Helping family to accept BEB


Posted by denise mckew , Mar 27,2002,13:50   Archive
Here's a good question for you all.
My mother is having a difficult time accepting that I have BEB, and that there is no known cure for it.
I have sent her all the information I have recieved from the Foundation for her to read, and keep her posted on my Dr's visits etc., but that doesn't satisfied her. She is now researching the brain and how it functions in hopes that she'll find an answer. And really it's not the gathering of information that bugs me, it's the fact she believes she find a cure.
I'm also having a tough time in that I am trying to accept and move on, and she is still fighting it. All I can think of is Don Quiote fighting windmills.
Here's the big question: Being that she is my mother, and taking care of her children is what she does, and I know it's all out of love, but how do I tell her to let go, and accept this?
Any suggestions?
Take Care
Denise



Recommend Current pageAuthor Profile
Replies to this message


Re: Helping family to accept BEB

Re : Helping family to accept BEB --- denise mckew
Posted by Sally - in - Idaho , Mar 27,2002,15:46 Top of Thread Archive
Hi Denise,

Maybe you might just as well let your mother keep bashing away at those windmills. It is a way for her to take out her frustration and to feel she is doing something. Mothers hate it when there is something they cannot make better for their children. This (BEB) is more than a boo boo that a bandaid and a hug will take care of.

Tell her that as of now, there is no known cure and you are accepting that and going forward in life doing the best you can with a cheerful spirit. But also let her know that you appreciate her efforts to gather information and ... who knows? ... she just might come up with something helpful1

I think that when she sees you doing things you enjoy and smiling at life, she will gradually come to accept.

My mother just tells me, "Why don't you quit being so stubborn and go have surgery and get that taken care of. You could be cured if you'd do that!" (She means for me to have the 7th cranial nerves severed, which is no longer an accepted procedure.

I hope this has helped you a bit. Just some thoughts to ponder.

Good luck.

Sally in North Idaho who would love for someone to find a cure!




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Helping family to accept BEB

Re : Helping family to accept BEB --- denise mckew
Posted by June in Toronto (June Floyd,June in Toronto), Mar 27,2002,16:00 Top of Thread Archive
Denise, I agree with Sally - just let your mother try and find us all a cure - Mother's have to do this I think. She just might come up with something you know and, perhaps, her eyes are better than ours for researching! I can understand how you find it frustrating but she doesn't sound like she lives too near you, as you send her information, so at least its not an every-minute problem is it? Let her `down' easily if you have to. Best wishes.

June in Toronto (beb/meige)




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Helping family to accept BEB

Re : Helping family to accept BEB --- denise mckew
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Mar 27,2002,17:07 Top of Thread Archive
Denise, Humor her, at least she is interested in finding out about this diorder. My family shows no interest in knowing more about this disorder. They don't want to hear about what I have to go through. I have taken a "vow of silence" and am determined not to burden them with my problems. If they ask, I just say I am doing fine or if they should ask about my eyes, I just tell them they are not good and try not to eloborate on it. I have learned over the past 3 years how they feel. Yes, they do take me to the doctors or anywhere I need to go. I know they love me but long term illness is hard for them to accept.

Joyce in NC




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Helping family to accept BEB

Re : Helping family to accept BEB --- denise mckew
Posted by Shirley-Arkansas-USA , Mar 27,2002,20:00 Top of Thread Archive
Denise, I can look at it from a mother's perspective and I know that if one of my children had this that I'd be doing just as much searching for answers for them as I could. I would want to see them going on with their life and dealing with it. I would hope that they would also research things. I wouldn't want my son's to tell me to just accept it and let go. I would be doing it out of love and wanting the best for my kids just like your mom. Like someone else said-humor her and talk to her about the things that she finds out. She wants to understand to. She needs to do this for herself and for you. Just talk to her and let her know what you are willing to try and what not. In learning about the disorder, she will come to realize what the problems are that you are facing.
My parents "just wanted me to get over it" and my dad was concerned that I might not be able to take care of him anymore or drive him around. Count your blessings.

Take her to the conference in Houston in August. That would help both of you.

Shirley in Arkansas




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Helping family to accept BEB

Re : Helping family to accept BEB --- denise mckew
Posted by Pippa , Mar 28,2002,14:59 Top of Thread Archive
Yes, I agree with everything said before. She is a mother..so am I ..and yes, that is what mothers do! I would be at the computer all day long in the hopes of finding something my daughter might have missed , and i would need to discuss it ad nauseum with her, and everybody else. I would be so worried about her.
In fact I already have been researching for myself and talking to everybody about it since I was diagnosed. I am now beginning at last to bore myself about it!
June's thought for the day was something like..."I may be in pain but I need not be a pain". I thought about that today and have decided that i shall stop researching etc for a while and get on with my life. Enjoy every single good day. I feel more able to do this now. So I am sure this phase with your mother will pass too. Let her know that you value and appreciate what she is doing but reassure her that you feel that you can cope if you can forget it as much as possible. That is probably what is worrying her too. She maybe needs to do this to help her adjust to it and to get over the shock too.
And who knows...she just might find something! Someone will one day after all. Why not her? I hope so!



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile