For six and a half years I worked in the brain injury field in Delaware. It was an experience I won’t soon forget.
I was nine months pregnant with my second child when I held my first fundraiser at Sam’s Club in Dover. A volunteer helped me staff the table and ask for donations. A middle-aged man walked by, saw our banner, and said, “I’ve got a brain injury.” I was about to respond to ask him how it had happened, when I realized he was making a joke at our expense. He laughed and walked away.
I seethed. If you really knew how serious brain injury can be, you would NEVER joke about it, I wish I had said. Still, at that point, my knowledge was pretty limited.
When they happen, brain injuries change people forever. People that sustain brain injuries often think of their lives in terms of “before” and “after” their injury. Often, their lives are ripped apart. Sometimes they’re able to keep it together. It depends on the person and the strength of their network of support.
There are two types of brain injury. The first is traumatic, also known as TBI. We hear about TBI in sports — football, mostly. The CDC defines TBI as being “caused by a bump, blow, or jolt to the head that disrupts the normal function of the brain.”
The second is acquired brain injury (ABI) which is not caused by a bump or blow but instead is caused by some kind of internal change. Stroke, lack of oxygen, disease, infections, parasites… these can all cause ABI.
In my six and a half years in the brain injury field, I saw more than I ever wanted to see.
The woman who had a TBI and was dumped by her husband in a state facility for almost a decade.
The man who had a motorcycle accident and was thrown face-first across a highway and lived to tell about it… sort of. He gets his words mixed up. (And he was wearing a helmet.)
The woman who suffered a stroke and lost her ability to speak and could only cry or laugh to communicate her feelings.
The man who lost all affect (“emoting” for my millennial readers) and stared blankly as the wheels turned behind his eyes.
The woman in our art club that drew everything on a slant.
The man with a slur who couldn’t stop leaning to the left.
The young man that survived a shotgun blast to the head after being mistaken — by drug dealers — for a completely different person. (He had a quarter of his skull missing.)
The 21-year-old college student who contracted cytomegalovirus which caused brain damage and erratic changes in his behavior. Up until then he had his whole life laid out before him. I remember thinking, He is his mother’s only son. What horror she must feel. Our staff worked with him for months to teach him how to use a spoon and sit still in a chair.
These people grew up normal and had lived full lives before their brain injury. They had careers. They had goals. They drove cars and picked their kids up from school. They went shopping and made dinner.
They had an identity.
So what happens when the brain gets injured?
Personalities can change drastically. My mother’s friend had been a fun-loving young woman prior to her brain injury and became bitter, discontented, and extreme in her religious beliefs. Depression can kick in, too.
Memory is often impacted. Sometimes this comes in the form of a loss of long term memory. Sometimes a person with a brain injury has an inability to form new memories. Like this guy.
Emotions sometimes have a life of their own. A woman who had multiple strokes cried uncontrollably over dog food and diaper commercials. “I don’t know why I’m crying,” she’d say, wiping her eyes.
Brain injury can cause changes in your senses. Take, for instance, the woman who had an aneurysm and lost her senses of taste and smell. Some people are hypersensitive to certain stimuli, such as bright light or loud noises or being touched by someone else.
Changes in cognition — the way we see the world — can also change. A man with a brain injury worried constantly about his money being safe and his rent being paid. (Even though we reviewed his finances with him twice per day.)
Language is another area that is commonly affected by brain injury. One of my clients used the word “numbers” to describe his fingers. Yet another could not find the word for “ball” and described every other round thing in the universe.
These are some of the more common effects of TBI. Did you notice any common theme? None of them are physical impairments.
Brain injury is called “the silent injury” because its effects are not always obvious. Or they are mistaken for something else entirely.
It happens all the time.
A woman that repeats the same stories over and over is labeled “crazy,” when in fact she has no memory of telling the story the first time.
A man that uses the wrong words to describe what he wants at the hardware store gets an unusual glance from the clerk behind the counter.
Let’s talk about the physical aspects of brain injury.
Each person’s body and brain are different. Where on the brain a person sustains their injury plays a part in how the injury shows itself physically. And a person with brain injury can experience many different physical impairments even if that part of the body was not injured.
Headaches are common after TBI, for obvious reasons.
Poor balance can make it difficult to stand or walk.
Changes in spasticity — the tightening or loosening of muscles — often results in a limb being frozen in place or rendered completely useless.
Developing epilepsy or seizures are terrifying and can lead to injury, especially if the person experiences them while operating a vehicle or while alone.
Paralysis (partial or complete), which can lead to the use of medical equipment such as wheelchairs and walkers.
Changes in bodily functions such as incontinence.
As if these aren’t scary enough, there’s also death.
Again, some of the physical characteristics of brain injury appear to be something else entirely.
In one poignant example, a man was walking down the street, struggling to stay upright, tilting from one side to the other and barely remaining erect. He was mistaken for a drunk and was arrested for public drunkenness because no one — not even the Po-Po — could tell the difference.
Our brains are responsible for carrying out the work our bodies need to do. The brain controls our breathing, sleeping, eating, muscular function, vision, hearing, taste, smell, expressions, coordination, ability to focus, and understanding of the world around us. When the brain gets injured, some stuff gets messed up. Some of the functions can be recovered with targeted therapies, some cannot.
So, how does brain injury happen?
According to the Shepherd Center, the most common causes for a TBI are motor vehicle accidents, falls, violence or gunshot wounds, or some kind of military attack or bomb blast.
For ABI, causes can include stroke, lack of oxygen (also called hypoxia), tumors, cancer, brain infections or inflammation, or other infections. I have seen everything from the cytomegalovirus cited above to cirrhosis of the liver causing an ABI.
There are all kinds of brain injuries, from mild to moderate to severe. They vary from a mild concussion to a penetrating brain injury. (Brainline has a comprehensive guide on these… if they don’t make you squeamish, you might be a neurosurgeon.) The brain can get injured just from getting banged around inside our skulls, because the intracranial space is filled with pointy stuff.
For each kind of brain injury, there are specific treatments, therapies, and surgeries to help correct the problem. But the brain must heal itself, and sometimes treatments, therapies, and surgeries are used to stabilize the brain for that recovery.
At some point, though, the person that suffered the injury has to take charge of their own continued progress. You see, when a brain gets injured, stuff gets jumbled around, and connections that were once there can be lost. These are called neural pathways — here’s an article by Dr. Lisa Christiansen on the topic. To make a long story short, neural pathways are built over time with repetition — it’s the brain function responsible for our learning. When connections are lost, the brain must build new connections to restore function. We can recover some of function through practice, as if we are babies again, learning to walk, talk, and behave.
Brain injury has other serious outcomes. People with brain injury have significantly higher rates of divorce, suicide, unemployment, bankruptcy, and subsequent injuries. Over and over I saw adults with brain injury lose their jobs, lose their healthcare, and wind up divorced, bankrupt, and living with their parents.
There’s another unpleasant aspect that I ran across frequently: abuse at the hands of family members.
A woman stepped forward to serve as her adult nephew’s guardian and paid caregiver, and Medicaid footed the bill. She moved him into her house. In just a few months, the young man appeared dirty and thin, with sores on his skin, wearing the same unwashed clothes I had seen him wear numerous times. She ignored him, pocketed the money, spent his social security money, and kept him from other family members… even his own children. He did not have words to protest.
An unemployed mother moved her son out of a Maryland long term care facility to an apartment Delaware, because she knew his benefits would pay her rent. He never had anything to eat. He was thin and always hungry. However, she always had drugs and would “dip out” in our meetings while we were discussing her son’s participation in our program. She would slump in her chair, dead to the world, then perk up momentarily and say, “What about overnights?” We’d sigh and say, “This is a day program, ma’am.”
A man whose own suicide attempt caused his catastrophic brain injury had socked away tens of thousands of dollars from his former business. One day, the money was gone. The only people who knew about that money was his family.
Brain injury is not just tragic for its victims; it also destroys families.
When you’re this close to the human experience, you get to see the bad and the ugly. But you also see the bright spots, appreciate small victories, and witness the strength of the human spirit.
A man lost all vision in his right eye and gained it back five years after his injury, after his doctors thought it was a lost cause.
A young man succeeded in becoming a valuable volunteer through the use of cues and strategically-positioned signage.
An older gentleman, paralyzed and confined to a wheelchair, taught another man how to read and spell words.
A young woman found she had a talent for organizing.
A mother got a second mortgage to pay for renovations in her home so she could move him in when he lost his apartment. Volunteers stepped forward to pay for and build a custom wheelchair ramp so she could get her son into her home.
With community-based supports, a man got his own apartment after being stuck in a senior living facility for two years.
Right in front of me, a woman learned to transfer from her wheelchair to a chair by putting her whole weight on a service dog’s shoulders, and he stood there, strong, bright-eyed, and happy to help.
We hosted a focus group of people with brain injury and invited leaders of Delaware’s state-sponsored disability programs to tell them firsthand about their hardships. Some struggled to find the right words, but others spoke eloquently. It didn’t matter. They were heard.
We celebrated every victory — no matter how small. And sometimes, the moments were so great that they took my breath away.
Finally, let’s talk about prevalence.
Every year, about 1.5 million people sustain a brain injury. According to the CDC, of that 1.5 million, about 230,000 people are hospitalized and survive. About 50,000 people die. And between 80,000 to 90,000 experience the onset of long-term disability.
More than likely, you know someone who has a brain injury. If you’re honest with yourself, you may even be a survivor of brain injury.
I was thirty years old when I hosted a symposium on brain injury in Delaware with speakers from a bio-mechanical engineering firm. The presenters demonstrated their testing methods and showed how people sustain brain trauma from car accidents, football, and oh yeah, falling off kitchen chairs. It was a fascinating demonstration that left me…. Wait, did you say kitchen chairs?
A memory flashed through my head while I stood there in the back of the room watching the presentation:
I was 18 years old, I lived in Philly, and I didn’t own a car. SEPTA bus drivers were on strike, so after my shift at the pizzeria, I roller bladed home. I was nimble on roller blades, but on one very dark night, I couldn’t avoid a chunk of pavement that had shifted out of place in the sidewalk just three blocks from my house. I hit that baby going hard and fast, and I wasn’t wearing a helmet. I was catapulted into the air and landed headfirst on the sidewalk. While driving the opposite way up our road, a person actually heard my head hit the pavement and stopped to drive me home. I did not go to the hospital. When I woke up the next morning, I had an egg-sized swelling on my forehead and I was in agonizing pain. The concrete had sheared off an entire patch of hair, which grew back in spikes when my scalp healed.
I’m not a scientist, but even I could do the math on this one. I realized there is absolutely no way in Hell I landed headfirst on concrete with that amount of force — my whole body weight plus momentum — and didn’t sustain some kind of brain injury.
It was a wake-up call, to say the least.
So my family and I wear helmets when we ride bikes, although I once thought helmets were just for dorks. I’m super careful when I have to climb a ladder or stand on a chair. I don’t drive aggressively. I make sure there are no tripping hazards on the stairs or floors in our house. I watch my feet when I am walking up and down the stairs. And if someone in our family whacks their head on something, I’m there like a flash with a bag of frozen peas and a flashlight to check their pupils.
I am hyper-aware of the value of a healthy brain, and I do all I can to preserve the ones I can. Because I learned one more thing during that six and a half years: most brain injuries can be prevented.
You can learn more about brain injury by visiting the Brain Injury Association of America. Make a donation to them if you want to make a difference.
Thanks for reading.
Esther Hofknecht Curtis, MSM-HCA is a former certified brain injury specialist (CBIS) and a freelance writer living in Dover, Delaware. Follow her on Facebook — go to https://www.facebook.com/TheArdentReader19977/