Elaine's TBI story

Injury

On Christmas Day 2008 I was riding in a car headed to San Diego on I-5. The wind was extremely strong and we drove through the worse dust storm I had ever seen. Visibility was nil at times. Then, we hit a stopped car on the freeway. My head hit the back of the seat in front of me. It happened all at once, like a flash of light.

Think of those videos of crash test dummies. If you had stood in the shoulder at the right moment, it probably looked just like that.

The videos don't seem ominous, do they? Instead, they're hopeful. The silent, patient mannequins just bounce around, over and over. They can't be hurt. After the impact, we learn something and they do it again.

As real and fragile beings, when things go wrong there is no place to go. We have to move through and adapt. That is a big difference. Over the next three years, it will manifest itself over and over in the form of many losses. I will gradually learn that traumatic brain injury (TBI) has no template. It affects each person in a unique way, and it is not benign.

Aftermath

The bruises and black eyes heal over the Christmas shutdown. I slept a lot, sometimes 12 or 16 hours. In January, I was ready to get back into the swing of things. It takes me a while to figure out what is going on.

Monday morning. Time to pack for my bike commute. In the laundry room, staring at the pannier. What just went in there? What was the next thing on my mental list? Gone. I zigged and zagged, scrounging for whatever came to mind. Lunch. Jewelry. Work clothes. Keys. Jacket. When I ran out of energy and patience, I just left no matter what was missing. It was the first sign of something wrong.

For 4 months I drove a car to work because it was simpler. At work I was disoriented and sleepy. I turned to the La Spaziale machine for help. One double espresso in the morning, with more coffee or Diet Coke later in the day. Any day without caffeine became a sleepy and slow day. An unproductive day. Just like that, the status of caffeine in my life flipped from "avoid" to "life-giving substance".

Two weeks later, I called the Palo Alto Medical Foundation and asked them to connect me to whoever deals with head injuries. Over the next 2 years I told no one what was going on, except the neurologist. My goal was to never tell this story. Telling it is necessary, but another loss.

Moving forward, but not moving on

At work I began hiding faults that I could, like forgotten passwords, and laughing off the rest, like walking into a wall. Work gave me structure, activity, social contact. It was my secret cognitive rehab. Every day began in front of the La Spaziale.

At home, it was like the movie Groundhog Day.
  • Gas burners and the toaster oven left on
  • Front door to the house left open
  • Keys, sunglasses, coat, etc. lost as soon as they are out of sight. Trying to find them again is scary, with literally no idea where to start.
  • Bills are a mystery. Mail sits unopened. Expiration dates pass.
  • Recipes and cooking are too complicated. (Frozen food is not.)
I lose my keys, passport, iPod, library card. 3 pairs of sunglasses. I routinely leave my purse  in restaurants. Anything I put down is immediately "lost". I have perpetual jet lag, sensitivity to light. When I phone the neurologist, his words burn: "The time for physical healing is over. The time for emotional healing has begun."

He also tells me not to tell anyone at work that I have a brain injury. On that point he is 100% right. I am pretty sure no one will believe me anyway.

But regarding treatment, there is a big silence. What I hear in the background is "the brain will rewire itself". Well, yeah, I can see that starting to happen. 6 months later, my left hand took over routine tasks like opening bottles, drawers, doors, from my right hand. But maybe that is just coping...?

In general, what I'm going through is not what I would label "rewiring". For example, I do not want to ride or write or interact with people or encounter new problems to solve. I want to retreat, hide, be invisible. I crave formula and routines. Repeating familiar patterns is very comforting. But not terribly  realistic as a coping strategy.

When I do go on a ride, there is always a point where I get scared because I'm so far from home. Or I just want to go home because it's easier there. To a randonneur (long-distance) cyclist these reactions are completely foreign.

More disturbing are the gaps. There are times on familiar roads where I don't recognize where I am. With cycling you can just keep going. A few more data points down the road and the pieces fall into place.

At least once during a long ride, I will catch myself staring at the pavement. The pattern of pebbles in the asphalt, and the way they blur with motion is fascinating. This is new. This is not the best direction for a cyclist to look - down.

Having canceled a plane ticket to ride in the car, it was luck that I was there at all. I had a seat belt but no air bag, which was also luck. Now it was going to take more than good luck to climb out of this hole. I didn't know how but I was going to fight.

A catalog of losses

I can work, I can ride. What was actually lost?
  • Sequencing. My ability to string together tasks is gone. Cooking, for example, takes a lot of concentration. Sometimes ingredients get left out.
  • Multitasking. If I've done the tasks before, I can do them fast enough to approximate multitasking. New tasks, forget it. Interruptions? Start over.
  • Short-term memory. I had 6 passwords, all changing on different schedules. Some day I'm going to write a screenplay about this.
  • Administrative ability. Filing or approving timecards, paying bills, no go. Reminders are no help.
  • Realistic view of what I can do. The other day I went to a new office complex, then circled over and over to find the specific office. I had not brought a map, the address, or a phone number. Classic.
  • Politeness. I'm even more blunt than before!
  • Motivation. My new default is to do nothing.
What do I still have?
  • Stubbornness and fight (in spades)
  • Compassion and empathy
  • Problem-solving ability
  • Strategic ability
  • Commitment to recover