Brain Injury Survivor Supporting the mission of the Sarah Jane Brain Foundation to implement the National Pediatric Acquired Brain Injury Plan (PABI Plan) which develops a seamless, standardized, evidence-based system of care that is universally accessible for the millions of PABI families wherever they live in America

To Whom It May Concern my name is Craig Sears I am a Survivor of a Traumatic Brain Injury.

I am writing on behalf of the Sarah Jane Brain Foundation, and I am adding my support as a Traumatic Brain Injury advocate to your goal of creating a national model care system for children suffering from all Pediatric Acquired Brain Injuries (PABI). This program is sorely needed, and it will help thousands of children and their families overcome the difficulties following a Traumatic Brain Injury (TBI). It will also help raise awareness of TBI and help the thousands of other American adults who yearly suffer a TBI as result of accidents, falls, strokes, or by other means. And it will help protect the children of tomorrow from ever having to experience the horror and heartache of TBI. This coupled with the growing awareness that thousands of our troops returning from Iraq and Afghanistan too are suffering from TBI. This injury is being called the signature wound of these conflicts.

My advocacy started as means to overcome my own difficulties. It's become my mission to make sure that no one else has to go through what I have. This is my story.

It was July 9th, 1987, and it was a beautiful summer afternoon. I was out driving my motorcycle. I had just turned 20 years old and I had a lot going for me. I was making a very good life for myself. I had a great family. I had a good job in construction and also as a part time mechanic. I was making good money for a kid my age. I had a great social life, lots of friends, and I was very popular. I had a great girlfriend. I had 2 cars, a motorcycle, and lived in a nice condo right on the water. I was living the American Dream. Life was great.

And in a heartbeat, it was all gone. Suddenly, I came up over a hill, and there was a car going the wrong way. It was too late. I couldn't stop and we collided. I was thrown nearly 40 feet over on-coming traffic. I landed head first into a curb, just missing a telephone pole.

I have no memory of the next 6 months. That period of time is a Black Hole in my life. I was in and out of a coma, undergoing multiple surgeries. The doctors operated on my head, and did what they could to patch up my body. This was the beginning of my physical recovery.

Though my body was healing, a bigger problem went untreated. And no one realized it then. Insult was added to injury. This is where I fell through the cracks. Despite having my head in a cast, no one identified the true nature of my injury me as being a Traumatic Brain injury (TBI). That oversight would cost me dearly in the years to come. I had no idea of the hell I was in for. Had I known what lay ahead, I would never have fought so damn hard to make it. I would have given up, lay down and died.

My struggles were constant. I had to relearn everything, How to walk, how to talk, how to eat, how to use the bathroom. How to care for myself, and then there was the incessant pain, the physical pain of my body overcoming weakness and injury. Worse yet there was the anguish of not knowing who I was.

Things went from bad to worse. Soon, the treatment center I was in transferred me to a mental health ward. I spent the next 9-months locked in against my will, slowly regaining my memory, and a growing sense that this type of life wasn't for me.

I was angry. I wanted out. I began calling out to anyone who would listen to me Town officials, State Government, anyone who could get me out. While I knew I didn't need to be there, I did know that I needed help in other areas. But the help I needed wasn't available. This was not a mental health issue.

Eventually, a sympathetic ear at the Connecticut Governor's office helped arrange a meeting between my family, my doctors, and a state representative. I told them all, I wanted out, I needed out.

And it was clear to them that I was right. But where was I to go?

I had only one real option, and that was my family. Yet I didn't want to be a burden to my parents. I applied for Section 8 disability housing, and was put on a waiting list. I was turned down repeatedly.

So in the meantime, my family helped me get into my own one room efficiency apartment. While a big step up from the psychiatric ward, this too, was far from ideal. I now found myself living alone, except for the roaches and rats, and vulnerable, in an area known for drug dealers and prostitutes.

I wandered those mean streets, trying to regain some kind of memory. I would watch other people to see what they were doing, how they were acting in order to regain anything that I knew how to do before the accident. All I could figure out at this time was that this was not who I was.

With time and my families help, things began to improve for me. My family got me a weight set, my father bought me a bicycle and I started volunteering at a local hospital. That gave me access to their physical therapy rooms. I'd learn what they were doing for rehabilitation and go back home at night to do the exercises on my own in order to regain my strength and abilities. But without any medical oversight, I'd over do it. I hurt myself repeatedly. Many times, my mother took me to the hospital because I hurt so bad that I couldn't walk or move.

Socially, things were awkward. One day after volunteering, I was leaving the hospital. I saw a woman fall to the floor. My instincts were to grab a wheelchair, put her in it and run her into the emergency room. I thought I was doing the right thing. But in reality, my actions upset the emergency room staff, and the next day, the hospital asked me not to return. I was crushed.

One of the lasting consequences of my TBI was that I would slur my words when I spoke. And my balance would be off when I walked. Instead of realizing that this is how I am, people just assumed that I was drinking or using drugs. No one would take me seriously.

It became harder and harder to find where I fit in. With the help of my family, I moved into and out of different apartments. But the pieces of mind and my life didn't fit quite right. I was restless, and depressed. I struggled to cope. I turned to what I had seen so many others do on the streets: alcohol and drugs. I had learned the wrong way to deal with my problems. I thought it would help me forget all that I had gone through.

Everything I had long fought for, I now started to lose. It was all slipping away. I found myself alone and getting into trouble more often, ending up in shelters, local lockups, and numerous mental health facilities all over the state. Why? Because there was no help for TBI survivors, I continued to spiral down, and soon I wound up homeless, and not long after that, in prison.

The police, the court, the judge and the law, didn't know, care or consider TBI, or the fact that I had one. And once behind bars, neither did the warden. I served 5-years for what other people would sleep off overnight in the local lockup, and then clear up with a brief court appearance. Instead, I ended up inside a level four, high security prison, surrounded by gang members, rapists, killers, and child molesters. I was locked in a 9'x12' cell twenty-four hours a day with a vicious inmate next to me.

While behind bars, I received absolutely no help for my disabilities. There was no early release, or time off for good behavior from my sentence. TBI or not, I served every measure of that sentence to the fullest. And I suffered regularly the indignities associated with such an environment that common decency prevents me from sharing here. It was hell.

Somehow, I survived to be released in 2003. And again I needed a place to call home. After 20 years of waiting and being turned down, I turned to a local Congressman's office for help. Within 2 months, they cut through the red tape, and I finally received recognition of my TBI. And I was accepted into a HUD Section 8 housing unit.

Life though continues to be a struggle. I have no friends. I have no money. I have few options, and fewer choices. I am very uncertain of my future. I still want the American Dream, but it feels further away than ever. I want to be hopeful, but I know all too well how quickly good can go bad in life. But I try my best to help those with TBI get the help they need, and to avoid the mistakes, and missteps I made.

This is why the goal and mission of the Sarah Jane Brain Foundation are important. For myself, I wish on that July afternoon 22 years, that there was a national PAPI plan in place. I wish that the doctors, and nurses, and all the states, cops, judges, and people whoever had the power over me had a clue about TBI. I wish that when I needed it, there were people to turn to, answers to the questions I didn't even know I had, and the resources in place for me. I wonder how different my life would be today.

I would consider it an honor to help you reach your goals, and I offer you my help as an advocate.

Sincerely,
Craig Sears
A Voice for Traumatic Brain Injury

I WOULD LIKE TO ENCOURAGE ALL THE FAMILIES ACROSS THE COUNTRY TO VOICE THIER OPINION ON WHAT THE PABI PLAN WOULD MEAN TO YOUR FAMILY PLEASE SEND ME A WRITTEN TEMPLATE OR VIDEO WITH YOUR NAME AND WHAT STATE YOU LIVE IN STATING YOUR OPINION AND I WILL POST IT ON MY BLOGS TODAY

PLEASE ENCOURAGE OTHERS TO GET INVOLVED

THANK YOU YOUR FRIEND CRAIG SEARS

email it to: craig@thebrainproject.org

Craig Sears
The Sarah Jane Brain Foundation
339 5th Avenue - Suite 405 New York, NY 10016
Phone# 212.576.1180 212.576.1180