Part 1 of 2
However, my question is sincere and this is why…
Having hydrocephalus and enduring brain surgery (repeatedly) takes a toll on you. We never really know what the effects will be. Symptoms, surgery and recovery, may differ with each operation, per person. For those of us diagnosed with it, we may have the same condition, but that doesn’t mean our journey is the same. Therefore, some may relate to what I have to say, some may not. Regardless, hopefully this post gives you food for thought, understanding as a support person or validation, should you need it.
In less than a year, I’ve had 4 major surgeries, 2 of which were brain surgeries. A brain bleed during the first one (Repeat ETV, May 2021) left me taking a detour on the road to recovery. Compared to my recovery from the 5 (brain surgeries) before, it was, to say the least;
Longer. Painful. And, excruciatingly slow. (I suspect I may have some residual effects from this one – more on that in part 2).
It left me traumatised, for lack of a better word…
I used to feel some sense of control over my life, that’s no longer the case.
Since then, I had surgery again (VP Shunt April 2022). I struggle to describe it but, I honestly feel like I’m losing my mind. Cognitively I’ve been struggling. Negative self-talk and self-doubt in my abilities are crippling my mind. My memory seems worse. And, adding fuel to the fire, past life traumas have been resurfacing, tormenting me, just to add to the “fun”. (I won’t go into specifics…)
I’ve shared my concerns with those closest to me and have been met with a mixture of responses:
- “Don’t wish that on yourself” – Seriously?
- “Oh, you’re just being hard on yourself!” – Am I really?
- And, the cherry on the cake – Silence and blank stares… – SIGH!!!
The result; I’ve withdrawn from, and feel let down by them. It makes me wonder if this is the point some people get to, when they reach out for help, and those around them “fail” in their response. (I’m even understanding enough to excuse their responses as “well-meaning” or “they’re unsure of what to say”).
Regardless, it hurts…
In a previous post I made an example of feeling like I’ve been buried alive. Can you even imagine what that must literally be like? Just writing the words causes me to feel the suffocation, making my skin crawl! BUT, it’s probably the best description I can come up with, to be honest!
Another example I made a while back, while talking to a friend was; “I feel like I’m on a downward slope, trying to prevent myself from falling but I can’t. I feel powerless to stop it…”
Needing to make sense of it all
I’ve started looking into the effects of anaesthesia, since it’s the only explanation that makes sense as the cause of what I’m going through. There’s enough information available online for me to confidently lean in that direction. I know it isn’t a medical diagnosis of what I’m feeling or experiencing, however, I firmly believe our bodies can only take so much. It’s a literal catch 22 situation purely because we have no control over this incurable, invisible and unpredictable condition! The trauma and risk of surgery is something I never really gave much thought. Truthfully, I couldn’t fully appreciate the possibilities of it all. Like accepting the Terms and conditions of a new app or download, without reading it. (Too much legal mumbo jumbo, right?). So, you click “Accept” or “Next” without much thought about the end result!
I see things differently now and, it’s left me wondering…
Surgery of any kind comes with risk, brain surgery is no different. However, the harm done each time, is something no one can truly quantify.
Have the surgeries I’ve had over the past two years done more harm than good? (Again – rhetorical).
Another added possibility is that the older we get, the more challenges we face (of a different kind). Whoever said ageing gracefully is a thing, must’ve been smoking something I’m yet to discover!
We all tend to think about the sands of time running out on our life, at one point or another. In my search for understanding, I’ve even started wondering about Dementia or Alzheimer’s (I’ll expand on this some more in my next post), thinking about what that must be like. Especially because, under certain “normal” circumstances, some of the elderly are misdiagnosed with either of these conditions, when in actual fact, they have hydrocephalus. (Again, sharing this “fear” with the same people I mentioned above, their responses were more or less the same).
Playing the “what if?” game gets you nowhere – for the record!
Admittedly, I do worry about a lot of things. I constantly worry about my kids and not being here for them (something I know I can’t avoid). OR, being affected cognitively to the point where I am unable to provide for them. Being like a duck has taken on a new meaning!
THIS is probably the biggest fight for survival I have with myself, right now…
Realistically and Truthfully: This condition has taken a well-functioning member of society and reduced her to a lesser version… and before you tell me that’s not true, I would respectfully ask you to rethink that.
Despite it all, I HAVE to be a functioning member of society, work to earn a salary to enable me to pay my bills and take care of my family, until I physically can’t anymore.
What we end up putting in every day, just to be, is so much more than you will ever know…