Sunday, July 1, 2012

Sunshine Gives Me Headaches

I get asked how I am a lot.  It's nice, and it's difficult.  There are few one-sentence responses when your life is largely on hold as you recover from a head injury.  So, for those for whom I've given totally unsatisfying answers, here's my better attempt.

The acute physical symptoms of my third concussion (introduced in a May blog titled Head Hurricanes) continue to improve.  That is the nausea, dizziness, disorientation, lack of balance  and the acute anxiety and reactivity of not understanding everything going on around me are all lessening.  For this I am deeply grateful, though I always knew they would go eventually so I'm also not surprised.

image here
The chronic physical symptoms though, the ones that started with the first or second head hit--oh, they're a bear--much worse than before, and receding so imperceptibly (I'll take the optimistic route here) as to be pretty much the same every time I am asked.  These are the insomnia, the headaches, the fatigue, the irritability (or emotional flatness) and the sensory overload.  Sometimes they make each other worse, like a loud room full of people making me cranky or tired even if I'm not talking, or bright sunshine giving me headaches.  I really don't know what to say when asked about them, even by the doctor.  "Same" I guess fits but it's not very satisfying to hear, I know.  I'm trying some new meds but if I mention this it sets up the expectation that  now they will get better, and I'm not sure they will.  They've been with me for two years now; my best hope is they will get back close to where they were before May.

And these pale in comparison to the chronic, at least semi-permanent cognitive impairments.

We don't have casual language for cognitive problems that's not derogatory.  We have "slow" and "dumb" and "stupid" and "idiotic," "foolish," "whack" and "clueless."  For obvious reasons I'd rather not go with those, if for no other reason that they're very non-specific.  If you and I spoke you wouldn't think I was any of those things, necessarily, at least not on a good day, my fifteen-year-old daughter aside.

So I'll have to revert to psychology-speak, and for that I apologize--I'll try to liven it up where I can.

I had a pretty strong cognitive profile across the board going into all this.  I had some back injuries and chronic pain can wear away some of your focus but when I was pain-free I was good to go mentally.  Since my first concussion, and especially my second, my general cognitive state has ranged from clear to foggy, mostly settling in the middle.  Since May I've been on the foggy end, with some days feeling like my head if full of wool.  It affects my attention, my ability to process what's being said and done, organize a response and get it out there in the few seconds we're typically given to do so in life (less if we're driving).  If the situation or topic is expected (i.e. we're at my daughter's softball game and someone makes a game-related comment), I'm pretty normal in my responses because even if I'm slow for me, I'm still average.

If it's complex, unexpected, or requires creative thinking or novel problem-solving, though, you'll be waiting a long time.  More likely, you'll get the Blank Look.  Long, uncomfortable, stuttering moments later you'll get something approximating a response, and it won't be an especially profound one.  For that, you'll have to wait until I'm sitting in my quiet, dark room, thinking at my own pace about what you said, and able to sort through all the levels of complexity separately.  Then, if I can respond in writing with no time limits, you'll get something like The OM (Old Me).

In this state I've sorted it through further, largely for myself but also for those who care for me, and those who might be struggling through the same thing.  Here's what I think I've lost (on a good day) from my hypothesized intelligence (it was never assessed before the concussion so I'm just guessing here):

10 points:  verbal skills (comprehension, reasoning, expression)--it's still my strength but words often fail me.   I speak much less than half as much as I did before my first concussion, which not everyone minds.  I have word finding problems, difficulty putting emotions and thoughts into words, and often get stuck on the first thing a person has said, missing the rest.  So I smile and ask them to repeat, or fill in the blanks myself, sometimes incorrectly.  I am constantly debating with family members about what I or they said.  Since I can't fix the root problem, I'm just trying to argue less about it, in no small part because I am no longer daunting in terms of verbal sparring;  there are many chinks in my memory and logic armor and they're taking full advantage, as they should.  I was a fierce defender of my being right all these years;  payback's a bitch.

20 points:  visual and perceptual skills (including those needed for driving, watching body language and nonverbal communication, ball games, TV and the more complex coordination needed for biking or cooking).  I'm okay, but often not on my game.  I have never in my life not been able to ascertain what someone was trying to tell me with their face;  now I can't about half the time.  My driving is sketchy, though again I think probably average.  I read books during ball games, even ones I'm at, though this is complicated by my shortened attention span (below) and sensory overload (above).  I can't watch TV, ever, unless it's sports and I am very aware of what is supposed to be happening;  when something confusing happens I use my remote to watch it repeatedly until I understand it.  Commercials are so aversive to me that I have a visceral jump to them, leaping for the remote to hit mute (for the TV) or changing the radio station, every time.  I'm not sure why this is, but I think the jolt of the changes are too much for me to process on the several-second delay I have in my brain now, so they are extra-annoying.

30 points:  executive functioning skills (focus and concentration, problem-solving, ingenuity and creativity, cognitive flexibility, finding patterns and organization) and working memory (keeping things in mind so I can do something with the information, like writing onto a list what someone just told me we were out of, or taking notes in a meeting).  I forgot two out of two medical appointments this week despite many systems of reminders (remembering both exactly 24 hours later).  I went grocery shopping this week for the first time by myself and got through it, but couldn't find seven items that I thought Costco sold but couldn't seem to find even with employee help.  I can only deal with my kids' requests like lunch money or rides to practice rides with advance notice (so I can think it through) but no more than one day (or I'll forget). And this is the easy stuff.  I can see these areas are where I'm beginning to truly suck and this is largely why I'm not at work.  I would say that three-quarters of my job as a manager for psychiatric units involved all of these skills, weaving in and out of each other.  After the second concussion I noticed that the most I could do when faced with a problem was remember the last time I'd had that problem and what I did then, and I couldn't even do that all the time.  The OM wasn't happy unless I had tinkered a new response that fit the situation better, or come up with an entirely new way to view and approach it.  This is what made me really good as a therapist, as an evaluator, and a hospital administrator.  I'm not as good now, and I might not be good-enough, even when I finish my long recovery from this injury.  This is the be-all-end-all problem for me to figure out, but of course its solution may evade me for exactly these reasons.  Even before May I had to take breaks several times a day to rest my brain, limit supervisions to thirty minutes because I could only focus for twenty, and edit reports for students rather than write them.myself.  I'm quite a few levels below this now, and not sure I'm going to climb back to what was already marginally subpar work performance.  But I still know identifying a problem is worlds easier than solving it, even if it is the first step.  This is the area I am most averse to discussing, fyi.  It's too damn hard, at least right now.  

40 points:  mental processing speed.  A much less sensitive an area for me to discuss, even though it's more impaired.  I think slowly, like I'm slightly drunk (which means yes, add more than one drink I'm completely stupid, and I'll accept that derogatory word here because heavier drinking while recovering from a head injury deserves it).  I'm working on the Blank Look becoming a bemused look, just as a stalling strategy, or even a knowing response (sparing me from actually having to come up with a real one).  It amuses as well as frustrates me that when I spoke with my son Billy's camp counselors last Sunday and they asked me what they needed to know in order to care for him I couldn't generate any response beyond "keep him busy" until the ride home alone, when I thought of a dozen nice tips and essentials, which I tried to impart the next day when they called on an unrelated matter, but couldn't because I hadn't expected the call and the novelty threw me, a situation repeated the next day until I gave up.  They probably know him fine by now.  I am incapable of witty repartee, and talk less in part because I'm a few seconds behind on the conversation and trying to limit my embarrassment.   When I'm writing I have to stop, over and over again, to find and continue my train of thought or structure.  It's exhausting, and I would sleep twelve hours, if I didn't wake up after two or three, which doesn't help the processing speed (tired sigh here).

So that's it.  Give me a week to take notes and a few hours to write and edit and I can respond to "How are you?"  I know that some of these problems can come from other sources--chemo brain, depression, meds, dementia or just regular-old age-related decline--but for me, because I had the three concussion in three years and the subsequent problems are so clearly linked to them, and dementia has for the moment been ruled out, I'm sure these are the sequelae.  What I don't know, because we never do, is what's next.


  1. I had no idea you were going through all this ... well, of course I didn't. But this is a generally profound message giving it all to us in black and white. I hope you continue to get better, Lisa.