In my Brain or IN my Brain

Thank you as usual for freely commenting and sharing your stories when I post. You are all on varying points on this journey and remarkable human beings.


I've mentioned it often enough that I get caught between feeling immensely grateful and extremely guilty. While I willingly gave up things that no longer seemed important, I also try to hold tight to things I think should be. Things that I assume define who I am, or rather, who I was. But truth be told, most of those things no longer fit this person that I am. I look curiously in the mirror and wonder...'who are you?'.

I've been watching how I behave. The default mode I find myself in. The one where I seem to operate on an autopilot where it's as if I'm holding my breath and walking on egg shells. The one where I am impatient with society's foolishness, quick to anger or sarcasm, or indignant. Where I can cry at the joyous simplicity of seeing lightning bugs flicker in the darkness and just as fast want to slap someone on the forehead for telling me I'm back to normal and what am I doing now. The one where all my responses are No, I can't or don't want to....

I listened to my self talk and watched how I behaved. I wondered if the limits were actual handicaps or self imposed restrictions. Is it my brain or all inside my brain? So I started testing it. When I think I can't do something, I try it anyway. A little bit. A test to see if it's really my brain or fear brain. Mostly I've discovered fear has been yapping loudly. And sometimes the worst case scenarios it paints in my head are hilarious or horrifying. I've done small things that make me slightly uncomfortable and large things that make me want to puke. Like reserving a flight to Washington to join my sister on her business trip in August. My sense of direction is shot and I'm convinced I'll be lost wandering amongst the politicians. Scary.

We had a tornado in town a couple weeks ago. We're fine but I've seen some of the devastation left behind. I saw a photo of a man sitting amongst the rubble looking hopelessly lost. I imagine that's how aneurysm survivors are. Sitting amongst the rubble wondering what the hell happened. But at some point it's time to get up and rebuild. It won't be exactly the same but it will be better. It's a slow process of sorting amongst the rubble to find what to keep and what to let go. To learn to trust in self again. To move forward. To smile and enjoy a new life.

I hope you can see this Coldplay 'Fix You' video. The lyrics hit home.

I hope it's ok to share that video! LOL

Thank u so much Harlylena your story is beautiful I cryed whilst reading it I can relate to it so much, my first aneurysm leaked and the blood killed of the left frontal lobe of my brain I dont have any friends because noone understands or even trys to some days im great but when it gets bad its horrible for weeks some times I copied your story and ill read it all the time it helps me to not feel so strange.
Thank u so much again
Go Bless
Michelle.
I also listen to Coldplay Fix You every day. Its like he knows how we feel the lyrics to hit home.

Harleylena thank you for putting into words what I feel. I have 4 aneurysms and waiting to be seen by nuro surgeon in August. I relate to all you have mentioned. I am me and yet not me. I think if I am feeling this now. how will I feel if I have surgery. I am 65yrs and disabled. I have problems moving around and hardly ever leave my home. I just wanted to let you know that I have found joy on your post as it is not only me that is feeling these strange things.

You post the most positive and uplifting messages. Thank you for once again making my morning.

What you have expressed is identical to how things are for me as well. When one Neurosurgeon had suggested I see a Psychologist for my taste distortion, I was ready to slug him! He also recommended an ENT, bless his heart, as I am sure my expression caused him some alarm! The tongue is fine. I had seen a Psychologist for years after this occurred; however, that was not directly related to this event. However, she kept telling me that I really look so normal, as well as others said the same. So, there is indeed a psychological connection to healing, and when the brain is involved, I expect even a bigger relationship. Like you, I try new things to see what can be done, despite thinking there is no way I can accomplish that! I often say-"Well let's take this old girl out for a spin ans see what she does"-almost like a new car! Remarkably, I accomplish the supposedly impossible task. I am not saying it is always easy to do so; however, I have found that it is me who has put the thought of failure in my head, not the fact the aneurysm has done something to change me! It actually gets down to the fact of how badly do I want to succeed, or do I just want to sit in the chair today, feeling sorry for myself-again! Frankly, I, and my family are tired of that routine and there is much of life to be lived. No one knows their timeline and to waste an inch of mine seems a slap in the face to the person responsible for me still being here. Have a glorious day trying new things and giving your new self another twirl on the merry-go-round of life!

You have a calling my Dear, thank you again - you are like good medicine, that works!

Your right some days you feel like you’re walking on eggshells, you have to give it a try and that what I do, I am glad you wrote this. I am not alone. Thanks

Thank you Harlylena again! I simply love your uplifting, introspective, thoughtful writings! You could write a book for aneurysm survivors! I'm glad you talked about fear brain...I certainly am familiar with it...and it is hard to know who is talking. I always try to remind myself of the acronym F-E-A-R: False Evidence Appearing Real, and it surely does. I'll have to look closer at my fears. I wish you much good fortune in Washington...I certainly don't want you kept there with the politicians...now THAT would be a real fear!Face screaming in fear

No one who hasn’t been through this will ever understand what we have gone through or what we are still going through. Those of us who ruptured and learned the truth of our mortality and brush with death will ever forget it. No one who hasn’t experienced a traumatic brain injury can ever imagine the confusion and the paralyzing fear that comes with that confusion. We of course will never be the same, but people looking from the outside don’t know that and can’t understand that. They never will. They just see the same you.

All that being said, we are not the only ones who find ourselves feeling like this. I would gladly go through it all again if it meant I wouldn’t have lost my grandchild. When I was lying in my hospital bed so many people came to see me I couldn’t remember all of them. I volunteer at a hospital and see patients who are dying with no friends or family to comfort them. I wonder what they are feeling. I don’t know. No one knows. Should I feel guilty, I don’t know.

I do know that at some point we all have to make a choice. We have to choose to move on or we will be stuck in limbo. Yes, no one will ever understand us and if you are waiting for that you will be waiting forever. But I learned that to be able to keep on living, WE are the ones who have to understand THEM.

I hope I did not offend anyone

So we’ll said. Thank you.

“Fix You” will help each moment of each day! Thank you each and every moment!

Hear hear Tony! (Or is it here here?). Lol. Anyway, sadly you are correct. We cannot count on others for their understanding. We all have to do our best to pull ourselves out of it as we can and learn what we can from it. I for one have learned so much through all of it and hopefully a lot wiser.

True words fellow night owl- or early bird, or no sleep? :slight_smile:
All we humans are broken, some more than others, struggling to connect, have a purpose, make sense of this life, find peace with it all…
I appreciate people say I look healthy, they only see the surface of me, and on my good hours.
I am grateful I’m still here, not just alive- determined to live as fully as possible :slight_smile:

Thank you, Harleylena. You describe beautifully how it is to be us. And thank you for the Coldplay track. As you say - spot on.

Sally

It is like morning the loss of someone but it is uour former self that is lost

Spoken like a true warrior…Every moment may be a challenge,but every day still ends up being a gift like it’s a present that I’m not sure how to open it like normal people or even quasi normal people…kind of want to keep the ribbon looking so professionally tied and the wrapping paper I want to fold it up and put it in a special place so I could look back on it and say I remember when that happened…problem is I don’t… The memory SUCKS…here today gone in 5 minutes…things come back but it seems only by invitation…

I resonate with all your thoughts and feelings. We’re lucky that we’re given a second chance. Now, we look at things in life differently. Our attitudes have changed…

Thanks for your honest description of what I feel on a regular basis. I wanted to challenge myself to learn something new. I recently turned down a job offer from an insurance company because I am a Therapist. They found me on Monster. com I was not looking for this type of learning experience so I declined the offer. They called me a second time and I decided to at least go to the interview. I’m 15 months post coiling. I am blessed to be alive yet learning to adjust to my rebirth. Fear, anxiety, depression and loss of memory is what motivated me to challenge myself. Listening to the song you posted gave me conformation to trust in myself that I can learn something new.

Your post inspired me to hop in a kayak today and take a short journey down the river. My fear brain (and my other half) did their best to keep me from starting the journey as balance and coordination are not what they were before rupture but I dug in my heels and said so what, maybe I’ll get a little more wet. I did it! I feel great!