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.

me with my diploma

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,

This post originally appeared on Amazingly Courageous.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Find this story helpful? Share it with someone you care about.

Related to Chiari Malformation

My Daughter Has Severe Hearing Loss. And Perfect Pitch.

My 14-year-old daughter, Shea (pronounced Shay), plays violin in the school orchestra and takes piano lessons. She has an incredible ability to hear and replicate music, and she has the ability to learn a song on the violin and then play it by memory on the piano. As a person who’s never played any instrument, this [...]

How Do You Tell Your Daughter She Has to Have Brain Surgery?

How do you tell your 10-year-old daughter she has to have brain surgery?  There’s not really any good way. But, we did it with the doctor,who explained to her (in simple terms) the medical reasons why she needed to have brain surgery for Chiari Malformation. And of course my daughter began to cry out of [...]

When I Let My Kids With Special Needs Go Off on Their Own

It’s been an eventful weekend for my family at the one of the largest indoor water parks in the country. For the first time ever, the kids went their own ways independent of us. This wouldn’t be anything new for most parents of typical kids. But our 14-year-old daughter and 11-year-old son are not, nor [...]

When My Teenage Daughter Was Distraught Over Her Diagnosis, Her Grandma Told Her This

A couple of months ago, my 13-year-old daughter, Shea (pronounced Shay), had her yearly appointment with her orthopedic surgeon to monitor her congenital scoliosis (a 30-degree C-shaped curve in her spine due to a half-formed vertebrae). We learned that she will most likely not need corrective surgery because she’s most likely done growing. This is [...]