I am continuing my journey through Jill Bolte Taylor's book My Stroke of Insight. Over the past year, my soul has craved an understanding of what happened during the Brain Blip I experienced in my late teens. Funny that during all the years I spent in therapy it was a part of my life I discussed very little. Perhaps because I didn't even have the language to explain what had happened to me. Taylor's book is giving me that language. I didn't realize how important that was until now. How do you properly convey an experience when you don't even know the words to use?
As I read Taylor's experience, I wrote quite a bit about my own brain and the changes it went through so many years ago. I'm also going to dig up my journals from that period of my life. I think they will shed an interesting light and provide me with some much-needed answers. When I go seeking understanding, my ultimate goal is to derive empathy, for myself first, and then for others. Self-acceptance has been long in coming for me. Anything that can assist that allows me to make leaps forward in my life and in my evolution as a human being.
By the time I turned 17 and was fully in the middle of the brain blip, a diagnosis of exclusion was made, meaning that I went through rigorous testing (17 viles of blood taken) and when nothing else was determined to be the cause of my symptoms (which I could mostly only describe as physical--sore throat, fatigue, swollen glands, muscle aches and pains, etc), the only thing left was the label Chronic Fatigue Syndrome (CFS). Now, I've come to hate labels in every form, but there's no other label I've worn that is more meaningless and empty than the CFS label. Saying I was chronically tired is like saying a diabetic really likes sugar. It says nothing of severity, impact, or etiology.
Even with all the research that has been done since I was diagnosed in 1992 (which isn't much compared to other illnesses), there has yet to be anything conclusive determined about this syndrome. Which makes it easy for people and doctors to dismiss as "psychosomatic". Another word I hate. Just the thought that we need a separate word to label physical symptoms that have an underlying emotional component smacks of ignorance to me. Of course emotions underlie physical symptoms. Isn't that what all the mind/body research is showing us? Don't make it out like it's some anomaly in the population that makes a person's suffering less or somehow more controllable. You find me an illness that doesn't have an emotional component, where stress isn't a factor in either its acquisition or recovery. Okay, I digress. This topic gets me pretty heated up.
The label doesn't say much about the cognitive dysfunction. And even the fatigue has never been well-understood, although recent research suggests a mitochondrial alteration. I think the best explanation I've seen yet is in Taylor's explanation of what happened to her post-stroke (My Stroke of Insight, page 90):
"By day four, I was still spending most of my time sleeping as my brain craved minimal stimulation. It was not that I was depressed, but my brain was on sensory overload and could not process the barrage of incoming information. G.G. [her mother] and I agreed that my brain knew best what it needed to do in order to recover. Unfortunately, it is not common for stroke survivors to be permitted to sleep as much as they would like. But for me, we felt that sleep was my brain's way of taking a "time-out" from new stimulation. We acknowledged that my brain was still physically traumatized and it was obviously totally confused concerning the information coming in through my sensory systems. We agreed that my brain needed quiet time to make sense out of what it had just experienced. For me, sleep was filing time. You know how chaotic an office can become if you don't take time to file? It was the same for my brain - it needed time to organize, process and file its hourly load."
When I was knee-deep in the brain blip I was sleeping 12-17 hours a day. It wasn't a choice. There were definitely other things I wanted to be doing, like socializing, going to parties, movies, dinners and dating. But I couldn't. Even lifting the covers off my sore, exhausted body was a chore. Each energy expenditure had a cost.
But Taylor's explanation of the need for sleep as the brain's filing time brought out a YES! from the deepest parts of my soul. To this day, when I'm in the midst of change or trying to make sense of something, the running question in my mind (and the one my friends hear the most) is: Where do I put this? This means, where do I put this new information, this new experience, this new learning. During these periods, I tend to sleep more. And when I awake I am amazed to find the information settled into a file. For me, the most unsettling bits of my life (and the times when I sleep the most) are when there is a lot of profound change happening. After leaving the Jehovah's Witnesses, I slept a lot. When I'm going through therapy I tend to sleep a lot as well. Making sense of my environment, both internal and external, is hard work.
Reading this makes me think less in terms of dysfunction and more in terms of evolutionary settings that protect the brain from further trauma. Is this gravitation towards sleep during times of upheaval a survival mechanism? Why do we need to label it as an abnormal condition? Perhaps it's just the brain doing what it needs to do.
The interesting thing is that, in my own life, as the cognitive dissonance heals and there are more files for me to put the new, I find I have more energy. I can run most days on 6-8 hours sleep, which is a state of health I never thought I'd see.
The brain is such a vast place. There are no labels that can possibly contain it.