chapter 1

a “normal” day

The sound of my cats trying to kill each other startles me awake. Oreo and Roxy don’t get along very well, probably because Oreo is a prissy prima donna who cares only about herself, and Roxy has an inferiority complex. Every other day, Roxy snaps and attacks Oreo in an attempt to end her existence and become the sole recipient of my mother’s love. Their death battles sound like a hurricane smashing through the house. I groan and look at the clock that hangs on the wall next to my bed, 9:45 a.m. Too early. Let them kill each other. I fall back asleep to the soothing sounds of Roxy tearing Oreo to shreds.

Fun Fact

I drool so much overnight that I have considered hiring a lifeguard to watch me while I sleep.

Only forty-five minutes pass until I wake up for a second time. I’ve never been good at sleeping in. This time, the sun slicing through my bedroom window has stirred me from sleep. I groan again.

“Andrew, can you get me up?” I call. I hear a groan escape his bedroom through his partly opened door. Mom opens it every morning before she and Dad leave for work to make sure he can hear me. I know he heard my call, but it wasn’t enough to will him out of bed. I wait for a few minutes, considering how annoyed I’d be in his situation. I call him again.

“Yea, one sec,” he calls back, still half asleep. I don’t sense annoyance in his voice, and I hardly ever do. He knows I need him.

Andrew groggily enters my bedroom wearing a pair of basketball shorts and no shirt. As per usual, we don’t talk much as he helps me get ready. He pulls my blanket off, rolls me onto my back, and after grabbing a pair of shorts from my dresser, gently and meticulously pulls them up my legs and over my butt. The shirt he chose is a little stubborn getting over my left arm, but he gets it on after a few tries and manages not to break any bones.

“Do you need to pee?” he asks.

“No. I’ll wait til later,” I say.

“Good, because I wasn’t going to do it, anyway.”

My little brother leans over the bed and slides his arms under my knees and behind my shoulders, lifting and carrying me to my wheelchair. He sits me down gingerly, almost getting me in the perfect position (a nearly impossible task). He unplugs my phone from the charger and sets it on my lap, walks to the kitchen to pour a cup of coffee, which he leaves on the edge of the dining room table for me, then comes back into my room. “I’m going back to bed. Are you good?” he asks. I thank him and drive to the dining room to find the coffee that will inject me with the energy to make it through the day.

My laptop is sitting next to the cup of steaming coffee (more like coffee-flavored milk, Andrew made it very sweet). Part of Dad’s morning routine—after getting me up at 6 a.m. for a shower and putting me back in bed afterward—is to open my laptop on the edge of the table so I have something to do when Andrew goes back to sleep. I can’t physically type on a keyboard or lift the cup of coffee to my lips, but like all daily tasks, I’ve found ways to improvise. I have an app for my iPhone that transforms it into a wireless mouse pad and keyboard (I love you, Apple). Sticking out of my coffee is a superlong bendy straw that I ordered off the Internet. It is long enough so that the straw reaches my mouth when the coffee is sitting on the table. Little adaptations like these are what allow me to thrive.

Oreo walks past me toward her food bowl that sits on the kitchen floor. I am slightly disappointed in Roxy. One of these days she will accomplish her mission, and I will sleep beautifully until lunchtime. I open Netflix and put on an episode of Breaking Bad while checking my email and blog. Hundreds of new messages. At this point in my life, the summer of 2012, most of my days start by checking fan mail. Thousands of people from around the world write me to share how my blog has impacted their lives or made them laugh. I am twenty years old, and as my number of followers steadily climbs into the hundreds of thousands, I exist in a constant state of disbelief. The emails will have to wait, though, as will the rest of the work that is starting to pile up for my nonprofit. At that moment I just want to take a break from the insanity and enjoy my coffee while watching Walter White cook crystal meth.

An hour later my phone rings. It’s Mom calling from work as she does every summer morning to make sure Andrew and I haven’t set the house on fire.

“Is Andrew awake yet?” she asks.

“Yeah, he’s on the couch watching The Price Is Right,” I lie, not wanting to give her the idea that he’s being lazy or irresponsible.

“Whatcha up to?”

“Just watching Netflix.”

“What are you guys gonna do for lunch?”

“I don’t know. We’re fine.”

“I know you’re fine. I’m just checking. Can’t your mom be concerned?”

“Yup, we’re good.” We say goodbye.

Andrew comes out of his room shortly after. He collapses onto the couch in our living room, and soon, I hear Drew Carey telling contestants to spin the wheel coming from the television. A few minutes later, Andrew yells, “Yo, do you care if Ryan comes over later?” I don’t. His friends and my friends inhabit our house most days of the summer, but he still always asks to make sure I don’t need his help with anything before inviting people over.

“I just need my teeth brushed, hair combed, face washed, and shoes on,” I tell him.

“Yeah, I guarantee that’s not happening,” he says. Ten minutes later, he helps me do all four things.

Ryan arrives, and Andrew informs me they are going to McDonald’s and asks if I want anything. “A McDouble and a large sweet tea,” I say. Andrew says, “Okay. So a cheeseburger and a small sweet tea because you weigh thirty pounds, and I’m not wasting money on food you won’t eat.”

Twenty minutes later, Andrew and Ryan come back with the goods. Andrew cuts my cheeseburger into four quarters and grabs me a plastic fork (metal forks are too heavy for me, but a fork is necessary since I can’t lift my hands as high as my mouth). We eat and play FIFA and go swimming. A summer day doesn’t get much better in my mind. It’s relaxing, simple, and nothing happens to remind me of the disease that’s slowly destroying every muscle in my body. Just a normal day in the Burcaw household. I say “normal” but what I really mean is “normal for us.” Ever since my diagnosis, the idea of normalcy has taken on a very different meaning for my family and me.

Text copyright © 2014 by Shane Burcaw