Sometimes all you need is 1 person

Sometimes all you need is 1 person

Having Hydrocephalus has certainly taught me some valuable life lessons.  Some…more obvious than others.

The last few weeks have felt like an unnervingly familiar road which I walked a few years back.  History repeating itself, with doctors who outright refuse to help me BUT there’s 1 (FINALLY! – it only took 5 years) who will go where others (seemingly) “fear” to.  I haven’t met this man face to face, nor have I spoken to him aside from an email to which he responded within the same day.

This condition is not easy by any stretch of the imagination.  One of the hardest things you have to do, amongst others, is probably to make the call about when to seek medical help.  It’s not always obvious that your Shunt or ETV is malfunctioning/failing.  There isn’t always a norm simply because it’s unpredictable and failures CAN and DO happen outside the norm.  (Something some doctors fail to recognise).  It’s a time where you can be made to look like a lunatic, be labelled “depressed” and quite simply brushed aside because no one around you is prepared to listen.  It’s a slippery slope where you quite easily could start doubting yourself to the point of no return (a place you need to pick yourself up from and forcefully carry on).

This is probably one of the reasons why I said you’ll have to work harder, Lord knows I’ve had to over the last few years.

But…All it takes is 1 person:

  • 1 person who asks how you’re feeling and checks in on you while the rest of the world seems oblivious.
  • 1 person who will listen.
  • 1 person who will be willing to give your symptoms the benefit of the doubt and take you seriously.
  • 1 person who will act in your best interest.
  • 1 person who will be prepared to do what others, in the same profession as them, would not.
  • 1 person who will give you a bit of hope in a hopeless situation.
  • 1 person who shows a bit of empathy and enough care to make you feel like a human, someone who matters.
  • 1 person who, with a few simple words, throws you a lifeline (unbeknownst to them).

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This man probably has no idea just how grateful I am to him at this very early stage of our journey.  It may be that all he does is the ICP Monitoring and that spells the end of the road for us, it really doesn’t matter.  He’s taking what I’ve been complaining about, what’s been troubling me for so long, seriously enough and, he’s doing something about it…which is leagues apart from anyone else.

Some people have suggested that these situations arise because the surgeon involved is seeing $ signs and, may be planning their next holiday.  This is a possibility, I can’t deny that BUT when you reach the stage which I have, it really doesn’t matter.  I’m prepared to give it the benefit of the doubt and believe that the intentions are admirable, accepting help regardless of the driving force behind it.

I cannot imagine any person willingly asking for brain surgery.  I for one, have been pushed to a point where I feel like I have no other choice.  It’s “simpleDon’t have surgery and chance something actually being wrong which ultimately means brain damage or death.

OR

Agree to surgery, and get some form of peace of mind.  (Knowing fully that it means another surgery to redo my ETV).

Can you really blame me, (or anyone at this point in their Hydro journey) for taking the risk, especially when he puts it like this?:

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*Hemisensory symptoms: I’ve been having a numbing feeling, from time to time, down the right side of my body, from head to toe.  Whether it’s related or not, who knows.  It has me concerned but…one thing at a time.

How easy or hard has it been for you to find that 1 person who will listen and, act on it?

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!

8 Comments

  • Bronwyn Daniels

    August 17, 2018 at 4:10 am Reply

    Great article, keep up the good fight as well as highlighting the journey and touching so many lives along the way

    • Skyewaters

      August 17, 2018 at 5:01 am Reply

      Thanks Bron😘

  • Tammy

    August 16, 2018 at 1:35 pm Reply

    You go girl!! Proud of you for continuing the fight! I am at the “no point just suffer and thrive as best as possible” stage again with my ETV.

    • Skyewaters

      August 16, 2018 at 8:09 pm Reply

      Thank you!
      We definitely do a rollercoaster ride of up and down with this condition. All I can say to you is, trust your gut and when the time comes, keep fighting for yourself to be heard. Don’t linger at that stage too long.

  • Michelle

    August 16, 2018 at 12:56 pm Reply

    Hi, I’ve been suffering with headaches for a while now. Got a VP Shunt fitted but feel like there’s something not quite right. Go to the doctors and guess what i’m depressed and have sent me for an appointment with the mental health team, but that’s not until Jan 2019. I do admit my mood isn’t very good with tears and feeling down and can’t be bothered, but i’m putting that down to my doctors not listening, after all its my head and it don’t feel right. I just want out of the constant headaches. Here I go again feeling like i’m going nuts, the more I try to explain the more upset I seem to get. I think its because I can’t get anyone to listen, and its getting me to the point where you don’t want to wake up because you know what the days going to bring more pain just want it all to stop.

    • Skyewaters

      August 16, 2018 at 8:07 pm Reply

      Michelle, if it’s any consolation…I know EXACTLY what you’re talking about! Anyone who doesn’t get the care and treatment they need would end up in that downward spiral. Believe me, up until a few days ago, that was literally me – wanting to give up the fight because it’s “just no use”. They can tell me I’m depressed all they like but I know I’m not.
      You have to fight though, don’t give up as much as it drains your energy and affects everything else that is you. Keep on finding a way to get to that one person who WILL listen and DO something for you. Keeping you in my prayers…

  • Karen DeBonis

    August 16, 2018 at 10:56 am Reply

    With my son, finding that 1 person took three years. They found a brain tumor. Twenty one years later, when my sister’s brain tumor was discovered, after 5 years of suffering, what she said about her imminent brain surgery- “I’m psyched.” I hope you get answers, finally.

    • Skyewaters

      August 16, 2018 at 8:03 pm Reply

      I can definitely relate to your sister saying that. I guess “I’m psyched” as can be at this point too.
      Thanks, I hope the procedure sheds some much needed light.

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