"I could hear the EMT screaming — he said he thought he lost me — but it sounded like I was in a bubble. The feeling reached an amazing point where if I already had done the things that I wanted with my life, I would have let go."
He points out the injuries on his face, including an eye patch that he wears since his motorcycle crash last summer. An outgoing and successful 30-year-old software engineer, the traumatic brain injury (TBI) from his accident caused brain swelling that left him with cranial nerve damage and other life-altering symptoms. His ambulance experience may have been part of the hallucinations that occur as your brain and body are failing, but Keith looks back at that moment as much more.
"The day before the accident my thoughts were around needing more money, getting a bigger place, getting more girls - things that don't matter. I was in typical young, single guy mode," he says openly.
"It sucks to be in this position, but I'm a better person because of my accident. It made me see that my life can end at any moment and I have more self-respect now." Since then, he has tried to learn more about his TBI following a surprising hospital experience. "I was disappointed by the fact that they couldn't fix me at the hospital. Even though I have a really good doctor, they don't even fully know what's going on in my brain now."
This dramatic tale may seem like something from fiction, but it's actually more common than most realize, especially considering that every twelve seconds a person in America sustains brain damage. You didn't misread — count to twelve and someone, somewhere in the U.S. has experienced a traumatic brain injury.
The math is quite simple. There are 31.5 million seconds in a year. When you divide this by the 2.5 million civilians and military members who are diagnosed with a new TBI annually, your result is the same as the number of cranial nerves in the human brain - twelve. [1], [2]
A traumatic brain injury occurs when an external force impacts the brain and impairs certain functions. In a fraction of a second after a car collision, the driver and passenger's heads can smash into the windshield at the same speed that the vehicle was moving, even as the car frame is buckling. It's no surprise that the majority of reported TBIs are results of motor vehicle crashes, with almost half of those hospitalized experiencing long-term disability. [3], [4] Accidental falls, rough play, and contact sports may also lead to TBI, and research has shown that 50 percent of all injuries killing children in the U.S. and Canada include a brain injury. [5]
Memory Lapse: Have We Forgotten Our Brains?
Why is a condition that seriously affects your body's most important control center — your brain — this prominent yet hardly discussed? Many sources say that it is considered to be a rather taboo topic, even by those who are intimately affected. Brain damage is extremely scary, and most who have it feel misunderstood. Unfortunately, many of these individuals quietly slink away into the shadows, overwhelmed and ashamed of their symptoms.
This hidden underworld of brain injury is vast. Recent tallies show that there are one million more traumatic brain injuries annually than all combined cancer diagnoses and more yearly deaths than drug overdose, breast cancer, prostate cancer, or HIV. [6], [7] Since a picture is worth a thousand words, here is a visual:
Many of the varying symptoms of mild brain damage may be subtle and go unnoticed at first, but gradually gain momentum until they interfere with everyday life. One day you notice that your memory is just a bit more faulty than usual. Then you realize that your attention is distracted quite often. The words don't roll off your tongue anymore, and sometimes you want to say something and it simply doesn't come out the way you imagined. You feel sad or disassociated from others, and anxious more than you would like to admit.
The Ripple Effect of Brain Injury
These could just be natural imperfections, the small faults of our individual bodies and personalities. On the other hand, they could be signs of secondary progression from TBI. Dr. Anlys Olivera, a Brain Injury Unit Researcher at the National Institutes of Health, explains that the difficulty in identifying symptoms of TBI until they worsen is partially why early signs go unnoticed.
"Doctors sometimes can't get to the root cause because there is no protocol specific to TBI treatment over time. Symptoms can come six months, two years, or 10 years after injury, and patients are not aware that more issues can follow. Insurance will only cover immediate 'standard' care, but may not cover alternative care strategies for chronic post-concussive symptoms. This is a huge problem as well," she remarks.
Dr. Olivera ties this to the serious oversight in military protocol, where certain soldiers are receiving a dishonorable discharge regardless of behavioral changes that could be related to TBIs experienced during training or combat operations.
"It's a shame. There is no consideration for the chronic impact that TBI has on these soldiers and the effects on their judgement and reasoning skills, or even their personalities," notes Dr. Olivera.
"Patients are often not even aware of these alterations because of their brain injuries."
One out of three military service members are returning home with a traumatic brain injury in addition to other mental health issues such as PTSD. [8]
The truth is, disabling and potentially life-threatening brain injuries are happening to your children and friends on a regular basis. Every kid taking a nasty skateboard fall or jumping from a rooftop in a popular YouTube video is not actually going to the hospital after the camera stops rolling. For those who are, roughly 90 percent of reported TBIs are considered to be "mild" during clinicians' ER assessments and they are sent home that same day. [9]
Don't let this classification fool you — even "mild" injuries can be quite life-changing. There are often multiple symptoms coexisting, with common types including memory, problem solving issues, speech disorders, and emotional instability. [10] Although in most cases, there is not much that hospital staff will do unless there is immediate bleeding or swelling in the brain.
Lies, Neglect, and Flawed Healthcare
TBI remains somewhat under the radar regardless of bold headlines that include the concussion-related death of a young college athlete whose teammates anonymously sent details of coaches' extreme neglect to the player's parents. The NFL settled a $1 billion lawsuit with 20,000 former players in 2013; however, the case never covered depression, mood disorders, and CTE (chronic traumatic encephalopathy), the brain disease that has been featured in the recent movie "Concussion." [11]
Up until a few days ago, the NFL claimed that there was not enough scientific evidence to support CTE. This changed drastically when the NFL's vice president of health and safety became the first representative ever to publicly acknowledge a link between head trauma from football and degenerative brain diseases, including CTE. His comments mark a pivotal turning point in the ongoing trials.
Comment: In a 2012 study conducted by Dr. Ann McKee, a former professor of neuropathology at Harvard University, evidence of severe brain trauma was found in every single NFL footballer and boxer whom she studied. A 100 per cent rate was incontrovertible evidence, she said, that playing such sports was a danger to your health.
Players continue to fight back after years of dismissals of their symptoms, and another suit relating to the 2013 settlement was just filed in late 2015. Depression and anxiety are mentioned in many TBI assessments, as they have high comorbidity rates with brain injury, but that seemed to get ignored during the NFL court proceedings. Interestingly, this blind eye to mental health care for the TBI population is also being turned in hospitals and treatment centers.
Three years of data collected from 10 U.S. brain injury rehabilitation facilities shows that there is a focus on physical, speech, and occupational therapy, but psychological well-being seems to be greatly overlooked. [13] While these therapies were each given to almost every patient for four to five hours per week, only 50 percent of patients received psychotherapy or behavior intervention, and treatment was given for an average of 20 minutes per week. Even more troublesome is that 70 percent of the 2,000 individuals studied were given anti-depressant medications regardless of not receiving regular professional psychotherapy.
Fighting for Social Justice
Are our doctors at fault or do patients also need to be responsible advocates for their personal health? Is it possible that better health care requires effort from both sides? Unfortunately, not every clinician is going to understand the particularities of each complex brain injury. This is something that Dolly Deebs, a mother from New York, knows all too well. Her son spent most of his childhood hospitalized or in rehabilitation due to a malignant brain tumor that formed following a traumatic brain injury he sustained while playing outside with friends. After being told that his chances of survival were grim, she fought through years of misdiagnoses until she found appropriate help for his neurological issues.
"The status of doctors years ago was the status of a god. They were looked at that way because they saved people... but, they weren't God," her voice turning soft, "they were humans. This was the real problem — the mentalities of the doctors and patients who enabled this highest status. Questioning your doctor was disrespectful and there were many who were arrogant about their training, so people didn't want to ask. But family members of really sick patients would not give up and continued searching for answers. That's how the system changed, those people."
We need to be those people. As an informed society we must reevaluate the significant TBI problem in America and be aware of the importance of our brain health. This idea is echoed by Nicole Surizon, a clinically certified Speech-Language Pathologist who spent the bulk of her career as a rehabilitation specialist for hospitalized children with brain injury.
"Previously, there wasn't real help for children with Autism Spectrum Disorder, people didn't even fully know what it was. Now there is so much research going into understanding ASD and creating the best possible treatment plans. Funding for TBI is limited, so there needs to be more awareness of how serious of a problem it is. That's the next step to really make change."
Could brain injury amongst the general population be contributing to social disruption or America's nearly 50% divorce rate? [14] Law enforcement's displays of intense aggression? Was former Ravens running back Ray Rice dragging his wife from an elevator following a violent fight because he is a monster, or was he unable to inhibit an emotional reaction due to years of brain injuries? What about evidence of dramatic increases in psychopathology among young people in America? [15]
Brain damage does not only affect relationships with friends and loved ones, but also the ability to make rational life choices and professional decisions. There can be extreme consequences to not thinking clearly when it comes to caring for your children, signing legally binding paperwork, giving instructions that affect others' livelihood or even moving millions of dollars in business transactions. Have we really considered the ramifications of throwing huge variables like memory deficits and quickly shifting emotional states into that mix?
When the AIDS epidemic scared the world in the 1980s, awareness was spread regarding the importance of using condoms and not sharing hypodermic needles. Since useful medications didn't exist at the time, protection meant taking preventative measures. The same is true with TBI today. Since immunizations to shield your brain from repeated blows to the head do not exist, the best options involve protecting your brain as much as possible.
Speaking Up to Support Brain Awareness
Although there needs to be more awareness of the prevalence of TBI, change is occurring. Influential athletes openly discussing their thoughts on brain injury help young people make more informed decisions around the benefits and detriments of embarking in a career that could lead to lifelong brain damage. There is no fame and glory in slipping away as friends and family sadly look at the "heroic" photos of what you once were. A professional hockey player speaks of this with dramatic insight in his recent article on living with TBI and the struggle of still feeling romanced by the game.
In early-March 2016, soccer superstar Brandi Chastain announced that she will be donating her brain to Boston University for research purposes. This move follows just months after official U.S. Soccer eliminated "heading" of balls during games with children 10 and younger. [16] The university's specialized center has been well-known for finding the brain disease CTE in over 90 percent of brains donated by deceased former NFL players. [17] CTE, which is believed to be a product of repeated mild TBI, can't be seen on brain imaging and is only identifiable postmortem, similar to Alzheimer's disease.
This message is not just to make data on TBI available to the public or even to criticize the U.S. health care system's gaps, although both are important. It is intended to ask the readers to evaluate their roles in the brain health of all people and how mental wellness affects the many interactions that occur in society. Do you or someone you know have untreated cognitive or mental health issues? How do you believe that affects drivers on the road? What effect does this have on learning and using information in meaningful ways?
Could properly caring for the brain help people be more empathetic and cooperative with one another? Is it possible to go even further and consider that handling the brain with the utmost respect can encourage peaceful living? It's our opportunity and duty as intelligent creatures to recognize how to best preserve our livelihood and most important organ. Understanding our brains may be difficult, but humans love to investigate the great mysteries of our world, even the most challenging.
Knowing that friend and former bandmate Syd Barrett had been consumed by mental illness, Pink Floyd's popular song Brain Damage sings, "And if the band you're in starts playing different tunes, I'll see you on the dark side of the moon." Hiding in the darkness isn't the only option. We should encourage those with hurting brains to come out. Don't be afraid. Whenever you're ready, we'll be here waiting.
References
Unfortunately, expecting the person who has suffered a TBI to know that they have a TBI is usually very unrealistic. One of the effects of TBI is confusion, diminished analytical ability, accompanied by pressure from everyone around that "oh, you're okay, you don't need any medical care -don't be a sissy."