Last night I wasn't doing well. My brain was overloaded and I was hiding out in my "hobbit hole." But nature calls and I worked my way to the bathroom, all of one room over. On my way out gravity was winning handily despite my leaning on the walls, so to get through the doorway I grabbed the vertical trim on the door.
Apparently I've done this before and it had become loose. It pulled out from the door, turned sideways, and broke, sending me sprawling into the hallway. It took about 45 minutes for me to make it the 15 feet into bed -- and that was with some assistance. As a result, today is a very "hard" day, a measure of brain fatigue.
Brain fatigue looks different for every person. Here is what it is like for me. My body stops producing head. Wrap me in all the blankets you want, unless one of them is electric, I will not warm up. Any noise from anywhere and I can't think. I have my ear plugs in now, just to block the sound of the fan on the computer and the heater blower when the dragon in the crawlspace does it's job. When the diesel trucks of the construction workers staying a the town motel a football field away start their rumbling, as they already have, I can't think at all without the ear plugs.
On days like this, in the quieter hours of the morning, I try and write and get a few things done. Beyond that, it will be a day of simply occupying my brain with the cognitive therapy of trying to follow TV shows and movies, and the occasional emails of the brain injury support groups I moderate.
By definition, very few people see this side of brain injury. Most folks only see me when I'm doing well enough to be out and about. They see the 10 minute miles I can run but not the 10 minutes it takes to make the bathroom, 20 feet, one way. Sardonic grin.
No wonder brain injury is misunderstood. The injury is invisible, hidden behind a few layers of my rock-thick skull. The primary effect as the brain becomes more fatigued is that, from my perspective, the world simply gets harder. From other's perspectives, if they don't understand what is going on and why, it looks like I've suddenly stopped wanting to do _______. They have no idea that the sudden flashing glare off the car windshield did my brain in for the day. THings like that don't even register as having happened for most people -- because their brains are able to filter out all that noise.
That's why so many people with brain injury have to endure ignorant and often arrogant claims that they are faking it, pretending, or simply aren't motivated enough. I've had neurologists yell such things at me in front of my family. Thanks -- that will help (even if you were right and not ignoring my brain scans). Why is it neurologists are 10+ years behind in understanding brain injury?
Keep me in your prayers as I recover from the epic journey to the bathroom!