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The Shock Of A Lifetime

My name is Katie, and I am a former pastry chef, dog mom, wife and AVM survivor. I was diagnosed with an AVM when I was 30 years old after experiencing ocular migraines for years. It was challenging to get my diagnosis, and it was very shocking when I did. I did not know AVMs even existed. AVM is a malformation of arteries and veins that can rupture and cause stroke, aneurysm and death.

I was immediately referred to a neurosurgeon and was told to stay as stress-free as possible (haha) as I went through surgeries to remove it. I had to quit my job as a pastry chef, and now, baking is a foreign language due to the damage caused by removal. Removing it was the safest route for me, but it came with risks of death or disability. So, I quit my job and leaned on my significant other for support during three embolization surgeries and a craniotomy. 

That is how I acquired my brain injury; by removing my AVM, I removed blood flow permanently from my brain, which removed brain function in the area that created part of my eyesight. So, I am now permanently partially blind, and I have numerous neurological issues from the surgeries. While it was life-saving and necessary, I struggled with my outcome. I “look fine” and seem the same person, but I am not. And people around me couldn’t comprehend that and have since abandoned me to go through all of this alone. All of that pushed me to get closer to myself than I had ever been before. And for that, I am grateful. I am five years out of diagnosis and four years into disability. Invisible disability is hard, but I am doing my best. My significant other and I are now married, and we enjoy life as we can with the new me and our border collie, Belle. 

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