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.