Sunday, January 26, 2014

Concussion Story

This is just a summary of how I got to where I am, for those who asked after last week's post. So, I guess the blighted concussion posts continue. 

I’ve had 3 known concussions, clustered within 3 years in my mid-40’s. I say “known” because I’ve been in a number of car accidents, all wearing seat belts but also all taking jolts to the head. I’ve also been kicked a number of times in the head or chin at work in a psychiatric hospital, or thrown into a wall or onto the floor during a struggle, and have a child at home who’s a physical challenge to manage and has elbowed me in the head pretty hard. I’ve fallen on my back when I slipped on ice and bumped my head. I’ve played soccer, and softball, and tackle football with my family. I’ve felt “stunned” to
varying degrees by lots of these events, and though the skull is strong and the brain is resilient, you never know how all this adds up.

Still, something different occurred with these 3 events. The first was a slip on a wooden boat ramp in January five years ago where I was knocked unconscious briefly, or lost my memory for a few minutes. There’s no way to know. A guy was walking down the street with his black dog, and then they were next to me. I had a splitting headache and was a little unsteady but declined his help and walked home, about six blocks. Then I felt dazed, was nauseous, and decided I must have been coming down with the flu and that’s why I fell. 

The symptoms went away after a week or so but that spring I had difficulty “learning” new faces, at work, or even with my son’s staff at home. If I knew who you were before
Neuroscience for Kids
this fall, I still knew you, though I might struggle with your name. If I didn’t know you, and was introduced, I wouldn’t recognize you the next time I saw you as someone I’d met. It was scary, and I thought I might have Alzheimer’s, so I went to my doctor, who sent me to a neuropsychologist in August. 

By then is had resolved somewhat, and the testing didn’t show much—visual processing and visual memory were “relative weaknesses” for me but still in the normal range. I used to really great at linking names and faces, and knew all the staff at the hospital I worked with (about 400 people) and all of the kids. After this, I never knew “everyone” again but did well enough with the people I saw frequently. The feeling of complete bafflement was gone when someone seemed to know me and I didn’t think we’d ever met. I had a vague notion, and would bluff until it came to me. Lots of people are like this. It wasn’t much of a loss.

I didn’t link the weird facial thing to the fall until 18 months later, when I had my first immediately-diagnosed concussion after a kick to my eye at work that knocked me into the nurses’ station where I hit the back of my head. The same nausea/dazed/headache thing happened and I said to myself “oh, that’s what the boat ramp thing was.” I wandered around the unit until someone called a doctor. There was only one on campus and he was busy so I drove myself to the hospital, where they did a
from a post on sodahead.com 
quick CAT scan and said I didn't have a brain bleed but should get a ride home. 

There followed a few days of "brain rest" as recommended, and still I developed migraines, which I’d never had before and were debilitating for weeks. When they cleared, I found my speech was still affected. I couldn’t figure out what to say in response to people talking to me. It was a “cat got your tongue” existence for many more weeks, like I was thinking in slow motion, and speaking through water. 

Plus, the medication the doctor was prescribing to prevent the migraines (Topomax) can also slow thinking and speech. I stopped the med, the migraines came back, and the thinking and speech were still slow. I had trouble driving, and with balance, and was often dizzy. The nausea persisted for weeks this time, and I felt significantly “different.” Impaired. Weird. Overwhelmed. My attention span was shorter, and I couldn’t stand noise—like the television—or strong smells—like dinner—but these were common with migraines too. I had a consult with a neurologist who said there was no treatment that would help except limiting the migraine pain, so I focused on taking Maxalt early in the headache cycle rather than waiting until the headache was fierce. It seemed to help, and so after four months of recovery I went back to work, where I managed four inpatient psychiatric units and ninety or so staff. 

This was when it dawn on me that my life had changed. My brain was different.

I couldn't do my job. Not really. I could fake it. I could do pieces and parts, but pulling it all together was like reaching for a pea in on a spacewalk when you're wearing those big astronaut gloves. Even if you can within reach of the damn thing, you don't have the dexterity to pinch it. 


While cognitive issues are often not treated like medical problems--in terms of treatments they're psychological, or in their own category--when you go to a doctor, they ask about symptoms, and you rate them, and they write that down. I talked and thought about symptoms a lot, and felt proud of myself when something was getting better, like it was all up to me how fast I improved, and how much. 

But how you function in a challenging situation has nothing to do with symptoms, and instead has to do with overall brain functioning, speed, flexibility, the ability to do exactly what's needed in endlessly different combinations. 

Being “spacey” at home is nothing like being in a tense staff meeting with several staff arguing and trying to say something reasonable to get the situation under control; or a family therapy meeting with similar dynamics; or a supervision where a staff is upset and jumping around between topics and it’s hard to figure out what they’re trying to say and what you need to do; or a training for dozens of people who are starting to look at you oddly because of the pauses in your speech and your losing your train of thought, and having word-finding problems. 


Much, much scarier than the visual thing from the year before. And yet I knew what it
Dory is a goof, and a good stand-in for people with TBI's.
was, and assumed it would get better. It did. Not back to normal, but better. Most people couldn’t tell there was anything wrong. Those who knew me well could. Also, I knew my brain had become “fuzzy.” I’d been a very sharp thinker before, meaning fast, decisive, analytical, and perceptive. This “mental acuity" was gone much of the time. I was fatigued, and muddled. I sat at my desk staring blankly at my work, some days for hours. My productivity in writing reports went down. I couldn’t listen in a meeting for more than 20 minutes at a time before mentally checking out. We had conference calls that were murder because I couldn’t follow who was saying what. 


I looked for other jobs, but struggled in the interviews and didn’t get them. There were times I wasn’t sure I was making sense when I spoke. My personality was the same, but my confidence was gone. I started doing more trainings, because I believed in the initiative behind them (for trauma-informed care in psychiatric hospitals), but I wasn’t as creative at finding ways of teaching the concepts, and some of my presentations were disorganized—or boring—when they never had been before. The harder I tried to perform at work the way I had in the past, the more stressed out I became. 


Postconcussive Syndrome Awareness UK
My bosses were kind and understanding, but couldn’t easily change my job duties, and in some ways had to increase my responsibilities due to the loss of other staff. My being stressed out was something I could control, so I practiced mindfulness skills, and letting go of the super-accomplished person I was. I accepted that Superwoman had lost her cape and was firmly and permanently planted on the ground. This "letting go" helped, and I no longer worried as much about what I couldn’t do (or couldn’t do as well as before), feeling pride in other things. I was inordinately proud that I made every soccer game my kids were in, and every track meet. I read voraciously, and I wrote more, and while I couldn't organize a story well, I could still lose myself in a scene. I walked every day, swam and went to yoga several times a week. I planned vacations and loved them. My first granddaughter was born and I loved her. My kids and husband were all fine. Life went on. 

fairoaks carmichael patch
Two years and one month later, I was knocked to the floor again at work and hit the top of my head. The reasons why probably had to do with impaired judgment, though of course I didn’t understand this at the time. I drove myself home (see: impaired judgment) and locked away in a dark room for two days. On the third day, I got up, went to work, and found that I couldn't really talk. Scattered words, but not sentences, which is called aphasia. This "softened" into dyspraxia, which is stilted language, within a few weeks. Headaches, insomnia, nausea, dizziness, disorganization, memory problems, slowed thinking, oversensitivity to sound, light and smell--these were all worst in the first few weeks after the injury but only the nausea and dizziness fully went away. The sensitivity to sound is unbelievable. I can't watch TV, or movies, because the sound hurts and I can't usually follow what they're saying anyway. I live fully in the land of the fuzzy brain, where nothing is as sharp or clear as it was before and mental abilities that used to come unbidden can't even be dragged into view. 

I've had a neuropsych eval, an auditory processing eval, a cognitive eval, two neurological evals, a speech and language eval, and a psychiatric eval. The ones who hypothesize a reason for my inability to recover from this one say corpus callosum shearing but it's interesting--if that's true, there's also a rebuilding of abilities. Even after a year I still have little leaps of progress. Stimulants help clear the fog. Quiet can help me be productive. Not enough to go back to work, though. Not enough to function without a lot of help. 

Love, Lisa. 

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