Just updated – Communication Solutions for TBI

I just updated my section on Communication Issues – Trouble Being Understood in my Brain Injury Recovery Tools section.

If you’ve got anything to add that you feel is important or that you have found works for you, by all means, chime in!

Ignoring the symptoms to stay on the field

I’ve been watching the video of Malcolm Gladwell that I found on The Concussion Blog a few days ago. I had some time to watch the second half (I started the first half a few days back), and it is good — well worth the hour it takes to watch.

As a point of entertainment — and also a telling view into the landscape at U of Penn, which continues its football program, even after the inexplicable suicide of one of their football players who had no history of depression, but did have CTE, as evidenced in a biopsy of his brain after death — at 43:00 watch the academic try to figure out what to do at the end of Gladwell’s talk. At first he walks up to the podium and sort of stands there. Then at 43:12, he looks around and realizes he’d better start clapping with his peers (who are standing up to clap), while also stepping away from Gladwell, and not making eye contact. My vivid imagination tells me he’s clearly worried about the flak he’s going to take with his administration for having invited this upstart (from NYU, no less) who is publicly taking the university to task for their negligence in addressing football-related injuries, including CTE.  Who knows, maybe he’s seeing his whole career flash before his eyes…? He looks around a little bit, as though seeking some sort of direction from someone in the audience, then stops clapping and steps up to take control of the podium.

Good theater…

But also a telling look into the sorts of behaviors that perpetuate the prevalence of football in this country. Granted, I grew up loving football and playing it when I could (though I was more interested in track and cross country than football as a team sport). And up until I realized that my significant life/money/relationship issues I was dealing with were related to the concussion I sustained 8 years ago, I loved watching players run into each other and rough each other up on a regular basis.

I just loved it.

Just like I loved playing it when I was a kid, and I played rough when I did. For the record, I also played rough in lacrosse and soccer, when I participated in them, and I had no qualms about making physical contact, even in sports where that wasn’t supposed to happen. I admit it. I was a bruiser. And it turns out, I bruised myself, too.

A lot.

What strikes me about the Gladwell talk is how he describes Owen Thomas, the Penn player who hung himself after “a sudden and uncharacteristic emotional collapse (at 39:16)” was never diagnosed with a concussion, and was “the kind of player who might have ignored the symptoms to stay on the field” (at 39:40 of the video). Who knows – maybe it cost him his life, to ignore the symptoms he should have paid attention to. Maybe it contributed to his CTE. The evidence isn’t as clear as people demand, but it’s still a pretty compelling correlation. Somebody who obviously sustained a ton of hits (sub-concussive or more serious — to the tune of about 1,000 each season), kept quiet about any pain or discomfort he might have experienced… and he never lived long enough to tell the truth about what more he may have been experiencing. That knowledge went to the grave with him.

But still there’s the CTE.

This statement, quoted from the New York Times, haunts me. Because on so many levels, that same kind of behavior is well evident in me. I don’t like to complain. I don’t like to draw attention to my aches and pains and difficulties. I don’t like to make much of my discomforts, which are myriad and seem to never end. That’s just how my life is. That’s just how things are. It’s all background noise to the rest of my life, and while I do try at times to mitigate the issues and head them off at the pass, after a certain point, I just quit trying to fix them and try to focus on other things which are more productive (and more interesting) to me.

I’m not the kind of person who loves to dwell on their misfortune. I’d rather do something about it. And if I can’t do something to stop it, then I just accept it, do my best to ignore it, and move on.

But what if that’s part of the problem? I know that when I fell in 2004 and smashed my head on those stairs – bam! bam! bam! bam! – the last thing I wanted to do, was draw attention to my injury. I knew, deep down inside, that I was hurt. But I also didn’t know how to describe it, I didn’t know how to communicate it to others, I didn’t know how to put what I was feeling and sensing into words, and I didn’t know if I should even be worried.

I just sat down for a little bit to recover, gathered my wits about me, then picked myself up and got on with my work. Like I’ve done countless other times while playing sports, after car accidents, after multiple falls (one off the back of a truck I was packing — I stepped back and misjudged the height and fell back (I didn’t hit my head, but I was definitely jarred and out of it for a little bit), after clunking my head on something or other. Just sit down for a little bit, wait till I can see/hear/thinking again, and then get up and get moving again — often at a more brisk pace than I’d been working at before.

The mechanics of this fascinate me. No way have I sustained as many impacts as long-term football players, but I have had my share of rough-ups, and each time I was knocked for a loop, I stopped, composed myself, then went on without mentioning the incidents or how I was feeling afterwards to anyone.

To anyone. Not my parents, not my coaches, not my teammates, not my spouse, not my coworkers. Nobody.

Because who would understand? Who would get it? They’d all thing I was wrong in the head and get worried, and then I’d have to navigate their worry and concern, which was even more disorienting and frustrating and confusing than the injury itself. And there was a very good chance they’d take me out of the “game”, be it life or a sports contest, when all I wanted was to be in the midst of it, playing my part.

I figured I was better off just dealing with it myself.

So, I kept it quiet. Until I couldn’t anymore.

Of course, it catches up with you. It always does. You think you can just keep pushing, keep going, keep moving, and nothing bad will happen. You think something bad will happen if you don’t keep up your pace. And to some extent, it’s true. You can get benched. You can get marginalized. You can get sidelined in a thousand different ways, perceived as “unreliable” by those who depend on you for Important Things. And then you’re not worth quite as much to the team as you were before. And you become expendable. And you can get cut. Fired. Disposed of. Because you’re damaged goods who just can’t keep up.

Retard. (sorry for the “r” word, it’s for illustrative purposes — it’s what people may say/think about you)

And today, I find myself in similar straits. I am exhausted from my business trip, and I haven’t gotten my strength back. I haven’t been sleeping, and work has been chaotic and stressful with so much going on. It’s good to be back in my own bed again and back to my regular routine, but I am wiped. Beat. And I still need to keep going. I have to catch up with a lot of things that have been waiting for me. I have to do my chores, take care of business, keep the joint running — and then some, as I make up for lost time.

I don’t feel like I can afford to take time off, to recover, to relax. There is simply too much to do. And so I put my head down, push forward, keep myself going with adrenaline and resolve and steely willpower…  and I am rewarded. I am rewarded by those who depend on me, who look at me and think, “Wow – they are unstoppable.” I am respected by those who look up to this sort of self-sacrifice, who admire this sort of lack of self-regard. And I get to keep my coveted position as a team member of a group that relies on me putting everything ahead of myself — and who know nothing of my daily sensory, neurological, and metabolic issues.

Yeah, I keep going. While I can. And then I crash. When I can. I try to get some extra sleep. I try to take time out. I try to catch up with myself as best I know how… but there’s always that element of self-disregard that comes into play, that willingness — eagerness — to ignore the less than attractive aspects of my life, so I can keep up my resolve and productivity.

In the face of this, the best I can do is be honest with myself and recognize when I’m upping my risk of injury. I can pause for a moment and check in about my state of mind and body, and see if I’m tense and uptight… then take a slow, measured breath and just relax and let the tension go.

This is something I’m working on each day, to improve — just being clued in to my state of mind and body, so I don’t get too intensely stressed and start acting out and losing impulse control (like I did yesterday in conversation with my team and a former co-worker, when I said some things about my current employer in the heat of emotion that I never should have said out loud). It’s the kind of awareness I need to strengthen and hone, because the alternative is not that attractive. And the nice thing, too, is that this practice of just checking in, now and then, to see “where I’m at” really does help me relax and feel more together, which is a great feeling to have when I’m in the midst of a sh*tstorm.

So, while I realize that I push the envelope and I tend to overextend myself, each and every day, I also have some tools I can use to mitigate the effects of that constant stress — I have an understanding of how my central nervous system works, that really helps me develop good strategies for coping. I have things I can practice in the course of the day to check in with myself and see if I’m starting to fray. I have an understanding of what constantly high levels of stress can — and will — do to your body and your brain. And I have the internet to read and study and develop my knowledge further, so I can keep myself on track with more strategies and tools based on recent research.

I need to stay in the game. I have to stay in the game. I can’t just sit out and not participate. I have too much riding on me, and I have too much to lose. So, I have to keep myself going… =I know it’s not good to ignore symptoms and stay on the field despite serious injury, but I also can’t let my injury stop me from living my life. So, I do my best to not ignore what’s going on with me — and with the knowledge I have, manage my issues and not let them stop me. It’s an ongoing process, learning to pace myself, and I’m discovering and developing new ways to do that so that can keep moving and keep engaged, not bail from the situation.

Stepping away for a moment to do something different, then coming back fresh.

Pausing a moment to see how I’m breathing, and take a relaxing breath if I need it.

Stopping the momentum for just a moment, so I can catch up with things and not lose myself in that momentum.

Really focusing on developing resilience and hardiness, and accepting challenges as a part of my everyday that are evidence of my strength, not my weakness.

These are all things I can do. These are all things I try to do on a daily basis.

Because I don’t just want to live. I want to live well.

So far, so good.

TBI Recovery – Please speak my language

There are lots of ways to say things

I had an interesting appointment with my neuropsych on Friday. I had been feeling really bad all week, and we talked about it. I was trying to figure out the physiological/neurological causes of why I had such a bad reaction to what was going on — because I believe that our “wiring” sets the stage for our actions and reactions, and I was hoping to gain more insight from someone who has specialized in studying people’s wiring.

However, I was to be disappointed. My NP seems to take the approach that psychology can explain everything — and having the right psychological approach and practice, is the way to fix everything. Well, everything that was bothering me, anyway.

It’s fine that they think this way. I agree to some extent. Additionally, I have the perspective that our bodies and our neurology really set the stage for our state of mind, and our “neuroceptive” state can practically hijack our thinking, even before we’re aware of it.

My NP does not agree. They have their perspective, and they are very invested in that perspective. I’ve suggested a number of times that there might be something else underlying my intense reactions. But they keep telling me that I’m doing a head trip on myself and I’m buying into flawed information about myself (which I developed when I was very young) and that the way out of it is to identify those flawed messages and then replace them with something else.

Yah, okay. Whatever. I don’t want to be disrespectful (because I do see their point to some extent), but I really need something more advanced and evolved than that narrow approach. Everything important doesn’t happen from the neck up – a whole lot of information and intelligence is processed in the heart, as well as in the gut. The science tells us that, loud and clear, and I’m not sure why they’re not on board with this.

So, I’m going to have to find that sort of orientation somewhere else. Like in the Polyvagal Theory, which is much more in synch with what I feel and believe. And the other scientists who are working on heart-based intelligence and gut-based intelligence.There are more and more of these folks around, nowadays, and finding their writings is getting easier and easier.

It’s disappointing, that I’m working with someone who is so invested in their own way of thinking about things, that they won’t consider anything else. And it’s frustrating for me to hear them use all their lingo and psycho-speak to describe my situation. Because it’s only part of the story. Their part. Not my part, too.

Well, people are limited, and it’s unrealistic for me to expect them to have it all together in every single respect. They have helped me a lot — and in fact some of the times they’ve helped me the most, were when they were the farthest off track, and I had to come up with my own solutions.

What bothers me, is that I know I’m not the only one who struggles with this. And it bothers me that my own NP is missing out on a whole other dimension of TBI recovery that could help them as well. They have health issues, too, which I am convinced could be helped with a broader view of what constitutes “intelligence” in our bodies, not just our minds.

But they’re so locked into their own concepts and their own language, that they’re closed off to that possibility. And so I spend yet more time hoping that they’ll be able to offer me the kind of input they’re probably never going to offer.

My bad. Gotta fix that.

The thing I have to remember in my clinical/therapeutic working relationship with this individual is that they have their own language which has been shaped by their upbringing in an urban professional household. Their parents were psychologists/psychiatrists, so there’s no great surprise that they think the skull-based brain is the answer to everything. One of the issues around their upbringing (my own was half urban, half rural, and both sides of my family come from a long line of farmers) is that it taught them to talk and think along certain terms — I read some interesting research, a while back, about how rural societies prize introverted, homogenized, self-effacing ways of relating and behaving, while urban societies prize extroverted uniqueness that draws attention to itself. And I can definitely see the difference between my own way of relating and my NP’s way of relating – they probably have no idea how deeply I disagree with their point of view in some respects, because I have not been that forthcoming about my own unique perspective. I never really learned how to have those kinds of conversations, and frankly I don’t care to learn, because they don’t appeal to me that much. I’m definitely more rural-leaning in that respect.

On the other hand, my NP seems pretty oblivious to my differences of opinion, probably in part because I don’t shout it out loud… and they seem to believe that their way of thinking about things is, well, the right way to think about things. They seem to have an awful lot of skin in that philosophical game, when it comes to these topics we’ve been talking about — what makes people do what they do, what makes us tick, what makes us well and what makes us sick  – how’s that for today’s poem? 😉 I can understand their point of view, but they don’t seem to understand mine. Or maybe because they’re the highly educated expert and I’m the TBI survivor, they consider my point of view fundamentally flawed and awaiting their remedy.

Whatever the root cause, whatever the reason, I think that my recovery has sometimes not been helped by their one-sided belief system. I need people to be able to entertain different possibilities, and explore alternative options and explanations. I need them to suspend judgment and disbelief, every now and then, not stay locked into a conceptual framework that is their comfort zone. I also need them to be willing to stretch a little bit — as I often do — to find a new and different way of approaching intractable problems that resist being solved. My life often feels like a friggin’ intractable problem that resists all attempts at solution; to approach it well, I need to get creative. And that can’t happen if only one person in the room is willing to color outside the conceptual lines.

Don’t get me wrong — I have experienced a pretty amazing transformation in the past several years, thanks in large part to my NP. But now that I’m past the most rudimentary understanding rebuilding of basic skills, I need to keep growing and learning, so my recovery can continue. That’s going to require more creative thinking, more inventive solutions. Conceptual brittleness is a problem — and I need to figure out how to work around it with my NP.

It’s a problem. What’s more, I also think that my difficulties with dealing with my NP’s biases, is not mine alone. I think there are a lot of people just like me, who don’t necessarily get the kind of care and consideration they should be getting, at both basic and complex levels — because of cultural and communication differences that experts and clinicians are not picking up. I think that one of the biggest barriers to TBI prevention and safety is lack of education. And lack of education happens because people aren’t speaking the same language. Doctors speak urban. TBI survivors speak rural. And doctors expect us to adapt to them, without them reaching out to us.

Now, I’ve been fortunate to have been raised in a family that was very focused on education. My parents both attended college, as did my aunts and uncles, cousins and siblings. It’s just what people did. Yeah, we’re all a bunch of farmers, but we’re edji-cated hayseeds, we are! 😉 As a result, I have this rural orientation overlaid with an education-oriented vocabulary, and an eagerness to learn that has stood me in good stead. I’m comfortable reading long scientific terms, even if I have no idea on God’s good earth what they mean, the first time I read them.

But what about all the other folks out there who haven’t had the same advantages as my own background? What about all the TBI survivors who aren’t comfortable with the big words, who haven’t been educated about what TBI and concussion are all about, and who struggle with dealing with doctors who have a strongly urban point of view and conversational style? What about them?

Lost in the shuffle, that’s what. Left to their own devices, to figure things out.

It’s bad enough, when I’m going through this… and I have a lot of advantages on my side. But others? Oh, it’s tough out there. Very tough.

Still and all, it wouldn’t hurt if my NP would realize the extent to which they are biased about what makes TBI recovery possible. I can keep working with them, understanding their point of view and their apparent biases. And I can keep coming up with my own conclusions in the face of their one-sided approach. I’ve been doing that, and I can keep doing it.

But every once in a while, it might be nice, if they actually spoke my our language.

What I was meaning to say, is…

Uh, oh...

I’ve found a new area I can use some help. Actually, I’ve had this issue for a while, I just have been so busy taking care of other things, that I haven’t paid a lot of attention to this. It’s being able to make myself understood under pressure. This matters more and more, as I get into situations that are more challenging than the everyday. Speaking at work with people and in meetings, speaking to groups of people. Speaking with people whom I really need to communicate with. I tend to get tongue-tied and stumble around a lot. Which doesn’t reflect well on me in a work situation — or make me look like I know what I’m talking about in general.

This was not that big of a problem with me before, because I didn’t really talk much before. I just kept quiet. I kept to myself. I didn’t volunteer information and I didn’t go out of my way to discuss things with people.

Now, however, I’m talking more with people, and I’m finding myself stumbling over myself at just the worst times. Sitting in a meeting with higher-ups. Talking with people who need me to handle something and handle it well. Interacting with people under tense circumstances — just the times when I need to be at my best, I can be at my worst.

It really sucks. But getting all bent out of shape about it is not going to change anything. If anything, it makes it worse.

This is something I really need to handle. I can’t keep on this way, I need to learn how to deal with this. I can think of a few things I can do:

1. Plan what I say before I say it. – If I’m in a meeting, I can think through what I’m going to say before I say it. I can keep a pad of paper with me and jot down some ideas to organize my thoughts before I spek.
2. Say less, not more. – I tend to try to pack everything into one rushed statement. This, I believe, is because I’ve not really developed my skill at back-and-forth conversations. So, I try to say everything at once. I don’t need to do that, actually. In fact, saying less tends to be better than saying more.
3. Limit what I say and let that be enough. – This relates to saying less, but it’s a little different. Limiting what I say has to do with sticking to a single topic, not having to exhaustively cover every detail of a subject and letting it go, even if I haven’t expressed and discussed and covered every single topic I’ve thought of.
4. Don’t fret about what other people think about me. – This is the hardest one. But it’s very important. If I start to fret about what other people may or may not think about me, it sets me up for more stress and more problems. More tongue-tied struggles. But if I can relax, it doesn’t need to get the best of me. When I fret, all of the above become much worse. Besides, what I think others think of me may not even be true.

It’s all a process, of course. And all of us have places where we can improve. It keeps us engaged. It keeps us honest. It also keeps us on our toes. Communication is key for so many things, so the better I am at this business of making myself understood, and not giving up to the anxiety and self-consciousness, the better.

84 ways TBI can make your life really interesting

Some time back, I compiled a list of possible issues TBI can introduce into your life. I combed through a bunch of sources and then put them all together, took out the duplicates, and came up with a list of common complaints related to traumatic brain injury. I’ve refined the list over the past couple of years, and I’m sure there are more issues I’ve missed, but this is what I’ve  been working with, thus far.  These apply to mild, moderate, and severe. And a lot of them are problems I have dealt with on a regular basis throughout the course of my life.

Here’s the list, broken down by category:

Behavioral
1. Impulsiveness
2. Aggression (verbal/physical)
3. Raging behavior

Communication
4. Trouble being understood
5. Trouble understanding
6. Trouble finding words
7. Trouble communicating in general

Emotions/Moods
8. Agitated, can’t settle down
9. Angerrrrrr!!!
10. Anxiety – Feeling vague fear, worry, anticipation of doom
11. Depression, feeling down
12. Excitability!
13. Everything feels like an effort
14. Feeling unsure of yourself
15. Feelings of dread
16. Feeling like you’re observing yourself from afar
17. Feelings of well-being
18. Feeling guilty
19. Feeling hostile towards others
20. Impatience
21. Irritability
22. No desire to talk or  move
23. Feeling lonely
24. Nervousness
25. Feelings of panic
26. Rapid mood swings
27. Restlessness
28. Tearfulness, crying spells
29. Feeling tense
30. Feeling vague longing/yearning

Day-to-Day Activities
31. Being overly busy (more than usual)
32. Feeling like you can’t get moving, you’re stuck
33. Feeling like you can’t get anything done

Mental
34. Altered consciousness
35. Aura or weird reverie, trance
36. Trouble concentrating
37. Trouble making decisions easily
38. Trouble reading
39. Analytical skills suffer
40. Trouble telling what’s real or not
41. Being easily distracted
42. Being forgetful, can’t remember
43. Nightmares
44. Worrisome thoughts

Physical – Eating
45. Food cravings
46. Eating less / more than usual
47. Heartburn / indigestion / upset stomach
48. Losing weight

Physical – Head
49. Headache(s)
50. Stabbing pain(s) in your head

Physical – Hearing
51. Hearing music others don’t
52. Ears ringing (tinnitus)

Physical – Pain
53. Backache or back pain
54. General body aches
55. Joint painf or stiffness
56. Neck pain
57. Touch feels like pain

Physical – Sleep
58. Waking up too early
59. Being fatigued / tired
60. Difficulty falling asleep
61. Waking up during the night
62. Sleeping too much

Physical – Vision
63. Trouble seeing at night
64. Being sensitive to light
65. Double/blurred vision
66. Spots, floaters,  or blind spots

Physical – Sensations
67. Your skin feels like it’s crawling
68. Feeling like you’ve gained weight
69. Sensitivity to cold
70. Sensitivity to noise, sounds
71. Smelling odors / fragrances that others don’t smell

Physical – General
72. Feeling dizzy / have vertigo
73. Your heart races or pounds
74. Hot flashes or sudden feelings of warmth
75. Losing consciousness / fainting
76. Metallic taste in your mouth
77. Muscles spasms or twitching
78. Muscle weakness
79. Seizures
80. Nausea
81. Sexual desire feeling “off”
82. Skin breaking out / acne
83. Hands or feet swelling
84. Vomiting

Now, some of them might look like they are duplicates — #3. Raging behavior should be grouped with #9. Angerrrrrr!!!, right? I’ve actually split them up because one is behavioral, and one is emotional/mood related. Just because you’re angry, doesn’t mean you’re going to have raging behavior, but anger can still be a significant problem.

One thing that struck me, as I was compiling this list over the past few years, is how many of the symptoms are physical. It almost doesn’t make sense. You injure your head, you hurt your brain, and your body starts acting up? Where’s the sense in that? Well, considering that the brain is like the command center of your body, I guess it does make sense.

The other thing that has jumped out at me, as I’ve considered this list over the years, is how the non-physical issues can often arise from the physical. Being dizzy all the time can really mess with your head, and it can make you cranky and mean and short-tempered. Likewise, having constant ringing in your ears can shorten your fuse and make you much more temperamental. And chronic pain has a way of depressing the heck out of you.

Now, not everyone with a TBI will have these issues, but lots of people will have one or more of these problems, and lots of them can come and go over time. It’s just one more handful of pieces to the puzzle that is TBI. A big handful, actually.