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There We Were
Prologue
Our time together wasn’t long, as I recall. I just felt like we didn’t have enough time.
both of us, didn’t have enough time.
My name is Annabelle, my parents get along quite well, sometimes they fight, but at the end of the day I know they are just human and still love each other.
My mother gets into a habit of going through phases where she is too into something, for example right now she is interested in linguistics. Our bookshelf is full of foreign language books, she tries forcing it on me too. I guess thanks to that I can speak a fair amount of russian. even though I am not russian. But hey we have quite a bit of Russian immigrants that attend my high school and I can actually communicate with them. In russian!
My father is a silent one, he rarely cries, but he has a kind heart. there is not much to say about him other then he isn’t too different from any other good father.
me and my older sister Alyssa were taking pictures together outside, to celebrate reaching myself reaching senior year. I am so excited, I’ve made it this far.
I had my hair in a ponytail and was wearing my cutest outfit, I smiled for my sisters pictures. she wanted to be a photographer I’d always support her.
in conclusion my name is Annabelle I am currently 17 and 2 months, my older sister is Alyssa and we live a fairly normal life.
but something changed my daily life
and ended it for good.
when I went to school, my friends were there to greet me. they smiled at me and we walked to the gym, every year my school has an assembly for the first day to explain the same rules, regulations, and to hear the same thing every year. But I guess it is new for the freshman.
I almost fell asleep listening to their same lecture, word for word it was the same as last years orientation.
after what seemed like hours it ended, I stood up and stretched, but what happened next was unexplainable, my felt dizzy and my legs gave out underneath me, with a thump I fell down, and what happened after that was more scary, I felt my eyes uncontrollably shake in the back of my head, what was happening? I couldn’t move or respond but I felt my body violently thrashing. all I could do was wait for it to be over, before I went out I heard my friends screaming.
I woke up in the hospital and after a couple of blood test I was wheelchaired out to the waiting room where my mother was waiting for me.
“are you okay? mommy was so worried!” I smiled at her showing her I was okay, the ordeal was scary but at the end of the day I was okay. she checked me out and the doctor told her that my blood test results will come back soon. a few days later they came back normal, and we went on to our normal lives.
One day I was looking at the kitchen clock, I started seeing double of everything for just a few minutes, I didn’t want to worry my mother again so I kept it from her, my eyelids slowly dropped down and I struggled to get them up. after a while though it went back to normally.
“maybe I should go to sleep now” I told myself.
over and over, I told myself I was just tired. but the more things happened the more it couldn’t be explained. I started having balance issues too, I had to walk very slowly, it was so embarrassing I looked like I was drunk or something. because I couldn’t balance properly I had a wide gait, and I moved awkwardly, I cried a lot externally and internally, why was this happening to me?
I ended up in the doctors office after my parents were finally fed up with the mystery. the doctor seemed fairly new to be a doctor, very young looking, maybe he just started private practicing. He seemed nice though as he greeted me with a warm smile. my mother and father who were both present started explaining all my signs I’ve been having, and I had a chance to explain my symptoms. he gave me a neurological exam.
During the neurological exam, the doctor asked me to do various things, I felt uncomfortable doing all these things, after this tests were finished he issued an MRI, they would be taking an MRI of my brain. the doctor said “I promise it won’t hurt at all” all I could do was trust him, after all he didn’t seem like someone who would lie.
One day when I got home from school, I had a horrible headache, it was devastating, all I could do was lay down, I’ve been getting headaches a lot lately. I went through the same routine, I would get a headache and then I would throw up, but after throwing up I would be relieved the pain in my head would go away and I would feel better. finally we got a phone call from the doctor.
the mystery was solved, Brainstem Glioma was my diagnosis result. due to the area of the tumor no surgery was available, the brainstem is very important and sensitive, so they didn’t want to operate. I was quickly admitted to the hospital. at the hospital, that is when I met her.
when I arrived to my room I’d be staying in during chemotherapy and radiation therapy, I laid eyes upon a girl, who looked younger than me. my best guess is 16 years old. she looked really optimistic and her eyes had courage in them. in her eyes she looked like she wasn’t really sick, but that wasn’t the case. I saw a wheelchair by her bed and some string sitting on her bed table.
“Hi I am Becca, would you like a bracelet?” she smiled at me, and told me her new hobby was making bracelets. I could not help but reach my hand out for one of the already made bracelets, they were all so cool looking. she moved very slowly when giving me the bracelet. my hand was also slow and staggering but much faster than her movements.
I was worried that my hair would fall out during chemo, I loved my hair, it was long, strawberry blonde, and I always took care of it as carefully as I could, but before I knew it a couple months later all my hard work was gone. Becca’s hair was fully intact though, she didn’t do chemo because her disease wasn’t cancer.
To explain things properly, once again my disease is a brainstem glioma. It is basically a tumor on your brainstem, your brainstem is the part of the brain and nervous system that controls breathing, heart rate, hearing, seeing, talking, walking, and also eating. all those functions are controlled by the brainstem, and some of those functions are also controlled by the cerebellum too. thanks to this tumor on my brainstem I am slowly and surely losing my abilities.
I tried my hardest to not google my disease. I was scared of reading the prognosis, I didn’t want anxiety from it. I thought to myself, I would rather be happy and oblivious to my own death rather than count down in my head. but five days after I was diagnosed I cracked, and googled it.
according to the internet, my type of brainstem glioma was terminal, well, both types are terminal but my especially, my eyes grew wide in fear reading this information. Brainstem gliomas have two types, my type DIPG is a high grade fast acting tumor. the prognosis is around a year, but some survive longer than that. I am scared, every time I think of the future I cry.
I would easily lash out at my parents. I can remember my mother telling me “it’ll be okay, things will get better if you try to get well” I yelled at her, and screamed with tears rolling down my face that I didn’t want false hopes. she left and shut her room door, but I could hear her crying through the door, I felt bad.
for the next few weeks I was a horrible wreck, my eyes were red from crying everyday and my throat hurt from raising my voice, I was a very angry person, until I met Becca in the hospital, who I told you about earlier.
After spending my first few days in the hospital I learnt a lot about my roommate.
she is 16 years old, and she has a disease that is causing part of her brain to atrophy. I have lost quite a bit of my motor skills, thanks to the location of my tumor, but hers is worse than mine. understanding what she is saying is difficult. and she has to get around in a wheelchair. when I shook her hand, it was shaky and slow to meet mine. Her ataxia is bad too. even if she stands up holding onto something, she will go down with a thump because she cannot carry the weight on her weak feet. she is very smart though, her disease doesn’t affect the mental status at all, is what I was told by her parents when I first met her. I sometimes see her crying when she thinks I’m not looking and I wonder what’s going on inside this disabled girls clear mind?
Becca likes to write poetry and often shares them with me, one poem in particular really stood out to me, it reads.
A BIRD FLEW IN THE SKY
I REACHED MY HANDS OUT
TRYING TO FLY WITH THEM
IN MY DREAMS I COULD SOAR AND
ROAR.
HOWEVER WITH THE OPENING OF MY EYES
IM SNAPPED BACK TO REALITY
THE WHEELCHAIR GREETS ME.
IN MY REALITY I CANNOT FLY
I CANNOT SOAR
I CANNOT EVEN DREAM
BUT AT LEAST I’M ALIVE.
Her poem brought tears to my eyes, I felt like reading her poems makes me understand her better. it also reminded me that there are people out there with diseases worse than mine, with even worse prognosis than me.
we both discovered we have a lot in common. more than we thought. We enjoyed the same exact bands, and my mother brought me a headphone jack so we could listen to the same music on my ipad without disturbing the rest of the hospital. we laughed and laughed together, very happily. although her laugh was barely audible I could tell she was laughing. I felt really bad for her though, thanks to her disease even basic expressive abilities have been stolen from her now.
5 months later both our situations deteriorated, I was relying more and more on my wheelchair and my balance weaker and weaker. but even after trying her hardest in physical therapy which encouraged even me Becca could no longer walk, she was permanently in a wheelchair and could no longer attend physical therapy. she’d barely whisper too, even with all the energy she had, a sound barely came out, her doctors installed a special pad on her wheelchair that will speak if she types in the response, it’s just a slow process as her trying to speak it out but it’s easier to understand her with the computer.
I remember in gym class when I was healthy I would always complain about running the mile. I would also complain about doing the warm up runs just like everyone else would. Kids would start running while groaning at their gym teachers. but now, what would I do to go back in time? to a time where I could run? if I were healed I would run a gazillion miles until I fell to the floor unable to run anymore and sweating.
I remember complaining about essays too. If I could write properly again I would write all the essays in the world! I remember when I had courage too. now whenever I see someones heartless glance I shrink up a little. I heard one person say behind my back that wheelchairs shouldn’t be allowed in public. they thought it was because they took up to much space. I felt horrible after that. so are disabled people just supposed to stay cooped up in their own homes, without any fun? Just because they are something they didn’t chose to be? what are we animals? thats not fair thinking!
One day me and Becca were enjoying our meal when I choked. I guess I am losing my swallowing abilities now. I hope I don’t choke a lot now. I have seen Becca choke quite a bit and the doctors will come and bring some tool that they stick down her throat and the tubes suck the food she eats, that in her state now is mostly soft and liquidity because that is all she can eat.
That one day came, and I remember it clearly. Becca had fell into a coma. her disease had taken a turn for the worse. she was moved to another room and her family was with her. I was allowed into the room to say my final goodbyes with permission from her parents. it has hard to properly say goodbye to Becca though. since she was in a coma, she couldn’t hear me talking to her. sitting by her bed, and talking to her as if she was awake.
I felt like I had to stay strong, but I just felt like crying, Becca had taught me a lot through the short time we had together and she felt like a best friend. she taught me to try your hardest at getting well, I used to have no hopes and hate physical therapy and chemo. but now I anticipate it so I can get well. she taught me that we are all human, I will no longer judge someone different from me! she taught me other things too, like making bracelets, and writing poems, many different styles. I must say thanks to her I can write a proper haiku. she also taught me I could still love, even in my state now. I had the ability to love.
Becca didn’t even feel the warmth and touch of her fathers hand nor her mothers, they both wiped tears from their cheek and I couldn’t help but wonder, is the one time my father going to cry going to be when it’s my turn? I’d feel bad even after death for being the person to make my father cry.
a few hours later a nurse and Beccas parents came back to my hospital room to collect Becca’s stuff, I was informed she was taken off oxygen. Now who would be my support? now who could I love just as much as I loved Becca? I felt happy around her and inspired to get better and now she is gone. I wrote a poem expressing my feelings.
WHEN I CLOSE MY EYES
THE DARKNESS ENGULFS ME
I BELIEVE THAT DARKNESS
WILL SOON BECOME MY REALITY
BEFORE LONG
I SHALL JOIN YOU.
eventually I got too scared to sleep, I refused to sleep, but eventually I’d wake up into a brand new morning wondering, when did I fall asleep? finally my time came, the disease took its course, I remember my mother stroking my head as I closed my eyes. I cannot remember what happened after that anymore, but I felt at peace. but I do know one thing that happened.
We were reunited, and we could freely move around, seeing each other in healthy states we could be together forever.
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