Hydrocephalus: Resilience grows on you…

Hydrocephalus: Resilience grows on you…

I seem to learn more about myself and this condition every time…

A week ago, I was in unimaginable pain and for the first time, I made the decision NOT to seek medical help. Thankfully my headache has gone since then, that in itself is a huge relief. I’m not back to my normal self just yet with lingering daily nausea, dizziness and a waning (down by 3kg) appetite, which has been a bit more ravenous over the last couple of months, yet this too is improving. I remember a time where I used to seek medical help so much, I probably fit into the same category as a paranoid drug-seeker. In my defence though, it wasn’t always through my own doing but more at the insistence of others that I do so. Not to mention the fear factor of living with the unknowns of this condition.

Some might say I made the wrong decision by not going to the Hospital’s Emergency Department or that I was playing Russian roulette or being risky and, they might be right. However, I think uttering the words today to a colleague made me see more sense in what my decision actually meant (for me).

If anything, the doctors I’ve dealt with over the last few years who have all ignored my symptoms, have been more of a threat to my health than I was to myself last week.

I do feel like I’ve been ignored, brushed aside and possibly not received “proper” medical care over the last few years. I could go blaming everything and everyone under the sun but that won’t get me anywhere. It certainly won’t change anything nor will it fix what’s possibly going on inside my head. This is just the Hydro rollercoaster ride I seem to embark on (against my will) every couple of months, and somehow, I make it through to the other side. I am at a point now where I know, with 100% certainty, that there will be a next time. I will be symptomatic again…

I took a moment to pause and think about it all, over the last couple of days. Sure, it’s not easy, I will never tell anyone that it is. If you have been diagnosed with this condition or have someone in your life who has been, there’s no way I’m going to tell you that it’s going to be a smooth ride. To do so, would be to disregard every moment of discomfort, pain (some more torturous than others), uncertainty and fear I’ve had over the last 13 years. I’m also not trying to scare you, just stating a fact!

I’m not an attention-seeker by nature but, I’ll admit, I do feel good when others show genuine care and interest in me and my well-being. (I might shy away from it but that’s because I hate the spotlight). Just like with Hydrocephalus, I’ve had to make peace with this not always being the case with most people, especially those closest to me. However, a close friend helped put this into perspective (something she’s said to me a few times before but this time, I think I actually heard her).

Sometimes people around us say things that make us wonder if they actually care, if they are safe to share our vulnerabilities with and if they are truly there for us when we need them most. It’s hard enough to make a call about whether to go to the Emergency room, anticipate inaction and be sent home feeling deflated. On top of that, having to deal with someone who tells you, “Why bother? It’s just going to end up being the same as last time”.

I have to ask; What other choice do you truly have, as a person living with Hydrocephalus…?

Some find it easier to say “stupid” even “ignorant” things (which may be hurtful to us yet unintentional once uttered) “because they’re not the one having to live with this condition”. I still struggle with this though because in my “perfect view of the world“, everyone possesses empathetic abilities!

Really getting this message is what has sparked a new flame inside my soul. Whether this will be a flame that will be soothing, enfold me in the warm glow and have me fixated on its beauty or be the spark that sets everything alight and burns with destruction, who knows. We all do what we think is right for us, at any given time, regardless of whether that sits well with those around us, or we at least try to.

So, where does resilience fit into it all?

Well, for starters, there’s the Hydro rollercoaster ride:

  • Every time I’ve had to work my way back to normality physically, after an episode of being symptomatic,
  • Every time I’ve had a test result come back as being “normal” when I know in my heart it should be showing something else,
  • Every time I’ve felt like Hydrocephalus has won,
  • Every time I’ve had to go in search of a new GP, Neurologist or Neurosurgeon and gotten my hopes up only to be let down,
  • Every time I’ve felt like my voice was falling on deaf ears and I was being ignored by everyone around me,
  • Every time I was led to believe I was suffering from depression, that this is all in my head (Isn’t that ironic?)
  • Every time I suffered in silence in the confines of a room with a house filled with people, totally unaware,
  • Every time I’ve managed to put on a smile for the rest of the world,
  • Every time I’ve tried not to talk about having an incurable condition to others because the level of discomfort in the room and awkward silence grew glaringly obvious,
  • Every time, I’ve asked, “Why me?” and threw a pity party for one,
  • So many times, so many things…a never-ending list. (Just look through all the posts on this site alone).

If coming back from all that and functioning as a “normal” member of society, doesn’t smack of resilience, then I don’t know what does. The point is; This is my life. I have this condition. I am the one living with it. And, I am only one of many across this globe diagnosed with Hydrocephalus. Each and every person living with it, or any life-threatening illness for that matter, is forced to develop an extra layer of resilience to see them through.

Every. Time.

They are cloaked each time they overcome another challenge on their path. A cloak which, for some, becomes heavier with each passing hurdle. And yet, your level of resilience increases as it grows on 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!

2 Comments

  • Bill Bakos

    May 20, 2020 at 2:03 pm Reply

    I’ve been there, almost 5 years after my first surgery (ETV) I went to the ER with headache, disorientation, slurred speech and double vision. The doctor assumed I was drunk (I was 20 years old at the time and this was around 2 or 3 in the morning). After eventually getting a CT I was life flighted to a hospital to get my VP shunt placed.

    • Skyewaters

      May 21, 2020 at 7:50 am Reply

      I would like to say “unbelievable” but I’d be lying. It frustrates me to no end that we have to be in such a state before they will do anything and even then, nothing will happen unless the scans show something.
      I hope your shunt is working well for you. Thanks for commenting ?

Make yourself heard and contribute to the conversation

This site uses Akismet to reduce spam. Learn how your comment data is processed.