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 name makes 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.
2 thoughts on “TBI Heroes – ‘Cause that’s how everyone wants it”
I only wanted to say two things about this post. One is that this is probably the BEST piece you’ve ever written. Strong, poignant, very true, even touching.
The second is a sentence you wrote “the thing that’s been missing for me (….) is how people with brain injuries are treated”. I understand what this sentence means, but somehow a different interpretation of this sentence rose from somewhere inside me.
I believe that one of the WORST things that can happen to TBI survivors early on in their ordeal is the way they are “treated”, and by treated I mean medically treated.
It has been my experience – and I would love if you or some of your readers would contribute with their ideas – that it was always very difficult, and it still IS, more than ever, to find ‘enlightened’ professionals in the field. Even when I found out on my own that there was a HUGE quantity of information about the brain functioning and the TBI mechanisms available on the internet, I would consistently be shocked by the fact that the doctors I went to (neurologists, above all, but also ear doctors, psychiatrists, cardiologists, my general doctor) only had very sketchy and generic information on what a TBI is, you know, the usual 7 to 15 lines of text you find in every TBI-related “guide”. It seemed that maybe for bad luck or bad astrological configurations I wasn’t able to tap into any part of that massive body of knowledge. I was consistently dismissed, consistently misunderstood, consistently misinformed and even misled by the doctors. I even went so far to not wanting to go to doctors anymore.
This is NOT acceptable. If people receive a proper, enlightened (I’d love to stress the word enlightened, because some TBI people are particularly intelligent and gifted and doctors should be able to keep up, considering how much we pay them), sympathetic, humanized, attentive type of care from early on they WILL have better prognosis in the end. Yeah, yeah, we know that the brain is a mystery and there is no way to predict how its cells are going to repair themselves, if they ever do, but aside from the obvious and from we ALREADY know, we need to be guided and at least advised. If I go to a psychiatrist who does NOT have TBI experience, I don’t expect them to become experienced in 3 days. It would be enough if they admitted that they are not sufficiently familiar with the subject that maybe it’s best that I go to such and such doctor, who instead specializes in that. But NO, we know there is no way in the world they will lose a patient and a very high hourly pay (here in FL the absolute minimum you can pay a psychiatrist is $250 for 50 minutes) so they’ll keep you going. And you’ll keep trying the medications that for that little that we know it was pretty clear and obvious that they may not work from the start!
Yeah, I also don’t like how TBI patients are treated. But I mean it in a medical way. We sorely need a medical renaissance, because part of the reason why we are still so fucked up after years and years may really be because the proper ‘treatment plan’ was not put in place. The same way like no two brains are alike, we can safely say that no two ‘treatment plans’ can be alike. Do doctors really see/consider that when they see us? I think not. 😦
Thanks very much Cataldo – I appreciate your kind words and support.
You make some really excellent points, and I do believe that the treatment you discuss is really the first point where the tone of overall treatment (by professional providers, family, friends, colleagues, employers) is set.
We “pedestrians” (non-professionals) tend to take our lead from the trained professionals, and they have the opportunity to set the standard. Why some upwardly mobile young doc hasn’t taken it upon themself to pick up that standard and charge forward, is anybody’s guess. It’s a field just waiting for a William Wallace or Joan of Arc (who needn’t be killed these days, to do a lot of good, I might add 😉 I haven’t the faintest idea why some leader hasn’t just stepped up, referenced all the research, and made a stand — and a name for themself. Of course, there’s Norman Doidge, M.D., but he’s touring with his book, and it seems that those docs who do have cutting-edge leadership skills are either on book tours or they’re manufacturing their own research. I just don’t get it. Why the lack of real leadership with post-TBI/concussion treatment? It’s so sorely needed, and it could make a huge difference — a REAL difference — in everyone’s lives. It could literally save this country millions, if not billions, in health care and productivity losses, if someone would just lead the way with some actually valid research and experience.
But this kind of stuff doesn’t seem to be out there, commonly available and commonly dispersed throughout the culture. Sure, there’s Larry Schutz, who is doing great work with Give Back LA, but why the lack of PCP help? Why the ignorance? What will it take — a lawsuit?
I’m venting a little… deep breath now… 😉 But it is maddening. And it affects so very many of us so deeply and so daily.
In fact, the very dearth of adequate tbi care — and the very real fear of what screwed-up practices I *knew* I would be subjected to, if I admitted I’d had a head injury when I fell in 2004 — was what kept me from getting any medical help at all.
I knew I had fallen. I knew I had hit my head. A number of times. Hard. And I sure as shootin’ knew I was *not* going “down the hill to the hick hospital” near my parents’ rural place, where medical care was notoriously awful… only to be ham-handed by some ER doctor or orderly who wasn’t going to “get” that I’d sustained a real injury, get written up with some brain-related medical condition that would go on my record, but not buy me a damn’ thing, care-wise, and then end up with the double-whammy of lousy care and a “brain damage” blotch on my chart.
For that matter, I had no hope that anyone in the metropolitan area where I lived could help me. I just didn’t trust it. I figured, I could be labelled as “crazy” and have my viability besmirched (as the two neurologists I saw later tried to do), or I could be completely dismissed. As usual. I’d been hit in the head so often, over the course of my life, and never was anyone even willing to admit that I might have been injured.
And when I did say, “Hey, I got hurt!” they just looked at me like I was nuts, asked me when the last time I took drugs was, and asked how my relationship with my parents was.
I think that the crux of the issue is the type of care that TBI requires. It’s not the sort of thing you can give a pill for, and send someone away. I’ve seen this many, many times — my own doc included. They look for a pharma solution, first off. Because that’s A) how they’re trained, and B) something they can fall back on as quantitative and measurable. It’s easier to address issues, if you can think in terms of milligrams and IUs and frequency of dosages. TBI care, however, is more nuanced, it requires a person to think, to perceive, to participate with the patient as a real human being.
But even those who DO participate with their patients as human beings, are still prone to exhaustion and exasperation. Day in and day out, seeing people with one problem after another. Most people never go to the doctor unless there’s “a problem”, and then sometimes it’s too late to really do something. How dispiriting… At the same time, one would think that the chance to work with someone who can actually get better and have a more positive outcome as a result of personal interaction, might be just a little enticing for a burned-out doc, right?
I dunno. It’s a mystery. And you’re right — it is NOT acceptable. I wish to God there were a way to change this.