Sunday, July 21, 2019
Time is so hard to grasp. Sometimes it passes slowly, with each minute painfully ticking by, never seeming to move forward. Other times it passes so fast that you can’t believe a month has gone by, or a year. Recently I have realized that my analysis of time has been structured around the frequency of my shunt surgeries. As I’ve slipped into this pattern of 3 or 4 brain surgeries a year, I’ve found myself hyper focused on the number of months that I’m going to get in between the episodes. I always feel this extreme urgency to heal and get back to all aspects of my normal activity as soon as possible, because only then can I relax and fit in as much life as I can before the next round of shunt malfunction comes. I’ve always been concerned with how my situation is affecting the people I love, and this was particularly true when I was in a relationship. The more time I get in between, the better – and the faster I can heal, the less impact on the world around me. I do have some really solid routines for healing and rehabilitation. I have a system that works for me, and a lot of that is really healthy. I was pretty comfortable in this pattern; I felt like I knew what to expect, and how to handle it… as long as I got “the break” I needed in between.
News flash, Am.
You don’t have any control over the amount of time a shunt is accepted by your body.
…Of course I don’t.
Even saying all of that seems so silly now, as I process how many procedures I’ve had in the past few months. Instead of having 3 surgeries in a year, I have had 5 surgeries in 2 ½ months – with complications like a massive CSF leak and a shunt infection in between. Everything I thought I knew about hydrocephalus and living with this challenge has shifted, and a new reality has come to light.
I used to tell my neurosurgeon that I wanted to get a year in between surgeries. Even though that has only happened once in my life, every time I had a post-op appointment, I would tell him that this was the one. This was the shunt that was going to last.
And I was dead serious. I believed it.
I was obsessed with getting a break.
What the challenge of the past few months has taught me is that while I have no control over the actual time I will have between this madness, I do have the ability to reframe my definition of “the break”. By changing my expectations, and more or less having no expectations, I have started to focus on single days, hours, or even moments – and I’m redefining those as my breaks.
The small things.
The good stuff.
The fun times.
But also, the mundane, normal, and routine times.
If the breaks are the times that I identify as such, then I am in control of how I view peace in my world—even as the chaos continues, and the future is unknown.
Yesterday was a break.
A slow and easy weekend morning with a few chores and good coffee.
Some quiet time to study and write.
A solid lift and a few hours with one of my closest friends. A little bit of bourbon.
A good cry and a long nap.
Driving to my parent’s house with the windows down, as the sun goes down on Oregon farmland. There is nothing prettier.
Soaking up as much family time as possible, as my sister and her family are visiting from Texas.
Precious time with my twin nieces – marveling at how smart and beautiful they are at only six years old… and knowing that next time I see them, they will be even more grown up.
This… this one day. This was a break.
It was a break because I defined it as such.
And I acknowledged it as one.
And here’s what I know: If it was all I had, it would be enough.
Last week, I returned to work full time. My first day back after a month battling the shunt infection and several surgeries, I was so excited. I woke up early and went through my normal morning routine of studying and praying before I got my day started, and I was absolutely sure that I was ready to tackle everything the day had to throw at me. By 11:00am, I was back home and in bed, my nervous system completely overwhelmed by the morning. I slept like a rock for 2 hours, then got myself back together and went back to work for a few more hours before coming home and napping again for 3 hours. I got up and ate dinner, then went back to bed and slept all night.
It was hard. A lot harder than I thought.
But that one day, coupled with the next, and the next, became the path I was building back to full energy. I was much more aware of that this time.
I’ve always said “The fastest way through the shit is straight through the shit. No detours.”
But I could feel it this time. I could feel every minute passing as I pushed myself through the shit. The fatigue has been heavier than it’s ever been.
Maybe it’s because the infection brought so many more complications.
Maybe it’s because they cut my abdominal area 3 times in 2 weeks.
Maybe it’s because I’m getting older.
But what does it change?
It might change how long it takes, but it does not change who I am, or how I’m going to respond.
I’m here for the battle, and I will fight every day with the same knowledge that my faith is solid, my tribe is behind me, my heart is strong, and my mind is indestructible.
It will not change me.
This is my break.
So be truly glad. There is wonderful joy ahead, even though you must endure many trials for a little while. These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold—though your faith is far more precious than mere gold.
1 Peter 1:6-7
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.