Hydrocephalus: Wow moments and leaving a legacy behind

Journey of life

Talking to a colleague of mine the other day, Ravi K., the discussion stumbled across me having Hydrocephalus. His curiosity peaked, I cautiously explained what it is and how it is treated. It was quite amusing to hear him repeatedly say “So you’ve been cured” leaving me to explain that there is no cure just treatment, each time. He looked amazed…

These kind of discussions unnerve me to a point, at the onset at least, but eventually I reach a level of comfort. It’s unnerving because being in the corporate world and having experiences as I’ve had, unrelated to my condition, have made me aware of who I can entrust this information to and who not. Blatantly put, fears of being judged or even losing my job are at the top of the spectrum. This fear is probably born out of a paranoia that people will think me useless…which is what I feel (sometimes), regardless of the fact that I know I’m not.

However, the need for me to educate and share with the people I’m surrounded by, about this condition and causing a ripple effect in the big pond of this world we live in…is so much more important.

Here’s why:

  • There’s not a lot of knowledge about Hydrocephalus, not many people have even heard of it and more importantly, it does not change who I am if they know.
  • Whatever reaction people have to finding out about my condition and what I’ve had to endure and still do…well, that’s up to them.
  • Nothing I say or do will change the outcome.
  • I have not found a person who has been put off when I tell them I have a medical condition with no cure, just treatment. In fact, their reaction is quite the opposite.

They’re intrigued, curious and majority of the time I see a shift in the way they treat me. All positive though.

There’s always one or two who are just complete idiots, I expect an encounter with them. The people who have the ability to shrink your confidence to a grain of sand and make you doubt yourself, even if it’s only momentarily.  They don’t deserve such power in any way or form, so be aware of them.  These people, I cut off at the “limb” and move on…no loss felt because it’s not a reflection of who I am but clearly shows who they are.

If there’s anything I’ve gained from sharing my story, it’s the fact that I walk away feeling stronger than I do most days – emotionally, spiritually and mentally. I feel “proud” of what I have been through and more proud of the fact that I’ve actually accumulated “Wow moments” along my journey. Many people have a bucket list and feel the need to go bungee jumping or skydiving…for me, it’s surviving every day and getting to spend as much time as I can, with those closest to me.

I’ve said before, I won’t let this condition get me down (we all have our bad days) but it’s the getting back up and saying “Hell yes! Bring it on” or “Why not me” that gets my juices flowing and adrenaline pumping. I could very easily give up and I would probably be justified in displaying anger at God for cursing me with this wretched condition. But, let’s be honest, it’s not gonna get me anywhere now is it. I think all it will do is turn me into a miserable old cow and that’s not how I want to go through life or be remembered.

Lately, I’ve been on a mission to fill my jar of “Wow moments” (bonus if it turns out that I fill more than one).  A journey where I get to leave something behind for my children. A place where they get to go, long after I’m gone, to connect with me on another level. I most certainly will die one day (as all of us will) but leaving these posts behind, these living breathing words, will be a testament to what and who I am. I will leave them (this my children know) but for me, it brings satisfaction and immense peace to know they will have a piece of me for as long as they live.

For now, it’s this blog. I’ll be starting a website soon (watch this space) and fill it with all things related to me. This will be my legacy to my kids. They will be able to visit with me whenever the need arises and feel me close to them. Yes, there will be things that they should probably not know about or be reminded of but what is our life if not filled with both the good and the bad? I’ll be the first to say, life is NOT perfect…Bad things DO happen to good people and I am living proof of that.

The experiences I’ve had, am having, will have, are all what define me as a person. We all have them, these are the chapters of our lives, the stories we all have to tell, one way or another. Hopefully there’s something others can learn from, improve on and even steer clear of.

What legacy will you leave behind? Do you think it’s worth leaving a tiny footprint (your own) on the path of life?

Go on…give it a go.

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E-mail: skyewater33@gmail.com



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