Life Before and After: My Brain Injury Journey

In a single moment, everything I knew was shattered. My life became divided into “before” and “after” a traumatic brain injury—an experience that not only changed my body and mind, but revealed just how broken our support systems really are. For years, I felt invisible, struggling against stigma, bureaucracy, and indifference. But I refused to be silent. This is my story of survival, resilience, and the ongoing fight to make sure no TBI survivor is left behind. If you’ve ever felt alone or powerless, I hope my journey reminds you: your voice matters, and together we can demand change.

Early Struggles and Family

For years, I felt alone in my struggles, but I now know that most Traumatic Brain Injury (TBI) survivors share similar experiences. I'm Craig Sears, a TBI survivor. My injury changed my life completely and showed me how the system can take advantage of people with brain injuries. The challenges I faced inspired me to become an advocate, so others don’t have to go through what I did. To fellow survivors: you are not alone. Never give up—keep it simple and take things one step at a time.

Growing up in Connecticut, my sister and I loved the outdoors and our close-knit community, which provided an escape from the turmoil at home. My father struggled with alcoholism and was often absent, while my mother worked multiple jobs to provide for us. Our grandparents offered support and stability during these times.

School was always a challenge. I was diagnosed with dyslexia and placed in special education, which led to teasing and acting out. I eventually dropped out, despite my grandfather’s lessons about the importance of hard work. As a teen, I made poor choices, spent time with the wrong crowd, and got into trouble.

Things began to improve when I met someone special, which motivated me to build a better future and reconnect with my family. But at age 20, a motorcycle accident changed everything and set me on the journey that followed my traumatic brain injury.

The Accident and Life After

In an instant, everything changed. I crested a hill on my motorcycle and was hit head-on by a car going the wrong way. Thrown nearly 40 feet, I landed headfirst into a curb—no helmet, just inches from a telephone pole. I have no memory of the next six months, lost in a black hole of coma, surgeries, and a fight for survival.

My physical wounds began to heal, but the true injury—Traumatic Brain Injury—went unrecognized. Despite my head being in a cast, no one identified the TBI, a devastating oversight that would cost me years of pain and struggle. I had to relearn everything: how to walk, talk, eat, and care for myself, all while enduring relentless pain and a loss of identity.

Instead of receiving proper treatment, I was transferred to a mental health ward and locked away for nine months. Angry and desperate to escape, I called anyone who would listen until help from the governor’s office finally led to my release. But freedom meant being alone in a dingy one-room apartment, surrounded by roaches and rats, struggling to remember who I was and how to live.

Rebuilding and Social Isolation

Rebuilding was a slow, painful process. My family gave me hope—my mother bought me weights, my father a bike—and I volunteered at a hospital to use their therapy rooms. But without medical oversight, I often hurt myself pushing too hard. Socially, I was isolated. My slurred speech and unsteady walk made people think I was drunk or on drugs; the police treated me with suspicion and contempt.

I was repeatedly arrested for minor offenses, thrown into mental institutions, abused, and forcefully drugged—living through scenes straight out of “One Flew Over the Cuckoo’s Nest.” My life became a cycle of jail cells, psychiatric wards, and homelessness. I was attacked by police dogs, beaten, and accused of crimes I didn’t commit. The criminal justice system ignored my brain injury, treating me as a threat instead of a person in need.

In prison, I served five years for what others might have received a night in lockup for. I was locked in high-security cells, surrounded by violence, stripped of dignity, and denied help for my injuries. I lost everything, including the chance to properly say goodbye to my beloved grandfather. The pain of those years is indescribable. If not for my mother’s unwavering support, I might not have survived.

The Fight for Independence

Since my release, I’ve faced loneliness, poverty, and constant uncertainty. The American Dream feels further away than ever. Yet I’m still here, determined to fight for others with Traumatic Brain Injury—so they don’t fall through the cracks as I did, and so no one else has to endure the hell I survived.

My advocacy began as a way to overcome my own struggles, but it has grown into a mission to ensure no one else endures what I have. Today, I am a national advocate for Traumatic Brain Injury (TBI) survivors, speaking with congressional leaders and using my voice for those who are too often forgotten.

Advocacy and Systemic Change

In the 1990s, I joined Connecticut's class action lawsuit and fought for the ABI/TBI Medicaid Waiver, which finally allowed people with brain injuries to receive services in their communities instead of being institutionalized. Although I was incarcerated and denied help at the time, I demanded access to the program upon my release. Without the relentless love and support of my family, especially my mother, I might not have made it through.

Goodwill Industries became a turning point—I was recognized as Achiever of the Year and helped launch the first TBI/ABI social group in southern Connecticut, giving survivors a safe place to connect. With help from my Congressman, I finally received recognition for my brain injury and a place to call home after years of being denied.

Despite these achievements, the fight never stopped. The state repeatedly tried to strip away my basic supports and rights, forcing me to advocate for myself time and again. I have had to prove my disability, defend my right to services, and battle a system designed to keep people like me silent and powerless. I learned firsthand how easy it is for states to discriminate against people with brain injuries—and how rare it is to have the strength, resources, or support to fight back.

My voice grew louder. I became a spokesperson for the Sarah Jane Brain Foundation and the National Pediatric Acquired Brain Injury Plan, traveling the country and speaking in state capitols, on TV, and in Congress. I helped create national awareness, fought for H.R. 2600, and worked alongside families and experts to shape policy for brain-injured youth. I advised re-entry programs for TBI survivors leaving prison, using my own experiences to light the way for others.

Persisting Through Systemic Failure

Yet, the struggle remains. The system still fails us—services are denied, stigma persists, and far too many survivors are left behind, locked away, or lost. I live with memory loss, speech and balance issues, and the haunting effects of trauma. I’ve spent 24 years fighting for independence, only to be held back by bureaucracy, ignorance, and discrimination.

For example, after years of being let down by the police, the courts, and state agencies—despite keeping everyone fully informed of my situation—I encountered another familiar pattern: responsibility shifted, no one willing to help, and the real issues ignored. Here’s what I wrote to the agency in response to yet another round of deflection:

Hi Mrs. X,

Regarding my previous emails and letters (dated 7-15 and 7-17-26), please feel free to share them with your agency.

I want to emphasize that shifting responsibility or moving the program to a different agency does not resolve the underlying issue. This approach feels similar to my experience with the court and police, where the real problem was not addressed but rather deflected. I hope you understand my concerns.

This situation is yet another example of how the brain injury community struggles to find meaningful support and solutions.

Craig Sears

Why I Contacted the Attorney General and State Agencies About the ABI Waiver Program

My name is Craig Sears. I am a traumatic brain injury survivor in Connecticut’s ABI Waiver One program. I contacted the Attorney General and state agencies because my caregivers and I are being failed by the very system meant to protect us.

Despite clear laws and regulations—such as the ADA, Connecticut Paid Sick Leave Law, Fair Labor Standards Act, and others—I and my staff experience wage delays, lack of benefits, and no true recourse when our rights are violated. In my letter, I specifically listed these laws and protections, which DSS and its agencies continue to ignore.

When we raise concerns, agencies pass responsibility back and forth, and nothing changes. Oversight has weakened since Disability Rights Connecticut took over, leaving survivors and staff with little support or accountability.

I’m not just asking for a provider change—I am demanding that state agencies actually enforce the existing laws and protections, so that “person-centered” care is more than just a slogan. Survivors and caregivers deserve real respect, oversight, and protection—not just paperwork and empty promises.

Official Correspondence and My Response

My experience with the Attorney General’s Office is a clear example of how responsibility is often shifted, and real solutions are avoided. Below is a sequence of my correspondence with the Attorney General’s Office, documenting my continued effort to hold the system accountable and my refusal to let my concerns be ignored.

To: Craig Sears
From: Sandra Arenas, Associate Attorney General / Chief of the Division of Consumer and Constituent Affairs, Office of the Attorney General, 165 Capitol Ave, Hartford, CT 06106

Good morning Mr. Sears,

Thank you for contacting the Office of the Attorney General and apologize for the delayed response. We contacted DSS and were informed that the agency in question was suspended and that you have been advised that you can select a new provider. Also, the other concerns you have are related to labor issues and thus you must contact the Department of Labor to hopefully address those concerns at Wage and Workplace Standards.

DSS will keep us informed should there be a need for them to refer to our Office.

Sincerely,
Sandra Arenas
Associate Attorney General

My reply was direct, highlighting the ongoing pattern of agencies passing responsibility rather than providing real help:

Subject: Re: Continued Concerns Regarding DSS and Agency Accountability

Dear Ms. Arenas,

Thank you for your response and for clarifying the scope of your office’s authority. However, I must reiterate that my concerns are not about merely changing providers. As I made clear in my previous letter:

“At this time, I am not seeking to change my provider, but I reserve the legal right to do so at any time. I am speaking up to assert my rights within a person-centered program, to receive the services I deserve, and to be treated with the respect and support I need.”

My complaint is about the actions and oversight of DSS and its contracted agencies, both of which are state entities. I am seeking accountability and a substantive review of how these agencies are operating and the ways in which they are failing to uphold their responsibilities to individuals like myself. Simply redirecting me to DSS, when my concerns are about DSS’s own conduct and oversight, is not a resolution.

I understand your office’s legal limitations. However, as legal counsel to the State and DSS, I believe you have a responsibility to ensure that agencies act within the law and in accordance with their stated mission. At the very least, I expect your office to document these systemic concerns, as they affect not just myself but countless others in the brain injury survivor community.

I will continue to pursue this matter with DSS and other relevant agencies, but I respectfully request that your office acknowledge the seriousness of these issues and ensure that they are properly documented and escalated as appropriate within state government.

Thank you for your attention.

Sincerely,
Craig Sears

Still, I refused to let the matter drop. My final email included the previous correspondence and my formal letter as attachments, reiterating the urgency of my request and my expectation for a meaningful response:

From: Craig Sears
To: Attorney General

Dear Ms. Arenas,
Attorney General's Office, Connecticut

Please be advised that I still expect a response to my previous email and the contents of my letter by the 29th regarding the matter in Leatherhead.

Thank you for your attention to this matter.

Craig Sears
(see below)

Why this matters:
This exchange documents my persistence and refusal to be brushed aside—something every survivor navigating these systems will understand. It’s not just about my case; it’s about exposing a pattern where those most in need are met with bureaucracy instead of support.

Call to Action

But I refuse to be silenced. I am determined to fight for every TBI survivor, for their right to dignity, support, and a place in the community. This isn’t just my story—it’s the story of thousands. We need real change, and it starts with raising our voices together. A single voice may be unheard, but a thousand can shake the world.

It’s time to demand our rights, expose injustice, and fight for a future where survivors are empowered—not forgotten. My mission is clear: never give up, and never let the system write the story for us. We are survivors, and together, we are unstoppable.

Key Facts About Traumatic Brain Injury (TBI)

A traumatic brain injury (TBI) is caused by a blow, jolt, or penetrating injury to the head that disrupts normal brain function. TBIs range from mild (brief change in consciousness) to severe (extended unconsciousness or memory loss), and can result in lasting challenges with independence and daily living.

The Impact:

• Each year in the U.S., 1.4 million people sustain a TBI:
• • 50,000 die
  • 235,000 are hospitalized
  • 1.1 million are treated and released from emergency departments
• Many more go untreated or uncounted.

Leading Causes:

• Falls (28%)
• Motor vehicle crashes (20%)
• Struck by/against events (19%)
• Assaults (11%)
• Blasts are a leading cause for military personnel.

Who’s at Risk:

• Males are 1.5 times more likely than females to sustain a TBI.
• Highest risk: children ages 0-4, teens 15-19, and certain military roles.
• African Americans have the highest death rate from TBI.

The Cost:

• TBIs cost the U.S. an estimated $60 billion annually in medical care and lost productivity.

Long-Term Consequences:

• Over 5.3 million Americans live with a lifelong need for support due to TBI.
• 40% of those hospitalized report unmet needs a year later—most often for memory, problem-solving, managing emotions, and job skills.
• TBIs can affect thinking, learning, language, emotions, sensation, and behavior—and raise the risk for epilepsy, dementia, Parkinson’s, and other disorders.

Personal Note

I have met many brain injury survivors who have been forgotten by their families and by our country, left for “the system” to handle. My own story makes it clear: the current system is broken. No one should have to fight this hard to be heard or helped.

I owe my survival to my heroes—my mother, who never gave up on me, my father, who showed me recovery is possible, my sister, my grandparents, and everyone who has shown me kindness. Faith, family, true friends, honesty, and resilience are what I value most.

My hope is to leave a legacy of fighting for what’s fair, risking for what matters, and helping those in need—so that I leave the world a better place for having lived and cared.

During my hardest times, the poem “Footprints in the Sand” reminded me that even when I felt alone, I was not. Those were the times I was being carried.

It’s been an honor to advocate for brain injury survivors and to be part of a movement for real change. Please help us spread awareness, fight for rights, and support brain injury survivors everywhere.