James, 36

James on the Kosi Summit stone.

I was born in Winchester hospital in England one month early due to an accident. While I was being born there were complications that resulted in the onset of hydrocephalus and the need for a shunt.

When I was 10 months old the original shunt became blocked and had to be replaced. I then had surgery at ages 6 and 11 to lengthen the drainage tubing to allow for growth.

I lived a relatively normal life as a child. My sisters and I climbed trees, played games in the forest and had fun, but there were some things I wasn’t allowed to do such as play contact sports.

Every time I was told I couldn’t do something because of my head it was like an elastic band being stretched. Then when I was finally given the go ahead from my doctors at age 11 to play rugby, cricket and basic martial arts to help me with bullies it was as if the elastic band had been released. I threw myself into these sports head first. Pun intended.

As a teenager I never thought my condition was that serious, despite the surgeries, because my parents kept me so safe. I never told my friends at high school as it hadn’t been an issue while at school. I hadn’t had any problems or surgeries since I was 11. I was very lucky.

In 1996 my family moved to Perth, Australia to be around my mother’s family. Both junior and high school were uneventful with regard to the hydrocephalus, but unfortunately knee injuries took its place.

My family didn’t let me focus on the condition. I just got on with life. My parents would try and steer me away from potentially dangerous activities but my family are very competitive, adventurous and active. I grew up that way anyway.

After high school I went to Notre Dame University to pursue a Bachelor of Communications. I wanted to be a sports commentator. I graduated in 2006 and began volunteering at a radio station; however I spent 2004 and 2005 in and out of the hospital having two knee reconstructions as a result of the many knee injuries I sustained playing soccer while in high school.

That time spent in the hospital gave me time to reflect on life. I volunteered with many organizations and built houses in Cambodia while working in hospitality and the radio station. When I was offered the chance to work with people with disabilities by a friend, I jumped at it. I felt an affinity with many of my clients, knowing that while I was living a full life, it so easily could have been very different for me.

In 2016 I was assaulted by a client out of the blue and the force of the punch and my head hitting the ground led to the gradual loss of my sight and my ability to walk. On March 23rd, 2017 I received my third shunt to fix the new problem.

When I woke up after surgery and saw my mum clearly at the foot of my bed, I realized that the constant excruciating headaches were gone. That was the best day of my life thus far.

The last 3 years have been a roller coaster ride for many reasons. After an MRI check-up in 2018 the radiographer told me that I had a bleed of CSF and blood that covered almost the entire side of my brain. They couldn’t understand why I wasn’t in pain or how I could see or walk. They rushed me into the ER at midnight and prepped me for another brain surgery, but after speaking to my neurosurgeon, they called it off because I wasn’t in pain.

My neurosurgeons have asked me to donate my brain to science when I die to see how it has coped so well with the hydrocephalus and the significant CSF/blood build up. They told me that my brain has essentially created a new ventricle to accommodate the bleed.

One of my passions before the assault was mountain climbing. I want to be the first person with hydrocephalus to climb the seven summits. I climbed Australia’s tallest mountain, Mt Kosciusko in 2011 and Mt Kilimanjaro in Africa in 2014. My neurosurgeon has told me that it’s still possible for me to climb mountains, even Everest!

I know that I’ll need more shunt revisions in the future – 30 years without a revision was remarkable I’m told – but I want to continue living my life to the max and giving back to the world as a way to thank all the doctors, nurses, friends and family who have helped me throughout my life. I also know that I am a very lucky man for so many reasons.

My legal case is now over and I’m currently doing a return to work program and looking forward to working again in the near future. I’m excited for what the future holds. Lastly, to my parents, I can’t thank you enough. I couldn’t have made it this far without you.

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 posted on our website and through social media. Submit your story today!

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For questions, email: natalia@hydroassoc.org with the subject line “Share Your Story”.

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