Something For All New Members - A Letter From Your Brain

Just a little something to help you understand where you have been and where you are yet to go in your journey.

Best wishes,

Linda

A Letter From Your Brain - ©1996 Stephanie St. Claire

Hello,

I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me.

As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before.

I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost.

How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh?

Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.

What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.

I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.

I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die.

I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.

Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.

Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.

Love, your wounded brain ©1996 Stephanie St. Claire May be reprinted for personal, not for profit use.
16 Likes

Thanks Linda for sharing this from time to time...I still get teary~eyed when I read it...

Hope all is well in your world...Cyber~thoughts your way ... xoxoxoxo ~ Colleen

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This is very nice!! Thanks for sharing :) It makes soo much sence.... Virginia

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Hi Linda, you are fantastic, i love this letter.

I have saved this 6 months ago when you posted it then.

God Bless you love

Nikki xxx

You are so welcome Colleen. I just love this letter and love it when the newest BAF family members finally read this and it "clicks" that yes, we do get it!

Hope all is well with you also! Loving those cyber thoughts!

Linda

xoxoxox

You are so welcome Virginia! I have it posted all over my life, kitchen by my computer, etc. just a reminder of where I've been and where I've yet to go!

Glad you enjoyed!

Linda

Hi Nikki,

Don't you just find yourself referring to it when you are feeling a little "low" I know I do.

And, may God bless you also!

Linda

xxxx

Thanks so much for sharing this!! It really makes you think and opens your eyes to what is real and how we have to take care of ourselves first before we are able to do anything else. Sometimes after major events like this pass by, other people that haven't been through the same thing don't understand and seem to forget that some things about you will be different. It's nice to know I have somewhere to come and talk with people that can relate to what I am going through and will be going through. :)

You are so welcome Chassity and welcome to BAF and also to the PED Group. We are here to help you get through your upcoming journey. Any questions you have regarding the PED can be posted in the forum or in the PED Group, where we have quite a few members who have already had their PED surgery.

Again, welcome!

Linda

Linda-Thanks so much! Everyone has been so wonderful here. I am still learning how to maneuver my way around the site, so sorry if I post the same questions in different places. LOL It is just nice to know that I have somewhere to come and talk with people that have experienced and been through the same things that I am going through. Thanks for your kind words and helping me out. :)

Chassity,

I am so glad that you are finding everyone here at BAF helpful! I know, after my PED surgery, I was so lost because it was so new and no one had ever even heard of PED. Luckily, I stumbled upon BAF and I had found my "home". The place where they "get me". I am so humbled to be able to help others the way my BAF family has helped me in my after annie journey.

I am always just a post or email away whenever you need me.

Linda

xxxxx

What a great letter! I really can’t believe how accurate that is. I am 5 months out from rupture and clipping and wanting to just be “back to normal”. I am so blessed to not have any disability from my rupture, but I am still struggling with some short term memory issues and recurring headaches. My doctor tells me I am doing too much and need to cut back, which is hard to accept for a young mom of 2 that works a full time job and volunteers for our local EMS. Its great to read something that truly hits home!

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Thank you

It’s easy to be impatient. Thank you for this reminder that it’s a journey.

I have just recently found this community. This letter from your brain has helped me realize that everything I have been going thru is “normal”. I am currently 10 months post ruptures and the chronic fatigue is the lingering effect that I am having trouble coping with. I have learned to deal with the short term memory issues. Thank y’all so much for the stories and encouragement.

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Something I needed to hear today. Its summer time and I’m trying to do all the things I love to do today, but i’m tired, with that dull ache of pressure in my head, and frustrated. I am 8 months post surgical clipping and feeling a little angry and sorry for myself at the moment. I even think at times that I wish I had never had the surgery even though my father had a rupture at my age as well other family members. Its hard when you’re an active person and need to slow down. What you wrote is a good reminder to just start taking care of myself! Thank you!

Thank you so much my eyes are full of tears.Iam new and have speech problem since my brain surgery.But what you wrote really touched my heart.So kind.And I will try to be more kind to my mind.

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Thank you for these moving words. I will work with my brain and help it along the way.

Much love to you

Sarah xxx

You never forget this letter and I also get emotional. I still have it after 12 years. Reading it bring me right back to that day when I could read it . Thank you for sharing.

This is so awesome and so true. How many of us has had this conversation with your brain. Thank you for sharing. This letter says and means so much.