At 17 years old, I was diagnosed with Chiari one malformation. Probably never heard of it right? Chiari malformation is a condition of the back of the skull. The back of the skull is too small, forcing the cerebellum part of the brain to be pushed down into the spinal column instead of staying inside the skull. Basically, my brain is too big to fit inside my skull. The cerebellum controls your balance and coordination. Chiari gives you symptoms such as severe pressure in the back of your head, neck aches, blurry vision, bad balance, dizziness, tingling in your upper extremities, trouble swallowing, nausea and vomiting. In a more simple explanation, it feels like an elephant sitting on your head 24/7.
Unfortunately, there is absolutely no cure for this condition. The only treatment is brain surgery which is to alleviate symptoms of the compression. The surgery removes a small section of bone from the bottom of your skull to allow CSF (cerebral spinal fluid) to flow better. There is absolutely no guarantee that the surgery will work or help your symptoms at all. After surgery, symptoms can be gone for months and even years, but randomly come back worse than ever. There are more brain surgical options to alleviate symptoms that can be done. Some people have chiari surgery up to four times. I was terrified when I was told I had to get brain surgery. Who would ever think that they would need to get brain surgery? I sure did not.
This experience taught me a lot about strength and bravery. A lot of people with a chronic illness try and be extremely positive and make the best of the situation they are in. That is totally amazing but also, its okay not to be okay. It's okay to cry from the pain, it's okay to be scared, it's okay to not know what's going to happen next and it's okay to feel sick and tired all the time. Scream, yell, cry, do whatever you want. There is nothing wrong with hating the situation you are in and to be upset with the changes that have had to happen in your life. You don't know how much fun has been taken away from you until you see all of your friends jumping on a trampoline without you because if you do your head will hurt. Or, until you can't go on that really steep water slide at the water park because you can't lay the back of your head down on a ride. There is so much hate that comes with this condition but also a lot of strength.
After all I have gone through, i've learned to appreciate the little things in life. I appreciate waking up in the morning, being able to walk, breathe and talk correctly because some people with my condition, can not do that. There are terrible days but also beautiful ones. Live them all and don't give up. When you have had a lot of rough days, you learn to appreciate the beautiful days a hell of alot more.
