These ruminations begin with reading a recent Facebook post….
A little while ago I read this Facebook post by Elizabeth Gilbert.
As someone who lives with a brain injury, it was hard for me to take in. Gilbert describes a moment of cognitive-emotional chaos, where she cannot use her thoughts to control her thoughts OR emotions. She wrestles until she goes into her heart and rests for a minute, not looking for solutions. “Then I remembered,” she says, “I cannot use my mind to help my mind, when my mind is in distress.”
The heart is indeed a second brain with a network of 40,000 neurons that sends more signals to the brain than the brain does to the heart. We don’t listen to our hearts enough and they are an unparalleled seat of inner wisdom. She’s right, that attempting to wrangle thought-feelings with thoughts is a misguided errand. Heart-listening was a wise move on Elizabeth Gilbert’s part.
It was this line in her post that got to me, though: “This has happened to me before. But only once or twice.”
Only once or twice. That idea floored me. I couldn’t compute. Imagine if that pencil squiggle of a brain in her graphic were a daily reality and the heart were no remedy for it? That is exactly what many brain injury survivors live with.
Before and After
I lived with the daily trial of chronic anxiety and depression before my brain injury in 2015. Yet, for me, the cognitive-emotional chaos of brain injury was far worse, in a different category, on another planet. The injury carved a chasm in my emotional processing much deeper than anything I had experienced before. On top of that, I lost executive function, the ability to put on the brakes for my emotions.
Ride a roller coaster without brakes and tell me how fun that is.
Not to mention the fact that I lost short-term memory function, the ability to hold an idea or piece of information in my mind long enough to act on it; an active sense of past, present, and future, that is, a sense of being in time; language processing and communication capabilities, vision, balance, sleep, and higher intellectual functions (did I mention I couldn’t remember how metaphors worked? Few things could be more tragic for a poet.).
My usual emotional threshold was obliterated.
I had no control. Even when I tried coming out of my head and down into my heart as Elizabeth Gilbert did, it did not restore control—because I had a brain injury. I could not rely on my emotions to be stable because the brain that controls those emotions was broken. It was an experience of being boiled alive in an emotional soup for entire months and then entire days and then parts of days.
Cognitive-emotional chaos is the reality that many brain injury survivors deal with. I have lived with it in some form daily for three years.
In the first few years of my recovery I would careen off an emotional cliff multiple times in the course of a normal day. I would be swimming along, skimming the surface of my life’s experience desperately seeking a foothold to execute daily tasks—like get up and walk around my house, fix myself lunch, go outside—and I would break down crying out of nowhere. My emotion-thoughts on any number of subjects would come up, and I would be unable to do anything but deal with them for the rest of the day. I couldn’t compartmentalize. The overflow was total and overpowering.
I have had this experience three times this week—sobbing uncontrollably, lying in bed unable to figure out how to deal with my emotional turmoil. It affects every part of my life—my relationships, my ability to work, my independence, and my self-confidence. Being relentlessly beaten by your emotions to the point of not being able to function is brutalizing, as is how unpredictable this phenomenon can be. Sometimes I know it’s coming if I’ve taxed my intellect or sensory processing too much. And then there are the hormones or the barometric pressure or emotional stressors that scribble over my experience and send me writhing to the floor.
My brain has made so much progress in rewiring for control.
The thing is, I have been improving. This emotional shutdown has not been happening on a large scale nearly as much as it did in those early years. I can feel the tears coming while doing some daily task, and I don’t need to stop and sob for an hour to move to the next point. Such are the vagaries of recovery. The holes gashed into my brain by that fateful hit to the head are still there. The chemical-electrical pattern of shock, devastation, grief, confusion, horror, and lack of control that the injury created in my brain, is still there. It only takes the right trigger, the right activation of that trauma energy to send me spiraling into PTSD that shuts me down.
When the Abstract Becomes Concrete
These “Abstract Animations” are the best illustrations of living with brain injury I have ever seen. They were not created as such, but they hit the mark exactly: At 13 seconds, a normal pink cranium crumples in on itself in a confused frown. At 23 seconds, a black gelatinous brain shrinks into the figure of a person physically writhing in the wrapper of his own brain, desperately trying to escape. A blow dryer melts the pink head, while a fluffy swirl of magenta dust spirals upward as a person’s eyes loll in her head.
The illustrations of a person encased and bound by a substance out of their control are the most poignant. That is exactly, exactly what it feels like to live with a brain injury.
The old person who used to be able to use her brain to do certain things is trapped, desperately seeking ways around and out of that maddening tangle. The brain rewires to compensate for loss, but if you catch it at a bad time (say the barometric pressure is off or your hormones are off or you have a virus or you didn’t sleep well or you ate the wrong thing or maybe something sad/disturbing/physically challenging happened or maybe a combination of all these things), the brain can’t deal and goes into fatigue, or reverts to that pattern of pain, or tries to go through old pathways that just aren’t there any more.
Blessed Illusions of Control
Although we are not really in control of our reality, an idea that can easily freak anyone out, a well-functioning brain (or a brain that’s functioning well enough) gives a lovely illusion of control most of the time. It’s a strong buffer against the chaos of the universe. If the chaos lives inside the physical structures and chemical workings of your own brain, life is a living nightmare.
Not being able to exert a normal level of control over multiple functions of your brain, is a living hell.
Reading Elizabeth’s post is frustrating because she was able to gain a measure of control over a temporary experience. She was able to come out of it, just as she was eventually able to come out of her experience with situational Depression. She could regain control. To live with brain injury is to climb, climb, climb, constantly fighting for a foothold on the mountain, a measure of control that is fleeting, or, that once made seemingly permanent can temporarily, mysteriously, and viciously vanish into the storm. Out of a clear sky.
To build neural connections and try to grow new neurons just to get back on your feet in adulthood is a mammoth ascent, one that numerous brain injury survivors endure for years.
This vast challenge is largely unseen and is misunderstood by most. I am desperately seeking to work through the constantly fluctuating internal weather of my brain (compounded, complicated, and damaged by injury) to regain previously normal function, to have more sunny days than cloudy, and those without migraine. To organize a day without breaking down. To remember and execute, to read without losing comprehension, to walk without stumbling, to run without pain in my head or my body, to be out in the sun or to drive at night without pain in my eyes or head, to write or think without pain in my head or losing stamina, to go through a day without my steam running out and ending in a puddle of tears, confusion, and inaction. This is climbing Everest in a storm.
The horrible reality is, if anyone were to be injured in just the wrong way, or hit their head one too many times, this could be their reality, too. It could happen to anyone, and no matter how strong that person is (even the strongest men and women on earth are athletes who experience brain injury), they would climb the recovery mountain. My experience is not beyond the norm of what a brain injury can do to a person. It’s well within it.
The loss of life, work, relational satisfaction, fulfillment, and contributions to the world that millions of people with long-term effects of brain injury suffer is incalculable. In my life alone, those losses have been incalculable and so chronically devastating that I am still trying to describe it three years later.
Brain injury is a hell that is encountered and relived over, and over, and over again. The injury, until healed enough to not be noticeable, exists in the electrical and neurochemical ecosystem of the brain, causing confusion and creating pain. Getting back up to climb the mountain is a monumental feat every time.