Hydrocephalus: Some food for thought…

Hydrocephalus: Some food for thought…

I can be angry that life dealt me the Hydro card.  I can curse everything under, around or above the sun…but, it won’t make a difference.  29 years old and living a reasonably sheltered life (as far as this condition goes), that’s the reality I faced before I read the words “Mild Hydrocephalus” on a CT Scan result, the reason for the daily headaches I had experienced since the age of 16.  (A significant age, simply because that’s the first of two episodes when I had viral meningitis – the cause of my Hydrocephalus and the start of my journey).

The thing I realised a long time ago though, as much as we have freedom of choice, we don’t.  There are certain things we don’t get to decide…

Like when we live or when we die, we don’t get to decide how either, nor do we get to choose the path we will walk from beginning to end.  Most of it has been decided way before and without our consult.  The only freedom we have is the attitude we choose to face each of these life events.  This…I have come to accept.  Therefore, my Hydrocephalus diagnosis (as much as I’ve rebelled against it all), I accept.

You see the thing is, (in time) I changed my mindset, my way of thinking, my approach and most of all my attitude.  As I’ve gone each day, fostering new connections through technology, I’ve stepped into a new world.  Walked through a door, which I never knew existed before.

Most people say that you shouldn’t let this condition define you…I agree.  More importantly though, I think you should let it lead you to where it is that you need to be.  I have always been a firm believer that we are all born for a reason and have a purpose to fulfil.  It’s not glaringly obvious if you’re not looking but it’s there. For me, personally, it was literally receiving my diagnosis, leaving behind the country I love, with all my friends and family and, stepping way out of my comfort zone.

The loneliness of moving to a new country and being in unfamiliar territory, brought hidden feelings and fear to the surface.  Feelings and fear, I didn’t exactly know what to do with.  So, I decided to write.  I started my blog and found my voice.  It’s a voice that resonates with others around the world and quite honestly, this voice is the one thing that will have me uttering the words, “Thanks to Hydrocephalus, I’ve made connections with people across the world.  I’ve found my purpose in life and there is so much more I still need to do.  I am grateful for my diagnosis because without it, I would not be where I am today.

So before you misunderstand, I’m not grateful for the countless surgeries, unpredictable nature, pain, misery, fear, anxiety, obstacles or anything else which is negative, that goes hand-in-hand with this condition.  I’m not saying that I am happy to be living with a life threatening incurable condition.  I haven’t lost all my marbles just yet…

I am saying that I choose to make the most out of the situation, that I choose to highlight and speak out about a condition which affects so many others around the world.  I am saying that Hydrocephalus does in fact define the new life I have come to know.  I’m not fighting against it, I embrace it…warts and all.

Do I really have any other choice?

I physically am not in a position to heal myself and change my diagnosis, no one is.  But, I do get to choose my attitude which will, despite moments of weakness, be more positive than negative.

Finally, just because these are my views and attitude, does not mean that the next person living with Hydrocephalus has to agree and share my feelings.  We’re all fighting a battle in our daily lives and no person can tell you how to do that…You have to do what works for You.

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!

7 Comments

  • Andy Kiss

    January 16, 2019 at 8:32 pm Reply

    Well said sister Celeste *high five and hugs* :).

  • Megan Elizabeth Lifestyle

    December 17, 2018 at 2:49 pm Reply

    I’ve just come across your blog and I think it’s fantastic! I have hydrocephalus too. Mine is obstructive hydrocephalus, otherwise known as aqueduct stenosis. I have always been lucky in that so far mine is asymptomatic but I always get annoyed when people don’t understand the mental health repercussions the condition causes. I suffer from anxiety due to the condition. Finding blogs like yours is really reassuring and it’s great to find someone else raising awareness. X

    Megan | https://meganelizabethlifestyle.com/

    • Skyewaters

      December 17, 2018 at 6:21 pm Reply

      Thank you Megan! And, thanks for sharing. My Hydro, like you, is also caused by Aqueductal Stenosis.
      I agree that people don’t always understand and most times, our challenges aren’t only with the condition. Knowing there are others helps though and connecting is key. 💙

  • Rick Fry

    December 11, 2018 at 9:08 pm Reply

    Thanks for sharing Skye! Yes, we all have a totally different story, and yes, it’s difficult, and at times a P.I.T.A., well actually the head, but, we have to choose not to let it run or lives!!

    • Skyewaters

      December 12, 2018 at 4:12 am Reply

      Thanks and you’re welcome Richard, for sure💙

    • Andy Kiss

      January 16, 2019 at 8:33 pm Reply

      well said Rick Fry I totally agree with you :).

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