Hi, I am John. I was born with a Hydrocephalus, in the common language referred to as “Waterhead.” Some also call it the invisible disability, for the fact that, although it is highly physical, one cannot see it.
The Story is free for you to decide whether it is sad and rather speaks of a deteriorating human being or an uplifting one. What it definitely should not be understood as is a story of pity. See, the “Waterhead” comes in many forms, some less complicated than others. Some lead to many complications, and some are rather easy to deal with.
I have been at Maastricht University for a comparably long time now, given some complications in the form of brain surgeries arising throughout the years. I do not see it as dark as some might think. I try to take every second in a positive way, embracing the people I meet and met throughout the years as well as the knowledge I gather.
With six brain surgeries throughout the time I am studying at Maastricht University and somewhat 30 over the course of life, one can imagine that despite the positive attitude, not everything has been sunshine and roses.
There were times when I wasn´t even able to brush my own teeth, to be exact. Though, I have always been a pusher. Gathering knowledge at a University (where people with my impairment do not often get to be) has been something that kept me going besides my family and friends. University gets a different meaning when you deal with vast pain and the danger of a deteriorating mind on a daily basis.
Without petting my own back, I am usually quite literate when it comes to writing and speaking, however having had to deal with brain pressure on a regular basis, my ability to speak, learn, and comprehend things faded multiple times throughout the years. I always fought my way back and had help in the form of good student counseling, friends as well as family. At the end of the day, though, I had to do it myself cause for the impairment being invisible, only a hand full of people would understand the matter.
In order to get the load of knowledge required for each course into my head, I use posters that I create myself for the content of every week. Those I hang everywhere in my apartment, even on the toilet. That way, the knowledge sinks in subconsciously.
Another thing that has helped me immensely in keeping a positive focus are coffee beans. No, not the way you think. I used them as a token. In the morning, when I get up, I would put a bunch of coffee beans in my right pocket. For every wonderful little detail throughout the day, like laughter, I share with someone, a nice conversation, or simply the smell of summer rain, I would shift a coffee bean to my left pocket. At the end of each day, I would count all coffee beans in the left pocket to re-live all the little, beautiful moments that we as human beings tend to overlook in our daily lives. Besides one starting to embrace the tiny things, you smell like roasted coffee beans on a constant basis, so it kind of benefits everyone.
Nowadays, I still do the very same thing but with imaginary coffee beans. No, I am not nuts just embracing life. I am not healed and will never be. Still, my doctors have luckily found a way to deal with the pain (for now), engaging in an experimental treatment, adjusting my implants in a way never done before. I am grateful for the place I am in and the people I keep meeting, still embracing life with every second.
Concluding the message of my sharing: No matter what the world tells you, keep pushing and fighting for your dreams.
John Koch
