March 2

On the flight to DC my Wifey, Gladys, asked if I was nervous.  I hadn’t really thought about it, I was just blind….I had no idea what to expect or to think.  I was sure it wouldn’t be like any construction convention I had been to.  I only met one other Survivor.  So I wasn’t nervous, I just didn’t think of that.

It was amazing!!  Gladys was still working for the “meet & greet” so I went alone.  I got our welcome kits and met up with Daniel, our ‘group leader’, who also is the moderator/coordinator for a Brain Injury Survivor’s Group near our home.

Daniel quickly became like someone who had already taken the class you were about to start, aced it and quickly was becoming your mentor and study buddy for life.  He was thrilled that after 9 years I started to learn more about TBIs and I discovered the BIAA.  He felt bad I had no idea about a Survivors Community, and this was one of the things that helped him….I’ll cut to the chase, I asked why he was at the conference.  A 4 story fall, broken bones, damaged organs and thick black hair to cover the scars of his 17 year old TBI.

His community and the TBI Community helped him survive.  It took him a bit longer than average to get his Masters and certificates….he needed to help make a difference, but he did, because he wanted to dedicate his Surviving to the Community and help others Survive.

Daniel told me, “Join our group when you get back and you will never be alone.  You can participate, you can be silent, share, ask questions get all the information you need, and be a part of that Community.  And I promise you, if you stop showing up, and we don’t hear from you after you have joined, I will start knocking on your door at 6 months if you are silent.  I will find out if you are ok, and if you are ok fine.  But we will make sure you aren’t just left alone.”  Which was something I needed.  I didn’t have a community, and everything for the first couple of years was fine, but then I crashed, I guess….and now things were getting better and didn’t want to feel alone again, ever.  And I really wanted to never put Gladys through that again.  A Community and more understanding of being a Survivor was just what I needed and found.

I met Greg, a great guy who answered the phone when I called the BIAA and told me about it and about the Conference in DC.  That was like meeting the Coach who you had only talked to over the phone about the schools you were going to play for, and now you just stepped up to him and met him.  I was thrilled, he listened to me tell the short version of my TBI story and asked me to come and be a part of this DC Conference!!!  I asked and Greg told me how he became involved with the BIAA, he had lost a best friend from high school to a TBI when he was a young adult and a few years later lost another dear friend as well, so when the opportunity arose he became a part of the organization and is a Director there.

Gladys was able to join me later at the meet n greet, and we met several other Survivors and Care Takers and Support people, it was a great first day.

The second day, BIAA provided  some  ‘Mindfulness’ exercises by wonderful lady Kyla Pearce from Love Your Brain Foundation, who has an amazing story of being involved in the TBI Community due to her husband’s brother’s life story of being a world-famous athlete snowboarder who suffered a TBI.  Kevin Pearce was told he would never be the same, fought to Survive, and has gone well beyond what was predicted.  Now he puts on summer camps and events for Survivors, showing them the way to accepting and Living their new Life.

At the end of the exercises, if we were lead to we could share what we were thankful for, Gladys asked what I was thinking of.  I told her “If I could I would tell her I am thankful I was lead to make the phone call, and that it all unfolded so we got here, and that if I could I would tear up in gratefulness, because this is becoming more then I ever thought it could be.”

There was so many wonderful people to meet and share experiences with.  Updates about the TBI Act, which was up for renewal and was our mission to pitch Congress and Senators to approve it.   This Act gives support and funding to the BIAA and other organizations throughout the TBI community.

We learned that a traumatic brain injury is being re-classified by the medical community no longer as a single ‘event’, but as a lifelong ‘chronic condition’, because of how much it alters a human’s life and puts it in potential harm continuously.  Because it is a dynamic that consistently changes, and is impacted with other injury, age, disease and other changes in the body it will be a condition that continues on and on.

We found out that there was a BIAA state chapter in California at one point, but several years ago it was having some challenges with its focus and members stopped being involved so it was closed.   But, if someone was to start working on putting one together, and find some grant money from a good reputable source….the BIAA would be open to starting a new California Chapter and offering grant money towards a board and setting up the group.  With Gladys’s background in a non-profit healthcare network, this has now become an inspirational calling for her, to help build a Los Angeles, TBI Community.

Me….I’m still amazed that there are others.  That every Friday I get to sit on a video chat with 20-40 other Survivors, first going of the memo that Daniel and Katilyn have put together with updates and events and other things going on in the TBI Community, along with guests that are coming to speak to us.

That there is a Community I stumbled into on Facebook, that I’m becoming a big part of, and that I’ve found friends in other Survivors and that want to know my story and I want to know theirs and help out if I can.

That as I have learned more about TBI, and how it is a part of me, I can share more of this understanding with my friends and family.  It’s not that I ‘hid my accident’ and challenges from anyone, I just didn’t think anyone would believe what it’s like, understand what I deal with, or even care…..

Now I know, that I am not alone, that there are others like me…… and I am a Survivor.