Hydrocephalus: Invisible illness has a voice…

Hydrocephalus: Invisible illness has a voice…

Hope.

A word with so many different connotations, for different people, depending on their individual circumstances. Whether you’re the one diagnosed with Hydrocephalus or you know someone who is, it comes into play. And, since this is an incurable condition, your hope morphs as it ebbs and flows in an infinite loop!

These are just some of the things you hope for…:

  • That there won’t be a need for any more brain surgery after the last one you’ve just had.
  • That your treatment option will last as long as someone else you’ve come across in the support groups.
  • That the next doctor you encounter, will finally listen to you. They’ll be empathetic, think outside the box, be more human and ultimately be your saving grace.
  • That the indescribable pain will…Just…Go…Away! 
  • That the uncertainty and fear, which encompasses all that you’ve come to know, will cease to exist.
  • That your suffering will come to an end or at best, better treatment options will become available. 
  • That those closest to you could understand fully, what it is that this invisible villain inflicts on you.
  • That the emotional and psychological roller coaster ride will come to a complete stop!

But, ultimately, you hope that a cure will be found…in your lifetime.

The list of things you hope for is infinite…

I don’t have a crystal ball, there are no answers and there sure aren’t any guarantees. What I do know is, the longer I have this condition and the more I play this stupid game, I realise there is no way it ends with me winning. Most days it feels like a game because you play to the tune of the Hydro piper! You’re by no means in control…and you never will be. It’s all fine and well to say; “You determine the attitude you have, even if you can’t control anything else”. That works for like a second…Hell, even I have uttered these words and, truth be told, it’s been in a moment of conforming to the whims of the world outside.

For me personally, I’ve had to fight against the medical system. Even those closest to me, just to gain some sort of understanding, even empathy, that I’m not crazy or making any of this up. (Can I truly blame them, when my opponent is as invisible as seeing dead people..?) I’ve fought to be heard on so many levels and, quite frankly, I’m exhausted.

There’ll always be well-meaning people who cross your path. Ones who try to lift you up when you’re down, speaking words of comfort and inspiration. And, even though these people are at times a blessing and speak from a place of love, they can also add to the frustration. Simply put, their well-meaning efforts and attempt at showing support in a “positive way”, remains fruitless when the reality you face, contradicts what they try to convince you of.

Being hopeful, is not all that easy. It requires much energy and emotion. Also, depending on your frame of mind ultimately, the meaning of that hope is reserved only for you

Since my diagnosis in 2007, I’ve literally gone through the 7 stages of grief:

  • Shock and denial. This is a state of disbelief and numbed feelings.
  • Pain and guilt. …
  • Anger and bargaining. …
  • Depression. …
  • The upward turn. …
  • Reconstruction and working through. …
  • Acceptance and hope.

Something that simply does not escape me, is the state of depression and loneliness this condition fosters. The person I once knew, simply is no more. I have been in that dark abyss, so many times before, and continue to spiral from time to time. When you’re that low, your reason for hope changes. You realise that there are so many people who have this condition, so many who experience far worse than you and so many who are seemingly hopeful of something that simply seems impossible.

You just can’t see it…

As I accept the change from where my journey started, having gone through all of the stages above, to being broken down to the point where I am now. It’s a point where I am hopeful that death is my only true way out…a day that I look forward to, because I’ll be free from it all… AND, I”M OK WITH THAT! If anything, the thought brings me more peace than I’ve had in years. (The desperation of not having to be saddled with the heavy burden of Hydrocephalus and feeling inadequate (on all fronts) because of it. Besides, no-one’s getting out of here alive…FACT!).

Morbid? Maybe… Just remember what I said; “The meaning of that hope is reserved only for you”. It also depends on where you’re at on your journey. How much you’ve personally had to endure and the battle scars that will forever remain unseen. No two people with Hydrocephalus will experience it the same, we are all different despite having our condition in common.

What makes you hopeful? Regardless of what that may be, I’ll say it again; It is yours to own! I for one won’t be telling you you’re wrong, no matter what. 

September is Hydrocephalus awareness month. Over the next 30 days, I will share some information about the condition, most of which can be found on the Hydrocephalus Association website. However, my intention this year, is to give a voice to this invisible illness through those who have chosen to share what it’s like (for them), living with it. Let me know if you’d like to be heard too!

Listen, hear and understand what the Hydro community have to say…

Will you help spread awareness? Keep an eye out for my posts on: Facebook – @SkyewatersCD OR Twitter – @Skyewater33 OR Instagram – Skyewaters_life.

2 Comments

  • Shan Hart

    August 31, 2020 at 8:57 pm Reply

    I’d be happy to share my own experiences with hydrocephalus and how I’ve coped with it 🙂

    • Skyewaters

      September 1, 2020 at 9:23 am Reply

      You are most welcome to send me what you’d like to say! ?

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