Keeping Quiet Can Keep You Out of the Game

But what do I really want to do?

I’m in a quandary. The job I’m in, while a step up for me, is not going… it’s just not. Leadership at work is being swapped out, and there’s a full-on political war brewing. The body count is starting to rise.

I don’t think I’m up to the skirmishes, frankly. I’ve been on the receiving end of some pretty vindictive crap, lately, driven at least in part by the fact that I’m actually getting things done, while others are simulating effectiveness. And they seem to think I’m making them look bad.

But in other ways, I’m not quite living up to my promise. I have been having some trouble finishing things I start, and the disparity between what I say I’m going to do, and what really gets done, is a little stark at times. It’s tough, because there is only me working on my projects. I have no team, I have no teammates, I have no support. And the project I’m in charge of is incredibly unpopular in certain camps.

One of the big problems I’m having, is that I just don’t have my heart in this work, anymore. The company morale is very low, people are unhappy and in-fighting, and there doesn’t seem to be a light at the end of this tunnel. The work I used to love to do, has become a chore, and it’s a shame. Because I love the work. I do it on my own time, in my own way, because I love it. I do it a lot, and I don’t get paid for everything I do for this company. Hours upon hours of work… for the sake of the work.

I’m really feeling boxed in. I want to love what I do… again. I want to love it because I love it, not because someone else tells me to do it. In a way, I wish I didn’t have the stuff I love be part of what I do for a living. Making it part of my job — a job I do for a company that tends to mistreat me and everyone else working there — sours the experience, and I’m left feeling resentful and angry… when I’m doing the work I love to do most.

Sigh… I guess I need to look for a new job. I actually did some searching today and found a couple of possibilities. Polished my resume and sent it off to a couple of really good co’s in the vicinity. We’ll see what happens. All I know is, something’s gotta give, and it’s time for me to move on. I’ve taken this ride as far as it can go, and it’s time to look into other options.

I’m sure it sounds strange, that I’m talking about going out and finding another job in this economy, but if you know where to look and you have the right skills (which can be learned for free, by the way), you needn’t lack for work.

What do I want to do?

Telling stories

I’ve been coming across a lot of references people are making to telling stories… what stories we tell ourselves, what stories others tell us… what stories we want our lives to embody.

Once upon a time, I was big into stories. I wrote constantly, and much of what I wrote was stories — fiction, non-fiction… just accounts that were meaningful to me. Sometimes others found them meaningful — when I showed them to others. Most of the time, I kept them to myself. They were my stories, and I didn’t want  anyone else meddling in them.

I continue to write, but now I share my stories. I do a whole lot more writing online, than in my onetime journals, and it’s good. It’s a good development. Looking  back at all my past journals, I’m amazed at how circular I was — rehashing the same topics over and over and over and over and… well, you get the point.

I have that problem a lot less, now that I’m putting what I write out in public.

Keeps me honest.

It’s good for me.

And I’ve been thinking it might be good for me to do more of this writing — along different lines. I’ve written books before, and it’s strangely easy for me to collect several hundred pages of words that hang together well. I’ve written under pseudonyms, to keep my writing identity safe and sound, and the material I’ve written has gotten good reviews from some. And I think it might be time for me to write about growing up with TBI. I’ve been looking around some, and it doesn’t appear that there’s much literature out there about kids with head injuries — especially from the point of view of the child.

The books that I have come across about kids with TBI have been either non-fiction (I did find a really good one, the other week), or they’re biographical accounts/personal stories from the point of view of parents. Not much — that I’ve found — has been written by people who grew up with TBI.

Could be, people just want to put it all behind them and forget about it. I could see that. I feel that way, myself, sometimes. But then I think about all the parents and the kids out there who have experienced TBI — especially concussions in sports, which is so common — and I think, “Maybe this is something I need to NOT put behind me. Maybe it’s something I need to put out there in front of me.”

I’ve been feeling incredibly emotional, lately. My life is undergoing some significant changes, with my home life shifting and taking on new aspects of independence for both my spouse and me, and my job not being the most wonderful experience in the world. I’ve been waking up regularly at 3 a.m., with this nagging sense that I need to make some changes… just what those changes are, exactly, I’m not sure.

I know what I would like to do — have a lot more freedom to move and breathe and travel and enjoy my life (I haven’t had a real vacation in quite some time). I would really like to devote more of my time to this work of educating folks about TBI, writing about my life, informing people of the important details, helping survivors better understand themselves and manage their issues, and reassuring worried parents and spouses and friends that things don’t have to end badly. There is hope.

Yes, I know what I would like to do. I’m just not certain how to get there.

But writing this book will be a start. Yes, I think I’ll start here.

The challenge of civility

If the way you think of things does not feel the same way that others interpret them, what then?

If the way you express what you think does not fully register with others, what then?

If your outward demeanor and your modes of communication come across completely different from how you intended, what then?

I started out the day with the best of intentions, but for some strange reason, I have been dyslexic at the keyboard — words are inserting them in different order than I am thinking them. Letters, too.

What now?

Shall I stop?

Quit?

Give up?

Go back to bed and hope for something better in the morning?

Do I hobble myself, for fear that walking may lead me into a swamp?

Do I hold back, for fear that others will think poorly/less/angrily of me?

In the land of TBI, it’s as easy to be misunderstood, as it is to misunderstand. Even those without neurological complications can’t seem to get it right. Just look at the world. Google “news” and witness the evidence.

And when you’re in a room full of people who have been on the receiving end of prejudice, bigotry, discrimination, marginalization, and less-than-ation, (which is just about everybody) simply putting a single sentence together can feel like tip-toeing through a minefield.

No harm… no harm intended… things are tough. Life is hard. For everyone, in some way or another. To say so, sounds like an insult to some. To others, it is refreshing truth.

Where do we draw the line between acceptance and surrender, and giving up?

Where do we draw the line between coddling and compassion?

Where do we draw the line between respecting the views and limits of another, and not bothering to encourage them to do better?

Where do we draw the line between:

“you can’t… right now, but if you keep working, you may be able to in the future”

and

“you can’t… right now, and it may not be worth your trouble to keep trying”

and

“you can’t… ever, so why bother trying?”

?

It’s all matters of degrees. And none of us has it easy, these days. Least of all when we try to communicate with one another.

What now?

Well, I sold my bikes

A number of years back, I bought a couple of really nice bikes — one road bike for the kinds of long trips I used to take, one hybrid that was more for riding on bike trails in the countryside or at the beach.

But after having them sit in my basement for years on end, I couldn’t take looking at them anymore. So, I sold them to some very appreciative folks who I am certain will give them good homes.

When I bought them, I had every intention of getting back into riding regularly. My schedule was freed up, and I had a lot of motivation. But I discovered that when I rode, I was pretty distracted by all the visual and audible input around me. And riding on back roads made me pretty nervous.

So, I stopped riding. Promised myself I’d try again later… But that never materialized. I could never seem to get past the anxiety of riding, the distractions of the road, and the potential danger of traffic around drivers who weren’t paying attention.

Letting them go was probably one of the harder things I’ve done in the past few years. But now that it’s done, I feel a certain sense of relief. I can now walk down into my basement without looking at the bikes and thinking, “When will I get back out there?” I can go on vacation without having to ponder the pros and cons of bringing a bike with me. I can do a lot of things now, without that extra consideration to noodle over.

And that’s fine. Because as much as I wanted to believe that I was going to get active in that way, fact of the matter is, my life has changed and I’m better off doing other things. And frankly, even if I was fine with riding on roads and being out and about on a moving bicycle, I probably still wouldn’t do it. Because I’ve got lots to do, and less time than I’d like. I just don’t have the hours to spend on back roads, anymore.

Time to move on.

And it’s fine.

Thanks, but I think I’ll pass on the knitting

This is a sort of follow-on to my last post about extreme sports, extreme living, extreme dying.  Apparently, the extreme sports athlete in me is feeling antsy. Maybe it’s the melting snow — where did it all come from, anyway? But I’m getting distracted (again ;) )….

Recently, a reader whose opinion I really value offered me the following advice:

… take a deep breath. Go for a walk and pet every dog you meet. Plant flowers. Sew. Get clay and make things. Knit. Bike ride. Join a running club. Volunteer at a homeless shelter. Listen to the video of the vets with TBI’s. Get angry and then forgive yourself.

I did part of what they suggested — I checked out the video of the vets with TBI’s, and I got angry. I also forgave myself — just because. I’m not sure what for, but I forgave myself.

Still, I have to say, I won’t be petting every dog I meet along my walk. I’ll likely be walking in the woods, crossing terrain I usually can’t cover in the summertime. Planting flowers, sewing, making things out of clay… knitting… riding bikes… volunteering… While those are things that may appeal to some, for me, they just don’t do it.

I’m built differently than that, and I need more excitement than that for my life experience. I’m much more of an out-there kind of person. Am I an extreme experience junkie? Perhaps. I prefer taking myself past where I’m comfortable, and seeing what all the world has to offer.

I just cannot seem to bring myself to just settle down and do quiet things that feed my spirit on a very simple manner (“simple” in a good way, not like “stupid” or “simple-minded”).

It just isn’t who I am.

And I have to go with who I am. I understand what folks are saying about needing to accept myself and my limitations, but again — I’m back to the idea that we needn’t just abandon the core, vital parts of ourselves because our brains have been injured.

Part of what’s piquing me about this, is the photo presentation I watched the other day on brainline.org that was done by a brain injury support group in Massachusetts. Part of the presentation was about acceptance. Another part was about chaos. And you know what? Although I could hear what they were saying, I also had this overwhelming sense that the things they were accepting and acclimating themselves to were totally avoidable and fixable.

As in, if your apartment is a wreck, and it gets to be a wreck on a regular basis, do something about it. Make notes about where to put things — use labels, like that one person does. Make a commitment to clean up after yourself on a regular basis. And if you can’t do something about it yourself, get help. Don’t just sit there in your own chaos. Get up and do something about it. Clearly, if you can tell that your place is a mess, you can tell that something needs to be done about it. So, do something about it! Don’t just sit there in your mess! My God, man/woman — have some self-respect!

I’m not saying this to be harsh. I’m saying it because it needs to be said. TBI survivors need to be encouraged to be fully human, wherever and whenever possible. Sure, things may change, but how is sitting in your own chaos truly a reflection of who you are and what you deserve from life? We ALL deserve more. Encouraging people to put up with things that are either avoidable or fixable is akin to killing a part of them. And we need to not do this. The truth sometimes hurts — but it can be a good hurt, especially when it lifts us out of our self-pity and self-sabotage, and ennobles us as full human beings.

Okay, I hear you saying I’m being too hard on people, and I need to have more compassion. Well, that’s what I’m doing — having compassion. As in, not giving up on someone because they have a head injury. Trust me, I sat in front of my computer for hours each day, for weeks and months on end, after my latest TBI… doing nothing… staring straight ahead, not remembering people who came into my cubicle (who clearly knew me), attacking everyone who came within earshot, crying for hours at a time, spending all my money, taking no time to advance my skills and keep myself sharp. It took months and years of tough determination and very hard lessons, to get past it. But you know what? I did. And while things aren’t perfect, and I have a long way to go, I’m a far sight better off as I am now, than if I’d just accepted my memory issues and my disorganization as “how it was”. I often wonder what might have happened, if I’d actually had someone around me who could offer me help.

It’s quite exasperating for me, to watch and hear how some folks just give in. Especially when they’re a far sight less impaired than the veterans who are struggling and fighting each and every day to get the use of their limbs back. In some ways, I suppose it’s almost harder to handle the little glitches that come with mTBI — they’re less obvious, and you tend to not get the help you need. But if you can discern your problems, and you can tell it’s a problem, it seems to me you are in a position to ask for help in fixing them.

A lot of it comes down to philosophy, I think. That, and what you think the purpose of human life is, on a very fundamental, soul level. Why are we here?

Why bother having these experiences, if we’re just going to retire to the background? Why give in?

Why?

Me… I choose something different. Today, on the holiday, I choose to put some hours in at work, so I’m more caught up for the rest of the week. Sure, I have to work harder and longer, but it sure beats being constantly taken by surprise ;)

Extreme Sports… Extreme Living… Extreme Dying

I’ve been thinking a lot about extreme sports and TBI, of late. Just this past week, Nodar Kumaritashvili, a Georgian luger, died on the Whistler track in Vancouver during an Olympic training run. I watched a graphic video of it on CBSnews.com, and it’s pretty wrenching. He lost his sled in a turn, flew off, and went into a pole.

I have heard it said that he was relativley inexperienced. I have also read that he told his father he was terrified of the track. And I’ve read discussion and debates about how lugers and other winter athletes know the risks, but they choose to focus on the goals, the rewards, the prizes that come from winning. If they give into fear or they hesitate, all may be lost.

At the same time, I’ve been reading a bit about Kevin Pearce, the snowboarder who sustained a traumatic brain injury on a halfpipe during a training run. ESPN’s headline seemed to downplay the injury — Pearce hurts head training on halfpipe. Other news told a more sobering story — critical condition… moved to a brain injury hospital in Denver, where he’s making better progress than expected, actually walking and responding.

Only folks who understand the impact of TBI — more than what many folks think of as “just a concussion”… more than “just” a bump on the head — will fully appreciate how much progress Pearce actually is making. Most folks may very well wonder what the big deal is. If Pearce is doing that well, yes, he is making amazing progress. It probably helps that he’s an athlete.

Over the past holidays, one of my nephews had a fall from about 6 feet up. He landed hard and was addled afterwards. I wasn’t there to see it happen. And everyone else who was there just let it slide. According to my nephew, he’s had about 12 concussions. He’s into extreme sports. He skateboards and is an all-out outdoor enthusiast. He’s a great kid — kind and soft-spoken and quite polite. His mom has done a great job with him, I have to say.

But I worry about him. I wonder about him. He’s fine now, but what about in the future?

I look back on myself at his age — 13 and rarin’ to go. Immortal, as far as I was concerned. Untroubled by hard falls and spills and being knocked silly, every now and then. I played hard and fast, and I didn’t follow instructions about being careful. That was for sissies. Wusses. I had a game to play, a goal to reach, and nothing — no timidity, no fear, no trepidation, no namby-pamby wuss — was going to hold me back.

And I think about the concussion prevention/management legislation that’s been proposed in multiple states — some of it requiring medical clearance before kids who have head injuries are allowed to play agan. I wonder what kind of an impact that’s going to have at all — if it may in fact cause more dangerous cases to go unnoticed. I can tell you from personal experience that when I was a kid,  if I thought I was going to be told to sit out a game I wanted with all my might to play, I either lied through my teeth to convice my coach that I was okay. If, that is, I even realized that I was having problems. A lot of times, I didn’t. Or, if I did, I ignored it and played through.

It’s really, really hard to explain what it’s like to get your bell rung in a game, and not be able to think well enough to protect yourself from further injury. It’s like, you know there’s something up, but you keep going, keep playing, keep pressing on. You don’t want anything to stop you, and sometimes the more your bell is run, the harder you push through.

You should sit down. You should rest. Part of you knows that. But there’s this other part that’s very go-go-go that gets jammed in gear and you can’t disengage. Even when there’s this little voice in the back of your head telling you that you need to take a break… that something’s not right… your coordination is off… you don’t have the same control you did, just a few minutes ago… still, you’re jammed in gear, and like the jammed accelerators in pre-recall cars, accidents can happen as a result. More accidents. Just when you least need them.

It’s a tricky, tricky thing, trying to stay safe when you’re just trying to play and have a good time. The Olympic athletes who sustain injuries (or are killed) during training runs… some folks would consider them foolhardy and blind to do the things they do. But when you’ve been pushing the limits, going faster, farther, higher, for years on end, you sharpen your taste for breaking records, pushing past limits…. and with each successive broken record, the bar is set higher. And higher. And higher.

It’s a wonder anyone survives at all, quite frankly.

But here’s the thing — all those stress hormones pumping through the body, all that adrenaline running in your veins, all the hype and pump and competition… they literally change you. They change your brain, they change your body. Just ask people with PTSD — a super-extreme version of what happens to you over years and years of intense extreme sports experiences. Your brain gets used to the pump. It craves it, actually. And if you’ve been marinating in that hormonal soup long enough — and have gotten plenty of rewards from pushing past your limits — pushing through till you’re breaking through becomes very much a part of your person.

And without it, you’re lost.

Literally. It’s not just some psychological “addiction” to the thrill that’s at work. It’s a fundamental, integral part of who and what you are — a piece of your puzzle that has to be fitted into place, in order for you to feel even remotely human. Someone who is at their best when they are pushing the envelope is going to continue to seek out those situations where they can push through, because they want to be at their best. Especially when they are an athlete — and a world class one at that. We athletes want to be the best we can be. We want to perform well. We need it. We crave it. We must have it. If we can’t get it, then who are we? Just another schmoe sitting in a cubicle, answering phones, or wearing an apron and telling people where they can find the plumbing supplies.

It’s not that the athletes (and other high-performers) of the world can’t deal with regular life. We just operate at a different level. And to get to that level, you need an element of risk to sharpen the senses. You need a bit of an edge. And if you don’t have it… can’t get it… then it’s not just your performance that suffers. It’s your very self, your very core, your very interior person, that suffers, as well.

It’s not just thrills we seek. It’s not just mindless risk that we’re addicted to. Those of us who are peak performers — whether athletes or stock brokers or CEOs or award-winning writers, scientists… whatevers — need a little extra something to stay on top. We needed it to get there, and we continue to need it to stay there. To do anything less than push past our personal best, is to fail to be the persons we are. Some of us turn to drugs. Some of us turn to foolhardy decisions. Some of us turn to adultery with easily recognized flings. Some of us bungee jump. But the need and the drive is the same — seeking the edge, so we can find ourselves. So we can be ourselves. So we can be more of who we have become over time, over years of progressively more advanced tests, and progressively higher risks.

Deathwish? No.

Lifewish – yes.

Now, I know my psychotherapist friends would argue this point with me. BUt you know what, none of them are — or ever have been — athletes. They are not particularly active, to begin with. Understanding what would cause someone to lie down on a small sled and hurtle downhill at 95 mph with just a helmet to protect them… or what would induce someone to snowboard high in the air and do flips and twists… well, that takes a certain kind of experience. Physical experience. Physically extreme experience. Now, I’ve never been attracted to extreme sports that involved fast speeds and heights (my balance has never been good enough for me to go there), but I do know what it’s like to push myself as hard as I could go for 3.2 miles… or around a track 8 times… or down the final stretch of an 800 meter race… or down a runway with a javelin in my hand. I do know what it’s like to practice in all kinds of weather and push through, no matter what. I also know what it’s like to lay it all on the line, time and time again… to reap the rewards of success… and to suck up the dregs of failure and start all over again — next time working all the harder.

It’s not about some psychological death wish. It’s not about having no sense of imminent danger. It’s not about any conscious thought process, other than focus on the end-goal, the prize, the medal, the reward. On some level, it’s not even a mental process at all. It’s a physical, spiritual, metaphysical process to which the mind must be subservient. And as such, there will always — for some of us — be an element of terrible risk… risk of immediate death or eventual debilitation.

And until people figure out how to get that “high” (that insulting slight of a term for what is a complex process) from a safe and secure place, there will always be mortal danger for the best of the best. We don’t just like that pump; we need it. We must have that rush that gets you thinking better, cogitating more clearly, and feeling like you’re alive again. Until people acknowledge this as a valid human need and figure out how to help us get it without putting our necks on the line, the only way to get that will be through more risk, chancier actions, and increasingly dire danger.

After all, if you can’t live fully without that biochemical pump, and you can’t stand how you feel without it, the prospect of being hurt — or dying — while marinating in that soup of fully alert humanity, probably seems worth the risk.

Storms come, storms go…

The one storm that never seems to completely go away is the one that rises up in me and riles up in me when I think about how lack of information — simple lack of information — makes life that much harder.

In this day and age, when database architects and sys admins and db admins are a dime a dozen… when countless folks like these are languishing unemployed… when the expertise to design and implement decent knowledgebases is in abundance… when we have the skills and the expertise and the accumulated knowledge of countless studies and the truly dire need for that information to be rendered in usable fashion, and yet no adequate brain injury resource database, knowledgebase, or other kind of base, yet exists in an easily accessible and freely available form… just thinking of it makes my blood boil.

And the storms rise up again. The storms rile up again.

  • 5.3 Million Americans are currently disabled by a traumatic brain injury
  • 1.5 Million Americans suffer a traumatic brain injury each year
  • 80,000 Americans sustain long-term disability from TBI each year
  • Every 21 Seconds, someone in the U.S. suffers a traumatic brain injury

How is it that this does not warrant more attention and care?

How is it that this does not receive more service?

How is it that someone — anyone — hasn’t gotten their act together enough to — at the very least — educate the general public about what TBI is all about.

But I’ve been storming for most of the evening… following after a fairly stormy afternoon that was whipped up for other reasons. And it’s getting late. I need rest and relaxation and equanimity now, far more than I need to continue to fret over this and that and the other thing… things that will not change, due my fretting alone.

Vexation is fine, if you have the time and energy for it.

Me? I’m off to bed.

Big week, big meltdown

Oh, my… I had a really big week, this past week, making big changes and lots of progress. And getting so caught up in the excitement, I didn’t rest adequately.

And I ended up spending most of the afternoon in meltdown mode. I hate when that happens.

When it does happen, the only thing to do is go to bed.

So, I did.

I’m a little better now, but I’m still a bit fragile.

At least it’s a long weekend. Thank heavens for that.