Hydrocephalus: “Oh, trust me…Everyones memory is bad from time to time”

Hydrocephalus: “Oh, trust me…Everyones memory is bad from time to time”

As many people with Hydrocephalus will know, there are a few little words that when uttered, evokes an “ill” feeling.

When you try and dumb down Hydrocephalus for someone else who doesn’t have the condition or know about it, somewhere along the conversation, you will hear the words “Oh, I also get terrible migraines“. Anyone with Hydrocephalus knows that there is a very clear difference between a “normal” person’s headaches and the ones we experience because of the condition.

Similarly, I struggle with my memory and I know this is because of the procedures I’ve had done and the condition itself. However, the number of times I’ve heard someone say “Oh, trust me…Everyone’s memory is bad from time to time” or “My memory isn’t that good either so don’t worry, you’re not alone“. The number of people who utter those or similar words is escalating. Some, I know, mean well but I wish they rather wouldn’t.

I feel like I want to scream at them sometimes…yet, I know it won’t get me anywhere. I’m not dismissing the fact that other people forget things but…and this is a very big BUT, I don’t feel like they can compare their situation to mine. My brain literally feels like the Bermuda Triangle. There are things that go in and are never seen or heard about again. It’s scary and real as night and day, not to mention frustrating as hell.

Admittedly, with conditioning, training and repetition, I manage to complete my daily tasks. I am not an invalid, I am not that bad off but, there’s no way that I can say my memory issues are in the same league as the next person who does not have a Brain injury or condition.

So where does it leave me?

Honestly speaking, I can get upset with people who do this or…I can just accept that they don’t have any idea what they’re talking about. Also, there is no way for them to know just how badly each person’s memory is affected. We are all different, no two people are the same…not even people who have Hydrocephalus. We’re all wired differently and accepting that some will have difficulties post-op is just the start. Acknowledge to yourself that there are a few struggles, changes or adjustments you’ve had/will have to make and do the best you can do for YOU.

I sometimes think that having Hydrocephalus (and living life in general), is about doing the best you can to survive. No-one said life is easy and by God, I’ve been through enough in my 39 years on earth to know that it is NOT! I also feel that enough is enough and when it comes to dealing with this condition and its effects on me, I just don’t have any energy left to explain myself.

So, note to self…let others be who think they can compare any of your symptoms to their “normal” one-off episodes. They just have NO idea…and getting upset is not worth the effort or wasted time.

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!

10 Comments

  • Denise Santillan

    October 18, 2017 at 4:00 pm Reply

    I have always had bad memory issues ever since I was little. Being in and out of the hospital every 5 years since birth (I’m 27), has taken its toll on me. I’m really the only one who notices because while people call me stupid from time to time and even go out of their way to say “you have to try to remember things!” The brain, after going through so much trauma, cannot easily repair memory loss.

    Even recently while everyone who is aware of my memory problems due to Hydrocephalus… Life goes on and people expect me to remember certain things but we cannot help it if we forget. So they get frustrated and call me/us stupid.

    Memory loss has lead me to depression that I have been trying to deal with ever since I could remember. I cannot remember when that was..

    • Skyewaters

      October 19, 2017 at 7:42 am Reply

      Firstly, let me just say, you are not stupid. I know you probably already know this. But, just affirming that the words people use can be very hurtful.

      It certainly isn’t easy dealing with brain trauma and having repeated surgery can cause all sorts of issues. Unless you’ve been through something personally, you will never understand what the next person is going through.

      I wish you well in dealing with the depression and pray you see the sun shine again.

      Stay strong

  • TAMMY

    September 21, 2017 at 3:26 am Reply

    Just want to say how excited I was to read we are around the same age. Lol Silly I know but having someone explain so well how I feel and what we go through AND having you in my age group?? We have never met but I suddenly feel less alone.
    Thanks for your blog ✌

    • Skyewaters

      September 21, 2017 at 3:53 am Reply

      Hi Tammy. Glad you feel less alone?. That’s one of the reasons behind my blog.
      Ps. You’re welcome ?

  • Tonya Garrell

    September 7, 2017 at 11:17 pm Reply

    I , too, have issues with my memory. On top of hydrocephalus, I had a stroke during surgery when I was 19 which didn’t help at all. I am very lucky to have co-workers who are accepting of my memory and although, it is probably frustrating to them, they are awesome! I have just learned to use a note, my hand or whatever I have at the time, to make my notes. Lol

    • Skyewaters

      September 8, 2017 at 3:31 am Reply

      Finding what works (for you) is key. It’s a constant work in progress and I think taking it easy on yourself, based on what caused the issue in the first place, is probably not a bad thing either.
      Thanks for commenting?

  • Michelle Tetley

    November 13, 2016 at 1:10 am Reply

    Firstly Skye – thank-you for your website. You are right. It is great to know we are not alone.

    I have always had a bad memory, too.
    After being diagnosed, as an adult, with hydrocephalus – it has gone along way to explain my memory problems. It is still hard for others to understand. Being like this leaves me feeling somewhat disconnected, not being able to track conversations or remember what people have said. Much of the time, it feels like I have to almost ‘translate’ the things people say to me – from English to English. I know that sounds weird but, that is the best way I have found to explain it.

    I have noticed that it is very easy to go from feeling fine to feeling really down – even though nothing has changed. I have made myself very conscious of how I am thinking. For me, being my own best friend and talking positively and encouragingly to myself, is vital. Others cannot understand what is going on for me. I find it hard to understand and even harder to explain to others. For some people, giving them information about hydrocephalus helps them to understand. Not everyone is receptive to this but, I can’t be responsible for their response.

    I have recently decided to make sure I do something for myself every day – things that I enjoy doing – just for fun…..listening to music, going for a walk, looking through photos.
    I still have the same challenges but, I have some positive things to keep me smiling.

    I am so grateful to the surgeons who saved my life. I look at all the things I have and the things I can do – there are so many challenges but, I try to make sure I recognise my achievements and my good qualities. I hope that others can do the same, regardless of what anyone else thinks.

    • Skyewaters

      November 13, 2016 at 3:27 am Reply

      You are most welcome Michelle 🙂
      I fully understand what you’ve said about your memory issues too. It sure is a rollercoaster ride of emotions and one that, if you are not prepared for it, can leave you feeling down and out.
      I love your decision to do something for yourself, too many of us forget to do this (I for one am guilty of that).

      Thanks for commenting

  • Darryl Wilson

    September 7, 2016 at 12:37 pm Reply

    Ive always had a bad memory. People do not understand. My current employer is aware of this but still i find myself being chastised for being too slow at my work. I have tried implementing procedures to help me but im finding comprehending ppl’s words is also letting me down.
    My last shunt btw was put in, in 2011 and now i have permanent tinnitus coupled with depression

    • Skyewaters

      September 7, 2016 at 10:09 pm Reply

      Hi Darryl
      It doesn’t make things any easier to have that kind of pressure. I can fully understand how you must be feeling. There was a time when nothing would go in even worse than I have it now but I soon realised this was because I was silently stressing and putting pressure on myself because I thought I wasn’t good enough. People would talk to me and I would lose them on the 2nd/3rd word!
      I pray your situation improves and that you can find coping mechanisms to get through each day.

      Thanks for commenting.

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