How do u accept ur new life?

When I was diagnosed in June this year with my AVM - my life switched some kind upside down and I was so desperated, feeling lost,depressed, sad, anxious and I thought I could never be happy again. But I earned to live with it and I was lucky to have no symptoms...of course I knew always that this bastard lived in my brain, but I could almost forget about it and live normal and be happy. Since I had my surgery I struggle with the decision I made - to have this surgery. I wasnt aware before it what such a surgery could affect - body, mind, behviour, personality, psyche- nearly everything - and so I am lucky to have only a few side effects from the surgery, I struggle with it on my bad days...I am scared a lot- my vision is affected - i feel weird and confused the most time. I know I am a happy survivor and I should learn to get along with my constitution how it is now - but I can´t. I cry very often or I am scared they did sth wrong there in my head, which scares me as hell...and when i go out and look around I notice every time that it isn´t like it was - that I can´t see properly....I know I should not complain and that I had not really a choice than to treat it or to wait till it ruptures and deal then with the outcome, but as I never had symptoms before and i was so good - I feel so bad now sometimes and I feel as if it is my own fault that I have to live like this now. On good days I know that I did the right thing and that all went so well and that I am blessed how it is...but on my bad days I am just desperated and yet there are a lot more of the bad than the good days. How did u learn to acceot ur "New life"...Why am i so unpleased with verything....!?

It's definitely a big adjustment. Although I'm still awaiting to have this new life feel normal, I try to focus on what I can do, etc. Regarding crying, etc., I know it sucks, but I think you'll have to test your patience - especially during your grieving steps - denial, anger, bargaining, depression, and finally acceptance. Hang in there - it's a lifestyle shift.

Hey Jim - I really feel ashamed now - u are so right - I am still blessed..I just forget it sometimes. There are so many people who are much worse than I am I admire u strength and attitude...pls take care and thx for ur words.

Hello i agree with everyone and experience the same as you have @ Manux. The best thing that we got out of this is that we are blessed because we are here to help one another. To get over this ordeal. God is good!!! and everyone one of you are in my prayers....

Manux,
You are not alone. Each of us have had different experiences but all because of the stupid aliens in our brains. You are allowed to feel every emotion. The day will come when everyday is good. For now just do the best you can through it all.
I'm not sure why this happened to each one of us but I have to believe we were given this for a reason. We are all so strong. Thank you for sharing honestly how you feel.

Lots of survivor love,

Holly

I can understand completely where your coming from....BUT its the best option you took in having surgery as i had mine after i had a bleed (NO CHOICE)...i sympathize with you and feel the same at times like is it still there, am i the same etc etc...but i find being positive as much as you can and thankful to be ALIVE is what keeps me going...God bless and at least your here to share your story with so many people i thought were very rare to find....

The way I have looked at my life since my surgery is this: I spent 28 years of my life prior to my surgery. It has only been 6 years since I had my surgery. I spent close to 5 times as long being the person that I used to be, so there is no way I can simply turn into the "new me" overnight.

It is going to take time, practice, dedicated effort to learn about yourself, and just as importantly... Talking to people that are in the same place as you. I am one of them!

Hi Manux,
I experienced the same things that you have after surgery. After surgery I experienced depression, fear, anixiety, along with physical and intellectual limitations. Unfortunately, I lost a lot of friends because of this, which was frustrating. People would label be as stupid, or weird. It wasn't until about a year and a half post surgery that I began to accept my new life and the new me. I realized that even with my limitations, I am blessed to be alive. I use my free time to volunteer, which has helped to keep me happy.Writing nad getting into craftwork has been theraputic to me as well. Every day I try to remind myself that even though I lost a lot of of friends because of this AVM, I appreciate those who stayed and still love me AVM and all. I try to look at the positive side of things. It has taken a lot of work. My friend, my advice is to be patient with yourself. I believe that you will become stronger as time passes. I hope that helps a little bit.

Hello, Manux, my sweet friend!
As always please look me up if you need anything....Not only do things happen to me at home, but when I went to my neurologist and...less that 1/2 block away, there was a hostage situation where two shooters were holed up in a house. Had our chief of police known I was there, they could have called me to talk them down..I used to dispatch police with his sister, too. There's a special calm I'm given when I'm doing things like that.....Warm hugs!

Rob

Hi Manux,

It took me a long time to reply to this because I'm still on the path to acceptance and feel like I'm not there yet. Then I read all the replies and that gave me the strength to respond. Yes, I am very grateful to still be alive and for the love and support of my family but ever since I first heard about this AVM, life has been nothing but a struggle for me. I have lost those who I thought were friends because of this, I lost a lot of material things including my job because of this, I am no longer active as I once was because of this and I think I’m still in the depression stage as outlined by Julie (I’m certainly not at the acceptance stage yet).

BUT, as bad as this may all be… this is probably the best thing that ever happened to me. Let me explain.

If not for the AVM, I would have never found out about those “friends”, if not for the AVM, I would still be working in the same industry rather than following my passion (working on my second Master’s degree now), and because of this AVM, I found out firsthand the importance of a caring and loving family and of course I found you all. There are many other lessons I’m learning along the way and I hope the learning never stops. But with all the badness that came with this AVM, there have also been twice as many blessings and I can truly feel that. So, I agree… we are all blessed and I hope, somehow everyone eventually sees that. Don’t beat yourself up along the way and no it’s not your fault “that (you) have to live like this now”. But you asked specifically how to deal with this “new life”. As I’ve always said (ad nauseum) that everyone is one their own journey and their behaviors or more specifically their reaction to this thing is completely your choice. I choose to try to find the positive in things and look at what I still have rather than focus on what I lost. It truly helps. But that’s just me. Happiness, as I understand it, will come eventually but we have a lot to do with it. Hope this benefits you in some way and please take care of yourself. :)

Thanks, Swami Jim! I definitely realized that those "friends" who left were never real friends to begin with. I have to see some of those former friends at Church every week, and they give me the same critical look, or make sure that they're at a good distance from me since they still view me as I was when I was first recovering from Gamma Knife. I just grin and bear these days. I don't give them the evil eye that they give me, because that would only make me look bad. Thanks to those former "friends" I've learned how NOT to treat people, not just those who are recovering from a major procedure, but all people. Thanks for your kind words!