After my mild traumatic brain injury, I was not aware of my injury.
That is an understatement.
When I look backwards, I can see that my lack of awareness about my injury made my interactions with primary care doctor more difficult. In my speech at the Congressional Briefing in 2011, I used the phrase “unbeknownst to me“ to describe my lack of awareness about my symptoms.
In that speech for Brain Injury Awareness Day, I go on to describe that “unbeknownst to me, I had the following symptoms. I had a second grade math level, a third grade language skills level, word finding difficulties called aphasia, attention and memory issues, confusion, tremendous fatigue, and irritability. I couldn’t absorb what I was reading, and I had difficulty with social cues”.
Years later, its amazing to me that I functioned for years with those symptoms (and others).
But, I did.
Why did I have to?
That is a complex question that I still cannot completely answer.
But I want to take a stab at answering it now with years of recovery (and advocacy) under my belt.
In this post, I want to talk about my own lack of awareness of my injury as a factor.
How aware was I of my injury?
Well, I knew something was wrong.
But I thought of myself as an articulate person because I was an articulate person before my injury.
If I had any expectation at all in my mind, my expectation was that whatever was wrong with me was temporary and would go away.
Plus, I loved my life as it was.
I expected it to continue, as it was.
That is,if I had given it any thought.
I did not give it any thought.
I went to the doctor because I had headaches.
Frankly, I don’t think I would have gone to the doctor on my own.
Luckily for me, my colleagues at work said, I should go to the doctor because I was in a car accident.
They said to me that I had never complained of headaches before and that my headaches could be related to the car accident.
That was logic I did not have on my own.
That might tell you something right there, but it did not register for me.
And I was not the type of person who was going to let a headache get in the way of me living my life!
Looking backwards, I did not have awareness of all that had befallen me.
And unfortunately, neither did those around me.
One of my colleagues recommended a doctor to go to.
My colleague had fractured his skull in a bike accident and his doctor had helped him with his concussion recovery.
I made an appointment to see his doctor.
I went to see the doctor because my colleagues were telling me I should.
I didn’t have a “go-to” primary care doctor who knew me. I didn’t need to have one.
What that meant was that my new doctor did not know me pre-injury.
If I had been aware of my injury, the outcome of going to a primary care doctor might have been completely different. We will never know.
But I wasn’t.
Other than the one symptom — the headaches — I am not sure that I had anything else to tell my new doctor about why I came to see him.
From his point of view, I am sure that I looked fine.
Let me repeat that.
I looked fine.
Looking backward, I can see what a mismatch in terms of expectations and knowledge that my first encounter with my new primary care doctor was.
Looking backwards, I don’t know how aware my doctor was of possible other symptoms of mild traumatic brain injury/concussion at the time.
I was only presenting to him (telling him) that I had one symptom.
That one symptom was all I knew I had at the time.
It was also all I was telling my colleagues because it was all I knew.
The other part of the knowledge mismatch was that I thought my new doctor knew all about what to do for a concussion because he had helped my colleague.
I did not know what a concussion was. I don’t think I even knew the word then.
But, the most important thing about that is that I thought he did.
My new primary care doctor appropriately told me to proceed with caution which I did.
That meant that I did not start playing volleyball on the sand courts by the Potomac river at the bottom of the Mall (the park where all the Monuments are) in Washington D.C. that week, even though I had been looking forward to the sand volleyball season to start for months.
I don’t remember what he told me about my headaches, but I think he told me to take aspirin, when needed.
I went back to work and I went back to my life.
I believed that I was taking appropriate precaution and that everything would be fine.
Boy, was I wrong.
Looking backwards, I can see that lack of awareness is often a part of the injury, in my case and for many of the people I meet with the injury.
From my vantage point, lack of awareness can stand squarely in the way of getting to appropriate care.