Real Stories. Real Recovery. Real People.

Long before I became the Executive Director of A1 Service Coordination and began supporting individuals with Traumatic Brain Injuries, I unknowingly became part of the community myself.

In my twenties, I was working as an Early Childhood Educator. One day, a very young child in my classroom, not even two years old, attempted to jump off the loft structure in the classroom. Instinctively, I ran up the stairs to stop him.

In my rush to protect the child, I forgot something every teacher knew well about that loft: there was a low beam that required adults to duck when going up the stairs.

Even though I am short, in that moment I didn’t bend down.

I ran straight into the beam with full force.

From that moment on, I have no memory of what happened.

According to the other teacher in the room, I immediately began yelling and using language that was completely out of character for me. I continued the rest of the workday as if nothing had happened. I finished my shift, drove myself home, and immediately passed out.

The next morning, everything was wrong.

My vision was blurry. I had a severe headache. I was dizzy and disoriented. I attempted to call out of work because I knew something was wrong, but instead of concern, my director accused me of lying to avoid being in trouble for my behavior the day before.

So I got in my car and drove from Brewster to Purchase to go to work anyway.

I could barely function.

I was pulled into the office and reprimanded for allegedly lying and for “acting inappropriately around the children.” I finished my workday feeling confused, ashamed, and deeply misunderstood.

Later that evening, my sister, who was a nurse, insisted that I go to the emergency room. At the ER, I was diagnosed with a concussion. I was not given any real information about what that meant, no follow-up plan, and no guidance on what symptoms to watch for. I was simply told that I would be fine and sent home.

The message I received was essentially to shake it off and move on.

So that’s exactly what I did.

For more than twenty years, I lived that way.

I pushed through the symptoms. I minimized what I was experiencing because that was what everyone around me seemed to believe I should do. Looking back now, I realize that what happened to me that day was not “nothing.” It was a brain injury, and the effects followed me for decades.

Over time, I began noticing things that felt different about me.

My affect changed. My voice became deeper. My facial expressions were different, and I didn’t smile the way I used to.

People began telling me I looked angry or unfriendly. Some even joked that I always looked annoyed. At the time, I didn’t realize that my brain injury had changed my facial affect.

I also began noticing other changes:

• Difficulty finding simple words
• Forgetfulness
• Lower energy levels
• Sleep disturbances
• Blurry vision
• Vertigo
• Light sensitivity
• Distractibility
• Fatigue

At the time, the symptoms seemed manageable, and like many people do, I kept pushing forward. I worked harder. I adapted. I told myself it was nothing.

Then something remarkable happened.

As my career evolved, I began working more closely with individuals who had Traumatic Brain Injuries. I started studying to become a Certified Brain Injury Specialist (CBIS).

The more I learned, the more I began to see pieces of myself in the people I was supporting.

Their stories began to sound familiar.

The memory issues.

The sleep disturbances.

The word-finding difficulties.

The light sensitivity.

The vertigo.

The distractibility.

The fatigue.

I also began hearing the stories of countless women who had been made to feel like nothing was wrong, who were told they were exaggerating, anxious, or simply needed to push through.

That is when it finally clicked.

What I experienced all those years ago was not just a concussion that I “got over.” It was a traumatic brain injury, and I have likely been living with post-concussion syndrome ever since.

Today, I still experience symptoms including sleep disturbances, difficulty with word recall, blurry vision, vertigo, light sensitivity, distractibility, and forgetfulness. Many of these challenges are invisible to others, but they are very real.

For a long time, I struggled to identify myself as a brain injury survivor. I minimized my experience because I believed others had it worse. I told myself that what happened to me “wasn’t that bad” and that I should simply keep moving forward.

It wasn’t until years later, after attending the Brain Injury Association of America Conference and participating in Advocacy Day, that my perspective began to change.

I had the opportunity to speak with so many incredible professionals, advocates, and survivors who encouraged me to share my story.

Many of them told me something that stayed with me: You should be proud to call yourself a survivor, and you should never minimize your struggles.

For many years I minimized my own experience because I believed others had it worse. What I have learned since then is that brain injury does not need to look a certain way to be real.

Every survivor’s story matters.

Acknowledging my own injury has helped me better understand the people we serve and strengthened my commitment to advocating for individuals living with brain injuries.

If sharing my story helps even one person feel seen, understood, or less alone in their journey, then it is a story worth telling.

For more than twenty years, I didn’t realize I was a survivor.

Now I know that surviving is not just about the injury you sustain — it’s about the life you continue to build afterward. 

- Jenn DiBenedetto, CBIS 

3/14/2019 — the day I received the scariest call of my life.

I will never forget hearing the words, “Your brother was in an accident, and it’s serious. Someone needs to get to the hospital.”

I was the first person they reached. It broke my heart having to repeat those words to my family while trying to get someone to the hospital as fast as possible to figure out what was going on. My uncle arrived first, and we stood there together listening as they explained my brother’s condition.

The moment I heard the words “brain surgery,” I froze. The severity of it scared me to the core. Hours went by, and it felt like eternity. Thank God the surgery went well, but nothing could have prepared us for what came next.

That first week in the ICU was haunting. Not knowing how this would affect him, seeing him restless, and wondering if my younger brother was ever fully coming back to us was heartbreaking.

Then came the moment we first saw pieces of his personality shine through during his eating assessment. My family and I finally breathed a sigh of relief watching him try to get more pudding from the doctor. If you know my brother, then you know this boy has always had a strong love for food.

That ICU experience was extremely hard, and honestly, I’m grateful my brother doesn’t remember it. Looking back on everything still blows my mind. My brother’s recovery has truly been a miracle. I am forever grateful to GOD and to everyone who played a part in saving my brother’s life. I can’t imagine my life without him.

The years following his TBI were extremely tough for both of us. He was only 19 years old when he suffered a traumatic brain injury. He had his whole life ahead of him — plans for college, work, and goals he was ready to chase. Meanwhile, friends around him were moving forward with life and doing things he simply could not do yet.

There have been many struggles, but through it all he continues to be my lovable, sweet, pain-in-the-ass younger brother, and I wouldn’t change a thing.

My younger brother survived being hit by a car and suffering a traumatic brain injury. Today, seven years later, he stands beside me as a TBI survivor who is taking control of his life and pursuing his dreams.

He has faced obstacle after obstacle — struggles most people never see. But if you truly know him and are involved in his life, you see those silent battles. I could not be prouder of his never-give-up attitude.

Seven years ago, my family experienced the reality of traumatic brain injury firsthand through my brother. That experience is why Brain Injury Awareness is such an important cause to me.

I’m grateful to now be in a position where I can help bring awareness to the silent struggles so many people face. I’ve witnessed both personally and professionally the impact a traumatic brain injury can have — not only on the person affected, but also on their loved ones, family, and friends.

It’s not talked about enough. Unlike a broken bone or visible injury, the effects are not always seen, but they are very real.

I’m incredibly proud of my brother, a TBI survivor, and of so many others who face these challenges every day yet continue to push forward and strive for a happy future.

— Rosemary Ferreira

My story is not mine. My story is comprised of the stories of others where I am a mere supporting character.

I have been touched by caregivers including my own mother for my grandmother. I have been a shoulder my grandfather cried on when he watched the love of his life slip away from Early Onset Alzheimer's Disease. But on most levels in my career, mostly, that is what I have been: the shoulder to cry on, the listening ear, and the problem-solver.

To break down my own story, it's how I have managed myself through my empathy and subsequent compassion fatigue. All these stories that I am lucky enough to witness, lend my ear to, or even get to assist in some way, have affected who I am and how I show up in the world.

Being that person to be present with my grandfather in his moment of pure emotion was a gift and an absolute honor. While I don't always get it right and I definitely want to fix all the things, I have learned that the people I serve and their loved ones, especially their loved ones, need me to just listen most of the time. Whether it is a devoted wife crying on the phone while she plans her own anniversary gift from her brain injured husband to make sure he feels prepared, or a mother who has lost her whole family trying to advocate for son that everyone says will never get better, or the stepfather that just lost his wife and is now sick with cancer himself trying to arrange care for his stepdaughter before he leaves this world, I listen. I do my best to fill in the blanks where I can and try to advocate for them all, the person afflicted and the loved ones processing the change in their own life and the person they love. I carry these stories with me. They are not mine, but I feel their weight and I use my acquired knowledge to help where I can.

I don't have all the answers, but sometimes I am consulted by my own family and friends and it is always  a privilege to carry some of that weight with them and offer any assistance I can. I feel grounded in my own usefulness.

While I am not the main character in these stories, I am a conglomerate of them. I hold them in my heart and I learn from them to help others. If I can do nothing else, I am honored to listen.

- Amanda Truffi-Nash, CBIS