One concussion, two concussions, three concussions, four…

I had a meeting with my neuropsych last week, when we talked about my concussive history. I had read the article by Malcom Gladwell in the New Yorker called Offensive Play, and I had some questions about how my past might have made me more susceptible to tbi, later in life.

I was wondering aloud if my rough-and-tumble childhood (when falling and hitting my head and getting up and getting back in the game ASAP were regular parts of play), might have brought me lots of subconcussive events, like so many impacts on the football field. I checked in with my neuropsych, and they had me recap from the top, all the head injuries I could recall. My recollection and understanding of them was considerably better than it was, just six months ago. What came out of it was the determination that I’d had enough genuine concussions to do a fair amount of damage to myself. Forget about subconcussive events; the concussive events sufficed to cause plenty of problems, on their own.

It kind of threw me off for a day or two, and I got pretty stressed out and ended up pushing myself too hard, and then melted down in the evening. Not good. It’s hard, to hear that you’re brain damaged. It’s not much fun, realizing — yet again — that you haven’t had “just” one concussion, but a slew of them. And considering that I’m in this new job where I have to perform at my best, it really got under my skin. It’s taken me a few days to catch up on my sleep and settle myself down, after the fact. But I’m getting there. My past hasn’t changed, nor has my history. I’m just reminded of it all over again…

All told, I’ve sustained about eight concussions (or concussive events) that I can remember. Possible signs of concussion (per the Mayo Clinic website) are:

  • Confusion
  • Amnesia
  • Headache
  • Dizziness
  • Ringing in the ears
  • Nausea or vomiting
  • Slurred speech
  • Fatigue

Some symptoms of concussions are not apparent until hours or days later. They include:

  • Memory or concentration problems
  • Sensitivity to light and noise
  • Sleep disturbances
  • Irritability
  • Depression

I experienced most of these (except for nausea and vomiting, and not so much slurred speech, that I can remember) during my childhood and teen years. Not surprising, considering that I had a number of falls and accidents and sports injuries over the course of my childhood.

It’s pretty wild, really, how those experiences of my childhood contributed to my difficulties in adulthood — especially around TBI. I’ve been in accidents with other people who had the same experience I did, but didn’t have nearly the after-effects that I suffered. For them, the incident was a minor annoyance. For me, it was a life-changing concussion. A head injury. TBI. Brain damage. Geeze…

Thinking back on the course of my life, beyond my experiences with the accidents that didn’t phaze others but totally knocked me for a loop, I can see how the after-effects like fatigue and sensitivity to light and noise, really contributed to my difficulties in life. It’s hard to be social and develop socially, when you can’t stand being around noisy peers (and who is as noisy as a gaggle of teens?). It’s hard to learn to forge friendships with girls — who always seemed so LOUD to me(!) — or hang with the guys — who were always making loud noises, like blowing things up and breaking stuff — when you can’t tolerate loudness.

And when you don’t have the stamina to stay out all night… It’s a wonder I did as well as I did, as a kid. Of course, I was always up for trying to keep up – I was always game. And I wanted so very, very badly to participate, to not get left behind, to be part of something… That kept me going. I was just lucky to have people around me who were kind-hearted and intelligent and tolerant of my faults and limitations.

Anyway, I did survive, and I did make it through the concussions of my childhood. I have even made it through the concussions of my adulthood.  And I’m still standing. I didn’t get any medical treatment for any of these events, and the most help I ever got was being pulled from the games where I was obviously worse off after my fall or the hard tackle, than I’d been before.

But one thing still bugs me, and it’s been on my mind. During my high school sports “career, ” I was a varsity letter-winning athlete who started winning awards my freshman year. I was a kick-ass runner, and I won lots of trophies. I also threw javelin in track, and by senior year, I was good enough to place first and win a blue ribbon in the Junior Olympics. Which is great! I still have the blue ribbon to prove it, complete with my distance and the date. But I have no recollection of actually being awarded the ribbon, and I barely remember the throw. I’m not even sure I can remember the event or the throw. It’s just not there. It’s gone. And it’s not coming back. Because it was probably never firmly etched in my memory to ever be retreivable.

I’ve never thought of myself as an amnesiac, but when it comes to my illustrious high school sports career, when I was a team captain and I led my teams to win after win, I have all these ribbons and medals and trophies, but almost no memory of having earned them.

Which really bums me out. What a loss that is. When I hear Bruce Springsteen’s song “Glory Days” I feel a tinge of jealousy that the guy he’s singing about can actually recall his glory days. I can’t. And that’s a loss I deeply feel, mourn… and resent. Seriously. It sucks.

This could seriously mess with my head. And sometimes it does. But on the “up” side, it might also possibly explain why I’ve been such a solid performer over the years, in so many areas, yet I can’t seem to get it into my head that I am a solid performer. My memory of having done the things I did, in the way I did them, is piecemeal at best, and utterly lacking at worst. So, even if I did do  well, how would I know it, months and years on down the line? How would I manage to form a concept of myself as successful and good and productive and inventive and trustworthy, if I have little or no recollection of having been that way in the past?

It’s a conundrum.

But I think I have an answer — keeping a journal. Keeping a record of my days, as they happen, and really getting into reliving my experiences, while they are still fresh in my mind. If I can sit down with myself at the end of a day or a week, and recap not only the events of the past hours and days, but also re-experience the successes and challenges I encountered, then I might be able to forge memories that will stay with me over time. If nothing else, at least I’ll be making a record for myself that I can look back to later. And I need to use colors to call out the good and the not-so-good, so I can easily refer back to the date and see where I had successes and failures along the way.

Most important, is my recording of successes. I’m so quick to second-guess myself and assume that I don’t know what the hell I’m doing. And when I think back to the times when I overcame significant difficulties, I often lose track of the memory before I get to the end of the sequence I followed to succeed.

But I cannot let that situation persist. I need a strategy and a practice to reclaim my life from the after-effects of way too many concussions. I’m sure there are others in life who have had it far worse than me, but some of my  most valuable and possibly most treasured experiences are lost to me for all time, because I have no recollection of them.

No wonder my parents often start a conversation with me with the sentence, “Do you remember ________?”

Advertisements

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.