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Jessica’s Story (Chiari Malformation)

Jessica's Story Chiari MalformationI fight for dreams. When I was diagnosed with a Chiari malformation/Basilar invagination, all my dreams suddenly became impossible–my dream of becoming a black belt, of becoming a better skier, and of living the life I wanted to live. Hope overcame me when I had a decompression surgery and a fusion of my skull to my C2 vertebrae on April 6, 2011. Now, not only have I been able to accomplish my dreams, I have been able to dream bigger, try new things, and hopefully maybe even inspire other people with Chiari malformations that they don’t have to let go of their dreams and that nothing is impossible.

I have two scars. These scars are not ancient, like one that has faded on a war veteran’s face or fresh like the scraped knee of a child who just learned to ride a bike. My scars are old enough to reflect upon, but not so old as to be forgotten. One scar, smooth to the touch and faintly elevated, resides on my right hip. This scar is deep red with a curve which resembles the sun grazing a hill on the horizon at sunrise. The other scar extends from the crest of my head down to the base of the back of my neck. Bumps and lumps surround this scar, and it is barren–the hair that once grew there grows no longer. These external marks appear as fleshy defects, but they are so much more, as they are a reflection of the deeper me.

I felt my heart stop when I first heard the words, “Your MRI came back, and it was irregular.” Tears welled up inside my eyes as my mind flooded with questions. Why me? Am I going to be okay? What even is a Chiari malformation? “Well,” my doctor started, “your condition is very rare. It is when part of the cerebellum is located below the opening at the bottom of the skull, putting pressure on the brain stem.” He explained, “You also have a Basilar invagination, which means your skull is unstable. This is a very rare condition.”

“Can I continue with my training?” I asked nervously, half knowing what he was going to say. I had been practicing martial arts since I was eight years old, and at fourteen, I had devoted nearly half my life to my dream of earning a black belt–a dream that was slowly moving farther away from reach as the doctor explained. “I don’t think that training is such a good idea, as your head is too unstable.” Tears spewed out of my eyes as I struggled to breathe. The doctor started to speak again, “Although, we could do a decompression and a fusion, which will stabilize your head and relieve the pressure caused by the Chiari.” The pressure on my lungs was relieved slightly as I saw hope.

Months were devoted to researching my condition and my options. My parents dragged me to countless neurosurgeons. Two options emerged: treat my condition with this surgery with the hope that I would return to life as it was, or avoid the operation–with no assurance it would not be vital later–and lead a life of inactivity and insecurity. Agony over whether to act now or wait and see filled our home for weeks.

After one particularly distressing discussion with my parents about my circumstances, I took a walk and considered the big decision. What should I do? Should I have surgery? Should I wait and see? I gradually came to a decision. I must take the leap now. The surgery terrified me, but I felt I would slowly wither away in the alternative life of fear and uncertainty. Soon my steps grew mighty, carrying me farther away from my doubts until I was forcefully marching down the street with fire in my eyes. I will overcome this. I will get the surgery. I will heal. I will ski. I will get my black belt. At that moment, my mind became a one-way freight train, full of resolve on a journey of conviction.

My week at Columbia Presbyterian Hospital and the following six months were a blur. Nevertheless, I felt I was slowly but surely swimming toward the surface in my ocean of despair. Then one day, I was told, “You are clear for all physical activity, Jess.” The words danced out of my doctor’s mouth like the first notes of the most beautiful symphony I have ever heard. I wasted no time. I biked, hiked, swam, and trained that week. It was a slow process at first. I had to be eased back into training, then competitions, and at last, preparation for my black belt. After I came home from practice, dripping in sweat and satisfaction from a hard work out, I looked down at my right hip and smiled. I could finally see the sun coming over the hill at sunrise.

I was now training my hardest, and I did have to learn to fight differently because of my Chiari. There were moments of frustration and doubt, but I knew I had to try my best. I had almost lost my chance at my black belt, so, I had to give it my best shot. Two years earlier, I was sitting in a doctor’s office, wondering if returning to karate was even plausible, then sitting in a hospital bed, wondering how I could become the same fighter I was before. The truth was I wasn’t the same fighter. The Chiari had made me stronger. I was more motivated, confident, fearless, and proud of where I had come from. As I walked into the black belt test, I was ecstatic just to be there. It felt like a breath of fresh air. I fought, and I earned my black belt. One week later, I received my black belt, surrounded by my friends and family. Two years earlier, this moment seemed impossible, but as I looked around at my family and friends, I was filled with relief and joy.

I have two scars. While others may view my scars as unattractive imperfections, I see them differently. The bumpy road on the back of my head is a badge for the struggles–physical and emotional–that I have traveled on my journey to pursue my dreams. It reflects my strength and endurance. The sun grazing a hill on my hip represents the promise of wonderful things to come. They define who I am in a way that no other feature ever could. It’s been a long road, but I wouldn’t change any of it for the world.

Jessica
New Jersey
Submitted 01/29/2016

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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8 comments

  1. You are an Amazing and Brave Girl Jessica!

  2. Jessica-I came across this on Facebook. Your picture and your beautiful story somehow came up on my feed. What a difficult and trying time that must have been-receiving the news of your condition and then having to make the decision of what to do. I am amazed by your courage and strength and the wisdom you have gained from this experience. I am so happy you are where you are now-strong, confident, and happy. Exactly where I knew you would end up! You’ve grown into a beautiful, smart young woman and I am proud to say I knew you when you were in second grade! Love-Ms. Yoon

    • Ms. Yoon,
      Thank you for reading my story it really means alot to me! What a coincidence! It was a difficult time, but I learned a lot about myself and it made me stronger and propelled me forward to reaching my goals and dreams, I wouldn’t change it for the world, because its made me the person I am today! Thank you! I hope you are doing well!
      Love,
      Jessica

  3. Your story was really touching. I was diagnosed wit Chiari malformation wen I was 7 years old. The doctor told me I had it bad and I’m lucky I’m not paralized yet. And then I went thru the same surgery u did. I have a scar on the same spot. On the back of my head/neck. I’m 16 now and I can do most of the stuff I use too. It affected my hands but I still use them like everyone else I just find short cuts. I thank my doctor for helping me cause From this point I can only progress

  4. My daughter is facing this surgery. Thanks for your inspiration

  5. I just received the diagnosis for Chiari Malformation 11/28/2016. I remember that day so vividly. Reading your story has given me hope that things will get better. My life is not over! I will be seeing a neurosurgeon tomorrow. I am nervous but hopeful. Thank you so much for sharing your story Jessica!!

  6. Hi an amazing story and an amazinhg young lady, my son had decompression surgery just over 2 yeras ago, He is now almost 7 years old and as parents we are worried what sports he should start to do.

    He has shown an interest in Karate but we were worried he may not be able to do it due to his surgery.

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