During my youngster (sophomore) year at the Naval Academy, I became a DJ and hosted an alternative radio show with my friend Todd Krulak, the son of General Krulak. It was a great distraction to the strict military structure and constant pressures that made up our typical hectic day. This excursion allowed me to embrace my passion for music and became my creative outlet. Through the experience, I was introduced to many new defining artists from the late 1980s and early 1990s, and it was one of those groups, Toad the Wet Sprocket (TTWS), who unexpectedly caught my ear.
A few months after discovering TTWS, I suffered my first traumatic brain injury while competing in a rugby match. I still don't remember much from the impact except that I was running down the pitch, about to score, when I was tackled from behind, landing headfirst into the goal post. I woke up on the ground with my coach and teammates standing over me.
The coaches popped my separated shoulder back into place and told me I was OK. I finished the game, not remembering it or most of the weekend. Over the next few weeks, I experienced headaches, dizziness, ringing in my ears, sensitivity to light, brain fog, insomnia, and my grades also took a nosedive.
It then went away, or so I thought.
Understanding the Depth of Traumatic Brain Injury
It wasn't until I left the Naval Academy that Toad the Wet Sprockets fourth critically acclaimed album Dulcinea was released, and they had gained wider popularity and a steady following. Dulcinea is a departure from TTWS's earlier work and ironically told the story about the sharp contrast between the way things are in our lives and how we tend to perceive them. Outside of the more popular hits was a song called "Crowing." Although I enjoyed its melody, I struggled to understand the more profound and complex message for years, especially the phrase Crowing for Repair.
When I first started playing football, a headache was called a 'headache.' And now it's called 'a concussion.' Junior Seau
That comprehension gradually emerged after my fifth TBI, which I suffered over a five year period along with other traumatic events. The changes were subtle to start and gradually grew worse over time. I experienced memory loss, apathy, a decline in cognitive functioning, sleep deprivation, weight gain, irritability, and growing concentration issues. I began to understand that something was permanently changing, and I didn't know why. I was no longer able to think quickly on my feet and it felt like my mind was often somewhere else. This was when it began to adversely impact my relationship with family, friends, and co-workers, so I began going to my (civilian) doctor for help.
It is a terrifying experience, to say the least. You realize something is severely amiss with you, you are not yourself anymore, you feel like you are losing your mind, and it keeps getting worse. Yet no one believes you, because it is an invisible injury.
There is also a tremendous variability between the symptoms in one TBI victim and another. I felt a great deal of shame admitting to these changes in myself. So, if you are like me, you end up masking or hiding the symptoms and not talking about it because of its stigma in society. You are in essence a walking wounded with an invisible injury.
I saw firsthand how my peers and business leaders at my Fortune 50 employer treated and belittled others who had depression, migraines, anxiety, or ADD. I was afraid to let my secret out for fear of being fired, not advancing, or being ridiculed. I had all of those issues as well as many more.
To make matters worse, my doctors told me that everything looked normal, and it was just in my head.
But, I knew it was not, so I kept searching for answers.
Discovering That TBI is a Process and Not Static Injury
I found over time that the invisible injury kept driving me further and further away from my self-being and from those who desperately want to love and help me. I longed for normalcy as my mind was re-wired from my injuries.
The injury causes significant issues with filtering incoming information and my ability to process it. The struggle to read others' emotions leads to despair and withdrawal feelings. Social recognition and empathy are impacted as I struggle with comprehending what I am saying or doing along with my outward expressions. For years, I've been told at work that I am impossible to read and show zero emotions on the outside.
It turns out, there is a very good reason. I feel completely numb on the inside. This results in hindering social connections, apathy, and my inability to cultivate and maintain robust relationships in my career, friendships, and personal connections.
The CDC reports that despite initial hospitalization and inpatient rehabilitation services, about 50% of people with TBI will experience a further decline in their daily lives within five years of their injury and a decrease in life expectancy of nine years. Further, veterans with a history of traumatic brain injuries — versus none — are at a much greater risk of considering suicide. I can understand why.
It is vital to comprehend that a TBI is a process and not a static injury. Additionally, the Report to Congress on Traumatic Brain Injury also reveals that approximately one-third of people with mild TBI also have PTSD.
Part of the issue with treating TBIs and post-concussion syndrome is that similar impacts to the head may result in drastically different outcomes in different people. The prolonged symptoms in TBI survivors represent functional and structural damage — both physical and mental. The simple truth is that moderate to Severe Traumatic Brain Injury, like I sustained, is a lifelong condition, especially if compounded by repeat head trauma and secondary injuries like PTSD and chronic pain. Experts are also now finding mTBI can also cause long-term repercussions.
Most doctor's take the easy path and provide a pharmacological intervention strategy that only masks the underlying issues. Many victims, like myself, stop taking them, because of their severe side effects and the fact that they make other aspects of our TBIs and PTSD worse, not better.
"Unfortunately, you are in a no man's land…you have dysfunction, but not dysfunction that is "bad enough."" a prominent functional neurologist and brain injury expert recently told me. My answer back to him was that he should step in my shoes because the "bad enough" injuries have destroyed my life. His response, "I'm not saying those injuries aren't terrible. I'm saying the system is broken."
That statement underscores my entire patient journey up until this very day.
Traumatic Brain Injury Diagnosis is Subjective and Highly Flawed
The functional neurologist's comments highlight what the healthcare system doesn't want you to know. It is completely broken when it comes to understanding and treating TBIs and its often associated polytrauma.
The "so-called TBI experts" and the VA point to EEG, CT, MRI, and Neuropsychological exams to indicate the extent of the TBI impact.
However, according to the National Institute of Health, "the current widely used methods of diagnosing TBI are far from ideal, as they can produce both false positive and false negative diagnoses."
The Family Caregiver Alliance goes even further, "It is difficult to predict how well someone who has had a brain injury will recover, partly because there is no test a doctor can give that can reliably predict deficits and recovery."
Let's just take a neuropsychological test as a prime example. It is very challenging to do a neuropsych on someone who was high functioning before their injury. It is also very unusual for a baseline neuropsych to exist prior to the injury for comparable purposes. So, the tests might come back with "average" or slightly below average results, which look like the person is not impaired. The reality is they would have tested well above average before the injury, so for that person there is a significant drop in cognitive functioning.
The simple truth, based on my extensive research, is that all these tests are flawed in correctly diagnosing a TBI as evidenced below:
According to Neuropsychologia, "Although many individuals with traumatic brain injury (TBI) perform well on standard neuropsychological tests, they may exhibit marked functional difficulties."
According to the American Society of Neuroradiology (ASNR), "a CT is much more limited in its ability to detect the widespread microscopic injury to axons (nerve fibers) which leads to many of the long term problems experienced by TBI patients; it is not unusual for the CT scan to be entirely normal in a patient with TBI. In fact, the CT scan is typically normal in patients with milder TBI, including concussion."
According to the American Society of Neuroradiology (ASNR), "because microscopic injury to the brain may be a cause of problems, even MRI may not be able to detect any abnormality in a patient with TBI. Even long after the injury."
According to Dr. David Brody, "In 2008 and 2009, researchers performed diffusion tensor imaging on 63 men who had recently sustained mild traumatic brain injuries from blasts; all but one had normal results on a standard MRI."
On July 8th, 2019, according to Mark D. Allen Ph.D., Johns Hopkins University, with post-doctoral training in Cognitive Neuroscience and Functional Neuroimaging at the University of Washington, "a MRI usually cannot be used to detect post-concussion syndrome. A regular MRI detects structural damage to the brain, but PCS is not caused by structural damage. Because of this, many individuals with PCS are told they're fine and that the symptoms are all in their head — due to normal MRI results. As we know now, that's simply untrue."
According to Robert W. Thatcher, Ph.D., "the standard or "routine EEG" and "conventional MRI" are essentially useless in the detection of TBI."
Dr. Chrisanne Gordon, who once worked for the VA and is the author of Turn the Lights On, stated in 2018, "We now know the CT scan is not very effective for observing brain injuries. While the MRI provides an even greater brain tissue detail than a CT scan, it still isn't perfect. Unfortunately, neither of these sophisticated methods were able to diagnose what happened to me. Neither a CT scan nor a MRI will provide physicians with the information they need to correctly diagnose TBI injury."
In my case, the VA found evidence of service-connected TBIs, but gave me 0% disability for it, because it didn't properly show up on these tests. They want to treat me for depression, but not the underlying causes. For me, the depression didn't exist until nine years after I had the TBIs and other PTSD trauma.
It doesn't just go away.
As a result, I find my mind is always somewhere else. I am alone in my misery dealing with my personal inner hell and crowing for repair.
Lack of Proper TBI Diagnoses Leads to Improper Treatment
What makes your life even crueler is that the military, VA and civilian doctors keep mistreating your health because they rely on the flawed tests which leads to incorrect diagnoses and a siloed approach. Research doctor Jeffrey Greenberg, Ph.D., an expert on TBIs, likens what is occurring in the VA and other clinics serving patients like me, "if all you have is a hammer, everything looks like a nail."
I feel like I am in a "no man's land."
It is a well-known fact that TBI has been largely overlooked as a significant health concern until recently. Many, if not most, patients (like myself) have been misdiagnosed for years (in my case, decades), resulting in improper or non-existent treatment and rehabilitation. I believe that is why so many turn to self-medication, whether be it drugs, alcohol, or caffeine. Anything to restart the damaged brain and make you feel normal again-even if its only for a few minutes.
According to the VA website, "when TBI is associated with a significant secondary injury or with mental health conditions (post-traumatic stress, depression, anxiety, substance use) the resulting "polytrauma" can have devastating effects that compound those seen in TBI alone."
From my direct experience, the VA system is completely in turmoil. There are very few specialized facilities, even in the VA, that understand how to recognize TBIs, their prolonged effects, and how to implement a proper and comprehensive system of care. It is a similar situation in the civilian health system where I was seen by neurologists, mental health providers, and various physicians. Also, I have seen first-hand that the VA tries to minimize the TBI, post-concussion syndrome (PCS) and polytrauma diagnosis.
Most patients are treated with mental health illnesses and a rotating cocktail of psychotropic prescription drugs, instead of being treated with a chronic illness and their accompanying injuries. This is likely because it is much less expensive approach than to put in a holistic system of care. The long-term impairments and disabilities associated with TBI are grave and the full human cost is incalculable. As a result, millions of civilians and military veterans who have suffered TBI and polytrauma rarely if ever receive the rehabilitation they desperately need.
Dr. Peter Breggin, a renown psychiatrist, testified before the Veterans Affairs Committee of the U.S. House of Representatives where he stated, "If TBI and PTSD remain inadequately treated over a period of months or years, both are likely to cause similar clinical symptoms of cognitive impairment, apathy, or indifference, social withdrawal, fatigue, depression, and suicidality, emotional instability or liability, and a general limitation on the quality of life."
The lack of any reliable TBI protocol or even a firm understanding of how the injury interacts with the symptoms automatically creates a feeling of being outside the system and no longer belonging to society. Searching for years, often fruitlessly, for answers, especially if you're doing so mostly on your own as I have done.
It only perpetuates both the feeling of being alone in your anguish and the feeling of burdening others — physicians and mental health providers, as well as family and friends. This of course leads to depression, suicide, job loss, divorce, and homelessness.
Crowing for Repair Because of the Struggle Brought On by TBI and Its Invisible Injuries
Traumatic brain injuries from combat, sports, falls, violence and motor vehicle accidents are real and misunderstood. Each year, an estimated 2.5 million people in the U.S. alone sustain a traumatic brain injury (TBI), but the actual total incidence is unknown. According to the CDC, there are currently over 5.3 million people in the U.S. who suffer from long-term impacts of TBI.
For those who suffer, the after-effects are difficult to explain to those who question their legitimacy. The fact that these injuries are invisible makes it is hard for non-sufferers to understand their impact on the daily life of those, like me, who have them. Doctor's denying their legitimacy only adds kerosene on an already internal raging fire.
These invisible wounds have a direct impact on our emotional intelligence (EQ). Similar to the story told in Toad the Wet Sprocket album Dulcinea, how others perceive us is often quite different from how we see ourselves. Our self-awareness is often shattered by memory loss, numbness, anxiety, depression, loss of cognitive functioning, self-medication, and sleep deprivation.
Through EQ we are made aware of the changes — small and large — that perpetually change in ourselves and those around us. It's recognizing and responding to them that allows for personal and relationship growth.
Suppose we are unable to make these connections. In that case, it can have significant negative consequences on our ability to experience intimacy, friendship, and our genuine concern for chivalric ideals like the character in the Toad the Wet Sprocket Song "Crowing."
Without proper protocols, training, and rehabilitation services, TBI-related injuries will remain misdiagnosed and improperly treated. That is my purpose for writing this article. To bring more awareness through a first-hand account of the flawed system.
It is vital to understand that the issues people face with TBI are lasting. They require long-term solutions to help millions, like me, who are crowing for repair. They require a holistic approach to care instead of the siloed world of medical protocols that exist today.
Protocols Mean No One Has to Practice Critical Thinking.
This story is a very personal one and is decades in the making. It is a very difficult one for me to tell and I am hoping it will create positive impact.
If you are facing Polytrauma, PCS, or Traumatic Brain Injury, here are some organizations I found through my personal research and outreach that may help:
- Given an Hour
- Brain Trauma Foundation
- One Mind
- Resurrecting Lives Foundation
- Kessler Foundation
- Brain Injury Association of America
- Family Caregiver Alliance
- The NIH — Evaluation Criteria for military TBI disability scoring
- National Disability Rights Network Protection and Advocacy for Individuals with Disabilities
- Brain Injury Association of America
- Brainline
- Warrior Angels Foundation
I also wrote about overcoming shameflammation, which is critical for emotional regulation.
Thank you for taking the time to engage with my perspectives. May your journey be filled with joy, growth, and fulfillment.
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