Brain injuries are a strange thing. In many cases, survivors of traumatic brain injuries look completely normal. In fact, one friend and TBI survivor recently referred to it as an “invisible disability” when talking about this situation. This is an apt description.
The brain is an amazingly complex organ that is still far from being completely understood. The brain controls life-sustaining functions, voluntary motor function, conscious awareness and thought, and even personality.
Brain injuries often alter some or all of these processes. Variations in injuries, treatment, and recovery mean that two people with relatively similar brain injuries may experience vastly different outcomes.
My own traumatic brain injury nearly 20 years ago included several distinct components, including a subdural hematoma, coup contrecoup injury, and diffuse axonal shearing. In short, I had bleeding inside my skull, my brain was bruised from bouncing against my skull, and the axons that allow neurons to send messages within the brain were damaged and torn.
The symptoms that followed my immediate recovery were varied and debilitating. I experienced petit mal (absence) seizures, vertigo, dyslexia, hearing loss, personality changes, difficulty with focus and concentration, and visual and auditory sensory overload.
Fortunately, the worst of my symptoms improved with time, but some of them persist to this day. The seizures eventually resolved, and the vertigo improved to where it rarely a problem. My focus and concentration improved slowly and with a lot of work to relearn things like being able to read and actually remember what I had read. The dyslexia continues to affect me with writing, but oddly enough poses minimal problems with typing while making it impossible to write in cursive or even to sign my own name without jumbling the letters. The hearing loss, personality changes, and sensory overload have all turned out to be permanent problems.
I have been thinking a lot about my own brain injury and the effects that it has had on my life over the past few days. That is why this post is being written now instead of years ago. A good friend, Debra Dickinson, is also a nomad who is dealing with the effects of a traumatic brain injury. Debra bravely shares her journey on her own blog. Debra was the catalyst for two things that led me to make some interesting realizations about myself. First, reading Debra’s blog led to many occasions where I could relate to what she was sharing. Second, as I spent some time reflecting on my own experiences dealing with TBI in the hopes of encouraging Debra I began to understand with new clarity some things about my own situation.
My personality and interests changed markedly following my injury, though it took time to become aware of these changes. Other annoyances like seizures confused the matter during the early weeks and months.
I spent two years in counseling attempting to deal with the changes in personality and interests. I did not know how to process that I was a different person than I had been previously. During these two years I never did come to terms with the changes, though it was not for lack of effort on the part of my psychologist. The truth is that I am not sure when I came to think of the new me as normal, but I did. I did not, however, manage to come to terms with the changes. I just sort of adjusted to a new normal.
Some of the more obvious leftovers from my brain injury are impossible to forget. The permanent hearing loss, for example, is a constant problem. The fact that I was a different person, with different interests, was somehow forgotten.
The trouble is that my new normal is far from what most people would consider normal.
It was nearly two years after my brain injury when my interest in minimalism and extensive travel began to develop. This is not a coincidence, but is part of the new personality and interests that emerged following the brain injury.
Simplicity and minimalism
Simplicity and minimalism, for me, are literally essential. I am compelled to reduce everything to its simplest form and to eliminate anything else. It is a compulsion, and my mind cannot rest in the midst of clutter. Even organized clutter is not tolerable because I am still thinking about the excess stuff in a box, drawer, or closet.
This compulsion for simplicity and minimalism is not limited to physical possessions. It also applies to digital clutter, workflow, lifestyle, and more. Everything must be as simple and minimal as possible or my brain just keeps on working trying to find ways to simplify.
Travel too has become essential. I just cannot stay in one place for more than a few weeks without experiencing increasing wanderlust. A few months is the absolute maximum that I can handle being in one place and that comes with increasing mental distraction. Spending more than a few weeks in one place results in my mental focus declining as I am increasingly distracted by thoughts of changing the view and pursuing a new experience.
My inability to deal with visual or auditory stimulation has perplexed more than a few people, though likely Terri and my children dealt with this more than anyone. The human brain normally filters out the majority of sensory input so that only input the brain deems important is thought about consciously. My brain no longer filters everything properly, particularly auditory and visual input, so noise or visual activity completely overwhelm me. The result of this sensory overload is that I may shut down mentally or become increasingly agitated and anxious as the “fight or flight” response starts.
A perfect example of this is when I am a city. The noise and traffic completely overwhelm me and I quickly begin to panic as I try to find an escape. Depending on how rested I am and how calm my brain is, I may make it from a few minutes to a few hours before I start to become overwhelmed. It is never more than a few hours.
The sensory overload makes it impossible for me to spend any time in a city or in a noisy or busy group setting. I have to escape because the anxiety builds to the point where “fight or flight” are the only two options and one of them must happen immediately. As a consequence, I try to avoid cities and any necessary trips are planned for when I a not tired, traffic will be light, and I can get in and out in 1-2 hours at most.
I cannot change the effects of my brain injury, but can only learn the best ways to manage those effects. The reality is that I was fortunate to survive the injury so dealing with permanent issues like hearing loss, personality changes, and sensory overload is a small price to pay. This does not, however, mean that the effects can be ignored or wished away.
Minimalism and simplicity are essential for my sanity. My brain does not stop when there is clutter, excess, or disorganization. The mental distraction prevents me from focusing on more important things (like my work) and kills creativity. I have to live a simple life in order to function.
Nomadism is essential for my sanity. Staying in one place for more than a few weeks or months causes my brain to become hyperfocused on escaping. The more time that passes, the more the anxiety builds until it is not only mental but emotional as well. I have to be a nomad in order to function.
Spending extended amounts of time in quiet and peaceful environments is essential for my sanity. The sensory overload from auditory and visual stimulation makes it impossible for me to spend time in chaotic or distracting environments. I have to spend most of my time in quiet, peaceful environments in order to function.
I could write more, but I think this at least touches on the big issues that I still deal with from my brain injury. I was fortunate, not only to survive but to recover better than many people who suffer a similar mechanism of injury. The fact that I am fortunate, however, does not change the fact that it was a life-altering injury. I am not “normal” and I am not the same person that I was before my brain injury.
N.B. Visit my friend Debra’s blog for an excellent and bravely honest chronicle of living with the effects of brain injury and the ways that spending time in nature as a nomad can actually promote healing.