There’s so much more going on beneath the surface than you realise!

An iceberg seems appropriate for this post and, the sinking of the Titanic, is a perfect example of not realising the full extent of what lurks beneath the surface, hence the image I chose to use. IMHO!

The unseen can sometimes cause more damage than what’s apparent to the naked eye, especially when it goes unnoticed OR gets ignored…

I wonder if the people on the Titanic had known what lay beneath the surface, what difference it would have made…Undoubtedly, they would not have embarked on that journey.

To look at (me) you’d probably think (I) was all the things listed at the top of this image. Some are true but some are only your perceived interpretation of what you “think” is true of me. Everyone has traits that are both good or bad, negative or positive, true to their nature and just simply, a misconception by others. Maybe you’d have some preconceived idea of (me) based on what you see on the day; there are times where it couldn’t be further from the truth! Not when you compare it to the bottom half of this image or, in my case, combine it all, the words that do reflect who I truly am or what I feel…However, by the same token, some of what lurks beneath the surface is negative fluff and has no ounce of truth either.

With this condition, and post brain surgery, there’s so much emotions, so many challenges and so many obstacles to overcome. To say I haven’t always been this way would be spot on – 💯%

To be truly seen, is to be openly vulnerable, regardless of what others might think of you.

C. A. Marriday

Telling me (I’m) strong and brave does not make (me) feel any less of what lurks beneath the surface. Nor does saying; “You’ve got this” when, in the moment, (I) simply want to scream; “(I) can’t do this anymore..!

The damage caused by this condition before, during and after, is something that can’t be undone. Brain surgery causes injury and irreversible damage. It’s not simply a matter of having brain surgery i.e.; “going to get fixed” and then you’re all better. The effects are real, challenging and different every time.

An injury that can leave you feeling like a failure because you try to be positive, have faith and see the silver lining BUT, it doesn’t always work out that way. Feeling like death would certainly be a better alternative as you dip in and out of depression…and face the next challenge. Yet, not having the “courage” to actually kill yourself…because somehow, something or someone else keeps you from going through with it..!

If someone you know has this condition and is showing any of these signs, don’t ignore, minimise or downplay it. My advice is this:

Be aware of, and acknowledge, what lurks beneath the surface and recognise it for what it is. From there, work towards a better space with empathy, patience, kindness and understanding. (This may not come easily or naturally to everyone! In fact, if you’re not naturally inclined, I guarantee IT WON’T)

So many people are ignorant to what lies beneath the surface, simply because they can’t see it. They’re not experiencing any of it themselves. Therefore, understandably, they can’t relate. BUT, that’s not an excuse, especially if you’re reading this post. Educate yourself and help spread awareness! Share this post! You never know who could be facing these challenges and simply need validation. There are many conditions or life situations that can leave one feeling like this.

Support shown to someone affected in this way, is nurtured through; knowledge, patience, kindness, compassion and/or understanding. As much as you have to get used to the changes before you, so too does the person affected by it, within. They are literally living in an inner solitary confinement of a torture chamber. Stuck with NO way out…

Educate yourself. Be aware of the effects. Because, knowledge truly is power!

If you’re not up to it, or feel like it’s too hard, the least you can do is say so and move on…This condition is NOT for the faint hearted!

It’s hard enough to deal with the reality of the condition, than dealing with the stress of someone else having to carry the weight of it all, against their will. You have a choice. I don’t!

Next time, if you look at me, know that all of this is going on inside of me, at any given moment. I’m not faking! I’m not being a drama Queen. I’m simply surviving. Plain and simple!

9 Comments

  • Richard

    February 2, 2023 at 7:15 pm Reply

    After a revision in ’93, I returned to work, but after intermittent attendance and multiple days of leave finally went out on disability two years later!
    We wentvto visit my in-laws, and I was asked to go w/my father-in-law to their boat and trailer! I was asked to bring materials up and down a ladder multiple times! When we returned, he announced to the family “he’s not disabled”! To this day my sister and brother-in-law treat me with disrespect! I stopped going to holiday meals with her family!
    Even my own family gets loud when watching a sporting event, yelling and screaming at the T.V. screen, even the kids are starting to yell at it! Grant it, my nephew has a hearing deficit, and talks loud anyway, but they will use it as an excuse say, well U.D.’s yelling! 🙄
    I just stay home anymore!
    They all say I’m in a mood or antisocial, but the family, especially the ones who lived in an adjacent apartment w/us for a few years, while I had a revision just before they moved in, or while I had a revision know about my difficulties!

    • Skyewaters

      February 3, 2023 at 4:18 am Reply

      Firstly, I want to validate what you have said and can fully relate. It’s not ok the way they’ve treated you or what your father-in-law did.
      Personally, I’m struggling with all of this myself and hope to write a blog post about my own experience. If, and when, my brain will allow…
      Hang in there💙

  • Renee Truex

    January 2, 2023 at 5:00 pm Reply

    I have been craving my whole life to put into words what I’m going through and you have really nailed it. THANK YOU!

    It’s taken me most of my 53 years but I have finally identified the people in my “circle” who I need to let go of and the ones that I can really count on for all the love and support I need. When I did this it made life so much better for me.

    • Skyewaters

      January 2, 2023 at 11:04 pm Reply

      I understand that, as I’m reaching that stage too. If anyone makes my journey more difficult, than it already is, they don’t deserve to be part of it.
      Thank you for sharing 💙

  • Philippa Taylor

    January 2, 2023 at 1:36 pm Reply

    I can relate to this so much! It’s so difficult trying to work out how I feel, how to express it to others and how to not mentally bully myself for the effects of this condition. I was in tears the other day thinking of all the things I could be doing if I didn’t have hydrocephalus. Thank you for sharing this! Best wishes to you for 2023! 💜💜

    • Skyewaters

      January 2, 2023 at 11:02 pm Reply

      As I can relate to what you have said. I’m guilty of “mentally bullying” myself too! Let’s see how we can get through this, together.

      • Philippa Taylor

        January 4, 2023 at 9:50 pm Reply

        Sorry, I’ve come down with a horrid cold in the last couple of days and completely forgot to reply! Definitely working together on this would be great. 👍🏻

        • Skyewaters

          January 4, 2023 at 10:04 pm Reply

          No need to apologise. I sincerely hope you feel better soon🙏🏼

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