The tension is here
Between who you are, and who you could be
Between how it is, and how it should be
These lyrics, to the Switchfoot song Dare You to Move, have always struck my soul, piercing through me like only good music does. It seems like this song always makes it’s way back to me, in moments when I really need the challenge. I’ve often wondered what Jon Foreman of Switchfoot was thinking when he originally wrote it, and if he felt anything like I feel when I hear the lyrics. This song is truly the ultimate battle cry to stay in the arena, even when the storm rages.
The tension is here. I know that tension, I feel it every day. And I’ve heard this song hundreds of times… maybe more. It was the last song on my workout playlist for about 2 years, and has been the last song that I listen to on my headphones before going into brain surgery, for at least the last 10 surgeries. But this morning, as I was listening to the bridge, these familiar words suddenly meant something different to me. I realized that the tension is the hard work. The tension is the day in, day out, difficult moments we have to push through - to get to where we’re going. The work is the difference between who you are, and who you could be, and the catalyst between how it is, and how it should be. It’s the work you put in on days when you don’t feel like going forward, when you feel like what you’re working for is never going to happen. The tension is in those moments, and it separates the ones who succeed from the ones who don’t.
The tension is the struggle.
The tension is the battle.
The tension is the work.
As many of you already know, I’ve had a rough past six weeks, medically. At the beginning of June, I hit the wall with a shunt that we knew was malfunctioning since early February. The shift from fighting the inevitable, to preparing for battle, was difficult this time, as I tried to keep a death grip on anything I could control - until I couldn’t control it anymore. On June 6th, I went through surgery to replace my shunt valve, and started back on the road to recovery. I had barely started to get my energy back, three weeks later, and I started to have significant wound healing issues. The incision that had originally looked perfect, started coming apart. Every one of my surgeries has come with a unique set of challenges, but the concern of infection has never been one that gets brushed off. My neurosurgeon will take zero chances with infection. After a week or so of trying to get things back on track, I underwent another surgery this past Wednesday, to cut out the damaged tissue, reposition the shunt valve, and re-fasten most of the incision from a month ago. So, here we are again… at the beginning of recovery, back where the work gets really real. And the tension is here.
I feel like I’m never going to be comfortable with sharing all the details of my struggle with the world. I cringe when I realize that I need to go onto my website and update the “My Story” page with yet another surgery. I feel like my personal friends must get tired of the hydrocephalus related content on my social media. But every time I get close to throwing in the towel, I am reminded that this is not just my story anymore…. this is everybody’s story. Sharing and being public might not be the most natural thing for me, but supporting other families and patients with hydrocephalus is the purpose that I believe God has given me, for my pain. And in order to do that, I have to be willing to sit in those moments of discomfort, and just be. It means that I need to continue to share my story, and connect with other people, even when I don’t feel like it. But most of all, it means that I have to keep working at all of this - not just the physical aspect, but also the mental, emotional, and spiritual aspects of it. It’s all hard work, but in the end… Those are the minutes, hours, and days of work, that will be the difference between how it is, and how it should be.
Stay in the arena,
For Ben..... slay the day (in the arena, of course.)
7/15/2017 10:00:21 pm
Oh Amy... I haven't been following your story very closely these last few weeks. I had no idea we were both dealing with the same hydrocephalus/infection crap. This is my first time dealing with it. I've had a picc-line for almost eight weeks and have another two to go, just to be safe. I've done the 24-7 antibiotic infusion therapy, the Q-8 therapy with Vancomycin, and now I'm on a Q-12 vanco infusion drip. My cultures are clean and I finally have a working shunt system again. I'm 10 days post op and I know I have days and weeks and months ahead to heal from this set back that necessitated my tenth surgery since June 2016. I'm glad to be on this side of surgery, but like you said... this is the hard part, the part that requires the most strength, courage, patience, and determination.
7/15/2017 11:38:33 pm
⚓️💙 Love you too sweetie... you have unfortunately been through the "full meal deal" infection thing... whereas I narrowly escaped with just a wound infection-- it was still a crazy month... and I'm glad we are both on the healing side of this. I feel ya on the antibiotic thing... I thing today was my 24th day with no break...? It's insane. 😘
7/16/2017 08:07:08 am
I am a mom of a hydro warrior. My daughter has had hydrocephalus since birth, she's had 28 brain surgeries, and she will be 23 in August and will celebrate her 3 year shunt-a-versary on her birthday! I have watched her go through the unimaginable and I am grateful for every blessed day! Through her life and your own I am encouraged to relentlessly pursue my own life and to find joy in every moment! Thank you for your transparency and courage to share your story, especially through the storms.
7/16/2017 08:52:26 am
Tracie, thank you. I appreciate you connecting with me and I feel like I see that you support your daughter relentlessly. ?⚓️ stay strong, and stay in the arena... always.
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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.