Dear Chiari Malformation,
I can’t believe I’ve had you, my Chiari Malformation, for six years now. I remember when we met and I suddenly developed a constant pain in the back of my head as a freshman in high school. 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.
Meeting new people
You have introduced me to so many people over the years that I never thought I would meet at such a young age:
- ER doctors
- Pain management specialists
- Eye doctors of all kinds
- And so many others
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 disease
- Functional disorder
- Conversion disorder
- idiopathic migraines
Alternatively, people would just say 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 that you were Chiari Malformation for six years, it wasn’t until a month after your fourth birthday that your identity was confirmed by my neurologist.
The things you took
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 that 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.
Seeing us as one
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 the “special ed girl”, 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.
What you didn’t take
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 more or less adopted me, calling me their shadow. Another close friend renewed their vow that I would always be her best friend, even if you were now part of our friendship.
After having Chiari Malformation for six 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 can’t believe at this point that I’ve had Chiari Malformation for six years. 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 patients.