Maddy’s Story

As a 14 year old, naturally, I assumed my life was difficult and that I was the only one going through experiences like bullying and being the odd one out. I was living in England, having moved there when I was 9, and was one of maybe 2 other American girls in my very local catholic school in the Cotswolds. Looking back of course, I see how very idyllic my life was, living in a gorgeous place with close and a loving family.

The headaches began when I was 13, but to be honest, the other symptoms, like dizziness and nausea, started a while before that. I guess I thought it was normal to feel a little sick every night, and it became a part of my life, usually unspoken. I wasn’t the kind of kid who faked sick to stay home; I was the kid who faked healthy to go to school – I was a nerd, by all accounts. So when the day came when I couldn’t get up for school due to a piercing headache, my parents knew something was wrong.

Within 4 days, I had an MRI, visited with a neurosurgeon, and had been diagnosed with Chiari malformation. The most striking moment to me was when the surgeon asked me to open my mouth, and showed my parents that my uvula was hanging off to the side, due to how much pressure was being put on my brain from lack of space. Freaky, cool, terrifying. 

The next few months included a trip to France with my class, and a trip to the tip of southern England. I couldn’t stop thinking about my brain, and my symptoms only got worse, whether this was psychosomatically, or literally, I do not know. I’d like to say I only remember snippets of my surgery experience that spring. That I remember counting to 10 and waking up feeling so much better. But that’s not how it went down. 

The months that followed my surgery were the toughest months of my life, with postpartum being a very close second. I was throwing up constantly, debilitated by hourly headaches, and having to rely on my parents to do everything for me, which no 14 year old wants to do. I have never felt more helpless or hopeless. I thought I would never be independent again, or able to stand up straight without throwing up. I lost a ton of weight. Slowly but surely after a few months, I turned a corner and saw the light at the end of the tunnel. The next month, we moved to Munich, a place that was my home for high school, and is my home now as of 2019.  Oddly, I don’t associate Munich with my surgery, even though it was on the tail end of my experience.

Chiari is something that a lot of people can have, just without it progressing, so it won’t affect their daily life to any degree. I was lucky to discover it when I did, as progression can lead to paralysis in the worst cases. Now that I’m a Mom (to a sweet 18-month old who I love with all my heart), I cannot fathom what my parents went through during those months with me, or even the months leading up to it. Not to mention the fact that we moved to a new country amidst it all, which my husband and I have also done now together. 

I am a person who practices gratitude by writing thank you cards, or sending a quick message, but I rarely practice gratitude for myself and my body. I am so lucky to be here and live in a healthy body today. I wanted to write something joyful when Chris asked me to contribute to his blog, but this is the story I needed to tell. Thanks for reading, and don’t forget to be grateful every day.

I am so lucky to be here and live in a healthy body today.

Maddy was born in Baltimore, but raised in the UK and Germany. After a brief stint for university back in the States, she returned to Munich, where she considers herself at home. She loves eating, laughing, and spending with her loved ones.