Ellicottville, NY RODEO

Sunday, November 1, 2015

Life After Brain Injury

This fall I finally got my first smart phone. I'm trying to use it in place of my Kindle Fire Reader, my lists, my music player, my calendar of memories, my binders etc. It's going well. What I'M not used to though, is how short the battery lasts, usually just one full day. My old flip phone lasted a week, or sometimes more! I frequently wake up to find my phone at 23% battery. Forget to plug it in.  And in a short while it starts flashing 15% battery life left and then it “shuts down”, usually when I’m in the middle of texting something to someone. UGH. 

Because of my brain tumor, craniotomy or series of head banging traumatic brain injuries my brain "shuts down".  The first symptom I notice, and others see is me rubbing my face and ears vigorously. They feel all tingly and hot. Then I notice that I can hear you speaking to me but I can’t understand the words. It’s similar to if you were watching a movie in Chinese; it's loud enough, you just can't understand the dialogue.  When I’m with you, even if you repeat yourself, speak louder or slower – I still don’t get it. Then my hearing becomes extremely acute and I can’t think. It feels a little bit like a headache. Everything in my brain goes in slow motion. My words don’t come out correctly.  Sometimes I swear, stomp my foot and laugh/cry/yell.  It was just this year that I was able to put a name to what was happening to me: Brain Fatigue.  When I’m in Brain Fatigue flooding  also occurs where all my senses become acutely heightened and I get overwhelmed. I'm highly distracted, but now the distractions are even worse. I'm "shutting down".   

You have experienced it before, it’s that head swirling, eyes droopy, angry-sad-frustrated-overwhelmed, I can’t think feeling, you get. Like BEFORE, when I was teaching, I knew it would happen to me on the first day back to school.  I had a whole list of things I wanted to accomplish before I met the children the next day, but I was required to attend six; 30 minute meetings to learn new technology, teacher manuals, regulations and requirements. At those meetings I was given an overview of the new program and about 10 minutes to try and log in and create an account, learn how to use it and be ready to apply it with 25, 8 year olds in my classroom the next day. By the end of the day my head was spinning. I also got this feeling at tax time, while I was preparing all the documents needed for the IRS. The worst for me would have to be a three day conference, like the Equine Affaire, where I really wanted to learn as much as I could so I attended workshops and demonstrations for three days straight from 8am – 9pm.  My head would be swimming and I would be exhausted, my brain power would be so low that I would have to shut down to recharge. Some years would go by and I never would experience brain fatigue at all.   Can you think of a time that you’ve had brain fatigue?

I’d like to connect your experience with smart phone batteries to my experience with brain fatigue.  After a good night’s sleep I wake up with about 36% brain power, like your cell phone if you forgot to charge it overnight. Actions like, getting out of bed, following my get ready for the day ritual, taking my medications with my new compensatory strategies wears my power down about 5% per half hour. If I keep going about my day crossing items off my daily list: feed dog, take dog out, take my pills, eat breakfast, feed the horses, get the mail, open the mail, sort the mail etc. I will end up with face tingling, difficulty communicating, staying on task and making sense of my world.  My body will be saying, “15% brain power left, recharge, recharge!”  But, if I don’t listen to my signals I end up “shutting down” just like your cell phone does.

If I do happen to shut down, it could take days for me to recover. This is when I stay in bed, only to get up for necessities. I also might just type stories for hours, letting all the swirling thoughts and ideas spill out of my head and flow from my fingertips to the paper, because I feel my skull might bust open if I keep them inside. Sometimes recovery includes huge mood swings and inappropriately long sleeping. I am happy to report that going to a rodeo in 2014 took over two days to recover from, where this year I can go on a vacation for a week and it only takes two days to recover!

Brain fatigue doesn’t happen to me with the same frequency it used to.  Now, I have brain fatigue many times throughout the day.  It is currently the most debilitating symptom of my brain injury.  Luckily I learned how to recharge my brain. 

I can “plug in" and recharge.  I call this special time in my new life “Brain Breaks” and they typically last from 30 minutes to 50 minutes- although they do turn into three hour naps if I’m not careful!  Those who spend time with me have seen me trying to block out all sound, sight, noise, smells and recharge my brain. I have to take anywhere from five to seven brain breaks a day, just to make it through my day with no special circumstances.  I use self-hypnosis, meditation, visualization or binaural beats daily.  I’m trying to incorporate music and coloring into my brain breaks this winter.

I also can plan ahead and prioritize my actions throughout the day to conserve my brain power. Just like if you only had 20% battery on your smart phone when you woke up in the morning and you were expecting a very important video message to arrive around 7:30pm. You would conserve your phone’s battery by shutting certain functions down, or shutting the whole phone off if your batter power wasn’t going to last until 7:30pm. You might even try to borrow someone else’s power cord, even though it will take forever to charge your phone.

I conserve my brain energy by sitting and meditating, coloring, visualization, sleeping, being totally alone, or in a sensation dulling deep bath. 
I need to do this if I have an outing, social event, situation that occurs where communicating is paramount like at the doctor’s office, or I need to attend a stimulating event like a basketball game. I can preserve my brain energy and through some aptly timed Brain Breaks I can even charge my brain up a bit past the 36% I woke up with.  
Most people who see me don’t notice anything wrong with me. I can fool people for about two hours at a time into thinking “I’m cured”.  Even my own family doesn’t see me at my worst, because I usually sequester myself in my bedroom, upstairs sanctuary or my newly designed “family room” where we have created a space that is quiet, calm, peaceful and void of distractions.  I’m alone. A. Lot.

Yes, I do get lonely.

What is really exciting to me, is finding out that all people really need brain breaks. You all would benefit from 10 – 15 minutes of some form of meditation in the afteroon and the evening. You all would be much more productive, calmer and happier. And then, I wouldn't feel so all alone taking my multitude of brain breaks each day. 


1 comment:

It is nice to hear from you, thank you for reading my blog.