drives too fast–and someone suffers an avoidable catastrophe.

But sometimes a guy just takes out the garbage.  Or a woman walks across downtown green space.  Or a kid plays while waiting for the school bus.

The hospital staff has a funny reaction to the acts of God.  Everyone does their job, but I hear the murmurs and the whispers.  He should have put salt and sand on his sidewalk.  She should have waited out the storm before going for a walk.  Kids shouldn’t play so close to the street.  We blame the victim.

It is a defense mechanism.  We want to believe that a catastrophe is someone’s fault.  If we behave and others behave, we will be protected.  Otherwise the world is unpredictable and dangerous.

But sometimes there is no one to blame except God.

I learned from the first case, I watched the second case, but on the third case, the kid hit by the truck, I was the senior neurosurgery resident directing his care.  I saw him in the ER as the original resuscitation took place at nine AM.  Even after oxygen and blood pressure were restored his exam looked grim.  A CT scan showed no blood clots to evacuate, only a diffusely injured and swollen brain.

I called our director of pediatric neurosurgery and described the case.  He asked me my assessment, and I told him it looked hopeless.

Well, almost hopeless.

We believed that young children shouldn’t die.  We believed that maximum effort and state-of-the-art skill and knowledge would be rewarded.  So we gambled with the almost and ignored the hopeless.

I placed an intracranial pressure (ICP) monitor to guide treatment, optimized the respirator rate and administered various medications to control brain swelling.  By two PM, these measures had failed.  Another CT again showed diffuse brain swelling.  At three PM we took him to surgery to remove a large part of his skull so that even as the swelling increased his brain would not be compressed and the damage would be limited.  But even as the skin sutures were placed, his brain continued to swell.  The ICP went up again to dangerous levels, and then to levels incompatible with life.  By six PM, the battle was clearly lost.  The child would die.  A catastrophe.  An act of God.

This particular case affected me deeply.  I had been part of surgeries that had in one way or another failed, and this was not the first person I had seen die, nor even the first child.  Although always difficult and sad experiences, I had become inured.  But somehow this case cracked my shell.  Maybe because this time the victim looked too much like one of my own children.

So I buried myself in the paperwork; the demands for immediate hands-on action all day had outstripped the time available to document the required medical records.  But mostly I didn’t want to talk to anybody.  I was afraid if I had to talk, I’d cry.

I know what God told Job:  Where were you when I laid the cornerstones of the universe?  You’re just a man, you can’t understand the grand scheme of things.  At the end of the book, God gave Job a new family.  All very comforting and logical.

Until one is holding a dying child.

Then I want to know the Why.

And I if my sons were taken away by an act of God, replacement boys coming along a few years later might carry blessings, but the grief from losing the first two wouldn’t go away.  As a matter of fact, I expect that the love I would feel for the replacement boys would carry a undercurrent of terror–the fear of another loss.

As I hid behind the paperwork in that pediatric ICU, the director of pediatric neurosurgery, the one who had been guiding and encouraging me all day, came and stood across the desk from me.  “There’s someone outside to see you,” he said.

I respected this man for his knowledge and skills but didn’t trust him for emotional sensitivity.  He made too light of difficult situations.  He had been inured.

I shook my head; I was still afraid I would cry.  Besides, no one came to see me; I was just the resident.  Or worse, maybe the parents were waiting.  I couldn’t face them.  Not yet.

“Come on,” he said.

“No.”

He stared me down, long enough that he knew I was in pain, and I knew he wasn’t going away.  “Come on,” he said.

I got up and followed him.  After all, he was my boss.

In the hallway outside the ICU stood a teen-age girl in a cowboy hat.  Long, dark hair spilled out from under the right side of the hat, but no hair on the left, and maybe a hint of a scar in front of her left ear.  She smiled, but it was crooked, and she leaned on one of those aluminum canes.

Then I recognized her.  Six weeks previously, she had bled from something called an AVM, a congenital malformation, into the part of her brain that controlled speech and language.  She needed emergency surgery to save her life, but the cost had likely been the permanent loss of speech and movement on the right side of her body.   Two weeks later she was discharged to a rehab facility, aphasic and hemiplegic.  Another catastrophe.  Another act of God.

Now here she was, only a month later, walking with a cane–but walking already at just six weeks after her injury!  If she could walk with a cane now, she might be able to run in another six months.  Just to see her lifted my spirits.  Could she talk?

The words were slow and overly round like her tongue was too big.  “Thank you,” she said.

I don’t remember what I said.  I remember I had to hide my tears, but now tears that held a measure of relief, hope, possibly joy.

Maybe it was a coincidence that this thoughtful young woman took this particular moment to say thank you.  But maybe God sent a messenger to tell me that I couldn’t know everything He has to know, and I won’t know the outcome of many of the things I do, and the important thing is to trust Him.

I expect that God sent comfort to the parents of the child.  Because God doesn’t just watch our suffering from on high.  He gets down and dirty with us, and gets tortured and killed.  The passion of Christ was a historic event, but I think in some cosmic or mystical sense that the crucifixion and the resurrection is also a continuing experience.  When the kid gets hit by a truck, Jesus gets hit by a truck.  When Jesus rises from the grave, the kid rises from the grave.

We believe God is good all the time until we face catastrophe.  Then we wonder.  But we do not have to wonder if God cares.  In the Old Testament, He promises a time that He will wipe away all of our tears.  In the New Testament, He weeps for the death of his friend, Lazarus, and again for the destruction that will come to Jerusalem. When the parents of a dying child weep, God weeps.

I understand now why the book of Job ends with his fortune and family restored.  Those aren’t really replacement children.  They represent the fact that for every “act of God” there is an act of mercy.  He will dry your tears.  Sometimes He will restore your fortune, sometimes He will send another child.  Sometimes He sends a girl with a cowboy hat and a crooked smile.

 

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Random Acts of Violence

A three-year-old boy is brought to the ER by Rescue, CPR already initiated at wherever they found him, bruises all over his body, left arm askew, certainly broken, not only unconscious but with the floppy motor tone and fixed pupils that signal brain death.

A thirty-something year-old woman is brought by Rescue at nine AM, her face a mass of bruises and lacerations, both fresh and old.  Her nose is broken, her eyes are blackened, her lip is cut.  She is alert and angry and hostile and still drunk.

A twenty-three year-old man is brought by Rescue from a convenience store after a robbery.  He has a red hole in his face, almost indistinguishable from his nostril.  Unlike the first two, he articulates what happened.  “I told him, ‘Don’t shoot, you can have the money.  Here’s the cash register.  Just don’t shoot.’  He shot me anyway.”  This he kept repeating, convincing himself that this actually happened, as he adjusted to a new reality. Traces of anger dawned as the repetition continued with the awareness that he had been shot anyway by a stranger who already had the money.

This is my introduction to the Emergency Room in New Haven, Connecticut; I am in shock.  In my world children were never beaten, women were never struck, and no one I knew would shoot anybody unless the other drew first.

Up until this point I had been willing to believe that all people were good at heart but were sometimes misunderstood or misled or emotionally distressed, and at moments made mistakes, things for which they were sorry and would repent and ask forgiveness, if only given the chance.  I am an idiot in my innocence–not innocence as in the absence of guilt, but innocence is the sense of naivety–and I am now confronted by random acts of violence that must change my understanding of my fellow man.

The world is not filled with the innocent until proven guilty, but with the guilty, only some of whom are convicted.  Maybe the motivations that move society are not generosity and enlightened self-interest, but self-interest alone, and the rough calculation that all actions are permissible as long as the negative consequences can be avoided.  Thus, it is okay to silence that whinny kid with a swift kick or two, to slap that drunk wench into submission, to shoot that kid who might someday identify you in a line-up.

And if that is the way the world works, I have been playing by the wrong rules.  The choice is not whether to do good or to do evil, but whether to be a victim or not.  I need to look to my own interests first, then my family, then my friendships–although I shouldn’t think of them as friendships anymore, but as alliances.

I blame my father for my idiotic innocence.  He was not only a gentleman but a gentle man.  I remember only one time that he raised his hand to spank me, and this ironically for fighting with my brother.  I don’t remember the blow, but I remember what he said afterward.

“Don’t you know,” he said, “how little time we have together?  What few chances to love each other?”

I didn’t know what he was talking about.  My life was a continual competition with my brother.  We fought out our differences.  Sometimes I won, sometimes I lost, and always I prepared for the next battle.  What was Dad thinking?  He’d been an officer in an armored division in Europe during World War II; certainly he must understand the need for conflict.  Dad’s words puzzled me then and still puzzled me again as I stood on the bloodied floor of the ER.

A choice needed to be made: innocence or preparation for battle; allow mercy or demand justice?

But the practice of medicine demands mercy.  Sooner or later, the one who killed the child, the one who beat the woman, the one who shot the store clerk, all come in injured themselves.  And they are cared for with all the same resources that their victims received, perhaps with more reluctance on the part of the caregivers, but with the same skill.  Even knowing better, we act as innocents; our only battle is with the disease or the injury.   Justice is invisible, but vengeance is never an option.

Still, I wonder if I am a sucker, never ready for battle.  Mercy is my discipline, but a small ticking clock in the back of my mind waits for justice to show herself.

Years later I testify at a murder trial.  The victim had suffered a severe head injury resulting in an acute subdural hematoma and multiple areas of bruised and swollen brain.  Acute and chronic alcohol abuse complicated her care by liver and bone marrow damage.  In short, her body did not have the reserves to heal her wounds or stop her bleeding.  Despite a major operation and a week in intensive care she succumbed to her injuries.

At the trial, the woman’s boyfriend was accused of beating her to death.  My testimony is limited to answering questions from the prosecutor about the mechanisms of her head injury; the defense attorney asked no questions.  The boyfriend is convicted.

Justice finally appears; I should be satisfied.  But I am not.

What I know is that the woman died as the result of her alcohol addiction.  And whether or not her injury was the result of a fall or an assault, her boyfriend was convicted as a result of his alcohol addiction.  The blame lay less in the blow to the victim’s head than to that obscure first drink given to a person emotionally and physically susceptible to addiction, and the lack of opportunities for redemption along the way–and this is true for both the victim and the perpetrator.  They fell like two lost children clinging to each other in the dark and stumbling together.

Justice appears and is served, but she is a blind and cruel lady.  I am happy to turn away from the courtroom and back to the hospital where mercy reigns.

Sometimes I worry about my adult children.  They are never prepared for battle.  I have watched my them treat others with mercy more than justice.  They have committed random acts of kindness: befriending refugees, paying for a dangerous tree to be removed from the yard of a stranger who couldn’t afford it, sticking with a friend who was not only sick but crazy.  They acted unconcerned about how these others got into their situations.  They acted like suckers.

Dad would have been proud.

Random acts of violence can rob me of my innocence and drive me to seek justice instead of mercy.  But innocence is not a possession to be lost; it is a quality to be chosen.  And if innocence is chosen, random acts of kindness prevail.

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Troubles and Worries

The “troubles” that one patient experienced was not a “worry” to the staff at the Department of Corrections until the inmate showed up late for meals and roll call.  Months later, he wended his way through the medical system and got a neurosurgery referral to Jacksonville.

As this white-haired, stoop-shouldered African-American shuffled along in leg irons, his shuffle looked little different from other men in leg irons.  But when the guard removed the shackles, the inmate clearly had the spastic gait of a man with spinal cord compression.  Further testing confirmed a narrowed spinal canal and degenerative disk disease in his neck as the cause.

This patient, whom I will call Daniel, needed a decompressive cervical laminectomy.  But in truth, few operations worry me more.  The operation is necessary–without surgery he would be wheelchair confined within several weeks, and lose hand function shortly thereafter.  And though the results of surgery are usually good–90% of patients improve, and another 9% will stabilize–another 1% will be paralyzed as a complication of the surgery.

It’s that remaining 1% that worries me.  If Daniel gets worse, the fact that ninety-nine strangers got better after the same operation will give him, and me, little comfort.

We talked for a long time about the costs of surgery–not the financial costs, but the costs in terms of pain, suffering, recovery time and, especially, risk.  Daniel had vague fears about why he couldn’t walk easily anymore and what the future held.  I needed to share my medically-based fear about his future without surgery.  Then I needed to share the hope that surgery would make him better, and my fear that it could make him worse.  This is a melding of purpose: his hopes become my hopes, his fears become my fears.  His troubles become my worries.

I scheduled the surgery.

Then we waited.  The Department of Corrections, due to security concerns, budgetary constraints, and logistics, decides when the surgery will take place.  Literally months passed. Calls to the D.O.C. went unheeded.  I became increasingly worried that by the time the surgery was done, it would be too late; the spinal cord would already have been permanently damaged.

Finally, the surgery was scheduled and Daniel showed up at the hospital with barely enough time to complete his pre-op checklist.  He looked inexplicably content, shackled to a stretcher, a complacent guard at his side.  It had been so long since we talked that I wasn’t sure he remembered anything about his condition or the surgery.

I wanted to give him the whole pre-op talk again with time for questions and answers, give him a day to think about it, and return for more questions if necessary; it was that serious.

But I didn’t really have that option.  If I cancelled this operation, I didn’t know if the surgery could be re-scheduled before he was wheelchair bound.  I had only a few minutes.

“The operation could kill you or paralyze you,” I said.  “But it’s your only chance to walk normal again.”  I skipped all the information about expected recovery times, percentage chances, pain, or even where the incision was going to be.

Daniel smiled.  He still did not appear to be nearly as concerned as I thought he should, and it worried me.  I wondered if he was intellectually impaired.

I started again. “You understand the risks–”

“I heard you, Doctor,” he interrupted, still with that inexplicable smile.  “And I remember what you tol’ me before.”

I must have looked unconvinced because then he reached out with a shackled arm and patted my hand.  “I got troubles,” he said.  He reached over and touched the crucifix tattoo on his forearm.  “But I ain’t got no worries.”

Worries filled me, but by comparison to Daniel, I had no troubles.  I didn’t have decades to serve a prison sentence, a crippling illness, nor did I face a painful and life-threatening operation.  At the end of the day I was going home to a comfortable house and a loving family; if things went well, he would go back to prison.

The operation did go well, and Daniel walked again, normally now, able to get to meals and roll call on time.  He still had troubles, of course.  But spinal cord damage wasn’t one of them.

Days of trouble have come to me before, and they will come again.  But when they come again, I remind myself:  like, Daniel, I ain’t got no worries.