In June of this year, I walked into my neurosurgeon’s office in Bend, Oregon for the first time in almost three years. The distinct smell, the artwork on the walls, and the environment were all familiar, but it didn’t feel the same. It was surreal to be there for a routine check-in, and not a meeting to discuss surgery. The look on my doctor’s face when he walked into the exam room said it all. Relief, joy, and victory. After battling so hard for so many years, the idea that I could go even one full year without surgery had felt unattainable. But here we are, three years later. Things have been relatively calm, mostly quiet, and ultimately manageable for over 1,000 days. I’m so grateful.
This period of medical stability began with a game-time decision made by my neurosurgeon to remove my VP shunt after it had completely failed in June of 2020. I already had an ETV, but had been unable to function without both the shunt and ETV for a number of years. We had racked up 30 surgeries at that point, at a pace that had become exhausting. So he took the chance that if he removed the shunt (which had been the cause of so many surgeries), my brain would figure out a way to function with only the ETV. I’m not going to pretend that this was an easy transition, but after several rough months it eventually smoothed out and I found a new normal. Over the course of the summer and fall of 2020, while the world was distracted by the pandemic, I moved aggressively towards finding overall wellness and peace. We searched and found answers for my ongoing infection issues, and I was able to get off antibiotics, antibacterials, and most medication for the first time in years. My soul found peace as one by one the things my family, friends and I had worked and prayed so hard for started to come to fruition. It’s been amazing to be able to share this part of the story - instead of the focus only being on surviving the repeated blows, and the willingness to stay in the fight. We never left the arena, and it paid off.
As part of the @hydroassoc 2023 Hydrocephalus Awareness Month, they are asking people affected by #hydrocephalus to share their personal story, with the theme being “Take control. Flip the script.” When I got the email with this title, it dawned on me that this has always been my theme. It’s been the thread that runs through all my social media and blog posts ever since I started sharing my journey with hydrocephalus back in 2014. I was blessed to be raised by parents who instilled the value of resilience in all of us as kids, but I’ve always been aware of the importance of language and attitude. One of the only things you can control in your life is how you portray your story to the world. I’ve always tried to be realistic and open about the pain, but also hopeful and intentional about the future. In this moment, I have the privilege of using the words stable, manageable, and surgery-free. But even if someday in the future things shift again and we’re back in the battle, I will remain committed to using the words strong, ready, faithful, relentless, choice, and hope.
Many blessings to all my fellow hydro warriors.
Stay in the arena, it’s where the magic happens.
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 (x31), 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.