My Old Girl
By Sue Cowing
©copyright 1993 by Sue Cowing
For Gene and me, E.T. was a horror movie. Merrily had seen the ads and previews, insisted on going. “There’s something I want to see.” We feared the worst but agreed to take her. Were we getting braver or more resigned? When the little alien first waddled out of the shed into full view, though the boy who discovered him was speechless, Mer whooped with the delight and jumped up and down on her seat.
"I knew it, I KNEW it,” she squealed in her duck voice.
“E. T.’s a progerian!”
We got her to sit back down, but her giggles kept burbling out.
“Look at his big eyes and shiny skin. See the way he walks? I knew it!”
When it came to the part where E.T. calls home and doesn’t appear to get any answer, and the plant wilts and E.T. and his Earth friend are getting weaker every day, Gene and I put our arms around Mer behind her back on the seat, but we were really reaching for each other, trying to hold on. Our faces were still swollen when the movie ended, even though we had sat all through the credits. Merrily looked up at us approvingly: “You really liked it!”
I nodded dumbly. I had begun to feel like the straight man in her serious comedy. Then I noticed. “Merrily, where’s your wig?” All that covered her head were a few patches of white down like milkweed fluff, barely noticeable among the brown pigment splotches and prominent blue veins. She reached in her pocket and pulled it out just far enough to show a few curls. How obviously fake they looked when she wasn’t wearing them. I could have said “Don’t you want to put it on?” But I knew the answer, even though this was a first.
“Sure you want to do this, Honey?”
It was only a matter of minutes before people’s eyes adjusted to the dusty daylight of the street and they began to stare, or tried not to. A girl of about four glanced our way and cried out,“Look, there’s another one.”
Merrily called back,“That’s right!”
Some boys, daring each other, ran up behind us. One stage-whispered “Call home,” then led the rest in a chorus “Where’s your planet?”Gene wheeled and grabbed the ringleader by his jacket collar. "Wherever YOUR home is, you’d better get straight to it.”
As he turned back toward us, the boy muttered,“Your daughter’s a freak, Mister.Why don’t you keep her home?"
I knew Merrily. She would never wear her wig again.
I felt like I was a bird watching all this from a mile up. People had to start where we were years before, and they had so much less at stake.
Many times I’ve wished Gene had been with me that day nine years ago. But how could I have known? What’s the worst that you could expect to hear when you take your toddler for her first visit to the dentist? Mother, you’re going to have to stop letting her go to sleep with a bottle, the milk-sugar is rotting her baby teeth? Or, that fall she had may have injured her permanent tooth buds, so let’s take an X-ray?
But Merrily was nineteen months old and hadn’t cut any teeth, and we wanted to ask the doctor about that. What he told me was that Merrily would never grow more than about four feet high, that she would age at six to ten times the normal rate and lose all her hair, including her brows and lashes, that she would skip the reproductive phase altogether and die sometime in her teens, probably of a heart attack or stroke! She didn’t have any baby teeth because she didn’t have time—her permanent teeth were getting ready to come in. The good news was that her intelligence would not be affected.
I couldn’t believe any of it. I remembered seeing one of those little old children, a wizened man of seven years, staring out from the cover of a tabloid at the checkout stand. Some group was treating him to a visit to Disneyland, and he looked even freakier in his Mouseketeers hat.
“How can you tell all that just from her teeth? How can you just hand out a sentence like that?”
Merrily began to cry and I held her close. Already she seemed smaller. The dentist motioned me out of the examining room and into his office. I attacked.
“You haven’t run any tests.You’re not even a doctor.”
“I am a doctor, and there aren’t any tests.’
“Then how do you know?”
“We can only diagnose by the presenting symptoms, by appearances.”
“Well look at her, she’s healthy and beautiful.”
“So far, but it‘s still early." He clipped Merrily’s X-rays up on the screen and pointed to large, jagged teeth-forms just under the gum surface. "This is a classic case of progeria. Some dentists might not know what they had here, but by chance I observed a progeria patient in graduate school. It’s very rare.”
“And on the basis of that one case—“
“You could practically swap her X-rays for his. See here’s what normal dentition looks like for a child her age.” He clipped on another image of little baby teeth like kernels of bantam corn, and orderly canine and molar buds waiting patiently below the gum line.“Teeth like Merrily’s here you never see.”
“What is the treatment for this. . .progeria?”
“There isn’t any.”
“I see, but you wanted me to know as soon as possible.”
“Mrs. Sanders . . .I urge you to see your pediatrician, tell him what I’ve told you. No doubt he’ll want to confirm the diagnosis with an expert in the field. There are some things that can be done to manage the condition, of course. For instance, we’ll eventually want to pull some of these molars. Her little jaw will never get big enough to accommodate them, and we don’t want her teeth sticking out in all directions.
By the time I got out to the car, I wasn’t angry anymore. I just felt fragile and limp. Merrily, exhausted too from all the excitement, fell asleep the minute I got her fastened into her car seat. Like a monkey mother I examined her. I didn’t really know what to look for, and I didn’t want to know. Just wanted proof of health, and it was there. Her beautiful complexion a little chapped on the cheeks from the wind. Her hand, when I picked it up, plump and stubby and warm, her fine yellow hair misted with sweat behind the ears from the effort of crying. Lovely. Yet I knew it was true.
I watched another woman unlock her car door, juggling packages and a fussing child, and wondered, in a sort of unreal way, if it would be possible for me to lift the key to the ignition, drive home, put Merrily down for her nap, then walk into the living room and tell Gene she was going to die. I started the car, wishing we lived miles away, missed the turn into our road and drove for miles anyway.
Gene listened calmly, stroked my hand. “You’re pretty shaken up about this, aren’t you Honey?
“Not really. I don’t believe it. Don’t you see Diane? The fact that the guy once saw a case of this rare disease has a lot to do with his diagnosis. You see what you’re looking for.”
“Gene. . .”
“I mean it. What’s he got to go on? A few weird-looking teeth on an X-ray? Dentistry is a very boring job. He wants to believe this because it’s interesting. Makes up for years of cracked fillings and bad breath.”
“I wish you could have been there, Gene,”
“Believe me, so do I.”
“What are we going to do?”
“For openers, get a new dentist.”
“Uh-huh. Kill the messenger.”
“Tell you what, Diane. Go ahead and make an appointment with the pediatrician. I’m sure he’ll have a much less grisly explanation about the teeth. The only thing that’s going to reassure you is a second opinion. In the meantime, don’t assume the worst.”
He turned without answering
“Come with me this time?”
“Uh. . .sure.” He rummaged in his shirt pocket for the cigarettes he hadn’t carried there in a year.
I can’t believe the cheeriness of office nurses, how it increases the more worried you are. And we’d both been plenty worried—me out loud all day, Gene at night, sweating, gnashing, getting up several times to go to the john. Because from the day I brought her home from the dentist, we began to notice things. Her appetite wasn’t all that good, her knees seemed stiff, the forehead veins a bit to obvious. And when we brought her in that morning, the nurse tried not to show surprise that she hadn’t grown or gained in four months. There was a sort of electric interest in the office that no amount of professional manner could disguise.
At the doctor’s request, we had brought a copy of the dental X-rays. He asked all sorts of questions back to pregnancy, asked permission to take pictures, having us hold her in different positions, examined her skin, and measured between her eyes. While this was going on, I began to see Mer as a stranger would, as a specimen, a textbook case. I made the doctor promise me the pictures would never be published. “Certainly not without your permission,” he agreed. Then he had me dress her, gave her a hug, and sent her out to the toy room with the nurse.
“I’ll get these off to the Mayo Clinic. You’ll know as soon as I know. But I have to say, I think it’s pretty clear. It’s probably a good sign that she has appeared normal up to now, though.
“Doctor, what’s the longest anybody ever lived with this?”
“The oldest I’ve heard of was fifteen, but I don’t really know. Let’s save that question until we hear from the clinic. I’d really like to be wrong.”
The confirmation came in a week. A geneticist with a precise, accented voice called two days later to ask if he could take a history. Geneticist? Was this hereditary then? He said they didn’t know, were trying to find out, but with so few cases. . .We said yes to the history. But no names, no more pictures. Gene looked at me when I hung up. “My God, you mean this could be our fault?”
I was already so full of regret that that particular dread couldn’t reach me. Why hadn’t I nursed her? Seemed like too awkward a thing to do at the time. I told myself I wasn’t the type. Couldn’t see myself remaining calm in public while my little animal, barely disguised by a scarf or T-shirt, sucked and fondled my breast. Truth was, I didn’t feel capable of the role, made uncomfortable jokes about Earth Mothers. Not that mother's milk could have prevented this, but still. . .
From the time Merrily came home as a newborn, Gene had taken responsibility for her night-time bath, so I always had a little time to read or relax then. As soon as she could laugh, they’d played games together, and far from hating to be bathed, she never wanted to get out. He’d bring her to me still a little damp in her PJs, her hair combed into a ducktail and a big smile on her face, and off we’d go to her room. The night after the geneticist called, only one of them came out smiling. When I got her down to sleep, Gene motioned me to the bathroom and brought out Merrily’s hairbrush. It was full.
“This is all from tonight, Di. I. . .I’ve been cleaning out the brush every night, kind of keeping track. . .”
I wanted us to hold each other, but he wasn’t having that. He went out into the living room and pretended to read the paper. Then he leaned back with the page over his face, sobbing noiselessly. Little jerks. I waited, with the brush in my hand, absently pulling out clumps of hair and winding them around my index finger. Then he started throwing things: the paper first, then the cushion, but he needing something hard. He picked up the dictionary. “Progeria. . . .progeria. It isn’t even in here!” The dictionary landed open but twisted on the carpet. Silence. After a few minutes, he suddenly cried out, “Oh Diane, why is this happening to me?”
“It isn’t, Gene.”
He was stunned. “God. You’re right, You and I are going to live.” We reached for each other.
I have to hand it to Gene. Once he gets something clear, he can go straight on from there. That very night, he drove to the public library, Xeroxed all the magazine articles on progeria he could find, and brought them home for us to read. Most were human-interest stories about how the victims and their families coped, and there were lots of discrepancies in medical facts.
So the following week Gene made a trip to the medical records library in Milwaukee, and wrote to the Mayo doctor with a list of questions. I never knew when he was going to read to me some new fact he’d discovered, usually without preliminary conversation. “Symptoms can appear any time from prenatal period to two years, so Merrily was late,” he’d call as he rushed out of the bathroom getting ready for work, “that’s good, that’s good.” Or “Arthritis and osteoporosis can be alleviated with good nutrition and exercise, just as in the normally aging individual." Di, do you think we’re giving her enough calcium?”
I couldn’t believe his upbeat tone. I was reading the Xeroxes too, but they headed me in the opposite direction. The more I could see of what the future held for Mer, the more I wanted us to go away and live somewhere, just the three of us, for as long as she lasted. Somewhere out in the country with no mirrors and no visitors. We’d tutor her at home and play with her. It’d be a little Eden, no more than she deserved. Otherwise I could only imagine suffering for her, and cruel treatment.
The responses of these families in the magazines seemed pretty hard to believe. Parents and siblings all feel sad that this great kid isn’t going to be with them for very long—birthdays are especially hard. Sure they get taunts and rude remarks from strangers, even adults, but they realize most people just don’t understand. Isn’t there any kid with progeria who’s also a brat, whose brothers and sisters feel he’s getting entirely too much of the family’s energy? Aren’t there marriages that are destroyed? Oh yes, there was one, but of course the wife took custody and is carrying on beautifully without the wimp. Why no stories about the kid dying?
These mothers. I didn’t want to doubt them when they said things like they just take one day at a time or they’ve learned so much from their child’s affliction. Even the mother who said “I don’t think scientists will ever come up with an anti-aging agent, because then none of us would have to grow old, and that isn’t part of God’s plan.” I believed they believed these things, and that’s why I despaired. I wanted to tell God he picked the wrong woman. I’m not cut out to be the mother of a progerian child. There was no way I could be strong enough. Dead batteries and burnt dinners are about my crisis level. I lacked faith, patience, courage, simple-mindedness—everything it would take to get through this.
An emotional support network? My friend Maria said “Will you be putting her in a home?” My mother-in-law complained: “I wanted a real granddaughter—you know. . .ribbons, ballet lessons. . .” She and Merrily now both have arthritis. Dad listened to the explanation of Mer’s condition and her future and said, “You mean the little lady’s a wind egg.” Other people quizzed us closely, trying to find the clue to explain why it happened to our family and, of course, couldn't happen to them. It really is awful news, and I guess people have to protect themselves.
My mother, when she’d had about a day to think it over, drove down unannounced from Sauk City.
“Yoo-hoo. Diane, come help me with these.” She was unloading cardboard cartons from the back of their station wagon.
“Mom. What's all this?”
“I’ll explain in a minute.” A minute was when we had brought all the cartons into the house. Then she went back to the car to get a book from the front seat, a pulp paperback with a shiny yellow cover.
“Dear, I know you think I place too much stock in vitamins. . .”
Literally, I thought.
“. . .but for Merrily’s sake I want you to forget that and read this book from cover to cover. I think you’ll agree that generous amounts of Vitamin E and zinc are just the thing she needs.” (Mother resisted the term mega-dose like it was an accusation). I peeked inside one of the cartons. Dozens of bottles full of rubbery capsules. If I didn’t do this, which was probably, and Merrily got worse, it wouldn’t be Mom’s fault.
Through all those first blurry years, I would suddenly catch sight of Merrily sleeping or playing with her blocks and realize that we were so busy trying to deal and not deal with our bad fortune that no one was being with her, not really. She looked increasingly odd but didn’t know it yet, though she was annoyed at the inconvenience of being small. Then we read her “Thumbelina,” and she asked for it again and again. Her lashes grew scanty and her pale blond hair was almost gone. She loved “dressing up” in the wigs, though.
One day Gene brought home an article that had just been published about the oldest living progerian. “He’s twenty-eight, and in spite of weak joints and high blood pressure, he graduated from high school with a B average, and now works part-time in an office. He has lots of friends who come over on weekends to listen to his rock tapes and help him with chores. He even drives a special car,” Gene marveled. What struck us most in the article, though, was that the boy didn’t even realize what he had until he was about twelve, didn’t know he would die young until he was nineteen and went on his own to an expert. That was our program! We’d tell Merrily she was different, that she would always be small and frail. But we wouldn’t tell her she was going to die.
I kept seeing Merrily as some other living creature, one scheduled to pass through the world at a different rate from the rest of us. A butterfly, whose existence was one day, sort of a god in reverse. Her back began to hunch and her neck had little fat in it, just skin-folds and ropy veins. I wanted to say wait for me, my little turtle.
After the E.T. movie, our lives changed very quickly. The wigs went into the closet and stayed there. Mer just said, “If I’m an alien, I’m proud of it.” I know she dreaded the reactions she got from strangers, but she wouldn’t avoid them. She hurled questions at us all day then. “Am I a freak? Why didn’t you tell me I was a freak? Does this explain everything? All my colds? Why I keep breaking my arm? Will anybody love me?” They were accusations, but she wouldn’t accept reassurance. She studied the mirror in her room for hours, wouldn’t let us in. If only she would cry.
Her classmates were baffled at first by her new relentlessness, then fascinated. We had a note from the principal saying she was being “very difficult” in class. One neighbor child confided to me, “Mer’s kind of neat. Nobody can push her around.”
At home, she wasn’t aggressive after a while, just very, very quiet. She abandoned the mirror and concentrated on a new obsession: fossils. She had seen a science special on them and then taken a field trip with her class. By agreement with the teacher, the “rock doctor” had spent a lot of extra time with her, following up on the only interest she had shown in anything for months. He gave her some specimens, duplicates from the university collection, and some books to read. They should have been over her head, but she was ready.
Merrily made drawings of the specimens and illustrations reconstructing their habitats. One of the specimens was an intricate petrified trilobite that looked like a cookie press. She carried it as a pocket stone. One night when I stopped in to say goodnight (we had by then stopped telling her when it was time to go to bed), she pointed to a time-line of fossils she had made on shelf paper and tacked clear around the room.
“Mom, this melanopsis is really just a snail, but look how old it is, eighty million years! And there are still snails in the world. Not this snail, but snails. Think of something that old that you can still see around.”
Gene was already drifting off when I climbed into bed. “Gene, that girl knows things we don’t know.”
He shifted to face me and propped the pillow under his elbow. “Well, that’s only natural, honey. She’s a lot older than we are.”
I threw my pillow at him. It felt good to laugh.
A few nights later Mer came into the living room while we were watching the news, watched a few minutes, then got up and turned the set off. “We need to talk about something.”
“Something happen at school?”
“No, not that. . .I’m going to die. You two know it, don’t you?”
“Yes,” I answered, finally. Gene just stared at her. Then, stupidly, I asked her
“I don’t know, but I’ve been reading up you know? I guess I understand why you didn’t tell me.”
“Are you angry, Mer? Or do you wish you still didn’t know?”
She sighed, unmistakably the sigh of an old woman. “Neither. Even if I live long enough, I won’t get married,
“It’s not impossible.”
“But I couldn’t have babies.”
That was too much for Gene, who began to cry. Merrily went over quietly and put her arm around him. I cried too at that, but also smiled a little, thinking, “the child is father to the man.” And to me too. How could she be accepting this so well, be so forgiving and peaceful?
For her birthday dinner the next night we went to a neighborhood coffee shop where they were used to us and would bring Merrily a booster seat without being asked. But a new waitress was on that night. She dropped her order pad. She opened her mouth several times but no words came out. She looked over her shoulder for help and nobody came. Finally, as though we hadn’t seen any of this, she blurted out: “Hi, My name is Sharon, and I’ll be your waitress tonight.”
Almost without a pause, Mer piped up in her croaky voice, “Hi. My name is Merrily, and I’m going to die soon. If I can take it, you can.”
None of us could say anything. Sharon went pale and ran into the kitchen.
Merrily calmly sipped her water. “Guess she couldn’t take it.” Another pause, and then we all three began to laugh. A little at first, and then a lot, then shrieking. We’d subside, and then Mer would reach for her water glass and we’d remember the wicked words again and shriek. We got a different waitress. And when they brought in the cake with the twelve candles, we didn’t feel our usual dread, could sing “Happy Birthday” without the anchor of regret.
That evening, I went to Mer’s room and stood in the doorway. She turned from her desk to face me,
“Can you take it, Merrily?”
She pulled her trilobite from her pocket, shuffled over to the bed and sat softly down. I joined her.
“Know what? I’m going to live longer than anybody like me, I’m going to set a record.”
“I’m so glad.”
She turned the fossil over in her hand
“I wish I had a shell that lasts.You could keep me on a shelf in the kitchen then, so I’d sort of always be around, listening.”
“Honey, we’d really like that, too.”
“Mom? I’ll never be pretty will I?”
Oh God. “No, Mer.”
“I wanted to be pretty so much.” Tears spilled out of her lashless eyes. She reached for me and began to sob, kept changing her hold, cried until my blouse was soaked. Finally she subsided into little shudders, with islands of peaceful quiet in between.
I cried some too, at first, out of relief, but then I just held her, rocked her, stroked her small bony back. Being with her there, that moment, it seemed to me for the first time that there was enough time. I thought suddenly of something I had read once, that it almost never snows at the North Pole. It’s just too cold. Such a vast stillness.
from Negative Capability, 1993