Note: The scenes following the restaurant are all based off of my actual experiences working with caregivers and coping with my Cerebral Palsy and the effects of my PNES paralysis episodes that come with very little to no warning. The caregiver mentioned in this post represents all the caregivers I have on my care staff, but her name is fictitious. Also note that the format in which this post has been placed is due to the blogging platform used.
You're months away from your twentieth birthday. Last night you were chilling with your friends at their parents' pool, having a blast, making some incredible memories. But you excuse yourself early because you've got a babysitting obligation later. The last person you see before you get in your car is your significant other and you wrap your arms around them, hold their face as you give them a kiss goodbye. Your parents call and say they wanna meet you for dinner so you decide to just run home really quick and throw something different on. Fifteen minutes flat and you're out the door again, keys in hand and get on the road to the restaurant. You check your appearance in the mirror one last time, think about just throwing your hair in a sloppy bun and when you step into the parking lot, you discover how much you love the fact that your dress is flowing and free. You skip a minute up the sidewalk, hold the door for someone in a wheelchair and follow behind the person accompanying them. You scoot by them when you find your parents' reserved table and kiss their cheeks. You pull out your chair, take a sip of water and get talking about finals and your first year of college up in the dorms. A basket of bread is presented and within five seconds you grab a piece, break it and butter it.
You hurry to the restroom briefly, and when you're finished washing your hands, absentmindedly adjust your dress and scratch an itch on your neck. As you leave the woman you assisted in a wheelchair comes in and another woman goes in after her. You exchange a brief smile. Your food comes and you cut your steak into pieces before eating it, choose to take a swig of Pepsi so you slip the paper off the top of it and twirl the straw in the ice for a second. Your legs are crossed but you switch to the other leg and wiggle your toes under the table. Life is great. A secure job, it's summer, passed the exams, got a boyfriend, excelling in your summer volleyball tournaments.
Your arms are tired from lifting the children today, carrying them on your hip. So you hop onto the couch, grab a novel and start reading where you left off. After a while, you take a shower and in fifteen minutes you're dressed in a towel, bobbing your head to the music in your headphones as you brush your teeth. You shave your legs and dry them off, running to your room to get in your pajamas. When you're all set, you shout goodnight down the hall and get under the covers. You turn out the lamp. Tomorrow you have a tournament and you're planning to get up early for a morning run.
Morning comes.
Someone turns on the lamp. As you wake up, you see your mother getting clothes from your closet. "How about this today, honey? It's chilly out."
"Okay," you reply groggily. She reaches for your arm. You give it and she pulls you upright. From somewhere inside you, you say a thank you, because you'd be lying flat still if she hadn't given a hand. She lays the outfit beside you. "Joanne will be here any minute," mom informs you. You nod. And wait. You wanna brush your hair real quick. Where's the brush? By the vanity. On the other side of the room. Oh. Sigh. You fall onto your side and wiggle your body onto the floor. You're crawling across your rug. You lift up to high-keeling and grab the brush. You scurry like a desert dragon back to the bed and claw your way back to sitting on the edge. You've broken a sweat. You feel like crying, you're body's so warm and tired.
"Morning, sunshine," a woman sings coming into your room. "How was your night yesterday?"
For a second you think of saying, "Oh, you know... Just went swimming, out to dinner, babysitting, whatever." But instead you say, "Went to the pool, chilled out, went to dinner with mom and dad, hung out with a friend's niece and nephew, hung out with my friend [insert guy's name here]. It was fun."
"How'd it go... The dinner?"
"I ate some grilled cheese. Mom fed it to me." Joanne's brow knits.
"Was it good?"
"Yeah. Hey, listen, we gotta come up with a system for public stalls. I can barely fit my wheelchair in most, let alone a caregiver, too."
"Let me get your chair. A couple minutes later and she's bringing a wheelchair into your bedroom and lifts you into it. Wrapped in your robe, you wait as she sets up the shower seat. She steadies you as you step into the shower and take a seat. After testing the water, Joanne begins to bathe you as you brainstorm solutions for the stalls.
"Please wash under my arm again," you ask.
"Which one?"
"The left." In your head, you get lost in your thoughts about your pursued major. Dietetics. In the corner of your eye, you see Joanne kneeling beside you as she rinses your hair of shampoo. A gratitude for this woman swells up so big in your chest you feel like crying again, not from exhaustion, but liberation.
Turning off the water, she wraps a towel around you and gets you back into your bedroom. She handles the shaver for you as you exchange jokes. You lift your arms and she shaves under them too, as you stare straight ahead at the medical book on your desk about Obstetrics and Gynecology. Your dream career is staring you in the face as she dries your arms, clips your nails and then dresses you in your outfit for the day.
You start to fall backward; you're too tired to remain sitting independently, so Joanne climbs up behind you and you lean against her lap. "How do want your hair today?" A huge smile creeps across your face.
"Usual bun." She chuckles.
"Braided maybe?"
"Yeah, why not?" Thirty minutes have passed and she lifts your mirror to your face. "Fantastic! Just what I saw in my head!" She laughs.
"You mean I got it?"
You feel like leaping. "Perfectly." You both start cheering, and stifle your excitement at the remembrance that your parents are still resting. But you feel so liberated - your hair's the way you want it. And it makes you so happy.
Joanne holds onto you as you walk to your power wheelchair. "Breakfast time," you say, cheerfully. When you're seated in the chair, Joanne adjusts your dress, and places your feet on the plates, strapping them down. She follows you into the kitchen. She hands you the items, you bring them to the table and she watches and assists you. You break two eggs, add some milk and stir as she gets you a glass of water.
You wait by the table as she gets the eggs cooked and when it's placed in front of you, a tsunami builds inside of you. Ignoring the shakiness in your hand, you try to stab the eggs on your plate, but you're quaking so hard they fall. You suddenly can't move. "Will you scratch my elbow, please?" is the last thing you're able to verbalize. Your head and limbs are dead weight and your neck lets your head droop down. A caring hand pushes your forehead against your headrest. She stands, pulls out some medical gloves from your bag and with one arm across the back of your wheelchair, she proceeds to lift the fork to your mouth with the other.
Unable to speak or move, it becomes a game of charades. She's looking into your eyes, you're looking into hers. She reads your facial expressions and your sounds like deciphering code and pulls up an iPad app. She puts it in front of you and puts your finger on the screen and an electronic voice says, "More, please, thank you."
She periodically catches food that drops, wipes your mouth and you guys are so good together that you can crack a joke with your eyes and she'll burst into laughter. Dad comes in the kitchen, opens a cabinet, gets his pills, takes them with some water, greets the caregiver and goes back to sleep. Mom gets up as Joanne begins clearing the table and goes over things with her briefly.
Joanne turns to you, holds your head in place and walks with you to the bathroom. Brushing your teeth now, she asks, "Like, how far back? Am I pushing too hard. Oh my God, you gagged! Can you breathe?" You're moaning. Finally she gets what you're staring at the sink for and holds a cup for you to spit in. You click your tongue and she resumes the brushing. "Dude, my résumé though... I'll be so experienced after this!" Haha, okay, taken as compliment. Funny. To the stairs now. "That was a short episode," she congratulates. She ties your shoes, holds you as you walk like a soldier down the steps and out the door.
"Hi world," you greet the morning. You feel like running.
"Look how well you're walking today," Joanne points out.
At the bookstore, your body decides to freeze again, but Joanne's hand is right on yours, and you know everything's okay. "I'd like to go to the wash room," your computer says. "Ready? On three. One, two, three." There's a slight strain in Joanne's voice on three as she lifts your body to standing. From there she's lowering your pants and steadies you on the toilet. Looking away, she stays quiet. You can't stop thinking about your next college course coming up in July. But she'll be there with you, so you smile. You click your tongue and she lifts you. She leans you into her as she helps you clean up. You suddenly lose balance and collapse. Her shout is mixed with nervous laughter and all you can do is laugh. Your heart is sobbing, but you're laughing. You're lying half-naked on the floor of a public restroom stall, but Joanne's there... And everything will be okay. "Oh Lord! Are you... Please be okay. Are you okay?" She picks you up. You give a half smile. "You're okay. Okay, okay, oh goodness, we're okay." She's wearing the last pair of medical gloves and while she finishes you make a mental note to pick some more up at the store soon. She sits you back down. "Shhh! There's someone in here! Did she here a bang? She lives, I swear! I freaking dropped you."
You press SPEAK on your computer and the electronic voice says, "Clean up on aisle four."
"Don't make me laugh about this. Seriously. This can't be funny." Your eyes sparkle.
"But it was. You know it." Shared snicker. You're too weak right now to stay upright, so she secures you in a harness. "Please center my head in the headrest," says your computer, and her gloved hands do as you ask. She tests the water at the sink and when it's okay, she brings your hands to the faucet. There's something special about seeing your hands in her gloved palms. A bond like none other.
You've gone to this store so much, Joanne now knows exactly what sections you go to and for what, and you buzz like bees, bouncing between the classics to medical education to economics to historic fiction to presidential biographies and books in science, poetry and Emerson essays. By the time you get a table at the café, you've decided to read a medical dictionary and sip on a mocha frapuccino. Joanne graciously holds the straw to your lips and turns the pages of the dictionary for you when you click your tongue. You begin staring intently at your screen. "What're you thinking?" Joanne asks.
"I would like to... Go to the pregnancy section." She nods, picking up everything. She resembles what you picture Mackelmore looks like after a thrift store shopping spree. You have a moment of wanting that to be your next outing. Priceless. Oh gosh, yes!
"Let's do it." What is she - telepathic? Oh, wait, she's talking about the book aisle, you knew that. You choose not to tell her she looks like Mackelmore; she'd legit break out in dance. And it's hard to hide in here. Who are you kidding? You'd join her. She'd drag you to the front and y'all would start a flash mob. Sweet.
She kneels and runs her hand along each book in each shelf as you say "warmer" or "up/down", "colder". "Stop." You click your tongue. She pulls out the book you have on your desk at home. Suddenly an expression she's never seen before pulls your face downward, but you don't realize she's that in tune to you. "Please put my hand on the cover," you ask through the computer. Joanne's hand presses yours to an image of a baby in the womb. Your eyes smart and the bookstore seems to float away, leaving you with just your unlimited mind inside your body of limited functionality. Oh, the irony.
The motor cortex of your brain was severely injured at the time of your birth, resulting in you losing most of your voluntary movement. Your biological mother had been intensely addicted to drugs during your development and looking at that baby on the cover, still in the womb reminds you of why you have such an interest in and pursuit for a career in Obstetrics. As a Dietitian, you'd be able to help expectant mothers learn the best ways to take care of themselves and their unborn children and ensure healthy choices. But you will never forget you dream job as an OB/GYN, as a surgeon, as a doctor, actually assisting life into the world.
A lump forms in your throat and the only thing connecting you with the outside is Joanne's hand over yours. And it suddenly dawns on you that she'll be there when you have your own child. When you want to hold your baby, she'll be there. When you want to interact with your child, she'll be there - a shadow. When your husband needs a hand, she'll be there. And everything will be okay.
"Turn the page?" She offers and you blink back to the present moment. You look into her eyes and an urge to throw your hands around her, builds. Never-minding that you're nearly twenty, you'd totally hug her in the middle of this bookstore right now, hands-down. You can't lift your arms, but if you could - for just one moment - stand from this wheelchair and shout so loud as to shatter the moon, no doubt it'd be to declare: "Thank you, a thousandfold."
"What?" Joanne asks, unsure of why you're looking at her so deeply. You toss your eyes side-to-side with an attempted grin, the equivalent to a dainty giggle. Letting out an exhale, you gesture with your chin for the book to be put back. "That mind of yours," you hear her observe, sensing her behind you as pry your eyes away from the medical books and eye a book on President Reagan. Gold. "Go, girl. I'm catching up!" Without thought, the two of you are suddenly playing tag, weaving through the aisles, laughing up a storm. Your body's in so much pain, but that's not in focus; just this moment of freedom, of being nearly twenty, a college student given wings to fly. The girl behind the café counter chuckles as she watches, but little does she know how important this moment is. She's got a sympathetic look in her eyes, but she has literally no idea... What you have gone through to get to this moment. Someone passes you in an aisle, remarks to his friend, "I'd love to have one of those things." You've been in the same position for nearly 4 hours now (not including the restroom) and can no longer feel your feet. Or your legs. Joanne bobs her eyebrows.
"Pst," she whispers, nodding hello to the boys. "Your type?" You spin around briefly, feeling your body thaw finally and for the first time in 4 hours, you speak with your mouth. "Wait, wait! I gotta tilt!"
"I don't care..." Joanne catches up with you as you press a button to tilt your body backward. "You're it."
"Frappé break!" You yell and she sticks the straw in your mouth. You're sweating as if you'd actually run all over the place, but it feels awesome. "Okay," you breathe, flooring it the other way, out the door and down the sidewalk. "The average person can run faster than 5 miles per hour, Joanne!" You yell.
"Well, I'm not average! Get off my bumper, girl!"
"Nah, you better pick up the pace, or you're road kill." She scowls playfully over her shoulder.
"You wouldn't dare!"
"Wanna test me?" Your squeals numb your spine and all the pain is gone. This is what everyone sees.
Before you even know what hits you, the tears you've buried are dripping off your chin. Joanne kneels before you, wiping them away. "What's up? What do you want to come out?" You think, "What do I want to come out? This is almost laughable. How about, I wanna run, I wanna dance, I wanna style my own hair, I wanna play games like volleyball and badminton... Does she know badminton is my favorite game? I wanna make myself a cup of coffee, and you know, like hold it in both hands and walk at the same time. I wanna jump rope and side-hug and hold my child's face in my hands. I wanna know that I can hold them and tie their shoes, make their meals and you know, be their 'mother'. I wanna say I'll be 'just a sec' and actually be 'just a sec', I wanna just move my limbs without thinking, and swallow without literally telling my tongue how to move, I wanna see my dress flow, I don't wanna sit for twelve hours a day just so I can move when I want, where I want. I don't wanna worry about whether or not there's a ramp, or an electric door, or someone there to pick up something I dropped. I wanna go to a public bathroom without a 'body guard'. I wanna cry, I wanna scream, I wanna say to that kid back there, 'Here, take this chair.' Yes, this machine is cool, yes it's an expensive piece of technological advancement, but you know what? Without it, this intellect of an aspiring doctor would be trapped inside a rag-doll body. That's what I want to come out. For real."
And the tears just shower. Your quaking. And you start to convulse. You know it, too. You can see her, hear her. She's going in and out. People are looking, watching... Guys... Your heart is in your feet. Where are your feet? Where is a raft? A lighthouse? Driftwood, you froth at the mouth and your body has just... Checked out. Again. Damn. Up is down. Down is... You're falling! Joanne, where'd you go! Please! Lord, plant my feet on solid ground.
Sirens flood your head. You swear you can hear the rush of oxygen. Mom's voice breaks the constant beeping of a heart monitor. Hospital. "You're okay, sweetie." Mom? Mom's here. Joanne? Joanne! A hand squeezes your fingers pulling your heart back into your chest. Joanne.
You're So thankful, so overwhelmingly thankful for the woman embracing you right now. "Joanne," you whisper.
"I'm here, dearie."
"I need a bedpan."
"Roger." She grabs some gloves from a drawer and turns you to the left. She closes the curtains and she and mom lift you onto the bedpan.
"Please slide me up." You're exposed to her, but you know what? Everything will be okay.
Three count and you're centered. She turns and when you're finished, you say, "Ready. Um... Is there a mess?" Joanne shakes her head.
"Not a drop, love." Sigh. She turns you on your side. "Okay, tell me if I'm wiping too hard." Lord, I wanna disappear. What man would take her role? Seriously.
"It went down my leg."
"Okay, Love." Instestines are knotted. Gulp. "Nearly done." Thank you, you think, for Joanne. Thank you. Once dressed, you are repositioned on your back. She holds your hand. And a whimper escapes your lips.
"Please rub my feet. I can't feel them." She nods, "sure thing," and rubs the blood back into your toes. Warmth. "You see that doctor?" You ask, and she bobs her eyebrows.
"Ha! Welcome back!" Eye roll.
"I'm serious!" Chuckle.
"Yeah, sure, I saw him. Why?"
"So did I." Joanne cracks up.
"Right here," she laughs, holding out her palm. "Right - here." A high five lifts your spirits... Why?
Because she knows. She knows the story that the public never sees. After a brief moment of laughter, discomfort returns and you wince. The pain gets so intense, the whites of your eyes take over their sockets. "Everything's gonna be okay," she hushes outside the black of fluttering eyelashes. You say nothing, but your eyes say everything, and she hears you moan. Like, moan from the depth of your gut. This pain is bending your threshold into a circle. "We'll fight this together." You manage a smile. "Breathe." How to breathe, how to breathe. Your brain just said "Screw breathing. I'm out." You will not cry. No. No. You will not cry. Laugh. You'll laugh. And you do. You turn the pain into tickles.
"Pain," you tell her. "So much pain."
"Uh-huh," she says, cupping your chin in her gloved hands. "I see it. I do." Her tone is sweet like honey. Picture honey. The pain lessen enough to give you air.
"Joanne. Can I ask you something?"
"Anything."
"You'll be there right? When I'm married, you'll still be there?" She nodded.
"If it's what you want, yes." You nod.
"Good."
"I'll help you with anything you need."
"Will you help me hold my baby?" Your voice breaks. Her eyes blur and she quiets even more.
"Oh, honey..."
"Will you help me be a mother to my kids?" She choked on rising tears.
"You know it."
"Thank you, Joanne."
"It's why I'm here. It's what I do. It's what I choose. And I wouldn't have it any other way."
---
"Like a small boat
on the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion
And all those things I didn't say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time
This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
Cause I've still got a lot of fight left in me..." (Lyrics © 2015 by Rachel Platten)
This is what the caregiver sees.