UNITY for TBI Survivors and Caregivers!

This past weekend was an emotional roller-coaster for me. Not just because of the side-effects of my TBI, but because I took action and was beaten down all in a matter of three days.

A couple of weeks ago, I was on Brain Injury Radio with Craig Sicilia to share my story and hear those of other TBI survivors. As the host, Craig's message was one of UNITY among TBI survivors, and my husband and I couldn't have agreed with him more whole-heartedly. Craig reminded us that unity must start with each TBI survivor, in our own communities, and on behalf of each other.

His words were inspiring to me, and I was determined to become an advocate for myself and other TBI survivors, but I didn't know where to start. Writing this blog is one thing, but actually teaming up with other TBI survivors to give support and raise awareness is what I knew would be the next step.

Late last week, my inspiration on how to start on this next step was given to me by my dear friend, Anaperla Aureoles. She sent me a message saying that she had written to Presdient Obama to share her TBI story. She got a letter back and shared that with me too. She told me that her dream is to have 1,000 TBI survivors share their stories with President Obama. She asked me to help her achieve this dream and I knew this was my first chance to do something proactive.

On Saturday, I started a Cause on Facebook called "Ana's Dream: 1000 TBI Survival Stories to President Obama and Politicians." The goal is to share enough stories with the President and other politicians that maybe they will take notice that there are a lot of us out there and we need help, awareness and understanding. At this writing, we already have 50 members of this cause! Anyone can join, share, participate and donate money to the charity I've chosen for this cause, The Brain Injury Association of America (BIA).

I am thrilled with the response so far. There are so many good people out there, and many who don't have TBIs have joined as well, including my always-supportive and loving husband, David. In a way though, even those who do not have a TBI themselves, but who love and care for those who do, have experienced TBIs in a different way. They see our struggles, our ups and downs, our pain and frustration, and everything else that comes along with a TBI. If they have weathered the storm with us, they too are TBI survivors in a way. They have survived our TBIs with us and have given us love and support. Their stories are just as important as ours.

In my enthusiasm for this new cause, I spread the word among the many TBI survivors and caregivers who I have met on Facebook and in various online TBI support groups. So many expressed support and encouragement, and I felt on top of the world for starting a movement among so many wonderful similar movements for TBI awareness and support.

And then my bubble was burst by a single person. That's the problem with bubbles, they are very fragile.

This person, a leader of two Facebook brain injury support groups, excoriated me in no uncertain terms for what I was doing. Not just for creating a Cause, but for writing my story. She told me directly that I was "new at this" and implied that I had no right to do what I was doing and should support her causes exclusively. She also defamed the BIA because of her personal experiences. She discouraged me from having anything to do with them.

This all happened Saturday night. Although she reduced me to tears, I made my peace with her on her group, telling her that I respected her right to her opinions and that I didn't want division or disagreement, and left it at that. But she was determined to "get back" at me somehow, and this morning I awoke to a message from her saying I could not longer be a part of her support groups because of what I was doing.

All I was doing was trying to share my story and help others. I was never rude or disrespectful to her or anyone else.

I will not be bullied and browbeaten. I may be "new at this," but I am not a subservient drone who deserves to be treated in that way. Nor should any other TBI survivor or anyone else for that matter! I told her so in my response and said "good riddance!" to her and her hurtful and spiteful behavior.

This does not change my ideal of unity for TBI survivors and caregivers. I will do what I believe is right and I will not challenge the rights of others to express their opinions and take actions they believe in on behalf of TBI.

I am sorry for this person and hope she realizes that what she is doing is hurtful and divisive. I will continue to admire her for her outspokenness on behalf of brain injury survivors, but I will not be treated as if I am a silly child who knows not what she does. There are too many good people out there who want UNITY and want to share their causes, whatever they may be, and tell their stories. I say more power to those people.

This person does not realize it, but she has just made me stronger and more determined than ever. She may have hurt me deeply and cut me off from much-needed support, but I will find it elsewhere. And I will move on in UNITY!

I am working on writing about Ana because I want everyone to know her and her inspiring story, and I will post it on this blog very soon. Because of her multiple TBIs, it is very difficult for her to share it herself. I have committed to her that I will be her voice, just as she has been my inspiration.

Thank you to everyone who has supported me and given me love and encouragement. I have never met many of you personally, but I love you for what you have given and meant to me, which is unconditional kindness and support.