I get the feeling Some times that the support and commitment of my Family is wearing thin!!? Hell, i know its been a 2 year roller coaster ride since the bleed ! I More than Anyone is well aware of that fact! more and More i am getting the impression and indication that my loving family expects more and a speedier recovery from me! I guess the problem may be my own creation.....i WAS So fiercely independent before the bleed. Not bragging, just stating facts. i used to change my car's motor oil myself once my Mother's husband taught me how, I moved away from my parent's home at 17 and went on to have 6 children (because I , but thecould, i thought nothing of driving cross-countryccountry with my brood if there was a Wedding or Reunion I wanted to attend, And my husband moved away when he lost his job, so I ran the whole show on my own; and this was my Joy BUT, the new me can hardly boil a pot of water without burning something! i lost my liscence--hemionopsia Not permitted to drive, so they sold my car to pay my outstanding medical bills! So, I am home-bound, broke, and a source of irritation! ""Why can't you just" the most hated phrase in my vocabulary!" I, bcause my freaking Brain is Still offline!Because my fingers are paralyzed, and my vision has a 40% field cut! Again this is not a pity party, but venting Feels So Good! if i am such an irritation, why can't they all back off?!And if i don't care to eat a frozen pizza for dinner, Let me eat PB&J I tend to prefer it to sodium and plastic!Sorry I had to vent, but I feel much better! Oh, and my husband, he "didn't sign up for all this!" My good friend said look on the bright side, in 10 years "you will be completely recovered, but in 10 years, he will Still be an Asshole!"at least I have friends that care, So I am blessed!
Ein Prosit

I think what gets lost is the compassion from one human being to another. I'm not the person with the AVM, but I am what was first the friend, then the girlfriend and then the fiancé and now his caretaker and sole source of support and care. I've watched him go through despair, anger, fear, etc. since he was diagnosed with his large AVM in 2009. What family and friends forget is that he is still a human being. One that wants to have and continue a normal life as best as he can considering what he has been given. In forgetting this they have all pretty much abandoned him. He already lost his real parents early on and now his foster parents (mainly his foster mother for being too controlling) and foster siblings (too busy), most of his half-siblings (with the exception of one), the wayward friends (those who want to be supportive, but aren’t really there) and the ex-wife who is only interested in trying to get money he doesn't have and making the relationship between he and his son miserable. With all of this I ask, “How can he heal?” Is there no compassion for this man? Could they possibly make him feel more alone or less of a human being?

I witness all of this and I am still here, because he needs to know that someone will advocate and fight for him when he is unable to do it himself. I thank god he still has the will to live, because I’ve seen him want to give up many times. I wish all these people in his life could understand what it must be like for him to have been dealt all this and how he has to cope, because it's not gone or obliterated.

I hope that all family and friends don’t forget that the AVM survivors are still human beings and they still need to feel vibrant, independent and loved; not out of pity, but because they just want to be who they are…themselves. Please let them heal in their own time and come to terms with what has happened and what they’re going through. Always remember to have compassion…

Coconut he is lucky to have you.
Nicole I am sorry for what your going through.

Hang in there Nicole. I know they drive you crazy (mine do too) and you question a lot but they only do it out of love as crazy as that sounds. Granted it's a hard road, but just reading your posts... you can do it. :)
BTW I love your asshole comment... so true...

Oh and Coconut I agree with Candice, he is very lucky to have you. Hang in there too.

Nicole, when it feels like your family can't or won't understand you turn to us. I've done it a time or two myself. That's why we are all here. To find comfort, support, information, love, acceptance, whatever. Also to give it when needed. I've seen you give it lots of times, so when it's your turn to need us, we're here. Your AVM family knows and understands what you are gong through. I can't drive either because of the hemianopsia and I think that's the worst part, having to rely on others when I too was fiercly independant before. I've started a couple of fires in the house, but they still let me cook...just with my husband breathing down my neck the whole time. My family and friends pretend that it doesn't annoy them, but I know it does. I think my husband is about the only one that tries to understand and love me unconditionally. I'm extraordinarily lucky to have him. I'm also lucky to have this site. Please know that we are all here for you. Vent any time and I hope we help you feel better. Tomorrow is a different day. We all have bad ones, but the good ones get better.

Well said Trish. Hope you’re feeeling ok. :slight_smile:

Nicole, my thoughts and prayers are here for you....We all know exactly how you feel...(Except I dont' have 6 kids..which must make it very hard). Vent with us whenever you want...that is what we are here for! Stay Strong, good friend!

You are amazing Coconut. I wish each of us had someone like you in our lives. I really have lost just about everyone. It is sad and if not for my son I would have most likely ended my life already. I appreciate the way you explain we still want to be human. I wish I could get a small amount of understanding and compassion but there is none around me.

I hope your love is managing and is proceeding toward a life AVM free!

<3 Jim

Thanks, Holly. This is not about me, but about watching someone and the rest of you fighting for your lives. Has it been easy for both of us? Of course not, but yet we manage. We try to remain positive and take out the negatives in our lives, anything to make life a bit at ease. A hard thing to do, because yes, we could both give up. It's a choice to have the strength to do so and why we do it.

Keep the faith and keep living for yourself and your son. You're still here and a viable person, don't let anyone ever feel like you're not!

Hi Nicole - I thought I posted to this, but obviously not. I think that "family" is not a one-size-fits-all meaning I think that your family could be made up of anyone who supports you through your AVM issues...and that could be as big or small as you see fit.

Also - hear ya - rollar coaster!

Thanks Julie, in general, I am referring to those blood relatives and/or Spouse, that I live with. Friends and supporters on the other hand I refer to as my 'fan club', they would be those non-blood relatives, that care and do as if we were related! That being said my Fan Club is A+, of which Wells Fargo is decidedly not a member, neither is Blue Cross Blue Shield! Hell, my Fan Club has a dress code, and those fools weren't invited anyway! So I'll make it a personal note to keep those leeches away from my Good Karma! If I could just get my blood Relatives to see the cup 1/2 full! well, life Is a journey, so I have some work to do

Nicole, I do understand how difficult it must be for your parents. I had a brain bleed at age 57 and my daughter has moved back in with her 1 year old and having a brain injury and trying to help my daughter with her 1 year old is very hard. I know your situation is different because you had the brain injury, but I do understand how difficult it is being older with younger children. Stay Strong...that's what I'm trying to do AND Keep the Faith!