My Life Because of You

October 16, 2018
By Anonymous

Dear Juvenile Rheumatoid Arthritis,

You are the term that has been engraved into my soul since birth. You are genetic and you manipulate my immune system to think there is something wrong with my joints, so it attacks me causing inflammation and pain, amongst other things. I could never explain how you make me feel because no one can understand, but I can show what you are. You’re a young seven-year-old girl. She has these deep chocolatey brown eyes and long flowing hair. The girl’s round face reflects her innocence. However, her winces from pain and swollen ankles that are covered by expensive tennis shoes, reflects you. Since her birth, her mother always absorbed the compliments from the swooning onlookers on how beautiful she is with her long eyelashes that would one day hold tears of deep isolating sorrow, but the eyes of a warrior. You are the smell of antiseptic as she enters the infinite amount of hospitals and doctor’s offices. You taste like the toxic medication that chokes the girl twice a day for the rest of her life. You feel like the piercing needles penetrating her skin to devour her blood, the warm salty tears racing down her face, the constant, but throbbing, the sharp, but dull, the quiet, but loud pain that stole away her innocence. Most of all, you are the sounds you cause. You’re the “Mommy, it hurts”, “I scooch down the stairs because I can’t take the pain”, “It’s only a sprain, “Well, the swelling hasn’t gone down. Let’s put on a cast”. You’re her mother screaming, “Tell me what’s wrong with my baby!”. You’re the “If God is so great, if he really does love me, then why would he do this to me?” that the little girl screamed at her religious grandmother. You’re her sobs from the pain. You’re the taunts of the children. You are how many times I was called their little trooper. You are me.

I want to thank you for this. I’ve often thought about what I would be like if I was not bound to you because without you I would not be the person I am. I’ve become a compassionate, stubborn, and determined young lady who wears her heart on her sleeve. These traits are the key to my dream. I want to change the world, I want to help people, and see the impact I make. However, I am clueless on how to do this. I have this dream because of what you put me through. I’ve been directly affected by confusion, pain, and have no one that can tell me that they understand. I don’t want others to be put through this, so I will be that person to guide them through their journey.

For the past 9 years, I’ve had annual doctor appointments, sometimes more often and others farther apart, depending on how badly you were affecting me. I think back to 2009, I draw in a sharp intake of breath and the taste of antiseptic lingers on my tongue. As I run down the hall of the University of Michigan’s Mott’s Children's Hospital I feel the scrutinizing gaze of the doctors and my parents analyzing my flawed running. As my footfalls echo off of the silent corridor I pass the nurses’  station and their possible thoughts echo through my head. I abruptly come to a stop and dodge an unexpecting doctor, then turn around to run back towards my fate. Throughout my journey, I’ve performed this run a thousand times. It is a display of the dreaded truth that I try to hide to a prideful march of improvement and back again like a forever swinging pendulum.

Yes, I am grateful to you, but I would never wish you upon someone else. You are genetic. You could have neglected me and sprung upon one of my sisters, Kristen or Emily. I can imagine being nine and never understanding what’s happening. I could walk into a room to see warm tears leaking from Kristen’s emotionless wall from pain and ignorantly wonder if she got in trouble. Maybe, it would be little Emily and I would be old enough to know what you are. I could have had to console her when she didn’t understand her school work because she missed another day. I would wrap my arm around her to protect her from the evil of the world and wipe her tears away before she can taste the salty sorrow. I am the big sister and I will gladly balance this burden upon my shoulders for them.

You’ve taught me an immense amount of life lessons. One of the most prominent is the importance of family. When you took ahold of my life everyone was scared, especially me. They hid their fear, took my little hands, and we stood against you as a family. It was always the little things that helped the most. When you were finally given a name my grandmother, Mimmi, dove into research. She hated that I had all these medications and kept trying to find alternative relief. She even planted yellow tomatoes in her garden just for me because acidic foods are harmful to arthritis patients. Now they are my favorite.  My aunt helped me with my first injection of medication. My parents were probably hit the hardest by you. I was their first child and they had to face the fears of any new parent. I’m so lucky to have them because they have been so supportive along the way. There was also the impact of unknown family. We desperately tried to find who you came from. No one knew. My father barely knew anyone from his dad’s side, but when my great grandmother passed and we went to Tennessee for her funeral, I got my answers. You are apart of me that had no origin, but at the moment that we were saying goodbye to new family, as the cool Tennessee air nipped at our noses, we found your roots within my Great Grandmother.

When my dam of courage broke and the river of despair rushed out of my eyes and I questioned my Mimmi about why God would do this to me. We had slowed to a stop in front of the creme garage. She kept saying how she is praying for me and that God will help. I had snapped at her, “If God is so great, if he really does love me, then why would he do this to me?” She looked down and grabbed my hand, “Because he knows you are strong enough”. At the time I was just a little girl who had to grow up too fast, now I’m a strong young lady who’s still a little scared of the future, but I know I am strong enough. These words have guided me through my life. Eight years later I framed these words and they became real, I gave them to her as a Christmas present. As she opened it her eyes squinted in confusion and gratefulness. I could tell she didn’t know that these were her words, the words that were the light I could see through you. As I explained and thanked her for all she has done for me, everyone began to cry. At this moment, I was beyond your pain and enveloped into the love you brought me.

“This looks good, really good. I think we can say you are in remission”. I let out a shaky breath and a laugh. My joy spilled out of my eyes. For the first time in years, I had felt like I can breathe. I was floating. You were the burden that weighed me down, but let me go and allowed me to fly. My parents smiles radiated in my direction as we realized all of the things that seemed impossible I could achieve. Things as simple such as wearing heels suddenly became a reality. I have felt this twice since I was diagnosed, however, I’ve had to face my genetics three times. You are a battle that I will continue to fight because I will always be their little trooper.


The author's comments:

This is a letter to my Juvenile Rheumatoid Arthritis. It explains how JIA has affected me and changed my life forever. 


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This article has 4 comments.


Rose.bj SILVER said...
on Nov. 10 at 9:38 pm
Rose.bj SILVER, Plymouth, Minnesota
5 articles 0 photos 3 comments

Favorite Quote:
"Promise me you'll always remember, you're braver than you believe, stronger than you seem, and smarter than you think." ~ A.A. Milne

This is amazing writing! I also have Juvenille Arthritis, and I can relate to so many things you have said. You put all these emotions and struggles into words. When I read your work, it felt like someone had finally understood this part of my own life, even though it’s through a screen. It really is nice to know there are people out there fighting similar battles. This is beautiful writing, and I wish you the best.

cisabell said...
on Nov. 4 at 9:36 pm
cisabell, Temperance, Ohio
0 articles 0 photos 1 comment
Lexus, you are true inspiration and pillar of strength. Keep pushing forward; the world is in your hands. I know the future has great adventures in store for you. Thank you for sharing your story.

JoeIsabell said...
on Nov. 4 at 9:55 am
JoeIsabell, Temperance, Michigan
0 articles 0 photos 1 comment
Great piece of writing Lexie. Thank you for sharing.

Lexusis8 said...
on Nov. 4 at 9:48 am
Lexusis8, Temperence, Michigan
0 articles 0 photos 1 comment
I want to thank everyone for voting! As of right now, I am at the number 1 spot in memoirs!


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