First Person: Gail Waitkun’s relentless quest to better understand – and beat - Traumatic Brain Injury

As a grateful recipient of a brain injury with the collateral gift of an inability to ask for help, I elevated my mindset by forging ahead with my daily life to the best of my ability. My dogs were my saving grace. They provided me with a reason to immerse myself in nature. This was healing.

My cellphone camera and love for the creative process helped me to capture a satisfying image and label it with a thought. That thought was usually someone else’s quote and helped set the tone for my day. I was intentional about this. I had to have words that would uplift me.

Science now shows that this makes a difference. The standard was for it to be a message of hope and great intention. I sensed this to be necessary. I was optimizing my outlook.

I’d post this on my social media and ‘converse’ with those who commented. This became my way of communicating with the world while keeping myself sane. It connected me in a way that enabled me to believe in being understood. It uplifted me. It was an easy goal to accomplish.

Over time this provided a social connection and brought a sense of satisfaction that, in turn, built my confidence. My confidence was not secure enough at that time to help me to speak out. I knew that unless I was able to speak in a manner that would be received by others as a true objectively measured sharing of information, I would be dismissed. I knew my emotions would get in the way of that, and I had no control over those.

I was struggling with what my reality was. So, I was quiet and failed to establish a line of communication with my doctors, who desperately tried to help me. There were many occasions where I would have preferred to have simply lounged in my quietude. But that was not in my DNA. I was the one who, when the movie did not start at the set time at the theater, I was the one who jumped up to see if those in charge were paying attention.

Engaging in general conversation could be frightening as I was aware that I had no control over what the other person might say or ask. I was also painfully aware that my ability to interact did not measure up to those before my accident. It was akin to the nerves one can experience before taking an important test that one has not studied for.

Finding answers in the immediacy of the moment could be maddening because I knew what I needed to say, but the words would not come, or if they did, they were not the right ones. It was not a satisfying experience. I struggled. I stuttered. This was something that happened throughout the day whenever engaged with another human. It also happens in other respects when tackling a task alone.

Furthermore, the stimulation that was created by something as simple as a new experience, a conversation, the environment, lights, ambient sound, even the gentle ticking of a clock, the moving shadows through the trees, and flickering blades of sharp sunlight accosting my eyes when seated in a car, all were energy-draining, distracting, and often created a debilitating sense of unease. This is often referred to as “flooding.”

Keep in mind that because we are all unique, it is difficult to determine exactly what may be the precise triggering factors for each concussed individual. Therefore, it is important to have a systemized approach to best effect meaningful change in the injured. This system has not yet been developed, adopted, or used. It does not currently exist. The medical community requires knowing these exact words and perspectives of the ones experiencing brain difficulties to help them.

With an inability to be able to be informed of the much-needed accurate information, there is a true problem in providing a solution. I often became sadly annoyed after sharing a particular problem when the person who I was telling expressed their empathy for my current state with the words:” Oh, I know just what that feels like.”

We, the ones with Traumatic Brain Injury, know that that is not true unless that person has been trapped in a concussed body and mind at one point in their lives. We can all agree that someone does not completely understand unless they have endured the journey of concussion recovery. It’s almost like we have our own language of verbal and physical expression, like “twin talk.”

We know what it was like to be “normal” and forgetful, and we know all too well that navigating the challenges of a TBI is nothing that anyone who does not have one can imagine. To hear another say they know exactly does not help at all. It’s maddening because it makes the reality of isolation that much more pronounced.

Over time, I discovered that in a low-stress environment, calmly paced conversations with softly spoken interactions could elicit from me some accurate insights and perspectives. This was not something that was likely to happen under pressure, especially in the presence of an authority figure.

The awareness of the vital importance of accuracy in the transmission of facts was always foremost in my mind.

This distracting preoccupation interfered with my ability to offer objective information, if at all. I simply could not think. Over time, this type of scenario compounded my reticence in responding and producing nothing but mumbles for those who were trying to understand.

Because of this communication challenge, on many occasions, I withdrew. This happens to many of us. There is a period of paralyzing angst in the self-realizing that we are unable to say or mean what we say. If we do speak up at that time, it may be filtered through our twisted frustration resulting in inaccurate reporting. We may then be perceived as complaining because we have a tone that sounds desperate. We have lost control of our prior abilities. Along with that, we physically appear to be absolutely fine.

These mixed messages fill an inaccurate and often misinterpreted effort to communicate. When we see the result of our attempt, we wish we had never spoken. Often shame, embarrassment, and disappointment influence our final decision to remain silent rather than juggle the conversation and suffer the triggering consequences that can last for days.

We choose to keep silent for several reasons. First, we are frightened. We can see that our abilities have changed, and we have limited control over situations we once never had to think about. We know what we need to do, but there’s no guarantee that we will be successful, and sometimes the outcome of trying is not only disappointing but embarrassing.

Therefore, we experience fear of being misunderstood, fear of ridicule, fear of being accused of being difficult or lazy, and a general fear of not being accepted or appreciated. This results in not being included in activities and conversations. Not only may we have trouble expressing ourselves, but we also have difficulty matching expressions to words and meanings emanating from others.

This executive functioning skills processing issue also can contribute to extreme misunderstandings and confusion. Our decision to remain silent may be one reason brain injuries are referred to as the “invisible injury.”

We look normal, but on the inside, we are a trainwreck. There are many who are content to leave it that way. Those who have brain injuries and those who are tired of dealing with them from the other side. Being invisible. It is much less trouble. This is not helping.

For these reasons and so much more, it is critical to have a way to help those with a brain injury to chronicle in real time what their specific problems are. Without a means to do this, to relay the proper information, barriers to effective and true communication remain erected where there we stand safely and silently behind them. This makes the possibilities for a satisfying brain recovery and an opportunity for a fulfilling life impossible.

It’s been proven by millions whose lives will never be the same as they have not received the help they need, and for this reason, they have given up hope.

Being brain injured can bring on a constant malaise with loss of control, with a malfunctioning brain wreaking havoc with so many necessary abilities in a dormant condition. The state of disappointment often insidiously manifests with a feeling of alienation and strongly influences the choice to remain invisible. We separate from the herd. It’s so much easier.

To our inability to control our thoughts, emotions, and actions, we choose to do what we are able and what is easiest. Deciding to not participate is our way of feeling that we are in control. It is not surprising to me that it was recently reported that:

A 2018 study in JAMA1 found that the risk of suicide triples in the first six months following a TBI, and it remains elevated long after that. Compared to those who have not had a head injury, people who have experienced a TBI are at a 75% increased risk for suicide seven years after experiencing an injury.

The limited availability and existence of protocols and procedures for rapidly addressing and effectively healing brain injuries are twofold. One reason is that we, the brain injured, have a difficult time speaking up. T

his has contributed to a massive void in the collection of potentially useful data and, therefore, a situation where the medical community has had little pressure on them to change their perspectives and practices.

We look perfectly fine, and if we do not speak, we are able to pull it off. The other is that there has not been a systematic protocol of tests established across the board that will help to identify the actual problems that need to be addressed.

It’s time for those who are willing to step up and create a new dimension of healing. Brain-injured people have been marginalized and relegated to a community of “misfit toys.” We’re an easy target. We rarely speak up, and when we do, it is often in a voice fraught with emotion that elicits confused glances. This often allows people to point a finger and label us “out of control.” We often see this shared amongst the non-concussed, which further influences our wish to be alone.

So here we are. The medical community has no idea what the specific problems are in real-time, and it has not come together to apply its full arsenal of available medical know-how, as uninformed as it may be. Each practitioner seems to have their own unique perspective as to what works. I have experienced this. One medical professional who specializes in TBI seems to only offer one solution – and it does not address the rainbow of needs lying quietly within.

Our brain controls every aspect of our being, and as I have been told by many who specialize in this area: “We still don’t know everything we need to know.” What neurologists share is their specialty, not necessarily what would work best at that time for the problem at hand. I see this as a significant downfall and not serving the brain-injured community. There must be an effort made to thoroughly document the damage. This means right down to the tiniest capillary and would include ferreting out the truths from the one experiencing the problems.

I decided that it would bring me joy to help others avoid this struggle. A sense of purpose is healing too. I have decided to begin with a tool that will assist those from both sides in the “misunderstanding.” This will allow the concussed to be able to share valuable, pertinent information with those who depend on knowing. This will be a great step in helping to support more articulate and informational conversations resulting in better recovery plans and practices. The best part about this is that you don’t need to be brain injured to use it.