The We Shall Overcome Series is a collection of stories from women who have faced hardship with courage.  We hope these stories inspire and encourage you as much as they have us.

Meet Emma Jane and her battle with hydrocephalus.   
Emma Jane Maurer
My story is one of healing. I was born with a condition known as hydrocephalus, which is where the cerebral spinal fluid does not drain off the brain properly. To treat it, I had a shunt placed in my brain at one day old. The shunt helps guide the fluid from my brain into my abdomen, where it is absorbed.
 
I don’t remember exactly when I realized the details of my medical condition, but I always knew I was different. Even though I looked normal on the outside, my peers could sense that there was something different about me. Nevertheless, I still tried to remain positive and took my uniqueness in stride.
 
I lived a fairly normal life for the first ten years, and my hydrocephalus was just an afterthought. Sure, I knew I had it, but it didn’t affect my ability to lead a normal life. I continued to have regular CT scans and checkups with my neurosurgeon to make sure everything was OK, but aside from that, life continued on as normal.
 
That all changed shortly before my 11th birthday.

"I don’t remember exactly when I realized the details of my medical condition, but I always knew I was different."

Instead of ordering a routine CT scan, my doctor had recommended an MRI instead. Looking back, I’m pretty sure he knew something was wrong—something that could only be detected through an MRI and not a CT scan.
 
The results of the scan were not good. The scan showed that my brain’s ventricles had enlarged—meaning something was preventing the fluid from draining off.
 
I remember being so dumbfounded that day. I was as healthy as could be, with no signs of sickness. Yet the very mechanism that allowed me to live was failing.
 
My doctor gave me two options:  either I have surgery to revise the shunt, or I just let nature take its course and we would deal with the problem when I got sick. 
 

"I remember being so dumbfounded that day. I was as healthy as could be, with no signs of sickness. Yet the very mechanism that allowed me to live was failing."

  
My parents and I went home to discuss our options. We knew that brain surgery was risky, so we were hesitant to agree to a surgery that could harm me rather than fix the problem. Especially considering I was so healthy to begin with. However, we also knew that, as my doctor had warned, it would only be a matter of time before we found ourselves in an emergency situation.
 
We decided to have the surgery, which took place one day after my 11th birthday. I remember going to school on my birthday, where we told my classmates what was about to happen. I wanted so much to be honest and open with them, but the reality was I was just too scared and upset to tell them myself. My teacher had to explain my situation to them for me while I struggled to hold back the tears.  
  

"It would only be a matter of time before we found ourselves in an emergency situation."

 The surgery should have been an easy procedure. I was supposed to stay overnight for observation and then go home the very next day. Which I did, but only to return to the emergency room the following day. I had another surgery, but this time, I stayed in the hospital for one week. Afterward, I was fine for about two months, but I found myself back in the hospital needing another revision. This cycle of hospitalizations and surgeries continued for the next five years. In total, I have had nine brain surgeries to repair my shunt. This may seem like a lot, but it is not. There are hydrocephalus patients who have more surgeries in a year than there are days.
 
After these first two surgeries, I was scared to return to school for fear of what my peers would think of me. Although the neurosurgeon only needed to shave a sliver of my hair along the shunt tract to operate, he allowed one of his residents to do it. A resident who ended up shaving close to half of my head. Thankfully, the remainder of my curly hair was enough to cover the bald spots. But I was in such a state of shock that it was hard to convince me otherwise. I was afraid my peers would mock me and say I had cancer due to my lack of hair.
 

"I was scared to return to school for fear of what my peers would think of me."

That said, it is only recently that I started to open up to others about my condition. My junior year of high school was the first time I told my peers my story from my point of view. My freshman year of college, I had this opportunity again as I gave another informative speech on hydrocephalus in my COMS 101 class.
 
But it was only within the past year where I truly learned to appreciate what makes me unique and to embrace myself despite my differences. In the fall, I took a playwriting class and based my play on my experiences with hydrocephalus. This was something I had wanted to do for quite some time, and playwriting class felt like the right time to do it since I knew I’d be getting the feedback I needed from outsiders who had never heard my story. Although my play is far from perfect, the process of writing brought me a sense of emotional healing and peace as I discovered new details about my medical history and clarified events, like some of the darkest moments in the hospital. I had 10 pages of my play read at the final in December.
    

" I discovered new details about my medical history and clarified events, like some of the darkest moments in the hospital."

Fast forward to March when I went to Paris with members of my university’s Theater Department over Spring Break. There we participated in humanitarian outreach by spreading a message of healing through the arts. In the months leading up to the trip, our team discussed possible taglines for the trip, themes that would represent the trip and appear on our shirts and other gear. We eventually landed on Isaiah 53:5— “By His stripes we are healed.” And while hydrocephalus is something I will live with until the day I die, I was restored to health after each and every brain surgery, (and in some cases, even better than before!)
 
When we practiced what to say if someone asked about the meaning of our shirts, I wondered if there’d be an opportunity to share my story with someone. I prayed for the chance to share my story because I didn’t think I’d have an opportunity unless I specifically sought it out. And one did. I shared my own story with a man I’d met on one of our outreach trips, and I wept when I learned that his story was a lot like my own.
  
  Since returning from Europe, I have been intentional in seeking opportunities to share my story. I’ve learning what it means to be yourself despite your differences. Like I said before my story is one of healing. I am no longer the girl who was too ashamed to tell her peers about her medical conditions when she had the chance. Instead, I know the impact and importance of advocacy and awareness. Even though I will never be cured of my condition, learning to live with hydrocephalus has brought me emotional healing and growth. Hopefully, my story can do the same for you.

Emma Jane was born and raised in Schuylkill Haven, PA, and spends the majority of her summers in beautiful Cape May, NJ. She is currently studying theatre and journalism, with a minor in French. She is not sure what the future holds after graduation, but hopes these plans include theatre, writing, traveling, and/or food. In her spare time, she enjoys reading, writing, traveling, cooking,  and going to the beach.