“Why?” I ask, surprised by the angry tone to my voice.
“It’s … it’s been three years of waiting, and … I’d think you’d be getting a call any time now.”
I duck my head and play with a thread on the blanket draped over Harlow’s legs. “Yeah, I suppose you’re right.”
It wouldn’t make sense to get a job now and a month or two down the road, finally get a kidney, and have to be off of work for weeks on end. It’s a major surgery after all, so I wouldn’t be able to work right away.
It’s one of those things, even after three years, it feels like I’m never going to get that call.
I know that’s not true, it has to happen one day, but one day is so ambiguous that I hate even thinking about it.
“But after,” she says, snapping me from my thoughts, “I think it’s a great idea to get a job. Have you thought about starting dance again?” she asks, and I flinch.
There’s no reason why I couldn’t dance now. Yes, the tube in my stomach would be an eyesore in the tight leotards but it wouldn’t be a hindrance.
I shrug. “It’s been so long. I doubt I’d be any good now.”
My mom gives me a look that clearly says she thinks I’m being an idiot.
“Willa, you were a brilliant dancer. Talent like that doesn’t get up and walk away.”
“It …” I stop and look away.
It’s hard to describe to someone how that part of myself feels so far away, like an entirely different person altogether. When I look back on who I was then, and things I did, it seems like someone else’s life. I couldn’t have possibly done those things or been that carefree.
“I can call them for you?” she suggests, not noticing my lag. “I’m sure they’d let you practice on your own. Ulysses loved you, remember him?”
“Of course I do.”
Ulysses Gordon was the owner of the studio. He’s in his sixties now, but he’d been a brilliant dancer back in the day, traveling the world. His studio was one of the most sought after in all of California to be a part of.
“Do you want me to call?” she asks, her eyes bright with excitement, and I know I can’t say no, besides it might be good for me.
“Yeah, go ahead and call,” I agree. “But only if there’s a time I can practice on my own. I … I’m not ready to join a class.” Especially with being so out of practice. I was sure there would be many moves my body wouldn’t be fluid enough to do anymore.
Harlow glances at me and I can see a question in her eyes. I shake my head, telling her now is not the time. We’ll talk later when it’s the two of us.
“Is your dad in the shower?” Mom asks, standing up.
“Yeah,” I answer.
“Let’s go ahead and get everything on the table then. I’m starving. This smells delicious, honey.” She smiles at me gratefully.
“I hope it tastes just as good,” I reply.
By the time we have the food and drinks on the table my dad has come downstairs in his pajamas with his hair damp.
Dinner is spent catching up; it’s one of the few times of the day we all sit down together. We always make sure to ignore our phones and just be in the moment. Occasionally we’ll watch a movie as a family, but dinner is a must.
After we’ve eaten, my dad heads straight for the chair in the family room and kicks his feet up on the ottoman. He picks up his book and reading glasses from the side table and flips the pages.
I doubt he’ll come up for air until it’s time to go to bed.
“Do you girls mind loading the dishwasher?” my mom asks.
We’re quick to tell her it’s not a problem, and she gives a small, tired smile before disappearing upstairs to shower.
Mom’s a middle school teacher, and how she does it is beyond me. The idea of spending a whole day wrangling kids in puberty age doesn’t sound appealing to me, and she does it five days a week.
Dad, on the other hand, is a lawyer, so he wrangles a whole different kind of people all day long.
Harlow and I clear the table together, both of us quiet. I want to ask her about Spencer, but I know not to do it yet, not in front of Dad. He might be reading now, but if I mention a boy’s name he’ll be sure to come to life.
Between the two of us it doesn’t take us long to get everything cleaned up. We both make our way upstairs and into our opposite rooms. Perry follows me into mine, tail wagging. I think since I’m home more than anyone else he’s attached himself to me and made me his favorite person.
I bustle around my room, straightening it up a little more. I plop unceremoniously into my chair at my desk and lift the lid on my MacBook. I watch some YouTube videos, check Twitter and Buzzfeed, and then get sucked into Pinterest. Finally, I force myself to close it, knowing if I don’t I’ll be scrolling through for another hour, and I need to get ready for bed.
I shower and change into pajamas before walking across the hall and tapping lightly on Harlow’s door.
“Come in,” she replies, and I push her door open.
I find her sitting on her bed, under the covers, typing away on her laptop.
She closes it and smiles when she sees me, moving it to the side.
“Sit.” She pats her bed, pushing pillows aside to make room for me.
I sit, crossing my legs, and brush my damp hair off my shoulder.
“I ran into someone today,” I begin.
“Ooh.” She grins from ear to ear. “This sounds interesting. Do tell.”
I shake my head. I knew Harlow would be all over this.
“We went to school together … before, you know. His name is Spencer. I can’t remember his last name. He knew you were my sister.”
“Oh, yeah, I know him,” she chimes. “He’s a senior but we’re in the same cooking elective. He burnt my cookies once.” She frowns suddenly like this is the saddest thing that could ever possibly occur.
I realize now that I have no more to say about the encounter and I feel silly for being excited to tell her about it.
“Oh, here, have an Oreo,” she says suddenly, grabbing the blue bag buried beneath her covers. “Dad came in, so I hid them—you know he’ll eat them all in under a minute.” She extends the package to me and I take two, shaking my head when she continues to hold it out for me to take more.
“Spencer’s cute.” She gets a conspiratorial smile. “You think he’s cute, right?”
“Yeah, he’s cute,” I hedge. “But …”
I pause, not knowing how to explain to her how I didn’t feel excited by him or have butterflies in my stomach. Not like I’d experienced with the guy Perry had run over outside Cool Beans—a guy I knew I’d never see again.
“I think it’d be cool to maybe have another friend, you know?”
She looks at me. “A friend?”
“Yeah, someone other than you and Meredith. But, I mean, it’s unlikely I’ll bump into him again. But it was kind of cool to see someone I used to go to school with. I guess I thought everyone forgot about me.” I take a bite of Oreo.
Harlow leans forward and wraps her arms around me. “No one could forget you, Willa. I know you think you’re a wallflower, but you’re a wildflower. You grow and sway to your own beat. You leave a mark wherever you go.”
I smile and hug her back, dropping Oreo crumbs on her bed in the process, but she doesn’t notice.
“You’re the best sister ever.”
“Duh.” She flips her hair dramatically. “You lucked out with me.”
I stand up and finish the last of my cookies.
“Good night.”
“Night.” She picks up her laptop and gets back to work on whatever paper she’s currently writing. Smarty-pants Harlow opted to take all honors classes. The little freak. I’m secretly proud of her. I know her courses are hard and I’ve never, not once, heard her complain this year.
I pad down the stairs, my feet thumping on the carpeted hardwood—my dad insisted it be installed so no one could slip—and into the kitchen. I grab
a bottle of water, kiss my dad on the cheek, and reluctantly go back to my room.
It’s that time of day, or I guess evening, where I have to hook up for dialysis.
I swear the monotony of it all is frying my brain cells.
I try not to think about it as I hook up to the machine. I have to do it. The reality is if I don’t, I die. It’s that simple. There’s no point in fighting something that literally means life or death.
If something gave you the opportunity to live, wouldn’t you take it?
I settle into bed, grab my book, and begin to read.
Exactly like every other night.
This morning after breakfast I leave when everybody else does.
Once a month I have to go to my dialysis center to check in and be seen by my nurses and nephrologist.
My mom used to go with me to every appointment, but once I could drive myself I put my foot down and told her she didn’t need to anymore.
After all, she wasn’t sick, I was—why should she have to suffer?
It only takes me twenty minutes to get there. I sit in the lot and turn the radio up. I’m ten minutes early, and I’m not going into that building until I have to.
Don’t get me wrong, they try to make it look homey, but they fail miserably.
Thankfully, I’ll only be going to a small, closed-off room today.
I haven’t had to set foot in the actual center since that first year.
I’ll never forget the endless recliners, with attached TVs, and so many people. Before this, I never knew how many people needed dialysis. Heck, I didn’t even know what dialysis was. The place always burned my nose too with the harsh smell of bleach used to disinfect everything. And yet, even with that antiseptic smell, it still seemed dirty. Not like you could see actual dirt or dust, but there was something about the place that screamed uncleanliness. Maybe it was how unnatural the whole process of dialysis is that made me feel that way.
I tap my fingers against the steering wheel, singing along to the song under my breath. When I glance at the clock again I have a minute to go, with a reluctant groan, I shut off the car and go inside.
The receptionist smiles at me. “They’re ready for you, Willa. Room three.”
“Thanks, Tanya.” I give a little wave with little to no enthusiasm behind it.
I push open the door to room three and find my nurse but no doctor yet.
“Willa,” she beams. “How are you, sweetheart?”
My nurse, Nula, is from the South. I asked her once, I think she told me Georgia, but I can’t remember now and am too embarrassed to ask. That first year when I was diagnosed is still a blur to me. Sometimes I try to remember a distinct moment, but I can’t grasp it. I don’t know whether that’s a defense mechanism or the brain fog associated with kidney failure.
“I’m good,” I reply.
It’s my standard answer.
It sounds better than, “I fucking hate this.” Or, “I don’t want to do this, but I know I’m too young to die.” And even, “Bleh, I hate my life, why’d this happen to me?”
“Good, good,” she chirps. “Sit down and I’ll take your blood pressure and temperature.”
I sit down in the recliner, and she slips the thermometer strip in my mouth. I have the same kind at home. They’re ones you use once and throw them away.
She puts the cuff on my arm, makes sure it’s situated right, and pushes the button so it starts squeezing my arm. Again, I have the same one at home.
I hate having my blood pressure taken now, since it has to be monitored carefully. If I never have to have my arm squeezed again it’d be a miracle.
She takes the strip from my mouth, glances at it, and quickly writes it on my chart.
“Anything new to report, Willa? How are you feeling?”
The blood pressure cuff deflates and she quickly writes down the numbers.
I shrug. “Same as usual.”
She sits down on the chair and slides in front of me. She pats my knee and gives me a sympathetic look. “I know this must be hard.”
I want to snap at her that no she doesn’t. Only other patients know how hard this and what it’s like, but I don’t stay that; instead, I nod.
“It’s not the easiest,” I supply, when she continues to stare at me waiting for an answer.
She nods. “No one your age should be in this place.”
“No one any age should be in this place,” I blurt.
I hate how because I’m young they act like I have more of a right to a transplant, to getting out of this place. Everyone deserves that but, sadly, many aren’t even eligible. It’s unfair in so many ways, but I understand why. There aren’t enough kidneys to go around, and a lot of people have other health issues that deem them ineligible for transplant.
Once upon a time, there wasn’t even enough dialysis for everyone. A committee would pick from the people who needed it, choosing who they thought would benefit society the most and, in the end, deciding the others would have to die.
How would you like having your fate left up to someone else? To decide whether you were a benefit?
It makes me sick to my stomach to think about it, but at least things are different now.
President Nixon made it a law that anyone with chronic end-stage kidney disease—or renal disease, depending on who you’re speaking to—made you eligible for Medicare.
That’s right, I’m seventeen and on Medicare.
I can’t complain; it keeps my parents from having to pay for my dialysis, which without insurance can cost anywhere from six to eight thousand dollars.
People are doing dialysis anywhere from three to five days a week on average.
You do the math.
That’s a lot of people on dialysis.
A lot of days.
And a whole heck of a lot of money being spent.
“Yes, yes, you’re right.” She pats my hand but doesn’t meet my eyes, and I know she’s only placating me. She looks over my chart a moment longer and then stands. “I’ll go grab the doctor and let him know he can come see you.”
She slides out the door and it clicks into place behind her.
I sit on my hands, swinging my legs as I look around the room.
Taped to the door is the standard “Cover Your Cough” diagram, along with an information sheet on no-nos regarding the renal diet.
There’s a light knock on the door and Dr. Keegan pokes his head in.
“Willa!” He smiles, stepping into the room, nurse Nula coming in behind him.
Dr. Keegan is awesome and made me feel at ease from the start. In his forties, he has a daughter my age, and I think that always made him sympathize with my situation. He has dark hair, beginning to gray at the temple, and he almost always has a beard starting to grow like he frequently forgets to shave.
“Hey, Doc,” I chime, with a smile I can’t hide. He always makes me feel at ease, like I’m a person and not a part of a herd of cattle ready to be auctioned off.
He pushes his black-rimmed glasses up his nose and sits down, picking up my chart.
I keep quiet while he and Nula discuss my numbers and a bunch of other things.
Finally, he puts down the chart and listens to my heart and lungs.
After I sit back and he puts his stethoscope around his neck once more, he asks, “How have you been feeling? Everything good?”
“Just dandy—except for the part where, you know, I still don’t have a kidney.”
I’m joking. Mostly.
He frowns, and I instantly feel bad for what I said. I know it bothers Dr. Keegan that it’s been three years and I still don’t have a kidney, but it’s not like he can do anything to help. It’s a waiting game—one we all have to play.
“Well” —he twists his mouth— “it’s been three years, I’d say chances are you’ll be getting a call soon with that kidney. Have you spoken with your transplant hospital recently?”
I nod. “They call me every month. I’m due to go in person
next month for a checkup.”
“And you’re up to date on everything if they would call with a kidney?” He double checks.
“Yeah, they make sure everything stays up.”
He nods and glances back at my chart. “Everything looks great keep doing what you’re doing, and maybe by the time I need to see you again you’ll have that kidney.”
I burst out in laughter. “Yeah, right, but we can hope.”
“We definitely can. I’ll be thinking about you, kid.” He taps my knee with his finger and leaves the room.
“See you next time.” Nula smiles and follows him out the door.
I grab my bag and leave. Start to finish, I’d only been in there forty minutes, but it feels longer.
When the warm air hits my face, I stop and take a breath.
Every time I leave that place I always feel like I’m breathing for the first time. Something about it makes me feel like I’m suffocating. I … shut down.
After a breath, I force myself into my car and drive away.
I head home, not in the mood to hang out anywhere on my own.
Today is one of those days where I miss having schoolwork. It’ll be hours before I need to make dinner. It’s time to kill with nothing really to do. Maybe my mom was right suggesting I get back into dancing. It’d certainly give me something to do when I don’t need to do anything else. I think I’ve had a hard time going back to dancing because in some ways it feels like that part of me died. My life has been different, and it’ll always be different now.
The old Willa is gone, my life where I was normal doesn’t exist anymore. The new Willa will always have to take immune suppressants and watch the types of food she eats—however, not as closely as it’s watched now—and be monitored for the rest of her life by doctors.
Until, inevitably, that kidney fails me too.
I try not to think about that too much, the fact that a transplant won’t cure me. I understand why a kidney won’t last, especially at my age, but that doesn’t make it any easier to deal with the fact that one day this will be my life again.
And I’d be lying if I said I wasn’t envious of the naivety other people have about this kind of thing.
Not just kidney disease, but other illnesses in general.
The Other Side of Tomorrow Page 5