Greg, 39

Congenital hydrocephalusWhen I first thought about sharing my story a few weeks ago life got in the way and I didn’t start it when I meant to. Then I sat back and started thinking, “No one is going to want to read about my story.” So I just put it on the back burner.

Then, early last week I got a “reminder” email which coincided with my waking up with what I call one of my “sleeping in the wrong way shunt headaches.” I have these headaches maybe once every ten days or so, but they usually wake me up, I turn over, and once my shunt fills again and is no longer compressed, the headache goes away.

It certainly isn’t one of the headaches where I know something is wrong because it is accompanied by the other common symptoms of a blockage, sensitivity to light and vomiting until there is nothing left in my stomach.

It was the spring of 1993 when I had my last shunt revision. I was 17 and at boarding school in London. I don’t remember much about the day that it happened but I have vivid memories of throwing up in my Chicago Bears trash can before heading off to my boarding house infirmary and then finally making my way to the hospital. The next couple of days were a blur, but I do remember waking up to find my Mum, who’d flown in from our home in Denver, my twin brother and a bunch of the guys from my boarding house standing around my bed.

I had been in a coma-like state for a couple of days, which was very unlike my other episodes after surgery. Looking back on it now, that was a huge red flag. I used to bounce back from a revision and want to go home within a few days of surgery, but that wasn’t the case this time.

I would learn over the next few months that this was my first infection and, as I had never experienced one before, I was not aware of the signs to look for. Long story short, I found myself at Denver Children’s Hospital in April 1993, where I was not allowed to leave and was then prepped for almost immediate surgery.

What I thought was a shoulder strain from too much preparation for the upcoming cricket season was, in fact, referred pain as a result of a shunt infection. By the time I arrived at Denver Children’s and was receiving the proper care, my internal organs were distended with infection, my shunt was externalized and I was on a serious dose of antibiotics to clear out the infection before undergoing more surgery to replace my shunt system with the latest and greatest equipment of the time.

Those few months changed my life forever. For the first time that I could remember, my condition really affected my life. It cost me most of my 11th grade year, which in turn changed the course of where I would go to university and get my degree. When all was said and done, I ended up obtaining a Bachelor of Arts in History from the university I attended in England, and a few years after that I completed my MBA here in the USA.

The education system in the UK is very different from here in the US, but that is not the point of why I am writing this essay. I became very depressed after my shunt infection and subsequent surgery and missed time at school. My friends went off to university while I took a year off, retook some exams and ended up a year behind most of my close friends.

Looking back on it now, it seems silly that I felt that way, but I was 17 and then 18 years old and my life had changed due to my condition. For the first time in my life my hydrocephalus got in the way.

At this point in my story I should mention that I was born with hydrocephalus and the diagnosis was confirmed with a lumbar puncture (LP) when I was 6 weeks old. As a result of the LP being performed by a nurse using a dirty needle, I contracted meningitis and the right hand side of my body is weakened as a result. When someone looks at me, when I look at myself, you don’t see the hydrocephalus, but my right arm and leg are there for everyone to see, clear as day.

I have never made adjustments in my life for my hydrocephalus but I have had to for the weakness on my right side caused by the meningitis. That’s what is hard for me to come to terms with, not the hydrocephalus.

I don’t feel sorry for myself and I don’t surround myself with people that feel sorry for me. In fact, I feel sorry for people who treat me differently because of the way they look at me. They go to shake my hand and draw theirs back when I reach to shake it. One of the benefits, if that’s the right word, is that I am much, much stronger on my left side because I over compensate way more than I should.

I have learned over the years not to let my hydrocephalus, or the meningitis, define who I am. I won’t do that. I wasn’t allowed to do it growing up and it’s not in my make up to do it now. Have I had to make adjusts because there are things I can’t do? Sure, but I always find a way to get things done.

I guess the real motivation for me to write “my story” is that I am just a few short weeks away from turning 40 and I am going through a phase of making sure that I have all my bases covered because I am now a Dad and I have to think about others and not just myself.

I don’t dwell on it but what does scare me is how my two girls will react if, when, I have another shunt revision. They are still very young, soon to be 6 and 10, and they have never experienced Dad being sick. When they have questions it’s more about my right hand, due to the meningitis, and not about the hydrocephalus.

If it was just me, I probably would do what I have done ever since my last surgery 23 years ago and just not do anything because I am fitter and healthier now than I have been since I was in high school. But, if I ignore my condition, which I am prone to do, then I will be unprepared when something goes wrong and that isn’t fair to the other people in my life who rely on me, depend on me, care about me and love me.

That is what caused me to reach out to the Hydrocephalus Association in the first place. I needed to find a neurosurgeon in my area – we live in Denver – that is used to dealing with someone with hydrocephalus. Before I got to Children’s in 1993, I visited a neurosurgeon in the area who diagnosed my infection but was unwilling or unable to treat me. I can’t let that happen again. I won’t let that happen again.

If you have reached the end of this essay and are still reading, one thing that I want you take from this, whether you have hydrocephalus or know someone who does, is to not let the condition define who you are.

It is part of who I am. It changes the way I do certain things but it does not define who I am as a person.

I live a normal life, whatever that is. I am a son, a brother, a boyfriend, an uncle, a friend, but most importantly I am Dad to 2 incredible girls and I won’t let my condition affect who I am for them. I owe that to them. But most importantly, I owe it to myself.

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