That Moment You Realize You’re Not Alone on This Journey…

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Madeleine DarowicheSophomore year of high school was not at all what I had expected it to be. It was worse. It was like a terrifying amusement park ride that you can’t wait to get off. I had nearly failed geometry; I just couldn’t get it. I was very displeased with my academic performance. I had been left feeling like the light at the end of the tunnel was nonexistent. I would soon learn that I was not alone; other people like me were feeling the exact same way. I could not have been happier when that final bell rang for summer vacation because I was excited to be traveling later that month. The reason for my excitement was because I was about to leave for what would be a memorable trip. I was about to attend my very first Hydrocephalus Association conference in Bethesda, Maryland.  At that time, I did not know just how much of a lasting impact that short trip would forever make on my life; at that time, I was highly unsure of what I should expect of the conference. What I also didn’t know was that it would only take that very first day to create an entirely new world for me. The only thing I knew for certain was that I would be meeting people just like myself who had fought and overcome one of life’s most difficult battles: brain surgery.

I was relieved to finally arrive at the hotel late that night; day one of the conference would be a long day. It would also prove to be the instant my life would completely change forever. The first session I attended involved meeting with other teenage girls who have hydrocephalus like me.  I was unexpectedly overwhelmed by this moment because I had never met a single person with hydrocephalus, let alone so many people. For my entire life, I had always thought I was socially awkward and just different from my peers. Those were just thoughts in my head, but I was fully aware of one reality: I look much younger than I actually am. It was at that time that I experienced the revelation of a lifetime: these girls acted and looked almost the same way I do. We all had some form of a social difficulty as a result of the hydrocephalus. These difficulties – ranging from trouble with understanding sarcasm to making and maintaining eye contact – affected us differently, but shared one commonality: they were all detrimental to our confidence and well-being. It helped that we were all there for each other and knew exactly what we had all been through with the shunt revisions and replacements. Despite the vast array of social problems we had faced, we had each endured two common hydrocephalus-associated issues: struggles with geometry and challenges with our spatial reasoning. Realizing that I was not alone in these struggles was so incredible.  I was able to talk with people who understood me – and I understood them. In that one single day, I knew life would never be the same. These were people who didn’t need any explanation at all about things other people might find quirky in me. I finally felt I had been accepted. It made me feel that I was more than just someone with a medical condition.

The very next meeting that day was about the Teens Take Charge (TTC) program, which helps young adults do the following: connect, advocate for hydrocephalus awareness, and transition into adulthood with this chronic medical condition. Listening to the TTC Advisory Council speak, I knew immediately that I wanted to be involved with the program. After the meeting had concluded, I spoke with the program’s liaison about how to get involved. She suggested that I could write a TTC blog, which I later did. I will always remember this one particular day of the conference because it changed me in ways I never thought could be possible. It also ignited my fervent passion for educating and raising awareness about this serious medical condition that I live with.

I would not be the person I am today had I not been at the conference that first day. Nothing in this world can replace the relief and happiness I felt when I understood I was not alone. To be able to finally have the freedom to share my journey with hydrocephalus with people who could relate was freeing. I will forever consider it a necessary and welcome turning point in my life.  I didn’t realize it then, but I had to get my experience out in the open. I will never take that time for granted; these people really listened and empathized.

After I arrived home, the reality sunk in of the many priceless things I gained from that day and from the whole conference experience: a better understanding of the person I am, confidence, and better social skills. I had evolved into a different person. Prior to the conference, I had very little confidence in myself. I felt confident after conference because I had people to turn to when I faced my challenges. I learned to be less fearful when speaking to people, despite the difficulties I continue to come across. I discovered that I was normal; nothing was wrong with me at all. From that moment forward, I knew that I could accept myself for who I am. Hydrocephalus is part of my identity; however, it does not define me, as I found out. Like a Phoenix rising from its own ashes, I literally felt that I was born anew.

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