Category Archives: The Book

Chapter 2: Asking Why

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Asking Why

 

It is natural – and essential – to wonder why children are born with things like spina bifida.  There are two ways to ask the question.  When I first asked, “Why did this happen?” it was a question for science.  I initially turned to medical researchers and epidemiologists for answers.

Wondering why this was to be Blaine’s particular destiny, his karma, came later.

At first I just wanted to know why it happened at a cellular level.  What biological message directed the spine to stop growing.  What particular mechanism had gone awry.

I soon learned that researchers had decided that neural tube defects like spina bifida are partly genetic, because there is a higher incidence within families.  I discovered that once a mother has a child with spina bifida, her future children are more likely to have it as well.

But researchers had also observed a very puzzling geographic pattern.  Spina bifida occurs at much higher rates in some parts of the world, and at distinctly lower rates in others.

Some epidemiologists noticed that births of children with neural tube defects are not evenly spread through time.  Clusters of births – in both space and time – are frequently recorded.

I felt a certain irony when I discovered that my child had been born with something with such a fascinating geography.

My college and graduate degrees had been in geography, and while I was pregnant, I had been teaching geography at Portland State University.  Looking at how things are distributed through space has always fascinated me.  I think it is responsible for the “outside looking in” view I tend to adopt, and is even why I frequently try to imagine seeing the earth through the eyes of an alien.  One of my earliest memories is gazing awestruck at the deep and vast night sky that appeared through slices in the fir trees of southern Oregon, thinking how small and remote are both a child and her planet in a space that reaches so far.  As a 10-year-old living at the edge of the woods along the South Umpqua River, I had surveyed, and then mapped on butcher paper, the 200 or so acres that surrounded our house.

Through college, and especially while in graduate school, I had become accustomed to questionable looks and derisive comments when I revealed the subject of my major.  “There’s a Ph.D. in geography!” more than one person marveled, “I mean, after you learn all the states and capitals, what else is there to do?”  I tried, but didn’t always succeed, in using a lighthearted tone when I replied that we move on to memorizing county seats.

In college, while living in an inner city neighborhood in what was the second most populous metropolitan area in the country, I studied urban geography.  I returned to Oregon for graduate school, and immersed myself in cultural geography, studying how culture is spread through time and space, specializing in the geography of China.  I wanted to learn about a culture that was as different as could be from my own.  I selected China because at the time it was the only major region of the world where one could not purchase Coca-cola.

During and after leaving graduate school, I examined how and why humans have changed the landscapes we have inhabited.  I looked at vegetation patterns in Oregon, and had done a year-long study of trees immigrants had introduced into Oregon.  For several years I taught a very popular course on the geography of Portland.  In fact, I had begun writing a book about Portland’s environment, explaining how the natural world had been changed by the people who have lived here.

But the truth was, I had my own nagging doubts about devoting one’s life to studying geography.  I found myself wondering, “In the scheme of things, how much does this really matter?”  Although I could justify my intellectual curiosity in the subject, my life’s work needed a better reason for being.

While I was pregnant, I was invited to participate in a study that was trying to figure out why the rates of certain kinds of cancer were higher in some parts of Portland than others.  If we could solve this geographic puzzle, we might be able to figure out the cause of the disease, and eliminate it.  This is one way a geographer could save lives, I thought.  It meant I could keep doing geography, because it mattered after all.

And then my son was born with a hole in his back, and nobody knew why.  Even while I struggled to realize what had happened, and begin to understand it, I started asking questions.  Within a few days, I knew I had happened upon a startling geographic enigma.

One study found astonishingly high rates in southern Wales, and in Northern Ireland.  In the United States, proportionally more children are born with spina bifida on the east coast than the west.

For a time, people thought it might be caused by a fungus that grows on potatoes.  One researcher questioned a possible link with vegetables in the brassica family – including broccoli, cabbage, Brussels sprouts – that contain goitrin.  My heart skipped several beats when I read that, because I remembered that shortly before I became pregnant, I had begun to get violently ill every time I ate broccoli, a vegetable that up until then had been my favorite.

When a large percentage of children with spina bifida were born to workers in tire factories in England, researchers questioned whether it was caused by a chemical added during the manufacturing process.

Several scientists had attempted to explore the causes of spina bifida.  When I read the studies, they seemed incomplete.  Either they had too little data, or the data was unreliable.  There were too many variables, and no way to isolate them.  The studies were retrospective, and since nobody knew exactly when exactly what went wrong, no one really knew what questions to ask and when to ask them.  It seemed to me all the researchers had given up too quickly.  Solving this riddle would require a massive amount of very carefully selected data.  It would be an enormous undertaking.  It could take a lifetime.

Clearly, I was the one to undertake this task.  I would combine the skills and training of a geographer, with the commitment and determination of a mother.  I understood that this was to be my destiny, my life’s work.  I did not shrink from my task, this was to be a crusade.

With Blaine snuggled in his pack, I made several trips to the Medical School Library at Oregon Health Sciences University.  I looked over the card catalog and medical indexes, and tracked down every relevant article I could find in the stacks.  I had to use a medical dictionary to understand some of them

First I needed to understand to what extent spina bifida was genetic, and to what extent it was not.  It couldn’t be entirely genetic, I reasoned, because there are such striking differences in the incidence of births over time.  The rate varies over decades, and is even higher during certain seasons of the year.  If it were merely genetic, wouldn’t the rate be constant?

Blaine was but three months old when I made an appointment to meet with the man who several had identified as Portland’s leading neonatal geneticist.  I spent hours developing a long list of questions to put to him, and hoped to convince him to help me undertake an investigation.

Finally, the day arrived I was to meet with Dr. Gerald Prescott at Oregon Health Science University’s spina bifida clinic.  Blaine was snuggled in his usual position in the baby carrier tied to my chest when we took an early bus downtown.  It was a partly overcast but pleasant autumn day, and we made the most of it, strolling along the sidewalks of the transit mall and surrounding blocks.  We sat for a while on a bench under the majestic elm trees that surround Portland’s downtown library, smiling at dozens of others who were also out enjoying the day.

I was rather amused, knowing that the people who smiled back at us were seeing us as typical mother and her child.  They couldn’t tell that Blaine was paralyzed.  And they didn’t begin to suspect they were looking at the mother who, because of the son who clung to her bosom, was at that moment preparing to take the first step along a path that would lead to a major medical breakthrough.

Soon both Blaine and I began to feel the ravenous hunger that can suddenly strike an infant and nursing mother, so we stepped into the Chinese restaurant across the street for a bite to eat.  Blaine settled in for his midday meal, and I ordered fried rice.  As I sipped tea, I reviewed the list of questions I had prepared for the geneticist.  I was especially curious about how much genetic information had been collected about families who had a child with spina bifida.  I wondered why no one had asked to look at my genes since Blaine was born.

The waitress delivered the fried rice, and I continued scrutinizing my notes as I began to eat.  I daydreamed about how a research study might be designed that would find the missing link, the key to this mysterious and elusive puzzle.

There has to be an answer, I vowed.  I reminded myself that we may not know what causes spina bifida only because no geographer has taken on the problem.  I looked down and saw that Blaine had fallen asleep at my breast.

Maybe what’s important is not where the child was born, I thought.  I cracked open the fortune cookie, and began to nibble on the crunchy shell.  Maybe we need to look at the place conception occurred.  Maybe it was something momentarily present in the environment when the sperm and egg united.  Or maybe it has to do with where the mothers spent their early lives, when their reproductive organs were forming.

Or maybe it’s not the mother at all.  I fingered the tiny slip of paper I had pulled from inside the cookie.  Maybe it’s something to do with the father’s background.

I glanced at my watch and noticed it was nearing time to catch the next bus up Marquam Hill to the clinic.  If the geneticist can help me understand what part of this puzzle is genetic, I thought, then I can discover what geographic factors might be involved.  First, I’ll have to figure out what data to collect.  And where I can collect it.  I straightened out the fortune and looked at the message printed on it.

Suddenly I felt as if I had received an electric shock, strong enough to lift my every hair from my skin.  Blaine awoke with a start.  I closed my eyes, shook my head, and looked at the fortune again.  Something slowly crawled all the way up my spine.

I looked down at Blaine and said the words aloud to him.  “Man can cure disease,” I read, “but not fate.”

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Did I mention I was writing a book?

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Please note the use of past tense.  Was writing. No new words for quite a while.

I was really hot on this book thing for quite some time. Started it in a writing group led by Susan Stanley (love her!). Even got so far as to have 20 of my best friends over for a reading out loud session.

But here’s the funny thing: once I got in a real relationship and felt happy, I stopped writing. I would hate to think one has to be unhappy or unfulfilled or miserable to write. But apparently it helps.

So here’s what I’ve decided to do… I’m going to post chapters as blog entries.  Not even going to read them over first to make sure I still agree with what I wrote. It’s an experiment. I have no idea where this will lead. But I’m hoping this helps me figure out what to do next.

So here’s the introduction:

THE BOOK

INTRODUCTION

By Marie Deatherage

October 15, 1993

Sometimes when I come upon a scene, I like to imagine what I would think if I were an alien from another world, and this is the first exposure I have to the earth and its inhabitants.  I try to envision whether there would be any way to make sense of what I see, or whether the scene would drive me to turn heel and flee to my spaceship, without a backward glance.

I often do this when watching television – certain music videos, for instance.  Or Beavis and Butthead.  American Gladiators.  A Current Affair.

I try on my alien identity now.  I am standing next to a wall, looking across a vast room.  It is utterly quiet.  This silence is dense and heavy.  If you were to stretch your arms in front of you and lift your palms upward, you would feel this silence flow thickly through your fingers.

The room I am surveying is not empty.  Indeed, it is filled with several hundred people who are seated in pairs, across from one another, at row after row of tables covered with white linen.  The several hundred heads are bent.  The faces of those I can see from my vantage have gazes intently fixed on a section of the table in front of them.  Now and then, someone on one side of the table reaches out to move a small object, then hits a rectangular box in a slapping motion.  It makes a distinctive clicking noise that interrupts the silence for a glancing moment, but does not break it.

It is not hard for me to feel like an alien here.  All the heads I see are male.  They take no notice of me, nor any of the other spectators scattered around the room’s edge.  I think those I am watching must find their world entirely contained in what they see in front of them.

I sidle along the wall, and he comes into view.  That’s him.  Four rows in, six tables down, facing me from the far side.  My sweet son.

Three days ago we traveled the breadth of the country, departing from our home in Portland, Oregon, by early morning light, changing planes in Chicago, then arriving in Philadelphia well into the evening.  We have come here so Blaine can compete in the Chess World Open, a tournament that attracts hundreds of chess players, from every continent, some among the best in the world.

When I look out across this room, I see that Blaine is in their midst.  At this moment, he has left me behind and is of their world.  His gaze is as intense, his movements as sure.  Though he has lost more games than he has won at this point in the tournament, he plays on, determined to do his best.  I can see the courage and strength in his face from here.

I don’t see my sob coming.  It nearly erupts, but I manage to choke it back, clamping it inside so it doesn’t crack the room’s spell.  My eyes are stinging with tears, and I have sagged into the wall.  This view, this place, this moment . . . they overwhelm me.

I would have thought this is the last place on earth we would ever be.

I am aware that over the past two days Blaine has become known to everyone here.  Not because of his chess prowess; his rating is rather modest among this group. Not because he is still a child – there are children even younger and smaller than Blaine competing with these adults.  It’s because of another kind of difference.

Even though Blaine is nearly 14 years old at this moment, he is closer to the size of a typical six year old.  The hole we found in his back when he was born, and the anomalies in his brain that accompanied it, have diminished his body.  He weighs only 55 pounds, and is not yet four feet tall.

I hear Blaine referred to by tournament officials, not by name, but as “the boy in the wheelchair.”  I can see it in the eyes and faces all around us.  These are not hostile expressions.  They are simply surprised.  Blaine is just so unexpected.

I have noticed that when we leave home, and move beyond the circle of people who know us, Blaine’s wheelchair puts him in a world alien to most people.  And because I am his mother, it carries me along to a different place as well.  It’s been a while since we were among so many strangers.  I had forgotten that when people first lay eyes on us, maybe they feel a little like aliens looking at earthlings for the first time.

I leave the room and walk directly to the bright glass doors at the end of a long dim hallway.  I step outside and now I am alone.  I let my tears flow, and begin to feel soothed.  Someone walks by, and sees that I am crying.  I nearly call out, wanting to explain my tears so they will not be misunderstood.  This is not sorrow running down my cheeks.  I am giving thanks.  These tears are blessing this moment, my life.  I wonder if the man walking by could possibly know what I mean when I say that?

If I could explain this moment, and this life, would I be understood?  When we invite others to look inside this experience – into the world where Blaine and I dwell – what do they see?  Can they get here from there?

Ever since I arrived in this strange and compelling world, I have been moved to try to understand it.  Why did this happen?  What does it mean?  Will Blaine and I be able to survive here?  How will I know what to do?

Although I am still searching for answers to most of these questions, as soon as Blaine was born, I knew there was no going back to where I came from.  Knowing what I know now, I would not return if I could.  This is where I belong.

Until my own son was born, I had no idea that children are born with gaping holes in their spines.  I had no idea that infants, who have lived only a few weeks, can be found to have leukemia, until my brother’s son was diagnosed when he was three months old.  I didn’t know that children who have not seen their second birthday can have terminal cancer, until Blaine shared a hospital room with a tiny, pale girl whose stomach, liver and intestines had been consumed by the disease.  I didn’t know that someone in the last stages of Alzheimer’s disease curls up in the fetal position and can’t move, until I spent the morning visiting a friend who was caring for her elderly mother so she could die at home.

I had no idea what amazing challenges children and families face, until I began facing them myself.  Learning these things changed me.  I can’t imagine not knowing them, and wonder how I knew what was real before I did.

I know parents who tell me they are glad their children have disabilities, and really mean it.  I am not one of them.  These parents tell me that from their experience, they have learned what matters in life, how to be patient, how to live in the present.  And although I have learned and changed immeasurably from having my son, it is too high a price to think his disability was the cost of my wisdom.  Blaine’s disability has caused him real suffering.  I can think of nothing, for example, that would be worth a child – eyes stricken with terror and panic – desperately gasping for breath while being weaned off a ventilator following surgery, or worth a mother helplessly watching her child endure it.  There is nothing worth the horror- and pain-filled screams of a tiny infant having cells of bone marrow withdrawn from his spinal cord through a large gauge needle, or worth his parents biting their thumbs to stop their own screams while listening from a nearby room.

So while we did not – and would not – choose this fate, we embrace it.  Blaine’s disability does not define him, and yet his spare and twisted body is part of who he is and what he knows.  Although I confess I have always preferred – no! insisted upon – viewing Blaine as a regular kid, one of the gang, the truth is his disability makes him different.  It makes me different.  It makes a difference.

I have tried to look this difference in the eye.  What are you?  I demand.  What is your business here?

Partly I search for meaning so I can face this life we lead.  I want to have the will, the courage, the strength that it takes to do this.  I don’t want to fail my son.  I don’t want to fail myself.

I also want to help people who are outside our world look in.  I have watched many people encounter Blaine and me over the past 14 years.  Some people stop stock still in the middle of the frozen food aisle in the supermarket and openly stare.  Others think I don’t notice when they quickly look away.

Sometimes when people see us I can tell they feel only pity.  There was the woman walking I overheard ask her companions as they walked by in the park one afternoon, “Did you see that pathetic little thing back there?”  My own curiosity made me turn to look, expecting to find a dead puppy.  But there was nothing to see but my joyously laughing child, wearing short leg braces, while his father was pushing him in a swing.

And there are others, like the woman in the parking lot at the neighborhood Safeway who, on the basis of watching me put Blaine in his wheelchair after unloading it from the back of the car, came over to tell me how much she admired me, what a brave little mother I was, what a wonderful person heading for heaven I was.

I try to find words that will help these people understand me and my life.  Sometimes I find them, but more often I don’t until several hours have passed and we have all gone home.

While I struggle to explain, searching for words that will convey what I want others to learn, Blaine goes about changing the world, simply showing people what they need to know.

One day when Blaine was just a few years old, we were strolling near Saturday Market in downtown Portland.  A dirty and bedraggled-looking street person staggered up to Blaine, stopped, pointed to him, and asked, “What’s wrong with him?”

I explained that nothing was wrong with him, but if he wanted to know why Blaine was in a wheelchair, it was because he was born with an incomplete spine and spinal cord.

When I finished speaking, the man grunted in reply.  “Hhhnnnn.  I guess he woulda been better off dead.”  At which point, Blaine reached out, took the man’s hand, and kissed it.

I was torn between feeling sorry for the guy, pitying his ignorance and lack of social graces, and wanting to slap him for saying something like that in front of my child, who heard every word.

As I watched Blaine kiss his hand, the man’s face softened, and he stared at Blaine in awe.  I wondered when this man had last been kissed.  I wondered when he had last received a kind and tender touch.  I wondered if anyone but Blaine would have given them to him.

As we continued on up the street, the man stood hollering after us.  “That’s a wonderful boy you have there,” he yelled. “Take good care of him.”

Part of taking good care of him has been believing that Blaine might live, that he could survive each day as it passed.  When Blaine was a few days old, I begged the social worker who visited my bedside to introduce me to a family whose baby had lived and grown, so that I could see with my own eyes that it was possible.

Part of taking good care of him has been believing in myself, and acknowledging my own survival and growth.  The first time I laid eyes on another child with spina bifida, when Blaine was a few weeks old, my heart choked on bitter tears.  She was six years old, and had just returned home from one of her first days of school.  Her mother helped her get out of her wheelchair, and Rachel dragged her body along the floor behind her.  All I could think was that she looked exactly like the litter of kittens our cat had when I was ten, the litter that got distemper.  And I remembered that we did the only thing that anyone I knew did to kittens with distemper back then.  We put them out of their misery.  As we rode home on the bus that afternoon, my arms wrapped a protective mantle around Blaine, and I promised him that he would not be like those kittens, because he would be able to walk, the doctors had said so.

Before two years had passed I came to realize that Blaine could only move by dragging his body on the floor just like Rachel.  By then I had forgotten about the kittens.  A few weeks after he got his first wheelchair when he was two, Blaine and I were shopping at the supermarket near our home, where we were nearly daily customers.  As we moved down the fruit and vegetable aisle, I became aware that people were staring at us.  “Oh, my God,” I immediately concluded, “I’ll bet the seat of my pants are split, or I sat in something disgusting-looking.”  Then a wave of astonished discovery hit me.  “Oh, my God,” I marveled. “They’re staring at Blaine’s wheelchair.  They’ve probably never seen one so tiny.”

I had completely forgotten that he had one.

Part of taking good care of Blaine has been not believing specialists when they wrote in their reports that Blaine was “developmentally delayed” and “mentally retarded.”  It has meant acknowledging he was the best reader in his class, it meant nominating him for the Talented and Gifted Program when he was in kindergarten, and it meant teaching him basic chess moves and letting him beat me every time we played when he was five.

And now we are here, at the premiere public chess event in the world.  A few months ago, Blaine competed in a statewide tournament in Oregon, and with a boy from Roseburg – whose mother had been a friend of mine when we both lived along a remote part of the South Umpqua River in southwest Oregon in grade school – became Oregon’s Eighth Grade Chess Champion.  A few weeks later, his father took him to the National Elementary Chess Championship in Chicago, where Blaine’s score ranked fourth in the nation.  A man who has a lot more money than Blaine and I heard of my son’s success, and wanted to make it possible for him to compete at this world class level.  A few weeks ago he came to our home and gave us a check that is paying for our entire trip.

I walk back into the room where Blaine’s game continues, and take my place against the wall.  As I stand here, watching Blaine play his heart out, witnessing his awe and delight as he collects autographs from the many Grandmasters who are here from all over the world, I know that our generous friend will never fully understand what he has done for Blaine and me.

Blaine’s joy is complete, and pure and simple – he dreamed of this, and now his dream has come true.  He is merely astonished at his luck, in meeting this man who has made his dream come to life.  The truth is, I never dared dream of this, but standing here, something is coming to life in me as well.  Not until this moment have I really grasped what I have learned, and what I have lived.  If we hadn’t come, I might never have known.

From this wall, I can see there is a story here.  It is Blaine’s, and it is mine.  And standing here, I understand that I must tell it.  What follows is what I know, and how I came to know it.