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May 4, 2010 / onthemarkwriting

True Life With Traumatic Brain Injury


Yes, it took me almost 20 years to be able to say it, but I have a traumatic brain injury. I am head-injured. There’s really nothing wrong with saying it, but for the first five years or so, I was not willing to tell people the reason I’m a little different.

The problem with that strategy was–for me– that I looked completely normal. People couldn’t understand why I made certain choices, and they didn’t comprehend why I would react the way I did when I was told my actions were inappropriate. It’s not because I’m mean, stupid, crazy or retarded; it was because I had a head injury–and my brain was doing the best it could given the circumstances.

Even the smallest things would set me off: I remember my dad telling me to stop reading and come out of my room when my sister was in town for a visit. That set me off. I wound up getting into a shouting match with him and stormed out the door to the garage, where I slammed my fist into a cinder block wall, shattering my fourth and fifth metacarpals, or the bones between the knuckles and the wrist on the right hand.

I was livid when I did this. It was just a way of acting out–a sort of temper tantrum, if you will. That was about 13 years ago. As a result of this little “temper-fit” I had to have surgery to insert a pin and a plate, along with four screws, to hold the bones together while they healed. Sometimes it still gives me trouble, but now I’m more careful about letting my anger get the best of me.

I have made poor decisions socially, as well. Most of what readily comes to mind is rather embarrassing, but it suffices to say that those choices resulted from my being “socially retarded.” I didn’t always pick up on cues from girls indicating that I was too close or was making them uncomfortable. I was treated by those who knew me before and shortly after my car wreck like I was a toddler. And subsequently, I relied on others to police my behavior. When my parents weren’t there, I felt as though I was free to make my own choices…which I wasn’t always ready to make on my own.

One reason for this situation was that my friends before my brain injury all but disappeared after I emerged from the coma. Granted, we really didn’t have all that much in common anymore, but it was really hard for me to accept that we were in separate places in our lives. While I was trying to make it through my two classes without falling asleep, they were trying to figure out what colleges to apply to, and whom to take to prom.

The disappearance of my friends left me feeling anxious and depressed. I first began to realize that something was wrong with me. I constantly started negative self-talk and began to question why people were staying away from me. When someone like my mother would say, “You don’t always behave appropriately,” I would get defensive, defiant, and even aggressive. Even my reaction to the truth was inappropriate.

So I have taken my love of the written language to the next level: with this blog, I have decided that I want to help others who have sustained acquired brain injury and their families. The goal is to provide hope for them that things (life, in general) do get better, indeed. It just takes a great deal of work in addition to the unwavering love and patience of those in the immediate surroundings.

As always, I’d love to hear what you have to say–if you yourself have acquired brain injury or if a loved-one has sustained brain trauma. Feel free to comment or shoot me an email if you’d prefer to keep your story more private.

24 Comments

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  1. brokenbrilliant / May 4 2010 1:05 pm

    Hey there -

    It’s great to have another voice out there, helping people better understand brain injury and how we recover (’cause we do ;) The more of us who speak up and tell it like it is — and show that we’re NOT deficient, just because our brains got rewired at some point — the better.

    Looking forward to reading what you have to say.

    BB

    • onthemarkwriting / May 4 2010 1:44 pm

      That’s what I think, BB. The greater we can make the awareness that TBI survivors are functional, just a little different, the better. Most people are surprised when I tell them I’m head-injured. I have often heard that “I never would have thought you had a head injury.” Well, Surprise! I sure do. And I think God is using me and my ability to write to help others in similar situations.

      I love reading your blog, too. Most of the time I’m able to take your ideas and run with them to make my own post, or just apply them to my own life. Talk to you soon!
      M

    • rachelle / Apr 20 2011 7:28 am

      My son, Joel (21) was jumped from behind, hit the pavement & ended up in CCU with bleeding & swelling on the brain. He’s home with me now as to I am his caregiver ( I’ve worked in a TBI center) and life is really different. We were told he has right & left frontal lobe damage & some brain cell damage. To what degree we don’t know yet. The Doctor’s say it could be 6 months before I know anything.
      What hurts is, he’s in severe pain, throbbing head, can’t stand light (wears sunglasses to bed), and can’t and noise. Even when I go in the room to give him meals or med;s my voice bothers him. I have to whisper. he looks at you like he’s not focused,spacey. his moods are terrible. He forgets when he ate or what he says at times. He eats as though his brain isn’t telling him he’s full.It’s just not my Son & no one seems to understand hoe serious this is because when you visit him the outside is normal but it’s the brain they don’t get & they say: you’re too much, he’s ok.
      He’s not & I know the long road ahead& what could go wrong. Because we have no insurance no one wants to do physical therapy or speech therapy. I’m trying to do the physical & some mental (lumosity.com has GREAT games for anyone but it’s good for TBI recovery) I wish people would learn more about TBI & recovery!!!!!!!!!!

  2. Diana / May 30 2010 12:25 am

    Thank for sharing your information. My 26 year old son had a severe TBI 4 years ago and life has been hard for him..and the family. All of his so called friends and even family don’t see him. They believe he can control all of his actions and behavior and only see the physical disability such as wearing a leg brace and the scar from head surgery. I just don’t know what else I can do to help him recover. He is Very easy to anger and bangs his head if he doesn’t get his way or punches the wall. Even though I know he has trouble with self control, I’m having trouble trying to deal with it and need input.

    • onthemarkwriting / May 30 2010 12:53 am

      Diana – My thoughts and prayers are with you and your son during this tumultuous time in his recovery.

      I understand that his friends don’t come see him. Mine didn’t for a long time. And I burned through friendships like they were match-sticks.

      Here’s what worked for me when I displayed undesirable behavior after my head injury: someone (usually a parent or therapist) would tell me that what I was doing was unacceptable. I know it’s difficult, but don’t show him that his actions affect you. He’s probably seeking attention and if you don’t give in, hopefully he’ll stop.

      When he get’s angry, try to get him to channel the anger into something constructive. Chopping wood, whether it needed to be chopped or not, gave me a physical workout in addition to allowing me to work out my anger.

      Look into local support groups for TBI survivors, also. I’ve attended one, and it seemed like the others in the group had a host of beneficial ideas I could apply to my life–even 21 years after my car wreck.

      Thanks for sharing, and feel free to email me directly at onthemarkwriting@gmail.com.

      m

    • Rozena / Jun 21 2010 4:11 am

      Diana, I know exactly what your facing. I had a severe traumatic brain injury in 2003. I was 14 years old when it happened; I’m now 21….. I had so many friends before my accident: with me being Captain of the Cheerleading squad and everything. People just loved me and I loved them. People just change is what I’ve come to the conclusion of. They dont know how to react or respond to their old friends who suffered a TBI. It angers me sooo much. I often get mad too. Then I feel so horrible about the actions I express onto my mother. I do it all to her because, well…. I love her & I know she’ll continue loving me no matter what I say or do to her. I’m not sure if what I said helped you in any way, but I love talking about what I’ve gone through with others who have similar experiences. So any questions you have or things you want to share _ I think thats awesome and would love to give me input on everything.

  3. Steve Edelman / Nov 13 2010 6:31 pm

    My name is Steve Edelman, 30 years old, and I have a traumatic brain injury. I was injured 3 years ago when I made a really bad decision after drinking a lot of alcohol. My life has changed quite a lot. I lost my “friends”. I lost my girlfriend. I lost my ability to write.

    But time and time itself (with the love of my family!) has given me a REAL life. Now I understand who I am. I understand my real values. I want to help other people; not only those with TBI, but also people with different issues in their lives. I’m in college again to become an ESL teacher. I really care about other people for the first time in my life!
    I feel different now after the TBI happened. I want to read about those who have had TBI in their own lives just like you. I need a little bit more information about living with TBI.

  4. lee / Dec 15 2010 7:01 am

    hi my traumatic head injury 13 years ago after been knocked of my mountain bike i wasnt wearing a healmet and went heat first into a lamp post at around 30 to 40 mph
    i felt the changes to myself as soon as i got home and started to talk to people and the change got worse /i became more aware i was changeing but didnt understand any off them
    people with tbi loose there friends they /i/ we have changed and dont know why ,we dont understand at all whats going on .We are treating people diffrent we are acting diffrent we might be talking diffent and our friends dont see the person they knew, now because we dont understand the change in ourselfs at that time we dont understand why we have no friend ,we can tell them whats wrong we cnt tell them how we have change
    thats the way it is
    ,as for real friends if they knew you had a head injury they would listen and try to understand if they dont do that the you dont need them

  5. lee / Dec 15 2010 7:04 am

    p.s sorry if my spelling is off or u dont understand what i say im not to good at expressing myself anymore
    but i still try haha

  6. "lucky 1" / Feb 25 2011 1:18 am

    A.B.I. week 7th-11th March 2011!

  7. amber / Mar 29 2011 3:34 am

    i wa 16 im 35 now.i was in a severe car accident 7-3-91 . i was found 2 days latter. police and some team had to react what happened. i wa over a 2 story embankment. i had to take cosmetology questions courses of test due to i didnt remember. 20 yrs ago they didnt have the medical technology. i have to have people tell me their names several times, i forget right after they tell me. i had amnesia, any movement id pass out for hours. idont remember the accident and several things prior or after,except sex abuse, being beaten up, i always acted how i thought others would like me. is there a way to find out if i have atbi. my son at5 go cart accident there is so much happenining he is 11 now they never tested to see if trauma to his brain happenened. Doctors say they cant test a child is that true? he was born cyotic blue cord wrapped 3xs around his neck, 10 days old jaundice 33.9school district has emotionally phycally abused him on all levels. police reports punishments ue to him not understanding writting reading since 1st grade after 2 yrs.of kindergarten pre nursery and nursery. can this trigger a tbi if i have one and is there help for my baby to find out if he has one from7 yrs ago?please i pray for god to leed my family in the help to get education my kids deserve and for me to undrstand why im the way i am.
    sincerely,
    a mommy who wants the best for my babys

  8. amber / Mar 29 2011 3:37 am

    i forgot to check mark the response i just wrote about myself and my son

  9. Craig Sears / May 16 2011 2:32 pm


               
           My name is Craig Sears, and I am a Survivor of a Traumatic Brain Injury. 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.

  10. Matt Craft / Jul 2 2011 8:28 pm

    Hi there my friend. It is overwhelming to me when I read your story. It sounds exactly as though you’re telling mine. I have so many questions. I would love it if we could talk through email. I was in a motorcycle accident about a year ago, suffered a TBI which resulted in a coma. Now home and walking again I have the same “inappropriate” issues you wrote of. I just put it my mind that I am different now and people should learn to accept it. My wife who I love completely says that I am not the same.I wonder if we can work through it. I almost feel like it would be better for her and her kids that I left so that they wouldn’t have to deal with all of my fits and yelling. I have also started really pondering the “single life” . Did you go through this too? Please write me at mttcraft27@gmail.com

  11. Matt Craft / Jul 3 2011 7:36 pm

    Email Notification Update

  12. aaron / Feb 21 2012 2:10 pm

    I’m having a hard time understanding the needs of my girlfriend who was in a accident and now has a brain injury. I met here after the fact and now i have learned that is why she is so short fused with every one around her. I really care for the girl and want to be there for ever and ever, but she seem like she is pushing me away and now she is say i never ask questions about her brain injury and try to learn about it. Its not that i don’t want to but that im afraid she will get mad at me for asking to many questions. I figured this board was a good place to start to get some pointer on how ti handle my girlfriends brain in=just and as well to learn about them more

    • Matt / Feb 21 2012 2:54 pm

      aaron, Very nice of you to try and understand. I myself have suffered a brain injury that resulted in a coma. Really from my stand point the only thing that my now ex-wife could have done is be more patient and understanding. My therapist used to tell us…”It’s a funny thing about brain injuries, you can’t see them, so no one knows you are hurt”… If you will understand that she is not being “herself” and be very patient with her that will go far with her. It will take a few years after the accident for her to “level out”. One thing is I used to hate it when I was reminded of the injury. “Matt think about it, you know you’re not right, you have a brain injury”. That used to get to me quicker than anything. Don’t try to make excuses for her to your friends and family. Understand that she, or at least I, had a different way of thinking. The way I went about things made perfect sense to me but no one else. What kind of questions do you have? Email me if you like…mttcraft27@gmail.com

  13. tonya / Mar 27 2012 3:43 am

    hi iam 37years old and i have tbi i got it bye being drunk a stupid i was 24 when it happed and thats all i rember i have no friends to tell but you every sents it happend i became a difrent person i wish so much to be come some one else icant do any thing rite all ways say whats on my mind iam not the same any more iam slow at every thing i do i cant read i can bearly spell everyone thinks iam dum but if they only nue me the person in side this shell they would know that iam realy good person

    • onthemarkwriting / Apr 3 2012 12:54 pm

      Yes, Tonya, Driving drunk is stupid; it’s just that most people don’t have to pay the price you do for their lapse in judgment. If your city has a Brain Injury Association, very often you can make friends there. Support groups are another great place to connect with folks who seem to be more open with their qualifications to be a friend.

      Good luck. Let me know if I can help.

      Mark

  14. D / Mar 27 2012 5:11 pm

    Hey there I am just looking for some similarities if you or anyone has them. I was in an auto accident back in August of last year and I have a head injury, I had constand headaches, I have hearing loss and ringing in my ears. My memory is very strange, there are some days where it seems ok and then there are days where it is pretty awful how can this be? Shouldn’t my memory and my congnitive functions be the same most of the time? This is all new and very strange to me. Any help or comments you can give would be great. I was actually T-boned in a the car accident, they hit the passenger side door.

    Thank you,

    D

    • onthemarkwriting / Apr 4 2012 2:44 pm

      D,
      I’m so sorry to hear that you were in such a tragic accident last August. Although my brain injury was 23 years ago, I find that I am still learning to cope and deal with others in appropriate ways. I haven’t heard of anyone losing their hearing–or having a ringing sensation in their ears–but every brain injury is different. I was in a neuro-rehab with a guy who completely lost his sense of smell. Personally, I think my sense of smell was heightened by my injury. Each one is different.

      As far as your memory–I think that is like a stroke survivor or someone with Alzheimer’s–some days are good, and some days are not so good. Your brain is just like a muscle. If you don’t work it out, it gets weak, but if you exercise–reading, crossword puzzles, word searches, jig-saw puzzles, word games–you will be surprised at how strong and vibrant it will become!

      You might want to look into a website called Lumosity.com. It’s free and has all sorts of games that keep your mind agile.

      Good luck,

      Mark

  15. teresa wilburn / Apr 19 2012 4:55 pm

    thank you so much for the blog.I am so confused daily.I had a brain bleed and clipped in a coma for 12 days. When I got home the next 2 months were a blur,but long story short. Husband who didn’t gry to understand so divorced about a year later.Since then I have made so many un belivable decisions in which I don’t even understand myself. I have had to completely go it alone for 10 years now. As you said all the frineds just disappeared and the family attitude was like oh well.Now I am here 10 years later with my own home and my little dog but cannot figgure out the smallest of things like what to put on and which clothes match.Why I don’t like food in the refriderater,because I want eat it.. etc it goes on and on and on. I had my trauma at 45 and now I am 55 and most days I feel I cant take it anymore. I cry most of the time and keeping the house up and together along with everything is so overwhelming I just loose all concept of reaily. There are no good doctors here. Instead of checking with my brain and what might be rewired different they just shrug it off and say your depressed take this antiderppressant therefor I have take everyone out ther and they make it so much worse..This lets me know that this is not the problem then problem lies between the rewireing of my brain but I cann’t get anyone to listed or do anything about it..All my hope is gone..I have been at my breaking point so many times that I have lost count..

    • onthemarkwriting / Apr 20 2012 2:51 pm

      Teresa – I’m so sorry that you are experiencing the kinds of things you describe. But you need to know that you are NOT alone in your plight. Almost every person I know who sustained a severe BI has or is experiencing these same types of things. I suspect that your husband just didn’t know how to cope with your being different, and it sounds like you were carrying the majority of the marital responsibilities.

      Keep the faith, and may God Bless you.

      Mark

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