Hi everyone it has been about seven years since I survived my AVM and I realized that my usual group of friends isn’t there anymore or that they are not the same as I remembered them. I’ve pretty much gotten rid of most of my close friends, particularly from high school, they are not thre nicest people to hang around with but I still keep close contact with a few of them. Anyway, I’d like to expand my social circle and replace the friends that I got rid of. Any of you here would like to get acquainted? My name is Samuel from Bali, Indonesia. I lived in Perth, Australia for about 5 years to complete my studies before finally moving back to Bali to recover after my AVM ruptured while studying. What about you? what’s your story?
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Samuel, I found out a lot about people when I “bumped my head” as I refer to my bleed. It became clear who were friends, and who were people I knew. I have worked in many areas, and do know a lot of folks but am at the point in my life where I avoid negative people and those that drain the life/energy out of me. A couple of those are in laws, so to maintain family peace I put a happy face on for the required times, this Monday will be one of them! We will have about 18 for dinner, and a couple of those present never see the glass being half full.
I am fortunate, having a few close friends, and family I am close with but have developed the skill to be completely at peace being by myself. Some of my most peaceful times are getting on my bike and riding, it might be some to do with my age! Be yourself and your true friends will be there. Take Care, John
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Thanks for replying. I have to say that I’m not that too worried about being alone. I’ve gotten used to it even before my accident but I have to say that at times I am scared that I might end up dying alone. The only one who is close to me is my mother she is a saint because she is the one who took care of me after I survived my ordeal whereas my father doesn’t do anything except pay for my medical bills and yet he treats me and my mum like cattle. He thinks because he is the breadwinner and pays my medical bills he can look down on us and disregard anything that we have to say or need. He is part of the reason why I am in this AVM mess, this isn’t to say he caused it but he did play a role by forcing me to go his way while i was studying in university, which I so detested as I wanted to attend a practical college because it is cheaper and in line with my learning needs but i chose the university path because my dad forced me, which end up costing me a lot of time and money and now my health as the excess work from university and my job contributed to my depression that led to my AVM rupturing from sheer stress. now I have to undergo daily therapies which are tiring and costly and to make it worse most of my friends have moved on with their lives, they have jobs and stable incomes while I have no job and no stable income. how do you deal with this? i am turning 29 next year, almost thirty and I feel like a failure.
Hey Sam,
My name is Merl, I’m a member of the Modsupport Team here on Ben’s Friends.
Firstly, I want to say, You can only be responsible for your own choices. None of us are here, in this position, by choice. I certainly didn’t wake up one morning and wish me a brain injury, but here I am. You should not be feeling like a failure for something outside of your control.
BUT
That feeling of a loss of control, ohhh, yeaaa. That can be very real and it hit me hard. I’d just finished my studies, got my piece of paper (qualification) and had a role I loved. Found myself a long term girlfriend and then BANG and it was all crashing down around me. I had plans, I had a life and poof. Well, that’s what I thought anyway.
Don’t get me wrong here, my life did change. But it didn’t all go ‘POOF’ as I thought it would. That “girlfriend” has turned into a “wife” (She was crazy enough to say ‘YES’ 
). Rather than focusing on a long term plan/direction, I did some shorter courses to expand my knowledge base but still within my field of study and within my ‘new’ abilities. I did eventually get myself back into my role. I tried to ignore those changes and forced myself to continue at the same pace, something went ‘POP’ and I ended up back on the neurosurgeon’s table. Me, I’m a bit of a control freak, I am in control of me, but I had no control over any of it all. What little control I did have, I had to hand all of that control over to the medicos. And, for me, that was difficult. The first surgery was supposed to ‘Fix’ the issue. It didn’t and I’ve required a few further neurosurgeries to manage it all.
The recovery took quite some time and was by no means I straight line of progression.
After the last episode, I’ve been unable to return to my former profession, which has been a very bitter pill to swallow. I never wanted a accept ‘THIS’, but the reality is I have no choice. Fighting against it is like fighting with myself. ‘THIS’ is where I’m at. I had to learn my limits, then learn to manage within those specific limits. Rest when my body said ‘Rest’ and do what was best for me.
I’m lucky enough to have a very supportive wife, how she puts up with me sometimes I’ll never know. I’m sure I would have divorced ‘me’ years ago 
but all of my former friends have moved on, got on with their lives, as they should, but it has been isolating for me.
How do I deal with it…? Just for today. I manage for ‘today’. For me my symptoms fluctuate BADLY, some days it’s all minimal, some days it’s overwhelming. And every day is different. I can’t say 'At 3pm I’ll be symptomatic…" it just hits me, sometimes I’ll get a pre-warning, sometimes it can be like a kick to the back of the head, like a bolt from the blue, BANG.
How do I manage…? That depends. I have a few ‘Tools’ I use, from medications to alternative therapies to a dark silent room/isolation. For me, it all depends on my needs at that time.
Just know you are not alone in all of this, we’ve been there too.
Merl from the Modsupport Team
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Thank you for the insights. I know very well that the old me died on the operating table after my AVM ruptured and that I will have to learn with the deficits I have. i was depressed at first not because of the disabilities I acquired from the bleeding but because I had to start my life all over again especially when before the rupture, I was an absolute mess with my life. I had the path that was forced upon me by my father. I hated my university life because it was not what I wanted to do after graduating from business college. I wanted to stay behind at my college and start practicing my human resources skills at the college as an unpaid intern. Still, there was no open HR position to allow me to work and learn and I was forced to enroll in an expensive university as demanded by my father. I forced myself to enjoy the experience but failed miserably because it was not what I planned and I became depressed.
My AVM finally ruptured near the last semester when I nearly graduated. Now I’m stuck at home with my parents and don’t have a stable income to support myself other than my father financing my recovery but I hate the thought of it as he is inconsiderate of me and my limits, he believes because that I am his son and he pays for my recovery, he has the right to treat me like a piece of property. I realize that he is also part of the reason why I am in this AVM mess in the first place. If he had not forced me to go to university I wouldn’t be so depressed and I wouldn’t have gone running that day to relieve my depression, which caused my AVM to rupture. I promised myself that if I am able to be fully abled again like I was before my rupture and I can make my own money I would like to ditch my father for good. i feel helpless at times. most of my friends have jobs and moving on with their lives while I am still stuck at home with my parents. now I am just focusing on anything that sparks my interest or would help me get some financial stability.
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Hey Sam,
Dealing with parental expectations is never easy. I haven’t lived under the family roof for almost 40yrs (I was sent to boarding school at 12) and still today that expectation is there. I don’t even live in the same country as them. My family are aware of my surgeries and the issues that have arisen as a result, but their expectations have not lessened. I’m presently steering down the barrel of my 7th neurosurgery and they tell me "…listen to your Doctors…'. That’s what got me in this position in the first place, listening to dr’s. Grrrrrrrr. For me, I had to process it all for me, not them and that took time. I say
‘…that took time…’ because it was not a straight line of progression. Some days I’m physically unable, some days I’m mentally unable and I need to self-adjust for those up’s and down’s, not for them nor anybody else, but for ME!!!.
Here’s my advice-:
Make a plan. Start small and establish a goal. Something to aim for, this can help to give you a focus.
Work out what steps you need to take to achieve your goal. How will you manage?
These management ideas I often call ‘What if’s…?’ What if ‘x’ happens? what if ‘y’ happens? Have some plan of how you can manage ‘You’ the best way for yourself.
DO NOT be pushing your limits too far or you can end up pushing yourself backwards.
Listen to your body it will tell you when you’ve reached your limit.
Make a Plan How will I manage? What techniques can I use to better cope? Learn what works best for you.
‘TRY’ not to compare to your friends or others. You’ve had a rupture, that is technically a brain injury. There is nothing that compares to a brain injury. No 2 brain injuries are the same, so trying to compare is impossible. I say ‘TRY’ because I know it’s difficult not to compare, especially when others may remind us regularly.
Others are ALWAYS going to have an opinion, ALWAYS, and often family are the worst. But they are not the ones living it, you are. This is why I say ‘you have to manage you’. They don’t know your symptoms and although many people think they know all about it, they don’t. Unless they have personally been ‘here’, in this position, they have no clue of the realities. I have had lots of "…my friend ‘John’ had brain surgery and he’s OK…’ type scenarios. It’s as if they are saying “So, what’s your problem?” and I’ve offered them my headaches/symptoms, just for a day, one single day to see how they would manage it all, but I haven’t had any willing takers. As I say “None of us are here, in this position, by choice”. I’ve had people tell me “You don’t look very good…” I often just say “Yea, got a bit of a headache…” trying to minimise it all. What I have is a man with a sledgehammer trying to smash his way through my forehead, my right eye closes up and my face droops. “You say ‘I don’t look very good’ ??? You want to have a look from this side…” What they can see is but a micron of what I’m trying to manage. They have no clue just how bad ‘BAD’ can be. I’ve tried to inform them but often their eyes glaze over, like I’m exaggerating it all. I don’t have to exaggerate. It’s all too real.
But start with a plan.
Hope it helps
Merl from the Modsupport Team
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Hey Samuel. Pleased to ‘meet’ you. My name is Lulu and I’m in the UK. Sounds as if you’ve had a journey, particularly with you friendship group. I feel bad for you. Its never nice when you find out that friends aren’t who you thought they were. I’ve had this experience too, but not cos of my medical situation. It just seems that some people have less moral fibre and aren’t as committed to maintaining relationships. It hurts a bit when people just drift away or don’t bother returning your calls. But I guess its just one of those things. Their loss and I try not to take it personally. I think my own story is probably quite different to yours. I’ve known about my AVM since I was 14 and I needed a brain scan for something else. At that time I (perhaps naively) didn’t know it could cause any further problems. I was about 27 when I found that out!! My AVM is unruptured and doesn’t (currently) cause any of the scary defects others report. So I haven’t had any treatment - although I do have shunt for other reasons. I’m in the ‘if it ain’t broke don’t try to fix it’ camp. I might not be much help as I can see you’ve had a rupture. But wanted to say Hi all the same.
Best wishes
Lulu
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Hi Sam!
I’m Mia from Sweden. I also lost a lot of friends during my “AVM journey”. Also, because I somehow felt ashamed that something was wrong with me, which is crazy. I just stopped communicating with them and they didn’t even check in with me how it was so I didn’t bother to keep the connection.
I lived in Bali for half a year recently, to finish my university degree in international business! It was sooo nice and I miss it so much. Sweden is very cold, dark and snowy right now.
I also feel so far behind all my other friends but at the same time I’ve travelled and lived my life fully during my late 20’s. I had to leave my job due to the seizures I got because, just like you, the stress impacted me so much. Now, I’m 30 and almost all of my friends have a stable economy, children, education and good jobs.
I just started my own company and I don’t know if I’ll be able to manage it… I already feel so much pressure and don’t know if I’ll be able to manage it.
I live with my boyfriend and a dog which brings me a lot of joy.
But during these dark months I cant help but being so down and depression creeps in on me.
Don’t loose hope though! I’m sure you’ll find something that fuels your passion! We’ve a big opportunity to work digitally these days.
What did you study and what are you working with right now? And what are your hobbies?
Have a great day, sending virtual hugs!
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Hi Mia, hu mår du? pratar du Svenska? Var kommer du från på Sverige? I know some basic words and phrases in Svenska but it’s still basic and I sometimes confuse it with my German and Norwegian. I have a close friend from Stockholm that i used to talk to before my AVM ruptured. She taught me some Svenska but ever since she moved back to Sweden, she became a bit distant. I still talk to her but she has been ghosting me lately. Ah cool, you lived in Bali you say, whereabouts did you stay? perhaps you can let me know when you’re coming here again. My family has some guest houses and villas that they rent out to people. You can stay in them if you like, they are mostly in the tourist areas like Ubud, Nusa Dua and Sanur. How did you find Bali overall was it good? did you do a student exchange in Bali to finish your studies? if so in which university in Bali did you do it?
Back in Australia, I Studied Human Resources management and already got an accredited diploma to start working but the job market there wasn’t that good as no HR positions were available and went to university instead to pursue a bachelor of commerce thinking that it might better my chances of employment but i ended up wasting a lot of money for the fees as Australian universities are expensive and to top it all off my AVM ruptured while i was still studying so i didn’t finish my bachelors and i’m still paying for my recovery ever since.
As for what i’m doing right now after the accident, i just mostly trade the financial markets like stocks, forex and crypto. I’m making money with them but it’s not completely sustainable since I’m still a beginner. i have some money left from my job in Australia as a lab assistant and a sample preparer at a mining lab in Western Australia but even that is not enough even when i draw out my superannuation for my pension to be used as an emergency fund. Right now i’m mostly focusing on my recovery. Feel free to reach out to me if you are ever in Bali again
Hi Sam, Sorry about your AVM/depression issues, they went hand-in-hand with me for decades. The feeling of powerlessness is core to your situation, and a lot of us here.
That doesn’t mean you should adopt the role of victim. Don’t do that!
It sounds like your dad may be bossy but it may be he is scared/confused (my dad was.) It’s up to you to learn to set boundaries in all relationships. (There’s books and lectures.)
Lastly, you are not a failure. I’m not just saying that to be nice/positive-- you really are not a failure. You’ve gained a lot of wisdom and you are resilient and you are helping others (like me.) Best wishes, Greg
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Hi Sam, I am also partially paralyzed on my left side. Are you having any luck with physical therapy? Bali seems nice… I’m in love with Penang Malaysia where I was stationed for work… P.S. Bullish on Brainchip Holdings
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hey yea i ve made some progress with physiotherapy. i can move my left side but it’s still a bit weak particularly with my hand’s grip strength. What about you? Have you had any breakthroughs in recovery?
I’m technically walking with a special type of walker called a platform step walker
Oh, cool. It’s good to hear that you are making progress. I had to use an ankle-foot orthosis to walk before, but now I am walking without any device for assistance after doing neurophysics therapy in Perth, Western Australia. I am still having difficulty moving or bending my wrist and knees and my fingers only open in a certain way, it still needs improvement but I can already grab things but it’s not perfect and needs further improvement, what about you? are your fingers back to normal? if you manage to have them back to normal, give me some tips on the training that you do. thanks
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My left hand doesn’t really work but as I progress I will keep you appraised.
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