Hydrocephalus : It’s the little things that count…

Hydrocephalus : It’s the little things that count…

Have you ever looked at the next person, listened to their story and thought “Damn, I thought my situation was bad…“?  Well…I have in more ways than one and on more than one occasion too.

As an example, last year, a friend of mine was diagnosed with Cancer.  Since I don’t live in the same country anymore, I contacted her via Facebook Messenger when I got the news.  The nature of our conversation is not important, however, what she said to me is something that rings through from time to time.  “I hope I will be as strong and positive as you have been“.  I was hopeful that she would pull through and survive.  Sadly, my friend did not live very long after her diagnosis…my heart ached for her family and at the loss of her…

Through my posts on Skyewaters.com, I’ve had so many people who have reached out to me and shared their stories, ask for advice and who I’ve even ended up giving a bit of encouragement to.  It’s been and continues to be, an extremely humbling journey, one which I hope makes a positive difference in this world.  I love that someone else regards what I have to write in my blogs as something that they can gain from.  Most times, I write about things that affect me and other times, I use the emotions from others to get a message across.  However, it’s these interactions and comments like my friend made, that make me sit back and think about all of it.

I’m just an ordinary person, I have my good points as well as my bad (just like everyone else).  I’m also trying to navigate through this thing we call Life and make the best of the situation that I’m in.  I know I have Hydrocephalus and I’m very well aware that it’s an incurable condition but…(and this is a big BUT) I don’t think that it makes me more important or special than the next person.  I also don’t think that anything I’ve been through and survived, has been of my own accord.  I cannot for one minute think that having had 4 brain surgeries (compared to others, this is a drop in the ocean) and being alive today to tell others about it, has anything to do with the human being that I am.  I have to believe in a higher being…and that is where the Awe and Thanks needs to rest.

If I had to put it into words for you and describe how it makes me feel, I would probably end up saying that I feel like an outsider looking in.  Most days, I see myself doing and saying things (in a positive way), that just don’t feel like they’re coming from me.  I don’t recognise myself and I certainly don’t feel that I should be put on a “pedestal” because I’m different in comparison to the next person.

Coming back to what my friend said, maybe she was right or maybe she just saw me in a light that I don’t see myself.  It’s not easy being strong and positive all the time.  Truth be told, I have so many days where I go through depressive states and, whether this be because of life experiences, age or part of the condition, who knows.  The fact of the matter is, I realised a long time ago, if I don’t accept things for what they are and if I don’t push on, I’m going to get left behind and wallow in an abyss of self-pity and depression for years to come.  I might as well declare myself legally dead.

Most days, I physically don’t have the energy to carry on.  Most days I question why it is that I am still here when my physical body betrays me and causes me a world of grief and pain – not just because of Hydrocephalus.  But, I know that there is no answer…not yet anyway.  I soldier on, I find a way to make it through the day and give it whatever I have in the tank…

Fellow blogger and friend, Terence Brown of Helpgrowchange.com, wrote this about meMy friend has Hydrocephalus. I cannot begin to understand how hard it must be to live with something like that or any other debilitating condition“.  You can read the rest here.  The funny thing (not ha, ha, ha funny) for me is, when I heard about my friend having Cancer, I couldn’t imagine having to deal with something like that (regardless of the fact that I myself am living with an incurable condition).  And then, Terence goes and writes his article, which makes me respond with the words “You never know how strong you are until being strong is the only choice you have“. – Words I’m sure many of you have seen before.  More than this, Terence himself has a few “challenges“…he wears hearing aids and glasses and jokingly says he is “blind as a bat without them“.  Our challenges might not be in the same league but we all have them – regardless of how big/small/insignificant or deadly they may be.

So, from one ordinary person to the next…lets just do the best we can with this one life we have and maybe follow Terence’s advice “Just take a little of your time each day to acknowledge just how lucky you are.  There is just no time to waste in our lives.  Every moment should be cherished“.  I agree with Terence, it’s the little things that count.  For me right now, I’m thankful that my Hydrocephalus appears to be under control (hope I didn’t just jinx it by writing that!).  How long that will last, is anyone’s guess.

But, I’m thankful for each day…


  • Anonymous

    January 16, 2017 at 11:45 pm Reply

    I have hydrocephalus, I worked with children, hydrocephalus didn’t stop me

    • Skyewaters

      January 17, 2017 at 5:27 am Reply

      That’s great. Set no limits ?
      Thanks for commenting

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