It Feels Like Letting Go
In the months since launching this website, I’ve received hundreds of emails from other hydrocephalus patients, family members, and supporters. The overwhelmingly common theme of these messages has simply been “how do you cope with the frustration?” Truthfully, I really don’t have a good answer for this question. I can only let you know that if you are dealing with the aggravation, discouragement, and fatigue of life with hydro (or any other illness, for that matter), you are not alone - and I am definitely no exception; I am frustrated too. Clifton and I have put ourselves out there by sharing our story, and one of our big messages to the community has been to take an aggressive, proactive, multi-disciplinary approach to overall health - and to work as hard as you can to control the factors that you can. But sometimes, you just have to let go, stop trying to fight at every single turn, and just trust the people around you to catch you as you fall into their arms - literally and figuratively.
So, this is where I’m at. Since my last blog post a few weeks ago, we have been re-grouping and making some adjustments to my overall rehabilitation plan. I’m four months post-op now, and while I am physically the strongest I have ever been, and emotionally I am happy and at peace, my headache pain is once again off the charts - and the decision has been made to try to let my brain rest a little bit, while we have the chance. Even though I’m in pain, my medical team doesn’t have reason to believe my shunt is failing, so now is the time to take these steps back. On one hand, I’m relieved and content to wait it out for a while, just treat the pain as I can, and live my life quietly - outside the arena. I need the rest, especially since I haven’t had the best track record for time between surgeries these past few years. But on the other hand, it’s frustrating and disheartening, and it’s definitely not my nature sit out of the battle, and not push for constant improvement. Pain is a lonely island - especially when you are well enough that the outside world believes you are completely “normal”. Let’s be honest… I’m basically the queen of “fake it ’til you make it”.
However, I need this right now.
I need this time to walk alone and reset my resolve.
I need this time to pull back and start over.
And my brain needs a minute.. or a few weeks.
There is a Matthew Perryman Jones record that I’ve had on repeat the past couple weeks, called Feels Like Letting Go. It pretty much sums up how I’m feeling.
Oh my love
help me open my heart again
tear it open let the rain fall in
wash this hardness underneath my skin
Oh my love
let me hear your voice come through
I wanna know the love inside of you
make this dark heart believe in what is true
I know that in the dark there's a fear of letting go
I know that in my heart that I fear what I don't know
and this feels like I'm letting go
and this feels like I'm letting go
I'm letting go
If you follow this blog or have read the content of this website, you know that music is a crucial part of my life, and my recovery process. Although I’ve been a musician for most of my life, it wasn’t until this past year that I learned the profound physical affect that music and rhythm can have to soothe the central nervous system. Music also has a powerful way of putting words and melody to emotions you can’t otherwise explain. On my Instagram account, I regularly share music that I’m listening to, and I am starting to create and share #musicheals playlists on my Spotify account, because I believe that music is both a language and a fellowship, and it is created to be shared.
I hope that wherever you are tonight, you can be still, breathe, and listen to some music. We’re all in this together. Stay in the arena when you can, and take a break when you need to.
In relentless pursuit,
Susan K Bowman
9/9/2017 09:54:49 pm
Mahalo for sharing your journey🌴🌺🌈
9/11/2017 08:31:04 am
1/3/2020 02:28:44 am
Hello, Am! if you believe that this is what you need right now then we will support you al the way. You've been striving people ever since you had this blog, that's why I am pretty sure that it gets tiring on the process. It is okay to feel that way as long as you'll stand up later on. But if you think that you need to take this journey alone and you need a break, then you must go for it. It is important that we know how to follow our intuition especially for ourselves.
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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.