-My Instagram post from last night: Safely resting on the other side of #brainsurgery #15 ⚓️💙 it was a super long day, and I'm sore and tired, but the procedure brought almost instant relief from the pressure, and we are so thankful. 💙⚓️ we'll move onward tomorrow, but for tonight, I'm resting, breathing and listening to music... and no longer fighting back tears of exhaustion.
The surgery went as well as we had hoped; my shunt valve and anti siphon valve were both replaced, and I felt almost immediate relief from the pressure related pain. We are back home in Salem already, and since I'm so tired, it seems almost surreal that it even happened. But I'm thankful it's over, and we are heading back towards where I need to be physically.
I always trust the hands that hold my head.
As we prepare for another shunt surgery (tomorrow), I’m starting to reflect on the five months that have passed since the two surgeries I had in December. Today I looked back through my journal, reading through all the thoughts and processing I’ve dumped into 150 days worth of pages. In moments of great pain, and on days where even the smallest victories keep me believing, I sit down and put my raw emotions into words. Sometimes those words are shared, but often, they are just for me. As I go back and read them from time to time, they teach me so much about myself. I learn that I’m stronger than I think I am, and that I love harder than I should sometimes. In my relationships, I feel deeply, and I commit fully. In terms of my health, I’ve accepted the challenge of my condition, but I don’t see myself as sick. I’m insanely stubborn. And I’m coming through every life event planning on success, and adjusting as needed.
I’m often asked for tips and ideas to help patients and family members cope with their life with hydrocephalus. One of the first things I always suggest is that they find a way to express the bottled up emotions that can come from dealing with a chronic condition. If you don’t release all of those thoughts and feelings, they can hold you back when it comes time to communicate with someone close to you, or make clear and quick decisions about something important. For me, I have found that writing is a way for me to decompress, and also is an avenue by which I can share some of those thoughts with others who are experiencing similar things.
My journal reads as a letter to a close friend. It’s filled with joy, sorrow, struggle, and love. Parts of it are poetry and song lyrics, and some is more like a matter-of-fact account of my medical journey. Regardless of what your form of expression may be, make sure it’s always authentic, it’s raw, and ultimately healing to your soul.
Thank you for all of the encouraging messages and emails this past week.
Here’s to the relentless pursuit of love, life, and peace.
This morning, the spring rain is falling here in Oregon, washing the landscape and cleansing my soul. It’s been an interesting couple of months. I’ve been retreating a little bit - pulling back, processing, and preparing myself mentally for the road ahead. After several months of spilling my thoughts and sharing my journey every week, I’ve needed this time to rest and remember who I am. In this period of stillness, I’ve had a chance to reflect on where I’ve been, and where I’m going.
One year ago, the focus of my treatment shifted, and my life changed forever. Under the guidance of my OT/PT, we began to address the current condition of my central nervous system (CNS), and the trauma that has resulted from over ten surgeries on my brain in just a few short years. Until that point, the sole focus of my medical team had been on my hydrocephalus, and my shunt. The shunt has always been the cause for the concern, the pain, and ultimately, all the brain surgeries. Unfortunately, we can’t do anything about the fact that my body needs a shunt, but hates it. At this point, I’m only averaging 3-6 months in between surgery episodes. So when my therapist told us that we would be treating my pain by working to soothe and heal my nervous system from the trauma of repeated surgery, it was a new way of thinking. In a nutshell, hydrocephalus can not be healed, but trauma can.
Trauma comes in many different forms- physical, psychological, and emotional. Brain surgery several times a year has put my nervous system through a firestorm of trauma - from the anesthesia, medications, and the physical wounds of surgery, to the emotional roller coaster and the mental exhaustion of simply trying to get through the episodes without complete system meltdown. The nerves and muscles in my face, my inner ear, and vestibular system have all been rocked and damaged. The physical symptoms of PTSD have also become more pronounced as each surgery passes. But most importantly, my CNS gets stuck in sympathetic response (commonly referred to as “fight or flight”). As my brain reels from trauma after trauma, my system is subconsciously guarding itself from further harm, at all times. This heightened state of awareness affects my sleep, breathing, and my ability to heal. The main focus of my therapy and rehabilitation this past year has been to assist my body in getting out of sympathetic response, and into parasympathetic response (rest and digest mode). Honestly, it’s very difficult. I had no idea that my brain was so damaged, and I was unprepared for how terrifying the process of unearthing all of the suppressed trauma would be. My brain only responds to certain people and in certain environments, and only lets go when I am safe, and completely fatigued, neurologically. I’m not sure if I will ever feel comfortable with this, but I know that I have a new respect for what I’m going through every time I have a shunt malfunction or surgery. After working on rehabilitation with this focus for just a year, I’ve realized that it is going to be one of the key factors in my success, for the rest of my life.
In 2015, I had a total of four surgeries. On paper, it was the worse year we’ve had with my brain to date, medically. However, by treating my CNS to heal the trauma after each surgery, we have been able to keep on track with the strategies that have historically allowed me to combat my hydrocephalus successfully. I’ve stayed active and strong, worked full time, and maintained the stability that I have strived so hard for in the past few years. While this has been one of the hardest years of my life, it’s also been one of the healthiest, and one of the happiest years. My mental perspective has also changed as my medical reality has evolved. I’ve always been a fighter, but now I know that I have to make an active choice to be well, and that only I can put in the work necessary to make that happen. It’s a daily challenge to to reach deep inside myself, choose to let go, and trust this painful and frightening process.
My current shunt is five months old. Sometime around the beginning of March, my pain spiked, and we began the all-too-familiar process of trying to right the ship to avoid the inevitable. We’ve tried everything.
I’ve rested, and I’ve pushed.
I’ve medicated, and I’ve detoxed.
We’ve adjusted, and we’ve waited.
I’ve got pages and pages of journaling and documentation of previous shunt failures, and treatments and tricks that have helped. In the past two months, I have poured myself into those logs - seeking anything that seems like a repeated pattern, and trying everything I know to do. And, in the end, we fought a good battle, and I’m proud of where I am. I’m strong, I’m at peace, and I’m ready. But there is nothing left to do, except to replace the shunt valves and start over.
I’m committed to finding the clearest path for my brain to travel, while it processes the trauma that I’m about to add to my system. This is about the physical aspects of recovery, but it’s also about mindset. It’s about being a fighter, but not fighting the process. It’s about trusting my team, and myself. And it’s about taking the shortest path through the shit, which is unfortunately straight through the shit. No detours.
There is no greater gift than for someone to care for you so much, that they are willing to get down in the trenches of life with you in your darkest hour and weakest moments. You look them in the eyes, let them see your pain, and are comforted by their presence in these moments of transparency. I’ve said this before, but I am unbelievably blessed by those who hold my heart. My family, my friends, and my community surround me, covering me in love, encouragement and prayers. I’m not alone, and together we stand in this battle. That's the truth.
Let’s do this again. We’ll hit the reset button, and show the world that we will be ok.
Surgery #15 - scheduled 5/25/16
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 (x21), 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.