Several years ago, a therapist suggested that I write messages to myself on post-it notes, and put them on my mirror. These photos have become a thread in the tapestry of my online life, but I have never shared what the notes mean to me. In this blog series, I will share a handful of those moments - in hopes that it will provide encouragement to someone out there.
Several years ago, I went through a really rough patch with my hydrocephalus, where I had a total of 4 brain surgeries in less than 6 months. It was a pivotal point in my understanding of what living with hydrocephalus was going to be. Suddenly there was a new reality, that these surgeries could come in clusters… and that no matter how healthy I was otherwise, the bottom line was simply whether or not my brain would decide to accept and heal from the shunt surgeries that are required to keep me alive.
It was during this time that I learned a valuable lesson. Even though I had zero control over how my brain was responding to the shunt, I found that I had complete control over my own reaction to these setbacks and repeated surgeries. Controlling my reaction really controlled my overall experience. Going forward from that point, I made a conscious decision to tell myself that this was just required maintenance. When the shunt needs to be repaired or replaced, I tell myself to “hit the reset button” and start over again. I’m not suggesting that I downplay the fact that this is brain surgery – believe me, it’s awful. But I do my best to keep it in perspective.
I have often explained to my friends and supporters that if I treat brain surgery like it’s a giant catastrophe, my life will feel like one giant catastrophe. For the last several years, I have had brain surgery again and again – and for now, there is no guarantee that this frequency will let up. So, when something goes wrong with my shunt, I do everything in my power to take it in stride mentally. Controlling my emotional reaction makes it easier to navigate the physical challenges that are inevitable.
This week I had my 22nd surgery related to hydrocephalus. This time it was a laparoscopic procedure to re-route my distal (abdominal) catheter, which was wrapped around my liver and rubbing on my diaphragm. As usual, it was a long and painful process to diagnose and work through this setback, and I’m relieved to once again be safely on the other side of surgery. It will take me a little while to get my energy and strength back to where I was pre-surgery, but I am ready to put in that work and move forward. Each day, I remind myself that the way I experience my own life is completely under my control.
I am strong.
I am healthy.
I am capable.
I am loved.
And I am in relentless pursuit of everything that’s important.
Hit the reset button.
My name is Amy but friends and family call me Am. I am a lover of dogs, good whiskey, and strength training. I'm a brain surgery survivor (x29), a fiddle player, a construction designer, and a boxing enthusiast. I have six real siblings, and five fake brothers. I love deeply, and consider my close friends to be family.