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AVM Survivors Network

Humiliations, Mockery, Double Standards, Strained Relationships, Depression :(


#1

Dear All....as i had previously said I underwent my AVM right frontal surgery 13 yrs ago in 2001 at the young age of 15yrs & was in Coma & suffered 98% memory damage. A 15yr old kid who faced this trauma so early in his life would have faced lots of challenges to be on par with his peers be it in academics, social exposure etc.

Since mine is right frontal area in the brain, it had a devastating impact on my personality. I have googled & also read lots of detailed information about various aspects of AVM from authentic websites.

My primary damage was memory power - What u say in 25 secs reaches my brain & gets converted & stored as a memory only after 50 secs. In short it takes the double the time. Which means when i am trying to save the audio what i hear in the first sentence, I am parallely multi-tasking hearing the audio from the second sentence. This causes mix-up & confusion. When this confused mixed up audio is registered confidently by the brain as though it presumes it heard it correctly, it results in positive evaluation of one self that we are doing things right, but the reality is we are registering it wrongly & the peer groups are mocking at us & laughing at us using groupism & social politics. This causes low self-esteem & loss of self-confidence. Also development of hatred, depression, accumulating anger etc etc which directly has an imapact on your daily habits of how peacefully u sleep, to how regularly u eat, to how much nutrients gets supplied to your brain cells, breathing pattern etc etc.

I am still struggling upto date as a 28 yr old man. In India i belong to a urban middle class society, which has a judgemental side on how others must earn, spend their money, when they should get married, have kids, how much part of their income must be spent on leisures & holidaying etc etc. Else they would use groupism & social politics & enter into arguments & mockery on humiliating stuffs like if u r not married till date then u r GAY, If u r not spending a significant money on socialising & liesures then u r a Miser & conjuse who doesn't spend money etc etc.

THEY DO NOT bother about ur memory damage & u being unemployed & have to survive with your little savings till u find a suitable job within your 100s of practical constraints.

You are not allowed to react swiftly to such provocations & humiliations because out of a group of 7-8 people be it in office or social life, the remaining 7 people tend to pass judgement about you, that you are very closed person & cant take it as a joke. They use groupism & make u JOKER & laugh & ridicule you.

The reality is COMMON MAN does not know what is the impact of an AVM surgery, how it damages the brain cells & affects the personality changes, daily habits, lesser social exposure, peer group pressure etc etc.

I am now 4 months old in the Rehab & have a gem of a person as my doctor. He has spent hours together listening to all my venting & contributed to both cognitive memory rehab + personality changes.

But the feedback I still get from the doctor is THE WORLD will remain cruel. You need to choose whether u can accept humiliations & keep relationships or instead argue with common man satisfy your ego & lose relationships.

I fully agree that though I am not the one at fault I must choose relationships over ego, but I have still not been able to keep that devil inside my head to shut up. The humiliations & pain tend to accumulate over years & affect our physical health, mental health, food habits, breathing pattern etc etc.

I am looking for suggestions on how I can fine-tune myself to live in such a world. I am not angry but just in some pain. I actually have stopped being wild venting at home. Now over the last 6 months its only productive discussions & pain venting with family & well wishers.

I hope I have the right to feel pain & let out my depression & tears.

Thanks,
Santhosh
Bangalore India.


#2

I feel your pain my man. I had avm removed 5 years ago. Front right. I made full recovery so I thought. My de gave me great advice. This is a condition that is mental as well as physical. It’s something most won’t understand. People will always judge you especially after something like this. It is life changing. All you can do is be yourself. Be a good person do good things and see it as a blessing that this has occurred to you. You have the ability to see people and the world in a different way. You need to develop a sense of understanding that most people will never understand you fully. So you need to be at peace with yourself first. Everyone else will come later.

Trust me I know and it frustrates me still. But I am learning to develop this the best I can. I’m here if you ever need to talk. Email me anytime bro. I’m in another country but we are all connected through this somehow. Use this email ■■■■■■■■■■■■■■■■■■■■■■. Take care.

Raf


#3

Thanks Raf...i agree common can never understand something which is not common. We just need to have faith in god & prioritise getting peace with ourselves. I had many discussions with my DAD & he too used to say what kind of double standards & humiliations he has faced in his life time. God is the only one who knows why he puts us in these situations, but similarly God is the only one who watches the cycle of Karma. All those who faced pain will be rewarded & all those who caused pain will be punished. We will have to stop questioning larger than life scenarios & leave those topics to God. I know it is philosophical.

Thank you for offering your email ID & time for me to vent.

Take Care.
Regards,
Santhosh


#4

I also underwent treatment in my teen years (Proton Beam) and surgery on my 18th birthday to remove the mass (right frontal). Even though I and my therapists believed we could "re-wire" my brain to regain the right/let side coordination which left me, numbers of neurologists were always in the wings telling us we were wasting our time. It was crushing. I am now 56 years old, the mother of a beautiful 23 year old girl and pursuing a life with the voices of the naysayers nothing but white noise. It is difficult to do, but it makes you strong and in your strength those who don't believe will begin to wonder. Whether you are religious or not, keep a voice in your head that always has positive thoughts. Pray, focus on those who are worse off than you are. Forgive the ignorant. (Imagine what they live with each day!) Eat good foods that will feed your brain cells and give you oxygen rich blood, do as much exercise as possible, laugh and read as many books as you can (even though reading can be difficult), do puzzles, play with children and play their games. Look for brain games online (Lumosity dot com is a great resource). Whatever you do, do not give in to negativity. Work with those who are less fortunate than you are and be humble. You have every right to feel pain in your heart - you've lost your old self, but give the "new" you a chance to become a whole person. Those who knew you as a young man may be grieving the loss of that boy, as well. Be tolerant. I wish you peace with the changes you face every day. You aren't alone. Be well. ~Maria


#5

Hi Santhosh!

I wish you lived close to me so that I could show you that not everyone behaves this way. Yes the world can be cruel and you have every right to feel pain and to express our pain and your tears. My daughter experience similar situations with her AVM recovery. Hers is in her spine and she could not walk for a long period and was in a wheel chair and then had crutches. She still can not run (she is 15 now and was 10 when this all began). She was made fun of and laughed at in Gym class and very hurtful and cruel things were said to her and about her. It has been rough...the one silver lining is her best friend...she stuck through this with her, she did not go to her school, she lives downs the street and she understood what my daughter was going through because she saw it every day in her own home...her brother had very rare form of cancer. He has since passed away (at 16) and they have remaind close. She also got a lot from being part of this forum, knowing that there are others that have and are experiencing the same issues if not worse help her stay strong. It sound like your doctor is that one person that gets it and understands what you are going through. My daughter never faught back against those that bullied her, that was her decision and I think it was a good one. I wouldn't waste my time trying to educate people that should know better. I think it is better to surround yourself with those who support you and are kind and understanding. Also, this is the place for you to vent...vent all you want, no one here will judge, make fun of you or hurt you.

I hope this helped you in some small way.

Stay strong!
Margarita


#6

I am so sorry that I do not have much time to reply to your questions: You must find peace within and learn to love yourself and be content with yourself first. I will always go with God first. If I did not have God in my heart and if I did not know that He loved me with all of HIS heart I could not make it from day to day. You are in India and you might possibly be of a different religion. For me, there is only one true God, and he gives me peace and tranquility and the ability to face every day with my AVM and all of the fears and problems that it causes.
On the subject of your friends and peers, it sounds like you need to find new ones! If these people are not kind and understanding and loving to you, dump them! Get rid of them! This world is full of people who are wonderful and will open their arms and their hearts for you so get rid of those losers!
I must go and I apologize if I have offended anyone but I’m only speaking from my heart and how I feel about things. I think each one of us should be able to speak freely and openly in a calm manner with no intention of hurting anyone else.
Much love to everyone and many, many prayers for everyone,
Beverly
I also apologize for any grammatical errors for I was using the microphone to dictate into and I did not proofread! :slight_smile:


#7

Thank you Mrs. Maria....it feels nice to hear those words from elders.

I agree, the best way is to ignore negativity, though easier said than done. I have now inculcated habits such as proper sleep, proper healthy diet & keeping mind always busy instead of idle mind.

I have successfully now completed 4 yrs of social service in a NGO which is not an employment but an escape route for me to keep myself occupied. I have met people with so much poverty & pain & been an active volunteer for 4yrs now. It has helped to release any negativity.

I recently also started a new hobby of photography & realised we engross ourselves & invest so much time travelling when we are hungry to click the most beautiful, innovative pictures.

Thanks for sharing your views.

Regards,
Santhosh


#8

Hi Margarita..thanks for your support.

I agree that not all humans behave undesirably. there are kind people as well.

But most of the times when we are engrossed in our busy city life & rat race to achieve, we tend to meet atleast 75% of the people who are trying to bring u down as it is a part of the rat race. there are remaining 25% who are kind but incidentally it may happen they are not available at the right time & place to support your needs. It is at those times pain n sadness accumulates. but I have learnt that it is better to accumulate those sadness then find some one who is even more in pain & be of help to them. That way it makes us feel we are useful to someone.

I am an active volunteer in a social service organisation for 4yrs now & also have developed the hobby of photography recently.

Thanks for your inputs.

Regards,
Santhosh


#9

Thank you Beverly for sharing your views.

True...I am in the process of dumping those people & finding new friends & peers to suit my circumstances & should hopefully find a solution soon.

Thanks,
Santhosh


#10

Hi Santhosh,

I believe the best way to deal with those people goes through truly loving yourself and seeing yourself as one new whole. Maria has a very right point, actually many. In fact, it is so true with everyone, there is no need to go through a traumatic experience for it. What you are going through is increasing the impact.

You are not alone in going through difficult phases. I have realized that, in this world, everyone in one way or another, sooner or later experiences some kind of difficulty more or less. You are at the prime position to make observations on people's behaviors and think about them to understand who is what actually.

I do very much hope that, you turn around what has happened to you into a story of success, by excelling on the areas where you think you can improve and of course you want.

I myself have found an amazing soothing effect in Kundalini yoga. It balances body, mind and soul so nicely. Please give a try whenever you feel you need to get re-energized.

Take care,
Zeynep


#11

Santosh, I have never added a reply to contributors on this site ..... until now! Your posting tore at my heart as you are obviously such a good, good person screaming out to adjust to this terrible thing that has happened to you and also dealing with reaction of people outside who know absolutely nothing of what you are having to adjust to. My stepson has a huge (12cm) AVM and it is just awful watching his life turn on its head, so I do know just a little of how you have been affected.

I do hope that you learn to recognise that you ARE a good person and have a lot to offer, in time, but this can only be done by small steps. I am sure that you now have lots of supporters who look forward to hearing your progress.

Good luck to you and all the other AVM sufferers in everything you do. King Regards. RHODAV


#12

I too had surgery at the age of 15 years-old.
Like you, I received a similar response from my family and friends. To ease my frustration and anger I began to meditate several times a day. I found that including positive affirmation into my meditation was very helpful in dealing with the negative feelings that arose from uncomfortable social interactions.

I am now a happy, healthy and active person with a husband and a son, and many friends.

I have an idea for you to consider -- maybe visiting, or joining an ashram could help you receive caring interactions with people of less judgmental character.

I have a friend who did that after suffering an accident that left him paralyzed from the waist down. He had been accepted to Stanford University on a soccer scholarship and he thought that because he no longer could play soccer his academic life was over too; so, he did not go to college. Instead he joined an ashram,
The people of the ashram helped him to psychologically and emotionally recover from the trauma of losing his ability to walk. He also gained strength from a spiritual life that he never knew before his accident. He is now a very centered and positive person. And now, 28 years after his accident, my friend is a student at Stanford University studying to become a lawyer. He has many friends and is welcome everywhere he goes.

I hope our stories help you.

Cheers,
Kristy


#13

You inspire me reading this! My AVM was in my right frontal lobe as well and mine blew up in 2007! I go through pretty much the exact same things only as an older person. I don't know that I could have been as strong as you are at your age. I have a 30 year old son and he is the reason I have survived with such flying colors! I feel very blessed to be here and try to teach other people healthy or not to not sweat the small stuff! I feel we are here for a reason after what we have been through as I have read on these pages, so let that reason be to inspire each other and everyone else! So my suggestion to you in this world is to keep inspiring others as you did me!

I am on facebook as well (Gina Kay Secula Gebhardt) and that has really been my only means of speaking my mind when I can get it to work! Ha! and trying to inspire as best I can. I thought I shouldn't even try at first and maybe the people I happen know won't be inspired by anything I have to say, but then sometimes I see someone that I did reach and I know not to quit trying.

You do have the right to feel pain, depression, tears, and have a good pity party...just don't decide to move into that place, get up, put your boots on, and INSPIRE! You can always send me a note, I always need inspiring!


#14

i just want to say, i am So sorry for your pain...brain surgery...the invisible disabilty...santhosh, please try to hang in...join every web site you can..ask for help and support...i will try to be here for you...and i know, most people don't want to hear about what we're going through; they don't get it, and in their minds , we don't look sick..God bless, marylee


#15

#16

Dear all - Zeynep, Rhodov, Kristy, Gina, Marylee, Robert !!!

Thank you for your kind inputs.

Summary:-
I have started to love myself & self-engrossed & put on my head phones & music and take the city bus transport & go loafing around the entire city whenever i find time. I dont want to be idle at home & complain about the peers who choose to avoid me to socialise.
I have successfully now completed 4 yrs of social service in a NGO which is not an employment but an escape route for me to keep myself occupied in social service.
I recently also started a new hobby of photography & realised we engross ourselves & invest so much time travelling when we are hungry to click the most beautiful, innovative pictures.
90% of my posts on my Facebook profile are related to famous funny quotes & jokes which makes the people smile & forget their stress from daily routine.
As I told I am now 3 months old in the rehab & still have 2 more months of hard work to reach the finish line.
My awesome doctor has taught me a new relaxing exercise whenever emotions run haywire. Just take a deep breath inhale & simultaneously bloat your belly with that air, now hold on and stay in that position for 10 seconds without any anxiety and then exhale & contract your belly inwards. When u repeat this exercise for atleast 2 mins all anxiety & discomfort disappears & your breathing pattern improves the oxygen supply to your brain. You will be in a more stable position to think clearly.
I also learnt meditiation long time ago but didnt put it into practise. There is a technique they teach where you need to sit down in that same common posture for meditation & then imagine a sunrise bright ray of light is happening at the centre of your forehead in between your eyes. The more slow & time consuming & smooth the sunrise, the more better will be the benefit u derive from this relaxation exercise.
I also read on the internet that using a treadmill to walk swiftly for 15 mins will make u let out any negative energy.

So I am clearly making consious efforts to keep myself moving ahead than stagnating. I am not restless or anxious about being unemployed because I have 2 more months of rehab & then hopeful God has something in store for me.

May i request more inputs & your point of view on the following:
I am not upset that I am unable to run the rat race. Infact I have quit the rat race & content with myself over the last 6 months. But my area of help needed is, as you people rightly highlighted & noticed my photo clearly tells that common man cannot recognise the trauma I have been through & also presently going through because I look so no normal & speak so normally, as it does not involve multi-tasking as much as in office atmosphere. Also people can only see as much as what they have experienced in their life. AVM is not so common for people to understand it. So no complaints.
THE CRUX of my problem is - As a 15 yr old boy who went thru these phases & was constantly humiliated & ridiculed - the sense of satisfaction & self-confidence I define for myself is - when I am able to actively engage in a conversation with a common man who has not been through an AVM. I mean be it in social events, office atmosphere or an active peer group, we tend to discuss so many topics about what are the procedural aspects of how to apply for a car loan, to what are the procedures to apply a visa, to what kind of constraints they face in money management & credit management, to what is a smarter way of reducing costs, to topics about leisures on what is the procedural aspects on how to visit a holiday destination, to the challenges encountered in that trip, to topics about current affairs & news bites.
Did u notice none of those questions are philosophical in nature but involves procedures about daily routine life topics.
In my case my gap in employment, gap in social exposure, gap in common habits, made my routine life very different from common man who is running the rat race. As i previously highlighted, my sense of happiness is when i am able to actively engage in a conversation about these topics with a common man. I feel happy when I am of some use to people, a reference point or source of information because I am sure you would acknowledge like how a person who does not have a hand will feel so happy when God gives him a hand, similarly for a person like me since 15yrs age I suffered ignorance due to lack of common habits with peers, that ignorance created a lot of pain in me.
I am now starting from scratch & making new set of friends & without hesitation trying to ask the most stupid questions & learn all those topics I am ignorant about but it is easier said than done. Its not easy to compensate for a natural life exposure which was lost for 13 yrs during the age of 15-28 yrs. But this time I am not giving up. Let it take 1 year 2 year 3 years..thats fine may be 5 years down the line I may be in a better position be it in career, social exposure, friends circle, or may be even marriage. I smiled to know my own gem of a doctor was destined to get married only when he was 33 yrs old. So I am still 28 yrs old but I am one of the twin brothers who is married happily for 3.5 yrs since Nov 2010. I am now focusing on ONE DAY AT A TIME.

Thank you all so much. I won't let you down this time.

We will reach the finish line.

cheers
Santhosh
Bangalore, India.


#17

Hi Santhosh,

There are finish lines for our goals, yes, but what is constant in life is the change. The only person who knows what is happening in your mind is you, yourself. And this is true for the rest as well. My humble view is please focus on your own strengths, rather than focusing on the other people's abilities or your weaknesses and set yourself clear, specific and achievable goals where you can evaluate your progress by time and effort.

In your example, managing multi-tasking or procedural activities requires natural abilities as well. There are people who have strengths to administer things, but then there are people who are good at design, or, good at reporting, or, good at facilitating, but not good at administrative staff so much. For doing what we like, being employed and satisfied, we need to find out our strengths and put the focus there to develop further. Weaknesses will also improve in the process, on the way, for sure.

I know it is much easier to say than do. But as you explain, you are a survivor, you are a fighter. You have been going through all and became stronger every single day. Every single day since age of 15 is your evidence to grow the confidence, taking yourself on day 1 as your reference point.

I have found Pekka very inspiring. Please take a look. He did not have AVM, but a severe TBI after a ski accident. Please see that, he is setting himself goals (which requires huge amount of work actually for every single day) and once he achieves, sets a new one, raising up the bar. He was in wheel chair, aiming to walk, once he walked, he wanted to run and now he runs and wants to run a marathon.
http://www.teamfightback.com/backfighters/pekkahyysalo/


#18

Hi santosh, ofcourse you are entitled to vent and let anger out. Bette out than in right? But do not let it consume you. I too had a craniotomy on my right temporal lobe, have left hemiparesis. I did have episodes of depression and its beenonly 6months from my bleed. I also keep myself busy to turn my attention awaY from the negative things. I have an online writing job and takes care of two kids 6 and a 4. Its hard but i only think that things will only get bette from now. Focus on the positive and pray all the time. God ismy strength.my family gives me hope at all times. Friends who have abandonedme are just there living their "normal"lives. I dont take it against them. Maybe i will meet more people worthy of my attention in the future, likeyou!. Take care santosh.



Vanessa

Manila, philippines


#19

thank you Medita for sharing your views....i will consider them as I am in that phase of making a decision related to my career plan...i think parallely all other aspects of life will fall in place soon.

Cheers
Santhosh
Bangalore, India.


#20

Thank you Venessa...i take your suggestion..."meet more people worthy of my attention"......that should make things better.

cheers,
Santhosh
Bangalore India.