Thank you for this beautiful letter God Bless You
Sorry everyone I’ve been very busy I got gamma knife. That one really well and then on the front left side of my brain I have a swelling I finally had what they call a grand mal seizure my first one was scared the heck out of me cuz I thought I was having a stroke but I wasn’t having a stroke I was having a seizure and I was a grandma and I’m sorry I haven’t kept you guys in loop I have been really busy it’ll taking care of my dad who’s going to be 87 years old and he’s not doing so good thanks to Asian orange is taking his life and he’s going downhill have a good one buy
I haven’t visited AVM site it a couple of years. I love your letter. I was one of the fortunate ones. In retrospect I had symptoms for years. It took feeling like an axe was being slammed in my head (turned out it was exact site of AVM), feeling like my head was exploding during the night & finally atypical seizures. Again by a total fluke my oldest son was living with me during his year between college & medical school. He found me up during the night doing the oddest things & I had no memory of them. He urged me to call my doctor who ordered MRI. I had an embolization followed by crani & excision of AVM. I was truly one of the lucky ones.
I had no bleed & only some facial drooping the day after surgery. But if I’m honest with myself, my brain is not the way it was before.
Fast forward nearly 14 years later, my 4 kids are all married & I have 9 grandchildren. As babies my kids wouldn’t let me pick them up, never walk with them, I can’t babysit them alone, etc.
At 64 I’m still working full time as a nurse practitioner. I have to confess I’m not 100%. My AVM was right frontal lobe along the motor cortex. There are times I have balance issues, my memory is not as good. I went a year without a headache but they’re back (not extent or frequency as before though).
I love the way you explained dealing with your brain. I’m going to try to follow your lead on working with it.
Thank you so much for your letter. It will really make a difference in my thinking about all of this.
It’s now 2020 and you’re still making a difference…
The letter to the brain is so moving, I wish that I could have had that to read 30 years ago after my AVM. I think it would have given me a different perspective on my situation Thank-you
Maybe u could lovingly share this letter from your brain to those people that think your a hypochondriac or just faking it. That’s so sad. People don’t know unless they experience it. I’m sorry. U could copy it and even send it. Take careo
You know, Debbie, the experience of nobody “getting it”, and making assumptions about your physical and mental health is one which many rare disease patients know only too well. For me, being on a Ben’s Friends community has been the best antidote of all.
Glad you posted, and glad you joined! A warm welcome to you.
Seenie from ModSupport
I thought I would bump this up, it had a large impact on me early in this journey. John.
(Author: Stephanie St. Clair)
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 be patient and accepting of what I am now. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or angry, 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 and 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 breathe 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 and be accepting of me if I am different.
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.
Your Wounded Brain
Thanku for sharing thatnagain. I read it a yr ago and today it meant so much more. I cried. It really hit.my heart in a good way. Thanku.
Can we share this on other social media?
The most helpful way to share it on social media is to use the little grey chain link button under the post to get a web address for the page and share the link. That means that you’ll be inviting people who may have similar difficulties to find more than just the text of the “letter”.
I’m so happy you did. It meant so much and helped me just as much “now” as it did “then”.
Thank you. Magda
That’s a wonderful idea, Debbie. Dick, thanks for the guidance on how to link folks to the site/ letter. I hope you both are doing well on your respective recovery journeys.
I’m doing very well, thank you