Hydrocephalus: Brain injury is hard to deal with, comprehend and explain to others.

Hydrocephalus: Brain injury is hard to deal with, comprehend and explain to others.

Do you ever experience a sense of confusion, mixed with sadness, while talking about things you just can’t remember? I’m specifically talking about moments shared with family…or even close friends. 

Being close to family, after nearly 7 years, there are bound to be trips down memory lane.  I’ve become more and more aware, of the things I simply cannot remember, during these times.  It frustrates me to no end, leaving me feeling like the outsider looking in. But, I realized, a long time ago, that getting upset in the slightest way, will not serve a purpose.  I simply put on a smile or just plainly say, “I don’t remember…”.  However, that doesn’t mean it doesn’t affect me. Also, it doesn’t always mean that the people around me understand or accept my “excuse”.  In fact, there have been a few times where I’ve had to deal with the words “You remember what you want to…” or “All it takes is effort from you to remember and at least try but you don’t” or “But, you remember other stuff.  Why can’t you remember blah..?”. I’ve said it before, we don’t choose the memories we retain or forget

When I allow it, I find myself tearing up because it hits home.  Admittedly, these moments are few and far between.  More importantly, I know there is not a damn thing I can do about it.  I feel like I’m go-go-go all the time.  I literally don’t slow down nor do I give my brain a chance to just relax. (I do try though…).  Whether this is a good or bad thing, I just don’t know.  But there are benefits to both.  Not slowing down, means I don’t have time to wallow in self-pity nor do I get to ride the train of despair.   

But, some days… 

I would give anything to slow down, just a fraction, so I can catch my breath.  I just need long enough to actually enjoy what’s happening around or to me, long enough to make the memory etch itself in my brain. Long enough to relax my body, mind and soul. It’s probably one of the prime motivators leaving me feeling like I just want to walk away from it all… 

Writing these blogs helps in more ways than one and, serves as my literal downtime.  

I briefly touched on what a glimmer of hope was like in a long-lost memory.  I expressed my gratitude at not forgetting things like the birth of each of my children.  But there are things I really do wish I remembered and, it makes me wonder what else I’ve forgotten.  (You can’t miss something you never knew you had).  I suppose I’ve come to a point where it’s a case of, if I can’t fix it, then I’ll move on.  

There are times where I do wonder though…am I broken?  I feel that way some days…At the very least, if not broken, definitely a little bit cracked. Then I realize – Who isn’t?! This world is filled with people who all have their own load to bear, who have experienced far worse things and yet, they still find a way to carry on. I’m part of that tribe and am not afraid to say it.  

For the person living with it, brain injury is hard to deal with, comprehend and explain to others. 

A few years back, I was referred to a Neuropsychologist by a Neurologist, to check my memory issues.  It was a complete and utter waste of time, something which left me feeling like my complaints were unfounded.  She wrote my issues down to having moved countries, starting a new job and being tired, due to sleepless nights, with my then 2-year old.  “Hydrocephalus does not affect your memory…”, something I remember both of them saying.  This may be BUT, combined with brain surgery, it’s definitely clear as daylight to me. I’d like to say it’s gotten better but that would be a lie… 

I don’t like to wallow in self-pity but I also don’t believe that we should discredit what we personally experience, just because of someone else.  For myself, I feel as if I need to acknowledge what I’ve been through and the effects it’s had on me.  Not feeling sorry for myself but, validating the effects, to maintain some form of sanity.  Also, accepting that which I clearly cannot change.  I feel I can move forward better, once I do this.  If I agree with the 2 specialists I consulted with back then, I would be stuck in a rut trying to figure out why I can’t move forward.   

Trying to access a memory, which doesn’t exist anymore, is like having your feet glued on the spot while trying to walk.  Impossible to do, I’m sure you’ll agree. But what if you step outside of your shoes, leaving them behind and carry on walking? You can always buy new shoes and besides, they may come in handy for the next time. Trust me…there’ll be a next time! 

We all deal with situations differently; no person knows the right way to do this. Do what it takes to reach your level of comfort, find a coping mechanism, then carry on.  Personally, I have my moments of high, medium and low.  Memory issues definitely fall into each category depending on the situation.  It’s about finding the balance, assessing the situation and importance of it, that determines my reaction. 

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!

6 Comments

  • Karl Rothko

    July 2, 2019 at 9:52 am Reply

    I have not just one cause of brain injury, but 5 , all very serious , each causing major damage. My short term memory is stuffed, but long term is fine, but slowly degenerating as I get older. Trying to tell a story, and forgetting crucial details… loosing my train of thought.
    Or my brain will go on the blink altogether. Will switch off , and come back on again 5 secs later …. very embarrassing. Esp when your in the public eye. I have to do things very slowly in order to cope. One thing at a time, one day at time. Moment to moment, and slowly. Whatever gets done, gets done. The rest can wait. Rest is very important. Time out. I live a very slow life. Not much happens. When it does it’s good. Art, photography, work, E bikeing….

    • Skyewaters

      July 2, 2019 at 12:18 pm Reply

      I can relate to much of what you’ve said Karl. Remembering to take things slow is probably a good idea with these challenges. Good advice too. Thanks for sharing 💙

  • Pati David

    June 30, 2019 at 4:27 pm Reply

    I dont have BS but I started having memory issues for a year now. I do think is hydro related. I wanted to go to a neuropsicologist to try to gain my memory back. I wonder though if she is going to take me seriously. My last neurologist didnt really believed that I have a hard time remembering things. It sucks

    • Skyewaters

      June 30, 2019 at 9:35 pm Reply

      You may have a different experience to mine. Give it a try, you have nothing to lose. But, if it does go the way mine did, you are hopefully a bit more prepared for it.
      Good luck🙏🏼💙

  • pjm19606

    June 30, 2019 at 2:43 pm Reply

    That someone holds us accountable for our memory issues, especially short-term, is beyond the pale. I have not tolerated this for at least the last 20 years and others lack of understanding is no excuse. The fact that the medical community is complicit in this is even worse, they are protecting a major cash cow: shunt surgeries.

    • Skyewaters

      June 30, 2019 at 9:33 pm Reply

      Couldn’t agree more. It’s a sad state of affairs and I know I’m not the only one with these experiences.
      Thanks for your comment💙

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