March is Brain Injury Awareness Month
Brain Injury Awareness month is sponsored by the US Congressional Brain Injury Task Force. During the month, the BIAA is encouraging those who have experienced brain injuries to share their stories with others on social media.
Most of us are not aware of brain injuries. Until 2018, I knew nothing about brain injuries, which is odd since I’d had six of them. No one ever mentioned “TBI” to me. Now that you know, you are probably nodding your head, “Ah, so that explains him!” (Hah hah!)
In a serious vein, though, I have been told that I should not even be functional, based on my injuries.
Brain Injuries Are Common
Most of us likely think of brain injuries in terms of sports or military service, but injuries occur in automobile, motorcycle and bicycle crashes, assaults including DV, falls (one of the most common causes), or items falling onto a person, and non-team activities like bicycling or running and other recreational sports activities. Brain injuries also occur from strokes, disease, oxygen deprivation, drug/chemical issues (acquired brain injuries or ABI).
An estimated 2.8 million traumatic brain injuries are reported each year; many more go unreported. 5.3 total million people have long-term disabilities (about 1 in 60 people in the U.S.). Even more suffer from ABI
My Brain Injuries
I had a 5” long skull fracture, with likely internal bleeding (pre CT/MRI days), diagnosed retroactively as a moderate TBI, plus 5 additional concussions / knockouts / mild TBI over a span of 40 years. 3 of these were bicycle crashes, with 2 breaking helmets, and other bones, another was a fall on ice.
My care was not good: I was not x-rayed until 5 days after the bike crash that broke my skull, and my only treatment was to lay in bed, at home, throwing up and confused. Today’s standard of care has progressed a bit: Now those with serious injuries will typically be hospitalized and seen by a care team of a neurologist, neuropsychologist, physical, occupational and speech therapists.
Head injuries are weird and no two are said to be a like: there’s a joke in health care that if you’ve seen one head injury, then you’ve seen one head injury. Indeed, my 4th head injury in January 1987 was a bike crash with knockout blow, broken helmet, and broken hand – seemingly less injury than a skull fracture. But this injury had effects for the rest of my life.
No one mentioned TBI to me, which boggles my mind (easy to do, sorry, bad joke). I’d never heard of TBI until 2018 – even though I’d had 6 serious head injuries.
In 2018 I stumbled onto a book about TBI and thought that looks interesting. I was not expecting to read my autobiography in the first chapter – I had no idea. Page after page described symptoms I had been experiencing. Suddenly everything in my entire life made sense – I had a very emotional response to this revelation.
A couple of weeks later, a friend introduced me to a friend of his, the late Eric Mings. Eric made a joke about brain injuries (I thought it was funny) and I said hah hah, that’s probably me! Eric asked me to explain, and I briefly summarized my head injuries, to which he responded, “I can’t believe you are standing in front of me, steady on two feet, speaking coherently”. With a few more words, Eric changed my life. Eric had a PhD in neuropsychology and knew what he was talking about.
In 2 weeks, I met with my then doctor (she’s awesome). She asked for a summary, which I sent her, and she changed the usual 15-minute appointment to 45 minutes – and this became the first time in my life I discussed these injuries with a health care provider. She retroactively diagnosed my brain injuries, based on history, symptoms and nature of the injuries, which led to a combination of medication and neuropsychology therapy, which were helpful.
There were about 16 symptoms I was dealing with, including a speech issue I never told anyone about (ugh, another bad joke) who’s only known cause is TBI or ABI. Some symptoms were physical like tinnitus, light and sound sensitivity, 5 kinds of headaches and some were mental health – anxiety, decades of sleep disorders, perseveration, rumination, emotional lability, insecurity, reduction of multi-tasking abilities, short-term memory issues, headaches when in large groups due to the “filtering” issue of TBI, etc.
For over 30 years I had a continuous massive headache-literally 24×7. This was finally treated and is no longer a problem.
I Should Not Be Functional
Per recent research, I should not be functional: “The researchers found that people who reported three or more concussions had significantly worse cognitive function; those who had four or more mild concussion episodes also showed worsened processing speed and working memory. Each additional reported concussion was linked to progressively worse cognitive function. Attention and completion of complex tasks were particularly affected. It also found that having just one moderate-to-severe concussion, or traumatic brain injury, can have a long-term impact on brain function, including memory.”
Several health care professionals told me, in the past few years, all using similar wording, that I am a “miracle” (words used by a doctor last year).
I am grateful that I was so lucky to have come through all this so well. I know of many who had less (and some with more) injury than me but have had far tougher outcomes. I am really lucky.
I still experience TBI issues but now I know what’s going on. Kim occasionally tells me “I think you are having a TBI moment”. A goal is to now catch up on life experiences that were neglected for decades.
Obviously, this impacted my career opportunities, eventually leading to earlier retirement than I desired (which happened before I obtained treatment). I had no knowledge of TBI nor treatment until 2018. No one asked me about history of head injuries, and I didn’t know to bring it up. This lack of care should not happen to anyone.
While many today will receive excellent care and be assigned a “TBI/ABI care team”, far too many patients still fall through the cracks of our health care system.
I’d like to thank the late Eric Mings, PhD, Nicole Trajano, MD, Leigha Slater, MS, MA, PhD. Also thanks to our daughter Gwen, BA, BSN, MSN, APRN, PMHNP, who let me know that having my brain get “stuck in a loop” (perseveration) for weeks was not normal. All of these people helped to get me on the right track to recovery, albeit a few decades late.
Some Brain Injury Resources
Some easy resources for learning more:
Free online e-book on TBI by a neuropsychologist: Traumatic Brain Injury (tbiguide.com)
Brain Injury Association of America | BIAA (biausa.org) (and state level organizations)
BrainLine | All About Brain Injury and PTSD
Traumatic Brain Injury Articles | CNS Brain Injury Rehab (neuroskills.com)
#BrainInjuryAwareness #BrainInjuryAwarenessMonth #MoreThanMyBrainInjury