From Patient to Advocate
Last week, I attended the 2026 National Brain Injury Awareness Conference which is hosted by the Brain Injury Association of America in Washington D.C. This annual trip happens each March, during Brain Injury Awareness Month. I am lucky that my birthday falls within March, so I invite others to help me celebrate by offering a donation to the Brain Injury Association of America. BIAA shared this info:
Brain injury is not an event or an outcome. It is the start of a misunderstood, underfunded neurological chronic condition. People who sustain brain injuries must have timely access to expert trauma care, specialized rehabilitation, and often lifelong disability management to live healthy, independent, and satisfying lives. The Brain Injury Association of America offers help, hope, and healing to all people affected by brain injury. Call the National Brain Injury Center for more info at 800-444-6443.
As part of this year's fundraiser, I also sold copies of the latest Chicken Soup for the Soul: 101 Stories of Resilience for Tough Times, which I am honored to be included in. I have been living with a traumatic brain injury since surviving a car crash in the summer of 2008 that killed my first husband Rich. I choose this nonprofit because their mission means a lot to me.
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. My dear friend Karen Keating, who used to work for the Brain Injury Association of North Carolina, introduced me 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, yet I vaguely remember still wearing a hard neck-collar to protect a healing C1 Vertebrae.
I was safely guided by Karen, who booked all the appointments for me. There was no Soapbox Consulting firm back in those days (the company who now arranges our congressional appointments for attendees), so she called to arrange the meetings herself. I vaguely recall being led to a chair in an office where I simply answered 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, 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.
Since our marriage in 2017, my husband Augustus also attends this annual adventure. Because of his presence, I no longer experience the stress-inducing forgetfulness that plagued my earlier years of travel. As I gained more confidence, I began to help others living with brain injury attend this event. I shared my experience of National Brain Injury Awareness Day with members of a New York City TBI support group that I was part of. With this news and enthusiasm, 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.
Even after all these years, I get so excited to attend the conference, especially when new people join. This year, I met the new Executive Director of the Brain Injury Association of NC, Jen Kimbourgh, and my beloved support group facilitator, Molly Hastings, who is also the Western Outreach and Training Specialist for BIANC. Also in attendance for the first time was my friend Daniel Fenton, a Speech and Language Pathologist from the UNC Thrive Program.
While there were many wonderful memories made, the most unfortunate highlight of this year’s adventure was my unanticipated introduction to two strangers living with brain injuries. Let me take a step back and set the scene: my husband and I decided to break up our eight-hour drive by departing a day earlier. We had just spent $13.22 at the first charging stop in Wytheville, VA, and Augustus got behind the steering wheel of my Tesla Model 3. Moments after he pulled out of the charging station and was about to merge back onto I-81, we simultaneously felt and heard a violent crash, and were catapulted past the Interstate's entrance ramp. My Tesla automatically dialed 911. That's when we realized we had just been rear-ended.
With my seat belt cinched tightly across my chest, I felt my breath start to quickly enter and exit my lungs, almost like a pant. As if on autopilot, I began to self-soothe using phrases like, "We are alright, we are safe, we are okay." When the ambulance arrived, my husband got out of the car and asked the EMTs to check on me, because I may be experiencing PTSD due to a previous crash. I joined Beth in the back of her ambulance so she could check my vitals. As I described where we were headed, Beth revealed that she also lives with a brain injury. I invited her to join me in D.C. for next year's event.
Moments later, I met Dakota who loaded my totaled Tesla onto his tow truck. I told him where we were headed, and he also mentioned that he had sustained a brain injury. I brought up these unexpected introductions during my congressional meetings the next day; to demonstrate how prevalent brain injuries are within the United States. I don't believe Beth and Dakota crossed my path accidentally, I just wish an actual car accident had not been required. I hope to run into them at next year’s event.
The National Brain Injury Awareness Conference provides an opportunity for people to learn about research, prevention, rehabilitation, and community services within the world of brain injury. For me an added bonus, it is a chance to reunite with the other members of the Brain Injury Advisory Council. It is also an opportunity to meet with political leaders who are potential advocates within our communities. Hundreds 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.
We can all be the voice of brain injury and yet we don't have to travel to D.C. to have our voices heard. I invite you to consider how you can help. There is an easy zip code locator at house.gov that will help you find your representatives and their addresses. We can call their local offices and set up an appointment 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 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 the growth that has transpired during my transition from patient to advocate, and I am honored to watch others experience this change as well. This year, I was invited to participate in the "Leveraging Your Story to Inspire Support" session during the conference. I shared why fundraising is important for someone living with a brain injury, offered some tips on how to start a fundraiser, and how to work through the discomfort of asking others for money. At the time of this writing, I am proud to report that I am the second highest individual earner for this year's conference. My birthday is next week, so you still have time to help me raise awareness by clicking here.
Due to brain injury, my life and nearly 12 million other lives are forever changed. Brain injury has recently been classified as a chronic condition, so there will always be new discoveries, treatments and services that become available. For this reason, I will continue to attend the National Brain Injury Awareness Conference. There will always be wonderful new friends to meet who are traveling their own healing journeys. While no two brain injury recoveries ever look the same, there is something tremendously therapeutic about not traveling the path of healing alone.