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AVM Survivors Network

A Letter From Your Brain


#1

(Author: Stephanie St. Clair)

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 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.

Love,
Your Wounded Brain


#2

This brought me to tears…it is sad…touching…true and beautiful! I believe EVERYONE would benefit from reading this and remembering the advice! :heart::heart::heart::heart:


#3

Woh so very true . I really like what your wounded brain wrote. I have had avm 5 years ago and my brain is hurt n needs lots of help from me . I try to help it every way I can but problem is that family and friends fail to believe what my brain wants and needs . So I go all out myself to keep it well and happy . Love u my brain :heart:️:heart:️


#4

I had 2 craniotomies after my cavernous malformation burst 4 years ago. I first read this “letter” on our site shortly afterwards and it summed up everything I was feeling and needed to hear to recover. I felt it gave me the permission and validation I needed to truly take care of my brain–we’re a team, not rivals. I have a copy of this letter on my phone for easy reference. No matter where we are in our recovery, this letter should be read numerous times to remind us that we’re not at war with our brain, we’re side-by-side in the fight to heal.
I’m rooting for all of us.


#5

Your letter has brought me to tears as well. What beautiful writing; thank you for your insight. This is the perfect time for me to read this because I am 11 years post bleed and have JUST NOW come to realize EXACTLY how this stroke affected me. I know, I am a slow learner. I am no longer able to exercise, except for walking a little every day. I have come to realize I can no longer work, even 10 hours a week is pushing it. I had a full career as a professor at a college, which I lost because my brain could not keep up. My body cannot keep up with physical demands either, like cleaning the house. The stroke changed my life entirely and I am still not over the losses. I am even having a hard time keeping up my concentration to write this paragraph. I am very depressed finally 11 years later. Is there anyone else who just never have accepted what has happened to them until years later and then hit you like a ton of bricks the enormity of the changes? I have tried everything to keep my life interesting and productive, but my brain has finally said “no more” to me and I am despondent about it. My personality has changed and I cannot think deeply like I used to and am not nearly as witty/funny as I used to be. I am different and it is all coming at me at this point. Like I said, I am a slow learner. Anyone else have this delayed response to their stroke as I have had? Id love to hear what you have to say about your experience and what you did to get help. Even my doctor (GP) thinks I am a crazy hypochondriac and he has no empathy for me at all. It is frustrating and I feel alone in this. Any responses from others with this same situation I would love to hear from you. Thanks!


#6

@Ljchaks

This can be a tough, tough condition and I’ve read of a number of people who, like you, are battling through but finding it very hard. @Artem I know has been having a tough time.

I think one of the other factors that I have learned as I’ve been a contributor here is getting a bit older can reduce our resilience. @electrician was saying a few weeks ago that he is finding it tough in the last couple of years.

You’re not alone. We can be together to help each other along the way, from time to time.

Very best wishes,

Richard


#7

Thanks for your reply, Richard. And thank you for the contacts of others who are going thru the same thing as myself, I will message them. Yes, I do think age has complicated a bad situation. My aneurysm ruptured 11 years ago when I was 43. I am now 54 and have had to cease almost all previous activity; no working, and no more exercise except walking a little as my muscles are very, very weak. I am only 54, not really very old at all, but I feel physically like I’m 80! I’ve noticed other AVM survivors saying that family and friends don’t really understand, and that is so true. They “look” at me, have a conversation with me and think I am just fine. Its an invisible disability in my case. I guess I should be thankful I am not in a wheelchair or worse. I guess I am just saying that I thought the worst was over when I “recovered” in the first few months after the bleed and got back to work, but that is not true. A survivor must know that as they age they will need to keep a close eye on their health and plan for what aging can do to an already difficult situation. I wish I had known this was going to happen and I might have planned things a little differently for myself. Sorry to go on, but I really do appreciate your response and kind words of understanding. Bless you and have a very Merry Christmas!


#8

@Ljchaks

Merry Christmas to you, too!

There are many different challenges for AVM survivors. As you say, having a “hidden” condition stops many people from understanding, but there will be other people with similarly hidden conditions who get the same misunderstanding and lack of sympathy. We are not alone.

Chin up! My boss of many years ago used to tell us all “nobody ever said life was going to be easy” which I have to admit is true.

Very best wishes,

Richard


#9

I cried the whole way through reading this. Thank you for sharing this! I am going to print it out and keep it nearby as I can relate to all of it, and struggle with self-care and putting myself first. I am a Registered Nurse and putting myself first does not come easy for me; but I have been off work and on Disability since April 2016 due to daily, severe migraines, and I am getting better at taking care of my body and listening/ being aware of what it is telling me.


#10

I found these reflections after my experience still under treatment of an AVMF. This is a breath of hope to me that should be applicable to many similar circumstances in life. Thank you for sharing this with us.


#11

Great letter! I found this today exactly 4 weeks after my craniotomy. It puts into words what I wish many of my neighbors would understand: I am not quite myself yet and I need my naps badly right now. I can’t do as much as I used to and not for as long either–at least not yet. I am still healing. I came too close to dying this time (I nearly drowned in a swimming pool when I was 4 and I remember it vividly and still have nightmares of drowning).


#12

Very well written.


#13

I definitely needed this letter from my brain :two_hearts:


#14

Very touching and very real, thank you


#15

Holdfast and true


#16

I just found this site and for many years I have felt like something was wrong with me. I had been told by my Mom and family that I am fine. I had my surgery 28 years ago and through this site I finally understand my crying or anger or anxiety spells, and my short term memory are from my AVM. In 2010 I had completely different symptoms and discovered that I have 30 cavernous AVMs in my brain. I have “lived” with them but never understood everything I am going through.
This letter was amazing and really has helped me to understand not to get so frustrated. It also brought me to tears, thank you.


#17

Beautiful. Thank you for this. New to site four years post-op. So glad this is the first thing I read.


#18

All I can say is thank you for writing this piece.

It’s hard. For myself, it’s extremely hard when I notice the change. Sometimes i’m tough as nails and I don’t let it get to me and other times, frankly, it scares the shit out of me. I think what has helped me in my “successful recovery” is a positive outlook. I sound like a broken record but that has really helped me. Try not to think so far into the future and take everything day by day. Allow yourself to grieve but UNDERSTAND when it’s time to pick up your socks and move on. After my surgery, when I finally understood what had happened to me- I cried for a full day. I told my family to just let me cry it out- and they did. But I promised myself I wouldn’t let this “situation” take control of me. I wouldn’t let this change me. After a full 24 hours of crying I told myself that I was done crying. I need to focus on recovering. And so I did. A year and a half later i’m typing this out for you all to read from my office at work!

I feel for everyone on this website because we are all the same. We we’re dealt the same cards. Some can handle it better then others. Some need that extra love and care but that’s okay. We all handle things differently. Just remember you will persevere.

If anyone out there needs someone to talk to please don’t hesitate to send me a message.

XOX


#19

Answering the letter from your brain I only have to say that, I been really lucky, from the first time I descovered that I have AVM i was scare, yeah really scare, but I learned to live with it. is been already 11 years since that accident when the doctores descovered that I have it. Never before I experienced anything like it… Anyway… my live continue and I am now here doing what I know is what I needed to do. When the accident Happend I has in Malaysia. Now I am back in my home town visiting my dear mother, a 92 years old beautiul lady, as strong as an ox. with her 92 years of age I only have to say Thanks God I still have her. I am in Colombia South America. Working as an English teacher and enjoying my life, my family and my dear friends. My beautiful people as I always say “mi gente linda”


#20

Please know that you are not alone, my son who is 13 now had his first avm in 2014 and almost a year later in 2015 had a second surgery, with his second surgery he had a stroke and his surgery was a lot longer then the first, he struggles academically, doesn’t remember stuff, slow learning, he’s not at the age level that he should be in school, it makes me feel so bad that he is struggling like this, he has some depression and anxiety, gets upset easily, he’s having a hard time doing his school work at school as well as home. He has just started going to a new school, which has picked up that he may have a learning disability which upsets me that the last school didn’t pick this up and just pushed him thru. We are know going thru testing and a psych evaluation as well. I will fight for Hunter to get what he needs for help.