Until the After

Madison Burba
Chapter 1: Libby
Tapping my foot under my seat, I waited. It was a nervous habit I had picked up from spending hours waiting in hospitals. But as time passed by and the minutes blurred into hours, I started to get worried. Usually, that meant that something was wrong — really wrong. The last time I had waited this long was when I found out I had a brain tumor, glioblastoma multiforme, that had no cure.
But it's fine. Well, as fine as it can be, I guess. I don’t need your sympathy or pitying looks. I came to terms with the fact that my expiration date wasn’t as far off as your average seventeen-year-old a long time ago.
Sighing, I reached into my backpack and grabbed my sketchbook and pencil. I needed a distraction. Biting my lip, I looked around the waiting room for someone to draw. Over in the corner, two women sat side by side, hands tightly clutching each other, their faces identical masks of pinched worry. Sitting across the room, a large group of people was gathered. Little kids raced around the adults as they grinned and excitedly chattered in anticipation.
Turning my head, my eyes roamed across the room, searching for more potential subjects. I paused, my gaze stuck on an older man sitting by himself. His head was bowed as he stared at the carpeted floor, eyes downcast. His shoulders were slumped and his wrinkled clothes and disheveled appearance made it clear that he had been waiting for a while. He wrung his hands together nervously and glanced at the clock before focusing his gaze back on the floor.
My pencil scratched across my sketchbook as I started to outline the man’s face. Soon, worried eyes and a wrinkled face peered up from the page above me. Continuing to shade out the rest of the man’s face, I glanced across the room as the door heading towards the surgery wing of the hospital opened.
I watched as a doctor entered the waiting room and looked around with searching eyes before rubbing his forehead and sighing. He slowly approached the older man, who had seen him coming and was sitting up straight, his face unreadable. The doctor somberly spoke a few words, but before he could finish the man bent over, unable to keep upright as his face crumpled in defeat. The man covered his face with his hands, but I could see his shoulders shaking in grief.
I turned away.
I didn’t need a preview or a reminder of what the inevitable would look like. I didn’t want to have to imagine Mia or Dad in the exact same position when they hear the news that I have finally died. As much as I had accepted the fact that I am going to die soon, I didn’t want to see how my being gone would hurt the people I’d leave behind. I didn’t want to know that I was responsible for shattering their hopes and dreams and hearts. I was a tornado, whirling through their lives with the air of destruction and devastation, leaving everyone in my wake to pick up the scattered, broken pieces.
I have loved art for as long as I can remember, sketching most of all. I remember watching a street artist sketch someone’s portrait in a matter of seconds. I was mesmerized by the way their pencil flew across the page, almost as if it had a mind of its own.  My own fingers twitched as I watched the artist’s wide sweeping strokes, imagining making those same movements and mimicking the artist’s familiar ease.
The minute I got home, seven-year-old me demanded my dad to go buy me a sketchbook so I could practice. The moment the tip of my pencil touched the page, the opportunities suddenly felt endless. I thought that with a pencil in one hand and a sketchbook in the other, I could do anything, be anything. I could dare to dream.  Even now, I am still in awe of the people and places I can create with a few short strokes. You can tell tales of love and destruction and eternal sadness or nostalgia with a sweeping line and a little shading.
Sometimes I would get so focused on my work that hours would pass by without me noticing until I looked up and noticed the streetlights’ dim glow, pushing the heavy midnight darkness away. So when I started getting headaches and my vision started getting blurry, I brushed it off, thinking I had been straining my eyes by staying up and drawing too late. A visit to the optometrist’s office and I thought the problem was solved. I got contacts and kept on drawing, never quite realizing that while I could see better, the headaches never quite fully went away, settling into a dull constant ache.
Then I started getting seizures.
It’s funny how vividly you remember the moment before your life veers off course, before everything as you knew it changes, before everything you thought you had, all your hopes and dreams and plans for the future, come crashing down. The last moment before you lose everything.
Five Years Ago
Mia and I had been planning this sleepover forever. With her constantly at volleyball practice and tournaments and me being busy moving houses, this was the first free weekend we’d had to hang out in weeks.
“Why are you making more popcorn? '' I asked her. “Not that I’m saying no to more free popcorn, you know me, but we have a ton in this bowl already,” I gestured to the giant bowl I held in my hands before wincing, noticing finally that it was almost completely empty, “Sooo,” I said stretching my words out, “I maaay have eaten a liiittle more than half the bowl.”
“Really?” Mia said dryly, raising an eyebrow before rolling her eyes and grinning. “You, Libby Evans, eat all the popcorn? Crazy.”
“Hey,” I threw my hands up, “I can’t help that popcorn is basically the best food on this planet — besides dark chocolate. Dark chocolate’s amazing.”
“I can’t even pretend to understand you,” she said, shaking her head and laughing as I walked over to the pantry and rifled around until I found what I was looking for.
“Aha! Here it is,” I called triumphantly, snatching the bag of chocolates. 
“Ugh! Dark chocolate. You’re insane. Milk chocolate is the clear winner. The only reason we even have dark chocolate here is because of you.”
“It’s okay, Mia. You can admit that dark chocolate is just—”
All of a sudden, my hand started twitching out of nowhere, causing the chocolate bar I had been holding to fall to the floor with a thud. My whole body began seizing up, slow at first until it became full-fledged convulsions. I fell to the ground, trying to make my jerking and flailing limbs stay still. What is happening? I thought frantically, my heart racing. Just make it stop, make it stop!
I desperately tried to open my mouth and call out to Mia for help, but I couldn’t control my actions. It was like someone had temporarily taken control of my body, moving me around like a puppeteer. I was completely helpless and at the mercy of whatever had taken control of my movements.
“Hey, Libby, the popcorn’s done,” Mia called, her voice drifting nearer to the pantry. “Libby? Libby…” she called as she entered the pantry. “LIBBY!” she screamed as she entered the pantry, her eyes falling on my seizing body.
“Don’t worry Libby, it's okay. Mom, call 911! It’s Libby, she’s having a seizure. MOM, HURRY! Come on Libby, it’s okay. I’m here.” Mia’s face, creased with worry and panic, was the last thing I saw before I blacked out.
Insistent, stubborn beeping woke me up out of my sleep. I groggily tried to sit up but froze as my head started throbbing and sat still until the room stopped spinning. Squeezing my eyes shut, I lay back down before opening them again to try and take in my surroundings. Bright lights illuminated the white room and unfamiliar bed with scratchy sheets. Where am I? Why am I here? I thought to myself, dazedly trying to search my memories for answers.
With a start I gasped, it all started flooding back. The popcorn. The seizure. Mia’s face. Flashes of red and blue lights and shrieking sirens. I was at the hospital, but why? Looking over, I saw an IV taped to my hand and a heart monitor stubbornly continuing its constant rhythm.
Well, that’s going to get annoying fast, I thought, inwardly groaning at the never-ending beeping. Why do I even have this stuff? I’m not sick — people have seizures all the time for no reason. Can’t they just send me home with some medicine and then I’ll never have to worry about this again? I mean, seriously, I’m fine.
“Mr. Evans, she’s awake!” I looked over and saw Mia leaping out of her chair with my dad and her parents in the doorway. In an instant, four different voices were all speaking over each other:
“Libby, I was so worried about you!”
“How do you feel?”
“Now, don’t try to sit up.”
“Just rest, do you want some water?”
“Oh, I’ll grab some—”
“Hi,” I croaked as I tried to reach for the water but couldn’t. Why am I so weak?
“Here you go,” Dad lifted the straw to my lips and I greedily drank from it.
“What happened?” I asked. Gradually, they began to fill me in.
Mia and her parents met my dad at the hospital as the doctors raced around the room, shouting orders until I finally blacked out. They’d stopped the seizure quickly enough once I arrived and kept on saying how lucky I was to have no brain damage — well, as lucky as any person who had just randomly had a seizure could be. The doctors were more perplexed about what had caused the seizure than any lasting effects it may have.
 I sighed thinking about this. The doctors had been running countless tests, trying to find out what was wrong. So far, though, they had come up with nothing and the seizures had been getting worse. The best they could do was keep running tests and stop the seizures as they came until they found answers. But what’s worse than being tested all day and poked and prodded by a revolving series of doctors is when the tests stop. No doctors walking in and out, no nurses constantly checking my blood pressure and vitals.
I had been in a constant cycle of “not knowing.” For so long, the idea that they may have figured out what was wrong with me and worries of how bad the diagnosis would be made my blood run cold.
Dad wasn’t helping my suspicions that the doctors had finally made a diagnosis either. He kept wringing his hands together and glancing at me, then looking away when I noticed him looking, pacing back and forth in the tiny hospital room, unable to keep still. His tense stance and wrinkled forehead did nothing to reassure me. But if I didn’t ask any questions, if I didn’t demand answers about the diagnosis, then maybe we could both pretend that I was fine. Just another healthy twelve-year-old doing a stint at the hospital, something we could all laugh about years from now. The doctor walked in, breaking the spell, and Dad ended the silence that had steeped into the room.
“Hey Libs, the doctor’s got something to tell you,” Dad said softly, looking up at Dr. Chen. “It’s important,” he said, trailing off as he squeezed my hand.
“Libby, we have concluded from your most recent CTs and other tests that you have something called glioblastoma multiforme, which means that certain genetic mutations in your cells have caused a brain tumor to appear in your cerebrum. With chemo and radiation therapy we can buy you a few more years, but…” He paused, taking a deep breath before finally saying, “Libby, as of now, there is no known cure. We estimate you have around five years left to live. I am so sorry, Ms. Evans. I’ll be sending in one of the neurologists to discuss possible treatment options later, but for now I’ll give you two some time alone to process.”
And with that, he turned on his heel and closed the door behind him, leaving me and my dad sitting there, shell-shocked.
I didn’t even know how to react to the news besides sitting there in stunned silence. How were you supposed to act when you learn that you won’t exist in a couple of years, that everything you had ever hoped for or dreamed of doing wasn’t going to happen anymore, all because you wouldn’t be alive or would be too sick to do them? I couldn’t even comprehend the idea that one day I simply wouldn’t be here anymore. It seemed unfathomable, more like a made-up story meant to scare little kids than something that was real.
“Libby Evans?” a nurse called, snapping me back to the present. Right. Only my biggest doctor’s appointment of the year. This was the one where Dr. Chen, the head of the experimental trial that treats people with tumors like mine and the doctor who had first diagnosed me, was going to check my progress and make sure I still qualified for his trial.
“Hey Sophie,” I said, waving as the woman in navy blue scrubs who had called me started walking over. I’d known Sophie forever. She had been with me since my first seizure. She was the only one who realized how I was sick of everyone rushing to help and fussing when I dropped something or reached to adjust my pillow. She shooed everyone out, telling them I needed my rest and some space for a little while. After that hospital visit, she was always looking out for me making sure everyone wasn’t crowding me too much or making sure I didn’t get any of the grumpy nurses while doing chemo.
Sophie’s always been there for me. As much as I loved my dad and Mia, Sophie got how I felt. Over the years, I’ve learned that the reason she got me so well is because she went through the same thing as a kid. Sophie was diagnosed with leukemia when she was little and throughout her childhood was in and out of hospitals until she was finally declared cancer-free. Except Sophie didn’t have anyone to lean on like I did. Her dad died when she was little and her mom left her at an orphanage as soon as she got the diagnosis. She told me she became a nurse to help make a difference in people's lives to be the bright spot she wished she had when she was sick. So when I told her about my mom leaving when I was just a baby and how it was just Dad and me, she didn’t blink an eye, just pulling me into a hug. Ever since then she’s kind of been like my adopted hospital mom. Even though I don’t see her outside of the hospital, I’m at the hospital so much anyway that we see each other all the time.
“Hey Libs,” she said, handing me one of the scratchy patient gowns I absolutely hate.
“Do I have to wear this?” I complain, even though I already know the answer.
“Sorry, hun, I don’t make the rules here,” Sophie said as she began the never-ending process of checking my lungs and blood pressure. I pulled on the gown and shivered in the frigid hospital air. My hair was long gone thanks to chemo. While I usually just wore a wig, today I hadn’t bothered and the beanie did nothing to stop my scalp from prickling in the air conditioning.
“Let’s just get this over with,” I sighed, hopping up on the examination table. Sophie put on the stethoscope and told me to take deep breaths, which these days are a whole lot harder than they should be. By the time she’s done checking my lungs, I feel out of breath and am swaying slightly as waves of dizziness and the promise of another migraine wash over me.
Sophie gives me a knowing look and pulls over a chair to the computer and begins updating my chart. “So, how have your headaches and vision been?”
I think back through the past months about all the times my vision would get blurry or black out temporarily and all the head-splitting migraines I’d been getting lately.
“My vision blacked out yesterday and I couldn’t see for a couple of minutes,” I muttered, looking down at my feet. I knew I had to tell her everything so she’d be able to help when something went wrong, but I still hated it. I didn’t want everyone to know that I was getting worse and worse as time went by. “Really it wasn’t even for that long and it wasn’t that bad.” I said quickly.
“Libby, you need to tell me when this stuff happens. How else are we supposed to help you?” she said, running her hand through her crazy thick dark hair, something she always does when she’s exasperated with me.
“I know, I know, I just hate admitting stuff like this. I mean, it's only a sign that I’m getting worse.”
“Libby, you're in one of the best experimental trials for Glioblastoma tumors. People travel from all over to be in this trial, which need I remind you has given you so many more years? Years, Libby. I mean, you’re incredibly lucky, you give other people who have tumors like yours hope. You’re proof the trial is effective.” she said.
“Yeah, yeah, I know, but let's not talk about the medical mystery, worldwide hope thing. I still deal with the same stuff other people with brain tumors deal with, I’ve just had to deal with it longer. I hate it when people think that somehow it's easier for me or better because I’ve lived longer than any other glioblastoma tumor people. I still have to deal with all the headaches, seizures, and chemo too.” I said.
This never failed to annoy me. People think that I should be grateful for this trial and how much longer it has given me. And I mean, yeah, I am obviously happy I’m not dead before eighteen, but it’s not like the past five years have been exactly enjoyable.
“You’re also still alive.” she pointed out. “That’s doing pretty well. Libby, I know this is hard for you, but you’re alive. Be grateful for that.”
When I failed to respond to that, Sophie stood up and asked, “Are you ready to go down and meet with Dr. Chen?”
I sighed, ready to put this day behind me. “Yeah, I guess I’m ready,” I tell Sophie, picking at my fingernails.
“Hey, it’s going to be okay. I’m here for you, Libby, no matter what. I promise.” Sophie gave me a quick hug before saying, “Now get on with it. Your dad and Dr. Chen are waiting.”
With that, I slipped out of my hospital gown, pulled on my sweatshirt and leggings, and headed towards the elevator.
As I walked into the elevator and reached out to press number five, I saw my hands shaking. For once, it wasn’t a seizure. It was because I was terrified of what Dr. Chen had to say next.
After I had been diagnosed, I pretty much gave up on living. It had killed Mia and my dad to see me like that, listlessly staring out the window and not talking to anyone. I hadn’t gotten out of bed for days and had refused to eat. As weeks passed, I had grown thinner and thinner and dark circles had appeared under my eyes. I had given up and wasted away, waiting for death to take me. I thought it’d be better to be ready to die rather than try to survive this unsurvivable tumor. I didn’t want to die hoping I would be the one to live. I was scared to try to live. I thought fighting this would be setting myself up for eventual disappointment.
The only thing that changed my mind was when I heard Dad crying. It had been another sleepless night at the hospital and I had been trying to fall asleep for hours. I wasn’t supposed to hear what Dad was saying outside the window, but he thought I was asleep and didn’t bother trying to stay quiet.
As soon as he left the window, I sat up, replaying what he had said with tears streaming down his face. Just nine little words. Nine little words that made me want to try, to fight again.
The whole time he was there, all he said were those nine words, “Please don’t give up, don’t leave me too, Libby.” And I didn’t leave him. Instead, I fought back. I refused to give up, making headlines around the medical world for being the person who had lived with a tumor like mine for a record-breaking five years and was still alive and fighting to make it six.
Sometimes on bad days I still blame him for making me want to try. I know that it’s only a matter of time before the tumor or the chemo finally gets to me and I resent him for making me hope. Hope is a fleeting, disquieting thing. It lifts you up, letting you soar and bask in the warm light of the idea of what could happen. But the higher hope lifts you off the ground, the harder you’ll fall when it lets you down.
The elevator door opened, snapping me out of my head. Focus, Libby. You can’t have your head stuck in the past. Not right now, not today, I chode myself. I walked up to Dr. Chen's office door, familiar from years of visits there, before pausing. I closed my eyes and took a deep breath before grabbing the door handle. Then I stepped into the room where Dad was waiting.
“Hey, Dad.”
“Hi, Libby. How was it? How’s Sophie?” he asked, both of us trying to avoid talking about what was at hand.
“She’s good,” I said quietly as I sat down in front of Dr. Chen’s desk next to Dad.
“That’s great, tell her I said—”
The door opened. Dad and I both turned to each other wordlessly. We both knew that everything rode on this moment, what he would say next. Dad reached for my hand and held on tight as Dr. Chen settled into his desk, flipping through my latest charts, blood tests, and results from my last round of chemo before clearing his throat and looking up at me.
“Libby, I’m so sorry to tell you, but the Avastin is no longer working with your immune system to shrink the tumor. Instead, the tumor appears to be growing at a faster rate than before, reaching deeper into your cerebrum. We did everything we could but, well, these tests confirmed it. Chemo and radiation therapy are proving to be more harmful than helpful. I’m afraid we’re going to have to remove you from the trial.”
He paused as I sat there reeling, but before I wrap my head around the thought that I was off the trial that had saved my life and given me all these years, he continued:
“I am also afraid that your charts indicate that the glioblastoma is rapidly growing. With the rate of tumor growth steadily increasing, we estimate that you have…” He swallowed and took a moment before continuing. “That you have nine months left to live.”
Chapter 2: Libby
My whole body tensed up and froze as I sat there, stunned. My brain was short-circuiting, running Dr. Chen’s words through my head in an endless loop. I’d seen this coming; it’s not like I wasn’t expecting the news at some point. But being told that one day you would die is different from being given an expiration date like something you’d buy at the grocery store.
My fists clenched tightly by my side as a white-hot flash of anger washed over me. I was angry at my dad and Mia for making me believe I had a shot. I was angry at my tumor for stealing my future. I was angry at Dr. Chen’s irritatingly deceptive calm face as he explained what this would mean for me. I was angry at the world but mostly, I was angry with myself.
My dad, Mia, Sophie, and the trial had all given me hope and like an idiot, I’d clung onto it with two hands and refused to let go. I was Icarus: my soaring hope had flown me too close to the searing sun and now I was plummeting back to earth with a cold dose of reality.
You can tell yourself you’re going to die, you can plan and prepare all you want, but nothing comes close to actually hearing that you will die before the year is over.
The word “never” rushed through my head. I’d never get to turn eighteen, I’d never get to bask in the warm breeze under the shining sun on a spring day, I’d never get to go to college, I’d never get to become an artist. There were so many places I had dreamed of seeing. So many things I had dreamed of doing. I was going to do so much with my life, but now everything had been cut short.
Dad tightly squeezed my hand, struggling not to cry as he focused on Dr. Chen going on about my quality of life. Me? Not so much. There was nothing Dr. Chen was going to say that could give me back these final days, so what was the point? I dazedly stumbled out of the room. The only thought running through my head was, My life is ending before it even really begins. How am I going to tell Mia?
As I ran upstairs to my room and slammed the door behind me, I caught a glance outside the window. It was the hospital. We had moved on the street across from it after the brain tumor and all the midnight hospital runs and chemo visits. The one good thing that had come out of the move was that I got to live right next door to Mia. Mia was always the one who went along with me to my chemo visits so I would have someone to talk to besides Sophie. Mia and her endless waves of cheerfulness and positivity, Mia, who didn’t know that I was dying.
She knew about the tumor and that I was only supposed to have a year at most after I had been diagnosed, but after one year passed then two she stopped worrying about me dying and more about me getting better. She would go on and on about what we would do after I got rid of the tumor and for years I went along with it. It was that or give up all hope, and some hope is always better than none.
But lately, something has been different. I sort of sensed that this was the end of the road for me, that I was dying. This trial had been my last chance. It was a last-ditch effort at the end of the road to give me a few more months so that I wouldn’t have to leave Dad all alone in the world.
For years now I had pretty much lived in hospitals, knowing that each visit could be my last. I was done with the hospitals. I was done fighting this tumor. I knew I was going to lose the battle eventually. Sure, I was terrified of the thought that in two hundred seventy-three days I wouldn’t be here on this planet anymore, but what I hated more was the idea of wasting these last days in another hospital going through the chemo and constant nausea and hair loss that came with it.
I was almost ready. There was just one thing I had to do before I could go.
Madison is currently a high school sophomore at the Kinkaid School in Houston, Texas. Her most notable awards include the National Scholastic Silver Medal for her short story, A Second Chance, and several “gold keys” on a statewide level. As a passionate writer, she’s been an active member of a nonprofit called iWRITE for the past three years, promoting literacy and a love of writing.
"Inauguración del Hospital Municipal de Chiconcuac" by Presidencia de la República Mexicana is marked with CC BY 2.0. To view the terms, visit https://creativecommons.org/licenses/by/2.0/?ref=openverse
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