There’s bound to be casualties…

There’s bound to be casualties…

A diagnosis of an incurable condition will undoubtedly leave some casualties along the way. In this instance, I don’t mean anyone dying but rather loss of relationships.

Some of us are born with Hydrocephalus, some of us are diagnosed somewhere in-between and others, towards our last stretch of the runway of life. Being one of those diagnosed in-between, I can only speak from that point of view. However, I assume that from the opposite ends of the spectrum of life, there’s not much difference. But, I don’t like to assume (As the saying goes; it only makes an ass of u and me).

Like many other situations, people will come into your life and either be part of it for a reason, a season or a lifetime. Sometimes the reason becomes apparent and the relationship ends, (for better or worse). Sometimes the season comes to an end, and they move on (for better or worse). And, sometimes…they stick around for the long run…your lifetime or theirs. (These relationships are worth holding onto…)

An incurable condition added to that equation only complicates things…in time. However, I think people leave for different reasons. Some might leave because:

  • They have no idea how to handle it.
  • They don’t know what to say and experience too much discomfort.
  • They get tired of hearing you complain or talk about it.
  • They can’t see it, so don’t believe there’s anything wrong with you especially, when your “good” days, contradict the situation.
  • They become so used to your “good” days, that they hardly notice your “bad” days and carry on with life, not sparing a second thought your way.

Whatever the reason, the void left by some people in our lives, after they’ve left, can sometimes be a bit too much to bear. You are painfully aware of the ball and chain you’ve been lumped with by life. The feeling of isolation and loneliness overwhelms you!

There are days when you just wish for:

  • Things to go back to the way they were before.
  • To be understood by others and have a bit of empathy.
  • To have someone to talk to, when you need to vent or offload.
  • To feel better about the situation, with full support.
  • To have some form of validation that you’re not crazy, as you blindly navigate the obstacles in your way.
  • To have someone ask “How are YOU?”, genuinely wanting to know.

It’s hard to explain to others that:

  • The person you were before diagnosis is still there, however, things have changed…You have changed.
  • You are not unsociable.
  • You can go from feeling good to deathly ill in a short amount of time.
  • Plans aren’t made because you know the unpredictable nature of that which lives inside of you.
  • Your mood can be as high as a kite one minute and sink as low as the depths of the ocean, in no time at all.
  • You desperately wish you could be rid of this condition but wouldn’t wish it on another person.
  • The uncertainty and unknowns are a nightmare to deal with and scary as hell!
  • In time, the thought of brain surgery turns from something, which used to terrify you, into the one thing you hope to hear a surgeon offer. Simply because – you know it might be the only way for you to feel “better”, even if it’s only until the next time…

I have to wonder, the people who have left, did they ever think about sparing a thought for the person diagnosed with Hydrocephalus, who is centre stage, noticing people leaving one by one..? All this while the act is not yet done…

More importantly, how would that make them feel?

Not everyone is going to stick around, this is inevitable. It doesn’t make it any easier to accept but, in time, you do. And, you learn to move on, as best you can. Spare yourself the extra burden and let it go, don’t hold anything against someone who chose to follow the exit sign.

It’s a hard enough road to travel…

Instead, hold onto the lasting relationships you develop over time, there are bound to be people on your journey, who will fill the gap – if only for the most part.


  • R L Fry, Jr.

    February 2, 2021 at 3:26 pm Reply

    It gets extremely frustrating when family, in-laws, associates, whatever? tell one’s spouse, that, on a good day, “. . told you they were faking it”! After over 30yrs of married life, four surgeries, my late father-in-law, and now sister and brother-in-law, are taking up the gauntlet, to accuse me of faking my Hydrocephalus, when I am in my bed with the lights out, slleping mask on and earplugs in, to keep everything out!
    My spouse is a nurse, and knows the symptoms and signs of shunt failure.
    My brother in law, is also an nurse, but says, that’s not what the signs are.
    My one former neurologist from Johns Hopkins University Hospital, said that he could write a whole new case history, after seeing me go through the E.R. visits, test, poking, etc.
    I’ve also had resident’s ask my spouse, “is he faking this, just to get a fix?” When I give wisecracks, when asked the usual questions!
    One time I told one resident, that “I didn’t wish this on anyone, but with you, I’ll make an exception!” When Asked about my pain level, and said something like, “if you want me to scream, but it makes my hurt, because I’m in so much pain”! She walked out the door and got her chief resident. When he came in, I told him, him I didn’t want her back in, and then my wife said that when I stop making the wisecracks and get nasty look out, I was gonna crash on them! I’d think after being diagnosed over 56yrs ago at 5yrs and 10mos. I’d known what was going on!
    #FirstGen, #HydroPioneer, #HydroWarrior

    • Skyewaters

      February 2, 2021 at 7:39 pm Reply

      So much of what you say is true, I understand fully. It always amazes me how people who don’t actually have this diagnosis, know so much about what you’re “supposed to feel like”.
      Even if they do have it, we are all different and it affects that way too. So damned frustrating!
      Hang in there💙

  • Anonymous

    January 27, 2021 at 6:34 pm Reply

    Thank you!!! You are correct! I was divorced before my diagnosis. My ex just knew “something” was wrong with me. He and his family just assumed that I wasn’t happy. Ten years later, I am aware of my condition. Like you often mention, it is not something that even the people closest to us really understand. I definitely appreciate the ones who do;)

    • Skyewaters

      January 27, 2021 at 8:54 pm Reply

      You’re most welcome!
      Being aware, like you say, is key to understanding. I’m still learning after all this time, we all do with this condition.
      Thank you for your comment💙

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