Laura

I was born in New Jersey, after my mother had a mostly textbook healthy pregnancy. During delivery, she experienced a prolonged labor that lasted 24 hours, which prompted a C-section. Afterward, I was able to go home fairly quickly. 

At home, all I did was cry, refuse to eat, and struggle with severe indigestion. Then my eyes began sunsetting, and my fontanelle started to bulge. After six weeks of continuous distress, I was diagnosed with hydrocephalus caused by Dandy-Walker syndrome. We moved to New Hampshire so I could receive care at Boston Children’s Hospital.  

I experienced some developmental delays early on. I couldn’t hold my head up until I was a year old or walk until I was two, but I was speaking in phrases by nine months and never stopped talking after that! I could read and spell well above my age level, though I later realized my comprehension skills were behind. Despite these challenges, my love of learning has saved my life over and over again. 

I was bullied at several points throughout my life, but I gained a new sense of perspective after a conversation one day at the mall after school. I realized the bullying was never really about my hydrocephalus. The kids from school were envious of my home life and too young to understand or express those feelings in a healthy way, so it came out as bullying me instead.  

I think it’s important to remember that bullying often affects anyone who doesn’t fit the “average”. That amounts to most of us! 

For a long time, I was healthy and rarely needed to visit doctors’ offices. Then, in 1988, I had a major emergency surgery. It’s one of only three surgeries I’ve ever had and, thankfully, the last one to date! 

I worked for 20 years before stopping in 2019. After experiencing PTSD related to a workplace event, I began receiving Social Security Disability Insurance (SSDI). I have also volunteered for various issue-based campaigns and even ran for State Representative in New Hampshire. Although I lost by only 36 votes, it was still a great experience. 

I’ve endured a great deal in my life and learned many lessons along the way.  One of the biggest lessons was learning to move on from circles and environments that were not meant for me.  

I stopped drinking in 2019, which allowed me to be a better example while doing homeless outreach. Like many cities, the area where I live is facing a crisis. But my candid, outspoken nature, often with a twinkle in my eye, has helped me connect with people and guide many of them toward the help and rehab they need.  

I believe the trauma I carry from living with hydrocephalus is not all that different from the trauma that can lead others to addiction. In many ways, we are family, and we have to look out for each other. That’s what I believe. 

I’m uncertain about how I will navigate the future when it comes to surgery. As they say, even the strong and independent ones need help too, and it’s true. 

After years of denials, I finally found a certified Physician’s Assistant (PA-C) in neurosurgery at Dartmouth Hitchcock Medical Center (DHMC) willing to see me. It honestly feels like a boulder has been lifted off my shoulders. I still don’t know how I managed to go so many years without a doctor. 

Until then, I enjoy all my city has to offer, giving a little while remembering to take in a little too. I crave daily motion, whether that’s walking local trails or seeking out wildlife even in the middle of a big city. After choosing a vegetarian lifestyle, I discovered a love for cooking clean, interesting meals and exploring new restaurants. 

And, after beginning successful treatment for central sleep apnea, my dream is to start running again, like I did in junior high. The sky’s the limit! 

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Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest, regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

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