Being Misunderstood

Recovering from a near fatal cerebral bleed caused by
an AVM, can bring one into circumstances where huge and
sometimes amusing misunderstandings can arise.

Just a few months after my bleed and operation, I would
get fatigued in a major way often by the early evening.
If I was up too late one of those times I would be
about ready to collapse on the floor and so I would stagger
around instead of walking in a normal way. One day I was
out at a restaurant with my wife when this happened and
she heard what was said and told me that people thought
that I was drunk. I was a bit peeved at them for not
understanding me, but mostly I was amused to be thought
to be drunk because to protect from seizures I had been
told to never get drunk and so I had carried it a step further and since Jan. 2002, I had not had a sip of alcohol. And still have not. If they only knew.

Other misunderstandings can come up, like some people
underestimate you following an AVM, and others overestimate
you.

There is one more thing I wish to talk about here. I
do sometimes feel guilty when I hear about AVM or
aneurysm victims who didn’t survive, or those still going

through horrible related problems from the AVM. Why
did I survive and they didn’t? My guilt does them
no good, but I am sorry.

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Hi John and as usual I can relate to your memory! So, I am at the 3+ year anniversary of my burst and I remember after I clumsily walked out of a restaurant my husband said loudly so others would hear that I shouldn't have had that last drink. Well, I was amused for he knew that I hadn't had anything alcoholic in over a year. Actually, I have stated that after experiencing a damaged brain, I do not plan to have anything that alters my brain again! Thanks for the blog.

Hello John. Thank you for sharing your feelings and story. I completely understand as I don't drink any alcohol at all. I have brain damage from my AVM surgery and sometimes I get dizzy and stumble walking home and I've seen people laughing as they think I am drunk :) If only they knew! For those who don't survive John, I have no guilt but I do hurt and cry a lot for them and for those left behind. I have been saved for some reason and I figure, only God knows. All the best to you!

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Thank you Susan and Lesley,

Susan's husband sounds like he has a sense of humor similar to my own!

And Lesley I do also think that we were brought back for a reason.
But I still feel guilty. Is this like in PTSD?

John, I once posted a blog here entitied: "Do you ever wish you had a sign?" I can totally relate.http://www.avmsurvivors.org/profiles/blog/show?id=1543517%3ABlogPost%3A214689&commentId=1543517%3AComment%3A429687

Thanks, Trish. Outstanding what you wrote! I commented on it.

Hi John...thanks for sharing. I can relate to how you are feeling. My situation may seem a tad different from yours. With me, instead of people thinking that I'm drunk, they all insinuated that I was crazy or stupid and did not want to be around me. One former coworker in particular treated me this way. I guess something I would say and the way I would say it made her think I was crazy. She would ask a question, I would answer to the best of my abilities (as it turns out, I had misunderstand me), and she would give me a look and then back away from me as if I'd lost my mind. She knew of my situation, but could not understand how a damaged brain can affect someone.
Some of my former friends at church don't talk to me or acknowledge my present anymore either. The same people that had sent me get well cards can't stand to look at me. Even though I'm doing better now in many ways, they still view me in that negative light, while a few had taken notice to my improvements. I'm grateful for them. I get underestimated by my manager and some of my coworkers these days. Maybe less than a few them don't underestimate me.

I do understand the feeling of guilt. I do feel sad for those who had not survived AVM, or who still struggle. I specially feel guilt when I vent over my intellectual limitations and the condescension that I get because of it when there are others that are affected in ways deeper than I am.

Stay strong, John. Wishing you the best.

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Leslye,
Thank you. Some people do not understand your illness and they blame you
when they think that you are acting crazy? I have also seen others treat me
in the same way, especially within the first five years after my
illness and my operation.

I used to want to wish that they would have to suffer the same illness that
I once had, so that they would finally understand how it is. But the illness
that we had is too awful to wish on anyone. Even them.

I remember wearing sunglasses so that people would not see just how much
I had been affected by my illness, and this did help some. But I have
not had to do this since the middle of 2007. Is this not why some
sufferers from this illness have killed themslelves?

Hey John; please do try to get rid of your guilt as you have nothing to be guilty about! Easy to say I know. I don't know much about PTSD at all I'm afraid; I'm just very grateful for each day, put a smile on someone's face and try not to bump into anyone :) and stay positive!! Some days I feel very lonely, so I make myself get ready and walk to the little shops, sit in the park and watch the water and I'm always happy that I've done it! Life is too short, so I want to enjoy it all. Stay safe and enjoy every minute!!

Thank you, Lesley.

I try not to feel guilt, but I have felt this way for a long time.
Must keep fighting it!

John, I understand what you mean when you say that you used to wish that those that misunderstand would have to go through the same illness. There have been times when I would wonder if those that do misunderstand me (or assume the worst of me), had gone through what I had, how would they cope? How would they treat others? Would they be a little more sensitive.

What's great about the AVM survivors that I had corresponded with is that they said that they had learned to be more compassionate and understanding to those who fight battles such as ours. I've been reading "Chicken Soup for the Soul: Recovering from Traumatic Brain Injuries" and of the writers had shared that he is much more patient with others now, and more compassionate. My cousin told me that many of us survivors have what those who misunderstand do not have with the patience and compassion that we now have for others after having gone through a tough battle such as ours.

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Leslye,

I have read several of the "Chicken Soup for the Soul" books and
they are very helpful! I will try to find the one that you mention
for recovering from brain injuries. Thank you.

After my own recovery I felt that I was supposed to do something to help some of
those who were close to near death. I tried to do some things for them
and I beleive that some were helped, but I am not the one who deserves the thanks.

John

No problem, John. I know that you can order it through Amazon.com or Barnes and Noble online. This is my first "Chicken Soup for the Soul" book, and I have found it helpful.

Another book that I would recommend is "The Four Agreements" by Miguel Ruiz. It has a section on "Don't Take Anything Personally." Here's a quick quote from it:

"Nothing others do is because of you. What others say and do is a projection of their own reality, their own dream. When you are immune to the opinions and actions of others, you won't be the victim of needless suffering."

I'm sure that you've helped a good number of the folks that you had helped out. I admire your attitude of humility. Take care - I hope that you have a great weekend!

Thank you, Leslye and all others who wrote in!

The guilt I imagine is 'survivors guilt' common in people who have survived accidents or situations that others haven't.

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