Phoenix rising

Phoenix rising

It’s been a while since I’ve posted anything on my website. I’ve slowed down to a crawl BUT, as long as I have words left in me, I’ll continue to speak out about the effects of Hydrocephalus and Brain injury.

To bring you up to speed in a nutshell; the bleed during this surgery left me with a brain injury. It has left me cognitively impaired.

Like a phoenix rising from the ashes, so too will I..!

It feels like the life I’ve known, has literally been set alight. I found myself at a point where I needed to decide if I would stay in that fire, and get burnt to a crisp. Or, if I would use what’s happening and propel myself forward, and rise to the occasion. A different direction maybe…(exactly what that is, I’m yet to figure out).

It seemed easier to stay in the furnace of my life at the time. And, to be honest, there are times where I wish I had succumbed. I will not lie to appease anyone else. Living with an incurable condition (hydrocephalus) and an invisible disability (brain injury), with little to no support, makes for a challenging time.

The battle is not only to get those on the outside to understand, because you look “normal” to them.

  • It’s reaching a stage of acceptance of the person you no longer are, on the inside, with no visible change on the outside.
  • It’s the internal fight against the changes, over which you have NO control. It’s hard to accept this.
  • It’s longing for the (perceived) “shitty” life you used to know. You truly never know what you’ve lost until it’s gone.
  • It’s fighting SO hard to stay alive (literally), as dark thoughts cover you from head to toe, and feeling overwhelmed is the most confronting emotion of all.
  • It’s willing your self to do the cognitive things you easily done before. Learning to adapt along the way purely for survival.
  • Beating yourself up because you no longer can. Then realising, you are the only one in your corner and you deserve that allegiance, more now than ever before.
  • Not fully understanding or appreciating the effect of these major life events. Because, let’s face it, it’s all uncharted territory for you too!
  • More over, it’s dealing with a society who simply doesn’t understand the ramifications of the injuries you’ve sustained. Enduring their hurtful reaction and ignorance.

Like a dung beetle, shoveling shit uphill, during a storm!

And, keeping the love alive for a family who (sadly) form part of all those outside forces too, knowing fully that they don’t understand. How could they possibly? Acknowledging the challenges that exist on both ends of this equation.

The one person you can’t escape in a situation like this, is yourself – literally!

You’re left questioning so much and feel the tug of war at your heart strings. Should you stay or should you go. If only to preserve the little bit of dignity you have left. Because, you would rather not be a burden. You would rather have only yourself to consider, with all your new imperfections. Not having to explain or justify your words or actions. Not wanting to apologise every time you do or say something out of character or offensive to the next person. Torn between your love for them and the preservation of self…

Some things may be worth fighting for…time will tell…

So, you make the conscious choice, to rise above it all. As best as you possibly can!

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!

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