Hydrocephalus: A ticking time bomb…

Hydrocephalus: A ticking time bomb…

You don’t know when, you don’t know how…but, you know it will.

Each day goes by, turning into a week, a month…a year.

Moments of happiness, moments of sadness and…moments in between.

Regardless thereof…the aching pain inside your head reminds you of your own reality.

People come and people go, “each to their own”, as the saying goes.

We live, we learn, we sleep, we wake…we all will surely cease to exist.

Life’s one guarantee…

Your normal isn’t my normal and my normal is nowhere near anyone else’s…

What each new day will bring, no one truly knows but, an end and a time to close your eyes…now that, everyone knows.

The world has sadness, the world has pain but, amidst it all, there’s joy, beauty and things which we are yet to see…feel…be…

This realm is but a passing phase, a placeholder for better things to come.

You think me mad for thinking this way but, tell me…What would you do if you lived with a ticking time bomb inside your head?  How would you view the world..?

Celeste A. Daniels

Not everyone who has Hydrocephalus is born with it.  We don’t all experience a rocky road, allofthetime.  Some are fortunate enough to lead a reasonably “good” life.

But others…

I often feel like my posts shouldn’t be all doom and gloom.  (For the record, that’s never my intention – just saying it like it is, no bullshit). Someone even challenged me on this once.  Sigh…

Just because my reality is not your reality, doesn’t make it any less true…

I suppose what some don’t understand, is that I see the hurt and pain of those who are worse off than me.

Having Hydrocephalus, is literally like living with a ticking time bomb inside your head.  You just never know when the next episode will hit and when it does, you don’t know how bad it will be.  You’re just relieved when the ride comes to an end and, you get to walk a little further through the theme park.

Except, this is no joy ride…

Sometimes, there are moments where you actually allow yourself to just enjoy it, no matter how small.  Just for that moment, you believe it’s all going to be OK, knowing fully that there will come a time when you may need to take another ride on the Big Dipper, through no choice of your own.

The brain is a delicate body part, the master of “our” universe and, Hydrocephalus sits in the drivers seat.

My husband said to me the other day, while we were preparing dinner, “Do I need to take you back to Robin Banks?”.  (I smiled silently to myself, back turned to him and, responded with silence).  He was listening to me ramble on about making sure I choose the next doctor I consult with wisely, and get them up to speed with my medical history, for if and when I need my next brain surgery.  I don’t know why but, I always think of the next time…I feel more in control when I’ve got “everything” in place.  Control freak…or notwho’s to judge?

But, I also know, from experience, that I may not be in a position to speak for myself or make my own health care decisions. (He had to give the go ahead for my emergency ETV to be done, after 2 failed shunt replacement attempts, while I was in a comatose state). Call it the effects of a bad surgical experience

I do fully realise that that time may NEVER come.

Nonetheless, it’s not simply a mind over matter condition, as Robin teaches, for things unrelated to Hydrocephalus.  I sincerely wish it was as simple.

A ticking time bomb…You may not see it but I sure do hear the tick of each hand.

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

8 Comments

  • pjm19606

    February 10, 2019 at 5:33 pm Reply

    Skye, once again, you speak volumes. I’ve posted before so I’ll keep this brief. My last hospitalization (2 months) put me down without the characteristic “headache”. I simply collapsed in the street. Apparently, I have what is known as “Zero Pressure” hydrocephalus. My current shunt valve never closes and I don’t over-drain. I no longer drive and being alone (which I am often still) is a potential risk. Thanks for reading! Philip

    • Skyewaters

      February 10, 2019 at 9:19 pm Reply

      I can’t say I’ve heard of “Zero pressure” Hydrocephalus before. The challenges and risks we face with all of this, is what others need to understand. Thank you for sharing Philip!💙

  • Therese

    February 10, 2019 at 12:39 am Reply

    I like you have thought about when my shunt will break. My last revision was when I was 14, I’m 32. We all know they’re only supposed to last 7-10 years if that. I’ve had headaches ever since my revision.I’m so introverted that I just found the love of my life. I’m just happy when I told him my whole story that he didn’t go running the other way and he’s supportive of me going for my teacher certification and driving where others are not.

    • Skyewaters

      February 10, 2019 at 1:15 am Reply

      I don’t think there’s any harm in being aware that shunts don’t last forever. At least you know the possibility exists and that’s positive.
      Congratulations on meeting someone to share your journey with. It does help when we have their support and understanding 😊. All the best with your teaching certification 💙

  • Ron Patrick Kelleher aka Hydropioneer

    February 9, 2019 at 2:15 pm Reply

    You can have a heart attack at any given time. I use to worry about it but it won’t stop it from happening. Just a rocking chair you can rock and worry all you want but after 30 minutes an hour a day the rocking chair will still be in the same place. I use to put off things and lay in bed until hopefully the pain subsided but now at middle age I will forge ahead pain or not & pay for it later & believe me I do, I love your articles Celeste keep up excellent work -Ron Patrick Kelleher (Hydropioneer)

    • Skyewaters

      February 9, 2019 at 4:06 pm Reply

      Thank you Ron for sharing 💙

  • Karl Rothko

    February 9, 2019 at 8:35 am Reply

    Anything can happen at any time, anyhow anywhere, and you have to be forever vigilant. Dont I know it. I have stared death in the face more than once. And its effects are life changing. Precoscious puberty, and short stature, among them. And the learning difficulties. One cannot be dismissive of hydrocephalus. Keep your eyes open all the time. Watching, waiting. Don’t I know it.

    • Skyewaters

      February 9, 2019 at 9:19 am Reply

      The sad reality Karl. Thanks for speaking out💙

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