To My Chiari Malformation on Its Sixth Birthday


Dear Chiari malformation,

You came into my life six years ago now, when I suddenly developed a constant pain in the back of my head. I was a freshman in high school, and coincidentally it was Chiari Malformation Awareness Month, but I didn’t know that – I didn’t even know how to spell Chiari at the time. I figured you were just a sign I needed to drink more water, or maybe you were a tension headache, or just allergies of some sort. Oh, how silly I was to think that.

 

You started to introduce me to neurologists, nurses, ER doctors, pain management specialists, eye doctors of all kinds, orthopedists and so many others – people I never thought I would meet at such a young age. We didn’t just meet people in Virginia either – you introduced me to doctors in New York, North Carolina, Ohio and Maryland too. No one quite knew what to make of you, and assumed you didn’t exist for the longest time. People called you many inaccurate names including celiac, functional disorder, conversion disorder, idiopathic migraines, epilepsy or just said you’re “all in my head.” That’s the thing about you though – you are outside of my head. That’s your most identifying trait on a MRI scan. While we suspected you were Chiari malformation for a long time, it wasn’t until a month after your fourth birthday that your identity was confirmed by my neurologist.

You took me away from places such as concerts, movies, restaurants and stores, instead insisting on taking me to places I never had been before. I sat in many empty hallways, lobbies and even staircases because you would suddenly demand your presence be known, usually because of flashing lights. I’ve learned how to handle large amounts of pain without letting anyone else know how bad it is, and I really do know how to make a quick exit because of you.

There have been many people over the years who saw us as one, and I’m not going to lie – that really took a toll on me. Teachers and administrators would exclude me from many opportunities because they feared you, or they thought you were brain cancer. Fellow students often avoided me, and I had almost no friends outside of band. My family had to cancel many trips and change plans because of you too – no more traveling for long car rides or going to fun events. People would meet you and wonder why you were with me, of all people. It just didn’t seem fair.

But you did not take everything from me in the end. I remember when I came back to school after you put me in the hospital the first time, a kind person named Ellen more or less adopted me, calling me their shadow. Another close friend named Shelby renewed her vow that I would always be her best friend, even if you were now part of our friendship. Over the years, I have built up an amazing support network consisting of the best friends anyone could ask for (both online and in real life), a wonderful family, supportive teachers and advisors and the best neurologist, ophthalmologist and primary care doctor ever. Whenever I feel like you are taking over, this support network helps remind me that you do not define me, and I am not my condition – or, as my friend puts it, I’m not VeroniChiari. You may have been with me through three schools, two moves, several missed band concerts, ER visits and countless late nights, but you have not broken me. And you never will.

So, happy sixth birthday, Chiari malformation. I hope I don’t have to celebrate many more birthdays with you, and that a cure may be found in the future for me and the many other Chiari warriors.

This post originally appeared on Veroniiiica.

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Thinkstock photo via RuthBlack.

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