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Traumatic brain Injury surviver and advocate, raising awareness for brain injury. Living with T. B. I . TBI

 

 
 
 

From Patient to Advocate: The Story of Ten Years at National Brain Injury Awareness Day

Eight months after surviving a life-changing car crash and at a time when people were unsure if I would ever be able to walk again, I made it all the way to the steps of Capitol Hill in Washington D.C. for the 2009 National Brain Injury Awareness Day.  This year marks the tenth time I will be attending National Brain Injury Awareness Dayand in honor of that, I want to examine the impact this event has made on my healing journey.

Writing this was an exercise in concentration and to help fill in the memory gaps, I reviewed old photos that were stored in my iPhone.  I also sifted through old travel timelines and documents that I create called “Lessons Learned”, a habit I developed over my years in public relations.  Fifteen years ago, I had no way of knowing that this skill would later become a helpful brain injury tool that would aid me in being able to remember past events and look forward to future planning.

While reviewing these old notes, here are some important lessons that I learned during my past D.C. adventures:

  • Established a “Capitol Hill Buddy”, a travel companion who would help me not get lost or lose track of time.

  • Printed out the names of people I scheduled meetings with, including times and location of appointments.

  • Packed snacks and remembered to bring cellphone charger.

  • Dated & made personal notes on the back of each business card I collected to help recall who each person was.

  • Printed extra copies of Capitol Hill and D.C. maps for those who may need one.

  • Practiced mindful alcohol consumption during Congressional Brain Injury Task ForceReception.

  • Reminder: don't wear the shoes with the gold buckle, they are very uncomfortable!

  • Reminder: don't wear the gold blouse again, it reveals too much cleavage!

My dear friend Karen Keating from the Brain Injury Association of North Carolina introduced my father and I to this important national event, which has since become one of the highlights of my year.  I cannot recall many of the details from my first trip. I was still wearing a hard neck-collar to protect a healing C1 Vertebrae, so my friend Claire helped me get dressed in my business suit to meet with my North Carolina representatives.  Claire lives and works in the D.C. area, and ever since that first trip she has continued to generously open her home to me and she has become the biggest reason I have been able to attend each year.  The date of the event occasionally falls on my birthday and she has been known to serve me a slice of birthday cake.

Back in 2009, I was safely guided by Karen who booked all the appointments for me.  I vaguely recall being led to a chair in an office where I would simply answer questions.  I have no way of knowing how my answers may have influenced change, I don’t remember whether I felt self-conscious about the neck brace or about the fact that I needed someone to lead me everywhere.  But regardless of this I felt like an expert in that moment and that had a profound and lasting effect on me.  That initial energy is why I continue to advocate today.

So many “versions” of myself have visited D.C. and somewhere along the way I experienced a shift from arriving as a patient to showing up as an advocate.  But that shift did not happen overnight and was not without a lot of bumps along the way.  Prior to the accident, I travelled often for my job and was a skilled navigator.  After the accident, as a TBI survivor, I learned traveling would be challenging.  I believe it was during my 2011 trip to D.C. that I left all of my important travel documents in a folder at home.  I didn’t realize this until I reached Penn Station in midtown Manhattan and had no choice but to return to my apartment on the Upper Westside.  The pressure to get there and back in time was enormous.

I always plan for big trips like this for weeks in advance in order to feel safe.  My bag was packed, and I had prepared a folder with my travel itineraries, D.C. maps, and train ticket.  I remembered my bag, but the folder was still sitting on my dining room table... maybe some of you survivors can relate?  In order to prevent this scenario in the future, I developed a strategy that I still use today.  I leave all important travel documents on the floor in front of my front door (no more table) so I literally cannot walk out of the house without them.

While some years have been a little stressful, others have brought new friends and great connections.  In 2013, I met a survivor from Pennsylvania in a most unexpected way, while I was standing in a bathroom line in the Rayburn Building. 

I guess I was eavesdropping on the two beautiful women standing in front of me, because I interrupted during a break in their conversation. 

“Excuse me” I said.  I have never been a shy person and I had not yet re-developed my brain's filter, “Are you survivors?”

The brunette standing closest to me nodded.  I smiled and arrogantly responded, “Wow!  We make brain injury look good!”  She introduced herself as Angie Ficco and we are frequently asked if we are sisters.  She invited me to attend her state’s annual conference two months later and we have remained close friends ever since.  One of my favorite parts about attending this event is being able to meet incredible people who travel from across the nation to share their stories of survival.

As I gained experience and continued cognitive remediation therapy, I began to help others living with brain injury attend this event.  I introduced awareness of National Brain Injury Awareness Day to members of a New York City TBI support group I was part of.  With the news and enthusiasm that I shared, the NY delegation which went each year grew from one or two folks to a formidable force of ten eager advocates.  It was exhilarating to be part of this purpose driven troop on Capitol Hill.

Every year, including this one, I organize a celebration dinner at a casual Mexican restaurant nearby called Tortilla Coast as a nice way to finish the day.  While noshing on tacos and laughing over margaritas, it isn’t long before many of us are faced with a condition called neuro-fatigue.  I experience it as an overwhelming exhaustion unlike any other.  I will yawn, slur my words, and am unable to focus my eyes.  My husband often recognizes it's happening before I do.  The only remedy I have discovered is immediate sleep.  For this reason and to combat crashing during appointments, I try to carve out a short nap or break somewhere during the day full of action.

National Brain Injury Awareness Day provides an opportunity for people to learn about research, prevention, rehabilitation and community services within the world of brain injury.  It is also an opportunity to meet with political leaders who are potential advocates within our community.  Thousands of survivors, families, friends, and professionals all attend to raise awareness of the many ways TBI visibly and invisibly impacts members of our community and society in general.  During the event, there is an Awareness Fair that is designed to bring people together so that federal and national organizations can network among state peers and leaders.

We can all “Be The Voice of Brain Injury” (BIAA’s slogan) and yet we don't have to travel to D.C. to have our voices heard.  I invite you to consider what you can do to help.  There is an easy zip code locator at house.gov that will help you find your representatives and their addresses.  We can all call their offices and set up an appointments locally to talk about what we know so well: our injuries, and our circumstances.  By telling our stories, we become advocates.  Remember, we can make a local phone call, send an email or write a letter.  By sharing our stories, we can make as much of an impact as the meetings do in D.C.

I recognize all of the growth that has transpired during my transition from patient to advocate, and I hope to someday be invited to join the national Congressional Brain Injury Task Force.  Due to brain injury, my life and millions of other lives are forever changed.  Because there will always be new discoveries, treatments and services that will become available, I will continue to attend National Brain Injury Awareness Day.  There will always be wonderful new friends to meet who are traveling their own healing journey.  While no two recoveries will ever look the same, there is something tremendously therapeutic about not traveling the path of healing alone.

paul daggett