A TBI presents us with many new things that we need to understand in order to manage our situation better. One of the biggest challenges for me was dealing with persistent brain fatigue resulting from overstimulation throughout the day. Overstimulation I learned, doesn’t always require external inputs – sometimes simply thinking, remembering, or even just trying to remember something can tire our brains much faster than we expect. Conversations are almost always very draining, even when we are just listening.
My time away from work after the injury was five days, during which I still answered emails and handled high priority support requirements. Unfortunately, I don’t have a backup support team, so I had to return to work on the following Monday. I lasted almost two hours before I had to leave. The truth is, the biggest single reason I still have a job is that I was given the opportunity to work remotely on an “as needed” basis. My neurologist helped me arrange this by writing a letter suggesting that this be an option for me. While it was my goal not to abuse this privilege, the truth is the remote time was critical for me. Fortunately, the work I do is almost completely done on a computer, so on most days there is absolutely no difference to the business where I am when I work.
The brain fatigue that hit me each day would come at different times, depending on how demanding that particular day was. I remember having classes for a new software application we were implementing at work a couple weeks after the injury. The class started at 8am, and by 10am I was struggling to both keep up and to keep my composure. By the lunch break I was starting to become dysfunctional – unable to think clearly or effectively process conversations; unable to form clear sentences or speak without hesitation and stuttering. The number of words that were simply not to be found anywhere in my head would grow to a point where I would just try not to talk – along the lines of the old saying, “Better to remain silent and be thought a fool than to speak and to remove all doubt.”
The first sign of imminent dysfunctionality was always a feeling of sensory overload. As my mental processes began to shut down, everything would just become too much; too much sound coming in, too many things to look at, too many requirements to speak, everything simply became too much. I wanted to close my eyes, plug my ears and just go to sleep. Raw, uncontrollable emotions would come boiling to the top, circumventing all the filters we normally keep in place – leaving me unable to suppress the tears or possibly an angry outburst that always seemed to be much too close to the surface. When this happened, I would offer email apologies to anyone affected by my departure, and I would leave work for one of two destinations. If I felt I just needed a short break and then could work remotely (and if the weather cooperated) I would go find a park bench by the lake, fire up my hot spot, and log in remotely to our network. When things were more severe and the feeling of sensory overload was just too much, I’d turn on my out of office email reply and go home.
One of the things I learned early on was that my basement felt good when I was experiencing sensory overload. I could go down to the basement, turn off the lights and close the upstairs door, and eventually I was able to relax just a little. The quiet and the darkness that my basement afforded always went a long way towards helping me stabilize my emotions. I soon began to understand that this really helped me to stabilize my emotions and offered my brain some much needed rest. An additional luxury I was afforded through this was that I was living alone, so I didn’t have to worry about hurting anyone’s feelings because I wasn’t able to communicate like a normal human.
Although a basic level of sensory deprivation helped me to cope, sleep was the only restorative therapy that worked to help me come back to being able to communicate with others and hold my emotions in check. Initially, the magic number for me was 10+… if I could get ten or more hours of sleep, I could wake up feeling like I was able to face the new day. Less than ten made the day challenging; less than nine made things very difficult; and less than eight left me feeling like I’d had no sleep at all and completely unable to face the day.
I quickly learned that I needed darkness to sleep. Since my injury happened in spring, the timing relative to this couldn’t have been worse – the nights were getting nothing but shorter. Closing my eyes didn’t make it dark enough. For some reason, if I could detect any light at all, then I would obsess about it. I already had blackout curtains in my bedroom to reduce the light intrusion from the streetlight just outside, but these didn’t even make it dark enough at midnight. I tried a sleeping mask, which helped with the streetlight, but did little to help while the sun was still up. Before long, I bought a stack of thick black construction paper and layered it on my window to completely black it out. Finally, I had a sleeping space that supported my new need for complete darkness.
As summer solstice and finally the equinox passed, the nights again became longer than the days. The deepening of winter meant it was time to use my fireplace again, so I started to spend more time in the primary living space of my home. It’s never a good idea to have a fire burning in an open fireplace without actively monitoring it. For my first winter after the TBI, I had candles in every room – living room, bathroom, and kitchen. I almost never turned the lights on, simply lighting additional candles when more light was needed.
Let me just say here that even after nearly three years, I still have thick black construction paper taped to my bedroom window to support my sleep cycle and give myself a dark place to go when it feels right. Do I still need it? I really don’t know, but so far, I see no reason to remove it from my available resources.
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