Hydrocephalus : The friends and family you lose when living with an incurable condition

Hydrocephalus : The friends and family you lose when living with an incurable condition

I have only ONE out of the countless types of incurable conditions which exist at this point in time.  ONE condition amidst ALL other illnesses and diseases that plague the human race.  Therefore, I can only speak from the confines of that which afflicts me.

I often hear the saying that “during times of difficulty, you will find out who your true friends (and family) are”.  Some of these people, will become your closest allies and provide a huge source of strength and support.  They will rally around you and sit by your bedside tirelessly, in silence or bubbling away in chatter (In an attempt to provide some form of “normalcy”).  Some will go to extreme lengths to ensure your sanity stays intact and pick up on the tone you set, via your attitude, towards your current state.  Then, there are those individuals who will ignore, mistrust or plain simply play down what you are going through.

A condition like Hydrocephalus is nothing new in the grand scheme of things or the way in which people choose to react in certain situations.  

Visiting a friend a few days ago in hospital, who has been unwell to the point of temporary memory and vision lapses, ultimately brought this home to me.  I’ve been curiously standing back and taking in the reactions of those around me…Friends who put (obvious) distance between themselves and our mutual friend.  It’s not that they don’t care or that they are heartless (I’ve convinced myself because I do not wish for it to be true).

I’m thinking of most of them, it’s because they ‘fear‘ what they don’t know.  They stay away because they don’t know what to do or say.  They are uncertain of his reaction and therefore avoid putting themselves in the uncomfortable position of having to deal with it. My husband is one of these people who didn’t see the sense in visiting our friend especially at the chance of him not being remembered.  He is more of an ostrich personality and prefers to focus on positivity and all things good.  (Nothing wrong with that).  We’ve since visited our friend together and as it turned out, his memory wasn’t too bad at the time – my husband will go visiting again.

As for me, I approached it a bit differently.  (This by no means makes me right and others wrong – it just means we are all different).  To make sense of it, I think of it in the same way as some people being able to comfortably stand up on a stage and speak to a room full of people and others who are not – the introverted vs the extroverted.  I’ve heard people say, too often, if only I visited him/her while they were still alive.  We miss the opportunities presented to us and ultimately end up living with regret.  Likewise, there are family members and friends who avoid us, with Hydrocephalus, because of the same reasons (or close enough).  

It’s made me think of the members of our friendship circle a little differently…

A few weeks back, one of my closest friendships ended abruptly as well, simply because she felt I’m obsessed with my condition.  In the same vein, I have family members who are none the wiser about my condition, what it is or that there is no cure.

I used to have the opinion that “close family don’t give a s**t”.  I don’t anymore.  I’ve made peace with the fact that we are all different and handle situations in ways that only we understand (and sometimes, not).  I might not like that they don’t take a closer interest in what I’m going through medically but that doesn’t mean I don’t forgive them for the way they choose to deal with it.

The way I see it, in order for them to gain an understanding of what I’m facing, I need to see the world through their eyes.  Sure, we might never see eye to eye but at least I won’t make myself sick and bitter trying to get them to understand a condition that clearly doesn’t affect them.  And, if it means I walk away from the relationship then so be it, like in the case of the friend I lost.  Or, I might end up staying in the relationship but just not go “there” with them at all.  It’s not so much protection for them but more protection for me because it means I don’t get upset with the “unspoken” reason for their avoidance or “ostrich ing” (yes, I just made that up) when it comes to my situation.

Life has taught me that there will always be casualties in most situations.  What you do with that knowledge is entirely up to you.

Accept, live and move on…Or become bitter and live the rest of your life in misery.

It’s your choice…

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