It was the Easter just after I turned three years old. I was dressed in my best clothes - a ruffled pink dress my mom had hand sewn, lace-topped anklets and shiny white mary-janes. I stood on the front porch, waiting with my sisters and mother for Daddy to take our picture. The youngest and shortest, I stood in front. I must have locked my knees while waiting for him to focus the camera because I passed out and pitched forward. There was no railing on the porch, so I fell at least two feet, landing face first on the rock-hard ground.

Regaining consciousness in my dad’s arms, my bloody nose making a mess of his starched white shirt and my dress, I saw my sisters standing in front of us, their hands over their mouths, nervously giggling. In fact, I believe I remember this accident because everyone was laughing. As an adult, I understand their laughter stemmed from relief. According to family legend, I looked at all the stains and said, “Oh no! I’m going to lose all the protein out of my blood.” It was a peculiar concern for any small child to express and certainly, they believed, a sign I would be all right.

As I grew, I became known for my clumsiness. I took for granted that I was accident prone. This is common. One head injury tends to lead to another and another due to distortion in how the brain processes incoming information. For example, my visual processing became distorted. Prescription glasses made objects sharper in appearance, but did nothing to improve my poor depth perception or poor judgment of speed and distance. Consequently, even simple games such as jacks became a contact sport. 

Because I was afraid of further injuries, I avoided physical activities. My fine motor skills flourished because I sat and practiced my penmanship and learned calligraphy rather than try to be physically active. Unfortunately, avoiding an active life just made me less sure of myself physically and even more uncoordinated. I was smacked in the face by a medicine ball in PE and was unconscious for probably about forty minutes. A softball rolled off a roof and hit me on the top of my head. And there was the time I bounded down stairs to answer the phone, only to bang the top of my head on the underside of the door jamb. I do not know how long I was unconscious after that. There were too many “minor” incidents to recount but two major bicycle accidents stand out.

The second occurred when I was nineteen. I have no idea what happened that caused my bike to crash on the left side of the street while my body ended up draped over the right side curb. I regained consciousness and walked my bike home, embarrassed by my clumsiness and thinking I was only a little shaken. In truth, I was so disoriented it took me a few days to realize I had crushed three ribs.

The first bicycle accident seemed far worse. A neighbor kid loaned me his bike, saying only that I should be careful because the handbrakes grabbed. I had never used handbrakes and thought that a fancy bike like that must have both hand and pedal brakes. It didn’t. On a slight decline in the trail, I tried to slow myself by pedaling backwards. I lost control and slid several feet on the left side of my face. I drifted in and out of consciousness over the next couple of days. It happened right before I entered ninth grade.

It was terribly embarrassing to start my freshman year with a raw hamburger face and blood pudding eye. Of course the visible signs of my injury faded over the next couple of months, but out of sight, inside my skull, things were starting to fall apart, at first slowly, but then with gathering speed. No one, however, connected the injuries with the problems and distorted thinking that eventually set in. Instead, the changes were chalked up to being a teenager. You know teenagers – they are so lazy, volatile, rude, self-absorbed, addled – just fill in the blank with a negative adjective.

I had been elected president of the ninth grade choir. Singing in a choir had been fun. The choir director clustered weaker singers around a strong singer so the others could tune in and rely on someone nearby hitting the right notes. I had been designated as one such strong singer, but over my freshman year, my capacity to match notes disintegrated as my auditory processing became distorted and the result was public humiliation. The choir director, who did not tolerate sloppy singing, berated me in front of the entire choir. I did not continue with music classes after ninth grade.

Eventually, distortion of my auditory processing made understanding casual speech difficult. I often “misheard” people or completely missed whole words or phrases. I became very self-conscious and dreaded having to ask people to repeat themselves but if I didn’t watch people’s lips when they spoke, I missed out on a great deal.

I tried to stay in theater, something I had always enjoyed, and was cast as a lead in a high school play. I knew my lines – or thought I did. While I delivered my soliloquy in the middle of the first act, center stage, in front of a full auditorium, the stuff of nightmares happened. My brain stopped cold in mid-sentence – abandoning me. I had no idea what I had been saying; what I was supposed to talk about. The character I thought I inhabited dissolved and I stood there, stammering that I didn’t know what to say; receiving no comprehensible clue from the prompter behind the curtain. I stumbled through the rest of the play but that was the end of my acting career.

Of course, the head injuries took a toll academically. Reading, a skill I had acquired early, one that had been an escape for me when other kids outdoors playing, became difficult when words would often, but not always, become just marks on a page, holding no meaning. I thought I was losing my mind and told no one, frightened I would be institutionalized. 

As high school progressed, I simply could not keep up with my classmates and had to put in long hours to do homework that others got done in class. I hung on to a pretty robust vocabulary, but my ability to read degraded further and math concepts seemed as unattainable as a trip to Jupiter.

Because I could not always read the subtleties of social cues, I did not know how to be a friend and dating was disastrous. People became a foreign species. I was fascinated and wanted to learn more, but I was not part of the tribe. Even in groups of people, I felt lonely.

Up until my senior year in high school, I worked as hard as I knew how to compensate for my reading challenges, which seemed to be worsening as time passed. I managed to get good grades, but my capacity to work around my problems seemed to slip beyond my grip. Eventually, focusing became impossible. During my senior year, I gave up. 

Even so, my accumulated grade point average and extracurricular activities were enough that I was awarded a journalism scholarship to the University of Washington. I turned down the scholarship and opted to attend the local community college, but even a light load there proved to be beyond my capacity.

My family valued education and I couldn’t imagine what else I was supposed to do. I kept enrolling, even though I often dropped classes after a couple of weeks and ended up with only a few credits at the end of the term. Tests engendered tremendous anxiety because I did not know what I knew. This is very hard for most people to understand, but I hear the same complaint from many head injured people: Brain injured students walk away from taking a test with absolutely no idea how well they performed until they receive a grade. Somehow some other part of the brain answers questions on its own.

The truth was, I felt like a fake through most of my academic experiences. Many people seemed to think I was intelligent, but I was pretty sure they were wrong. I could never predict what would stump me. I could not understand myself and often felt ambushed by my own brain. At times, I could feel a dense fog rolling into my skull, obscuring thoughts, sapping me of the little energy I had and making situations seem surreal. Other times, I felt dissociated from reality, as though I was hovering over myself, watching scenes unfold from a distance. I had no control over the actor in the body that seemed like it must be me. Again, I knew I should never tell anyone what I was experiencing.

Things started to turn around for me after a friend gave me a gift certificate for a full body massage from a licensed massage therapist. My normal lethargy shifted and I felt energized. I went home and thoroughly cleaned my entire apartment. That in itself was a minor miracle and I was so impressed with the effect it had on me, I started receiving weekly massages. After a few weeks, quite by accident, I realized my reading had improved – both speed and comprehension. I still had plenty of problems, quirks and interpersonal challenges, but I had turned a corner.

Reading everything I could find about massage, I discovered Ashley Montagu. His book Touching: The human significance of the skin changed the way I experienced the world. He pointed out that there is no place on the skin that is not directly connected to the brain by sensory nerves. His statement that the skin is the surface of the brain became my mantra.

It was a circuitous road with many setbacks but as I learned more and grew stronger and more whole, I became a massage therapist. That eventually led to studying stress management which segued to biofeedback and neurofeedback. It took a long time, but I now have a Master’s degree in Behavioral Medicine and am a board certified neurofeedback provider.

The piece of my story that may seem hard to believe is that through all this I never considered myself brain-injured. I thought I was a fraud, stupid, mentally deranged and deeply flawed as a human being, but never brain injured. It wasn’t until I started studying the brain and working with people who had similar impediments that I figured out all those accidents had taken a toll on me.

This seems to be true for many people who are challenged by ADD, ADHD, fibromyalgia, depression, chronic fatigue, disordered sleep, mental fog, memory lapses, emotional lability, chaotic lives and other problems affecting the mind, body and emotions. 
The exciting news is life can get better.

The more I learn about brain injuries and their consequences, the more I appreciate the good fortune that led me to the therapies I have come to use. It is well established that there is a link between brain injuries and neurodegenerative diseases such as Parkinsons, Alzheimers and other forms of dementia, but instead of continuing to degenerate, I am better balanced, both emotionally and physically, and more functional than I was forty years ago.

People struggling with brain injuries need to know there is hope.