Mourning the Loss

[B_S_A]

I used to wake up, and go through the usual stuff; stay in bed for a while, think about what I should do that day, think about what coursework I needed to do, think about exams, think about what time work started, think about who I was seeing that day. It was such a simple process that I never really appreciated, and it's such an easy thing to overlook.I just miss that clarity of thought so much, and it's just so painful to think about.

You know when you used to hear stories about people who've had something horrible happen to them? You'd think how awful it was, and then maybe say to someone; "That's terrible...something has to be done!". Then of course the thought would fade, and why shouldn't it? There's nothing to be accomplished by tearing your own life down to someone else's level.

I'm sure you know that feeling. That sharp feeling your stomach when it really hits you, and it hits you so hard because you miss what you had. It's that comparison that's the killer. It's like somebody stole something that you didn't even know was so precious.

Just to be able to get up, go downstairs, and cook some dinner. It's right there in front of me, and I know how sweet the taste of that feeling would be. I imagine that clear feeling in my head, that sharp image of the world, where thoughts were crystal clear. I'm not talking about emotions here, I'm talking about physical ability, that ability that everybody has, that ability that's now been cut down.

What I would give to have it back. There is no word or sentence in the world that could describe that feeling, and you know it won't ever really be the same, not really.

I really do my best to be fine with the new circumstances I'm in, but it really just makes me feel sick. I mean if your house burns down at least you can you can use the greatest tool of all, your brain, to think of a way out of it. The tools are broken now, so how in the hell are you supposed to build again?

I miss it so damn much that I don't even want to cry. I mean, I enjoy things like I used to, but it's just never the same. I always have that little part at the back of my mind that says; "Wait, are we having a seizure? Or maybe a stroke?". I try to think about it in a way that makes sense, but it never truly works. I can just bring myself to the brink of that old feeling of just being safe, but never any further than that.

Living with that every day? That's just...impossible.

[SAMBS]

oh BSA I really feel for you cos today I find my self in a similar situation but right now can't find the right words for you. If we were in the same room I would just give you a great big hug that wouldn't stop till it helped us both feel better - it wouldn't stop or solve either of ouur situations - but a cuddle can be so comforting when its from someone who understands where you are coming from - I am really desperate tonight also but just can't explain. Please read and accpt this virtual hug from someone in similiar place to you xxxxxxxxxx

[B_S_A in reply to SAMBS]

Thanks, I like a good hug now and then

[cat3]

No it isn't impossible. People all over the world are doing it every day because the alternative is dark and horrid and a complete waste. There are others who would feel so privileged to have your standard and quality of life because theirs is so much more impoverished and uncomfortable than yours. So it's all relative isn't it ?

I'm having a really cr-p time at present with severe headaches and dizziness meaning I can just about make it to the bathroom by bouncing off the wall on one side & the railings on the other. But I just pray(not literally) that it will pass because I'm told "It's all part of the syndrome" and "keep taking the (useless) tablets"

And every so often something else comes along to incapacitate me. So I can either lie down and give up or I can tell myself that this is my life ........it's all I'm going to get........so better appreciate the 'able' times to compensate for the lost ones.

You're young and there's a good chance that your medication can be tailored to bring about radical improvements to the point where you can get on with uni. and have a decent quality of life. What do you say Ben ? x

[SAMBS in reply to cat3]

Hi Cat sadly, its not always easy or possible to know or under stand what anyone here on Headway forum's quality or standard of life is - but whatever it is is still does make coming to terms with the effects that a SAH / aneurysm has on the individual. All I know is that with the stress and pressure on me from other aspects of my life is not going away and is contributing to my own feelings of grief. Unfortunately I am still under that same stress etc so not being able to deal with that as well is very hard. I just know that like b.s.a life is like a grieving process, but let us all try and be supportive rather than judgemental of others.

[B_S_A in reply to cat3]

Hey, don't get me wrong, I get up and I go either way. As you say the alternative is pointless; I'm just grieving. The argument "some people would kill to be in your position" is one of the most infuriating things I've heard from people. It's like I have to hack all this crap, and I shouldn't dare to complain about it because I'm so "lucky" to be in my situation.

That's my point really; it's losing something that hurts.

I don't really mean "impossible", so ignore that. More like "next to impossible".

I hope you get better soon.

[cat3 in reply to B_S_A]

It's the word 'impossible'......it scares me because,personally,I can't afford to think that way, it's much too close to the edge. You know that I admire your determination and humour and I'm normally the first to advocate voicing one's feelings as part of the grieving process. I suppose I just worry about others,including you, and when I see a post so full of despair I have a natural instinct to offer an alternative view of things........anything to help lift that despair.

Because platitudes (as you once said) often just reinforce the negative feelings, and when I'm really down, it's often an intelligent assessment of the situation which lifts me from the gloom.

As I thought everyone here knew, I'm all for hugs and reassurance and I'm surprised that my comments have been construed in such a negative way. I wish only the very best for you, Ben. x

[B_S_A in reply to cat3]

Sometimes I like to just spill out all the stuff I'm thinking about at once, and dump it out of the way. Seems to work, because I'm pretty chipper today!

You were helping, and that's much appreciated, I feeling a bit of devastation at the time, that's all.

You're wonderful. and you've always been such a great help!

[cat3 in reply to B_S_A]

Thanks Ben...........xxx

[bikerlifestyle]

i think that the title of this post is also the answer, something died in all of that something ranging from our personalities to restrictions on our abilities

we have to grieve and we have to go through the stages, but the trouble is whereas literal death is a point in time on which you can fixate and time can heal, a brain injury is like dying every day and even though we may have grieved already, and accepted our situation, changes in our situation/health etc means we may have to be dragged through

the grieving process again and again. and thats not easy,

i have no words of comfort that i can offer (as i would be using them on myself as well) but hope you get through this

and although a lot of us have found the golden fleece of acceptance, even that does not make a difference when times get tough, all i can say is keep fighting

[B_S_A in reply to bikerlifestyle]

Thanks, sometimes I think it's just good to feel it as intensely as possible, as long as you can still function properly. It always helps me out anyway so it's nice to have a platform to do it from.

Don't worry, any words are good words

[ricozoe in reply to bikerlifestyle]

just read this post,and the bit about brain injury is like dying every day made so much sense to me,my emotions are quite muddled up at the moment, but your words have already helped me understand a bit more so thnkyou biker once againe uve helped two people with one post take care

[bikerlifestyle in reply to ricozoe]

you are vert welcom i just describe it how i feel it

[Kirk5w7]

I read these posts and weep inside, because you all put into words how I feel too, we are all costantly grieving for what we had, maybe it's the weather or time of year, I don't know, but I felt the same last year, or so my husband tells me , but we all seem to be suffering the same at the moment, to a similar degree, I'm having problems pulling myself out this time, I feel like I'm regressing not progressing. Each day is such a challenge to do anything, but worth the effort, I took some items I'd knitted for an old work colleague to her this week, and her delight was worth all the effort it took me, it's just I'd rather have been going to work! It's true when they say you don't know what you've got 'til it's gone.

Anyway, enough, I must get out of bed and on with the mundane aspects of life, thanks for providing the ear for me to bend, onwards and upwards! Albeit bouncing of walls, or staggering in none too straight lines!

Take care all, my heart goes out to all of you, Love Janet xxxxx

[SAMBS in reply to Kirk5w7]

thank you Janet - you take care as well.

[B_S_A in reply to Kirk5w7]

I think it's just because we can't seem to get my meds right recently, and it's taking so long.

Good luck to you!

[Kirk5w7 in reply to B_S_A]

You have the added problem of meds, I don't take anything, the rehab consultant reckoned the side-effects weren't worth any benefit I might get so I should cope as long as I can, a mixed blessing I suppose, I'm hopeful it will fall into place for you, best wishes xx

[iforget]

Acceptance...ah that magical mythical and most elusive beast I have lost count of the number of times I was convinced I had come to accept my situation...only to have the full force of the loss smack me in the face when I least expected it.

In some respects I suppose I might be considered lucky...my memory loss protects me to a degree and for the most part I drift through life in blissful ignorance...but every now and again the brutal reality hits and rips the heart out of me...so when I read these kinds of posts I feel the collective pain. I wish there was an answer.....but until then, we have virtual hugs... and our sheer grit.

Be gentle with yourself and take care

[bikerlifestyle in reply to iforget]

you have a good point there our memory issues and blissful ignorance are actually helpful at times too, thats a good point indeed

[B_S_A in reply to iforget]

I'm alright with it today. I know it won't ever truly "end", but that's the same with everyone and in every situation. People get sad over all sorts of stuff, so it's the same principle here. Thanks to all!

[Richdp]

I feel exactly the same. It's 530 in the morning and I've been awake for about 2 hours already with my mind going over and over. This is a regular occurrence for me when waking in the night. I too, am a little tired of hearing "your lucky to be where you are" Some might call it lucky. The thing is, the people closest to me were there when I was at my worst and at death's door, the weeks and weeks in hospital unaware of what was going on. Of course they're see me as lucky to come this far. I know people on here can relate in a big way but I wish those closest to me (ie. my wife, who's on the other end of my moaning) could understand. I don't, and can't expect people to always understand me, but maybe how I am now is the cause of my frustrations and constant moaning about life. I'm due to see a psychiatrist with my wife next month. He may give some medication to curb these temper outbursts and moaning. Has anybody had any experience with these kind of meds?

Anyway, it's my darling daughter who gets me through the dark times. Most of the time I can control my mood due to her being around. I make a concious effort to lift myself, although as time has gone on, its become more natural, for her sake.

Keep on keeping strong