My name is Craig Sears. I'm 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.
It was July. It was a beautiful Connecticut summer afternoon and I was out riding my motorcycle. I had just turned 20, and had a lot going for me. I was making a very good life for myself. I had a great family and a good job in construction and as a part-time mechanic. I was making good money for a kid my age. I had a great girlfriend and lots of friends. I had two cars and lived in a nice condo right on the water. I was living the American Dream. I'll leave that up to you to fill it in because I had everything a man could have possibly wanted — 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 damn 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 out to a local hospital and put me in a mental health ward. (I was told there were no other services offered for people with traumatic brain injury.) I spent the next 9 months locked in against my will, slowly regaining my memory. It was a locked ward and the doors only opened when someone came in or out. I started sneaking out when they would bring in breakfast, lunch or dinner trays. I would run to the back stairwell where the service elevators were, jump in go to the first floor and dart out the front or side door. I would get a couple hours of peace before I would get brought back by the police, because the hospital would always call them and tell them I had snick out again. 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. Keep in mind traumatic brain injury is not a mental illness.
Eventually, a sympathetic ear at the 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 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 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 overdo 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 serious. It became harder and harder to find where I fit in. For example, I was riding my bicycle and a Bridgeport police officer pulled me over. I explained to him that I suffer from a brain injury. He then asked, "Are you on medication?" when I said yes, he gave me a ticket for riding my bicycle while impaired and then sent me on my way.
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. When I would ask for help it resulted in me constantly be thrown into State Psychiatric hospitals, such as the former Fairfield Hills Hospital in Newtown Connecticut... After being 4 point restrained and forcefully drugged multiple times and having other patients spitting, urinating, throwing shit 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 us. My life turned into a constant tug of war. If it was not a mental institution it was a jail cell.
For example, 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 Metropolitan Transportation Authority (MTA 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 MTA 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 Bridgeport Correctional Center for two weeks. I returned to court, this went on for about three months and from there I was transferred to a mental institution for another three months, (Connecticut Valley Hospital in Middletown,) 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 into 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 mental health facilities all over the state. I continued on my downward spiral 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 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.
For example, 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 is 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.
I was put in prison for Violation of probation. Due to lack of services for TBI sufferers, I was again homeless. 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 Bridgeport 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/"pretender" 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. Bridgeport Superior court judge Lubbie Harper Jr. 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. 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. for taking a piss.
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!
During my incarcerations, I suffered many indignities and witnessed atrocities. I spent years locked up twenty-three and a half hours a day, only being allowed out to shower and make a phone call. I was constantly sent to the medical ward and stripped absolutely naked and left there for days or weeks at a time. I've witnessed murders and rapes, and there were even 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.
Somehow, I survived to be released. 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 Traumatic Brain Injury (TBI) get the help we need, and to avoid the mistakes, and missteps I made.
Sarah Jane Brain Foundation Mourns Loss of Devoted Colleague and Friend
February 17, 2011 (212) 576-1180 or firstname.lastname@example.org
New York, NY -- The Sarah Jane Brain Foundation and Members of the SJBF Steering Committee mourned the loss of Dr. Jane Gillett who was a Member of the Sarah Jane Brain Foundation's International Advisory Board. Dr. Gillett passed away Wednesday morning after battling a rare and highly aggressive cancer. She was one of the leading experts in the world dealing with pediatric acquired brain injury and was one of the authors of the National Pediatric Acquired Brain Injury Plan (PABI Plan).
"Sarah Jane's world is better off since Dr. Jane Gillett was part of it. It is a sad day today without Dr. Gillett. The world would be a lot better place if there were more Jane Gilletts in it," said Patrick Donohue, father of Sarah Jane Donohue and Founder of the Sarah Jane Brain Foundation.
"Jane began as a speech-language pathologist with a passion for kids and neurology. She went back to school to become a pediatric neurologist and a well spoken advocate for children with neurological disorders, especially ABI (acquired brain injury). Her commitment to community reintegration resulted in the development of a community reentry plan that is now duplicated in many European countries," said Dr. Roberta DePompei, Chair of the SJBF Steering Committee and Professor and Chairman of the Department of Speech-Language Pathology at University of Akron. "She was one of a few individuals who stayed an extra day to assure that the acute portions of the PABI Plan were well written. She was also a friends to everyone she met and most importantly, she could always select a great bottle of wine!"
"We have lost a colleague, a friend and a sister. Most importantly, our kids with brain injuries and their families have lost one of the strongest advocates I have ever met," said Dr. Ronald Savage, a Member of the SJBF Steering Committee and Chairman of the North American Brain Injury Society.
"Jane was a wonderful blend of strong and sensitive who could see the big picture yet always relate warmly to the individual. Her PABICOP 'flower' model showed great respect for the child and family as the center point yet recognized the key importance of the community that surrounds them. She was always willing to see brain injury rehabilitation as a collaborative team process, all coming together to help the child and family," said Dr. Gerry Gioia, Vice-Chair of the SJBF Steering Committee and SJBF National Lead Director for "mild" TBI, as well as Chief of Division of Pediatric Neuropyschology and Director of the SCORE Program at Children's National Medical Center. "Though we will miss her dearly, her legacy will live on and children will be better for it."
"Jane's flower model is, in fact, a living legacy of someone who was a wonderful colleague and an effective advocate. I am sure her family is surrounded by flowers, however none so lovely as the one she crafted for the children of the world," said Dr. Joseph Tepas III, a Member of the SJBF Steering Committee and Professor of Surgery and Pediatrics at University of Florida.
"I am very happy to have had the chance to know Jane and to work with her on a topic which she was so passionate about. From our first meeting in New York City at the Sarah Jane Brain Foundation Advisory Board inception, through the extra work she put in to get the first draft of the PABI Plan completed, to her participation in our Sports Concussion symposium at last fall's Child Neurology Society meeting, it was always a pleasure to talk and work with her," said Dr. Christopher Giza, a Member of the SJBF Steering Committee and Associate Professor of Pediatric Neurology and Neurosurgery at UCLA Brain Injury Research Center. "We've lost a friend and colleague, but the effort she championed for kids with brain injuries goes on!"
"I think the one amazing thing about Jane (among many) is that WETA chose to feature her video comments on school issues on the Brainline Kids site. It is rare that a neurologist would be so well-spoken, knowledgeable and passionate about the need for schools to do their part in supporting children with brain injuries," said Dr. Ann Glang, a Member of the SJBF Steering Committee and SJBF National Lead Director for Reintegration, as well as Senior Fellow and Research Professor at the Teaching Research Institute and Oregon Center for Applied Science.
Dr. Jane Marie Ruth Gillett, MD, FRCP (C) MHSc, BSc. Hon., was an Associate Clinical Professor in the Department of Medicine at McMaster University in Hamilton, Ontario. Dr. Gillett was also focused on resident teaching and she was recently selected to receive the First Annual John V. Basmajian Award for Excellence in Postgraduate Teaching. To see her complete CV please look here: http://www.thebrainproject.org/advisoryBoard/Jane_Gillett/CV.pdf
The Sarah Jane Brain Foundation
339 5th Avenue - Suite 405 New York, NY 10016
Phone# 212.576.1180 212.576.1180