I hate mom's yelling voice. Not because I hate the sound so much, although it is a horrible sound, but because of how much I like her talking voice. Her singing voice. Her whispers. Those three work well together. They seem connected, complimentary, like members of the same species. Then there is that other thing, that higher, off-key, nasal, hallowed out yowl, that extended bark that happens when she yells. It doesn't happen when she says something loudly. It doesn't happen when she has to shout information across the house. It happens with emotional charge. The sound changes under the pressure of stress and anger, like someone blowing way too hard into a trumpet.
In her singing voice, there is still “mom.”
In her whispers, “mom” in purest form.
Her yell? “Mom” is gone. The voice isn't even female.
“Okay!” I yell back. When I yell, I don't want to hear anything resembling that asexual, atonal, inhuman voice. I work to avoid it, I listen for it and keep an ear out for signs of it creeping in. Mom's yell might be like that because of me, because of all three of us. When kids fight and moms have to yell over and over again, against their wishes, for years on end, something inevitable and irreversible happens.
I don't know why she's yelling, though. Maybe dad said something mean to her as she was ascending the stairs. Maybe he said something about her butt. He likes to say things about her butt, and he really likes to hear her response. The meaner her response, the better. It's harmless, it's obvious he is just joking, I don't know why she gets so upset. Maybe because he's been doing it for so long. I think he's been doing it at least since I was born so that's fourteen years. His constant, smiling harassment almost definitely goes back further than that, probably back to when they first met. High school?
Maybe she wants fresh, new jokes.
She shouldn't be stressed by me, ten minutes is plenty of time for me. I took my bath thirty minutes ago (that's right, I take baths), my dress is laid out (that I bought with my own money, thank you very much), and my shoes, stockings, and legs are all laid out on the bed, ready.
Yes, my legs are on the bed, ready to be put on.
It's a big day. I've never worn a dress that I bought myself. I've never worn stockings before. I've never worn high heels outside of mom's closet. I've never been to a family reunion.
You're still hung up on the legs thing, aren't you?
I've told this story a hundred times to a hundred different people, one more won't kill me. There is a cancer called Osteosarcoma. It's bone cancer, and it tried to kill me, but it only got my legs. It got my left leg above the knee, which sucks, but I got to keep a little bit of the lower part of my right leg. That helps with mobility and my independence. I guess I'm grateful for that, for a little bit of good news among the many horrors. Having a little of my lower right leg allows me to wear a prosthetic with a hinge I can work. It makes walking without crutches or a cane a lot easier. It's a little something good. Someone ate most of my birthday cake and left me a tiny, mushed sliver.
I'll eat that sliver and smile.
Obviously, catastrophic bone cancer came as quite a shock to my parents, my brother, my sister, and the Horner family, in general. The doctors and therapists talked about this. They told us all about the different emotions we might experience while going through these trials. They told us all about the Kubler-Ross cycle of grief. It's a hypothesis from Dr. Elisabeth Kubler Ross, this cool doctor lady who studied grief, especially as it relates to dying. She found five major stops along the grieving path: denial, then anger, then bargaining, depression, and finally acceptance. Dr. Elisabeth's cycle was focused more on the grief surrounding death or impending death. My doctors told me I could have died, but the cycle isn't just for that. It can explain how people deal with any kind of loss... like the loss of both legs to a 10-year-old girl.
I think I skipped denial because I could feel the cancer in my legs. I could feel it eating away at me, and my legs ached more and more all the time. They hurt for awhile before I told anybody. I didn't tell mom or dad that part. They were too busy moving through their own cycles of grief. For the most part, they moved through in lock-step, going quickly through denial to anger, and then staying angry while moving through bargaining, depression, and even acceptance.
Anger never left them. There is a bitterness at the loss. I think deciding to have my legs amputated felt like defeat to them, like they'd let me down in some way. I feel the anger still. I see it when they look at my legs. I see it whenever they watch me crawl across the floor or hoist myself up onto the couch or into my bed. I feel it when I get into my wheelchair, and when I put on my other legs. I don't think that will ever disappear.
Maybe they haven't reached acceptance.
My brother, David, went out of his way to ignore me and not talk to me or look at me on the family hospital visits. He got stuck in the denial stage.
Near the end of my hospital stay after the final surgery, I told him it was okay, I wasn't offended.
“Don't be scared, you can't catch cancer.”
He left the room.
“Ashley!” my mother said, scolding me. She told me David was my brother and that all of these changes were hard on everybody, not just me.
So sorry to make things hard on everybody with my cancer, mom.
My sister, Sarah, took a different path. She wouldn't leave me alone, still won't. I think she is trying to keep me busy thinking about things and looking at things and talking about things so I can't ever have a moment to myself to get sad. She's ten. Maybe she's on to something. Maybe supreme distracted happiness is a good default.
Smiles do get old, though. Too many people smile at me when they notice my legs. The smiles are too big, and they go on for too long. A good smile is two or three seconds. You're supposed to smile, then you say hi or you shake hands, and then you stop smiling. But the smile cycle is different for me now.
First, people smile. Then their smile cracks when they notice I'm not just sitting down but that I am, in fact, a girl in a wheelchair. I think they then realize they've stopped smiling normally so they double down. They smile harder, bigger, and usually drop some loud, awkward greeting.
“Oh wow, hi... look at you! Such a... pretty girl.”
Ugh, stop it. I can see you flipping through your mental folders for human interactions to use on me. I can see you actively trying to avoid saying words like “special” and “interesting.”
And “brave.” Am I so brave? Am I so so so brave for existing in this wheelchair?
I can usually let them and myself off the hook by saying something about looking for my parents. I'm not even sure what I want them to say. I am different. Seeing me is different, it's not something people see every day. I get it. I guess I'd love for people to smile at me and say hello and then smile and say hello to the next person in their field of vision. I am still, I think, just a person.
After I recovered from the surgeries, they walked me through the different prosthetics.
It's okay, you can laugh at that, they did literally walk me through the prosthetics, and that joke makes me smile every single time. Even four years later. Tadaaa, humor.
Mom and dad hate that joke.
The legs I will be wearing today are made mostly of advanced plastics that I still don't understand. What I do understand is that they have a fixed, raised heel. They are meant for wearing shoes with a heel. I have another set of legs with flexible, jointed feet, and I have a set of blades. The blades creeped me out the most at first. They made me feel more machine, more cyborg than I wanted. But I found very quickly that they were by far the best for bounding around so the creepiness faded. Weirdly enough, the legs with the best resemblance to actual legs and feet are often the creepiest. It's like seeing a really good mannequin. The cheesy mannequins don't bother me. The mannequins without eyes, with vague features, don't make me feel like I'm being watched by something. But the more realistic ones follow me with their eyes. They look like they could come alive and murder me.
Is that a movie? There should be a horror movie about that.
The legs with raised heels were crafted by an artist, working together with an engineer to get as close to perfect skin tone and angles and shape as possible. They did get close, the legs are beautiful... until you put them on and look at them. Like, really look at them. Somehow, seeing them at the bottom of my body, seeing how real they look and knowing they aren't is more unsettling. On closer inspection you would notice some important giveaways. The toes aren't separated. I went from having no toes to having a webbed mass of toe-like structures. Also, there are no joints. The ankle doesn't move, the toes don't move, and the knee doesn't move.
But, when I cover them with my black, nylon stockings, I will have the most normal, beautiful, high-heel-wearing legs you've ever seen.
They also make me about three inches taller than my other legs. Which is pretty much the best thing ever.
“Five minutes, Ashley!”
Ah, that voice again.
My first new legs were made of wood. Wood, and a rubber foot that was bolted in place. Classy, very stylish for a ten-year-old, and yet I couldn't wait to get back to school and show my friends. I'd missed so many classes due to surgery and recovery I missed my friends, I missed schoolwork, I even missed my teacher, Mrs. Braddock. When I was in my wheelchair recovering from the last surgery, I found out Mrs. Braddock didn't miss me.
“A distraction?” I cried to my mom. Mrs. Braddock wanted to extend my leave of absence for the sake of class stability. She thought I would, in my new state, be a distraction to the class. She thought my reappearance in a wheelchair with scars and fake legs would be inappropriate, and potentially unsettling to some of the other children.
“Well, honey, she thinks the other kids might ask you a lot of questions and that they might make you feel uncomfortable.”
“I'm uncomfortable being out of school. I'm uncomfortable being away from my friends,” I yelled through my tears. “I don't care about answering questions!”
“Well, we understand how you feel,” my dad said, “but we're going to listen to your teacher and keep working with your tutor, just for a few more weeks.”
“Weeks? I've already missed weeks and weeks of school! They're going to hold me back a year.”
“They're not going to hold you back.”
“Yes they are!”
“Chloe!” dad yelled.
My dad yelled. Before the cancer, dad never yelled. After the cancer, he yelled a lot. Not just at me, but at anyone who did the wrong thing at the wrong time. He yelled at a man at the bank. He yelled at a policeman who gave him a ticket. Well, he didn't yell at the policeman, he yelled about him in the car as we drove away from where we got pulled over.
On a few nights, he yelled at mom. She yelled, too.
Dad's yell settled it, I didn't go back to school for another three weeks. By then I didn't need my wheelchair anymore so I guess they thought I would be less of a distraction. I didn't like that they thought that. I wanted to make a point. If they thought now, out of my wheelchair, that I wouldn't be as much of a distraction, then I would try my best to be more of one. I tried to talk to everyone, all the time, about any and every part of my story. I talked about cancer, about amputation, about the doctors and nurses I worked with, about the materials that went into my fake legs and how they felt and what it was like having half legs. I told Chris Hefter that it was hard to sit on the toilet with my fake legs. I told Gabe Whitfield I needed to be careful because I could develop sores on my nubs that might get infected if I wasn't careful about prosthetic placement and fit.
I told Jack and John, the Everett twins, that I could sometimes still feel my old legs. I told them I could feel my toes wiggling, that I got itchy calves and shins sometimes, even though I didn't have calves or shins.
Mrs. Braddock said that was inappropriate.
My dad agreed with her.
I gave up. I let them win. I didn't want to get held back or kicked out of school, so I stopped talking about my legs. I made it that thing that no one talks about, that inappropriate thing. I stopped pushing back so openly.
But I didn't stop pushing back altogether.
A wooden leg is not meant to be taken swimming. Wooden legs with metal bolts don't enjoy the simple pleasures of chlorine swimming pools or frog-filled creeks. But I liked both of those things, so I swam and I kicked and splashed and caught a healthy assortment of frogs. I did all the things, I just did them quietly. I asked my friends not to tell. They agreed, with the sharpened smiles that only shared secrets can bring.
I didn't tell my parents. I didn't have to, my right leg told them. It outed me loud and clear in gym class when, during a volleyball game, boys versus girls, I twisted and lunged for the ball to save our team a point. I twisted too quickly on my rusting, rotting leg and the entire gym was silenced by the deep crunch of wood splintering and the booms of me, and my various wooden appendages, hitting the floor. The broken leg detached from my half leg and clattered in two pieces on the hardwood. Jessie Taylor screamed. Then all of her friends screamed. A third grade teacher, Mr. Wells, rushed to help me but stopped when he knelt down and surveyed the damage. He didn't know whether to pick me up, or pick up my legs, or try to do both. When he picked up the broken right leg and the last fibers of wood gave way, the metal bolt and rubber foot fell to the floor. Another series of booms and clangs. Another series of screams.
“I'm... I'm so sorry, Ashley,” Mr. Wells said.
“It's okay,” I said, picking up my foot. “Can you get me my backpack?”
He brought me my backpack and asked if he could help.
“Do you need me to... carry you?”
He regretted the question immediately. I saw his face twinge just before I secured the leg and foot in my pack and threw it over my shoulders.
I splayed out on my belly. I'd done it at home thousands of times. There were times when I just didn't feel like balancing on the prosthetics and I needed a simpler way, my way, a way that didn't require any hardware. I crawled like a seal slipping along a snowy glacier. I'd reach my arms out, splay my fingers and slap my hands down on the floor, and then drag myself along my belly. I knew I could drag myself all the way back to my classroom and hoist myself up into my chair and continue with the rest of my day.
Mr. Wells followed me for a few slides, trying to offer, as quietly as he could, to pick me up and carry me to the office. He asked me if I wanted him to call mom or dad.
I did drag myself back to my class. About ten minutes later, mom showed up. She brought my wheelchair. I didn't want to fight anymore so I let her slide me into it and I let her push me out into the parking lot. I was fully capable of putting myself in the car but I didn't, I made her do that, too. For the rest of the evening I did what I felt they wanted. I let them do everything for me. Mom talked and talked on the way home. She asked me questions I didn't answer, and wouldn't stop saying how worried she was when she got the call. She mentioned the leg and the state of the bolt and wood, briefly. When I didn't answer that question, either, she stopped talking.
Three weeks later I got my first new pair of legs. I'd been awarded a scholarship, of sorts. Someone gave the hospital a lot of money and one of the areas they wanted the money spent was prosthetics, especially prosthetics for kids and teens. They told me these new legs were different, that they were more stable and they were made from materials that were, at the time, state of the art. And they were, they definitely were. They were some of the best legs I've ever worn.
And they were white.
Like, really white. Like bright, bright, copy paper white. White like piano keys. White like bone. Considering my parents didn't want to ever draw attention to my fake legs, I thought white was an interesting choice. Those legs could have been seen from space.
But they were waterproof.
They were even buoyant. When they'd inevitably pop off during an especially excited race in the pool, they would float right to the surface and bob there, to the delight of everyone watching.
And by delight I mean screamy terror.
But the legs I'm strapping on right now are not white. They are not wooden, or rubber, or bolted in any way. They are sleek. They are flesh-colored. They even have changes in skin tone, tiny painted on blood vessels, and painted toenails. Red toenails, red to match the high-heeled open-toe sandals I will wear with them. Red to match the red splashes in the mostly white sun dress I bought myself.
Now, looking at my ensemble, I don't want to wear stockings. I want to wear these. I want to show off my legs. I want people to see them and see me and ask me questions and be awkward and smile too long and laugh nervously. I want people to feel uncomfortable and then get over it. I want to stop hiding this, hiding me, just so other people can feel more comfortable.
I don't want to be appropriate.
My toenails are red and they look fabulous. My sandals are red and they look fabulous. My white dress with red swirls looks fabulous. My fingernails are red, and my lips are red, and the bow in my hair is red, and I look fabulous.
“You're not wearing that,” dad says.
I felt so good for a few moments. Looking into the mirror in my room, I felt good. Walking down the hallway to the top of the stairs, I felt good. I held the edge of my skirt with one hand and the stair railing with the other and for a second, for one second, I felt like a princess, or a supermodel, or royalty, or something. I felt like the queen, descending the stairs from her throne. I felt beautiful, and for a second, I was excited about how I looked, and excited about showing people.
“What?” I asked.
“Your skirt, it's cute, but, no, you can't wear that.”
Mom turned from her position by the front door. She'd been applying makeup at the mirror there but stopped and looked at us.
“You can't wear that, Ashley,” dad said, again.
“Why not?” I was starting to cry. I hadn't prepared myself for this, even after all these years. I'd stupidly forgotten my dad's quiet disgust for my legs, for me. I'd forgotten how embarrassed he was to be with me when people stared. I'd forgotten for five seconds how hard it must be to have a daughter like me, a daughter who offends people with her legs, with her body. With her life. I'd let myself think that these legs were a part of me, that they were my normal. I'd forgotten to think of the poor poor world and how hard it must be to see someone like me in their very normal, very whole, very perfect worlds.
“I am wearing this,” I said.
“You're not, please go find something else to wear.”
“I am wearing this!”
“Ashley, it's not...”
“It's not, what, exactly? It's not what, dad?”
Please don't say it, dad, please don't say it. Please, after all these years and all of those other people saying it again and again, please don't. Please.
Today is the day. There are days that pass with little shifting from the days before. I think most days are like that, somewhat indistinguishable from each other. But then there are those other days, the days where things don't go as planned and where things don't follow the normal trails.
“It's... inappropriate? What is inappropriate about it? Is it inappropriate because I'm in it?”
“Ashley,” mom says, trying to douse what she sees burning.
“Is it too short? Too white? Is the dress to pretty for someone like me, dad?”
“No, of course not. It's just...”
He knew. He knew right in that moment he was wrong. He stopped himself from saying whatever stupid, insensitive thing he was going to say and instead he said nothing. He let my words crash over him and wash him out to sea. He let the waves of my voice toss him and churn him and grind him against the reef below. All those years of pushing me down, of shutting me up, of telling me I was hard for people to look at and unsettling for people to have to deal with, all those sharp, prickly years appeared in a single moment and he let me thrash his helpless body on their jagged edges.
“It's just... inappropriate. Yeah, I know, you've told me. Showing my legs is so inappropriate. I'm so sorry to bother you with them... with me. See these legs, dad? Do you see them? They're me, they're a part of me. I'm sorry if you hate them. I'm sorry if seeing them makes you feel bad. But they're me. They're made of plastic and someone painted the toenails on and they don't have any joints but they're me. I'm the one walking around on them. I'm the one people stare at, the one people whisper about. I'm the one who will never be normal again. But I don't care anymore. I bought this dress and I love this dress and I'm wearing this dress. I'm wearing it with these legs, my legs. If you don't want people to see me in this dress... if you don't want people to see my legs, then you don't want them to see me at all because I haven't felt this good about myself in a long time.”
Mom was crying. Dad wouldn't look at me and wouldn't speak. David and Sarah were standing in the doorway. They'd been waiting in the car.
They were smiling.
I wiped my face, knowing I probably cried my make-up all over the place, but I didn't care. I let my hand take the railing again and I made my way down the stairs and out the door. Sarah and David followed me and when they started laughing and congratulating me way too loudly, I didn't stop them.
We drove to the reunion in silence. Once there, we each found our own people, the kids going with cousins and mom and dad finding their separate ways to their favorite uncles and aunts. I spent most of the day sharing all of the details about my awesome new legs. When I wasn't doing that I was dancing. The only thing I didn't do was hide myself. I promised myself I would never do that again. Hiding myself wasn't right. It was a lie. Pretending I hadn't lost both my legs was stupid. Assuming people wouldn't be able to cope with seeing me with prosthetic legs was stupid. I wouldn't do that anymore. I wouldn't let people tell me what was okay or not okay.
That would be inappropriate.