How did I get here?

You ever ask yourself that?

I mean there I was, 20 years old at university just with some friends and BOOM. The chances of having an AVM in the brain is so slim (something like <1%) and the chances of it bursting when your 20 are pretty small as well.

Then epilepsy, my god, is just horrible. Every 5 seconds I have little feelings that make me think I might have a seizure, and for a long time I thought they meant my AVM was about to burst again.

My vision to the right still hasn't returned, and it's just so difficult to watch my friends fly by into careers and the like.

These are pointless things to feel; they're counter productive and only hinder my progress, but it just hurts so damn much some times.

What I would give to go back.

9 Replies

  • Wouldnt we all love to go back.

    But then as the years pass and you make new friends you realise that if it hadnt have happened you wouldnt know them.

    Unfortunatley we spend to much time and energy trying to get back that we can miss what and who is around us.

    I say this from bitter experience having wasted years trying to "recover" back to what I was before.

    I have changed ( not always for the better) and will never be the person I was or thought I was going to be.

    It is not easy to move on but its something we must do. If you spend to much time looking backwards you just stumble into a future you may have little control over.

    Everyone changes over time , its just some of us change rather quickly and its that initial adaption to this change thats the hard bit. After that things may not be easy but they should be less hard.

    I hope I have expressed this correctly and it is of some use to you.

  • I think life has dealt you some unlucky cards, and it is perfectly normal to feel angry/fed up.

    I don't think any one would not.

    and equally while some of us can find silver linings, most if not all of us given the choice, given a button to be V1 again would.

    differs oddly to things you grow up with, be that like myself dyslexic or what ever where I couldn't chose but the TBI god yes and mine is minor.

  • For many different reasons I ask myself that question Ben. But dwelling on stuff we can't change is, as you've said, counter productive and what's more it reinforces that feeling of regret which can take over if we allow it to.

    You're doing fine. Maybe you've set your goals/standards too high when you already have abilities and talents that can take you much, much further in terms of achievement and quality of life.

    All the same, I feel for you. xx

  • Hi Ben

    If you ever find that button please let me know!

    It's hard to accept but you need to look at the success, the piano piece you posted was amazing, so talent will prevail.

    I hate the new me, especially as it still seems to be developing and as per Paxo not for the better :-(

    I try so hard not to look back but the people around me are great and accept who I am now and not the person I was.

    My sense of humour helps at times too.

    You are not alone it's what this forum is for.


  • Wow a very familiar story, I have an AVM lovely things arnt they?

    My lovely hawmorrhage happend when I was 21 in the middle of my uni course, I was in hospital 6 months had to take a year off uni :( until I coyld walk again etc..... My vision iss afficted in lower left quadrent (field vision)

    i finished my degrees did quite well considering everything but now cant get a job in what I trained in because of physical lumitations, and I know what you mean its like tour lifes on hold why your feiends all progress in their careers etc and your left thinking what about me,

    Have you had treatment for your AVM?

    Would your really go back and change things if you could?


  • Hi Ben Life is a b......r at times, what can I say that's not already been said

    BUT what's that saying......Out of adversity comes greatness

    I read this once.......

    "We don't develop courage by being happy every day. We develop it by surviving difficult times and challenging everyday "

    Also, Ben, have you watched the Stephen Hawking film.....The Theory of Everything....

    I watched and admired this man and the adversity he conquered, it's definitely worth a watch.

    Take care young man

    Jo 😃

  • you can only move forward,not hold back,reacovering from B,I is a big thing! s we all know this kind of stuff comes up allot in here,Ok so you arenot quite who were,celabrate who are you now,even iam not who i was before hubby was ill,its powerfull embrace it x

  • Hi there. Yes I can totally identify with you and the other comments here. I too have an AVM. You are right, this is a very rare condition. Mine is an AVM of the Cerebellum and is unruptured. But I have known about it since I was 14 and it caused recurrent Hydrocephalus for which I have a VP Shunt. Back then (late 80s) I thought and felt like I was the only one with a BI. Stupid I know, but online forums didn't exist then and I was not able to get in touch with anyone else with the same sort of issues. I often thought 'why me?' and upset myself by doing so. There is no rhyme or reason, its just how it is. If you can learn to accept that it gets easier. I'm not saying it isn't still difficult at times and that there is no pain. But at least we all have each other and can share our stories and support. Best of luck.


  • You can't go back. Go forward and prosper whilst overcoming the adversity of your malady.

    Give thanks you are able to understand what has happened to you and that you can still think constructively.

    For those of of us who are lucky in this sense there's loads of poor sods who can't.

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