Navigating Social Interactions Growing Up with Hydrocephalus

Dan Kricke shares his voice in our adult blog series.

By Dan Kricke, Guest Blogger

Social interactions as a kid with hydrocephalus were always a delicate balance. Not being a total dummy, I knew enough about my condition to be able to explain it in layman’s terms from a young age. I remember always going to the first day of an elementary school in whatever grade I was in with a note from my mom explaining in further detail what hydrocephalus was and why if I complain about a headache, it wasn’t the act of a kid trying to just get out of doing a homework assignment. Looking back on it, I‘m surprised I never took advantage of the condition to fake a headache for a free day off now and then. Seems like a missed opportunity.

But where were we? Right, social interactions! So the teachers were mostly satisfied by the letter from home. I’m not sure if they ever followed up with my mom for more info or went to a library to read more or whatever, but they always treated me fairly, I thought.

Dealing with my peers was something I was less prepared for. Kids can be unpredictable. I was fortunate to have a good group of friends as a young kid, but I don’t recall even my interactions with people I wouldn’t consider “friends,” ever being particularly harsh when it came to hydrocephalus.

I think fear of having to talk about being a “hydrokid” is one thing that feels overblown now that I’m older, though I look back and understand that for a kid, it was overwhelming. As I said above, I knew enough about the condition to hit the nuts and bolts to anyone that wanted to know. But I never wanted to turn it into my whole story. As a kid, I loved Michael Jackson and WWF and Nintendo. I wanted to create video games, not have hydrocephalus. And I didn’t want to go into a long discussion of hydrocephalus with anyone, let alone someone my own age. My story always boiled down to – you and I both have water in our brains but yours drains and mine needs help. But I remember being so sensitive to the whole topic, even though I can probably count on one hand the number of times it came up during my formative years.

Mostly it was the shunt that caught other kids’ eyes. No one ever started a conversation saying, “So I heard you have hydrosnuffaluffagus?” It was always, “What’s that vein in your neck!?” And again, “always” happened like five times ever. Maybe a lot more kids wondered it, but it feels now like I spent more time worrying about it than it ever becoming a real issue. And in retrospect, it wasn’t like they were even making fun of it. It was just that sort of no-filter question that a child can get away with asking; that they’d probably just Google now. Mostly it was about a kid that wanted to know why I had something they didn’t. A real asset, that tubing!

Up until I was about 12 years old, I had spent a lot of effort trying not to be different from other kids. I’m not sure whether everyone operates the same way, but I didn’t want to stand out for fear of being teased. And, like I mentioned, I didn’t want hydrocephalus to be my whole story. Having a litany of medical problems can be hard to hide, but I did my very best, at least until I couldn’t anymore because I was about to miss a few weeks of school for a medical procedure that most 12 year-olds have never heard of before. Having a “weird vein” in my neck that I had to explain to one or two kids a year was very different from explaining why I’d suddenly be out of class for a prolonged period of time to have brain surgery.

Who would like me when they knew I was so fragile? This, more than the IVs or the shunt revision or anything else, was a huge fear to me. It was a Baker-Wong pain scale 8 or 9 equivalent, as far as I was concerned. Girls were just starting to become an important factor in my life and now they were going to see me with a bandage and stitches on my head? This was not an ideal situation, or so I thought. What I learned is that you’d be surprised by who you can end up drawing support from.

My surgery when I was 12 was right around some sort of Holiday Sing-A-Long that my school was putting on. Basically, we went to a local mall and sang. I don’t remember it well because I wasn’t going to be in it after I had just had a shunt revision. If I remember right, I hadn’t been seen in school and by friends at that point for at least a few days, though I was out of the hospital for at least a couple.

I went because one of my brothers wanted to bring me to see my friends at the sing-a-long, probably thinking (correctly) that it would be good to see my friends for a bit and get out of the house where I was recovering. Because of everything mentioned above, I was so nervous about going. I may have been given a wheelchair for the expedition in case I got tired. I can’t remember. But I do remember the kids coming up to me and being seemingly glad to see me, to see my cool stitches, the whole thing. I wasn’t terribly popular or anything, but I remember everyone being exceedingly nice. It felt so good to feel like everyone cared.

Looking back, it seems so silly to think people were going to make fun of the kid with stitches in his head who just had a really scary-sounding surgery. What kind of terrible kids would do that? My point in telling a story I only half-remember is to say that you shouldn’t be scared of support. The support of people you’re close to seems guaranteed, but even people you’re not that close to tend to go out of their way to be nice when you’ve been through a trauma. They can help you feel better and you shouldn’t be afraid of them.

And although I was nervous at the time about being perceived as different from the other kids in school, it feels funny now to realize everyone is different and that’s perfectly fine. We all have something we’re going through, whether it’s a medical condition or something else. I’m not saying you need to run up to everyone you meet and introduce yourself by talking about hydrocephalus, but you should never feel bad for having it and you shouldn’t feel scared to tell people about it if they ask or if you just feel the need to talk about it. I spent way too much time with built-up anxiety about having hydrocephalus when I was a kid and whenever I did talk about it, the experience was never as big a deal to my classmates as it was to me.