September is Hydrocephalus Awareness Month, a time to shine a light on a condition that has deeply impacted my life. For me, and many others, this month is not just about spreading awareness—it's about sharing our personal journeys of resilience, strength, and hope. Living with hydrocephalus as a traumatic brain injury (TBI) survivor is something that has shaped who I am. Every day, I'm reminded of the mental and physical strength it takes to live with a condition that most people can’t imagine.
What exactly is Hydrocephalus?
Hydrocephalus is a neurological condition where excess cerebrospinal fluid builds up in the brain, leading to increased pressure and potential damage. While there’s no cure, many of us live fulfilling lives with the help of a shunt. For me, it’s a Ventriculoperitoneal Shunt that helps drain that fluid from my brain to my stomach.
I’ve had seven brain surgeries for shunt revisions. Seven. Each one has tested me in ways that go beyond just the physical—emotionally and mentally, it’s been a constant battle. In 2019, things got really tough. After one of those surgeries, I was left immobile, confined to a wheelchair, and had to relearn how to walk. That was one of the lowest points in my journey, but it also became a turning point. It taught me a lot about my inner strength and what it really means to keep pushing forward.
Why Sharing Our Stories Matters
During Hydrocephalus Awareness Month, one of the most important things we can do is share our stories. Each story, each challenge, and each victory is a chance to connect with others who may feel isolated in their journey. I know that for me, it has been empowering to share what it’s like living with not just hydrocephalus, but also Chiari malformation and epilepsy. These conditions all intersect in complicated ways, but they also serve as a reminder of the power of community and support.
Living with hydrocephalus isn’t just a physical challenge. It has deeply affected my mental health too. I’ve struggled with anxiety, depression, and PTSD along the way. But, despite all of this, I’ve learned to advocate for myself. Connecting with others who truly understand this path has been a lifeline. It’s why I’m so passionate about raising awareness—not just in September, but all year long.
Celebrating Strength and Resilience
This month isn’t just about highlighting the challenges. It’s about celebrating the strength we’ve gained along the way. Despite all the surgeries, limitations, and emotional ups and downs, I’ve accomplished things I once thought were impossible. I’ve graduated with a bachelor’s degree, taken on hiking challenges, returned to my career in marketing, and—perhaps most importantly—raised my son as a single mother. I’ve also found an incredible hiking community of strong, supportive women who have pushed me to keep going. Together, we tackled the Mammoth March 20-mile hike, which was a victory not only for my body but also for my mind.
These accomplishments remind me that, despite everything, it’s possible to thrive. We’re not defined by our conditions—we’re defined by our resilience.
End the Stigma
And let’s address something important: the stigma surrounding people with neurological disorders being labeled as "brain damaged." Yes, many of us have experienced brain damage, but that doesn’t make us less capable. No disorder or illness defines who we are. While it can place limits on certain aspects of life, we are still fully capable of achieving greatness.
For example, despite having significant brain damage, I graduated Summa Cum Laude, with a 4.0 GPA, and was at the top of my class. So, let’s put an end to this harmful stigma. We are more than our conditions, and our potential is limitless. #EndtheStigma
How You Can Help
This month is a chance for everyone to get involved. Whether it’s donating to a foundation, participating in awareness events, or simply spreading the word, every little bit helps. From my own experience, I know how crucial it is to build a supportive network. So, take the time to learn more, share your knowledge, and reach out to those living with hydrocephalus. Together, we can create a world that is more understanding and supportive.
A Message of Hope
To anyone out there living with hydrocephalus or any other chronic condition—know that you are not alone. Some days are going to be harder than others. There will be times when you feel like giving up, but don’t. Every day you push forward is a win. Every small victory is a testament to your strength. I’ve been there, facing the fear, the pain, and the uncertainty. But even though the journey is tough, it’s also filled with moments of triumph and joy.
This Hydrocephalus Awareness Month, let’s stand together. Let’s share our stories and fight for more awareness and better treatments. Every voice matters, and every story is worth telling.
By sharing personal experiences, we can show the world that hydrocephalus warriors are more than just their diagnosis—we are survivors, achievers, and beacons of hope.
If you have #Hydrocephalus or know someone who does, feel free to connect with me or leave a comment below sharing your story!
With love,
CT
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