Why I View My Chiari Malformation as a Blessing, Not a Curse
To my dearest Chiari Malformation Disorder,
I’ve lived with you my whole life, yet you didn’t affect me. You were dormant for so long, and I was so happy to live my life without a problem. I actually didn’t know about you until I was 14, and it was an accidental find. Why didn’t I decide to push them to repair it? Why didn’t I realize ahead of time that you were the problem, not hydrocephalus or cranio-facial dynstonia?
You made me to have three extra surgeries that ended up being unneeded. You made me get a shunt revision I really didn’t need. You made me live with that shunt for several years, until the company finally recalled it. You made me go to another hospital to revise said shunt because it didn’t need to be placed in my head to begin with.
You nearly took away my life. I struggled to breathe. I struggled to walk. I completely lost the ability to eat. I lost so much weight from you. I was pale and barely able to move because of the pain. And I was maybe a week from death when I finally had my surgery to remove you. You made me to miss out on so many high school opportunities. I had to miss out on my junior year completely. I had to miss out on a lot of my senior year. I had to beg my principal to allow me back as a senior, not a junior. I had to fight to graduate on time. I had to miss out on so many activities. Junior prom, senior prom, all the school dances. All because of you.
You made my left side completely stop working. You made me to have to relearn how to walk. You caused so much brain damage. I still struggle with eating. I still struggle with walking (a lot). I still fall all the time. And I’m still having a fairly difficult time with keeping up with schoolwork.
And yet, you also taught me what it means to be brave. You taught me what it means to be strong. You taught me what it means to truly fight every day for what I need. You taught me the true meaning of strength and how to rely on others I love to gain that strength. You ruined my life, and you changed it forever. You’ve caused insurmountable stress and extreme anxiety. You’ve caused so many bad things.
However, I’m choosing to look at you as a blessing, not a curse, and to look at all the things you’ve taught me about life. Because of you, I know the true meaning of life. Chiari, I will never forgive you. I will never be OK with what you did to me. I will never, ever again be able to truly be calm with any medical issue that occurs. I will never be the same person again. You’re an absolutely awful beast and one I wish I never had to deal with. I will never forgive you for everything you’ve done, and I will never forget the journey I’ve been on for many, many, many years.
With all my love and anger,
Natali
This post originally appeared on Amazingly Courageous.
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Natali is 19 years old and has a very rare craniofacial syndrome. A few years ago, she also was diagnosed with chiari malformation, a fairly rare brain malformation where the cerebellum herniates into the spinal column. That diagnosis changed her life forever, in so many ways. Right now, however, she is not letting it beat me, and is a premed student & loving college!
natali-masarskaya