I don't know how familiar you are with this story so I'll give you a quick run down.
The story goes; Damocles was a servant of King Dionysius, a tyrant at the time. One day Damocles exclaimed to the king, that as he had such power and fortune, his life must be easy and wonderful, how fortuitous. So Dionysius offered to his servant the opportunity to swap places with him, so that he could feel the the power that he longed for. Damocles eagerly accepts this offer, and couldn't be happier. But as Damocles sat down on his new throne, he looked up to find a sword hanging above him, held only by a horse hair. Damocles turned and begged his king to let him go to his old position, as he did not want to live with this constant fear.
Basically the king had conveyed the constant fear a man in his position has looming over him.
This is the best way I can describe my situation, my AVM can burst at any time and end me. There are no factors involved that can prevent this, or make it any worse, it will just happen.
So I have two options;
1) Live in constant fear of it happening.
2) Know that if it's going to happen, it will just happen, and carry on as normal.
But it's not as simple as that, we're human beings after all. Every time I get a strange feeling in my head, it scares me to death, which is pointless in theory, as doing this will change nothing.
So I'm now stuck between these two points, I know that option 1) is completely understandable, but it's no way to live. With the brain damage, this is particularly hard to get out of, seizures are just the cherry on top. So if I'm not worried about seizures, I'm worried about a stroke.
I've had surgery, but my AVM is huge, and diffuse, so opening my head and taking it out is impossible. I've had radiation surgery, but that's no guarantee.
So I'm a bit stuck at the moment. My point is, how are you all doing? It's a tough now, so how are you feeling? I'm sort of white-hot furious today.
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My recovery is over 13 years on, I still find it frustrating at times. I can understand, hypothetically, where your life is at right now. Hence the dangling sword analogy. My grandfather has a aneurism, he is 91 and has had a life and children and all that stuff ( including a stoke which led to the discovery of the aneurism in the firs place). due to age it can only be monitored but not operated as it is not certain whether he would survive the anaesthetic. I apologise if this isn't quite what you wanted to hear but I really do empathise with you.
live a little ( laugh, cry, offend, defend, apologise too ) but most important - love a lot.
Never a 'last blast' at all. Another page in so many more times. An unforgivable and unremitting adventure. Anger, for sure. But so much creativity for (us) all.
Look around! There are so many doors to open! The most wonderful tales to tell! I am no evangelist, rather a realist/scientific rationalist, but always with a vision of epiphany.
I just had one of my best days, took my son to an open day st the Uni he wants to attend, it was a long day but we had the best time, I managed 7hours walking attending talks etc,we even went shopping after, then it was back home to make the evening meal, fantastic, apart from feeling like an alien all day, just shows how much I can do ,in small doses not every day but it's another step xx
We went to our first Headway meeting last night....at last. We tried a couple of times but the time was never right. My husband had his burst aneurysm in October, followed by a SAH and stroke .Things just seem to be at a standstill, very little progress with physio, lots of other medical problems that have cropped up since, kidney problems, blood clots in his lungs, a hernia and lots of joint pain etc etc . He still has HAD NO FOLLOW UP APPOINTMENT, still has not had the bone flap replaced in his skull, and like you B S A feels like he is a ticking time bomb.
We have good days and bad days, sadly the bad ones seem more frequent than the good ones, and we despair at how long we have to go on like this without something positive happening.
But going to the meeting last night was a huge step. It was the first time Steve had been out after tea time in 8 months, the first time he had met and spoken to other Brain Injury sufferers and carers, and heard people talking about things familiar to him.
The people were lovely, very welcoming and we are looking forward to the next occasion to get together.
I do feel meeting up with and talking to others in a similar (never the same) situation is such a huge help, and Im hoping we will go on to get more help and support from this amazing organisation.
Hang on in their B S A life is full of surprises, yes, not all of them are good, but believing things WILL get better is a good way to go.
I think I was just having an off day, which strikes me from time to time. That and my medication went up again, so I felt like a zombie.
That's great that the meetings are doing good things for you, you guys seem to have gone through a lot more than me! I went once before, but I wasn't too keen, I might try again if you think it would help.
Epilepsy is a nightmare, but I have a few friends with it, and they say it's just trial and error until you get the meds right, then you get used to them, and then you're all good, so there's hope yet.
It does get better, & as Molly15 says, life still can be rich & rewarding, after all very few people get to live life on the edge where life can be so much more... (life is mostly its boring & humdrum etc., for the rest of us), so: "carpe diem" (seize the day) & put your hands around it's throat & squeeze back?
On the other hand everything has to die, you, me, even the universe itself, so really, are our situations so different? The real secret is, in knowing not that the sword is going to fall (for it will fall for us all...), nor that there will be something that we have not done (for that will be true how ever much we do...), it is in accepting this and living, loving, & dieing, in spite of that? You may well regard it as a gift, because it frees you to do what you want...
Being happy, sad, pride, achievement, riches, etc., & knowledge itself are all relative & subjective, you decide what you want, don't let how you are dictate what you are, live it, be it, do it...
Hello, and do write more. I feel certain all our thoughts on these matters are if not somehow, in some way, almost equally felt, then are our own Pandora's chest of our unusual treasures.
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normal days like that are nice.
Ben and James versus the Arabian desert
Reaching the end of the line
Son battled through again.
Ongoing pain post crainiotomy
