Need a friend!

I am the proud owner of a ruptured cranial AVM as of 2009 I have been told on many occasions by my husband that I am not the same person he married duuhhh, as if the paralysis wasn’t the 1st clue! At one time i was fiercly independant and motivated. Nothing like paralysis to take away your independance and driver’s liscence! This AVM is probably more than I can handle. Wasn’t there something about sickness and in health till death do us part! I am glad the AVM is dead but I for one was planning on growing old together! Post avm–marital advice anyone??? Pleaseplease! Today is the lowest of low
Nicole

Nicole, I think many of us have been there, myself included. My husband and I have been married for nearly 22 years and there are still times that we seem to have lost our ability to communicate. No, we are not the same people after an experience like this. It would be stupid to pretend that we are. I too lost all sense of independence, am unable to drive, can’t be left alone for too long, etc. I used to be in a fairly high powered job in a mostly male industry. I understand how you feel. Although my husband is my biggest supporter, he often just doesn’t get it, but how could he? Also, I think we, as survivors, don’t realize how difficult it is on our families, particularly our spouses. Some of them were told we would die, or that we’d be catatonic. That’s pretty stressful and very tough for them. I would encourage both you and your husband to seek counseling. Find someone who’s experienced in dealing with people with brain injuries. A good therapist will help you understand what the other is feeling and going through. Hopefully you’ll both learn better ways to help each other. I wish you the best, but know that we are all here to help!

I have an unruptured AVM that was just diagnosed in April, but I can still say I am not the same woman my husband married. We married 20 years ago. I would think that every person changes over time. We (hopefully) mature. Our priorities change. However, parts of me are still the same. I just have to remember to go back & find the good parts of the younger me sometimes.

My husband would say that having common goals is a key part of a good marriage. So maybe take time to think about what makes you special & tell each other what makes the other person special & think about who you are as a couple–even if the common goal is to help you find some way to gain back part of the “old” you.

Hi Nicole,
I can’t really speak on this subject, but surely want to let you know I’m thinking of you. Allow yourself to feel your low point, but only for a little while. You have a lot of worth and value. I hope that you can get outside help for your relationship and that he sees the value in getting through this together. Maybe even enlist the help of family or friends who can listen, understand the circumstances, and be there to help support your relationship. The sun is shining beautifully today, so I’m sending some of it your way. Hope you find encouragement and peace.

Agree with what’s been posted already.

Additionally, if hubby won’t consider counseling GO YOURSELF. Hopefully, he’ll see the light and join you later. But if he doesn’t, the counseling can help you.

Don’t try to go it alone. Best wishes,
ron, ks

Hi Nicole. I just sent you a private message concerning this subject. You are always in my prayers!

Thank You everyone, I knew I could find the care and support here amongst my friends

Hello Nicole, I’m so sorry that you have to go through this, as I do know what it is like. I had a crainiotomy in July 2009 and my surgeon found out that my AVM was twice size of the MRI. Ended up with my husband being told to get the family quickly as he couldn’t save me. Obviously, he did! Was in a coma, then in hospital for almost 3 months and don’t remember any of that time, except the last week before going home. My husband had and still has great difficulty accepting what has happened to “his Lesley”. I had to learn how to talk again, read, spell, write etc, as part of my brain had to be removed. Yes, I am different now day, brain damage will do that!! The problem is that i do not remember the things I used to do for him, what I used to say, etc and etc! I couldn’t cook or do all the things that we took for granted and he just couldn’t cope with the “new Lesley”, and I knew that I had no idea about the “old Lesley”. We went to counselling for quite some time and I would urge you to do the same, as it is very difficult for the sponse’s and families; and for US!! My husband had been the “love of my life” and we had 9 and a bit years of a great marriage, I really adored him, he was my hero. I know our situations are different Nicole, however, we have so much in common with our AVM’s. Unfortunately for me, my husband told me to leave our home as he just couldn’t stand “me” any longer; he wanted “his Lesley” back and of course, there was nothing I could do about THAT! I hope and pray that you and your husband can weather this awful storm together Nicole. I have been living alone now for 6 months and he still doesn’t want to see me or talk to me until I “change”, which is rather childish as I can’t change back. Instead, I have had to, and still do, the best I can with what I’ve got, on the day. So Nicole, please, please try all you can to have counselling, even if he won’t, make sure YOU do! I did that for months and it has helped me so very much. Also, this site and friends I have met here, help me all the time…they are wonderful people here. Feel free to contact me any time and my thoughts and prayers are with you my friend. Lesley xxxx.

I can understand what you are going through. Your life has changed and along with it your way of looking at things. You need to look for ways in which you can compensate for your paralysis. You can do anything if you are determined. I am paralyzed and yes, I have changed. I have become more determined. I welcome challenges, something I was always afraid of. Your husband worries about you and it’s difficult for him to understand what you are going through. Nicole is right, Counseling will help. You have taken the first step. You are reaching out for help. Stay possitive and be patient. Things will get better. Bless you.

Lesley, chin up, look for all the bright spots, think positive, and remember what you said ‘it may be more than I can handle’ is up to you. The Lord has made us with the miraculous ability to adapt, and as far as your husband, sounds like he needs healing worse than you. He may be the sick one here. One thing is for sure, only a patter of principles taught by the Savior can heal these type of issues. Take each other by the hand, and pray with and for each other night and morning. Get the counseling, but remember the great Counselor is the Savior. Paul once said, “I can do all things through Christ which strengtheneth me” (Philippians 4:13).
I have become a different person through my AVM, and everytime I see an old family video, I think, ‘boy, I wish is was still like that’. But after reading these posts, I must admit I am dealing with nothing in comparison! I have lost my inner ear and balance (especially when eyes closed and at night) and a whole 10 pages of other symptoms, but I can still drive and such! My wife has had to deal with a ton due to my issues, but you know, she is a stronger person because of it. And your husband can get stronger too. But again, it takes not just physical and emotional maturing, but spiritual maturing to be a complete whole healthy person. If he is not able to adjust and adapt through all your trials, perhaps his spiritual growth is suffering. Prayers with ya. Hang in there.


Maria said:

I can understand what you are going through. Your life has changed and along with it your way of looking at things. You need to look for ways in which you can compensate for your paralysis. You can do anything if you are determined. I am paralyzed and yes, I have changed. I have become more determined. I welcome challenges, something I was always afraid of. Your husband worries about you and it’s difficult for him to understand what you are going through. Nicole is right, Counseling will help. You have taken the first step. You are reaching out for help. Stay possitive and be patient. Things will get better. Bless you.

Thanks everyone for the advice and support!My husband has moved myself and our 6 (yes 6)children out of the house. All of us our living with my parents 3 hours away. It is my understanding he is in the process of filing to divorce me? not sure on what grounds. all I know is I get to keep 4 of my children with me except my 16 year old son who is mostly a man any way and we remain very close! I just am at a loss! I was willing and hoping to fight through my recovery together as a team! i do not think he is interrested in counseling he doesn’t care anymore He said it’s been too much So I guess i must move on! A paralyzed stroke survivor-WOW-Now there’s a hot date! If nothing else it makes me more determined to get better! Ah-now there’s the silver lining

Hi Nicole,

That is some sad news, but at least you know where you stand now.

Help me out please–math was never my strong suit. If you have 6 children, and your husband gets to keep 1, and you end up with four… am I missing something??? (grin) Or is there another child somewhere???

My best wishes to you all–be it 4 or 5 kids…

Ron, KS

Nicole, I can relate to your frustration. My partner at the time was there for the surgery… there for the rehab… there for me when I came home to recuperate but had a hard time dealing with the new me as well. I too was fiercely independant prior to the surgery but every one is different (I am quite fond of saying that we’re all on our own journey).

But when push came to shove it was just too much and I found myself alone… or so I thought. People still love you no matter what and your kids will always be your kids. People show their true colors when times are tough. I’m not beginning to say I know or even can relate to what your husband went through but you need to focus on yourself. There are some wonderful people in this group and I’m sure you will always be able to lean on them if need be but make sure you take care of yourself and please continue to keep everyone posted. You will always be in my thoughts and best of luck to you.

Oh, Nicole, I am so sorry to hear what you are going through. As if the AVM wasn’t enough! All I can say is we are all here to support you and listen. PLease post whenever you need to. Sending you a lot of hugs and support from Chicago.

Take Care,
Patti

Sorry about the funny math (pun intended) There are 6. Number 6 was the tricky one i was pregnant with at 39(another issue I know)-- Catholic me. Number 6 is being raised by my parents since post-AVM me is hemi-parysis and unable to provide infant care… So that’s thesad story of my last 2 years. Now the cherry on top will be my divorce at 42; post-stroke, paralyzed, single mom of 4 woweeee there’s a hot date! My maker did leave me a sense of humor however) it may be all I have left
Nicole

Hang in there Nicole. Humor will help keep you strong. All you can do is all you can do. Take pride in whatever that is.

Best wishes,
Ron, KS