Ruminations of a high-fuctioning mtbi survivor

Okay, so this post is purely self-serving, in that I need to remind myself that I am indeed a high-functioning mild traumatic brain injury survivor, who has managed to build a pretty incredible life for myself and my family, despite my injuries at age 7-8 and three years ago at age 39.

I’m in the job market again, and I’m looking at my job prospecting with a whole new eye — keeping tabs on my stressors and trying to navigate the world of recruiters and headhunters, who are all so incredibly DRIVEN and don’t give themselves, let alone me, a chance to breathe. Take a deep breath, folks. Honestly…

I’ve been talking to headhunters, on and off, for a few days, and they’re starting to make me crazy. All that go-go-go stuff and the constant pressure to schedule something with them… to make it happen… make it happen! Can-do shit and all that. I have to admit, I’m a bit tired of all that pushy crap, and it’s making me antsy and short-tempered. I actually snapped at a headhunter today who was just pushing too hard. People can’t push me hard, anymore. Not anymore. No thanks. Give it a break.

Still, one must work, one must earn money, one must pay the bills… If only I could find a job I could do from home, instead of going out into the world. I’ve been thinking I really need to work for a company that can offer me structure and reliability and some sort of regular schedule. I’ve been in and out of the regular job scene for a while, back and forth to a part-time job and futzing around for the past year or so. I’ve been thinking that I need more than that — more structure, more involvement…

But the more I talk to people in the working world, especially recruiters for technology companies, the more it gives me the willies. And I don’t relish the idea of going back to a 9-to-5 position. Especially if it involves driving an hour each way. Just too much.

Especially since I’m starting into dealing with this TBI stuff. I really don’t want to have to put my diagnostic testing and rehab on the back burner, while I try to figure things out. I don’t have an unlimited amount of money in the bank, so something must be done. But really, I’d prefer to work at home… telecommute. Work remotely. Not have to go into an office.

Better yet, I’d prefer not to have to work at all.

But that’s not really in the cards, at this point. Unless people buy so many of my headache journals that I can retire. Or they purchase more of my writing/research/resource guides. That’s always a possibility. A slim and distant one, but a possibility, no less.

But seriously, folks, there must be a better way for tbi survivors to make a living, than having to schlep into an office and be surrounded by people who neither understand nor care about your condition. I’ve worked with disabled people before, and while our employer did accommodate them, and they were great friends with everyone they worked with, the simple fact is, they had to work like the dickens just to get by “normally.” And while people did help and reach out to them, there was always that undercurrent of pity that makes my skin crawl.

I just can’t bring myself to “play the disabled card” as a tbi survivor. I’m still up in the air about whether I’d even mention it to an employer. I certainly will not mention it to consulting clients. That would totally work against me, I believe.

I just need to keep it to myself, unless there’s an expressed need to let people know what’s going on. I guess it’s all in a day’s work for a tbi survivor… trying to figure out how to navigate the working world. Or the world in general.

But I don’t think I started this post to bitch and moan about my job situation… where was I? Oh, yes, now I remember: ruminations of a high-functioning mtbi survivor. That means I’m supposed to focus on my strengths, I suppose 😉

The oddly conflicting fact of the matter is, being a high-functioning tbi person can make things all the more difficult, because if you don’t “present” like a tbi person (like me), it can be pretty difficult to get people to take your limitations seriously. I’m having a getting-to-know-you meeting with a counselor who’s seeing a friend of mine, who’s really struggling with my newly discovered tbi status. This counselor knows a bit about tbi, and they don’t think I look or act like a tbi survivor, whatever that may be like. So, I need to sit down and explain things and hopefully elucidate my situation.

I’ve invested a whole lot of time and energy in making sure that nobody, but nobody, realizes I’ve got a disability, and now I have to sit down and explain to someone how my front is often just a front, which makes me a fraud and a fake, I suppose, on a certain level. I’m not nearly as smart as I pretend to be. Or as quick. Or as inspired. I just do a great job of imitating someone who is. Or maybe that makes me a highly resourceful survivor extraordinaire, who just doesn’t want to miss out on life and sucks at self-assessment, so they can’t see that they’re not quite as smart/quick/inspired as they think they are.

It’s all very confusing, and I’m not helping myself any, right now. I’m actually very tired. And stressed. And worried about these interviews I have coming up over the next few days.

Just remember, on the internet, nobody knows you’re a dog…

Technorati Tags: brain damage Brain Injury cognitive-behavioral issues Emotional Fallout Family Issues Head Trauma journal Mild Traumatic Brain Injury military Motivation and Inspiration mtbi Neurology Neuropsychological Effects of TBI neuropsychology Personal Experiences with TBI psychology psychotherapy rehabilitation Social Issues TBI Physiology TBI Rehab TBI Resources tbi survivor TBI Symptoms tbi traumatic brain injury

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 “Ruminations of a high-fuctioning mtbi survivor”

  1. I have been studying and working in PTSD for 20 years. Not until 2004,
    when I read a book by a friend,”A Terribile Love of War” by James Hillman did I realize the effect PTSD had on me. I had reead and worked on many aspects of healing and found some sucess in aliviating some of the stress, throug nontraditional means.
    Hillman’s statement ” PTSD is in the dictopnary, but trauma is in the body” has started me on a new path.
    I believe TBI is not just the working aspects of the brain, but the sum and total of the entire experience of the body. Reacting from the reptilian aspect of our survivial mode. I offer this as a thought, not a learne position. I have found my nontraditional approach works in many cases.
    I feel totaly inadiquate in working with you new combat troops. You are
    the Best we have ever fielded and it is humbling for this older man to offer help. I hope someday to be of assistance. MY apperciation for all you troops have done, your deeds bring memories and tears. WADR chuck

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  2. Being a high end thinking, TBI survivor since 1993, with constant head pain, tinnitus, cognitive deficits and other unpleasant symptoms and medication side effects…. I GET IT! =-}

    Anybody listening? We need a new look at the long term effects of TBI on us all. In the meantime, hang on to your self esteem, love, courage and patience but most of all perseverence!

    Keep mum, but shout it to the world!!!!!!!!

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  3. I second and third everything written here. If God is a big jokester in the sky, I see the irony, I see the ridiculousness, I see how everything I thought I was and am not now wasn’t really all that important but I still don’t see my way through this world. My TBI occured 26 years ago, complete with anosognosia and no one, not even doctors, explained to me that I had sustained a brain injury. I am fortunate that I have been able to survive without working but for someone who is rather “A” type and who has a driving need to “succeed” this life has not been easy.

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  4. What is it with doctors, that they don’t always feel compelled to explain to us what has actually happened? I don’t get it. They want — and expect — us to come to them for help, but then when we seek them out, they refuse to volunteer even the most basic of information, so we can understand what the hell happened to us.

    I just don’t get it.

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  5. While my TBI was mild, the devastation it took on my life was not – including driving me into poverty. I have long been a champion now of redesigning treatment approaches to focus more on real world issues for TBI survivors, including how to manage finances, get REAL employment that works – that is, that supports a person/family and that makes them feel real and productive and used and where they can be successful. For all the 1000 of dollars that social service systems are willing to throw at people to keep them barely surviving (and not even) they could provide realistic skills enhancement to open new doors. The whole process of employment and TBI is a nightmare as it stands and I get furious about it.

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  6. I couldn’t agree more. I count my blessings every day, that I have been able to learn technical skills, and that I have found a line of work that lets me interact with machines more than people. I don’t know where I’d be without this — probably standing in an unemployment line, right about now. I am tremendously fortunate. I’d be interested to hear how you — and others — think this can be remedied. What sorts of skills do you think would be useful for TBI folks to acquire? What sorts of job training programs? I can think of some, but I’d love to hear what others have to say about this.

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  7. A key element to rehab is a team approach so that a person can be assessed and supported from a variety of views – physical, group, occupational/vocational, cognitive, psychological, etc.

    Many models for rehab use this approach and they frequently have a caseworker who is sort of the person who organizes the whole process – but it seems that a caseworker is assumed to be looking at your life circumstances – and they don’t.

    A key element that needs to be looked at is who you are in your life, what you have been doing professionally, are you the support of your family, what resources will you have available financially etc.

    Then this needs to be combined with all possible social service options available – with as much effort put forth to receive proper supports early on – including filing for disability – I thought I would return to work in 2-4 weeks – its been 4 years – and I kept saying “I don’t need disability” – but I did. It might have saved me a tremendous amount of struggle.

    Not only should social service options be utilized but also funding for assistive technology, educational grants and loans etc. It may even be a valuable thing to have a financial advisor who can give people guidance when it comes to cashing in 401ks and things like that.

    But those are protective measure, particularly when the bread winner is injured and children are involved (and there is no other resource) – but the real goal is productive and self-supporting.

    Rehab programs should be tied into volunteer opportunities – not ‘mindless’ opportunities but work which presents real challenges. These should be selected with the guidance of a professional career coach, a person who looks at cognitive skills, education, income needs, past income, individual wants and preferences, personality, and deficits etc and tried to place a person so that they are challenged but not overwhelmed. A vocational therapist can work with the person to establish strategies that might be needed, how to handle situations. However the person is expected to do REAL WORK – produce, meet deadlines, get things done. IF they cannot they might need to step out of the program or go to another position.

    This can start out part time and move to full time and/or it can be combined with some supplemental training program. But I am talking real training skills – in things like grant writing, or utilizing certain software programs, learning ICD-9 codes for medical organizations, etc. These training programs usually take no more than 9 months and cost approx 2500 tops. This is cheaper than welfare, food stamps, free medical care, etc. And it saves lifes, self-esteem etc.

    The problem with many (some) folks with TBI – myself included – is that I was on a contract position – when I was hurt I lost my job and there was nothing to return to. Plus the there was no way I could have returned to that job given my issues. If you have a job where you have worked for a long time they might be more accepting and supportive of your return and make allowances for job supports etc – but try finding a new job and saying ‘oh, and I need accommodations, need to leave for 2 hours on Mondays for my support group, need a private office so I can focus, and please no stress…… – right. So I need to walk into a job knowing what I might be facing in terms of what my issues are and what I can do to address them. I need to have tested the waters and also have a concrete skill set that I am comfortable applying. My multi-tasking managerial functions MAY not be so great in the beginning (or ever).

    Turning over a TBI individual to state vocational rehabs doesn’t work because they are a) overwhelmed and b) don’t have the tbi team knowledge to address the individual. Plus so many of the jobs are really not appropriate.

    I would also work to have rehab be very aggressive and frequent even in the beginning – yes, it is hard but if done right (that is gradually building up, insuring that they get rest etc) then it can be empowering.

    Because ‘the system’ didn’t know what to do with me the level of stress and anxiety in my life was exacerbated 1000 fold – which makes my ability to manage the tbi related issues harder – and makes it harder for me to use strategies etc.

    We tend to use social services to fix what is broken and I want to prevent things from breaking worse.

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  8. Sounds like your situation might be making your father nervous, himself. That’s often what happens with TBI — people who know us get really freaked out, and they wonder (if we appear to be so normal), what “normal” really is… are THEY normal? How can they tell? Maybe they’re “brain-damaged,” too — seeing as a lot of people have gotten clunked on the head. They get scared and they block out what scares them — including us.

    Not fun, but it happens.

    Good luck.

    BB

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  9. I am the mother of a 44 year old that really is only 17. that being the age when his injury happened.

    My issue is that for many years all our efforts went toward having him fit into the world and leading a “normal” life. I think we achieved that.He has developed very strong “Coping Skills” After his accident my son finished high school, mostly on his “before” merits. He also attended 4 year collage and graduated with his class. Quite an achievement. Then he moved out of the Area and the only contact we had was occasional phoning and some vacation.

    When he got married my place was entirely taken by his wife and she was informed and accepted him (it seemed) 10 years and 2 children later she had enough and wanted him out of hers and the children’s life. for good.

    The problem now is he can’t move on. He now lives with me and I find out he is not the son I raised. I had no idea who this person is.

    I had to learn to understand the extent of his disability and it is very disturbing.
    Are there any support groups out their. I feel I am the one needing help more then he does. His world is normal. His evaluations of himself are “there is nothing wrong”. HELP

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  10. It sounds like there are two kinds of help you need — one for your son and one for you/his family. There are support groups out there. If you are in the Los Angeles area, there is Give Back LA –

    GiveBack Recovery Group Meetings are free. 1st and 2nd Wednesday of each month from 6:30- 8:30 pm
    Claremont United Church of Christ in the Louise Roberts Room
    233 Harrison Ave
    Claremont, CA 91711
    Week 1: Community Meeting
    Week 2: Recovery Workshop

    If you are not in the L.A. area, call your local Brain Injury Association (BIA) chapter. They may be able to help you find support group meetings. Sometimes brain rehab facilities offer support groups, but one group I went to was “soft marketing” for the facility — they were looking for new patients to admit and new business, NOT trying to help people be independent. I ran from them very quickly.

    With regard to your son’s problems —

    It is VERY common for family members to not realize the extent of their loved one’s impairment — especially when we love them. We can become blind to the real problems, so don’t be too hard on yourself for not realizing this. Your son may have actually gotten stuck in some old bad habits in his years away from you, which nobody was willing to address on a regular basis.

    With TBI, we need regular, continuous feedback about how we are *really* doing – from an objective and non-judgmental source. We need to be able to talk things through with someone who can look at things from a detached point of view and not jump to the worst-case scenario when things are tough. This is very difficult for family members to provide, because we tend to not be objective, and how we see ourselves is often closely related to how we see our loved ones.

    I have found that in my own life, before I started talking with a neuropsychologist, I tended to see the fault with others and blamed others for my TBI issues. Then when I started talking with an outside person, I could start to look at my life in objective ways — Did I achieve what I wanted to achieve? If not, what might I have done differently to help myself?

    There is a fine line between finding fault and finding solutions to problems. It is an important line. Learning how to see your life as a series of puzzles or challenges to be practiced and mastered is very different from seeing your life as a series of problems you have to deal with. None of us is perfect, and if we stay stuck in finding fault and blame, then we are stuck and we have a harder time finding better solutions.

    For your own situation —

    It is important to understand how the brain works and what happens with TBI. Give Back LA has some good information for family members at http://www.givebackla.com/?cat=192 — I encourage you to read it and learn more.

    The problem with TBI is that it is invisible, and it disrupts the parts of us that everyone — and I mean EVERYONE takes for granted. It is impossible to see what exactly is going on “in there” so you have to look at the circumstances and understand that your son may not completely understand the extent of his problems — or the true nature of them.

    What has worked best for me has been to just talk regularly with someone about how my life is going, what is working and what is not, and then find ways to do things differently, so that I can do things better next time. It is very basic, but it’s so important.

    Don’t lose hope. I think you can find help from your BIA office. And if the first person you talk to is not helpful, try calling back and talking to someone else. There are support groups out there, in person and online, so reach out. You already know you need help, so that’s the first and most important step.

    Best of luck to you and your son!

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  11. I know this is an older post but I just found it. I’ve been a tbi and ptsd survivor for over 20 years. Because I’m “high functioning” parts of my family think I’m faking it. I can’t stand the ‘support groups’ they have here for tbi because I’m so high functioning I end up getting cornered by most of the lower functioning community and they tend to tell me in GREAT detail how they got their brain injury over and over and over (which doesn’t help my ptsd at all). I’ve had my tbi for quite some time and I still haven’t figured out how to make it in society working. It drives me nuts because how can someone be as intelligent as I am and well versed and not be able to keep a full time job? I have two degrees. I am currently in SW Missouri and I have decided I need a change, a fresh start if you will. Being on SSDI doesn’t afford me much and I need assistance in moving and affording the move. I will need supports once I’m there. I’m not naive enough to think by moving my problems will go away. I just need a fresh perspective and a chance at life.
    NFP organizations around here don’t seem to offer much for “higher functioning” people which is frustrating because the services they provide are very important. I need real assistance and I’m at my wits end. I’ve tried contacting a few other cities/states and it doesn’t seem that the services they offer are much better than the services here. I haven’t gotten any return phone calls or emails.
    Recently I lost my house of almost 20 years. I am currently “between homes” and have no employment. I do have dog I trained to be my service animal but most places around here with housing won’t accept service animals. I did finally get her registered as a service animal but don’t have an address to give them to send it to. When I had my own home there was no need to have her registered. Is there any advice anyone can give me on this?

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  12. I just emailed you – tho’ my email has been acting up, so I’m not sure it will go through. I passed along some info that might help.

    It is very frustrating to be in such a bind. It’s just not good. I hope you can find some resources to help you. If I think of anything else, I’ll pass the info along.

    Best of luck – hang in there.

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  13. Thanks so much for sharing this. I’m totally in the same boat as you! It’s so incredibly hard sometimes, but I find that as long as I take it day by day, adhere to my boundaries, and don’t care what other people think I should do (of course all of this is REALLY hard), I get by. Day by day, step by step. And I sympathize with the reality that you can’t be pushed beyond your limit! But we can do this! 😉

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  14. Thanks for writing – yes, it’s always an adventure, that’s for sure.

    Each day is a gift, really. I have to keep that in mind, and keep positive as I move forward. It’s never easy, but it can be done. You and I are living proof of that, I believe.

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