My New Normal This work has been published in the Teen Ink monthly print magazine.

I wake up to a stiff sensation in my legs, just like every morning. I turn my head, pushing past the tightness in my muscles, to check the time. It’s 7:31 a.m. I got a full six hours of sleep, something that hasn’t happened in two months. Minutes pass before I feel like I can move my joints. Taking a deep breath, I push myself up on my elbows and ignore the pain that this pressure causes. The birds are chirping in tune, which makes the rays of sunshine seeping in through my window seem that much more beautiful. I keep myself focused on the beauty as I swivel on my bed so my legs will dangle over the edge. That’s all you’re good for, I think, dangling.

I shut my eyes and remember what it was like to just get up and go in the morning. Memories are my lifeline. I try to remember what it was like to feel normal, to feel good instead of just okay. Remembering my old life and the joy that filled it gives me something to hold on to, something to aspire for. I know one day I’ll feel that way again; I just have to fight for it. Every now and then one of my friends will go into remission, and it never fails to sends a surge of hope through me and my family. If it’s possible for them, maybe it’s possible for me. I just have to fight a little longer. Luckily, I’m no stranger to fighting.

 

• • •

 

Last year, during a doctor’s appointment, I learned that my morning routine wasn’t normal. “Do you feel stiff in the morning?” my doctor asked.

“Yep,” I answered. When I received a strange look, I wondered if I had said something wrong.

“You know it isn’t normal to feel stiff in the morning, right?” he asked.

I raised an eyebrow, wondering if he was just messing with me. For as long as I could remember I had felt stiff in the morning; I assumed everyone did. I hadn’t minded the stiffness, but I did mind when the feeling lasted all day.

Soon after, I was diagnosed with lupus, an autoimmune disease that affects the cells and tissues of the body and can be fatal.

 

• • •

 

I shove off my bed and slide into the wheelchair that’s docked next to it. Gripping the wheels, I push myself to my dresser. When I was eight, before I got sick, brushing my hair was torture. I’d only do it once a week when my mom cornered me and forced me to stay still. The knots and tangles were so terrible I could hardly bear to drag the brush through my long brown locks. Now I grip the handle and pain surges through my fingers. I have to take a deep breath before I lift the brush to the top of my head. Immediately I feel my shoulder tingle and my arm go weak. I can hardly bear to drag it through my hair.

I wheel myself out into the hallway, pushing around the shoes my brother carelessly left lying around. I roll into the kitchen and maneuver around the island. Pictures of my family and me hang on the walls. Nine-year-old me had absolutely no idea. One day she was worried she wouldn’t get all her stuffed animals to fit on her bed, then the next she wondered why her mom was sobbing so violently.

Lupus took over that suddenly. I was only nine, but I was convinced I was dying. Red, painful bumps covered my body. My joints locked, and any movement or pressure caused incredible pain. People on TV died so gracefully, typically ending up on the floor or in a bed with their eyes closed. Every day I woke up with the same thought: When will my eyes close? On days when a new symptom appears or I feel worse than usual, that thought creeps back into my mind. Some days I wonder if I should write a will, just in case, but I always come to the same conclusion. I refuse to prepare for death because I refuse to allow my young eyes to shut.

I position myself up against the counter and stretch for a banana. The stabbing pain in my spine tells me to abandon that breakfast choice. I head for an easier option. The yogurt sits on the middle shelf of the refrigerator. After I grab a container and a spoon, a crackling sensation in my head reminds me that I’ve forgotten something important. I quickly grab my pills and down them with a bottle of water. Mom walks in just as I gag on my medicine. I try to scrape my tongue with my teeth. I’d rather eat a fish covered in spinach and soaked in blue cheese dressing than have to taste prednisone. It gets the job done, but I still pray I’ll go into remission, if not for any other reason than so I never have to put those tastebud-killers in my mouth again.

“Taking your pills?” Mom asks, even though she knows. I nod, too busy chugging water to answer.

“How are you feeling?” she asks. “You look kind of pale.” It’s an obvious observation; I’m allergic to the sun.

“I’m fine,” I say after taking a gulp of air. She doesn’t know what’s really going on inside my body, but neither do I.

This work has been published in the Teen Ink monthly print magazine. This piece has been published in Teen Ink’s monthly print magazine.






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This article has 5 comments. Post your own now!

grammylady said...
Nov. 19, 2014 at 8:25 pm
YOU are our precious "baby girl".  Don't care how old you get...still our girl.  We are so proud of you - ALWAYS !  We, along with you, continue to pray for a remission and complete healing. 
 
heycallmemoriarty said...
Jul. 8, 2014 at 11:59 am
We have to talk about it sometime I really love Sherlock? How about Doctor Who? I hope you go into remission one day too, I will pray for you <3
 
ThroughButterflyEyes This work has been published in the Teen Ink monthly print magazine. replied...
Nov. 13, 2014 at 4:54 pm
I'm sorry I didn't see thsi until now! I would love to talk about it! I looove Doctor Who! :) Thank you so much for your prayers<3
 
heycallmemoriarty said...
Jul. 3, 2014 at 8:51 pm
This is in the nonfiction section, so my guess is that you have Lupus. I am so sorry. God healed my mom from Lupus, and she has talked about the disease. I am so sorry. Please stay strong, and I hope a cure is found to help relieve your pain. -heycallmemoriarty
 
ThroughButterflyEyes This work has been published in the Teen Ink monthly print magazine. replied...
Jul. 7, 2014 at 7:12 pm
Yep, I do have Lupus. I am so, so happy that your mom was cured! I've had it since I was nine, but I'm still praying to go into remission. Maybe someday :) Thank you so much!<3

Also, I love Sherlock! :)

 
 
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