How I figured out something was REALLY wrong

Yes, I picture’s worth a thousand words… Here’s a graph of what happened to my financial situation, after my fall down the stairs (I hit the back of my head on the top 3-4 stairs) in 2004:

The interesting thing about this is that I never fully realized that there was something really really wrong with me, till I looked at my finances in 2007. Prior to that, I had thought that the problems I was having with my moods, my temper, my attention, my sleeping patterns, my pain… welll, everything… were due to things outside myself.

I literally thought that it was other people who had the problem. Or, it was just job stress. Or it was an unhappy childhood. Or I didn’t realize there was something wrong at all.

But then, in 2007, I looked at my finances and I realized that something was very, very wrong. I, who had been in the financial services industry for a decade or so, who was studying to become a financial advisor, who had been all about money for years and years and years… who knew about all sorts of common sense investment and savings vehicles… I had literally forgotten to keep track of my finances. And I had forgotten to stash a large lump sum I’d received in a secure interest-bearing savings account.

People, that’s just common sense. It’s the bare minimum you do with a lump sum of money, let alone all the other things you can do with it.

But I hadn’t. Even knowing what I knew, even having the positive orientation that I had to money, even having all this domain experience in savings and investments… something had broken down. And it forced me to take a long, hard look at all the other factors that had been plaguing me in my life.

Suddenly, a pattern emerged. And I started to remember things i hadn’t thought about in years…

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.