My name is Craig Sears and I am a survivor of a Traumatic Brain Injury. My journey has made me all too familiar with the difficulties faced by individuals and their families working through the arbitrary system of care. Suffering from a Traumatic Brain Injury is a life changing event. It's like waking up a new person with limited abilities and a completely new life. After sustaining a Traumatic Brain Injury, I learned how easy it is for the US to take advantage of someone like me. I hope through my story you will become enlightened on the obstacles faced by Traumatic Brain Injury survivors and to my fellow survivors, "You Are Not Alone".
This is my story.
It was a beautiful summer afternoon. I was out riding 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. 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 was not wearing a helmet and 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. 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 as being a Traumatic Brain injury. 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 hard to make it. I would have given up, lay down and died. My struggles were constant, and 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 Psychiatric Hospital. I spent the next 9 months locked in against my will, slowly regaining my memory. I was angry and I wanted out. I would sit by the phone for hours trying to figure out how to make a call out. I finally figured it out and 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 and 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 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 family's help, things began to improve for me. My mother got me a weight set, my father bought me a bicycle and I started volunteering at a local hospital, which 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 and I would hurt myself repeatedly. There were 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 and 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 Traumatic Brain Injury 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.
While I was struggling daily to live with my brain injury, I ended up with several minor arrests for public urination and things of that nature. This resulted in me constantly be thrown into Psychiatric hospitals. After being 4 point restrained and forcefully drugged multiple times and having other patients spitting, urinating, throwing feces at me, and watching them have full blown conversations with themselves, I realized that this type of life wasn't for me. It was like a stay in "One Flew over the Cuckoo's Nest." It was cruel and unusual punishment, no one should be treated the way they treated me.Due to lack of services for TBI sufferers, I became homeless. One day I was walking down the street and I had to use the bathroom, it was very early in the morning and nothing was open. I saw a wooded area by the train tracks. I was using the bathroom behind a tree. I was seen by a metro north police officer that was patrolling the area with his dog. When I spotted him I zipped up my pants and started walking away. When he saw me he let the dog loose. I was severely attacked and had to go to the hospital to be treated for my injuries. When I was released from the hospital I was placed in police custody and informed that I was under arrest for attempted attack on a peace officer because my leg moved when the police dog was attacking me. They accused me of trying to kick the dog. I knew this was crap because I was the one taken to the hospital, not the dog. But the following day I was brought to court. I never saw an attorney; they just continued my case and sent me to the Correctional Center for two weeks. I returned to court, this went on for about three months and from there I was transferred to a Psychiatric hospital for another three months, and then I was released on probation. It was like a revolving door, I can't count how many times they did this to me.With the help of my family, I moved in and out of different apartments. But the pieces of my mind and my life didn't fit quite right. I was restless and depressed. I struggled to cope. I turned to what I saw so many others do on the streets: alcohol and drugs. I learned the wrong way to deal with my problems. I thought it would help me forget all that I suffered through. Everything I long fought for, I now started to lose. It was all slipping away. I found myself alone and getting into trouble more often. I ended up in shelters, local lockups, and numerous Psychiatric hospitals all over the state. I continued on my downward spiral and soon I wound up homeless; and not long after that in prison.I was put in prison for Violation of probation. I was walking down a road and I needed to pee and nothing was open. Due to my previous experience with the MTA dog, I was very leery to relieve myself outside. So when I saw a garage open I went inside and took care of business. As I turned around I saw a Fairfield Police Officer standing there. I asked him, "is there a problem officer?" The next thing I knew I felt a hand on the back of my neck and I was thrown to the ground. From there I was handcuffed and thrown in the back of a police car. The police officer got in the car and once he was driving, I asked again what’s wrong; I was just taking a piss.
The next day I was brought to court, from there to the State Correctional Center. I was housed and brought back and forth and the last day I was brought to court I was told by the Public Defender that I was going to the Connecticut Valley hospital to a brain injury unit but before this happened I needed to see a judge. Yes, they all knew I had a brain injury and how I needed help, but they chose not to. When I was brought upstairs to the courtroom it was closed off for a private hearing. Someone from the state office of Protection and Advocacy for Persons with Disabilities, a doctor and my mother were there waiting. We were all told I was going to the hospital into a TBI unit, but needed to see the judge first. The Superior court judge Never heard anyone's statement, he opened my file and closed it and said he was sentencing me to the department of Corrections because they have one of the best mental health systems in the state. Keep in mind this is not a mental illness it is an injury. I'm still on NO medication and I never saw any shrinks, in or out of jail and I'm NOT mentally ill and when I was put into prison I was put into general population. This time the court gave me 5 years V.O.P. All for peeing in a garage; does that sound like justice to you?
The police, the court, the judge and the law, didn't know, care or consider Traumatic Brain Injury, 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 an 8'x10' cell twenty-four hours a day with a vicious inmate next to me. I was always so scared to come out of my cell but at the same time I was scared to be in it, because of all the other inmates and because you had no choice but to be in a 2 man cell.During my incarcerations, I suffered many indignities and witnessed atrocities. I spent 5 years locked up 23 1/2 hours a day. Only allowed out to shower and make a phone call. I was sent to the medical ward and stripped absolutely naked and left there for days/weeks at a time. I have witnessed murders and rapes. There were nights I would be yelling and screaming in my sleep. Only to be woken up by the CO and put back into a strip cell. Words cannot express the horror of it all. All during a five year prison sentence. Five years that I spent every minute enduring one indignity or another.One day I started to realize that a lot of my things were going missing. When I realized my cellie was stealing from me, I let the Correctional Officer (CO) know during wreck what was going on and I asked for a cell change. I can only imagine that the CO said something to him because after wreck, my cellie attacked me in my cell. After every wreck they do a count and when the CO came by my cell he saw us on the floor fighting. Next thing I knew there were CO's pulling us off one another and putting us in handcuffs and shackles and dragging us off to the AD/SEG for 2 weeks. From there I was sent back to my cell and was put on CTQ for the next 30 days, and I lost all my property (everything) - CTQ is Confinement to Quarters 23 hours a day lockdown, were you can only come out of your cell for a shower, in reality it's 15min. and ASU is Administrative Segregation Unit also known as AD/SEG or the hole. I guess the difference between the two is that if an inmate receives CTQ as a disciplinary action the inmate stays in his same house (cell) but it confined to that area. Where if he was doing AD/SEG time he is in a totally different housing unit; Things like this were always happening to me.
It’s bad enough that 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. Traumatic Brain Injury or not, I served every measure of that sentence to the fullest. 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 HUD subsidized 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. 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.
New York State PABI Plan meeting/reception/dinner at Columbia University Medical Center in NYC on Jan. 8, 2013
It was a full-day planning conference/reception/dinner on January 8, 2013, at Columbia University Medical Center in Manhattan. The meeting was about organizing the National Pediatric Acquired Brain Injury Plan (PABI Plan) and the $2.9 Billion, seven-year federal initiative in New York State. The PABI Plan’s mission is to develop a seamless, standardized, evidence-based system of care for the millions of American youth and their families suffering from the leading cause of death and disability from birth to 25 years of age, acquired brain injury.
The Sarah Jane Brain Foundation (SJBF) is a world-wide non-profit organization with a mission to change the world for the millions of families who have a child or young adult suffering from an acquired brain injury by advancing neuroscience and implementing the PABI Plan. For more information about SJBF, please read Patrick Donohue’s letter to his daughter and namesake of SJBF, Sarah Jane, when she turned five years old: www.TheBrainProject.org/lettertosarahjane.php.
Link to photos: https://plus.google.com/114123425016529532153/posts/RDeTmFw2BTU
Craig Sears - National Advisory Board Family Sarah Jane Brain Foundation