3 Lessons Learned from 10 Years with a TBI

This week marks the 10-year anniversary of my traumatic brain injury. As the anniversary approaches, I’ve been reflecting on this past decade, trying to decide how I feel about it all. Honestly, it’s a mixed bag. There is anger, grief, pride, and gratitude in the mix. When I feel into my body, there’s nothing, a numbness, which is my body’s way of saying I don’t want to feel and process those emotions right now, and that’s okay. Don’t worry, I will do so when ready. While those emotions are waiting, here are three key lessons that a decade of living with a traumatic brain injury and its aftermath have taught me, and just might be useful to you, too.

You can’t “go back”

A brain injured person, or any person for that matter, can’t “go back” to who and how they used to be after a life-altering event. A brain injury changes you on all levels. Is it possible to resume aspects of your life that you had pre-injury? Yes, of course, though what those are and how you do them might be different than before, either temporarily or the remainder of your life.

Believe me, in the early months and years following my TBI, all I wanted was “to go back to normal.” Ten years later, I can say that I cannot and could never go back. I cannot turn back the clock or undo the events that occurred. They happened. There are two choices from which I can choose and have chosen at any given time: stay as I am or move forward in some way. Moving forward, as I’ve mentioned in previous posts, looks different to every person at any given time. This could include treatment of some kind, doing the inner work of processing emotions like denial, anger, grief, etc., changing jobs or applying for disability, or simply doing your best to make the most of and even enjoy life in your new normal. My new normal happens to be a continually moving target, so I’ve learned to be more flexible, even if at times resistant to being so. I’m not saying any of this is easy or quick: quite the opposite. Remember, it took years for me to learn this. There’s a reason the windshield is many times larger than the rear view mirror. In which direction are you looking and wanting to travel: forward or back?

Take responsibility for what you can control (spoiler alert, sometimes this is next to nothing)

Recently, one of my peers in the weekly brain injury support group I attend talked about taking responsibility. Go figure, I can’t remember exactly what they said about it (face palm), but it struck a chord, nonetheless. I’m admittedly a recovering control freak. Afterall, the events that caused my life-changing injuries were completely out of my control (read my book for the whole story). I internalized the idea that if I don’t have control, then I’m not safe. It’s taken years and a lot of therapy and inner work to start to let go of at least some of the things I can’t control. It’s a process and a practice, not a “perfect.” I still freak out from time to time, as my husband can attest, but I have developed greater awareness of these moments and better ability to discern where to put my anxious energy. Granted, anxiety is one of the most common emotional challenges after a traumatic brain injury, so it’s not just me, but I have learned tools thanks to my therapists, Yoga philosophy and practice, and organizations like LoveYourBrain to help manage it.

In the book, Resilience: The Science of Mastering Life’s Greatest Challenges by Steven M. Southwick, Dennis S. Charney, and Jonathan M. DePierro, the authors discuss what they consider the only three things you can control: your thoughts, actions, and level of effort. I will amend this to say that most healthy individuals can control their thoughts and actions. A brain injured person may not have the ability to control these, let alone all the time, because of the brain damage, yet it’s important to understand the difference between using this as a reason versus an excuse (credit to another one of my peeps in the brain injury support group for bringing up this topic). I, for example, cannot always regulate my emotions. Emotional dysregulation is normal post-TBI. It’s worst when I’m stressed and/or really tired. In instances when I can’t always control my emotions, which are tied to both my thoughts and actions, I focus on taking responsibility for my level of effort to process what I’m feeling and communicate it as needed. My brain injury causes emotional dysregulation (the reason), but I take responsibility for learning and using tools to help myself, rather than not learning or implementing any techniques that could help me, blowing up at someone else, and then blaming it all my brain injury (this time the excuse). Another example: some folks with TBI have involuntary spastic movements. While they can’t control these movements, they can work to control their self-talk about it and their level of effort to accept and work with this aspect of their injury.

Here’s a different twist on this. Just the other day a friend shared a post on Facebook from Brian with @RoomToThrive. While their page is not about brain injury, this post really resonated with me and it’s worth sharing here, regarding the common saying, “You can’t always control what happens to you, but you can control how you respond.”

The post reads:

While this may be true in some cases, there are many experiences where we have little or no control over how we respond. You can’t always control how you respond…

  • Because you’re a human with an autonomic nervous system.
  • Because your autonomic nervous system can respond without your direct control.
  • Because the ability to “control how you respond: requires a level of safety that may not be present.
  • Because your nervous system prioritizes survival over making deliberate choices.
  • And your nervous system does its best to help you survive when things are out of your control.
  • And shaming you for processes outside of your control is dehumanizing.
  • And there’s no shame in being a human with an autonomic nervous system.
  • And it’s okay to reject misguided toxic positivity that ignores your humanity.
  • When we tell folks to control processes that are outside of their control, we are ensuring failure, inviting shame, and justifying blame.

Insisting that “you can control how you respond,” overlooks basic survival biology and often ignores the conditions that led to the autonomic survival response. While we can’t opt out of living with an autonomic nervous system, we can do our part to create safer and more supportive contexts that enhance our ability to respond.

The above post honestly made me breathe a sigh of relief, especially knowing that I have diagnosed autonomic dysfunction (dysautonomia) on top of a TBI, and understanding that my nervous system just tries to keep me safe, even if it’s by going overboard in its reaction at times. I tend to shame myself when I have my freak out moments. Do you do this, too?

Ultimately, you and I cannot control what other people say, do, or think. While this can at times be the most challenging and frustrating thing about life with a brain injury and being human in general, it’s actually a relief to remember that there are only up to three things I can control, so I don’t have to waste my extremely limited energy on trying to control things and people outside the bubble of Me. Thank goodness only three things and not 1000! Remember, you and I can only do our best with the tools we have, and if we remember to use them, in the moment. Be gentle with yourself and give yourself and others grace (especially preaching to myself here).

Advocate, advocate, advocate

It’s hard enough living with a traumatic brain injury, let alone its domino effect (for me) of post-concussive syndrome, depression, PTSD, anxiety, sleep issues, pituitary damage, chronic fatigue syndrome, dysautonomia/POTS, and craniocervical instability. Then there are the memory, concentration, focus, and processing issues, to name a few. Each of my diagnoses has its own list of symptoms that aren’t just on paper, but felt and lived every day. Living with invisible disabilities can be extremely isolating and lonely. Sure, I “look fine,” but hasn’t everyone heard the phrase, “don’t judge a book by its cover?” There have been and still are days, months or even years where I have most definitely not been fine. This shit is hard.

People, even doctors, don’t always believe that some of my diagnoses exist, and that they’re psychosomatic or “all in your head.” Thankfully, I have not encountered a significant number like this, though I’ve certainly experienced invalidation numerous times. Additionally, former clients, fellow TBI survivors, and other peers with my various conditions have shared their infuriating horror stories of invalidation. Just because there isn’t an MRI, blood test, or other quantitative test that can show some of these challenges, doesn’t mean they are not real. Just because someone, even a medical professional, doesn’t understand it, doesn’t mean it’s not real. Just because you have to prove it over and over again going through the disability process (see my video on this here), doesn’t mean it’s not real. Each of us is the expert living in our own bodies. We are in our bodies every second of our entire lives. A medical provider, friend, family member, and stranger alike have absolutely no idea what you experience. They might understand and empathize with some things, yes, but each body is as unique as the other eight billion on this planet. No one knows you like you. This is both a lovely gift and a huge detriment. Because no one knows you like you, it can be difficult to communicate how you feel and what you need. Sometimes I know I don’t know how I feel or what I need, so how can I tell someone else? Speak up and try, and repeat as often as necessary.

Advocating for myself has been the most exhausting, never-ending battle on this journey. I talk fast with (and admittedly sometimes over) providers because I usually feel rushed and never know how much time they’re going to dedicate to my appointment, and I will be heard. I’ve had to fight for myself in personal injury lawsuits, go up against the behemoth of Social Security for years, seek ways and providers to make my life better, and sometimes fight very hard to want to keep living, especially in the early years post-injury. It’s been a fight to get the help I need and deserve, to come to terms with my limitations, and to be okay being me as I am. It’s not been an entirely solo journey. There are countless people who have been a part of it, and I couldn’t even begin to make a comprehensive list. You all have my deepest gratitude. Even those who have invalidated me have taught me something and made me advocate for myself even harder. Because I’ve been vocal, persistent, stubborn, and supported, I’ve not given up even when giving up seemed the only option left.

Not everyone has people to advocate for them. Sadly, this is the case with most TBI folks, as it’s common to lose friends, family, and community after injury (I know). For those who are even less functional than I, it’s even harder to advocate for oneself. No one should have to fight this hard, but it’s the unfortunate reality most folks with TBI face. There are times I didn’t believe I was worth the fight, that I wasn’t worth the trouble, the expense, the time, or energy. While others believed in me, I had to still believe in myself: that microscopic one percent of believe when the other 99% was pure, unfiltered doubt.

Keep fighting. Keep advocating. It’s easy to say, “don’t give up.” It’s the hardest to do it. You’re worth it. Period. No matter what anyone else says or thinks. Ten years from now, hopefully you can say it was, and you are, worth it, too.