Hydrocephalus: Do you ever downplay your condition?  If you do, do you think it affects how others react or respond to you?

Hydrocephalus: Do you ever downplay your condition? If you do, do you think it affects how others react or respond to you?

Some would say Hydrocephalus is not a big deal.  I know quite a few people who have actually said this to me but, I also know quite a few who would claw your eyes out for uttering those words. (Ok, maybe not that extreme but they’d definitely take offence).  Some people have their ignorance to thank as they simply can’t and won’t ever reach an acceptable level of understanding or compassion.  Then there are some who, I suppose, feel Hydrocephalus isn’t that bad simply because, they have another condition or disease alongside it to compare.  Something which, in comparison, leaves them feeling like one is worse than the other.  Based on this, I cannot say they are wrong and I am right purely because I am not in their shoes.  Or, it may even be that Hydrocephalus has been kinder to some, and yes, this very well could be the case.  But what I do know is, it’s different for all of us.  Our Hydro journey is different, much like a salary: 

  • Some of us may not even have a job or be in a position to hold one down because the condition affects us to the point where we cannot be self-sufficient or contribute to society = More surgeries than birthdays and feeling like you’re caught up in a never-ending Hydro-brain-surgery loop. 
     
  • Some of us may have a low paying job and struggle to make ends meet = Full effects of daily headaches and brain surgery with a few months/years of, catching your breath moments in-between. 
     
  • Some of us may be or are comfortable enough to survive or, may not even have money worries at all (at least not like the others) = Hardly ever gets headaches and, our treatment option has been working for a few years, decades even.   (Though this doesn’t mean brain surgery isn’t on the cards in our future). 

To discredit those who do not fall into the same category as yourself, purely because it’s not your experience, is borderline cruel.   

Hydrocephalus is by no means an easy condition, nor is it something you can just ignore.  People have and continue to lose their lives because of it.  But, that’s not the point of the post. 

I’ll use myself as an example, as I do.   

I try not to emphasise this condition too much in my daily life.  That may sound contradictory when I openly blog about and share my innermost thoughts, fears and feelings about Hydrocephalus, on this site.  But, when it comes to my family or friends, it’s hardly ever talked about.  What I share in my blogs is never discussed with my family.  From time to time, I will have moments where I just blurt out my fears and concerns.  This is the point where my internal pressure cooker is at its peak!  (I guess that happens when you keep things locked up inside, something I’m quite prone to do).  A sight not displayed to just anyone either.  My children have seen it but have a limited view, I try to muster up just enough self-control around them especially as I remain cognisant of the fact that I wouldn’t like to harm them (Failing at that miserably as mentioned in my last post).  My husband is probably the one person who has seen me break down most, as it should be (I suppose).  However, with his ostrich/glass half full personality he chooses not to focus on the negative.  It’s not necessarily a bad thing BUT, it does irk me when it clashes with my obviously opposite personality-type.  This is probably part of the reason why I forcefully limit myself in just how deep my vulnerability will go with him.  (Not good for a marriage but, you do what you have to, to survive – Marriage is overrated anyway!).  I do feel though that having an outlet or someone to tell exactly how you’re feeling, is a good thing.  Heck!  It doesn’t even have to be a person.  Some of us humans prefer talking to animals.  I’m not too sure about cats, but dogs definitely listen.  I remember when I was younger, I would talk to my dog and get the most attentive look, turn of the head and even a paw offering comfort…  (Note to self: add a dog to the bucket list).  Having a few Hydro buddies has definitely helped along the way too! 

It’s about getting it out, the full extent of the reality.  Being as honest as possible and staring the beast squarely in the eyes.  You don’t need to dwell on it, you don’t need to linger in the space too long but you need to acknowledge the fact of the condition you have.  I get that there’s nothing I can do about the fact that I have Hydrocephalus, I get it’s a part of me now.  I accept that.   

In all honesty, I AM guilty of downplaying my own condition and maybe I am the one who shows others how to react by way of my attitude towards it.  Words like “Ah…it is what it is.  I’m fine…!” (especially when I’m not), have literally left my mouth.  But, the burden of this condition does weigh heavily on my shoulders because my level of understanding, is so much deeper than the people around me. However, I cannot and will not own the way others react or their attitude, any longer. 

If I had to be honest, I don’t mind if people know I have this condition BUT, what I don’t want once they know is: 

  • To be treated differently because of it. 
  • Dismissal or ignorance of the challenges which they are not able to see.  And, making me feel like I need to prove myself or anything else related to it, for that matter.  (I’m hard enough on myself in that regard). 
  • Avoiding or ignoring me because of it. 
  • Being weird about the fact that this is an incurable condition.
  • Not being able to talk about it or vent when I feel the need to – it’s a rollercoaster ride and there are bound to be good as well as bad days.
  • And, probably MOST IMPORTANT of all, expect me to just “Get over it” or, my all-time favourite, telling me to just “Suck it up!” 

Taking an active interest in me as a person, how this condition affects me and offering to help would be awesome (I may turn down the last one since I’m such a “Miss Independent”).  It would be nice though…Also, empathy goes a long way. 

Realistically speaking, I don’t think the seriousness of Hydrocephalus can ever escape me, no matter how I “appear” to minimise it.  People often say “You shouldn’t dwell on the past” …I agree – to an extent.  It’s a place I don’t often like to visit yet, I feel myself getting drawn in by it from time to time.  I visit, let the memories play out and I allow the emotions to catch their breath.  Some of these memories may be fragmented, some may cause immense joy and calm and some, well…let’s just say they increase the level of gratitude I have, tenfold.   

Brain surgery could go either way, hell, any surgery could go either way.  I’ve been there and so too, have many others who have needed brain surgery as a treatment option for Hydrocephalus.  The shards of memory, regardless of how incomplete, from my 3 brain surgeries over 3 days and a week in ICU, does not escape me.  So, for this reason, I could never downplay the seriousness of this condition.  Surviving that, looking at my daughter who was merely a 5-and-a-half-month-old foetus at the time but, a healthy 9-year old “sassy” girl now, the level of gratitude can only increase with each visit down memory lane. 

So, to answer my own question above, for myself, I’d say:  Yes, I do and yes, it does.  Whether it’s a good or bad thing, I don’t know.  Maybe some situations and personalities require us to be that way.  Maybe it’s the level of comfort/discomfort we experience when faced with a particular situation.  What I will admit though, for me personally, maybe it’s something which requires me to look a little deeper and change a few things around me.  It’s no use expecting others to know, understand or treat us a certain way, if we lead by example. 

Just some food for thought… 

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!

6 Comments

  • Ron Kelleher (Hydropioneer)

    August 11, 2019 at 2:14 pm Reply

    Anyone who tells me our condition “is not a big deal” is the most ignorant response that can be said. I would love to be able to let them walk in my shoes for theirs. I can guarantee they be begging for mercy for me to remove them. What I never thought would happen was your family making those responses. I complain about the heat & I get ” I am not hot ” weather can’t cause your headaches, or “stop dragging your foot when you walk” I downplay my condition when sometimes I shouldn’t because I end up paying for it in the end. I just refuse to let it rule my life. Another thing when it does rule my life & I have to lay down DON”T label me as LAZY! We are able to do things like those without our condition but we just have to think it out. Please don’t interfere trying to do it for us we can ask if we require some help. Don’t make assumptions that we can participate in functions I can decide that!

    I think that is all I have on this subject with only 1 cup of coffee. Thank-you Celeste for yet another “shuntastic” article.

    • Skyewaters

      August 12, 2019 at 9:48 am Reply

      Thanks for sharing Ron and, you’re welcome!

  • minionmayhem514

    August 11, 2019 at 12:36 pm Reply

    I have the problem of figuring out how much to share. For example, my daughter’s new teacher at preschool needs to know about her condition. How do you tell someone that the visually healthy child they see in front of them has a brain problem that could result in serious brain damage or worse if not treated WITHOUT scaring the daylights out of them and getting phone calls every time she is the least bit “not herself”? On the other hand, if I downplay it, she could be complaining of a headache all day and they could just blow it off. I think I’ve hit the right note in the letter I wrote this year, but I’m worried about middle school and high school (age 11-18) since that’s the typical age when teachers assume kids just want to get out of class. By then, she will know what’s going to happen if she tells me she’s got That Kind of headache, so if she’s willing to tell the school she has a headache and needs to go home, they had better call me. But on the surface, sending a kid home for a headache seems stupid.

    • Skyewaters

      August 12, 2019 at 9:46 am Reply

      That can be a tricky one. I can’t really offer much in terms of my own experiences since I was diagnosed at 29. However, I think you raise a valid question.
      I know it’s not a fair comparison but, my daughter has selective mutism. So, each year I make sure to have “the chat” with her teacher to make sure they understand she has different needs. The anxiety it causes her to speak to others makes me feel helpless. However, I feel that if you make the situation clear, explain all there is to know about dealing with your child, then it’s half the battle won. In your case, I would rather share the seriousness of the condition as being vigilant can only benefit your daughter. They need to be your eyes and ears when you are not there. Besides, I’d rather cry wolf than deal with the effects of downplaying the condition.
      Might be a good future post to ask other Hydro parents?

    • Anonymous

      August 20, 2019 at 12:34 pm Reply

      I down-play my child’s condition with her teachers and let my child play sports, including soccer and flag football. She’s done wilderness day camp and man, I’m nervous the whole time. I don’t want her to feel like an outcast and want her to enjoy life. She got hit in the head once by a basketball and I was first to bring her to her pedi. She was fine, headache, but it was scary. Last week. She was with a friend and got headache and threw up! I watched her like a hawk, believe not shunt but she had heat-stoke and dehydration from a very hot day and two mile hike l, I believe.

      I am up in middle of night Nervous… which led me to this website. The anxiety is felt and validated at this site! : ) I’m thinking meditation might be helpful for me and daughter. Maybe for y’all as well? I’m a helicopter mom, as it is… I am really afraid for her to get hurt. I feel blessed we have shunt to keep her alive. Carpe diem!

      • Skyewaters

        August 20, 2019 at 9:29 pm Reply

        I can resonate so much with your comment. As a mother first and foremost, I know what it’s like to be like a hawk around your children. And, as a mother with Hydrocephalus, I understand even more the anxiety you feel.
        As long as you educate yourself enough to advocate for her, she will learn to do the same for herself when the time comes💙

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