Okay, so this is interesting… I woke up today incredibly dizzy and feeling out of sorts. Sick on my stomach, wobbly… just not right. It reminded me of so many times in the past when I was almost unable to keep upright, and my temper was about as short as an icicle’s sojourn in hell.
Crazy. It didn’t make sense. I thought maybe I was having a reaction to the Italian sub I ate last night for supper – I haven’t had a lot of bread, lately, but last night I had a sub roll and also some crackers. So, my swearing off bread and wheat only got me so far last night. I did have a soda with my dinner, which is rare. But I can’t imagine that a root beer is going to throw me off this much.
I worked out a little bit this morning — I’m getting back into it, in a slightly different way that makes me feel really good. Instead of doing repetitions of exercises, I just pick up some weights and move around a lot, feeling the resistance at different places, and moving as much as I can in as many different directions as I can. My logic is that in the course of our lives, we never do single motions in one direction for extended periods of time – our whole bodies need to be coordinated and equally strong. So, my emphasis is on strengthening through continuous movements.
That made me feel better, and I noticed when I sat down to catch my breath and do a little measured breathing, I wasn’t able to breathe from my belly very well.
That told me something was up, for sure. In the past, I’ve been primarily a “belly breather”, and in recent memory I have not had big problems doing that. Today, though, it was just not working. And it occurred to me that my dizziness is probably directly linked to how busy I’ve been lately with my projects.
There’s been a lot of pressure — which I’ve put on myself, to make sure I follow through — and there’s been a lot of adrenaline pumping in the past weeks as I motor towards my ultimate destination. The pressure has been necessary — if I ease up too much on myself, I have a habit of just dropping things that I need to complete, so this has really been a proving ground for my future. I’m learning as I go, of course, and keeping my energy up has been an important part of the whole process.
Some, including my spouse and friends, would tell me to ease up, to not work so hard. That’s not an option with me, though. It’s just not. Sure, I need to be sensible about things and not wreck myself, but not working my ass off — that’s not for me.
So, on days like today, when it all catches up with me, I need to be smart about how I handle things. I had a good breakfast and got some exercise, and that helped. I also settled down and took care of some basic things that needed to be done, to clear the way for my work. I cleared off my desk, getting those extra papers out of the way, and I had my breakfast in the kitchen, instead of sitting in front of the computer. I also paced myself — gave up the mad-dash thing for the morning, and just plugged right through.
The nice thing was… as I did that, a lot of the incredible anxiety that gripped me all day yesterday lifted. I couldn’t get to sleep easily last night, I was so nervous and jazzed up over my projects, and that was one of the things that made it worse for me this morning, I believe — adding to my adrenaline overload, which really threw me off center.
So yeah – I have been incredibly busy and driven for weeks — months, in fact. And it takes a toll. But I can’t let that stop me. It can certainly inform me and cause me to make different decisions, but it’s not going to derail my plans. That will never do.
That being said, I’m going to take the rest of the day off from my projects — to enjoy the Fourth of July and run some errands for other things that are going on. I’ve got three more days ahead of me to work-work-work, and two of those days I’ll have the house to myself, so I can buckle down and really kick it. I have a bunch of things I need to get sorted out, but all in good time.
Busy-busy-busy can lead to dizzy-dizzy-dizzy. So for the sake of my safety and well-being, it will do me good to pace myself, take frequent breaks to regroup, and not undermine myself with blind and mindless activity.
As I sit here in bed, surrounded by my flu meds and fluids, I have plenty of time to think about things I normally don’t, in the course of my busy everyday life. The (not unexpected) news that Junior Seau had CTE at the time he shot himself in the chest, last May, has been on my mind. A lot.
And as I’ve been weighing the pros and cons of going back to work in time to work a professional conference (we’re talking about 5 solid days of being on my feet, running and working and also doing a presentation for a colleague who can’t make it), I have to wonder what in hell’s namemakes me think I should even consider doing this?!
Seriously, it would be madness for me to dive right into that. See, the whole conference thing also includes air travel. In an enclosed aircraft. During one of the worst flu outbreaks in something like 10 years. And it includes being surrounded by thousands of people from all over the country, some of whom may be sick, themselves. And it includes going-going-going for 12-14 hours a day, for 5 days straight. I’ve worked this event twice before, and even when I was hale and hearty and feeling fine, I was completely wiped out by the end. If I push it, this time, then what? I end up back in the hospital?
Am I insane?
Actually, no. I’m just in the habit of pushing myself. Because unless I push, nothing gets done. See, this is what most people don’t get about me and my situation. I cover things up really well. I mean really well.
Who would ever guess that on any given day I could wake up being so wobbly and off-balance, that if I don’t maintain some contact with an upright surface, such as a wall or a piece of furniture, I’m going to fall over? I’ve learned to mask that extremely well, being ultra nonchalant as I stroll along at a “leisurely” pace. I’ve learned, over the years, how to keep myself upright by keeping a very straight posture – which is probably why some people assume I have a military background – I don’t, they just seem to assume that if I stand up straight I must have been trained. Actually, I have been trained – by life. Because I’ve learned the consequences of not keeping my posture aligned, and it’s no damn’ fun.
And who would ever guess that the “cool shades” I wear are not at all for style’s sake, but to keep myself from losing it over the bright lights all around me? I wear sunglasses in the winter as well as the summer, because the snow is even more glaring on me than summer sunlight. Some days, when I am really tired, any variation in light – a sudden flash or a bright piercing sunbeam – can set off klaxon alarms in my head.
Noise, too — there’s nothing like having the voices of your loved ones turned into spikes driven into your brain, because you’ve reached just the right level of fatigue and sensory overload. Not being able to listen to the songs sung by one of your sibling’s kids, when they just put something on YouTube and they want to sing it for you in person… that’s a pretty lousy way to spend a Christmas afternoon. Of course, you can’t let on that you’re baked, you can’t tolerate any more noise, and if anyone says one more thing to you, your head is going to implode. You just suck it up and move on. You think of other things. You put on a happy face. You keep going and keep smiling.
Because that’s what everyone needs.
They don’t need to know the gory details of how you haven’t been able to sleep a full night for months, now…. and how everything that touches your skin feels like it’s burning through to the bone… and how the ringing in your ears is drowning out everything, which is why you have to keep asking people to repeat themselves… and how you haven’t actually understood much of what anyone has said to you for the past two hours, and most of the stuff you did understand, you’ve since forgotten. People don’t want to know about that. They don’t want to know about the increasingly frequent memory lapses, the flawed judgment calls, the time management issues, the distractability. They don’t want to hear about how bone-tired you are, how confused you are, how frustrated you are with every damn thing that comes across your path.
They don’t want to know you’ve been simmering at a near-boil for days on end, now, blowing up at the people closest to you, because you’re so fried by all the sensory overload and the fatigue and the defeat of never being able to out-run or out-maneuver these things. They don’t want to know that as much as you might get a bit of relief, now and then, the issues will still be back later, and you can count on that. They don’t want to know about the jumpiness, the hair trigger temper, the flashes of rage that tear through your insides like fire across a dry prairie. They don’t want to know about how you’ve used just about every “tool in your toolbox” to keep it together, but things are raveling just a little bit thin, these days.
Nope. They don’t want to hear about that — any of it. Especially if they know you as a can-do type of person who always manages to figure things out. If you’re the go-to person in their life, they depend on you NOT being any of the things you actually feel like, day in and day out. And God forbid you should ever speak up and ask for some help.
Because when you do that, they either laugh at you, or they get freaked out, because nobody — but nobody — can seem to hear anything about TBI or concussion or any other sort of brain issue, without thinking about themself and questioning themself and confronting the bare-ass fact that deep down inside, the heroes are still human.
I’ve been a hero for a long, long time. At work, I’ve often had a sort of “folk hero” reputation for having accomplished the things I did. Because I never gave up. Because I looked the beast in the eye and still moved forward. Because I took on projects that others ran from, and I made it all work in the end. I’ve been a champion for as long as I can remember, and I’ve been rewarded for it, too.
So, when I fell in 2004, and that all started to unravel, the hammer came down pretty hard. I was failing. I was coming up short. I was not living up to expectations. And that was unacceptable. People talk about how you shouldn’t be afraid to fail, how you shouldn’t be afraid to come up short sometimes. Those people write books for a living, clearly, and they obviously don’t have their level of compensation and their family’s welfare on the line, every time they are tested. Those people piss me off. Because the ones who write our paychecks (and often have us by the short-n-curlies) attach a price to our performance.
Not only that, but the whole world around us attaches a price to our performance. And this is the thing that makes me absolutely nuts about the people who go on and on about how “formative” failure can be. Yeah, homelessness is formative, too. As is long-term unemployment. The price of failure in today’s world is NOT just popularity — is is your very way of life. It can even be your life. Period.
And how much moreso for someone like Junior Seau? Someone on whose shoulders so much rested — the restaurant, the foundation, the reputation…. Someone who had flown so high, and was never going to fly that high again, as far as he could tell. To grapple with the things I’ve got going on, in my low-profile life as just-about-nobody, is hard enough. But to do it in the glare of the public eye? How the hell do you do that?
Maybe, you just don’t.
And in all the talk about Junior Seau’s death and CTE and changes that need to be made to football, the thing that’s been missing for me — the big, big thing that seems like it might actually make a substantive difference in all this — is how people with brain injuries are treated… How anybody who doesn’t “measure up” is treated by once-adoring fans. Once you set the bar high, it’s your job to keep out-doing yourself and keep it moving ever upwards, ever onwards. But that’s a fantasy and a myth born of Hollywood and personal improvement gurus. And it puts the onus of keeping your shit together on the person who might actually need the most help.
If the truth be told, we live in an exacting and unforgiving society. I have no idea how we got to this place, where everyone seems to need to believe they are invincible — or could be. And I have no idea how we have created a culture where it is perfectly okay to punish those who don’t live up to our expectations, as though they were homicidal criminals. Life is full of disappointments. And yet we carry on as though we should never, ever be disappointed, and we should always get exactly what we want, because we “deserve” it.
What exactly do we “deserve” anyway? That others meet our fantastical expectations in every way, until the end of time? Who says anyone owes us that? Who says we are entitled? The thing of it is, most of us structure our lives around the roles we play and the ways we fit into each others’ lives, within those roles. So, when our abilities change and we need to adjust our roles, it can be terribly frightening for others to deal with us. Because a change to us is a change to them. And if they’re not ready to shoulder more of the “load” of making sense of life with their own resources (rather than ours), then the loss of our presence in their lives in that certain role, can be terribly frightening, disorienting, almost incapacitating.
How very human of us.
I guess in the end, there are no easy answers, and it’s simple enough to get upset and pissed off over sad things that should never have happened, but did.
When all is said and done, the fact of the matter is, some of us are hero material. For one reason or another, we have learned how to push ourselves through thick and thin… and come out victorious on the other side. Some of us know how to put aside our own personal safety and well-being for the sake of others. And some of us are in the habit of doing that on a regular basis. Now, I’m no firefighter or first responder or doctor without borders, but I am in the habit of putting the needs of the many over my own individual wishes and needs. And it’s served others well over the years.
Now, with this flu still raging, I’m doing a reality check and seeing quite clearly that this is no time to be a hero. If can’t do the job at the conference next week, someone else is going to have to take my place. There may be others working the event who are also sick and choose to work it, anyway, but this one I’m going to have to sit out. I hate the idea and it goes against everything in me, but I’ve just got to do it, this time.
It’s not what I want. And it’s not what the folks I’m working with want. But it’s what’s got to be done. This one time, I don’t have to be a hero.
It talks about definitions of mTBI and common symptoms, and it talks about different approaches to take to treat them. What a breath of fresh air — which is probably not the sort of thing that often gets said about the U.S. Department of Defense.
Included in the topics are:
Management of Concussion/Mild TBI
Management of Headaches
Management of Other Symptoms
Management of Dizziness and Disequilibrium
Management of Fatigue and Sleep Symptoms
Management of Vision, Hearing and Olfactory Symptoms
Management of Irritability
Management of Appetite Changes and Nausea
Cognitive Rehabilitation for Mild TBI Consensus Conference: Summary of Clinical Recommendations
Driving Following TBI Conference: Summary of Clinical Recommendations
It’s really great to see these pieces of information collected in one place, in a pocket-size format (although on my computer, I look at it full-screen, so it’s not in pocket form for me right now).
I’m particularly interested in reading what they have to say about dizziness and disequilibrium, because that’s been such a big issue for me for so long. Being dizzy has wreaked havoc with my health and mental state more than I can say — I used to have such a hard time staying upright, I’d flip out over every little thing, and I couldn’t talk to anyone, first thing in the morning, while I was trying to get ready for work. I had to focus so intently on what was in front of me, and not falling over, that if anyone spoke to me while I was getting dressed or making my breakfast, I would lose it.
Seriously, I was a friggin’ bear to deal with, first thing in the morning. For years. I feel sorry for all the folks who have had to deal with me, when my vertigo was at its worst.
Being dizzy and losing my balance didn’t help, back in 2004, when I was standing at the top of some stairs and my spouse called for me to come get something. I had no business standing at the top of those stairs in stocking feet, but I was… and in the space of a minute, I was lying at the bottom of those stairs in a foggy daze, not quite sure how I got there, but remembering quite clearly the BAM-BAM-BAM of my head on the steps as I went down.
Anyway, enough dwelling on the past. I’m getting back to balance, I must remind myself.
It never actually occurred to me that it was abnormal to be so dizzy all the time, till I started talking to folks about my recurring intense vertigo a few years back. I had told one of my past doctors about being super-dizzy when it was particularly bad, some time back. They just put me on meclizine, which did absolutely nothing for me at all. It didn’t even take care of the nausea.
Looking at the Pocket Guide, I see that pharmacologic treatment has not been shown to be effective in chronic dizziness after mild TBI. A ha! There it is — a possible explanation for why meclizine works for friends of mine who have vertigo, but it does nothing other than make me even more numb and whacked than I already am.
Of course, at the time I was seeing that doctor (I have since moved on – they were a bit too pill-happy for my likes), I didn’t know about my mTBI issues, so I was just another medical mystery that they shrugged their shoulders over and sent away with some comment about how I’d just have to wait it out.
Interestingly, I’ve never been examined specifically for dizziness and disequilibrium. With me, it tends to come and go — it’s worse when I’m tired or I’m fighting off a cold or I eat something with dairy ingredients in it. And of course, I’m often just peachy keen in the dizziness department when I go see my doctor.
So, I’m kind of on my own in this. But reading further, it looks like I’ve been doing the right things for this. They recommend:
Perform neck stretches — I do this, especially in the shower in the morning, when I can get really hot water on my neck and shoulders. That makes stretching easier. I also stretch before going to bed, which helps me relax and get to sleep.
Modify activity and change positions slowly — I’ve had to do this by default. I learned the hard way a bunch of times… moving too quickly and changing positions quickly when I’m dizzy is a recipe for extensive bruising, not to mention panic. Both are less than optimal.
Change sleep position — I started sleeping on my back a lot more, a few years back, and it seems to help. But there’s nothing like just rolling over and going to sleep.
Perform vestibular rehabilitation exercises — I do my morning workouts, and I’ve been adding more balance work to the mix. I have been doing this crazy-hard move (sometimes holding onto something while I do it) — I stand on one foot, and raise the other leg up, with my knee bent. Then I bend over and touch my left hand to my right toe, and vice versa with my right hand and my left toe. Not only does it really work my legs, but it’s also incredibly difficult for me to do. I’ve gotten to the point where I can do it without hanging onto something, but it’s still hard. I may be fooling myself, but I seem to be able to tell a difference in my balance, since I started doing this.
I’d like to add to this:
Keep yourself from getting sick and congested (my ears really do a number on my balance, when I’m congested)
Avoid dairy (or other foods you may be alergic to). When I cut out dairy, it cut my balance issues by 2/3. No kidding.
I still have issues, now and then, but they’re not constant, so I notice them immediately and I do modify my behavior. I avoid standing at the tops of stairs for too long. I also pay extra attention when I’m going down stairs or doing other balancing type activities. I also don’t go running around out-of-doors, climbing on rocks and jetties like I used to. (What a loss that is — I used to love to climb and jump and hop from rock to rock, but my better sense has prevailed in that — somehow, not getting hurt again is worth the cost.)
Yeah, taking steps to avoid problems has become a more regular part of my life over the past couple of years. Maybe I have a better appreciation of the risks I run. That’s certainly true. And I’ve also gotten in the habit of doing things that will help prevent future injuries, not just avoid them. Like working out. And working on my strength and flexibility.
Balance for me seems to be as much about muscle strength, coordination, and mindfulness as what’s going on in my wiring/inner ear. The stronger I get, thanks to my workouts, the more balanced I feel. I’ve notice myself becoming more coordinated than I was before. I’m sure it’s a combination of things, not just my brain/wiring. But I have been noticing an improvement.
Of course, there’s always the occasional flare-up — sometimes out of nowhere, for no reason that I can tell. But as long as I keep an eye out and I pay attention, I have a chance of staying upright — and doing things that will keep me that way… or at the very least, keep me from falling over.
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:
Ringing in the ears
Nausea or vomiting
Some symptoms of concussions are not apparent until hours or days later. They include:
Memory or concentration problems
Sensitivity to light and noise
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 ________?”