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A Voice for Traumatic Brain Injury

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Craig Sears

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A Voice for Traumatic Brain Injury
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My name is Craig Sears. I'm a survivor of a traumatic brain injury. This is my personal experience about what happens when brain injury goes untreated.

It was July 9, 1987. 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. Everytime 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.

From Craig Sears' personal MySpace page. Edited and used wtih permission. www.myspace.com/searscraig. www.youtube.com/user/craigsearstbi.
 

Comments [9]

Craig, after hearing your story I feel very moved because of being there myself in some ways. I experienced so many similar changes, frustrations, like you say pure hell; and like you I suffered a severe TBI that went undiagnosed for close to a year. I know all about the way that many of us that "don't look the part" get labeled by some health providers, family members, or whoever it me be that has never suffered a TBI or acquired brain injury. Sadly, I don't even remember my login name, but your story has moved me enough to look it up, and finally tell my story that I have held inside for almost 5 years. Ironically, I used to think about doing very illogical stuff because I thought in my head that there would be no difference between being in jail, or outside ( both because a severe TBI is worse than jail - it is its own kind ), and the lack of understanding, medical help, concern by others, and frequent mistreatment by the majority of people who; never receive education or decline to educate themselves. A mental/ psychiatric issue is all the can see from the outside looking in. Out of pure survival instinct I too unconsciously imitated others when I saw something that appeared to either a.) spark a memory of something that, for a fraction of a second, made sense to use toward a physical problem that, at some fraction of a second, at some unknown point in time (which I couldn't sense) beforehand; just luckily and randomly helped. For me, for example, both my wrists were spasming continuously; but was basically unaware of. One day, I saw someone do something with their wrists, that brought back a memory of watching a UFC fighter's (Vanderlei Silva) token "entrance to the octagon" where he always clasped his wrists and rolled them around in circles. Right then I made a connection between that and the fact that my wrists were stuck. After copying it everyday, I realized it was a stretch. I couldn't really feel pain, but I just knew what ever "this" was felt good. With that I began to realize my legs, torso, feet etc. were all in similar states; so I instinctively used stretches I knew beforehand, as well as watch and mimick the different stretches of people at the gym around me. Like you, I had no awareness of my state; and continued to exercise ( as I had done previous to my TBI) and started to faint, cough up blood, sleep for days, have weird "taste" in mouth following exercise etc. but I had no clue, nor could I remember the initial assault; or signs of seizures, stupors, or the two strokes, I suffered weeks to a month after the assault I never really "woke up from". I only did what felt natural, what I did before. Very quickly I found myself in an indescribable euphoria. b.) I lost my sense of self too, except I wasn't aware of that either. I would occasionally " relate to a concept of something I saw on TV or something I did " produced intense sensations," so for some reason that new activity, concept, etc. defined me/was me. 3 years later I was started reintegrating into society, except I didn't know how to act, talk, relate etc to other people; but at least I could actually see as well as decently read faces. Not knowing what to do, still disturbed/ distracted by visual/audio sensory signals being out of sync/ tiring, and attempting to hide any appearance of brain injury; I just observed and imitated whoever it was I was around. After a while I realized I was actually learning some amount of social skills by copying behaviors of people. 2 more years passed before I finally remembered/gathered enough information; not about my present, but about my past to actually say I knew/know who I am and was. All of the info/signals etc learned came at different times and amounts, so this led to layers almost like different people, depending on where and with whom I was; as well as where I am and how much or little I know/knew about the people/place and if in my memory I find a way to relate to it; otherwise it's a painful thing to be aware of, but I get no read and go to "fitting in 101", ask questions; but no real feelings, relating, or empathy occurs. It's an ugly thing to come to grips with. I'm still working at it, and I hope you are too. I have no idea if you can relate to any part of what I said, because I unfortunately only related to you what related to me. Just remember, "mental or psychiatric" problems are both terms that really are actually referring the the brain ( like brain damage/TBI ); but more often than not, those terms apply to imbalances ( oftentimes reversible in stark contrast to brain damage ), or "conditions" that have household names like depression and anxiety etc. the general public is more familiar to those names. Those "conditions" are seen during/after TBI. Since the brain uses these same messengers to control behavior, mood, movement, and every physical process or perceptual interpretation or misinterpretation for that matter, so the extent of damage you sustained, how badly it has changed your life, is invisible; and can be challenging to a.) fix ( there's no fixing, only attempts to stimulate new growth and guide it right in any of the areas; as much as possible) b.) even accurately assess at times. c) medicine hasn't caught up yet; it is only using medicines that can potentially protect your neurons from further damage, and give them the best possible environment/nutrition to stimulate growth. Craig I am terribly sorry to hear what you are going through. I'm 5 years post injury, and still have major difficulties in many areas. But I do want to offer hope. It does get better, and I firmly believe trying to stay optimistic, but realistic helps the "environment" that boosts growth. It's a long road. Message me, I will help you with anything I discovered along my journey, or even just knowing you aren't the only one helps. I'm sorry I wrote so much. I was not trying to be rude or hijack your thread... This is how I communicate in written form, post injury; hard to correct. I wish you best of luck, hang in there.

Jun 24th, 2015 4:42pm

Thank you for telling your story, and I feel for you and the suffering you've been through. My TBI was in 2000 in Switzerland, where I live. Accident June 9th, 5 weeks PTA. August 9th neurologist in charge me told me to 'Go back to work and forget all about it''; that's a direct quote. Luckily my GP sent me to a neuropsychologist for 5 sessions...and that was my rehab. I was well looked after by the school where I teach, but after 6 weeks part time teaching I had a complete breakdown. It was incredible that I couldn't manage to handle a class of kids or cope with the noise & fatigue I got. Anyway, 15 years and 3 breakdowns later I've retrained as a dyslexia specialist teacher so I can work with a max of 4 children. Everything I've achieved has been thanks to the support of my family, and to myself. It's sad that there seems to be so little progress in understanding TBI and helping people cope. Strength and positivity to all those who have gone through, or are going through, TBI. Jo x

Jun 24th, 2015 3:18pm

Thank you for finding a way to support. I'm a 2005 motorcycle accident survivor and have no support because people see the "you look fine".... I try to function but I went from DoD Cleared Electrician to a laid off unemployed uninsured mental mess. Still fighting to have a life back but I'm stuck way down here in the hopeless ditch with no rope to climb out! Where can I get the help I need?

Jun 24th, 2015 12:52am

Hi everyone, today I saw a consultant for approval to try hbot treatments for my brain injury - mostly for the pain that I get, hoping it will relieve it. I have read a lot of testimonies concerning the treatment, especially with regard to how successful it has been for veterans with blast injury, which is not the cause of my case; but brain Injured nonetheless. I received initial health clearance to try the treatments, but upon getting the insurance coverage started, I learned how tbi or any neurological condition related to the brain , is a main Category not covered for this treatment, even though hbot billing specialists fight with insurances for such coverage. The insurances say Congress won't allow because it's still under investigation for 'proof' yet, so many documented cases of veterans with tbi having benefited from the treatment (if they pay for it) 200 - 300 a whack, 20 visits\treatments usually the minimum for results to manifest. As a result of insurance not being able to pay, once again, the wrong treatments\diagnosis being applied - pills, mislabeling, miscategorizing, psyche wards etc - the dam anti depressants syndrome which cause more harm than good - speaking of which, I never understood the glorification of such pills, at least in my experience, the testimonies speak for themselves. Everyone I know who takes antidepressants, don't work, spend all day long. in groups to counteract depression, Suicide, negativity and being stuck in the past, etc totally counterproductive. And I know for a fact that doctors lie about the side effects of these drugs, the biggest lie being with regard to uncomfortable side effects which a person may express; "such effects only temporary", usually told to recipients, it is a LIE FROM hell. As I continue my search to help myself with my own brain injury, I'm starting to see how it (brain injury) and other associated areas need strong voices. Today's note is my beginning to expressing that voice; we all need each other
erica

Jun 23rd, 2015 1:32pm

Thank you!

Jun 23rd, 2015 1:04pm

Craig I want to thank u very much for your inspiring story! It is somewhat similar to mine and my struggles that I still continue to have even today 15 yrs later! No one seems to understand brain injuries! Though I have regained many strengths, I continue to struggle in areas, I too see how I grew up with many thinking errors! I'm encouraged by your story, not only for how closely related it is but for the way God has given you the gift of putting it into words and using to help others to understand brain injury and the ways our lives are deeply affected! Thank you once again for sharing your story and touching my heart! Have a great day

Jun 23rd, 2015 10:29am

I can tell you from expirience. DO NOT GO WITH PUBLIC PRETENDER!(DENFENDER) Get a paid attorney, that has a expirience with brain injury. Craig Sears

Sep 29th, 2010 9:46am

My son was in a car wreck in 07, he has TBI he had several different areas of his brain damaged in 08 his girl friend accused him of rape, he has a public defender,I dont know who to turn to do you know of any thing i can do, i am afraid my son wont survive in prison. Please help!!!

Aug 8th, 2010 2:36am

THANK YOU FOR SHARING YOUR STORY. I\'VE SUSTAINED TBI IN 1996, LOST EVERYTHING: EDUCATION, FAMILY, FRIENDS, SENSE OF SELF, COMMUNITY RESPECT. AND NOW, I AM AT THE OTHER END OF THAT SPECTRUM. GOD HAS GRACED ME WITH AN UNDERSTANDING AND COMPASSIONATE HUSBAND, HEALING IN SOME PARTS OF THE TBI SO THAT I CAN USE MY SKILLS TO HELP OTHERS WITH TBI, AND THE ABILITY TO WRITE AND RECORD MUSIC. I STARTED AND HAVE FACILITATED A SUPPORT GROUP FOR PERSONS WITH TBI SINCE 1998. I PRAY THAT GOD GIVES YOU THE GODLY DESIRES OF YOUR HEART. SINCERELY

Dec 9th, 2009 10:20am


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