Dereck

I developed hydrocephalus due to a brain bleed in-utero , but it wasn’t discovered right away. A few days after I was born, a nurse noticed unusual seizure activity in my eyes, prompting further investigation. A CT scan finally revealed the brain bleed. At just three weeks old, I underwent my first shunt surgery. 

When I was five, my family moved to Michigan, and not long afterward, I underwent my first shunt revision due to severe headaches.  That surgery marked the beginning of a journey involving more than 500 surgeries to address shunt malfunctions and related complications. Each surgery brought new challenges. Sometimes I had to relearn skills like riding a bike or mastering basic schoolwork. I also faced complications such as infections, reopened sutures, and seizures. Despite it all, I kept moving forward. 

Growing up, I spent so much time in the hospital, that school felt like a blur. When I wasn’t able to attend school, a homeschool teacher would come to the hospital to stay on track academically. Socially, I faced many challenges. Often friends would say “I just saw you last week.” and would be surprised to hear I had brain surgery. I struggled to connect with peers who didn’t understand why I was absent so often. I vividly remember watching shows meant for younger kids while others were into things I couldn’t relate to, making it hard to find common ground.   

In high school, I discovered track and field, which became something I truly looked forward to. It gave me a sense of purpose and a goal to work toward. Despite the setbacks of having to relearn many activities after surgeries, I also enjoyed participating in other sports and activities, which became an important part of my life.  

As an adult, I’ve continued to face obstacles but have learned to adapt and thrive. I live independently in an apartment complex, with my parents close by for support. I don’t drive because of my health, but I’ve mastered the public transportation system. I have also learned to navigate my area with confidence, often relying on maps and a compass when necessary. Taking the bus to places like the mall for coffee has given me a sense of independence.  

I’ve also discovered a wonderful community of local fishing enthusiasts. They’ve become like family, teaching me new techniques and sharing their passion for the outdoors. It’s been a rewarding way to connect with others and enjoy nature. 

While I strive to focus on the positives and remain resilient, I recognize that the struggles I’ve faced have shaped me into who I am today. I’ve endured seven bike accidents and numerous concussions. At 14, I lost my vision for 24 hours, which returned as double vision. PTSD and anxiety have been constant companions, though it took years to fully understand and address what I was going through. Despite these obstacles, I’ve been incredibly fortunate to have an amazing support system. My family has always been by my side, lifting me up with their love and humor, even in the most frightening moments. 

I once dreamed of becoming a missionary or a nurse, and while my journey didn’t follow the path I imagined, it’s brought me unexpected fulfillment. I explored attending a technical school, but my reading and math levels made it difficult to continue. Instead, I shifted my focus to volunteering and connecting with my community. I’ve supported my local food pantry, served at my church, and helped with local events, sharing hope and encouragement through my story. Now, as a HydrocephalusCONNECT peer support volunteer, I have the privilege of helping others navigate similar challenges.  I remind them that they’re not alone and that brighter days are ahead. 

Living with hydrocephalus hasn’t been easy, but I’ve learned to embrace the journey. I’ve had some amazing experiences, like visiting Disney, meeting my local hockey team, and forming unexpected friendships. My experiences have taught me to look for the hope in every storm, no matter how small. If there’s one lesson I’ve learned, it’s that challenges and mistakes don’t define us, they shape us. They teach us to grow and help us inspire others. Today, I’m grateful for where my journey has brought me. Hydrocephalus may be a part of my story, but it doesn’t define me. It’s made me stronger and given me the chance to help others find their own strength and hope. 

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