Life without Hydrocephalus

Life without Hydrocephalus

Many of us who have this condition have been born with it and therefore don’t have any idea what it’s like to live without it. Also, you can’t miss something you never knew.

I posted this on Valentine’s Day and have had a few people ask: “What’s it like to live life without Hydrocephalus?

The short answer is; Anything you know right now, the opposite of that. (Hydrocephalus-related, of course)

A definite case of; “You don’t know what you’ve got until it’s gone…

A conversation a few days later sparked another thought process. When you have an incurable condition, it puts life into perspective. The things you placed importance on somehow fade in comparison. Like work stress or disagreeing with others on politics or even just listening to your children argue. It really doesn’t matter what it is because nothing seems as important or deserving of more energy. At least not in the grand scheme of life. Your will and fight to survive, to overcome the symptoms or to face another brain surgery (time unknown to you), is heightened.

Before my diagnosis, I know there were things which bothered me, caused stress that I couldn’t see through or even made me feel as low as can be. But, it’s different. Those were things I could actually do something about, for the most part. I was more social, spontaneous and, dare I say, happier! Living life without fear, in a manner of speaking, as you don’t hold back from doing things that could possibly put your shunt at risk. Alcohol consumption isn’t something you watch in fear of the headache triggers. Probably not good for you anyway but, there are certainly days where, I do feel like enjoying a glass or two of wine. It’s one of my triggers so I limit my intake these days.

One of the more important things, right now, is probably the financial saving of not having to go to 14 different neurosurgeons and neurologists over the last 14 years that I’ve had this condition. Or, the crazy amount of diagnostic tests I’ve had including the uphill battle when I’ve been symptomatic. The unnerving unknown and endless cycle, looping around your life.

Experiencing shunt failure and how all of that unfolded, left me feeling anxious and wary as I was dealt a fair blow at the time. A definite eye opener to the extent of this condition and the risks that come with surgery to treat it.

It was enough to scare the crap out of me and probably done more harm, than good, to my level of comfort with Hydrocephalus.

I felt more in control of my life…

Looking back, the strain on my relationships were trivial and insignificant in comparison. I could literally go on and on but hopefully this gives you some idea.

Also, I didn’t have to work as hard as I do now, like I mentioned in this post. I didn’t have memory issues, struggle with cognitive challenges or processing information, like I do now.

You can’t just forget you have it…

Knowing the person you were pre-diagnosis and looking at the one staring back at you in the mirror now, does a number on you, some days. I try not to let it bother me too much but ignoring the changes doesn’t serve me in any way either.

Therefore, I live, breathe and face another day.


  • James Laing

    February 16, 2021 at 10:36 pm Reply

    Thanks for that. I’ve been trying to figure out what normality looks like. Have you read the book Switched Oon by John Robison. It’s about a guy who uses magnetic therapy to moderated his autism. But the therapy changes his abiity to read emotions and redirects his life, It was my introduction to the notion of neurodiversity and led me to wonder what I was missing and if there is anyway to mend that damage, A number of neurologists are using magnetic therapy tor different brain injuries as an example,a%20risk%20following%20serious%20concussions. I was wondering how to get someone to test it on hydro,

    • Skyewaters

      February 17, 2021 at 12:31 am Reply

      Thanks for sparking the post!
      I haven’t read the book but it sounds interesting as well as the link you gave. It would definitely be a godsend if it can help reverse some of the effects we feel. Maybe you could get in touch with the researchers as a start.

      Thanks for sharing 💙

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