February 25, 2023

What is the “Awareness Month” that is most meaningful to you?

Maybe an odd question, but my guess, it would be awareness of a condition that affects you personally?

March is National Traumatic Brain Injury Awareness Month. Professionally, this month became important to me when I started working with the Brain Injury Alliance of Nebraska in the summer of 2016. Personally, I could have used the awareness of Traumatic Brain Injury (TBI) 17 years earlier when my youngest son, on his 6^th birthday, fell from the top of a ladder going onto a slide. Landing on a concrete slab, he was knocked unconscious. EMTs were called, Life Flight arrived, and took my son, accompanied by his father, to the hospital. Twenty years later, my son, shocked both his parents, with the detailed description of his injury in a poem written for one of his Masters’ classes.

Along with many other “Journeys of Hope” my son’s writing is posted on biane.org. When the blog was added to the Brain Injury Alliance of Nebraska website, the section was called, “Survivors’ Stories.” Just one of the many things I have learned from the people living after brain injury; some really don’t like to be called, “Survivors.” A title that suggests, “one and done”, rather than the ongoing effects, for months, or the rest of people’s lives, who call needing support, resources, and most of all reassurance that they aren’t “crazy.”

Like my son, many of the individuals living after brain injury, don’t feel capable of expressing the change in their emotions or cognitive abilities. The fear of not being understood in trying to explain the ongoing, invisible, symptoms that often include depression, anxiety, and fatigue. The words, thoughts, and activities, that used to come easy, have become an ongoing internal battle but no one seems to believe them. When they find a community that does understand and appreciates the challenges of living after brain injury, that is when their journey of hope begins.

Maybe I should share the large numbers indicated in studies, and statistics that demonstrate the global challenge of TBI, but that is data. For me, it is easier to relate to the Brain Injury Alliance of Nebraska’s motto, “A brain injury can happen to anyone, anywhere, at any time.” What is relevant in the Centers for Disease Control (CDC) reports found at: https://www.cdc.gov/TraumaticBrainInjury/data/index.html, “These estimates do not include the many TBIs that are only treated in the emergency department, primary care, urgent care, or those that go untreated.”

So, you are aware, a TBI is a “bump, blow, or hit to the head; or a penetrating head injury that disrupts normal function of the brain.” We have all heard the frequent media reports about the injuries suffered in sports, vehicle accidents, falls, and assaults, that includes domestic violence, and what used to be called, “Shaken Baby Syndrome” now referred to as, “Abusive Head Trauma.”

What is missing in all this awareness is that TBIs are only one kind of injury to the brain. Either we need to change the month to, “National Brain Injury Awareness Month” or assign another month to increase awareness of Acquired Brain Injury that also affects cognition, including anoxia (lack of oxygen), aneurysms, infections (now including COVID) stroke, cancer…. Can you think of other causes?

Have you begun to consider someone you know, maybe even yourself, that has suffered a brain injury? Find that if people are given a moment to consider, they know someone who has personal experience.

For the general population, awareness is important because TBIs have a large impact (pun intended). No one wants to hear that they, or a loved one, has a brain injury. It is understandable to feel great relief when the practitioner’s diagnosis includes the descriptions of “mild injury” and prognosis of “you will be fine.”

Of all the diagnosed and undiagnosed, treated, and untreated brain injuries, most common is referred to as a, “Mild TBI.” Which simply indicates in the medical field that the person didn’t lose consciousness or was disorientated for less than 30 minutes at the time of injury.

Consider the synonyms for the word, “Mild” including, “Slight, Unimportant, Insignificant, Bland, Gentle, Kind, Easy-going…” This tends to be the first unintentional insult for people suffering a TBI. Due to a lack of awareness of the 10-20% of people that suffer a TBI that continue to have significant, long-lasting symptoms, called Post-Concussion Syndrome (PCS). Often misdiagnosed as a mental illness, PCS alters a persons’ cognition, physical condition, and sense of well-being. In other words, not insignificant or kind.

Be aware, whether the diagnosis is mild, moderate, or severe (which means the person is in a coma) these individuals often appear to be fully healed after months or years of treatment. “You look fine” is the second most common insult. Due to the ongoing invisible symptoms resulting from injury, their past, present, and future self has become significantly changed. They feel anything but fine.

There is nothing “fine” about a brain injury except what individuals, family, and friends, choose to do with the awareness. Sharing their experiences is creating communities of support, access to innovative, therapeutic options, and most important, educating and advocating for the ever-growing numbers of people living after a brain injury.

Of course, personally, and professionally, I’m biased about increasing awareness because a lot of us can relate to the trauma of getting a scary sounding diagnosis, like “Brain Injury.” We also hear about the miracles of modern medicine. What we all need to be more aware of in March, and throughout the year, are the accommodations needed to help put lives back together after brain injury. What I have learned from people on their personal journeys, and those that support them, is the accommodations that they need can be helpful for everyone’s brain to become more aware of the passion and purpose of advocacy. To learn more and get connected, for yourself and others, please check out our website at: biane.org, or call the Brain Injury Alliance at 402-890-7126.