On the Edge of Tomorrow, page 11
Before I can even ask what that means or where I am, two nurses help me onto a bed and help me take my t-shirt off. My cheeks redden as my pale chest and stomach are revealed, my bra the only thing covering my upper body.
Taking small patches, they begin to attach little, metal disks and electrodes to my skin. As the cool metal is pressed onto the insides of my arms and multiple places on my chest, I wince, feeling like a science project.
Once the disks are all attached, they give me a flimsy gown to wear and I lay back on the pillows, exhausted. At least I don’t feel like I’m going to puke anymore.
I start to close my eyes but hear a strange scratching sound that keeps me awake. Pressing one of the buttons on the remote, I raise the bed until I can see the source of the noise.
Sitting on a table is a large machine with a metal arm drawing on a piece of paper. I think back to what the nurses were saying when they were applying the electrodes and assume that this is the machine that measures my heart’s activity. For now, the metal pencil is only making small, tight movements and I hope that’s good.
“So, Ali. What is your favorite thing that you’ve learned in history recently?” Mom asks randomly.
I furrow my eyebrows.
Where did that question come from? Why does she even care?
I realize she’s trying to make small talk and keep my mind occupied while the test is being administered, but I can tell she has something else on her mind that she doesn’t want to think about.
“Umm, I’m not really sure. I’m kind of tired.” I yawn, doing my best to stretch without popping any of the stickers off my body. I’m getting really sleepy and just want to close my eyes.
Please just let me sleep
“Okay baby, you sleep. I’ll wake you if the doctor has any news.” Mom smiles, her dark eyes sad as she pats my hands.
ABOUT HALF AN hour later, I realize that I actually fell asleep and I wake up to my mom and Dr. Klein arguing.
“I don’t care that you’ve never used Keppra before,” Mom says, hissing like an angry cat. “Allison used it and was seizure free for years. Now that you’ve put her on this generic brand, she keeps having seizures. Obviously, it’s not working. You need to write me a prescription for Keppra or I’m not leaving this hospital.”
Dr. Klein sighs. He’s probably been fighting with my mother for a long time. “Fine, I’ll write you the prescription and call the pharmacy to get it ready for you. But I want you to know, this pill doesn’t come cheap and the prices have gone up significantly since Allison last used it,” he says, writing down the necessary order in his indecipherable script.
“Price doesn’t matter if it means helping my daughter. When will the EKG be done?” she asks, doing her best to keep her voice low to avoid waking me.
Too late for that, Mom
The doctor walks over to the scribbling machine, reading the results easily. “Her heart activity is normal so that’s great news. The seizures haven’t affected it so we can focus our treatment on the brain. I’ve upped her dosage to 1000 mg in the morning and 1500 mg at night. Does that sound about right?” he questions.
“Yes, that’s a little stronger than what she used to take, but she wasn’t having this many seizures so close together back then. We’ll start her on the high dosage and see how she reacts,” mom explains, sounding more like the doctor than Dr. Klein.
“That settles it, I suppose.” Dr. Klein clears his throat and makes his way toward the door. “Now that she’s been stable for a few hours and her EKG scan is good, you can go home,” he says, dismissing us and exiting the room without another word.
My mom nods as the doctor leaves and pulls out her cell phone to call for a ride. Nick had to go back to work so this time my mom calls Jenny.
I half-listen to her conversation as I close my eyes again. All I want to do is sleep for a whole day, wake up and have all of this be a dream.
My mom smiles and hangs up, tucking the old flip-phone back in her pocket, and sees that I’m awake.
“Sorry I woke you. Jenny’s on her way to come get us. She’ll be here in five minutes. You want to get your shirt back on, and we can meet her in the lobby?” she suggests, bringing my clothes over to the bed.
I nod silently and brush my messy hair out of my face as I shrug out of the thin gown. It crinkles loudly as my mom tries to fold it up.
What a waste of effort. They’re just going to throw it out anyway.
Once my clothes are back on, we leave the room in another wheelchair and wait for Jenny to arrive in the lobby. I can see the parking lot from here and watch for her small, red car to appear.
As I’m staring blankly out of the clear doors I hear a surprised voice behind me.
“Wow, you’re here again, honey?” an older nurse says, coming up behind me, a clipboard in her hands and a frown on her face.
“Yup,” I answer, not really sure what else to say.
Sorry I couldn’t stay away?
“Well, you go and get better, honey,” the nurse says, patting my coat sleeve and then walks away.
Like I’d try to do anything else? Nah, I think I’ll be back. I love spending my whole day here hooked up to machines
I shake my head and take a deep breath. I need to get my sarcasm under control. I’m just so sick of all the pity and stupid encouragement. I’m not dying or trying to win a race. Just leave me alone! I breathe deeply again and try to relax. Getting upset won’t help.
A little more than five minutes go by, and I see the car pull to a stop in front of the emergency doors.
“Mom, she’s here,” I say, calling to her where she’s standing at the check-in desk.
Mom waves goodbye to the nurse and crosses the lobby to where I’m waiting. As she wheels me out of the automatic doors I let my head hang as a sense of déjà vu washes over me.
Twice in less than a week
All I want to do is lie down. Get away from everyone and everything. And a shower, I desperately need to wash the hospital smell off me.
I look up and see Jenny hesitate behind the wheel for a second, wondering if she should get out and help or just sit there so she doesn’t get in the way. Before she can ask, my mom opens the back door and helps me slide in, my favorite blanket waiting for me in the back seat.
“Hey, guys!” Jenny’s cheerful voice greets us. “Can I help at all?”
“Nope, you’re fine right there,” Mom tells her kindly, pulling the seatbelt across my chest. “Thanks for picking us up.”
“No problem. I called and told them that I was going to be a little late tonight,” Jenny explains, happy to help.
Soon, we’re all in and Jenny pulls away from the hospital as a chill runs through me.
Please, let me never go back there I pray in my head as I watch the gray sky above me.
“So, do we need to go anywhere? Pick up medicine or anything?” Jenny offers. Her happy voice surrounds me like a pink cloud, and I can’t help but smile.
“No, I just want to get Ali home and have her relax,” Mom explains, glancing back at me. Jenny nods and starts humming along to the radio after complimenting my blanket.
How is she always so happy?
A dark voice answers my thoughts.
Because she doesn’t have seizures. What does she have to be unhappy about?
I glare at Jenny from the back seat, wishing that I could trade places with her. She smiles at me in the mirror, and I feel my anger and hostility melt. It’s not her fault my brain stopped working right. She doesn’t deserve the blame.
I smile faintly back and ask her how work’s going, glad to be the one to ask questions about someone else for a change.
“Oh, you know, same old same old.” She laughs, pulling into the driveway, “Lots of cheap people raking up high bills and tipping me five percent.”
Mom and I laugh, loving the way Jenny complains about her job. She is a waitress in town and always has a crazy story to share about her guests.
“Come on, Ali. Let’s get you into the house.” Mom laughs, gripping my elbow and slowly guiding me forward once we arrive. Jenny collects the bags and follows behind us, still humming.
As we walk inside, chaos greets us as all three dogs and my two brothers spill into the kitchen.
“Hey, Ali!” Michael greets, waving at me while Patrick smiles brightly.
My dad lumbers into the kitchens after everyone else and waves his arms back and forth to clear a path.
“All right, all right, they’re home. Now take a hike!” he hollers at the barking dogs as he makes his way toward me. “Good to have you home again.”
“Thanks, Dad,” I whisper, trying to hold back my tears as he wraps me in a tight hug. “Come on and lay down. I got the couch all ready for you.”
Dad leads me into the living room where my blue elephant is waiting for me. I don’t care that I’m almost seventeen. Just seeing my old stuffie makes me feel better.
“Come on, sit right on down here,” my dad says, gesturing to the cozy spot he made up for me.
I smile and relax into the cushions, finally content.
My mom puts on some country music, and Jenny takes a seat in the rocking chair and looks over at me. She bites her lip, and I bet she’s trying to decide whether to let me rest or continue our conversation. Thankfully, she remains quiet, and I close my eyes and listen to Carrie Underwood sing about a big twister ripping her world apart.
Sounds about right
My twister is more like a black wave.
Patrick walks into the room and starts talking to Jenny about his recent Lego sculpture, showing her pictures he took on his DS. “Do you want to come see it?” Patrick asks, pointing to the ceiling.
“Sure!” Jenny laughs. “How about we go in a few minutes?”
“Okay.” Patrick nods, showing her a funny YouTube video in the meantime.
“Hey, Jen?” Mom calls from the kitchen.
“Stay with her, okay?” Jenny asks Patrick, “Coming!”
“How was your morning, Pat?” I whisper once I hear Jenny exit the room.
“Oh, I thought you were sleeping,” Patrick says, his voice shifting from high to low as my question catches him off guard.
“Nah, not really, just closing my eyes,” I tell him.
I take a deep breath and feel the electrodes still stuck to my skin. As Patrick tells me about his day, I carefully start to peel off the sticky disks like tight Band-Aids.
“You know, I can rip them off really quick if you want,” Jenny jokes as she comes back into the living room, an ice pop in her hand. I wince and glare at her as I slowly pull another one off my chest.
Ouch, that one really hurt
“Here.” Jenny holds out the ice pop and grimaces. “Those look really painful.”
I tilt my head to the side and squeeze my eyes shut as the one on my inner arm yanks the fine hairs. “Umm, ow, yeah, some of them are,” I reply, shaking my head. “But this is the last one so… Ah, done!”
I stack the dozen or so pads in-between my thumb and index finger, the once cool metal now warm from my body heat.
“Okay guys,” Mom says, coming over to check that I’m still okay. “We need to let Ali rest. Go play in your room with Michael, okay Pat?” Patrick nods and waves to Jenny.
“See you later,” Patrick calls and then rounds the corner out of sight.
“Bye, Patrick.” Jenny waves back and turns toward Mom. “Did the doctor finally put Ali on Keppra?”
“Yes.” Mom sighs, rubbing her eyes behind her glasses. “But he only wrote me a three-month prescription. I’m going to pick it up now. Would you mind staying here while I’m gone and watch everyone? Rob just left for work,” she asks guiltily, knowing Jenny is already late for her job.
“Yeah, sure. I found a good book when I was here last time and was looking for an excuse to read it again.” Jenny laughs, settling deeper into the chair.
“Thank you.” Mom smiles gratefully. “It’s only available at Walmart so I’ll be gone hopefully no more than an hour. You’ll call me if anything happens?”
“Of course,” Jenny replies. “You go.”
My mom nods and thanks her again before kissing me goodbye and grabbing Jenny’s keys.
I want to tell Jenny thank you as well, but my eyes are heavy and the blankets wrap me in a cozy cocoon where seizures and blackouts can’t reach me. I hear the front door close and am out before I hear the car start.
5
THE UNCERTAINTY OF TOMORROW
IT’S BEEN A week since my last seizure and as my mom predicted, the Keppra is working much better than the generic kind.
For the last few days, I have been limited to my bedroom and the living room, treated like a spoiled princess whenever I need something. It’s not that my parents like waiting on me hand and foot, they’re just scared that if I overexert myself by going back to my normal routine, I’ll relapse and have another seizure.
So far, the medicine is working, keeping my brain functioning as it should but my mom won’t listen to me. The pills may be working but taking it easy is important as well.
The stack of DVDs that I’ve entertained myself with is piled high on the edge of the coffee table and every time Nala comes in to see me, her long, bony tail smacks them off, sending them clattering to the floor.
The first time it happened, my mom came sprinting in, almost slipping on the area rugs and crashing through the window. But now she has become an expert in thumps and bumps and can distinguish the sound of my body hitting the floor versus a dog getting off the couch or an object falling.
At first, it made me stir crazy as I was forced to sit here all day doing nothing. Even reading was a no-go. Then, after a while, I just gave in to my mom’s wishes and let my body and mind relax and so far, I am doing really well.
One night, my mom said it was okay and we all played Big Bang Theory trivia and I found that I was able to recall the episodes and answer the questions.
I’ve still been taking it slow but eventually I’ll prove to my mom that I can read a book or concentrate on my school work again without blacking out. For right now, she and I are still roommates, a fact that my dad appreciates because he gets the bed all to himself and doesn’t have to sleep with dog breath blowing in his face. But I can sense how badly everyone wants things to go back to normal and I can’t agree with them more.
It’s said that humans hate change, and I am certainly one of them. I would give anything to have my room back, have my life back, my head back. But until my seizures are under control, I have to deal with the constant questions and watchful stares my family plagues me with because they’re only trying to keep me safe.
Now that my medicine seems to be working, I’ve stumbled upon a new fear that my parents have been whispering about.
It turns out that Dr. Klein was right about the price of the Keppra increasing.
For the small three-month supply, my parents had to pay $2800 out of pocket after the insurance paid for the other half. When I first heard them discussing their options of how to pay for it, I offered to give them my dog-sitting money. I had about $700 saved up but my dad smiled sadly and let his shoulders sag.
“No, honey, you keep your money. You worked really hard for that and we want you to save it for something you really want,” he explains, his large, brown eyes tired behind his wide glasses.
I try to tell him that I want to use it for my medicine. That I want to use it to make myself better and to stop being such a burden on their lives and bank accounts. I know how tight money is, and even though they don’t say it out loud, I know that we’re running out of ways to afford my medication.
I stare into my little box where I’ve stored the money Amy paid me for watching her dogs and wish that I could somehow deposit it into my dad’s bank account. He’s started picking up extra shifts at the warehouse, and my mom is trying to find more kids to fill the empty spaces in her daycare. Frustrated, I throw the heavy box to the floor and watch as the bills spill out onto the carpet.
I have money sitting right here, yet they refuse to use it.
I lose myself in my thoughts. I think back to last month when everyone was carefree and happily planning for Christmas. Now that’s all gone because of me and there’s nothing I can do to fix it.
Maybe I won’t have any more seizures now that I’m back on the right medication. Maybe they’ll filter into my bloodstream and pick back up where they left off five years ago and my body will magically heal and there won’t be any need to extend my prescription.
All these thoughts and fears and what ifs race through my mind but for all my big thinking, not one viable solution comes to me.
I don’t want Christmas morning to come and see nothing under our tree. My brothers deserve a happy Christmas filled with toys and cookies and my parents shouldn’t have to worry every time they swipe their card for groceries or gas.
I just wish that everything could go back to normal. But it can’t and that’s the greatest fear I have—that my life and the life of my family will never again be easy or simple.
My life with epilepsy is difficult and scary but it doesn’t just affect me. I pray that one day the seizures will leave me alone for good, and I can watch a scary movie or go into a fun house without fear of reacting to a strobe light or surprising noise.
I want to be able to care for my little brothers when they’re sick, not the other way around. I want to be strong and independent and live a life I can be proud of.
Epilepsy may have a power over me right now, but it doesn’t control me. Even though I may bend to its will, it cannot break my spirit and keep me from dreaming about life after the blackouts.
Life with epilepsy is draining, exhausting, and frightening, but I am strong, and I won’t let it scare me away from living.
I still plan to go to college, hang out with friends, and eventually drive a car. They are such simple dreams, ones that most people overlook and take for granted, but not me.
Epilepsy has shown me what is important in life and makes me appreciate it even more each time I come back from the blackness and open my eyes. I know it has to get worse before it gets better, but I am never going to let go of the small ray of hope that burns strongly within me. And soon, one day, I know I will be free.
