Hy·dro·ceph·a·lusˌ(hīdrōˈsefələs/): It’s a condition characterized by the brain’s inability to circulate cerebrospinal fluid that cushions the brain resulting in a buildup of fluid and high amounts of pressure on the brain. It’s an incurable condition occurring in 1/500 people either from birth or acquired sometime in later in life.The treatment is almost always invasive brain surgery, either to place a valve and tube to drain fluid, called a shunt, or drill a hole to hope that the body reabsorbs the fluid. Both solutions, unfortunately, are temporary and have extremely high failure rates - virtually all need repairing or replacing in ten years.
Honestly, my personal experience with the condition has been minimal. Yes, I was diagnosed at birth and have had a couple of brain surgeries, but my daily life has never been dependent upon the condition- something I’ve taken for granted. The only hiccup I’ve encountered was an emergent revision surgery at the start of my kindergarten year and the fragmented memories from this event, both intentionally and unintentionally forgotten, still haunt me to this day.
I remember the hospital waiting room, the anxiety and pain around me. I remember going in for the seemingly-never ending imaging scans in the cold, stiff and sterile rooms. The machines methodically whooshed around me with an overwhelming, lulling white noise while the heavy lead blankets lay on me. I remember laying on the operating table while the bright lights shone on the many masked soldiers that quietly and quickly marched around. The surgeon arched over me, trying awkwardly to make acquaintance, while it only came across as yet another stranger who somehow knew my name without my saying it. It was one of many confusing moments throughout the experience.
Perhaps all these years, I’ve searched to solve some of the confusion I had felt. I suppose they were simple experiences, only made complex by my inability to take it all in at once and process it at the time.
Apparently the surgery went well and recovery, while lasting longer than anticipated, was also better than predicted. I went on to continue elementary school with no intellectual or physical deficits, something 82% of those with Hydrocephalus cannot say. I began dancing competitively and enrolled in an academically-gifted program and focused on being an older sister to two younger siblings. Other than the physical battle scars, it was not a part of my daily life.
In fact, up until my senior year of high school, it was barely on my mental radar. When a friend asked me for a story to include in his collection of “untold stories of people like you”, later to become a published novel, he had no idea the story I would give. I immediately knew that I wanted to tell of my journey with Hydrocephalus, even though I had never taken time to truly process that journey and really cope with the chronic condition- let alone publicly talk about it.
When I began telling my story, the true intent of the book really came to fruition. So many people, like me, have “untold stories” and silent battles that hide beneath masks of productive, sociable facades. It’s my hope that many more people begin to open themselves up and share their story because the results can be extremely impactful. But as we continued writing down my story, I didn’t realize at the time that it would open a pandora’s box of emotions and begin a period of personal growth and struggle that’s still ongoing. I began privately searching for clues to my fragmented puzzle of information because I knew the facts about my experience with the condition, but that was about it. I didn’t know how it had affected my family, what could have been, or what others with Hydrocephalus experienced.
I began getting involved through social media campaigns to familiarize myself with the community of “hydro warriors” across the nation. I quickly discovered a small but active group of individuals sharing in their struggles together online. I also noticed that many of them did not look like I do. Some used wheelchairs, some lived at home as adults, some posted pictures immediately after surgeries and hospital stays. Meanwhile, I was in my dorm room eating cookie dough in bed, wearing a trendy sorority t-shirt, and binging on Netflix in the background while procrastinating homework.
The stark difference between myself and those online was off-putting. I began to doubt myself and my identity as an individual. How could I identify and relate to these people when we barely had anything in common? I sought so long for an answer of how to assimilate into this community. All that resulted was guilt. Why was I the one who would roll out of bed in the morning to go to her college classes without worrying about headaches or shunt revisions? Why would I assume a normal life with an automatic progression of high school, college, internship, independent life and building a family? Moreover, since I am given these opportunities, how in the world am I going to fully make use of the great blessing?
In addressing these questions, I’ve done plenty of research- browsing individuals’ stories online, virtual support groups, youtube videos of surgeries, and reading all the pamphlets and statistics available on the internet. But all the researched facts and stories won’t tell me whether this condition will interrupt my term as an exec officer in my sorority or whether it will interfere with my building a family of my own. Shunts don’t last forever and mine is now
15-years-old. For some, that would seem like an eternity. When each little ache or dizzy spell feels like impending doom has appeared around a dark street corner, I have to remind myself that most of the time these intermittent symptoms are mere shadows.
Scenarios of hydrocephalus interrupting my life float around my head with no solutions except to know that if and when it happens, I’ll be ok. I have a great support system (whether or not they know I’ve recruited them to be such) and I trust a God who watched over me before, and will do it again. Until then, the worst part is the waiting. Waiting to see if headaches resolve on their own, waiting for test results, waiting for relief, waiting for a cure. My guilt, questions and fears haven’t been resolved yet, and maybe they never will, but I’m learning so much about myself in pursuit of these answers. Most of all, I’m learning just how faithful God is to take care of me and work this condition toward the betterment of myself and my family.