Beyond the stigmas of brain injury

I’ve been thinking a lot about why I keep this blog. Someone who’s been a reader here for a while has commented that I spend too much time over-analyzing and thinking about brain injury, and that I should just be thankful for what I have, live my life and get on with it.

That’s been a challenge for me to digest, probably because there’s some truth to it. It’s partly true that I do spend a lot of time thinking about brain injury and how it affects me, and sometimes it keeps me from just living my life. At the same time, one of the driving forces behind keeping this blog is the deafening silence out there about brain injury, from a personal point of view. When I first came to terms with the fact of my history of TBI, it was all but impossible to find *anything* personal about TBI — there were just a bunch of “scientific” sites, many of which were selling or promoting something — with objective, impersonal information.

And I felt completely alone.

I still feel alone, but a lot less so, since I’ve been blogging about TBI. Something about just writing this all down and putting it out there, is not only cathartic but also helps me put things in perspective. I don’t have many friends or social interaction outside of work — I get too tired to maintain friendships for any length of them. And I don’t keep in regular touch with my family, in part because they exhaust me with their attitudes and their choices and their drama.

More than anything, fatigue has changed the face of my life, since I fell down those stairs in 2004.

And there doesn’t seem to be any relief in sight.

But I digress.

One of the things that a few people are saying that I really agree with, is that it’s not concussion/TBI that’s the problem. It’s mismanagement of concussion/TBI that gets us in trouble.

The Concussion Blog is one of those places where this is talked about. The blogger/author there talks about management from the perspective of an athletic trainer. And I talk about managing TBI/concussion from the “inside” — the personal perspective of someone who is dealing with TBI on a regular basis. I do this because I want to demystify the world of concussion/TBI recovery and put human face on something that usually pulls people into the shadows to hide “until they’re better”, which doesn’t happen nearly as often as we’d like.

When it comes to TBI, there are tremendous stigmas attached. Not least of which comes from inside our own heads. We become different people. Our lives can be turned upside-down. It may look like there is no end in sight, and we can lose hope. Simple fact of the matter is, it is not easy, dealing with TBI, and that’s just a fact we need to accept and work with.

For many, this can be tremendously unsettling, and we may want with all our might to just put it behind us and get on with our lives, not worrying about what was before, but trusting that we will get the help we need as we go on. That help may be from within, from God, from family and friends, or from an agency or rehab. We don’t want TBI to stop us, and we want to just have the best life possible, without staring at our navels all day long.

For others, the many phenomena around TBI may be a source of fascination, even compulsion — some might say obsession(?). When something nearly takes you out, and it’s so big and undeniable, it can be a source of intense scientific interest. Sometimes people turn to studying the very thing that nearly killed them — like people who have close calls with snakes or sharks or other threats as kids, and then become scientists who study them.  I fall into that category — especially because I was raised around scientists and I grew up spending a lot of time with my grandfather, who was a college professor in natural sciences.

For other people, they may never be able to put TBI behind them, and they may struggle for years and years — alone, misunderstood, discriminated against, and marginalized… and never fully understanding why. It’s my hope that some of what I write reaches those people and helps them feel less isolated and alone. Life can be rough on all of us, and TBI folks especially.

The biggest problem that I can see is the isolation and the feeling that nobody understands you, nobody can help you, nobody gets it, and you’re just a freak who’s good for nothing. When you feel that way, it’s easy to let others marginalize you and mistreat you, which does not help your ability to self-advocate and get the help you need. And it just feeds the vicious cycle that pulls us into the progressive downward spiral of TBI. So things can get a lot worse, before they get better. If they get better at all. What happens inside our souls after TBI, can be even more harmful than what happens inside our heads.

So, if I come across as egotistical, self-consumed, and perseverating… it’s all in the interest of being real about my own condition. I don’t want over-analyzing TBI to stop me from living my life — and in fact, it doesn’t — but I also don’t want to pretend that everything is hunky-dory and there are no issues in sight. For years, I was totally focused on barrelling through all the hurdles along the way and leveling every barrier to my success. But lately, I’m just too tired to keep up that charge. And I’ve got to get real about my situation.

So, that’s it for today. I hope it has done someone somewhere some good.

Onward.

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Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

17 thoughts on “Beyond the stigmas of brain injury”

  1. broken brilliant, when i read this, blog i get raw authentic feeling. To a tbi(s) survivor that is our only way back to a life that matters. I’ve accepted this existence and reading your blogs takes some frustration away and allows me to accept life on life’s terms more easily and even live a little w/out the preoccupation of the condition!thank you!

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  2. I read your blog regularly because you are the only one who tells it like it is for me. I relate to every thing you write and I don’t have it in me to describe as well as you how my multiple TBIs affect me. You put in to words exactly how I feel! Please don’t stop.

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  3. Thank you for having a site that others with TBI can identify. Others need to know what they are experiencing is not unusual and they also need to know ways to handle things. You offer it all! If every day were predictable there would be no reason for TBI survivors to be concerned, but as you know every single day is unpredictable, as from moment to moment … so when life is unpredictable in every aspect, every day it’s impossible not to be focused to help others surviving TBI.

    It wasn’t until your last TBI that your life changed so drastically. Up until that point you compensated without such a great struggle. When the struggle becomes so insurmountable that’s when anyone understands TBI! You are a fantastic educator of TBI and through your writings it can help everyone understand TBI and get support … something that rarely happens otherwise!

    On a personal note, I’ve been so overwhelmed this is my first visit in weeks and I’m hoping to get back to writing but none of us know how difficult TBI is until they have one. Again, keep on writing and we are all learning from you and your experience. Take care and stay safe.

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  4. Thank you for your words. That is what I am aiming for, so I’m really glad it’s coming through. The main thing I want is to be real — in the midst of a world that can be very un-real. And I also want people to not feel so terribly alone. This can be such a lonely situation for so many. Have a great day

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  5. Congratulations! You are doing great and I appreciate your writing about what is going on in your life. Keep up the good work!!!!

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  6. Thank you for over-analyzing and over-thinking the effect multiple concussions have had on your life – and mostly – for having the courage to share the uncensored results with your readers. Your raw honesty, encouragement, and education have made a very positive difference for me as I struggle with the aftermath of my last concussion (2004). God bless.

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  7. Your blog has helped me a lot over the past few years. It helped me to return to active faith in God- you see before my initial brain insults some 25 years ago I had close relations to what I knew was my reason for being on earth. Brain injury takes away so much in so many different ways. For me I was able to write cohesively rather quickly but my handwriting was of another person’s. My speech felt foriegn for years but i only actualy has trouble producing speech for about a day after the come. My procedural memorial was decent as a trained teacher I was able to enter a classroom directly from the homeless shelter and I did fair with teaching mechanics. I went on automatic pilot one day and said to myself “I’m a teacher not a homeless man” I asked for yellow pages and made the call to what turned out my job. A school within walking distance from shelter. One sub day and I was offered a job. The exelcior house workers were not as happy as I had expected. “You can’t do this” Shelters are for people in need, you must go”. As my daughter twenty years later would say I was “clever but clueless”, I was totally clueless in how I had been perceived. I believe now that in this fist shelter at least that they saw me as someone who probably just didn’t have money for a hotel and was using the system.
    But I felt like I was without the same soul. I could feel compassion for students but I felt loss or an actor only around staff or students. I,d get lost trying to find room 7 and stand confused in the hallway. The kind sister who was aware that she had taken me out of a shelter to work, believed that what I needed was a good living situation, clean clothes, and a commitment to sobriety. (She concluded that drinking was my problem and maybe because I told her it was-wishful thinking.) Well, St.Cathy was a servant of god inclined to action or ogres, and solution based thinking. Within a week I had collection money convert to a shirt and tie, a bottom floor of a church members house in a nice town, and a commitment to AA in Hermosa Beach. I held my end of the commitment attending meetings regularly, sober dances, and working on outreach community receiving calls on behalf of AA. I found myself crying all the time but I was not sure why. I knew to conceal that. I knew to call my mother that mother’s day but I felt as if we had no past. I had lost all of NY prior interests. Never realizing that my once held favorite sport was thriving in LA. (Never attended one match of the several world cup matches held in 92) Never saw a kings hockey game. (19 years in LA) I had been a huge ice hockey fan. I tried to date a few times that year and was either pitied or laughed at. Fatigue was the worst of all symptoms as I laid on a floor most hours that I was not in aa building or working. Soon I realized that I had a new previousunknown talent and interest, a foreign language. With little effort, I passed the Spanish bilingual verbal written exam to be able to teach in content areas in Spanish. But my work suffered as I barely hung on that year with sister Cathy. This extremely patient and caring lover of God was rightfully frustrated as she said annoyedly that she did not understand me. She said that I acted like an adolescent myself. “You’re squirrely”, she said. I found myself staring a lot in coffee shops for hours. And listenning to Anne Murrays “wintry feeling” over and over again. The landlord stood by me as I woke up screaming for months and very nervous by day. He would prove to be one of those Christians that you never doubt what makes tic. Unfortunately after 11 months totally clean, a wise woman took me to the side after a meeting and urged me to look for another kind of help. She also said she was respectful of me and very much wanted in the group. The help that I would eventually get focused on my prior history of depression and I began antidepressant treatment. Before long I was manic. I had about 12 stays at ucla harbor and they sell tried so hard to help. Somehow my head injuries even the coma experience was never really brought to the table.I was clinically depressed PTSD and later more unstable in moods. Even the few people who stood by me and saw first hand the obvious sufferring all those years, think that my talk of TBI is a form of denial of a longstanding diagnosis. Thanks Bb for your blogs.

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  8. And thank you for writing. So much of what you said sounds familiar to me — looking one way on the outside and feeling another way on the inside. I try to explain it to people, and they say, “Everybody feels that way, now and then.” But all the time? Like you have crossed a drawbridge, and someone pulled it up behind you, and you can’t get back. Or worse, they set it on fire, and there is no going back.

    Sometimes I get a lost, too. I forget where I am — it happens now and then when I am driving or walking somewhere. I just keep going, trusting that sooner or later I will recognize where I am. Or I can stop and ask someone, pretending I am from out of town.

    One evening, I finished a very busy day full of a lot of activity, and I could not remember what I had done that day… after a few minutes, I remembered, but it took some reminding. And it scared the person I was with. Because who wouldn’t remember the kind of busy day I’d had?

    I’m glad to hear your faith has returned. Before my TBI in 2004, I was a very “spiritually connected” person, but after that, it’s like the slate was wiped clean and I had no more faith and no more interest in getting it back. It’s like it just evaporated. I have some faint glimmers, now and then, of my former connection, but it doesn’t really last. And I can’t say I miss it.

    But I do miss feeling like I should miss it. If that makes any sense.

    So, anyway, it has been a long time for you, and you have walked a very long and winding road. I am glad to hear that you have found help along the way and have found a path to follow.

    Be well. Stay strong.

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