Craig Sears, a survivor of a traumatic brain injury (TBI), shares his personal experience about what happens when brain injury goes untreated. His story reveals the need for strong services & supports for survivors of TBI to prevent mental health issues, substance use, desperation, and homelessness.
It was the month of 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.
As I was coming up over a hill, there was a car going the wrong way and I was unable to stop. We collided. I was thrown an estimated 40 feet into on-coming traffic. I landed headfirst into a curb.
I have no memory of the next six months. That period of time is a black hole in my life. I was in and out of a coma, undergoing multiple surgeries. From there I was transferred to a rehabilitation center. While I was in this treatment center, I had to relearn everything about life down to using the bathroom on my own. There, I was fighting against the physical pain and the pain of not knowing who I was. Then one day they decided to transfer me out to a locked, mental health ward in Bridgeport, Connecticut where I was constantly put in four-point restraints and forcefully drugged. (I was told there were no other services offered for people with traumatic brain injury.) After being in the mental health ward for nine months, I began to regain some memory and I knew this wasn't for me! Keep in mind traumatic brain injury is not a mental illness.
So I started to call around to town officials and state government offices to ask them how to get out of the ward. The ward was holding me against my will and I knew I didn't need to be there. I did know that I needed help in other areas because of my brain injury but I also knew I was not mentally ill. After getting through to the Connecticut Governor's office and sharing my story with one of his representatives, they got a hold of the hospital and set up a jury room filled with my family, doctors, and a representative from the state office. All the while, I was saying that I wanted out of the ward. In order to be taken out of there, I had to have a place to go and my only option was my family and I did not want to burden them with the pain that I was going through.
I ended up in a one-room efficiency apartment. At the time, the building was a major drug trafficking building with rats, roaches, and prostitutes. There was no other place for me to go, no help at all; my family had tried everything to get me help. There were no group homes, no programs, no services offered, nothing. I still did not know how to do the basic functions of life so I would wander the 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 memory of anything that I knew how to do before the accident. I knew at that time this was not who I was.
Things began to improve. My mother got me a weight set, my father bought me a bicycle, and I started volunteering at St. Vincent's Hospital in Bridgeport. At the hospital, I could go into the physical therapy rooms and I could watch what they were doing for rehabilitation. Then I would go back home at night to do the exercises on my own in order to regain my strength and abilities. But I overworked myself physically so as time went on, I found that I was spitting out blood and my body was in terrible pain. A touch hurt. I didn't know better, I didn't realize I was harming myself rather than helping and improving. My mother had to take me many times to the hospital because I couldn't walk or move.
Socially, things were awkward. One day after volunteering I was leaving the hospital and I saw a lady fall to the floor. My instincts were to grab a wheelchair and put her in it and run to the emergency department. Because I had ran to the emergency department, they called me the next day and told me not to return. I was crushed. There was a lot of other pain from being turned away … people always assumed that I was drinking or using drugs because I would slur my words and my equilibrium was off because of my TBI. It became harder and harder to find where I fit in. After remembering little things from watching other people and always trying to look at the good things in life, I started wondering what it would be like to get out of where I was living in Bridgeport. I asked my family for help. They got me a different apartment. Every time I moved into a different place, I'd think it would help me by being in a better environment. I would temporarily feel like things were changing.
But I had learned a wrong way of thinking to solve my problems. I started drinking and getting into drugs. I thought it would help me cope with the pain by letting me forget all that I went through. Everything I had fought for, I started to lose. I found myself alone even more and getting into trouble, ending up in numerous mental health facilities all over the state because there is no help for TBI survivors. I continued to spiral down, and soon I wound up on the streets and homeless, and not long after that, in prison
I had several brushes with the law. While I struggled daily to live with my brain injury, I ended up with several minor arrests for public urination and things of that sort. The state of Connecticut did find a way to use my injury against me. It was a probation violation, for which I would ultimately receive a five-year prison term. I spent five years locked up in a level-four high-security prison where I received absolutely no help for my disabilities. I was locked in an 8'x 10' cell twenty-four hours a day surrounded by gang members, rapists, killers, and child molesters. All for peeing in a garage. Does that sound like justice to you? The police, the court, and the judge didn't know, care, or consider my TBI. And once behind bars, neither did the warden. I served five-years for what other people would sleep off overnight in the local lock-up, and then clear up with a brief court appearance. Again, there were no programs, no early release, or time off for good behavior. TBI or not, I served every measure of that sentence to the fullest. Common courtesy prevents me from sharing here. I will leave it up to your imagination to fill in the blanks. It was hell.
Somehow, I survived and was released in 2003. Once again I needed a place to call home. After nearly 20 years of waiting and being turned down, I turned to a local Congressman's office for help. Within two months, they cut through the red tape and I finally received recognition of my TBI. I was accepted into a HUD subsidized housing unit.
Life though continues to be a struggle. 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. So I try my best to help those with TBI get the help we need.
Today more awareness has occurred, but there is still much to learn.
Imagine having a disability that caused you to slur your speech, made it difficult for you to learn new things, and affected your balance. Now imagine that no one knew you had this disability. That's what it's like for people living with a disability as the result of a brain injury. Brain injury is known as an invisible disability because there are often no outward physical signs of the disability. It's not like falling and breaking a leg, where you see it and it heals. A brain injury can last a lifetime. There is no cure, only awareness and prevention. After that there's only support.
Why do people still believe that brain Injury is a mental illness?
That is a question I've been asking for years. There have been many studies shown that brain injuries are NOT a mental illness. Well, then why do the states still continue to put it under that category?
Wake up, Just as no two people are exactly alike, no two brain injuries are exactly alike
Universal Services do not work with brain injury survivors.
Traumatic Brain Injury (TBI) is separate and distinct from developmental and mental health diagnoses. Individuals with developmental disabilities and/or mental health issues may suffer a TBI. However, not all individuals with TBI have developmental or mental health issues. Finally, challenges and interventions implemented with survivors of TBI may be very different from those implemented with individuals with developmental disabilities, mental-health diagnoses and a dual-diagnosis of TBI and developmental disabilities and/or mental health issues.
So how can I prove that brain injury is not mental illness but a TBI
Unfortunately there is no way to answer that question I’ve been fighting four years to be recognized as a brain injury survivor and not Mental-health Below is just one example of one of the things I had to do. Prior to obtaining waiver services, and as a result of a lack of community based supports, I was imprisoned and institutionalized. • The state department of mental health was being sued by 25 brain injury victims who were placed in psychiatric hospitals because there was nowhere else to put them and no services or programs for them. Yes I was one of the 25 brain injury victims Click here: http://www.clearinghouse.net/detail.php?id=439&search
is this still going on can I get involved?
NO the United States says we have rights; but the State's trample all over them as if they are immune…. ABI/TBI waiver 1- Brain Injury Model of Rehabilitation, should have been a role model for the rest of the country instead… The help that I/we were able to receive from that lawsuit came to an end Governor Malloy and Lt. Governor Nancy Wyman and Roderick L. Bremby Commissioner Connecticut Department of Social Services put brain injury back in the mental Health System and are justifying it by calling it ABI waiver II
My back is against the wall.
Over time everyone in my family has moved away and they have asked me to go with them, I looked into it and was told that there is a 5 year waiting list for any ABI Services, and in order to get on the waiting list in that state that I needed to live there for 2 years before I got put on the list; been there, done that. It's bad enough trying to find anyone that knows anything about brain injury. I've been a participant in the Acquired Brain Injury (ABI) Waiver Program for several years in CT and I have YET to find anyone that I don't need to tell what to do, or anyone that does not talk down to me like I'm a 2 year old, or even try to get one over on me!
If there’s one thing I learned! I'm damned if I do, damned if I don’t;
I live and work a program 24/7, I have taken the advice to try and better myself and every time I have, the system has found a way to bring me down and leave me with no room to grow. I understand the advice people have given me and I have used it and have worked it all into my life on more than one occasion. Every time I put the tools in my "tool-box" (or should I say brain) in an attempt to better myself, the system has found a way of pulling me back down I have kept in this "box" where I'm very limited on what I can do. I believe that my rehabilitation has been curtailed as a result.
Never give up this too shall pass....Things work out best for those who make the best out of the way things work out!