Breath & Shadow
A Journal of Disability Culture and Literature
Breath and Shadow
Volume 14 Issue 2
By Wendy Kennar
“How are you?”
I don’t like that question, because I don’t know how to answer it.
Do you mean how am I right now, this moment, when you’re asking? Do you mean in general, taking into account that I have a roof over my head and food in my refrigerator? Or, do you mean compared to the last time we spoke?
How am I?
My answer depends on how I want to think about my situation. The facts don’t change, but my reaction to them does. The facts: I’m forty years old, have been married for seventeen years, and am the mother of an eight-year-old son. I was an elementary school teacher for twelve years, and I left my career at my doctor’s advice to try and better manage my autoimmune disease. It’s called Undifferentiated Connective Tissue Disease. It’s rare. Medically speaking, I’ll tell you that it has overlapping symptoms of lupus, rheumatoid arthritis, and myositis. But your eyes would most likely glaze over because those terms probably don’t mean much to you. Don’t worry; I’m not insulted. I understand. They didn’t mean much to me either. I didn’t even know what an autoimmune disease was until I found out I had one. So instead, I’ll tell you that on a daily basis, I’m dealing with pain and fatigue in my legs, predominantly my left leg.
How am I?
My eight-year-old son and I just finished a twenty-minute game of handball. He serves harder and stronger than I do. He sets the rules (“yes babies,” “no friendships,” “no sticky fingers”). We played round after round, dealing with “liners,” “pops,” and the occasional “re-do.” And now you want to know how I am.
I am hurting. My left leg feels like it’s being twisted, the way you wring out a wet washcloth. I feel as if I’m wearing steel-toed boots that reach up to my knees instead of my soft and cushy Nikes.
I am upset. I didn’t stick to my original plan of limiting us to a ten-minute game. But Ryan asked so nicely, “Please Mommy. Can’t we play a little longer? Just try your best.” The same words I use with him all the time. Just try your best. So I did.
I am grateful. Ryan and I have a close relationship. For now, he enjoys playing with me. I’m grateful we live in a neighborhood where we can play outside on a regular basis. And I’m grateful that I’m upright, physically somewhat able to play with him.
I am sad. Sad that a twenty-minute game of handball can leave me feeling so exhausted, so defeated, so weak. I’m sad that something fun and pleasurable for Ryan leaves me in pain that will last the rest of the day. I’m sad that this has become my reality, and it most likely won’t ever change.
I am hesitant. I pause before even answering the question, because I don’t feel I have a right to complain. After all, I’m dealing with pain, not a death sentence. There are others facing worse situations
-- my former student who received a heart transplant, neighbors who lost their young daughter to leukemia. Who am I to complain that my legs hurt?
I am mad. I’m mad that I want to play with my son, and yet I feel like my body punishes me for it afterwards. I’m mad that more parents aren’t out playing with their kids.
I am obligated. I play with my son, because it’s what moms are supposed to do. It’s what my mom did for my sister and me. When my son’s friends aren’t home or aren’t available, when my husband is at work, I’m the default playmate.
I am disappointed. Ryan’s teacher isn’t doing for his class the things I used to do for my classes. He tells me about his day, as we hit the ball back and forth. He didn’t celebrate Read Across America Day by coming to school in his pajamas like my students used to. His teacher didn’t make his class quesadillas for Cinco de Mayo like I used to. And his teacher sometimes runs out of time for their weekly spelling test (something that never happened in Mrs. Kennar’s classroom).
I am conflicted. It would almost be easier if my physical situation was worse. If I relied on a cane or a walker, others would understand why I sometimes walk slowly. If it was worse and I needed an assistive device, I’d have my excuse not to play. I could blame it on something else. I wouldn’t feel compelled to push myself, to just “try my best.”
I am frustrated. I want to play without worrying that the ball will accidentally bump my leg. I’m frustrated that I have to keep watching the clock, to make sure I take one of my medications at the right time, the one that needs to be taken between meals. I’m frustrated that we can’t figure out a way to make the pain go away. Permanently.
I am scared. It’s possible that my condition will worsen someday. Ryan doesn’t remember the way I used to be. He doesn’t remember our walks to the Page Museum and LACMA, because now, those are places we have to drive to. I’m scared that someday I really won’t be able to play, and Ryan won’t remember these play sessions. So, while I can, I keep pushing myself, in hopes I can fill his memory bank up now, just in case.
How am I?
I could shrug my shoulders or just utter an “okay.” I could say, “Don’t ask.” Or I could point to my son. We’re back in the house, and after drinking some water, my son is at his desk, writing in his red weekly planner. Sometimes he writes the day’s activities in advance, sometimes he writes them after we’ve done them. Today he’s writing “play handball with Mommy.” I’m on the couch, taking off my shoes and socks, noticing the deep indentation my socks have made around my legs.
My son sits beside me and tells me we should rest. We decide to have a snack while we watch some YouTube videos.
“I’ll go upstairs and get the computer so you can rest your legs,” he offers.
“Thank you, sweet pea. I’ll get the snacks.”
We eat our chocolate ice cream and watch astronaut Chris Hadfield onboard the International Space Station demonstrate how to cut his nails, how to make a sandwich, and how to brush his teeth all without gravity.
I’m still hurting, and I feel completely worn out.
But after finishing his ice cream, my son just snuggled up close to me. He is happy.
I am content.
Wendy Kennar is a freelance writer who finds inspiration in her eight-year-old son and from her memories of her twelve-year teaching career. Her writing has appeared in several publications and anthologies, both in print and online. She prefers sunflowers to roses and thinks chocolate is okay at any meal. You can read more from Wendy at wendykennar.com.