TBI Issues Tracking – How I Keep It All Together

For the past year, I’ve been working regularly at figuring out how to effectively identify and manage my TBI-related issues, both from the past and the present. I was keeping a journal on a regular basis, which was helpful, but there was something missing. I needed another tool to help me keep track of what was going on with me — in an objective and fairly brief way.

In my search for information, I paid a visit to http://www.headinjury.com and found their Journal of Daily Experiences. It was just what I needed! I printed out a copy and started using it, tracking my daily experiences and realizing that there was actually more going on with me than I had believed. Only when I really asked myself honestly if there were certain things going on with me — like irritability and anxiety — was I able to identify and address issues that had dogged me for decades, but I’d never been able to either identify or cope with in a constructive fashion.

I used the form from the website, but I eventually found it was too long for me to make sense of, and it was hard for me to get my head around finding each issue that was giving me problems. I needed something more organized — and something that gave me more space to write in. I had a lot to write, and I was having trouble fitting my words into the space there.

So, I copied and pasted the table on the web page into a word processing document, reorganized it with categories, and I changed the wording a little bit. Since it was in electronic format, I had plenty of room to type in my information. I didn’t run out of room.

I also wanted a version that I could print out and write on. Writing by hand is an important part of my regular recovery (it forces your brain to work the hand-eye coordination parts, as I understand it), and while typing into the word document was easier, sometimes I really needed to write the stuff down. Sometimes I needed to record things without a computer.

So, I created a PDF version — with a nice picture of a head with a brain on it, so I could keep track of my headaches, which are pretty much constant.

I have used my form(s) to record information both about my childhood (to see what problems I had) as well as recording information about my daily life. Both approaches help me a great deal in understanding my situation and formulating approaches. And I have written records of what works (and doesn’t work) for me in my daily life. Tracking my childhood experiences really helped me deal with the emotional baggage of what was a very challenging upbringing, and it helped me put a lot of my “badness” in a context I could understand objectively, without constantly blaming myself for my temper, my outbursts, my perpetual flipping out and beating up on my little brother. There was more going on with me and my head, than anyone knew. And I’ve paid a huge price, my entire life, thinking that my very nature was “bad” or “sinful” or “flawed” or “lazy” or “evil” … when so much of my behavior and performance problems read like classic TBI after-effects… and can be directly traced to them.

I wasn’t a bad seed.

I was injured.

And I never go the help I needed.

That doesn’t change the harm I’ve done over the course of my 43 years, but it does allow me to identify some of the true cause(s) of my problematic behavior and either take steps to make amends, explain myself to the ones I’ve hurt, take steps to make sure I don’t do those childhood things in my adulthood, and/or better understand what was really my fault, and what was TBI-related.

I also currently use the form(s) for day-to-day self-assessment. It may sound simplistic, but just recording my experiences on a regular basis has made a huge difference in managing my symptoms and issues. If I don’t self-assess at least once a week, I actually start to feel like I’m losing my mind… I feel like there’s something wrong with me. I feel defective. I feel useless. I feel like a total friggin’ loser. I don’t always fill out every single piece of the form, but I at least hit the high points, and that helps.

When I look at my issues in light of the tbi’s I’ve sustained, and I see that these symptoms are originating from an injury — not a character defect — it takes a lot of the pressure off. Self-assessing and tracking my issues reminds me that it’s not me that’s compromised (tho’ I must admit I have plenty of flaws that have nothing to do with tbi 😉 — it’s my injured brain that’s the root of a lot of my issues. And since I know the source of the problems, I can get outside myself and take steps to address the issues I come across.

And that makes all the difference.

I’ve uploaded the two files below for your use. I hope they help you as much as they help me!

Daily Experiences Journal (Wide) – Word Document

Daily Experiences Journal – PDF for printing and filling in by hand

Basic Facts about Traumatic Brain Injury – Video from www.brainandspinalcord.org

I came across this today and really enjoyed it. It’s short, concise, and to the point.

http://www.brainandspinalcord.org/media-center/FactsAboutTBI.html

I tried embedding the video in this blog, but the code the site generated wouldn’t “take”. So, pay a visit to the site yourself and take a look. There are other videos too that I found helpful.

Checking my stats from the past few days…

One of the things I really like about WP vs. Blogger is — I get better ideas about how people are finding me here.

I’ve been looking at how people find this blog, and I’ve found the following searches recorded by WordPress:

  • polytrauma
  • i’m a tbi survivor
  • interview doesnt go well
  • caffeine and mild traumatic brain injury
  • “losing track of conversations”
  • anxiousness lack of appetite trouble fal(ling asleep?)
  • losing one’s mind in injury to the brain
  • tbi ptsd
  • how do you know that interview did not g(o well?)
  • mtbi blog

Apparently folks are looking for information about jobs and brain injury and ptsd, which is right up my alley, since all three of these are very interesting, important and pertinent to me.

About PTSD, I have to say that just living each day as a TBI survivor (even a mild one) can be traumatic in and of itself. We live in a culture that doesn’t understand the issues, even though it’s impacted daily (and in very violent and extreme and negative ways) by TBI’s of all kinds. Tons of people have car accidents, experience whiplash, get knocked in the head. Lots of kids hit their heads during sports matches and are never treated. Battering and domestic abuse causes brain injury, as well, not to mention fights and brawls and drug/alcohol related incidents. And then we have the falls… don’t get me started.

That being said, dealing with a world that is impacted by TBI can introduce all sorts of trauma — from dealing with folks who have had injuries themselves, but don’t realize it, to dealing with people who have been victimized by TBI survivors and are “triggered” by your demeanor and/or actions. Also, when you’re living with a hidden disability, there’s the danger of over-extending yourself without realizing it. We live in a very go-go-go culture that’s not big on getting enough rest and eating right, so when we’re fatigued, we TBI folks can make poor decisions and do things we really shouldn’t – like driving too fast or too slow… like taking risks we normally wouldn’t. And that can lead to yet mor injury, in my experience.

TBI is much more common that most people realize, but because it has to do with the brain, most folks are just plain afraid to approach the subject. But knowledge is power, people. And what we know can really help.

It can also really help therapists or folks who are treating ptsd — there’s not nearly enough experience and education with regard to tbi in therapeutic circles, in my opinion. I think there may be a reluctance to factor in neurological issues, when doing psychotherapy, which is understandable, as neurology is a somewhat esoteric field — especially for LICSW’s and MSW’s and other sorts of counselors who don’t have medical backgrounds. But it’s really, really important to realize that tbi can — and often does — play a part in certain issues. So that the real problems can be addressed, instead of trying to track down the emotional root of some issue that’s actually neurological/physiological in nature. I cannot stress this enough. I could write a whole book on this important issue… and maybe someday I will.

With regard to coffee and tbi — I was being evaluated by a neuropsychologist a while back, and when he found out I’d had some coffee, he cut the session short and told me the results wouldn’t be accurate. So, measuring the performance of the brain on caffeine is not accurate, apparently, which tells me that caffeine may cause the brain to function artificially well. Or it can skew the performance in some way. That tells me that while coffee may be useful to me as a short-term solution to fatigue, ultimately, it may cause me to have “false” confidence… and possibly lead to more poor decision-making.

losing one’s mind in injury to the brain… Yes, sometimes it feels like it can happen. But learning about tbi and recognizing what’s “just your brain playing tricks on you” can go a long way towards easing the stress. I have found that the first step towards dealing well with my strengths is recognizing my weaknesses and learning not to step into those holes. It’s like walking down a dark, rocky, washed-out path over and over again… until you realize where the rocks and holes and roots and gulleys are, you’re going to keep stepping in them. Best to find out where they are, so you can walk around them and stop injuring yourself. You don’t have to be down on yourself about it, you don’t have to beat yourself up about it. Just learn where you’re less than perfect, and work with that.

You can’t fix something, if you don’t know it’s broken. And there are ways to fix — or at least address — some of the issues that come along with tbi.

As for interview stuff… Well, time generally tells if the interview didn’t go well.

Stay strong, everyone.

BB

The Computed World : The most massive exercise in inclusiveness in the history of the human race?

I’ve been thinking a lot, lately, about how much the web has changed my life. And the lives of others.

It’s integrated me — an esoteric iconoclast with a long history of injuries and interpersonal issues — into the mainstream in ways that I never before dreamed possible.

This is nothing short of a miracle. When I was growing up, I had such intense problems with other people and completing basic tasks, that I was often ejected from the midst of “regular people” (like after my head injury at age 8, when I was removed from my gifted students class because I was both unable to keep my attention on the subjects we were studying, and I was also becoming an increasingly disruptive influence on the class). The problems didn’t diminish as I grew older, either. If anything, they intensified, with considerable social consequence.

As I grew up (I won’t say “matured” 😉 I found myself so often at odds with everything around me, that I became increasingly marginalized, to the point where I could not hold a regular job and I could not perform the duties of the jobs I did have with any reliable regularity. But when I got into the world of computers, I found I was actually able to keep my attention on my work and perform valuable duties that earned me good money. The world wide web, in particular, made me more of a wage-earner than I ever thought I’d be. It’s made it possible for me to purchase a reliable car, to buy a house, to keep my pets healthy with proper veterinary care, to support valuable cultural initiatives that otherwise would not be able to exist, to have clothes that grant me entrance to the land of civilized people.

For someone who was for a long time socially marginal (as in, extremely and vehemently “alternative” to the point of being borderline feral), the influx of not only adequate money to pay grown-up bills, but also of work opportunities that not only challenged me but rewarded me with social acceptance and recognition, has had nothing short of a dramatic transformative effect. I would not be the person I am in the world, today, if it were not for the world wide web. You would not be reading this (obviously) if it weren’t for the web — and I would probably never have been able to write it.

On the personal side, the web made it possible for me to learn and study and research a wide variety of subjects, where before I was limited by the time I had to get to the library, not to mention which libraries I could get into. It’s also put me in touch with cutting-edge research that would normally only be available to professionals and people privy to the inner sanctum. Basically, it’s put me on somewhat similar footing (at least in terms of access) to information that used to only be far out of reach.

Email, too, has made it possible for me to communicate with other people in ways that eluded me for years. I remember the day it dawned on me that I could actually communicate with my parents now, because they had email (at last, after I’d been nagging them to get it for a few years). I not only had a window of time in which to pause and reflect on how to respond to them, but I also had their words in print, so when my mother came back and said “I never said that!” (as she is wont to do), I could counter with “Yes, you did!” and produce written proof. I avoided any contact with my parents for a number of years, because of communication problems. But having email solved some of the most significant issues that stood between me talking with them as regular human beings. This is also quite amazing, considering the level of estrangement between my folks and me, 20 years ago.

Forums and blogs have enabled me to have conversations with others that are paced as I like them — with plenty of time to step away and consider my response before I type and send it (which is important, because I’m known to unintentionally flame people, or just get all worked up over things and let fly at the drop of a hat). And while I did screw up a lot of my initial encounters, I could just drop out of the thread, beat a hasty retreat, and think about how I was going to re-enter the conversation — or if it was better that I just left well enough alone.

Going online lets me participate with other people without worrying about what I look like, what I sound like, if I speak too fast or too slow, if I fidget and twitch, if I forget what I was going to say, if I get confused by someone’s demeanor, if I get intimidated by my surroundings or crash and burn in sensory overload. It lets me speak my mind as a real person, not the person someone else imagines I am. It lets me measure my words and make sure I’m saying exactly what I meant to say, not get turned around on the spot and then either teased or mocked or dismissed as a result.

The online world lets me be fully human without the tbi-induced dangers of in-person interaction.

Yes, the web has changed my life. And for the better, in oh so many ways.

As they say over at A List Apart:

“Possibly the most important invention of the past century, the web is undeniably one of the most robust engines of knowledge transfer, political and social change, artistic endeavor, and economic growth the world has seen.

Remove the web, and billions in trade disappear. Websites enable people who can’t walk to run to the store. They bring knowledge and freedom of thought to places where such things are scarce; make every person with a connection a citizen of the world; and allow every citizen to be heard.”

Computers, in general, have made a huge difference in my life. I must admit that before I started working with computers, I was pretty limited. I was restricted to being a typist or secretary. I was limited to doing work that did not suit me, that was highly social in nature (because the non-social jobs went to people with college degrees, and I was unable — for a number of reasons — to ever complete my college degree). Computers made it possible for me to learn as I learned best — hands-on and at my own pace, which is different from others’ paces. I tend to go much faster or much slower than others. In many ways, I am unteachable in the traditional sense. A standard classroom environment just doesn’t work with me. My pacing is just not like other people’s, and I suffered for it for many years in the pre-computer job market.

But from the first time I sat down in front of a computer to learn something new — WordStar for DOS at my temp agency in 1987 — I’ve taken to it — that format, that forum — like a fish that’s been out of water for far too long. At last, I had a way to not only work, but also LEARN, and increase my skills — and employability and my earnability — far beyond anything that I had ever imagined.

After a lifetime of being told that there was something wrong with me because I wasn’t like other people, because I didn’t learn like other people, because I didn’t process information like other people… at last, here was a way for me to not only show that I wasn’t worse because of my differences, but I was actually a whole lot BETTER than anyone had ever dreamed I was. At last I wasn’t going to waste anymore.

At last, I had the right environment to work in. At last, I had the right kind of support in doing my work — a silent box humming away in front of me, not telling me I was an idiot, I was lazy, I was stupid, I was a loser. It just told me “Yes” or “No” or “Try again” — without making me feel stupid in the process. At last, I had  the right venues and avenues to use my skills and talents and inclinations.

With the massive assistive technology that the computed world is — with the desktops, laptops, email, world wide web, forums, websites, blogs, instant messaging, and more — it’s more than possible for me to excel at what I do best — logically process information and come up with solutions to tricky problems that stump other people. It’s more than possible. It’s now probable. And I can earn a living at it and build a life on that foundation.

And while part of me thinks I wouldn’t mind it at all, if I never put my hands on another keyboard, and part of me would like to find work that offers me more exercise and flexibility and less immobile staring at a screen all day, I know deep in my heart that my life — and the lives of all the people I interact with each day, the people I love, the people I support, the people I work with — just wouldn’t be the same without computers and the online world.

I need the assistance.

I need the connection.

I need to be as fully human as I can be, and use all my skills and talents to their fullest.

If that means I do it through keystrokes and wires, then so be it.

There is no shame in asking for help

I was watching an old episode of “Northern Exposure” last night — remember that? the show about the New York doctor who has to work off his tuition in the wilds of Alaska? I watched it religiously when it was on, in the early 1990s, and thankfully it’s now available on DVD through my local library. (Have I mentioned yet, today, how much I love my library — indeed, the whole system they belong to, which lets me request books from all over, even colleges that would normally be off-limits to me?)

Anyway, the show was about knowing how to ask for help. Swallowing your pride and accepting the help that others offer. It was a great episode, I believe from the fifth season. A bunch of people in town were in situations where they needed a little (or a lot) outside help, and they were eventually able to see past their own pride to either ask for or accept assistance from others.

Having a brain injury (even a “mild” one) that leaves traces of impairment can be devastating, in and of itself. All of a sudden, things don’t work the way they really should (I’m not going to pretend that I think my memory issues and emotional volatility and mood problems and cognitive issues are absolutely okay — they’re really problematic, at times, and a lot of the time, my life would very likely be a lot less complicated, if I had all the functionality available to me, had I not been hit on the head so many times). All of a sudden, the world gets turned upside-down, and very little seems to work like it once did. It can really lay a person low, losing faculties and abilities that you used to once take for granted. And it can really do a job on you, when your difficulties are not immediately apparent to others, but you’re dealing with them, all the same.

Things like slower cognitive processing — figuring out what someone just said to you and how you should respond… constant crazy-making ringing in your ears… wild mood swings and sudden temper outbursts… sleep disturbances… the whole raft of issues and challenges that can accompany mTBI, may be well-hidden from the outside world, but that doesn’t make them any less real or any less difficult to deal with.

Things get even more complicated by the fact that it’s your brain that’s been affected. It makes it harder to figure out just WHAT is going wrong, and how, and when, and what you’d like to do/see/feel/experience instead of what’s going on inside and around you. It can make it harder to even see that there IS something wrong, and you can spend a lot of time (like I did, for several years after my last fall) walking through the world in a kind of daze, wondering what they hell is wrong with you and why you’re having so many problems with such simple things.

That’s where help from other people comes in. That’s where assistance offered from others really comes in handy. I’ve had years and years of experience dealing with my head injuries, and much of that time has been spent trying to go it alone and do things myself. I’ll do it myself! was my battle cry for most of my life, especially during childhood. It was so hard for me to figure out what was going wrong, what the cause was, and what should be done about things, that conceptualizing it in a way I could explain to others — and then effectively communicating it to others — was an almost insurmountable task. So, I ended up taking on a lot by myself, and I really muddled through my life, one day after another… for decades.

But when I finally started to put two and two together, and I realized that many, many of my difficulties could be traced back to my head injuries — my behavior and my life experience changed dramatically either immediately after the injuries, or they went downhill very precipitously within months — it became all the more clear to me that I did need help. That I had limitations. That there are parts of me that don’t function the way I want/need them to. And that I couldn’t go it alone anymore.

So, I started asking for help. In small ways, then building up to larger and larger ones. I have to admit, I still have a lot of trouble at times asking for help, in part because of my pride, in part because I sometimes have a really difficult time knowing whom to ask and what to ask for. But I am learning that if someone offers me help, it’s often best to accept. And not only for my sake — for the sake of others, as well.

Asking for and accepting help isn’t just for you. It’s not just for me. It’s not just for the benefit of the person who needs assistance. It’s for the person who wants to help, too. It’s for the person who sees another human being in need, and wants to reach out and lighten their burden. It’s for the person who longs to make a valuable contribution to life, who longs to pitch in, who longs to be of use. I’m one such person — I love to help other people, and I love to contribute to their well-being. It’s been that way all my life, and I’ve actually gotten in trouble for being “too helpful”.

Helping others is a need I have. It’s a need I feel compelled to fill. And I know for a fact that others share that same need. We want to be valued. We want to be included. We want to be part of the solution and help overcome others’ problems. We want to pitch in. We want to be part of something bigger than ourselves. We want to be the best people we can be, by helping others to do the same.

So, accepting help from others doesn’t just help me — it helps them, too. It includes them in my life. It makes them part of something good. We all need that.

So, the next time someone offers you help, whether you’ve had a TBI or not, please accept their offer (within reason of course). The next time you’re struggling, and someone offers to help you out, let them. Let them carry something for you. Let them help you complete something you started. Let them come to your assistance. Let them hold the door open for you. Let them be of use to another human being. When you accept help from another person, you don’t make yourself weaker. You make yourself stronger.

And that’s how it should be.

A brilliant opportunity

I woke up today thinking that the TBI survivor community has a great opportunity before it — with the power of the internet and new electronic publishing technologies like blogs and forums and emerging print-on-demand technologies, we really do have the ability to offer each other the support that we cannot (and probably will not) find from the “system” that’s supposed to help us.

The medical industry doesn’t seem to have much interest in helping us address our issues in a consistent and substantive way.

All that some can manage to tell us is, “Every TBI is different,” without mentioning the myriad similarities so many of us have — and can benefit from hearing/learning about.

And frankly, there’s not a lot of money in rehabilitating someone who is no longer “able” to function at the same level they were before…

So many of us just get sent out to pasture. We fall between the cracks. And people who are in public positions to change that, don’t seem to care. I’m sure, on some level, they do, but so much is not known about this condition, and so many other conditions are more obvious and more easily tracked and more easily conceptualized… and are less frightening to the average person, that TBI just isn’t on the radar the way, say, cancer and heart disease are.

Now, I lost one of my little sisters to breast cancer, 2-1/2 years ago. I sat at her side and held her hand during her last hours of dying, so I’m certainly not opposed to cancer getting as much attention and funding as possible. And people close to me have had heart issues, so I’m all for addressing that, as well.

But doesn’t anyone have any attention to spare for TBI folks?

Perhaps not — but we do. We, the survivors. We, the family and friends. We, the ones with the most to lose and the most to gain. We can — and should — be there for each other and pool our resources and experience and strength and hope, for the benefit of everyone concerned.

Ultimately, the very society which doesn’t have much time for us, will ultimately benefit. But that’s not something I can prove right now, and it’s not something I can substantiate with numbers and metrics, so society at large will just have to wait and see how well we can rebound… and how well we can serve one another in the best way humanly possible.

An opportunity lies before us, to come together and pool our resources and offer one another help and support — largely in the form of information that’s distributed across the world wide web. Our info can go a long way. We can do for ourselves, what others cannot do for us. So, let’s do it!

My second neuro visit OR If only they could walk in my shoes…

Here are details from my most recent neuro visit, I believe back in August. As you can see, it was a less than stellar experience, and I’m still recovering a bit from it. It’s hard to believe that someone who specializes in neurological disorders can be so callous, but here we have it…

I had a 9:30 appointment scheduled with Dr. X to discuss headaches I’ve been having. I had been to see another neurologist about my series of mTBI’s some time back, but the results had not been conclusive, and I felt I’d just been shoved off. I didn’t mention this past visit to this new neuro — In retrospect, that was probably a tactical error, but I wasn’t sure how to explain what had happened, so I decided it was better to say nothing. When in doubt, I tend to do/say nothing, rather than initiating and seeing things blow up in my face. Plus, I wanted to start with a clean slate and get this doctor’s opinion without input from anyone else.

I had been to see this neuro on other occasions with a friend of mine who has some issues of their own. I thought it would be a good idea to work with someone who already knew me in a different capacity. I thought it would be easier for me to work with someone with whom I was already familiar. So, I had high hopes for this meeting. Hopes that didn’t pan out.

Here’s what I recall happening:

I arrived early at 9:20 and finished filling out my paperwork.

The receptionist was unpacking boxes at the time. I settled up with her for the co-pay and gave her my license and insurance card. I thought that the co-pay was $15, and when she corrected me that it was $25, I felt as though she thought I was trying to “get one over on them” and get out of paying the $10. I felt as though she was treating me like I was hostile. It was an innocent mistake on my part, and not intentional.

Around 9:30, the receptionist  had me go in to Dr. X’s office. I wasn’t sure about which door to go in, and she said “You know which one it is.” I honestly didn’t. I couldn’t remember which one was his, but when she pointed me to the door, I walked in and took a seat.

Dr. X greeted me cordially, shook my hand, and we chatted a little while.

He asked me why I was there, and I said I’d been having constant headaches.

He looked over my papers and told me that I had forgotten to fill in my employer and my occupation. He seemed miffed that I’d forgotten. It wasn’t intentional on my part. I gave him the information then, and he filled it in. We chatted a little about my work.

He asked me how old I was, and I hesitated when I answered. I don’t tend to think of myself as any certain age, and I will usually have to calculate how old I am, based in the year it is, less 1965, and then figuring out where in the calendar year I am. Dr. X commented that it took me a while to answer, as though there were something wrong with that, and I told him I usually have to do math to figure that out.

He then started to look over my information sheet, which I’d taken great pains to complete as thoroughly as possible. He flipped through the pages, and then started to work his way down through.

I pulled out my notebook with my family medical history, my history of injuries, my symptoms, and other information I’d collected which I thought might be important to know. I also had many pages of a headache journal I’d been keeping for a number of months, which showed exactly where and with what intensity I’d been having headaches. I had compiled this information over a period of more than 6 months, and it contained my most complete understanding of my cognitive situation. I also brought the notes with me to consult, so I could be accurate in my accounts. I tend to get turned around and unintentionally confabulate when I try to recount things (more when I’m under stress, but even under regular conditions, I have had a lifelong issue with unintentional confabulation), and I had hoped that I could rely on my notes to help me be as accurate as possible.

Dr. X told me to put away the notes. He didn’t want to see them. He also didn’t allow me to refer to them.

He proceeded to ask me questions about my headaches, the intensity, the frequency, the nature, the duration, and when I took a while to answer him, he became very impatient and told me I was over-thinking things.

He told me not to over-think my answers, but just to answer off the top of my head, which is very difficult for me to do.

I had to pause a lot to think, and my answers were not instantaneous. I could not verbalize my answers as quickly as he wanted me to, apparently, because he kept telling me to just answer with averages.

It’s very difficult for me to answer that simply, because nothing is that simple to me. I do not think in terms of a “bottom line” and I have a very precise and logical thinking process that sometimes takes longer than “normal” to complete. Being accurate and truthful is very important to me, and when I cannot be accurate, I become anxious. He really pressed me for quicker answers. “Just off the top of your head,” he said. “Just on average.”

It felt as though he were intentionally trying to trip me up and make me contradict myself, or find some “hole” in my “alibi”. I felt like I was being grilled, and I had done something wrong.

I had to stop and think a lot — I could see the answers to his questoins right in front of me — when he asked me about timeframes and durations of my headaches, I saaw images of calendars with days marked, and the severity of my headaches marked on the calendar (some were in colors). I could also see the pages of the calendars flipping by, and I tried to see what information was where. It was very hard for me, though, because he was moving faster than I could go, and I kept losing my place with the images. I had to close my eyes a lot to think, and I had to look down at the ground. I couldn’t look him in the eye AND figure things out, because looking at him distracted me from my thinking — and I started trying to “clue in” to him, instead of the answers to my questions.

At one point, he appeared to be very frustrated and said I needed to speed things up, or “We would be here till next Tuesday” before we got all the answers to the questions. I agreed with him, but I told him that I had to translate my visuals into words, and I am not a primarily verbal person. I tried to explain that I see the answers as images, and then I need to translate them into words, but I’m not sure it sank in with him. I was getting very frustrated, and I was tearing up, which seemed to annoy him.

He also asked me about any addiction background, and I told him I had quit drinking in 1989. It had been 19 years since my last drink, and I had not touched a single drop since. He asked if I’d taken drugs, and I told him a little bit — speed in high school, but only a few times a week, as it made me too speedy and upset my stomach. I told him had smoked marijuana while I was drinking during high school and college.

I may have left the addiction piece of information off my form, but it was not intentional. It was an oversight. He didn’t seem to see it that way.

He asked about any medication I was on, and I told him that I didn’t take any, and I was not a big medication person. I told him that I took Advil, now and then, and I had once taken it for headaches, but it had since stopped working at all.

We talked about my head injury experiences, and I gave him details from what I knew and could remember. It was very difficult for me to think on my feet, and I was becoming increasingly anxious. He was moving very fast, so I’m not sure I answered everything completely. I had my notes, but he would not allow me to consult them. When I tried to pull them out, he told me to put them away.

Dr. X seemed to become increasingly impatient with me, and he said we were just going to focus on my headaches.

He asked about the nature of them, if anything helped, if I exercised regularly, if I was under stress.

I told him that I’ve had a lot of stress, and that my headaches have gotten worse over the past 6 months. He asked if I’d been under more stress, and I told him I’d been in a very stressful job for 3 months.

He said he’s not a big “pill person”, and I said I was not, either. I prefer to deal with my aches and pains in other ways, and sometimes I’d rather just live with pain, instead of taking medications that gave me side effects.

He asked about the vertigo, and I told him it was worse when I had allergies. I told him that it was very intense and I had to hold onto things to keep from falling over at times.

He asked about my history with other injuries or conditions, and I told him about a diagnosis of lupus diagnosis in the late 1980’s, early 1990’s. He asked if it was discoid or systemic, and I believed it was systemic, but when I told him about the skin rash, he said that sounded like discoid, not systemic, and I became confused and said it may have been discoid, but not tests were ever conclusive. Also, the medications I’d been on had not helped.

After a while, we went into the examination room, and he conducted a physical neurological exam. It was standard, and he seemed to go very quickly — more quickly than I’d seen him go with a friend of mine. He seemed to be in a rush, and it was painful when he checked the reflexes on the bottoms of my feet. It was hard for me to answer quickly, when he pricked me with the pin, and sometimes it took a little while for me to verbalize I’d had the sensation. He seemed to think that I was “fixing” my answer to fit what he wanted to hear. I was getting confused and felt like the room was pulling away from me, and my reaction time was slowing.

During the exam, he asked me again if I had taken drugs recently. I told him no, I had not taken any drugs since stopping drinking in 1989. I believe he repeated the question, and I answered him again in the negative. I couldn’t figure out why he was asking me if I’d taken any drugs. It didn’t seem like the kind of thing he’d be asking me while he was checking my reflexes.

He told me that my exam was normal, and everything looked good.

We went back into his office, and he said that my exam looks clear – no indication of a tumor or vascular issues. He said he believed my headaches are tension headaches and he wrote some notes on a piece of paper. He gave it to me, and he said that my headaches are probably muscular in nature, related to stress. He also said that he thinks the vertigo is probably BPPV (Benign Paroxysmal Positional Vertigo) or Meniere’s Syndrome, and I could check with an Ear-Nose-Throat (ENT) specialist if I chose to. He didn’t seem to think I needed to see someone, but my ears have been hurting me a lot, and I said I would like to talk to an ENT specialist. He referred me to a doctor he knew and believed was good. He wrote that down on a piece of paper (his prescription pad?), as well, and gave me that.

He said that he didn’t think that medication would necessarily help, as it may cause side effects, and I agreed with him. He also said he didn’t think an MRI or EEG would show anything, which was really disappointing. I mean, I have a whole lot of issues, and I have trouble sorting them out, and the one way I can think of reducing some of the mystery, is to have an MRI or an EEG or something like that. I really didn’t know what to say at that point. All I could manage, was to agree with him, which irritated me when I did it, but I was helpless to do anything else. My thinking process had slowed considerably by that time, and I was feeling very overwhelmed and confused by everything. I wasn’t sure if he was being congenial or if he was upset with me. He seemed distant. But I couldn’t really tell for sure how he was being with me.

He asked if I exercise, and I didn’t know what to say. I lead a pretty active life, and I move a lot through the course of each day. I could see myself walking and moving a lot at work, walking across parking lots, and making extra effort to incorporate exercise into my daily life, but I couldn’t just come up with a simple “yes” or “no”. I had to think about whether or not I was going for walks. I eventually answered “Not regularly,” and he said, “No” and wrote that down. He said he wanted to see me exercising on a regular basis, nothing really heavy, just maybe going for a brisk walk with a friend several times a week. I saw a friend of mine and me walking along a road near my home, but I didn’t know when that would or could happen, as I work such long hours during the week. Dr. X appeared a little exasperated with me, as though he thought I wasn’t being fully cooperative.

He asked me if there was anything I do that relaxes me, but I was having a hard time processing at that point. I couldn’t think of anything — I was drawing a blank. I told him I draw and I write, and he recommended I draw 15 minutes a day. I couldn’t figure out how to explain that when I draw, I get very absorbed in my work, and I lose track of time, but there was no time for me to figure out how to say that. He also recommended that I exercise regularly, go for a brisk walk with a friend on a regular basis. Again, there was no time for me to respond in a way I felt was adequate.

I told him I was going to see another doctor for a neuropsychological exam, and he said he would like to know the results of that. I told him I would keep him apprised.

He said he wanted to see me again in 7 weeks, to see how I was doing.

I made an appointment with his receptionist. I had a hard time thinking through my schedule at the end of August, beginning of September, and she was not very patient with me. She acted like I was pretending to be “slow”.

Basically, I felt completely humiliated and treated like I was a liar who was seeing him under false pretenses — as though I had been an addict showing drug-seeking behavior. I left in a daze, and I went to the nearest bathroom, locked the door tightly, crouched down in a fetal position, and cried… and cried again in the car before I drove to run an errand. And felt like crap for the rest of the day. I did collect myself and manage to get on with my day, but the flow of my day was completely disrupted, as was my weekend. It was too disruptive for words, and I in retrospect, I really resent the implications that I think were in play.

Sometimes, it just sucks when nobody can tell you’ve got issues… and they treat you like a criminal, just because you’re trying to get some answers (and they apparently can’t help you, but don’t want to say so).

It also sucks to have processing difficulties that might be making things look worse — or better — than they are, and that keep you from being able to ask for help.

A few thoughts on light and enlightenment

Over at my Tough Boy Initiative I read the following about research on sensitivities after TBI

This article presents research specifically seen with TBI. I wish they posted a date it was conducted, or a link to a legit article! Legit research or not, the following statement I very much believe – just from talking to people, who know people who have struggled in similar situations. I also believe it from my own experience regulating the amount of sun/light I see each week, exposure to retail stores with fluorescent lights, and from what websites I visit most when I’m out of it. All these, and more, contribute to how comfortable I am in the moment, day and throughout the week.

Dr. Tosta stated in her research:
————
Dr. Tosta stated in her research:
It appeared that these individuals were so overwhelmed by the changes to their life that they had little awareness of the severity of the symptoms contributing to their inability to function.
————

I’ve been thinking a lot about anosognosia, lately, and this is in keeping with my current theme.

While it may be true that the overwhelm of dealing with TBI prevents us from identifying the challenges, there’s another aspect that lots of people don’t mention: a condition called “anosognosia” — basically, Latin for “not knowing there’s a problem”.

It’s a very interesting phenomenon that’s common in stroke survivors and severe TBI survivors, but in my case — a series of mild TBI’s — I can definitely tell it’s caused problems. You literally do not know there’s a problem with your processing. Other people can tell, but you can’t. Some people don’t even realize their one side is paralyzed. You can read more about it at http://discovermagazine.com/1995/may/thebrainthatmisp502 which is an article I really enjoyed.

So, while overwhelm may be part of it, there’s a cognitive aspect, as well. Dr. George Prigatano has written a great deal about this phenomenon, and Google Books has a pretty complete version of a book he contributed to: “Awareness of Deficit After Brain Injury” By George P. Prigatano, Daniel L. Schacter — you can read most of it at http://books.google.com/books?id=xze89PCLaWMC&printsec=frontcover&dq=Awareness+of+Deficit+After+Brain+Injury&client=firefox-a&sig=ACfU3U0fGDNZyDxdkuBwr4jzLwJ8_MoyGQ

It’s some of my favorite reading, these days. I feel a lot less insane/deficient/incapable, when I realize that the problem is not with ME — it’s with my brain 😉

My catalog of injuries (that I remember)

Below are the head injuries I’ve realized I’ve had over the years — I’ve “narrowed” the list to ones that I recall affecting me – i.e., after the event, I was immediately dazed and confused and/or I noticed significant changes in my processing, moods, behavior.

Childhood Injuries

Fell down the stairs @ age 7

  • I fell down the stairs of our house — about 10 stairs, not very steep
  • I remember standing at the top of the stairs, then I was at the bottom of the stairs, and I couldn’t figure out how I’d gotten there
  • I got up and went to stand in the middle of the dining room near the bottom of the stairs
  • My mother heard the racket and came in to see how I was, but I wouldn’t let her near me.
  • All I could say was, “It was me.”
  • I remember being very dazed and “out of it” for a while, then I collected myself

Hit on the Head with Rock @ age 7 or 8 (1972/73)

  • I was struck on the head with a rock thrown by some kids from a nearby neighborhood
  • struck on the right side, near the top, behind the hairline
  • I remember being knocked out/coming to with my sister hovering over me crying
  • We went home, and Mom and Dad saw to me
  • they checked to see if I had a concussion – they got help from a friend who was a nurse who told them what to do — get a flashlight and check my pupils
  • they had me lie down and made sure I did not fall asleep
  • I laid on my left side, so I believe the bump was on my right
  • I think I was restless and didn’t want to lie down… but I also wanted to sleep
  • I remember them looking me over to find the bump
  • I tried to hide my injury from them
  • I was very confused and upset with myself for causing them concern
  • I didn’t get any medical attention
  • My memory immediately after that is sketchy — very “Swiss cheese-y”
  • I think that I may have gotten glasses after that
  • I was looking up at the moon and it looked like it was double
  • I told Mom and Dad and they got very nervous and agitated

After that, I became increasingly aggressive towards the kids I walked to school with, teasing and taunting them. I remember wondering why I was suddenly being so mean to them, and wanting to stop myself, but I couldn’t. I became increasingly withdrawn, I had increasing trouble in school (thinking and interacting with other kids), I got kicked out of my gifted students class for being disruptive, and my 4th grade teacher called me “Crazy ____-zee”.

I was always very physically active, when I was a kid, and I had a lot of falls and bumps while playing

  • It was not an uncommon thing for me to bump my head while we were out and about
  • in the woods playing, hiking, climbing
  • skating, falling on the ice
  • playing ball and getting hit or knocked down
  • I never thought anything of it — I just got back up and kept playing

Other childhood falls/injuries that I can remember:

Age 8 -11? Not exactly sure when this was. Fell off a running horse at camp, not sure if I hit my head.

  • I was riding a horse and it broke into a gallop and tried to throw me off
  • I hung onto it, but eventually slipped off
  • When the counselors asked me what happened, I had trouble remembering what had occurred and I got confused and disoriented when I tried to tell them what had happened. I couldn’t remember exactly.

High School
Freshman/Sophomore (?) Year (1979-80?)

  • Fell from a tree I was climbing
  • I “blanked out” and “forgot to hang on”
  • I fell about 10-15 feet, landed on my back across a log
  • The fall dazed me and knocked the breath out of me – I was dazed for several minutes after the fall
  • I stumbled home and laid down
  • I was very addled and turned around

Senior Year (1982-83)
Football — got tackled and was a little slow getting up

  • was dazed and confused and out of it for a while, but got up and kept playing
  • the guy who tackled me saw that I was out of it, and he cut the game short after a little while and he saw I was definitely impaired (moving more slowly and out of it)

Soccer — fell down and took a little while getting up

  • was dazed at first, but made light of it

Lacrosse — very physical games

  • lots of contact, bumping, falling, rough-and-tumble

Adulthood

Car Accidents

I was in several car accidents (1988-89)

1.Hit from the (driver’s) side by a speeding sedan, 1988

  • Police came, I think no tow was necessary (? can’t remember exactly)
  • I was disoriented and “off balance” for days after that
  • Police report faulted me, but it was not my fault, and I couldn’t collect my thoughts to file a complaint or amend the report
  • disoriented and intimidated
  • One of my bosses offered to go with me to the police, but I couldn’t collect myself enough to do it
  • I was unable to follow instructions and couldn’t understand what my bosses were saying to me
  • it just sounded like gobbldy-gook – I couldn’t make out the words, and I thought it was something wrong with me, or their accent
  • I had been able to understand them before — I recall standing in the office, just looking at my boss, trying to figure out what he was saying to me, wondering why it didn’t make any sense to me
  • I just told myself it was his accent, but I knew something else was going on, I just didn’t understand what

After that I left that job a day or two later

  • I just didn’t show up one day
  • didn’t bother calling the agency
  • I quit working completely and started drinking (a lot) during the day

2. Rear-ended in slow traffic, 1989(?)

  • On the way to the train station, got rear-ended in suburban traffic
  • No damage to the car, didn’t file a report or call the police
  • Just took off — in a hurry to get to the train station
  • Had difficulty getting there, got confused and turned around and had to keep looking for the train station, but I pushed through and got there
  • Neck was sore for days after that — very strong feeling of whiplash
  • Never saw a doctor about it… everything was a whirlwind around me

After that I cannot remember any immediate, obvious changes, but work was a challenge for me, and I wasn’t dealing well with it.

3. Rear-ended in heavy holiday traffic at Thanksgiving time (1995)

  • Hit from behind
  • No police called, traded info with other driver
  • Understanding and filling out the rental agency report form was very difficult for me, and it took me a while, but I got it done
  • I missed some of the “dings” on the car – completely missed it, even after looking the car over with a fine-tooth comb

After that I cannot remember any immediate, obvious changes after that, but it became increasingly difficult for me to deal with my stressful job, to draw boundaries, to keep on top of my duties. I dropped a lot of the projects I’d started, had issues with communicating with attorneys, and could no longer advocate for myself with my boss(es). My main boss reprimanded me for not being as articulate as usual. He clearly noticed a difference, but nobody connected it with the accident.

Various Falls
Fell off horse – early/mid 1980’s?

  • We were camping and went horseback riding
  • I was on an unruly horse that I couldn’t control. I had trouble keeping my balance.
  • The horse threw me off – and went back to the camp without me
  • I’m not sure if I hit my head

Fall Down Stairs @ age 39 – Day (or 2) after Thanksgiving, 2004

  • I fell down the stairs at my parents’ house and smashed the back of my head on 3-4 of the top stairs. No open wound.
  • I was standing at the top of the stairs at my parents’ house (very steep staircase, about 20 stairs or so), packing bags and carrying them to the car to head home
  • I was going to walk down the stairs, and someone called to me from the bedroom
  • I stopped to listen to what they were saying, and I lost my balance at the top of the stairs – I was in stocking feet, and my feet just went out from under me.
  • I landed on my back and hit the back of my head
  • I hit my head hard on the top 3-4 stairs, as I went down
  • My head just bounced off the top stairs
  • I lifted my head up and tried to stop myself by putting my hands and feet along the walls — couldn’t stop my slide
  • I ended up sliding down the whole flight and stopped at the bottom
  • When I got to the bottom, I was dazed and drew a blank
  • I was “out” briefly — maybe a few seconds
  • I didn’t immediately know where I was or what had happened to me
  • Didn’t know why I was at the bottom of the stairs
  • I wasn’t sure if I could move
  • Someone called to me, and I heard them from a distance
  • I answered, and I got up and went into the dining room before anyone could come to check on me — I just didn’t want to worry them
  • I got up and went into the dining room to check myself out
  • My back was hurt, and I was dazed
  • I didn’t really think anything of hitting my head
  • I was more worried about my back being torn up – it really hurt
  • Someone came downstairs to check me out, and asked if I’d hit my head
  • I said “No” – I’m not sure if I even realized it at that time, I was really dazed — but I do remember that I didn’t want to worry them, and I didn’t want to have to concern myself with that, because I didn’t trust the nearby hospitals. I was also concerned that the hospital would take actions that I couldn’t defend myself against, because I couldn’t communicate effectively.
  • My back had a big brush burn on it, and we focused on getting that taken care of

After that I started having more trouble at work, relationships fraying and straining, not being able to keep up with my work, constantly feeling like I was falling behind, saying inappropriate things (insubordinate statements) in meetings, and becoming openly hostile and verbally aggressive towards others I worked with. I went from being one of the top go-to people in my line of work, to persona non grata and being told I had to leave the group by July of 2005 (8 months after the fall). I converted from a full-time employee to a contract technical writer at about 60% of my former pay.

Putting the logic in “neurological”

Okay, here’s my next question:

If neurologists are trained in a “scientific” sort of method and they specialize in studying the brain, why is it that there seem to be so few neurologists out there who truly “get” TBI?

This is quite distressing… and by “this”, I mean all the stories I’ve heard and read about how people who have sustained TBI’s are either dismissed or misdiagnosed or just plain mistreated. My own story is among them.

Before I start, I just want to say, this is not intended to be a rant about the terrible experiences I’ve had with neurologists. I have had some pretty distressing ones, but I really think it’s more productive to seek solutions and embrace the lessons, rather than gunning for revenge. We’ve all been hurt by someone or something, along the way, and if we’ve got TBI-related issues, the situation tends to be muddied — both by the ignorance of the general populace (and a lot of “experts”) and by our own altered cognitive processes. I realize, as a result of my TBI’s, that my mind can play tricks on me. So sometimes things aren’t as bad — or as good — as I think they are, so please take what I’m about to say with a grain of salt.

My own neurological saga began nearly a year ago, when I started to put two and two together and realized that there was something fundamentally wrong with my cognitive process. Something that had gone unrecognized and undetected for almost my entire life, but had been a persistent problem and issue for many, many years.

In the process of talking with my therapist, I took a very close look at the events of my childhood and how they had affected me. I’ve had a lot of behavioral and cognitive and emotional problems over the course of my life — I’ve been able to mask the cognitive and emotional ones really well, mostly by just keeping quiet and being very vigilant about people’s reactions to me, but the behavioral ones were a real problem when I was a kid — it’s what people could see: the temper tantrums, the meltdowns, the bad moods, the lashing out, the yelling, the acting out… Yikes.

Anyway, I was trying to figure out why my siblings had similar experiences to mine — some of them had worse ones, in fact — but I had the most trouble with things. One day, I just mentioned to my therapist, off-hand and very matter-of-factly, that I’d been hit in the head with a rock when I was 7 or 8 years old. She didn’t follow up with that, but that started me thinking. And it occurred to me that that injury, which I recall knocked me out briefly, might have affected me more than I realized.

I went about collecting and recording as much information as I could about my observations of my life — using valuable guidelines over at www.headinjury.com as a starting point. (Thanks! to them for their great info! What a great resource they are!) I wrote down as much information as I could about my childhood experiences that seemed to be directly related to my injury at age 8… and then I collected as much info as I could about how it appeared my adult life had been impacted by that injury. I started to see a lot of patterns that bore a really close resemblance to things I read about other people experiencing. (I’ll post some of what I collected, so you can see what I came across.)

Then I systematically kept track of my daily experiences, and I recorded what went on with me on a regular basis, tracking it to the symptoms of TBI. And I read a lot online about how people can be affected by brain injuries.

Now, all this was happening behind the scenes of my regular life — sort of on the QT. I did reach out to local brain injury associations, as well as some support groups. I was still really searching for some understanding of what had happened to me, and how it affected me. All of a sudden, I had a plausible explanation for all the difficulties I’d had as a kid, why I was so erratic, why things that were easy for other kids were hard for me… and why I’d made the kinds of decisions and taken the sorts of actions I had as a teenager and an adult. So many things could be explained by this! It was both euphoric and disconcerting. A lot of information came into my life in a relatively short period of time. And I was pretty much doing it on my own.

Knowing that I have a long history of being mistaken or downright wrong about things that seemed pretty “obvious” to me, and knowing that going it alone was perhaps not the best way to do things, I decided to seek out help. I was given some great information from other TBI survivors about finding a neuropsychologist to do an assessment of my situation and help me formulate a plan to rehabilitate myself. The only problem was, someone warned me, my insurance company was notoriously difficult about covering neuropsych exams (NPE), unless they were medically warranted.

I knew I needed an NPE — really for the sake of getting some professional corroboration about my situation, so I wasn’t just running around saying “This is what happened to me!” and making a total fool of myself in the process (It’s happened too often before, sadly). But how to qualify to get one?

I asked around, and people said that a neurologist would be the one person to determine if you needed one — anything less might not be honored by the insurance company. The problem was, not all neurologists have a clue about TBI, and some of them are downright hostile, when it comes to brain injury. I’m not sure why this is, if they’re neurologists and it’s their job to know about the brain, but there we have it.

So, off I went in search of a neurologist who specialized in TBI. I searched high and low, pulled data from listings from support groups and organizations, then cross-referenced that list with the neuros my insurance company listed on their website. It was a painstaking process, but eventually I found a neuro who specialized in TBI who seemed like a decent sort of fellow.

I compiled all my notes and edited them down and collected them in a three-ring binder. I listed my symptoms, my history of head injuries (which had actually lengthened — the more I thought about things, the more injuries I realized I’d had), my issues, and information I thought would be helpful for him to make some sort of diagnosis. I genuinely thought he would be open to it, and that he would appreciate the information, without having to sit and ask me all the questions. Plus, I was afraid I’d get turned around and not be able to answer accurately, so I wanted to make sure I had the right information recorded. I take my health very seriously, and I take my integrity seriously, too. I didn’t want to be misstating or confabulating or confusing the issue.

Well, I don’t have the time here to describe exactly what happened, but the end result was me feeling incredibly dismissed and my difficulties downplayed. (I’ve got to write more on this — it’s a great story and an educational tale — but not for this post.) Bottom line was, the neuro wouldn’t pay any attention to the information I’d collected, he ruled out the benefits of an MRI, he tossed my book aside, and he reached the eventual conclusion that I had “emotional problems” and I needed to see a cognitive-behavioral therapist and possibly go on Ritalin or some other stimulant.

He basically told me that my situation was “more complex” than he liked to deal with, and there wasn’t much he could tell me, so I should go see a neuropsychologist.

Well, yuh, I already knew that. I had been hoping he could at least confirm or deny the extent and possible impact of my injuries. But apparently, it’s kind of hard to tell what’s up with someone when they’re talking about multiple injuries sustained over the course of more than 30 years.

In retrospect, I think that my emotional state at that time didn’t help. I was very stressed when I went in to see the doctor, and I wasn’t really clear about the answers I was giving. I also didn’t feel as though he was in the least bit sympathetic to me, and I had a lot of trouble verbalizing the answers to his questions — either I gave him too much information, or too little. It just wasn’t good. Plus, he only had 50 minutes to spend with me, so there wasn’t much either of us could accomplish in the meantime. He did give me a neurological exam, and I came out looking pretty normal, from what I can tell.

I left that visit feeling genuinely unnerved. At the very least, I had expected at least a little indication of interest in my situation, but the doctor seemed more interested in seeing people with “real” problems — as though a lifetime of catastrophic relationship failures, a patchwork job history, constant headaches and ringing in my ears, mood and behavioral issues, and a complete and utter failure to fully realize my potential is not much of a problem at all.

Maybe he was looking for something more dramatic. Like a tumor. Or cancer. Or a Phineas Gage-like iron spike through my skull. Or some sort of medical data, which I did not have, since I’ve never gone to the hospital or sought medical treatment for any of my injuries.

Anyway, I was pretty torn up about the experience, and I continue to be bothered by it. It doesn’t help that this TBI business is wreaking havoc with my perceptions, but there seemed to be an alarming lack of intellectual curiosity, or even logic, to the doctor’s demeanor.

So, I buckled down and went ahead with finding a neuropsychologist who could perform an NPE on me, per the doctor’s directive. Again, like Diogenes with proverbial lantern in hand, I searched high and low, seeking a qualified individual who had a clue about my type of situation. Again, I had to cull out the ones who were flagged as “trouble” by a brain injury support group info packet (like the ones who testified for insurance companies to discredit TBI survivors in court). And then I had to cross-reference them against the insurance company’s website. And then I had to research their background and their professional reputation, if I could find it.

I found someone, at last, but he couldn’t fit me in until September. This was back in April, or so.

So, I sat and waited. And lined up another job. And totally screwed up that job and had to go find another one, so I wouldn’t lose my house.

All the while, it was getting harder and harder for me to deal with being so brushed off by that first neuro. So, I thought I’d see another one — someone a friend of mine had been seeing, whom she liked pretty well. I made an appointment with him and went to see him, thinking that I might get farther with him, if I just focused on one issue, rather than the whole kit-n-kaboodle.

I made up another version of my notes for this doctor and took it with me to reference. I wasn’t going to make the same mistake I’d made with the last doctor and just run my mouth without anything positive coming out of it.

But this guy was even worse than the last one. I think he may have either talked to the other doctor or he saw some of my notes from my PCP, who got a letter from the first doctor, and he treated me like a “hostile witness”. He wouldn’t let me use any of my notes, and he just grilled me over and over about details I wasn’t clear about, or I had to take time to think about. He announced that an MRI would be pointless to do, and he said my headaches were just stress. I had no time to gather my thoughts or describe the full spectrum of my issues, and I left feeling totally bulldozed and dismissed… and a little mistreated. (Again, I’m sure my TBIs didn’t help my processing at all — I’ll post more details on my experiences later — it’s really a very informative story.)

In the end, I didn’t get anywhere with these doctors. Maybe I was looking for the wrong thing from them. Maybe I was expecting too much, hoping for sympathy or at least a little curiosity about me and my situation. But still, it seems to me that a neurologist (for heavens sake!) would exhibit at least a little interest in someone like me — someone who has sustained multiple mild traumatic brain injuries over the course of my life, and has still managed to put together a life that a lot of people would be happy to have — with a loving spouse, a great house in a great town in a great state, pretty decent facility at getting along in the world, a career that looks great from the outside, the ability to be employed, and to be fully engaged in my life (my limitations notwithstanding).

But in the end, I got nothing. Worse than nothing. I got dismissed. Shunted off. Sent away to someone else.

I’m a TBI survivor who needs help understanding exactly what is up with me, and why my brain doesn’t work the way it should. I sought the help of neurologists… who just couldn’t be bothered with me. They dismissed me without so much as a second thought, from what I could tell. It’s their job to help people with neurological issues… I’ve been under the impression that it’s their job to identify the issues and be of assistance. And yet, both of these guys exhibit precious little interest in my situation.

Where’s the logic in that?