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Wednesday, May 21, 2014

When I began my journey in brain injury--I lived in a VERY rural area. I was 8 miles from the closest shopping venue, and my doctor had given me a max driving distance of 15 miles (I was getting lost a lot). I had to fudge on that just to get milk.

I turned to the computer to get help--online forums and postings to help me cope. My husband--who is a nice man, but was diagnosed (at the age of 60) with Asperger's Syndrome has little to no empathy. He is a nice guy-but I am lost in his shuffle.

I met some wonderful people online. I am still friends with many of them. They support me much better than most of the people I have known for years.

When I moved to our current location in Grays Harbor WA I made a pact with myself that I would absolutely have a local support group. If I had to start it MYSELF. This is exactly what I did. I met a few people... talked to many. And for many many months it was ME in a room alone. Why? Cuz, um... we are BRAIN INJURED AND WE FORGET WHAT WEEK IT IS!!! So, I chose, to make myself a pact to be there every single week. Every Thursday. Still, I was on my own some weeks, but we have grown. Now, since I care about these people--I really don't WANT us to GROW... because that means that I know more people with brain injuries. You know? Well, we have grown... we have about 12 people regularly that come. I have a set program format, but we make room for those who really need to get stuff out. I think we are making a big difference.

We have lost two of our members already. Two people have died. Both prematurely from situations created by their brain injury. THAT MAKES ME MAD.

But I am glad, that I can share the things I have learned, the people I have met, and the friends I have made.

I don't care if it is face to face, or screen to screen--support is support. And WE ALL NEED IT.
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  • no profile photo BONDMANUS2002
    great going
    1287 days ago
    Thank you Barb, my hubby tends to stick around the house and doesn't like to go to many places or join in conversations around him. He fears making a fool of himself. He finds when people are talking around him and he answers, they look at him funny as they have moved past what he just processed in his mind. Very frustrating for him.
    I have not heard of Brain Bucks and would be interested in finding out about it. I do try to help him but most times, he wants to be on his own to wind down then he might come where I am.
    It is great that the weather is getting him outside more and he was asked to help a friend make over his kitchen. These are things that he needs to do as we all need to feel needed.
    emoticon You are emoticon
    2432 days ago
    Thank you both. @ Blue... I hope your husband is able to get to a place where he can feel accepted. I did lose some friends over the years...and many who just 'don't know what to do with me' at this point in my life. We all breathe deeply in our meetings--knowing we don't have to explain everything (big or small).

    Have you all ever heard of Brain Bucks? It is such an easy program that can be so helpful to explain to outsiders who we are and what is going on with us... Let me know if you haven't. It is a blessing.
    2432 days ago
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    2432 days ago
    It is wonderful that you still have the skills to set up these meetings. I am sure there are many in that group that are very thankful that they have a place to unload their problems and just to have someone listen to them.

    I am on the other side and it is my husband who is the one with the Brain Injury. It is amazing how many people don't take the time to get to know the NEW Tom or even try to understand that he is trying his best.
    I believe that you have gone through a lot of this crap too and I celebrate you for how you just keep going and at the same time try to make things better for others.
    It is sad that you have lost 2 people from your group, we are so Blessed that we still have you to look to for support. emoticon emoticon

    2433 days ago
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