Self Awareness, Insight, and Identity After Traumatic Brain Injury

By Tom Hunter

Who am I now?

If asked for advice for TBI or severe TBI sufferers, I would suffer from having too large a set of possibilities. There are more symptoms and hazard zones for TBI recovery than I had imagined. Similarly, there are lots of practical tools and lifehack solutions such as having more patience, and doing more planning, and what I’d describe as better anticipation along with environmental controls. I have not chosen to suggest those, or the many others, which I will describe with scare quotes “aphasia tactics,” “conflict avoidance,” or “the bodyguard.” None of these are scary, nor are they actual professional jargon, they are just the terms I used to describe my own recovery tools in my notes over time

Anyhow, my primary advice is to trust the people who love you, and who are trustworthy, and who know you best. If you lack such persons, seek a counselor, therapist, or doc with experience in helping people who have undergone large changes in identity or in family structure. I suggest that because post-TBI my biggest adaptive and rehabilitative challenge has been believing and adapting to the significant changes in my own internal identity. Similarly, there are changes through some exaggerated aspects of my pre-injury personality.

I was mature and nearly 50 at the time of my injury. I had plenty of education, experience in a couple professional career arcs, and I had a job position which had room, even at that relatively late period in life, for career and personal professional growth. Generally I was somewhat quiet among people whom I did not know. As a person who could get off-track on complex tasks, I was practiced at avoiding distraction when necessary. My anger socially was not explosive or disruptive generally, I think it would more likely be described as becoming tense or stressed.

I was not at all prepared for what I now call post-TBI re-adolescence.

When my longtime friend David asked me, 12 weeks after my severe TBI, “do you notice any changes in yourself, like in your personality or behavior?” my response was nearly instantaneous. “No, I’m exactly the same. I’m just worse at some stuff.” Sure, I might have perceptible “surface” issues with aphasia, emotional outburst, and acquisition of new information, but I was on a curve back to being the very same person. I thought that my new impulses to make off-topic comments, or to answer inquiries with unhelpful sarcasm, or my much increased difficulty with minor trespasses of behavior by others, were mask-able, temporary, and not of the essence of my core personality. I was the same, and I intended to prove it in short time.

It took a longer time– in fact a few years. And instead of proving I was the same, I had to accept that I am not quite the same, no matter how much I had believed that I was. And no matter how much I wish for it now.

I would advise a person in recovery that all of the small surface differences or issues, they go farther and deeper than you yourself perceive, especially early in the recovery curve. A crucial aspect of how one’s personality and overall persona are perceived and judged by the rest of the world involves the consistency and reliability of a person’s behavior. That consistency becomes predictability for those who love you, and who need to trust you, and who want to rely on you. But the net effect of the small changes you may have acquired in your interactions and behavior have actually changed who you are, both in function and in manner, and you might just not realize it yet. Cumulatively, they are big.

As a patient in recovery, I lacked perceptual insight regarding my behavioral symptoms, especially in the first two years. I did feel just like the old me, with just some declining difficulties doing identifiable cognitive or language related things. I would advise people “in my shoes” to listen with care to any information, comment, criticism or advice they can obtain from their family, loved ones, and friends. They will know, and they may not want to tell you, for fear of discouraging you.

The information that is received from family, friends, and carers may not assist you in returning to your pre-injury self. It may still be necessary to accept who you are now, and what you can do now, and to be who you can be now. For me, I am closer to the old me, but no, I am not the same. My own awareness of a (permanent?) distinction between my pre-injury and post-injury selves could be very jarring. And it can be painful. During one of the many times of difficulty and conflict during my re-adolescence, my spouse of over 15 years finally expressed part of her own frustration very simply: “you are not the person I married.” This was not in anger, it was sad but it is true, I think. She has very good judgment and also is an actual professional in working with TBI patients. After years working hard to prove to the world I was the same, or could become the same, I believe her.

---

This article originally appeared in Volume 17, Issue 1 of THE Challenge! published in 2023.