by S. C. Megale
Mom and Dad still weren’t laughing. Their expressions were tight and nearly identical. This place and all its medical features made them think of some of the things I couldn’t today.
“Pretty much,” Dr. Clayton confirmed. “I’ll conduct measurements and compare them to last year’s, then we’ll talk about management.” He looked at my parents. “Good plan?”
“Good plan,” Dad said.
Dr. Clayton turned to me and spread his arms. “May I?”
I liked when Dr. Clayton lifted me. He swooped his arms under me and vaulted me into the air in them. I could always feel the level of duress my weight put a man under; either their arms shook and sagged, or they were firm and buzzing with energy. Dr. Clayton was somewhere in the middle, but closer to the latter, and for his age, this surprised me. I guess he was experienced at carrying his patients.
I hit the tan bed with an ooph and the tissue crackled. Like a maniacal tailor, Dr. Clayton ripped out a tape measure and the experiments began.
He tugged and pulled things, opened and closed them. He measured the flexibility of my stiff joints. The pressure of my frozen foot muscles. With an unapologetic shove, he flopped me over to my side and called out numbers that Mom scratched down with a pencil. She had the professional intensity of a nurse practitioner.
This is what Dr. Clayton did: He gathered my data, tallied up spreadsheets, and presented the information to the labs and research councils to figure out strategies for my best life in the long run with my brand of muscular dystrophy.
My head spun by the time I landed back in my chair.
Dr. Clayton flapped papers out of a folder and compared the measurements. Mom’s and Dad’s gazes were hooked on him in silence.
“She’s plateauing, for the most part,” he declared. He flipped a page to its back. “Some areas are tighter by a degree and a half, but that’s normal rigor effects from the chair.”
“Is there anything we should be doing?” said Mom. It was amazing to see her aggression and ferocity diminished in the specialist’s presence.
“What do you mean?” Dr. Clayton retook his seat in the office chair.
“To prevent the decline of her muscles and mobility,” Mom asserted. “More physical therapy?”
My heart clenched at the idea.
Dr. Clayton’s lips pursed. He looked at me when he answered. “I don’t want more therapy for Maeve. I want more life for her.”
There was a silent pause. Dad kicked my rear wheel lovingly with his foot.
“I was reading in Hope,” said Mom, “about a steroid called Alvatraxon being introduced to improve muscle capacity. It’s being hailed as a breakthrough treatment. How do I get Maeve on the trial? Can you recommend any—?”
“It’s not effective.” Dr. Clayton shook his head. “It’s good press, but no more than a steroid you or I could take.”
“Won’t it help her? Even a little?” Some of Mom’s insistence was returning. “She’s lost the ability to raise her elbows.”
Dr. Clayton studied me again, sort of like I wasn’t there. “It would give her a boost, and she’d crash after. The effects prove short-term, but are almost counterproductive in the long run.”
The juice ain’t worth the squeeze. I glanced at Mom. Her determined expression was wavering. Dad put his arm around her shoulders.
“There’s no treatment,” said Dr. Clayton. “But I don’t blame you for exploring everything.” We had heard this before; his tone was a gentle reminder. Still I noted how cure wasn’t even on the table. “You’d be my first call. This is my favorite patient, you know.” He grinned.
“You say that to all your patients,” I said.
“No.” Dr. Clayton smiled. “I really don’t.”
Silence stretched. Dr. Clayton looked at everyone. We felt the pressure of our time being up; more patients outside waited to be seen. Just as Dad inhaled a breath to say the parting words, I spoke up.
“Mom, Dad,” I said. “Could I have a few minutes alone with Dr. Clayton?”
Mom and Dad looked at each other. With slightly confused expressions, they nodded and slowly, wordlessly, slunk out of the room.
It seemed to take forever for the door to close.
Dr. Clayton turned and looked at me.
“If you don’t ask the questions that I hope you do,” he said, “I have some for you.”
“What?” I blushed.
Dr. Clayton huffed and crossed his leg over the other. “What did you want to ask?”
I swallowed. The ticking of the wall clock seemed like dynamite in my ears all of the sudden.
Dr. Clayton cleared his throat playfully.
“All right,” I said. “I just have some questions ’cause…” I sighed. “There’s this guy.”
Dr. Clayton’s face broke into a wide grin. He raised his hand up to me for a high-five and his voice was hushed. “Yes!”
I laughed and high-fived him. What was going on?
“Yeah.” I chuckled, feeling like my blood was bursting with confetti.
“That’s what I hoped you’d say,” Dr. Clayton replied. “What are you wondering about?”
“Well.” I reddened deeper. “You know. I heard you rattle off about my stiffness and plateauing and everything, I just want to know, like … How? And Can I?”
“Of course you can,” said Dr. Clayton. “Masturbation isn’t a problem; that won’t be either.”
“What do I need to say so he won’t hurt me?” I said.
And when I said he, did I speak in generalities? Or did that he have a name, a face? I imagined Cole’s enormous height and muscle pushing over me. I should be terrified, but a swoop of excitement went through me instead. I want to be crushed.
“You need to let him know you can, and you want to,” said Dr. Clayton. “It’s understandable that he’ll be hesitant.”
“Right,” I said.
“And you need to tell him that this”—Dr. Clayton grabbed my forearm and hovered his hand over mine to showcase how badly my fingers shook—“is not because of him.”
“Right,” I said.
“You’re going to have trouble with some positions, but you’ll figure out what’s fun.”
“Are you feeling like a creepy old doctor yet?” I said.
“A little.” Dr. Clayton was blushing now too. “I’m just so happy for you.”
Sadness draped over me. His pride in me was premature; I didn’t have any guy. There just was this guy. I wasn’t going to break that to Dr. Clayton now, though.
There was a pause, and Dr. Clayton laid his hand on my arm. “You know your parents know what we’re talking about right now.”
I blinked, and my brow pinched. “They do?”
“Of course,” said Dr. Clayton. “They worry about it too.”
Ew. That kinda killed the buzz for me, but I was curious. “I’m pretty sure they’re not thinking about that.”
Dr. Clayton’s lips formed a hard line. “They want that for you like they want everything else for you.”
I hushed thoughtfully.
“Now, what else?”
“During,” I said.
“Yes?”
“I worry about my breathing.”
“You’re going to literally die, aren’t you?” said Dr. Clayton.
“No.” I laughed, swatting his hand off my arm. “Seriously. My lungs are weaker, my chest. I’m worried something could, I don’t know, happen.”
Dr. Clayton’s face twisted in surprised confusion. “That’s your worry?”
“Isn’t lung failure the number-one killer of our disease?”
“Have you felt greater resistance lately?” said Dr. Clayton.
“I don’t know,” I said. “It’s hard for me to tell.”
Dr. Clayton rose and pulled a stethoscope from his drawer. He placed a cool hand on my chest and the instrument between my shoulder blades.
“Deep breath.”
I obeyed. He moved the stethoscope around. Again. Again.
/>
Dr. Clayton was very silent when he pulled the stethoscope from his ears and walked around to me.
“Your lungs sound weak,” he concurred, lowering back in the chair. “More seriously than I hoped. Why didn’t you say so earlier?”
“Weak is normal for me. And it felt like cheating on my pulmonologist.”
Dr. Clayton doesn’t specialize in lungs, but he watched me and his jaw muscles shifted. “That does concern me a little.”
I nodded; my movements felt fast and jerky.
“I want you to do some breathing exercises once a day.”
“Okay,” I said.
“And I want your parents to consider a BiPAP mask for you at night.”
“God, no,” I moaned. BiPAP masks were loud oxygen masks worn over the face at night, like Uncool Darth Vader. They were for the Google Images result kids who I say Screw you, I’m stronger to, not me.
“I know,” said Dr. Clayton, “but it’ll expand your lungs and allow more oxygen to fill them. They’re not expanding far now. One bad cold into pneumonia, and we could have a serious problem on our hands, Maeve.”
“Okay,” I repeated.
“Stay away from crowds, use that hand sanitizer. And don’t stay out in the cold. All right?”
“All right,” I said.
“Good.” He stood, uncoiling the stethoscope from his neck. “And Maeve?”
“Yeah?” I said.
He tousled my hair with his knuckles. “He’s lucky.”
* * *
I slammed the door to my bedroom with my chair so hard that night, it made a dent in the wood two inches wide.
Tens of random messages sprang onto my phone screen, and I swiped them away fast like bugs smeared on a windshield.
Adrenaline ripped through me, thoughts that had been building with every mile since I left the doctor’s. My eyes darted around the phone. My heart clogged my throat like a water balloon, and before I could lose the nerve, I was there, staring at the text message thread.
I’d never replied to the last one.
The reply hey came instantly.
The phone wobbled in my grasp. Hard.
Dr. Clayton was wrong about why my hands shook.
10
Forget butterflies in my stomach. I was loading butterflies into a cannon and blasting them through every corner of my body, wings and severed antennae flying everywhere. I sent Mags the screenshots.
Good four-minute space between texts.
Another terrifying gap, three minutes this time.
I grinned with pride at the screenshots loading into Mags’ text thread. They were like certificates of authenticity.
I know it was intense, but I sent it. I expected Mags to reply with a sock of reality. That’s awesome, but remember it’s just a date. Or Play it cool. Or Don’t get too attached yet.
I smiled at her on the screen. When I blinked, my eyes were warm and wet.
I blushed. Dammit, Mags. She knew me.
What the hell. I screenshotted the last slice of Cole’s text thread and sent it to her.
Mag’s reply came in.
I knew what. I just wanted to hear her say it.
There was a lapse before Mags responded. I went to my bookshelf and slammed back in the print script of Alfred Hitchcock’s Psycho. Usually that’d be a struggle; tonight, I had the energy to punch it hard. The cell phone buzzed in my lap.
I laughed, because Mags wasn’t even being sarcastic.
There was an even longer lapse this time. The thrill and novelty must be wearing off a little.
Hmm. My mouth sagged.
I puckered contemplatively but let it go and was smiling again soon enough, sending Elliot no prelude, just screenshots of Cole accepting my date.
By that time, I’d taken enough deep breaths and screamed out my excitement to Mags sufficiently that I thought I could call Dad in to carry me to bed without him asking me what’s up.
“Be there in a minute.” Dad’s muffled voice called through the closed door.
I rolled to my desk where my petite laptop perched—I’d bought it because its 1.8 pounds were just about manageable. As Dad’s tired, thumping steps approached my room, I snapped the laptop closed. Just in case. I never remember what shit I have up on there. But I didn’t think I’d need it now anyway. I laughed once more, to no one. To me.
God. This was happiness. Happiness that could really exist for me.
I glanced at my phone.
Dad knocked and opened the bedroom door. I loved that he knocked.
He lifted me into his arms and set me on the mattress.
* * *
Thump!
Someone dropped a pile of books at the table to my right the next day after school, and François lifted his head off his paws. A new stuffed giraffe toy was in his mouth—I’d treated him, for doing absolutely nothing, in the pet supply store a few buildings down. Now it was my turn: the specialty bookshop.
Late afternoon sun poured through the store’s front windows; a brick courtyard with a splash fountain—the kind with just holes in the ground that little kids run around in—was outside. The fountain shot up like a geyser and misted down at that moment, raking sparkles through the air. It was totally erotic.
“It’s okay, François,” I cooed. François looked over at me with raised eyebrows, if dogs even had eyebrows. His mouth was lopsided with the stuffed giraffe filling it. I couldn’t help but shake my head. God, he was cute.
The smell of old paper and loose cloth covers almost neutralized in my nose by now, I’d been waiting here so long. Pages flapping and books shuffling off the shelf and creaking open gave the ambiance a nice hush. This shopping center was only a few miles away from the community college campus, so you’d think it’d be affordable for, like, broke college kids. Instead it stocked weird antique tomes asking $800 and rows and rows of intense fantasy role-playing games. A gaming club was in the corner now, members drawing a tape measure over an intricate board and rattling sixteen-sided dice in a plastic tube.
But this store also stocked the things I needed. Film and theater scripts.
I’d studied the greats in here: Hitchcock, Spielberg, Tarantino, Fincher, Nolan, Francis Lawrence … I wasn’t a Shyamalan fan. I know they didn’t always write their scripts, but I’d read them and remember how they shot it and try to picture how they’d riled their actors up to deliver that line or this emotion.
One of the clerks had been looking in the back now for fifteen minutes for a special script I’d requested.
The truth was, I had a plan to produce this script. To direct it.
To cast Cole in it.
I sighed and pulled out my phone. It was on silent in here, so that meant I had to check it three times as often for messages.
There continued to be nothing.
In another hour, I’d text Cole to iron out the details of our date. I hadn’t wanted to seem overeager by texting before now. But this silence—from everyone—was a little unnerving.
Then I remembered I had unfinished business. May as well, to kill time. I pulled out the website Quinten had given me for Wheelchair Charity Woman.
It took a few spins of the arrows on my phone to load the web page, and I rubbed my temple with the tips of my fingers, unable to apply much more pressure.
Finally, some pictures loaded on the screen, then the website name, then the tabs.
In elegant, cutesy font, the web page title spread across my phone: Caring Hands Camp.
I groaned so roughly the gamers glanced over at me. I already knew what shit I was in for with that title. My thumb flicked the screen to scroll down.
There were blocks of writing authored by Wheelchair Charity Woman herself, starting with a brief biography of her career in social work and nonprofits on Long Island. It said she started the camp for a “darling” girl with muscular dystrophy named Ginger T. Whatever, and I clicked on the link to her photo but the link was broken. Then the content segued into the camp here in Frederick
sburg, held four times a year, dedicated to special needs kids. My bitterness twisted and writhed into maybe empathy as I read about the adapted activities available: horseback riding, boating on the Rappahannock, even a prom night. On Wednesdays they had something called a petting party that honestly sounded right up my alley until I clicked on it and saw photos of wheelchair users in a circle petting rabbits on their laps.
But they looked happy. More high-resolution photos popped up of smiling handicapped children and laughing counselors outdoors.
Fine.
I sighed.
But why was Wheelchair Charity Woman at the retirement home too? Why did she maybe commit a felony by maybe stealing François?
A text window slid down the top of my phone like the map a teacher rolls down over the blackboard.
I smiled at KC but x-ed it out. I’d have to respond to that after the investigation.
All over the camp’s site were buttons to donate. There was even one of those thermometer-looking fundraiser bars on the side of the screen, showing the financial goal of the camp, which was $65,000. Right now, it was filled in with blue to about $17,000.
A highlighted line of text was beneath the chart, clickable. It read: Why should you donate?
I clicked it. A new page loaded.
We keep camper registration and boarding fees low enough for all campers to attend, but the freedom, happiness, and experiences Caring Hands Camp provides aren’t possible without your generous donation.
Why is Caring Hands Camp so important to our campers? Imagine the constant struggles our campers face in the outside world: rejection, exclusion, and misunderstanding. Caring Hands Camp provides a refuge from that reality, if only for a few weeks out of the year.