Hydrocephalus: The memories we retain (or forget) aren’t by choice…

Hydrocephalus: The memories we retain (or forget) aren’t by choice…

With memory issues being a challenge on any given day, a side effect of Hydrocephalus and the subsequent brain surgeries, it’s a pity we don’t get to choose which ones we retain or forget.  (Don’t get me wrong, ageing definitely plays a part in it too but remember, this condition affects people of different ages.  However, the reason/cause is not the same as that kind of forgetfulness, especially for someone who hasn’t quite reached senior citizen status).

People often tell me “Oh my memory’s just as bad” and, even though I’m sure for them it may seem that way, I don’t feel they truly understand what I’m talking about when I refer to my own memory challenges.  There’s a difference between someone who has had brain surgery, TBI (Traumatic Brain Injury) and someone who has a normal healthy untouched brain.  I often think about the many arguments my husband and I’ve had over these past few years since I was diagnosed.  The sheer helplessness I felt each time I got something wrong, forgot to do something or anything which required me to make a withdrawal from my memory bank.  The “Insufficient funds” message received loud and clear, staring me down…

As an example, I’ve lost so many house keys, a longstanding “joke” between my husband and I (this wasn’t always the case).  I’ve forgotten things within a nanosecond of it entering my brain and felt paralysed because of it.  I’ve literally felt like an idiot because I’ve forgotten how to do simple tasks I could easily do before, without thinking.  (This mostly being the case in stressful situations or for some time after surgery – thankfully, it got better with time).  I could go on and on…

Then, there are those memories, engraved in my mind’s eye.  The sights, sounds, smells and even feelings that go along with them…etched in the crevices of my memory bank – refusing to leave me.  Some I’m eternally grateful for, like the birth of each of my children.  But some, well let’s just say, if I were given a choice of which should stay or go, I’d fling them into a dark abyss never to be seen again.  But, sadly it doesn’t work that way.

I’ve come to accept it as part of the package, a side effect that I need to take in my stride.  Reminding myself that I’m not responsible for it, nor am I the cause of it and, I sure don’t have control over it.  I might not like it but that doesn’t mean I let it bring me down low enough for me to not get back up.  (Like the house keys I lost.  What’s the use of stressing or feeling bad about them at this point in time?  We live in a different country altogether now and don’t even own the house we used to live in).

It’s like anything in life…you take the good with the bad and the rest – well, I ask myself, “Will it really matter once I’m gone?

If the answer is “No”, then there’s just no point in getting myself all wound up and anxious about it…I move on.

Some memories are fragmented or distorted in places.  Yet, I remain grateful for some of them.  One such memory is the sound of my unborn foetus’ heartbeat while I lay in ICU.  Waking up confused, slipping in and out of a coma after 3 brain operations over 3 days.  I reckon, even though I can’t remember anything from the night before, that week or conversations I apparently had with visitors, it’s not a bad memory to have retained.

I treasure the memories I do have and don’t focus too much on the ones I’d rather forget.  If anything, I try to forge new ones and focus my energy on getting them to stick instead.  Keyword being “try“…

The next time you feel bad about your memory issues or get into a tiff with someone you love, who doesn’t understand your challenge…ask yourself the question above.  Don’t be hard on yourself but more importantly, don’t give someone else the power over you, not when you’re already facing an immense challenge.

Just let it go and move on…


  • Andy K.

    November 8, 2018 at 8:52 pm Reply

    your right on target :). I can relate on most of what you said about you in this blog. I think we should become friends and talk on the phone and by texting. Please private message me on Facebook your cell number. I will private message you my cell number :).

  • Molly Lavilla

    October 23, 2018 at 4:04 am Reply

    You are on target. There are many memories since I’ve gotten my second VP shunt that I wish I could forget. Funny, before my surgeries I never recalled these but since it has awakened my past. I only wish I could forget these. I too have issues with short term memories.I also have recurring dreams. Is this my issue or is this common to have recurring dreams? I have the same dream or variation of the dream at least 2-3 times a week.

    • Skyewaters

      October 23, 2018 at 7:47 pm Reply

      Hi Molly
      I can’t say if it’s common or not. I personally don’t recall having them. Waking up in the middle of the night, usually around 3am and not falling asleep again for 2 to 3 hours after however, is not uncommon for me.
      I’m not an interpreter or anything like that but there may be a reason why you keep having them.
      All the best?

    • Deena

      October 26, 2018 at 7:44 am Reply

      You are so right. I’m 53 and I was just diagnosed this year. I also have a VP shunt. And yes, I still forget things. This is frustrating for me but other people just dismiss it as an age thing. Oh well, it could be both I suppose.

      • Skyewaters

        October 26, 2018 at 7:57 am Reply

        Firstly, welcome to the Hydro family Deena?
        I always say, other people’s ignorance is their bliss…not much we can do about it. Always remember, you are not alone?

  • Philip Mastromonico

    October 22, 2018 at 4:38 pm Reply

    Oh, Skye, you’ve written volumes. Imagine what it’s like for us 1st generation hydrocephalics. I can’t remember why I’ve entered a room many times and yet have vivid (and accurate) memories from when I was 8.

    • Skyewaters

      October 22, 2018 at 7:45 pm Reply

      I hate it when that happens too. Frustrating to say the least.

  • Ron Kelleher (Hydropioneer)

    October 22, 2018 at 1:41 pm Reply

    Shuntastic piece of prose Skye. I can recall sitting at the dinner table my head booming having to think out picking up utensils, reaching for my glass which usually ends up spilling. Every step has to be thought out so I know exactly what you talking about 100% -Ron Kelleher(Hydropioneer)

    • Skyewaters

      October 22, 2018 at 7:44 pm Reply

      Thanks Ron. ?

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