I opened this journal file on my computer this morning, not really knowing when I had written last. Prior to pausing my regular writing and blogging, I was in a good rhythm of journaling almost every day. Throughout the struggles I experienced medically in 2019, I wrote consistently and shared as much as I could on my blog and social media. But then in early 2020, I started helping my good friend Freddy Sandoval write his book on mental training and for about six months I shifted my attention and all the time and energy I had for writing towards that project. By the time we were finished, I think I was just ready to unplug for a while—and here we are, over a year and a half later.
So much has changed. Physically speaking, I am in the most peaceful point in my journey in over a decade. In a completely unexpected turn of events, my shunt completely failed in the late spring of 2020, and my body has been able to manage my hydrocephalus solely with my ETV ever since. There was a big adjustment period, but slowly I was able to stabilize and handle the difference in how my head felt. Everything just felt different, and somewhat foreign. Even though I was functioning – working, staying active, and walking a few miles almost every day, I was still feeling physically sick and having some unexplained symptoms. A few months later, it was discovered that the abandoned distal catheter from my shunt had perforated my bowel and had to be removed in an emergency surgery. As shocking as it was to discover that the catheter was in my bowel, it was even more alarming to hear that they believe that it had been there since the time of placement (during a previous revision surgery about 16 months prior). With this new information, so many symptoms that I had been fighting for so long made total sense, and it felt like a giant weight had been lifted off my shoulders.
My medical team is amazing and has been so dedicated to getting me through everything I’ve been through, especially in recent years. However, I was starting to feel like a broken record – constantly telling them how sick I was feeling, and that even though it looked like I was doing ok on the outside, I was suffering inside. Little did we know that my body was fighting a low-grade infection caused by the fact that several inches of my catheter were literally inside my small intestine. Once we knew what was going on, it finally allowed for a solution and true recovery. I was incredibly relieved and threw myself into full restoration mode – which included a mental break from thinking about being sick all the time. I needed some time to pull back from sharing everything, and just be. I’ve spent the past year focused on work, my relationship, and my family & friends.
If you have hydrocephalus or another condition that is ongoing, you understand that it never truly goes away. There isn’t a day that I don’t have to think about managing my headaches, pressure, and all the trauma-related symptoms that my nervous system has after so many surgeries. But I did make the choice to take a break from blogging about it for a while. It’s given me a chance to reset my rhythms in life and focus more attention on some exciting new things.
In 2022, I would like to share a little more, from a different lens. I believe there are a lot of hydrocephalus patients and family members who go through similar ups and downs – a time when things are very difficult and there is a constant battle, but then there is a period of quiet and better health. Maybe there are a series of surgeries strung together in a short amount of time, perhaps coupled with an infection, like mine. Or perhaps it’s a few months or a few years of increased pain. But then – almost unexpectedly - everything settles down, and things get better… but you still feel stuck in the reality of those difficult times.
Life gets easier to navigate, but you still struggle with what happened.
The knowledge that it happened feels like the knowledge that it could happen again at any time. The memories of how hard it was haunt you and make you worried that it could be even worse next time.
Honestly, this kind of trauma isn’t much different than what people experience going through any major life-changing challenge. Any personal loss, injury, or unexpected change calls for a similar type of healing process.
There is a time when the wounds are fresh and need immediate and constant attention.
All your energy goes into just making the next step, getting through the next day or week or month. Everything hurts.
But then the wounds start to heal.
They scab over, and things are still rough, but they start to sting a little less.
You begin to make it through whole days without constantly thinking about the pain and how to manage it.
Eventually everything seals back up, and you are past the worse part.
But friends, at that point you are faced with the choice to live in the memory of what happened, or face forward and move boldly into your future. It’s the hardest thing, and the best thing – to look at the difficulties you’ve been through, acknowledge them, and then shift your focus. I know – because not only have I been through the many challenges that hydrocephalus has brought (repeatedly), but because I have been through several other painful and life-shaping events and losses. Choosing to live and love between the madness of what I’ve been through is a daily decision for me. And I’m nowhere near perfect. When it’s hard and I fail, I start over. Sometimes I start over multiple times a day. And I’m grateful for the opportunity and grace to do so.
My goal for this next season is to write about how I’m continually challenging myself to move forward in the wake of the difficulty and trauma of the past several years. I feel like that’s what I can to contribute to this community right now. I’ve always been raw and open about how hard things have been, but I’ve also always shared where I turn to find the strength and anchor I need. I hope that this will encourage someone out there to keep fighting, and to hang tight when the storm rages.
Cheers, friends. Today we start a new chapter.
Here’s to the relentless pursuit of everything that’s important.
Stay in the arena,
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.