Hydrocephalus: What does perspective look like to you?

Hydrocephalus: What does perspective look like to you?

Have you ever found yourself in a situation where you make a big deal of things and, after some time has passed, realise that it wasn’t as bad as you thought? I’ve certainly had my fair share of these moments and still do! Life hands us all lemons along the way, I have no doubt of this.  Most times you hear people say, “Change your attitude” towards a situation (be more positive), to move past whatever is dragging you down.  This might work with certain things but doesn’t apply to everything. 

For the record, I feel we need to be able to express how we feel, allow emotions to breathe and then move on from it. Suppressing negative feelings never does anyone any good. Take it from someone who has carried her fair share of this debilitating weight and…I still do…some things just never leave you!

Undoubtedly, perspective for me, is something which probably looks totally different to the next person – or maybe not.

All I know is, when you have an incurable condition, there’s just a different way you view life.

For example:

Family feuds – They just seem so dumb and incomparable. Regardless of what the issue is, it just fails in comparison. We live with regret when someone dies and question our actions in certain situations but, by the time it gets to that point, it’s always too late. We make each other’s lives a living hell and for what? Dumb, right?

Work – Realise that work is a means to an end – it pays the bills and keeps food on the table at the very least. It’s not to say you don’t take it seriously or put every effort into it but somehow, what appears of importance to those around you also, fails in comparison. I could easily face a looming deadline now, something which may have scared me a bit a few years ago (pre-diagnosis), not so much now. I’ve had quite a few moments of asking myself “What the heck are you doing this for?”. Moments where I feel I should be out saving the world…Somehow, doing something with a deeper meaning seems more in line with my hearts true desires. But, alas…I have bills to pay and a family to take care of!

Friendships/relationships – You learn to accept that people come into your life for a reason, a season or a lifetime. You mourn the loss of some and rejoice in the ties that bind. You take different paths and somehow, you discover a deeper sense of self as you get older. Maybe this is our ultimate purpose…?

There are so many examples I could list but I don’t want to bore you…

Perspective for me now means…Knowing as much about this condition as I possibly can and owning it because no one else will. Being an advocate and knowing when to “take my symptoms seriously” enough to seek medical attention. Right now, I’m awaiting my upcoming consultation with a Neurosurgeon next week, not knowing if the symptoms I’ve been feeling is an indication of “something more” or not. Accepting that the possibility of my next brain surgery, is something which could happen tomorrow, next week, next year or within the next decade. It’s living with the reality of the condition and not sugar coating it.

It certainly makes everything else seem so small and insignificant

I know for a fact that it’s not at the forefront of anyone else’s mind around me but, it sure as heck is for me. Others are oblivious…they carry on with life, consumed by some of the things I’ve mentioned above and more. They live their “sheltered” lives and I stare back at them wondering…

I understand that some situations can make you feel helpless to the core especially when you see no way out. But that doesn’t mean there is no way out; it just means you haven’t found it…yet.

Silently I observe all around me because perspective through my eyes, teaches me that whatever plagues them today, will fade away in time. But what plagues me today (living with Hydrocephalus and the uncertainty of more brain surgery, including surviving it) will be with me till my time on earth is done.

Yet, they will never know…



    October 29, 2019 at 2:33 pm Reply

    Thank you for your comments Skye. I can certainly identify with some of them. Unlike quite a few others who also suffer with this condition, I am lucky to some degree. I have not had dozens of surgeries, Just three. Just three! It sounds like I should win a prize or something! However, that is far from the truth. After my third surgery when my shunt was occluded, my neurosurgeon informed me that he will not perform any more surgeries without a second opinion due to the fact that after my shunt placement #1, after the fluid drained, my brain started to bleed. I have since been made aware of the fact that I have probably been suffering from Hydrocephalus since birth and yet it was not until age 33, that symptoms really started to show. I served 8 1/2 years. Condition not apparent. A number of jobs. Condition not apparent. In short, just because a person does not use a cane or is reliant on a wheelchair, it is impossible to know that they are carrying around this condition. It lives a quiet, solitary life for everyone else…but you. It’s voice sometimes quiet, sometimes so loud it is deafening, but regardless, it is ever present. It can be debilitating. Restricting movement, activity or so far as to even restrict life. Under normal circumstances, some might fall into a deep depression, curled up in a ball sitting in a corner and if you are dealing with this, it is not hard to understand why. Some on the other hand, cling to the hope that one day, hopefully not too far away, there is a breakthrough, no matter how small, that leads to a positive increase to the quality of life. We can all hope right? We all need something to hold on to!

    • Skyewaters

      October 29, 2019 at 8:26 pm Reply

      You have summed it up perfectly Ian! We all have our individual stories but can somehow relate, no matter how small the scale.
      And, hope is all we have even if it’s just to stay sane?

  • Bethany Bacon

    October 25, 2019 at 4:58 pm Reply

    Thank you again for saying exactly what I have wanted to say, yet didn’t know how. For me, this life on earth is a little speck compared to eternity. Even though I go through hardship physically here, one day in Heaven, all of this will be past. As a Christian, I have a glorious hope!

    • Skyewaters

      October 25, 2019 at 8:11 pm Reply

      You are most welcome! I too share that viewpoint ?

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