14 thoughts on “Share Your Story”

  1. I really like your site. My wife suffered a brain Aneurysm June 1, 2012 and I have been her caregiver. Been tough. Constantly researching information. Would love to have you as one of my links in a site I am trying to launch. Please let me know.
    Thanks
    Joe

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  2. Absolutely Joe – please feel free to add my site to your links. Best of luck to you with caring for your wife. Make sure you get good rest and nutrition – caregiving is one of the most physically and mentally and emotionally demanding jobs you can have, especially when it involves a brain injury.

    Stay strong!
    BB

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  3. Broken Brilliant, Some of my ideas about thinking:

    Sustained attention vs Inattention (aka Growing Up with Inattentive ADHD)

    Posted by Charles Thomas Wild on September 8, 2013 at 4:37am in discussionsView Discussions
    Digit span (three digit numbers vs longer numbers)

    Letter span (three syllable words vs longer words)

    Paying attention

    Attention span

    Working memory

    Hi everyone.

    My brain injury was the result of a non-normal, three day delivery years ago which involved the doctor telling my mother that a single child was expected only to be revised (due to an xray which revealed two bodies) to twins. I was delivered by forceps resulting in a visible brain injury to my head. My twin brother is normal. I was diagnosed with Organic Brain Syndrome which today can also be stated a little more precisely as Inattentive ADHD, auditory processing, and dyspraxia. For some reason I am quite sensitive in a positive manner to coffee, caffeine compounds (Tirend, NoDoz) which temporarily improve (for about 4 hours) large aspects of the following for me: alertness, paying attention, sustained attention, working memory, visualization as in converting a written word into a mental image, and consciousness. In my case, caffeine (as in coffee, Tirend, NoDoz) for me works far better than other popular medicines like Ritalin, Dexedrine, and Adderall. Ritalin, Dexedrine, and Adderall do not work for me but caffeine definitely does. Can anyone relate?

    By the way, I am very aware that I prefer the right side of my body (nominal) to the left side of my body (very slight weakness/very slight hemiparesis). I appear to others to walk normally, however, under certain circumstances such as skipping, hopping, using a jump rope, even turning around in a simple circle, glitches show up. Like many persons with known brain injuries, I look normal.

    Thank you.

    Additional keywords (~ endless):

    Alertness, consciousness, mental energy, energy level, concentration, whole (forest) vs trees (parts), executive functions, nutrition, coffee (works for me a little), tea (does not work as well as coffee for me); slight, temporary improvements; personal initiative vs initiation deficit, attention asset vs attention deficit, etc.
    Tags: ADHD, Attention, Brain, Inattention, Inattentive, Memory, Organic, Sustained, Syndrome, span
    ShareTwitterFacebook
    Views: 131

    http://tbisurvivorsnetwork.ning.com/forum/topics/sustained-attention-vs-inattention

    Thank you.

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  4. I don’t know what to do. It’s been one year since my TBI, I’ve been through many different types of medical procedures and care. Yesterday a coworker reported me for flying of the handle on her. I’m worried about my job and what my future life holds. I can’t concentrate on my work and my mind is fixated on things that don’t matter. I’m a single father of a 4 year old daughter and her sole provider and caregiver. I should be thinking about her and the happiness she brings into my life. Instead, I left work early today feeling overwhelmed and fatigued. I’m always tired and fatigued, yet, I lay down and cannot sleep. I haven’t gotten one restful night of sleep since my head trauma. I’m taking numerous medications but the side effects make life even more difficult. My head feels over filled with noise. I’ve reached the one year mark and not much improvement.

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  5. I’m sorry to hear you’ve been having a tough time. It can be extremely challenging, and there aren’t actually a lot of folks who know precisely how to help us.

    A couple of things that helped me tremendously were being aware that fatigue WILL always make me more irritable. The neuropsych I see regularly calls it “irritable”, but I call it being “hell on wheels”. When I get going, it’s tough to stop it — even when I am aware that it’s a really *bad* idea for me to let myself vent my anger and frustration. And then everyone around me pays the price (and I spend days – weeks – months after the fact paying for my slip-up). The thing is, it’s not real anger. It’s irritability. It’s your brain getting tired and getting frustrated because of it.

    You are in the same situation as I have almost always been — the sole provider for someone who cannot help to support your family. You have a lot of responsibility, as do I. Make a priority of keeping things cool at work – apologize to your co-worker, maybe write a letter of apology for your file, so you’re on record for making amends — but DON’T make the apology about TBI. That would be a big mistake. Just take responsibility and move on. Don’t get all hung up beating yourself up about your behavior. That’s just your brain up to its new tricks.

    As for fatigue — in my experience, there’s not a whole lot that will make anything seem more important than getting some rest. I have struggled intensely with this for a long, long time, and I know it’s no fun. I have been faking my way through being excited and happy and functional for as long as I can remember, all the while being so worn down on the inside. Crazy. But as long as I was functional, I was keeping a job that had the money coming in, and everyone around me thought I was all good, that was the main thing. I put my own discomfort on the back burner and just found ways to push through.

    I don’t recommend it to anyone, but that’s what I had to do for many, many years.

    So, what can you do to help yourself? First, check out the TBI/Concussion forum over at PsychCentral — http://neurotalk.psychcentral.com/forum92.html — there are some folks who have great life experience who can support you.

    I have personally found the following things help:

    1. As much I can… avoid food that wipes me out — junk food, sweets, carbs, diary — it spikes my energy then kills me later. I don’t take meds usually, so I don’t know if that might be affecting you.

    2. Take time to step away regularly from things that are happening and just take a break to let my system settle down. I go for a walk, or I just go into a room with a door, close it, and chill.

    3. Take short naps — 10-20 minutes are miracles of nature. If you can, see if you can get a quick nap when you get home from work, so you can have more energy for your daughter when you can spend time together. Try that one, especially — it works wonders for me.

    4. Say “no” to a lot of stuff that everybody else does — like concerts, movies in theaters, big outdoor or other public events, and running around like a chicken with your head cut off every weekend. You may not be able to do that, because of your daughter, but I’ve found that limiting my activities and only doing the things that are easy and enjoyable has made my life a lot better.

    5. Realize that there will be rough patches when nothing you try seems to work — you just have to push through them, keep doing the right thing, and trust that a better day is coming.

    Some of these things might sound impractical or impossible or unappealing, but trust me — they work for me, and the results have been nothing short of amazing. It’s taken a while, but I now have some hope that I’m not going to be in misery all my live-long days.

    When things feel like they’re crashing down around you, remember — it’s just your brain. And that can — and will — change. You just need to give it time and rest and good nutrition, and keep doing the right things for the right reasons.

    It can get better for sure!

    Be well.

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  6. Amazing posts here. I had severe neurological lyme disease with scarring in brain that i believe left me vulnerable to PTSD in ways i had never been before. Your blog is a real wake up call. So much to read and learn. Thanks so much for putting it all together here.

    Pam

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  7. I was diagnosed with a brain tumor in1994 and as a result had a craniotimy to remove the tumor. Brain surgery causes TBIs and I certainly struggled after that surgery but my seizures because of the tumor and the surgery covered up any disability from tbi… 15 years later in 09 I had the right temporal lobe removed to stop the seizures. Post surgeries had left me with aphasia, memory loss, learning disabilities, to the extent of not being able to work or do much. I never sleep… On bad days I drop everything I pick up and ruin everything I attempt to do. It’s best to stay in bed it go back to bed those days. I have no income. I suffer from depression and anxiety. My life is ridiculous.

    Liked by 1 person

  8. Hi Peter – I’m sorry to hear that. Feeling trapped in a ridiculous experience is crappy on so many levels. Many people feel that way, but you actually have a valid reason. I hope you find some peace at times.

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  9. About two years ago I had a small accident, I was in training, slipped and hit the back of my head on a bench. I somehow also managed to hit my knees, which hurt way more than my head at that time. For about a week (a bit less it was I think) I was not able to walk in straight lines and close to falling down everytime I looked at the sky (or in general upwards) I did NOT go to the doctor (I have a slight fear of doctors and didn’t want to bother my parents with it), went further to training and was happy as my sense of balance slowly regained itself after that week.
    Since I experienced that accident my sense of balance is alot better than directly after the accident but is still not back to it’s normal state. If I stay up for too long and am tired I am not able to stand straight. Apart from that if I close my eyes and try to stand straight it doesn’t work, the only time I realize that I am slowly falling is that the weight on my feet is changing. I am not able to walk in straight lines as long as I don’t have some kind of visual line I can follow. (causing me to constantly bump against people while walking next to them) Neither am I able to stand on some moving objects, on some days it’s better on some others worse, escalators are hard for me to ride on as I am constantly fearing of falling down, sometimes even walking down stairs seems to be a problem for me. If I am looking up and try to stand it’s basically the same as if I close my eyes.

    I also am not able to focus quite well on my right eye (even though I hit the right part of my brain at that time, could be something else as well, I don’t know)

    My sense of balance, my eye and a fear of falling (just very small heights, is slowly fading though) are the only ones that remain somehow damaged as it seems, neither do I have headaches or anything else.
    Since it’s been two years now I don’t think anyone is still able to do something. I can live quite well with it as long as I am not dead tired, my blood pressure is too low or I’ve lost blood (due to blood anemia even just a little makes me not that steady on my feet)
    In general is what happened to me nothing compared to what happened to you or others here, but I still think I should have shared this.
    Thanks for reading it.

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  10. I survived a 65 mph collission into the back of a car, which had come to a complete stop in backed up freeway trafffic about two years ago. No seatbelt. I had previously endured 5 different concussions in a variety of circumstances including getting jumped, falling out a truck and a different wreck, also with no seatbelt, just 2 months prior.

    None of those had effected my cognitive processes as much as I was aware but since the accident life has been difficult since then to say the least. Today I am officially more alone than I have ever been. I work from home, live by myself and am days out from receiving an eviction notice, which is nothing new at this point. It’s been a constant battle to keep utilities on and rent paid so I can work and carry my life of solitude. Sounds morbid but just the way it is unfortunately. I found your blog rather refreshing to remind me that I am not the only one in these circumstances so thought I might provide some additional insight for others which possibly my experience may help as well. Prior to the accident I had a very social life and was heavily involved in social activity, networking groups, etc… Things have changed significantly.

    I don’t mean to write a book on your blog but this has actually been eye opening for me to replay. I hope you do not mind.

    I have been to the support groups and do realize that I have been extremelly fortunate in my circumstances, since I am still capable of dealing with life, to some extent anyway, without having to have a person living with me full time. I’m also able to write this and I design websites for a living, which I was kind of thrown into full time back in November, due to some unfavorable employment circumstances described herein. I was an exception in that sense, for the support group I attended. However, today I just don’t know how people do it. Constant struggle is no way to live and for how my life has been, I can’t even begin to imagine.

    Prior to the accident I had spent the majority of my life involved in custom home sales, real estate, mortgage origination, and had been a business development manager for a high end custom home builder and a building material manufacturer. I’m 28 now and started my first sales management position when I was 19. I had previously passed the real estate exam, life and health insurance exam, state and national mortgage origination exams – all on the first attempts. I had become somewhat used to being a producer and seeing those type of results.

    After the accident, however, my doctor instructed me to take a year off of work in order to minimize the post traumatic effects and to minimize stress in my life. Didn’t seem like the worst advice as I am a natural workaholic.

    I was not financiallly prepared for this year off but I was denied two times for social security benefits because they said I was still capable of having a job, even though doc said no. So I started back in school for web design and development and used student loans and grants to survive. That only lasted for barely a semester until I was about booted out of my apartment and I received an offer to be a sales person for a startup ecig distribution company. I also had a young lady reintroduce herself into my life who I had not seen since I was 15.

    So, a few highlights of how life has gone since the accident, just under 2 years ago…

    The girl who had reintroded herself ended up covering my rent that first month, moving in with me, and I caught her having sex with a guy on my couch within the first month of moving in (probably a blessing).

    I discovered a severe bedbug infestation and had to get rid of literally everything I owned.

    I quit going to school because I had mistaken the ‘S’ in one of the classes I had enrolled for as a summer class, when it was a spring intermission class – and since I missed it had to pay the school $800 to reinroll, which I was and have been unable to do.

    I was still working for the ecig distribution company and had actually been promoted to run the entire sales dept and marketing efforts for the company. In April of 2015 they were raided by the DEA, FBI, CIA, Treasury Dept., and every other branch of govt. known to mankind, as the owner had found himself in a sticky situation. M5’s, masks on, handcuffs, the whole 9 yards. No severance pay on that deal.

    Almost a month went by with no job and as I was on the brink of being homeless again, an opportunity came up to work for my friends father who is a litigation attorney. Seemed like a pleasant change. We agreed that I would be a 1099’d independent contractor as I would help him launch a freight brokerage, build websites for his side businesses and help with a variety of other companies including a car sales / rental company, dispatch services for a different logistics company, marketing for a limo company, various tasks for an oil and gas company and sales and takeoffs for a construction company. That was all gravy but since they couldn’t keep legal assistants to save their lives, while I was at it, I might as well just answer the phone for the law office during the day, process legal case files since I was already there doing that, and at night I could work on the other projects. I did this without fault for 7 months or so, averaging easily 70-90 hours a week grinding away. Then that movie ‘Concussion’ with Will Smith started broadcasting on Youtube. I knew I had been effected by the trauma but it was hard to pinpoint exactly how. I started to research as I was curious about the ‘disease’ mentioned in the preview, and eventually led myself to discovering a support group. The first time I went, the lawyer thought my ‘meeting’ had been a doctor’s appoointment. I clarified that I had actually survived a TBI and went to a support group, as he knew I did not drive but was unaware of the injury. He proceeded – later that day – to inform me I would be working from home for the freight brokerage full time starting that next week. I was ready. To enforce his decision, he had his law office partner quit picking me up for work. After a week of writing contracts, getting forms in place for shippers and carriers and setting up a CRM system, I went to set up the load board for the company and discovered it was not legally even able to carry freight. I had been duped and he owned me money.

    I gave him a couple opportunities to just pay me and he encouraged that I turn him in to the labor dept and if they said he owed me that he would pay. I drafted a letter, had a lawyer review and revise, and sent it in to the labor board. He then responsed with a 20ish page response including a signed affadavit from the logistics company driver saying I had never dispatched a single truckload for the logistics company (absolute bs), that I never worked for the law office, was never required to go to the office, and he actually gave them a copy of a check from an account that I never actually received any money from – to say I never worked for the law office. I had 4 days to respond and spent every waking hour doing that, including 500+ screen shots of text messages, emails of dispatching trucks and provided full access to my email accounts. The state dropped the case and never investigated because they said the said ‘business audits are outside of their jurisdiction.’

    That was last week. I have now tried to pursue with the US dept of labor but they are not taking seriuosly since the state refused to investigate. They didn’t even want me to send in any of the communication or evidence I have of this situation and said they would let me know if they were interested in pursuing. I never received a single paystub and still have not received anypaperwork to file taxes. Corruption at its finest.

    So I started working from home, designing websites wherever I can and doing SEO duties for companies. It’s been a struggle and I’m on the brink of a breakdown. I’ve officially been conditioned to not let people in, stick to myself and am weary about getting involved with any opportunities other than that. It’s no way to live, honestly.

    I don’t know where to go from here but I do appreciate you giving me the opportunity to share this in public. If any employment attorneys who specialize in discrimination and practice in Oklahoma happen to read this, feel free to email me.

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  11. Wow, that is an incredible saga. I’m sorry to hear about all of that, but unfortunately, I can’t say it surprises me. People can be terrible — and when you tell them about your TBI, they really don’t get it. I never tell anyone. I couldn’t hold a job, if I did. I also work in technology, so there’s no way anyone can ever know that I’ve had all those brain injuries. They’d never trust me to do anything. It’s unfortunate, but that’s how it is.
    to
    I tell them I have migraines, which are extremely common, and I leave it at that. Migraines are close enough in symptoms that TBI issues will pass for them, so that’s my approach.

    With regard to your lawsuit, personally I think that if you get any legal help you should focus on attorneys with TBI experience — there are a number of them — or simply move on. Also, designing websites is about the most frustrating work you can ask for. People are impossible, and a lot of them want pictures of kittens and bright colors on their websites to make them “pop”. Heaven help us. I once tried to design a website for friend who insisted that they wanted bright green — everything — so it would be eye-catching. Eye catching is right. And a lot more.

    For remote jobs, there are some different web options — ones where you work for actual companies through virtualvocations.com and flexjobs.com, and then ones where you get your own gigs like at fiverr.com and upwork.com I need to make some more money, myself, so I am considering signing up with fiverr and upwork to pick up some money. My own job is in a potentially precarious position (who’s isn’t?), so I need to take some action, myself. The great thing about web work is that you don’t have to have a certificate to get work. You can put together a portfolio to show people what you’ve done and explain the technologies you’ve used, and people can SEE what you can do. There are a lot of people with certificates who don’t understand the web, and people who hire web workers know that. So, this is something you can do yourself. If you need help putting your portfolio together, Google it and also look at portfolios at fiverr.com and upwork.com. Look for the most popular people there and see what they do — then copy it.

    The other thing I strongly recommend, if you’ve got web design experience, is getting work through an agency that will find you contract work. That’s kept me afloat for years, when I could not function in a permanent job. If you have a portfolio, you may be able to find work. Web designers and developers are always in high demand. And we are a very diverse group, so your “quirks” won’t work against you. Contracts for web work can last from 6 weeks to 3 months, to 6+ months. And because they’re short-term, even if it’s not a perfect fit, the companies that hire you can put up with you for that short period of time — provided you do the work properly. Every now and then you’ll find a contract that lasts a year, but many are 3-month gigs with the option to extend. Get recruiters to find you work — that’s what they do, and they only get paid if you get work, so they are VERY motivated. And the beauty part of it is that you don’t have to commit long-term to them, so if you completely screw it up, it won’t keep you from working later on. I have worked as a contractor for years — especially when I’d just had a TBI (I got them every couple of years, back in the day), and I couldn’t maintain my level of effort for extended periods of time.

    Look at Indeed.com — here’s the link for web designer jobs in Oklahoma City http://www.indeed.com/jobs?q=web+designer&l=Oklahoma+City%2C+OK – just change the location to see what’s there. If you lack any of the skills listed, you can develop them yourself — without needing a class. You just get your web hosting space and practice. I’m “shelf-taught” with books and direct experience, and within 2 years of making the transition to web development from managing support staff at a local law firm, I was making six figures — compared to the $35,000/year I was earning before.

    But again, don’t go it alone. Get a recruiter to hook you up with work. If you have web skills, you’re in a good place — and it may make sense for you to relocate. It sounds like there’s not much keeping you where you are, including housing. You might want to relocate to larger urban areas where there are A) more better-paying jobs, B) more services for people like you, and C) greater tolerance for “neurodiverse” people like ourselves. Urban areas I have found to be much more forgiving of my difficulties. I just blend in with the crowd. Out in the country/suburbs where I live now, it’s harder. People have a lower tolerance for my kind of “crazy”, so it can be very isolating.

    Have you ever reached out to the Brain Injury Association in OK? If you haven’t, I’d recommend you do. They have resources, and may be able to point you in the right direction. You really have too much going for you, to be living like you do. And yes, certain people can and will take advantage of you — the problem is, those types of problem people are attractive to us, because they stress us out — which makes us fee more alive and more alert — and then they wear us out.

    For your living arrangement, you might want to consider finding a decent roommate (not a woman), or finding a job that includes housing. A good friend of mine who’s had many TBIs worked for a while as a groundskeeper at a retreat center, and they got to live on the property. These might not appeal to you — just some ideas. Again, you might want to relocate. I would. It sounds like things are drying up for you there, so it may be time to move on to greener pastures.

    Whatever you do, don’t give in and “let yourself go”. I was homeless for a couple weeks, back in 1990, and I always kept myself clean, stayed where I could (fortunately, a couple friends let me sleep on their couches), and I kept myself occupied. I had a very low-paying job at the time, but it was a job. And the people there really liked me and supported me. I would have slept in the stockroom, if I’d had to. And they would have let me. After a couple weeks, I found a room for rent in a house that was a pretty far piece from my work, but there was public transit, and even though I was still really screwed up from a TBI I had a few years before, I got myself on the trolley each day and then walked the last mile to my work. I actually left the low-paying job for high-paying temp work — where I was making almost twice what I’d been making at my full-time job. You just have to keep appearing functional to other people as much as possible — put on your best appearance — and do everything you can (legally) to make the money you need to survive.

    So, get your resume & portfolio in place and reach out to as many hiring agencies as you can. And consider relocating to an area with more diversity and more opportunities — and more money. You’re a smart, capable guy who has a lot going for him. It would be a shame to have that completely wrecked by TBI. But, of course, that happens all the time, so be strong, keep at it, and get creative with how you make a living. First things first — make the money — legally. If you don’t have that, your options run out.

    Good luck – let us know how it goes.

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