So this post, it’s a doozey! It is very real and raw and personal. The reason I decided to write this post is to not only bring awareness of this condition but to also bring awareness to the long term side effects one might experience. This is just the beginning of my story and I hope you read it and not feel sorry for this girl but read it and feel empowered by this girl. If I was writing this back when it all happened I wouldn’t be asking you to feel empowered by my situation. I would have wanted people to say, “Awww, you poor thing,” when they heard what I had been through. But now, as the adult version of this girl, unfolding this story before you with a different viewpoint, I want you to see how strong and brave this young girl was walking along this very treacherous journey that even some adults couldn’t fathom.
I had woken up one morning, before high school, with an excruciating headache. It was so bad that I was throwing up, with no end in sight, and couldn’t didn’t have the energy to get myself out of bed. I took some pain reliever and made it to school that day. It happened once more and then, standing in line at the grocery store with my mom, my eye sight went completely blurry and I couldn’t read the magazine I was holding. In an instant, I went from being completely fine, and normal, to not being able to walk out of the store without assistance from the grocery cart, my mom was pushing.
My parents said, “Enough!” and took me to my doctor. That was the start of a long road of hospital visits, doctor appointments, getting pricked by needles on a regular basis and hooked up to machines, more often than I would have liked.
My doctor suggested having an MRI done, since it was the first time I had complained of migraines. That MRI found a popcorn kernel sized ball of blood vessels that was leaking fluid on my brain, in turn, causing me to have severe migraines with horribly debilitating side effects. The technical term we were given was cavernous angioma; a blood vessel abnormality characterized by large, adjacent capillaries with little or no intervening brain. The blood flow through these vessels is slow. Cavernous angiomas can occur anywhere in the central nervous system.
I was half paying attention as the neurosurgeon told my mom and I this news. I’ll never forget when he said that if we didn’t have it removed it would rupture and either send me into a vegetative state, where I would not be recognizable to people who knew me, or I would die.
I can still see that exact moment in time. I’m in a small hospital room, with red pleather chairs. I was wearing a baseball hat, because it was hat day at school, and I can see the tears welling up in my moms eyes as he told us this news. I was shocked that something bad could happen to me. I was, after all, a 14 year old teenager who thought bad things don’t happen to young people like me. I was completely wrong.
I’m pretty sure this diagnosis blind sided my parents more than it did me. My mom and I left the office very shaken up. The whole care ride back to school I kept telling her, “I don’t want to have surgery. I can’t have brain surgery.” I was terrified at the idea of my head being opened up and not knowing whether I would wake up or not. I was terrified that I would feel something in the middle of surgery. I was just a very scared teenage girl.
The photo above, is of me right before my surgery. I was two weeks away from my 15th birthday. This is where I’m going to pause my story, for now.