Lindsay

My name is Lindsay, and I live in Southern California. My journey with hydrocephalus began before I was born, and at just three days old, I had my first shunt placed. I had the same shunt until I was 11, when longer shunt tubing needed to be placed. A year and a half later, I began experiencing headaches and vision problems so severe I was considered legally blind. Routine scans revealed my shunt had failed, prompting an urgent revision.

During this surgery, a new valve was placed at the back of my head. My neurosurgeon explained that this location would make future shunt revisions easier. Unfortunately, more revisions followed. A year and a half later, I took a fall that I do not remember, which marked the start of a series of brain surgeries, all during my freshman year of high school.

Initially, the fall was diagnosed as a concussion. But four months later, I began experiencing persistent headaches that no medication could relieve. Concerned, my parents took me back to the hospital. Scans revealed my shunt wasn’t working again, and I underwent another shunt revision. Although I sensed something was still wrong afterward, I did not speak up for myself. If you ever find yourself in a similar situation, I encourage you to express your concerns with your loved ones and medical team.

I was released from the hospital, but I only wanted to sleep. This worried my parents, so they took me back to the hospital, and tests confirmed the shunt was failing once again. This led to a full shunt replacement. Initially, the surgery resolved my symptoms; however, on my first day back at school, I felt a pop and knew something was wrong.  Little did I know I had popped my stitches, resulting in an infection that kept me in the hospital for a week and took a full month to fully resolve.

Just three months later, I began facing symptoms again —constant headaches and extreme fatigue. At first, tests showed that my shunt was functioning, and I was sent home. But my condition worsened, and I began losing more of my vision. My parents rushed me back to the hospital, and this time, my neurosurgeon personally reviewed my scans. Seeing how lethargic I was, he performed a shunt tap. Instead of cerebrospinal fluid (CSF), the shunt tap revealed blood, confirming the shunt was not working, and I was scheduled for another surgery. During this revision, only the valve was replaced. Today, I can happily say that I have not needed a shunt revision in 15 years.

The summer before my senior year of high school, I began searching for college scholarships and discovered the Hydrocephalus Association’s Scholarship Program. Inspired by my own journey, I applied during the 2013 cycle and was thrilled to be awarded a scholarship. The scholarship helped me afford community college and later transfer to California State University Long Beach (CSULB), where I earned a Bachelor’s degree in Liberal Studies with an emphasis in Human Development.

While at CSULB, I worked in the disability services office, assisting blind and low-vision students. One of my responsibilities was training students to use screen readers. I quickly noticed that many didn’t know how to navigate everyday objects like a keyboard, revealing a gap in their education. This experience inspired me to pursue a career in teaching students with visual impairments.

I enrolled in the Teacher of the Visually Impaired program at San Francisco State University. Traveling frequently between Los Angeles and San Francisco made me realize I needed better mobility support, which led me to apply for my first guide dog in April 2022. That decision changed my life. My guide dog, Eve, has helped me travel confidently, attend meetings across the country, and even guided me across the stage to receive my master’s degree.

I’m now in the final stages of earning my credential to teach students with visual impairments, with plans to complete it this fall.

If there’s one message I want to leave you with, it’s this: never give up, no matter how many obstacles hydrocephalus may place in your path. For those interested in following my ongoing journey with multiple disabilities and guide dog adventures, feel free to visit my blog, Adventures with Eve.

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