What Having Chiari Malformation Really Means

I wasn’t going to share this, but my experience from last night changed my mind. I watched Haley, my 11-year-old daughter, curled up in a ball on the couch, sobbing and telling me she just wished the pain would stop: the headaches, the back and neck pain. And as I have been laying with my arms wrapped around her up all night praying God would just let me get a couple hours sleep so I could get some relief, I felt compelled to share the speech I was asked to give a few weeks ago at the Chiari Walk in Jamestown because awareness and research is so important.

I wrote my speech, but gave Haley a yellow pad and asked her to write down what the word “Chiari” meant to her. I will share what she wrote in a pic below that broke my heart:

The following is what I wrote about what Chiari really is and how it affects the lives of those who struggle with this condition:

So a couple weeks ago, I was out and ran into some friends I have known for years. They both asked me what Chiari is. I’m always a little taken aback and surprised when people I know ask me that. I think to myself, do they really not know my story?, due to all the posts I’ve shared on Facebook for the past 10+years. But the truth is not everyone on FB sees all your posts, and if it does happen to pop up in their newsfeed not everyone takes the time to read them. So yes, it’s possible even with endless posts, people you think know what you are going through when they really don’t.

So when I hear this question, I always give the clinical definition with little emotion. It’s a serious neurological condition in which the brain herniates through the skull, pushing on the nerves and spinal cord and disrupting the normal flow of cerebrospinal fluid, which causes debilitating pain and life threatening symptoms.

They usually give me this “wow” look and say that sounds painful. I matter-of-factly say yes, that my daughter has it, and that is why I do what I do to raise money for research and to raise awareness.

I don’t often share anymore that I too have the condition and how it affects me everyday of my life. I don’t want people to look at me differently, and I know if more than half the doctors out there can’t help, then your sympathy won’t either. Empathy, understanding, maybe.

So I went home and for some reason the question this time replayed over and over in my head.

What is Chiari?

Chiari is soo much more than a clinical definition. It’s life-altering. Something that changed my life with one epidural 11 years ago because of the negligence of a doctor not giving me the results of an MRI after a serious car accident my last year of dental hygiene school. I did not know I had Chiari when I got pregnant. I started collapsing and I knew I had pain, but it was nothing compared to what I was about to experience for the next 11 years and continue to. Had I known about the Chiari, I would have had a scheduled c-section under general anesthesia.

The epidural with my emergency c-section caused a suction and herniated my brain further. Ever since, I have an icy hot burning feeling throughout my entire body that never goes away. That’s in addition to the continual headaches and bizarre, scary neurological symptoms. I’m sharing this part because if I can save one person from what had happened to me, it is worth it. I would not wish this level of pain on anyone.

So back to what is Chiari? Chiari feels terrifying and evil, and it will destroy you if you let it. It’s a daily battle of mind over matter and who is going to be stronger that day. Your mind or the debilitating pain that is a constant.

The severity and intensity of symptoms fluctuates from what you did the day before to the change in weather.

It’s a thief that steals your memory and a Joker that causes you to misspeak and use the wrong words.

It’s a knife that feels like it’s stabbing you as you clench your head praying to God the pain will stop.

It’s fear, that if the pain does stop it might be the end.

It’s skepticism from friends, family and those that you so desperately want to understand the torture you take on everyday while still managing to smile through the pain.

It is not a bruise or a cast on a broken arm that everyone can see. It’s invisible, but can be felt daily by those who experience it.

It’s hearing “But you look good,” leaving you feel invalidated and isolated.

It’s judgment from others because you don’t “look sick.”

It’s explaining why you can do this today and not tomorrow. How you will pay for it for days, but still want to live and experience things the same as everyone else so you push on.

It’s struggling — struggling with the decision to have a surgery that could help you, hurt you, lead to multiple surgeries or worse.

It is a knife that cuts into your heart, your dreams and everything you worked so hard for that leaves a hole that can rarely be repaired.

It’s horrifying, each time you see that purple candle in your FB newsfeed and hear of another loss, a life taken much too soon. It feels like a nightmare — you wish you could wake up from it, but you can’t.

It’s guilt, knowing you passed on this condition to your innocent child that you love more than life itself, and there’s nothing you can do to take it away.

It’s creating a bucket list, and trying to check off everything you possibly can.

It’s appreciating each and every breath, step and moment because you know just how quickly it can be taken away.

It a maze searching for correct, consistent info, answers and research.

It’s jumping over hurdles to find educated doctors.

It’s jumping through hoops with insurance companies.

It’s being an advocate, educating yourself and sadly more times than not, educating the doctor treating you.

It’s strength you never knew you had.

It’s compassion for others who are struggling.

It’s finding a purpose.

It’s finding direction when your path has changed.

It’s being the light for someone else’s darkness.

It’s hope for a cure.

It’s why we are here today.

It’s why we walk.