Going With the Flow
“Both the teardrop and the tempest are made of water, making it the most yielding and the most destructive force on Earth.”
Fiona Paul, Venom
Wow...it's hard to believe that this time two years ago, I was on the other side of my first brain surgery (ICP bolt aside). Now I have three under my belt...and I feel like it was an entirely different lifetime ago. I never realized, even then, in the worst of it, just how much time and energy and personality washed away in the wake of the quietly raging storm constantly pounding against the inside my skull. Only in the past few weeks (yes, just WEEKS) have I actually gotten to a place where I feel like I'm back to a baseline that others would recognize as "normal."
In the hydrocephalus community, we tend to refer to ourselves as “hydro warriors.” I’ve come not only to appreciate but to embrace, and even champion, that term. Warriors go to battle; hydro warriors are always fighting just to be alive. Getting out of bed in the morning may not feel as exciting as a knockdown, drag out fight, but for me, some days, it takes a truly heroic effort to get up long enough to take the dog outside, only to curl up on the couch for a nap my cats would envy. Going back to finish school was a huge accomplishment, but it took a fairly ridiculous amount of energy for me to do anything productive. I frequently joke that I wrote the majority of my senior thesis in my sleep, but it really is disturbingly accurate.
But recently, something has changed. I have more energy, more willpower, more enthusiasm and motivation for living. The sun feels brighter, colors seem more vibrant, food tastes better: I have fallen back in love with life in the most cliché way possible. I actually find myself finding the joy in cleaning, organizing, and most importantly creating. Knitting has been my lifeline through all of my health issues, but my desire to create has never been completely satisfied by one medium. Since I was a wee thing, I have dabbled in paints, scribbled words and doodles alike across every scrap of paper within reach. Art is and always will be a part of me—not even my hydro could drown that out.
For the first time in YEARS, I finally have both my hydrocephalus and my depression under control enough to open up my world and allow me time and energy to devote to my passions. From a medical standpoint, my depression is separate from my physiological brain condition (but considering how little hydrocephalus is understood and researched, no one can definitively say they are not intricately linked—we are, after all talking about direct stress to the central nervous system). I find myself seeking out new opportunities and relishing relationships in a way I haven’t since high school. For all intents and purposes, I feel like someone has hit “Play” on my life again, after being stuck on “Pause” for the better part of a decade.
I’ve been waterlogged; dreary, heavy, and of little use to anyone, most of all myself. Since my shunt was placed, I’ve been slowly wringing out that excess fluid from my poor abused cerebral tissues. While the surgery itself provided immediate and obvious relief (as those who were there with me can attest), I don’t think anyone knew what to expect after my diagnosis. I saw it as a death sentence, albeit a painfully protracted one; as inevitable and inescapable as the eventual implosion of the sun. And considering shunting a patient with hydrocephalus is not a cure (Perri’s failure this past year places me firmly in the 50% of patients who never make it to their first shuntiversary), the truth remains that, in the end, hydrocephalus will be the death of me. The question is, as it is for anyone and everyone else, is whether I can find a way to live before I implode. For the first time in an ineffably long time, I think the answer to that most vital of questions is “yes.” Will it always be easy? What is? I will approach everything the only way I know how: by going with the flow.
“Water does not resist. Water flows. When you plunge your hand into it, all you feel is a caress. Water is not a solid wall, it will not stop you. But water always goes where it wants to go, and nothing in the end can stand against it. Water is patient. Dripping water wears away a stone. Remember that, my child. Remember you are half water. If you can't go through an obstacle, go around it. Water does.”
Margaret Atwood, The Penelopiad
