For better or worse…in sickness and in health…till death do us part…
When Hydrocephalus made itself known and stepped into my life, nothing could have prepared me for the road that lay ahead. Age 29, married, 2 kids and in the prime of my career…I would never have thought (in time), I’d be stepping into an “affair” that would rock my world and cause me to feel like I’m breaking my vows. There’s been some real challenges along the way, for me personally, and some which I can only make sense of at a snail’s pace and in hindsight. Like finding out how brain injury affects you and also how brain surgery equates brain injury.
A fellow Hydro sister pointed out that having an incurable condition like this, is like being in a relationship with someone else, outside of your marriage i.e. having an affair.
I let that sink in for a while…
For the person diagnosed with it, there’s just no escape from it: Physically, mentally, spiritually or otherwise. I don’t even think it’s a matter of “not letting it consume you” because for some, affected more adversely, it’s entirely not within their control. Everyone deals with life differently, there’s no right or wrong (not when it comes to living with an incurable condition and most certainly not as far as I’m concerned).
Truth be told, I’ve never really thought of it like this before, but I can certainly see the correlation.
Over the years, I’ve been through so much and have seemingly reached a point where I feel as if I’m living my life this way. One where I mask my fears, concerns, uncertainty and the myriad of other feelings by carrying on with life as it was, pre-diagnosis (my view of which is skewed and distorted by fragments of memories from a life (my life) which makes no sense sometimes).
This compared to the life I live through this blog, Skyewaters, where I freely share my fears, concerns, empathy for others like me and so much more. It’s a life where, for the better part, I feel like “I belong and have a purpose”. A feeling which is probably more akin to having developed a split personality because of it all. But, just to be clear, I don’t have a split personality!
No matter what I do though, I can never go back to pre-diagnosis me!
Loneliness, isolation, arguments, stress, financial burden, denial and resentment
I cannot speak for my husband or how my diagnosis has affected or changed his life, not in any way, shape or form. I can only speak from where I stand and what I observe happening and how it makes me feel. Some may relate, others not and this is OK. The lack of discussion around how this condition will affect you, some would say is debatable. The loneliness and isolation which breeds inside and around you, is all consuming as you grow painfully aware of your reality. The arguments and stress which ensue because the person you’re with, believes that you are “fine” because you “look” fine. The financial burden increases with each doctors’ visit as you seek help which inevitably goes nowhere and leaves you looking like the “boy who cried wolf”, one too many times. You start harbouring resentment towards them because they seem to be living a life of denial where they somehow don’t get the full impact of the words, “incurable condition”. More importantly, they’re not there for you, in every sense of the word. And, a response like: “But what do you want me to do about it? There’s NOTHING I can do!“, just evokes ill-feeling and adds fuel to the flame burning inside of you. This is regardless of the fact that you know this to be true.
Sometimes you can’t physically do anything to ease the suffering of someone else but being empathetic, understanding and even just listening in silence goes a long way…
The impact of knowing this is an incurable condition, is something you understand fully from the first moment you read your report or hear the words being uttered. Your entire wold changes. It’s something you can’t simply ignore or break free from…But, as someone else pointed out, “There’s no cure for Hydro but there’s also no cure for life”. Touché!
The words, “for better or worse, in sickness and in health” seem to lose their meaning…
Consumed with thoughts and distracted
The amount of time where you are consumed with thoughts of the unknown, facing the fear of when (not IF) you’ll next need brain surgery, and if your treatment option is failing, is sometimes overwhelming. It’s a world only you are privy to and one where you are constantly distracted, tormented in silence by the effects the condition has on your body as the pain throbs in your head. Making you feel unwell to the point where death seems a better option, with no escape route in sight. (Incurable…remember!).
If you’re “lucky” enough to actually enjoy life and not focus on it too much, then treat it as a blessing because not everyone is as fortunate.
Strain, hidden agenda, justifying your actions, secret relationships, the split
From a marriage perspective, you make certain promises (but in hindsight), I may have been too young and naive when I made mine. Nothing can truly prepare you for the moments when life happens, not even to say, “everyone goes through this”. The strain you endure because you develop a hidden agenda where you end up justifying your actions, thoughts and deeds. Inevitably, because you feel alone and misunderstood, you develop a need for inclusion and understanding leading you to go in search of others like you, and once you’ve successfully done that, the split is official.
I didn’t quite understand that until now.
Some people with whom I’ve connected, either through Facebook support groups or my blog will never be known to my family. (Not because I exclude them but because they simply don’t want to be included). They are more like “secret” relationships where the things we share, laugh, cry and talk about are more like sharing an inside joke, except, this is NO joke! Finding support, is like finding a tribe with a need for inclusion, understanding and a space where you get to live and breathe. A safe place where you get to be yourself when you feel ill and weak, a place where you feel more at home and part of a family who are not blood relatives. You say you’re not feeling well and immediately have a rally of people surrounding you, appreciative of the possibility of it all and they see it through with you till the end.
Broken trust, growing apart and losing what you have in common
I can certainly see how trust can be broken, especially when the vows we take seem insignificant because the person you most need support from, isn’t present when you need them the most. You shouldn’t have to look for support and understanding from others but the people in your life won’t always be in a position to give that to you, for whatever reason.
Is it a case of overcommitting yourself?
When the path splits, you grow apart and slowly start losing what you have in common. I’ve had to focus so much of my energy, carrying the load of this condition on my own, that I don’t recognise a place for anyone else in my life who hasn’t shown enough interest. The road split for us at some point and, as unsure as I am of just when that happened, I’m willing to bet my life on the fact that it certainly has.
Betrayal, hurt, pain, anger, outbursts
There’s a feeling of betrayal when you realise that the vows you took, somehow don’t mean as much in reality. I don’t know who let whom down more, but I think we both have a hand in this. The hurt, pain and anger are all too real as the years of not understanding the effects this condition has on the person living with it, comes into full effect. Every little outburst over the years effectively comes to the fore and you realise, a little too late, that the damage has been done.
I’ve said it before, when the symptoms of Hydro affect me, not even I want to be around myself…
You don’t get me – I’ve changed
The gravity of this condition has hit me fully, it’s something I can’t simply ignore. The experiences I’ve had over these last few years, have shaped my way of thinking and how I react. I’ve changed! (Not by choice).
Some days it’s a matter of choosing your battles and knowing fully that Hydrocephalus, an incurable condition, it’s bigger than you and I.