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:
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.