If you've somewhat or totally accepted that you're not the same person than before your AVM, is anyone else having some difficulty with others accepting that fact?
Hello Julie. I’m not sure that I have fully accepted my disability. I’ve a great positive attitude but I have difficultly thinking about the future and meeting someone. Can’t imagine being in a relationship and the idea of having children with only one functioning arm terrifies me. I know lots of people can find their way through these things and hopefully one day that’s me. For now I live for today.
Hi Derra and Julie. Meet my friend Kirstin…
http://www.avmsurvivors.org/video/kristin-neuro-film-festival
Also check out my friend Laney’s profile…
http://www.avmsurvivors.org/profile/LaneyMalon
I am sending waves of positive energy your way!
Hi Julie,
I'm still getting there as far as coming to terms with how my AVM changed me. Luckily, my immediate family has accepted that I am not the same person that I was before the AVM, but other family members get really impatient with me. They understand what has happened to me, but do not understand how it affects me daily. Unfortunately, some of the people that I see every week at church is having difficulty accepting the new me, as well. Before my AVM, I was all right in their eyes. Now after the AVM, they cannot be near me, nor can they stand the sight of me. This makes me all the more grateful for those in my life that still love me, and are still patient with me despite my AVM. I hope that answers your question somewhat.
I am simply appauled at those particular "good Christians", but I'm forced to believe that their avoidance is hopefully "just" uncomfort.
It's funny (not ha-ha funny) how there's a big difference between saying it's accepted (by others)and the gap of computing that to everyday functioning issues.
I get stares from kids a lot, but I understand that they're just curious. I guess almost everyone is. Makes me appreciate those who are self-absorbed =) I wish adults would just come out and ask me what my deal is - or something in a round-about way.
Funny Barbara - I've "talked" with Kristin before - we have many common interests.
Hear ya on the future and the relationship thing...I'm simply clueless...in some ways, I guess that can be a strength for me.
Acceptance. That’s all every single one of us wants, from early childhood on out. Very few of us, abled or disabled, actually get it, and if we do it’s usually only from one or two people. Why? Well I think it is because acceptance is impossible without love. Not any kind of love though. Only real, unconditional love. Few of us actually know what that is so we settle for what we think love is. Real love accepts the person no matter their station in life, no matter how they look, how they act, if they are bad, if they make mistakes all the time, if they are mean, if they inconvenience us… and on and on. It’s difficult to love someone like that. Nevertheless, at one time or another we are all like that. We are all in need of someone unconditionally loving us even though we’ve not been our best. Now add a physical disability that all can see, well, it’s just too much love to ask of most people. Don’t let it determine your joy.
My rupture left me physically disebled, which Really SUCKS I have a pronounced limp and I cannot walk more than 20 yards or meters before I tire and must sit. By comparison, I won a Marathon the year before my rupture, I was a soccer coach and owned a horse! There was no limit to my physical hobbies! I so much miss my sporty life style, additionally I lost my liscence so I am Completely dependant on my family! I have moments. fleeting , of peace--where I consider myself lucky that the rupture was on my right side instead of the left!! Ihis is my peace-- that I am Not in my Right mind ! things could be worse!! My left brain was always my better friend !!
Julie, I read your Discussion and started to really think about my feelings during the first 2 years after my brain bleed. In the beginning, I just couldn't believe that I couldn't go back to work, go on disability or not do all the things I used to love doing. I could no longer scuba dive, go on great trips, etc. etc. Now, I accept exactly where my life is now and am back to being happy again!
Stay stronge, Julie and Keep the Faith...
Accepting is hard. I'm stubborn by nature so I insisted I could go back to work, do the things I used to do...I tried but it didn't work. I would say that most of my family has accepted the "new" me but they still can't understand some things. Like why I am utterly and completely exhausted after going out to eat or to a museum or to a soccer game. Truth be told, I'm still trying to accept that this is my life now. Usually I'm pretty good about it, but sometimes it's still hard.
Difficult. I'm fortunate enough to not have much for impairments after bleed and GK, but am waiting for surgery in a couple of weeks with unknowns after that is complete.
Family accepts me, but some friends and co-workers don't understand. Especially when I must leave meetings or parties because the noise and busy atmosphere get to me. (information overload).
Severe headaches from necrosis and some mild issues related to it. People think I'm fine, I look fine, but cannot function nearly what I was able to in the past years even after the bleed.
Try to stay strong, this is what I'm trying to do and all of us must do.
Kc.
My husband has been disabled by his AVM's for 7 years now and it is still hard for him. He feels like a failure as a husband and father because he can't go out in the world and financially provide for his family. Sometimes he comments that he is just a babysitter. He has huge mood swings from the medications and depression so I try to keep him focused on the fact that he gets the best opportunity of any dad to be able to first hand raise his children. After his amputation over four years ago we were told they didn't fix him but they bought him some more time. With that time we are so blessed that he gets the opportunity to spend as much time as possible with his children. Because who knows when his time will be up. Thankfully for us everyone in our family, church and at my new job have accepted Drew's disability and are very helpful...but it wasn't always that way. It was 4 long years of disbelief, job losses, and even seperation before myself, family and our church friends came to realize that these AVM's were real and were going to make or break us. We decided to use them to make us stronger and in doing so it has instilled belief in everyone's lives we touch. So prayers to all of you who are still struggling with your own disbelief or the disbelief of others. May God use this experience to strengthen and guide you in the paths He has set before you.
God Bless everyone,
Crissy
It's hard when you can't do the same things you used to be able to do easily - for me, I used to be a great multi-tasker and was emotionally strong. Now I cry at the drop of a hat, have short term memory problems and can't drive because of my depth perception issues. I think the hardest part is that my husband, as supportive and wonderful as he has been, thinks I'm better than I am. He believes I can do it all...I just have to try. I feel how hard it is, and it's hard to explain why someone would get wimpy when you can't trust your eyes to tell you how close or far away from something you are. I keep thinking things are going to hit me when they aren't really that close. He thinks I can just "stop over reacting" and get used to it. I know that's a typical "guy" response, expecting he can fix it with logic, but I just can't explain the frustration. But hey, I'm alive and doing pretty darn well. We don't get to choose the cards we are dealt, we just try to make the best of it all.
Kat - I can't even begin to tell you how much I relate.
So true, Kim.
Very well said.
I do that a lot, too - think that it could have been much worse.
I'm with you on the visibility of the disability, dependence on transportation, transitioning from being fairly athletic to not-so-much, etc. But it could be much worse =)
Thanks, Louisa. Always great advise. I think that it's just now setting in about future challenges...I had it so easy before...well...
Hey Trish - I, too, get exhausted from what must look like nothing to the average person. Also, hear you on what I like to call stubborn-chic.
When I'm sitting, I look totally "normal" - then surprise - my new normal - I'm not=)