Yes, we’re coming on six years, and my injury is as invisible to others as ever. And yes, I question myself just as much as I ever have. Are the things going on in my head each day caused solely by the post-concussion syndrome (PCS) after my TBI, or is that just a convenient excuse I use? You see, my injury is as invisible to me as it is to everyone else. When I look in the mirror, I see a decent looking man whose beard is completely grey these days. But, aside from a few extra pounds around my mid-section, I look as healthy as most everyone else I see.
So why do I still struggle so very much some days? Why can’t I adapt more quickly to this ever-changing world? Why do my emotions continue to overwhelm me? Why do I still forget most of the words from conversations and only remember the emotions? Why aren’t I back to a much better version of me yet?
Struggles with Chaos
Chaos continues to be my nemesis. More than a single conversation in a room leaves me unable to grasp more than pieces of the conversation I’m trying to listen to. Background noises, each and every one, fill my head as my brain tries to sort out what I’m trying to hear from everything I’m trying not to hear. If I don’t have a quiet space to work in, I can’t write because everything I hear gets processed. Soon, my brain is so distracted that I can’t focus enough on what I’m trying to write. Even now, as our little vacuum bot does his morning cleaning, I can’t avoid hearing the light drone of its motor, the change in pitch as it moves from floor to rug, and every time it bumps into a piece of furniture and tries to correct its course. Each of these sounds is processed, and each time I have to find my way back to what I’m doing.
But I don’t live on an island. I live in a busy house with three other people and three pets, and everyone needs to be able to live their lives without having to worry about what’s going on in my head. So, occasional chaos is an unavoidable part of my days.
Struggles with Conversations
Those of you who visit my blog regularly know that I was married this year to the love of my life, Marcie. Marriage means a lot of things. It means I found someone who loves me enough to commit to sharing her life with me – even though she was painfully aware of my many TBI-related struggles. It means I have a support system that is always there. And as with all married couples, it also means occasional difficult conversations.
When we are trying to work something out, a recurring theme is me not remembering what was just said a moment ago, and only remembering the emotion it brought up. I then lack the context to fully grasp what’s said next. Instead, I’m overwhelmed with the emotion brought forward by the statement I can no longer remember and then, all too often, I’m applying the emotion to what she’s currently saying. This is a struggle for both of us. She’s a very smart woman… she’s a PhD who coaches other aspiring PhD’s to help them succeed. Words are her thing. She remembers virtually all of what was said and then she is left struggling to understand the emotions I exhibit that are completely out of context all because I don’t remember the words we just said.
Most of the time, I will eventually recognize what’s happening and offer a heartfelt apology with my assurance I’m trying to get better at not allowing this to happen. While she accepts my apologies, I do understand that my behaviors have hurt her feelings. I wish I were better at these conversations.
Struggles with Emotions
Emotional lability is another huge struggle for me since my injury. This is the tendency to both feel stronger emotions than a situation calls for and to express emotions more intensely than we’re actually feeling them. There will be times when Marcie asks me why I’m so animated when trying to express myself, and in the moment, this can escalate the behavior. However, thinking about it afterwards, even if I don’t remember all the words we said, I can remember my hands and arms waving all about, and perhaps an overly wounded look on my face.
I’m not at all proud of these moments. She deserves better. But the complication here is that emotional lability isn’t a voluntary behavior, it’s related to the damaged areas of our brains that control emotions. But this doesn’t mean it sits right with me. I desperately need to learn to control this behavior.
What’s the Answer Here?
First and foremost, I deeply understand that I have deficiencies that I need to improve. Yes, I’m positive, happy, and fun to be around (at least I think I am…) most of the time; but the biggest things I’m talking about here is how I handle chaos, stress, and anxiety. Simply put, the answer is not very well. But how do we address emotional lability?
There are some cognitive techniques that are recommended for those with emotional lability that include relaxation and breathing exercises to reduce tension and stress. But I don’t always know it’s happening or recognize my behavior as possibly needing an intervention. And how would I respond if, in a difficult conversation, Marcie was to point out that perhaps I needed to relax and breathe for a few minutes as a reset? I don’t know, but I think it’s worth a try.
And what about chaos? Especially at the end of a long and hectic workday, I’m especially susceptible to being overwhelmed by chaos. We live in a small house, so my quiet space options are limited to the bedroom or outside. Taking a short walk or just sitting out in a lawn chair is also an option. I definitely need to be more proactive on taking a few minutes to decompress when needed.
Memory issues are the hard one. No simple fix is available – I’m stuck with this one. That said, I’ve seen definite improvement, just not as much as I would like. I eat in a mostly Mediterranean way, I take supplements for memory, and I meditate. These are helping the healing process along, but from the amount of healing I’ve experienced over these last six years, it’s becoming clear that I’m unlikely to ever reach my pre-injury memory performance level.
But these are all just band aids, I want to actually make things better. All my desires and all my efforts seem to bring about so little change. Am I just not trying hard enough?
Self-Doubts
Self-doubts plague me each day of my life. Yes, I know that these are all common symptoms of brain injuries, and I know these things surfaced after my injury. But why can’t I just change these things by setting an intention and keeping up on it? I’m a very capable person, and I’ve grown past so many of my initial struggles, why can’t I fix these things as well? And the worst question of all that plagues me is, are these really because of my injury or am I just using that as a rather lame excuse to not fix what’s wrong? Is it because I’m unable to fix these things or just that I’m unwilling? My mind is way too good at playing these games, quickly reinforcing my imposter syndrome feelings.
Closing Thoughts
We know that brain injury survivors have struggles that are real. Yet, I have all these doubts and accusations running through my head, and I’m reasonably sure that many other survivors experience similar struggles and similar doubts.
I don’t even know how to close this post, except to give you the advice I desperately need to take to heart…
- Be as patient as you can with yourself, your struggles are real.
- Communicate your struggles as clearly as you can to those around you.
- Use band aids when appropriate… take a break, go for a walk, do breathing exercises, whatever works best for you.
- See #1.
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