"I have brain damage, what's your excuse?"
If you have a traumatic brain injury, my bet is that you’ve experienced some sort of emotional abuse during your healing process.
When my TBI occurred I was living in Denver Colorado, surrounded by loving friends and support. Four months later I moved, with my husband to Santa Fe, New Mexico.
We had planned the move prior to my accident. I was still very much in a fog and denial of what my injury meant for my life and by association, my husband. I seemed to be getting things done. I seemed to be managing. I did not understand that the symptoms that come with post concussion syndrome may not manifest or fully manifest for weeks or months after the injury occurs.
The four month mark was definitely when mine hit full throttle and only got worse from there.
So, in walks the issues of social interactions that come with a TBI. Anxiety, rage, over stimulation, memory loss, loss of social graces, loss of cognitive function like ‘squirrel brain’ that allows a person to carry on a conversation or engage in healthy relationships. The list has been lengthy.
I’ve had and still have all of these symptoms and more. Living in a new place with no friends or family nearby was not a good choice. I had no one who knew me before my injury except my husband and he was having his own course of issues around my TBI.
Not having someone around me who knew me, loved me and supported me “before” my accident invited more issues as I tried to form new connections and friendships.
I became nervous, insecure, fearful, unsure of myself, lonely, humiliated, too open with others and apologetic for behaviors that I could not control.
When I met new people I would over share and tell them that I have a brain injury and that I’m “not really like this”, as if I had to have a disclaimer out there in case of an inevitable social blunder. Usually my embarrassing moments came in the form of saying something inappropriate, that didn’t make sense, over animation, having long pauses in conversations because my brain couldn’t keep up, and swearing ALOT.
This lead to humiliation, loss of self confidence, self loathing and grief. I was embarrassed that I just couldn’t stop these behaviors. And I knew people in my new community were forming opinions of me based upon the post TBI behaviors. My sense of self was greatly eroded.
Being open and oversharing lead me to being an open target for the assholes of the world.
Human beings are not much different than other animals on this planet. Once it’s known that an animal is no longer strong, the weaker ones see an opening to attack. The vultures begin circling, awaiting their turn to begin picking at the wounded’s bones.
It’s nature. I think humans like to think we’re more evolved. But the truth is we have a very long way to go in order to reach a place of true compassion and empathy for one another.
I’ve had adult(s):
call me: “brained damaged” and laugh right to my face.
tell me: that he doesn’t believe I’m not capable of controlling my behavior.
tell me: that he doesn’t believe I wasn’t always “this way before” and that “my mother must have wanted to shove me back in upon my birth.” This one came from a doctor “friend” after I had added an appropriate comment within a seemingly innocuous conversation. The small gathering we were in just sat there and giggled nervously. No one spoke up in my defense. You may wonder how I responded. I froze. It’s like my brain just kept blinking, preventing me from speaking up for myself…..on a subconscious level trying to control a rage-full, unfiltered response so I wouldn’t be labeled later as a bad, out of control person….feeding into the descriptors this man was trying to paint of me. Later I felt intense self loathing for not being able to stick up for myself. Not rage at this person but for the lack of the ability to have the quickness of mind to respond to his abuse. To expose his words as the truthful reflection of him, rather than his words saying anything about me. He was being ugly. I was not. I was defenseless and I hated that my injury left me in that position… again.
tell me: that she never knows “which Liz she’s going to get…..the one she loves or the ‘other one’ and she can’t take it anymore.” This one came from a fellow TBI survivor who called me and my husband “ her chosen family” all the while she’s having alcoholic soaked rages directed at us and others, while never taking responsibility for her behavior. Never apologizing. Many others have been on the receiving end of her alcohol soaked rages. In her last event, I asked her repeatedly what I had done so I could address it and apologize sincerely if I had done something so awful as to deserve such behavior. She refused to tell me what I did. I asked her repeatedly in multiple communications. She’d say “she didn’t want to re-hash it.” “Re-hash it”? There was never a “hashing”. Since that event I’ve learned that addicts have projection behaviors that re-direct attention away from their actions onto others so the attention to their addiction-related behaviors are diverted. Addicts can be amazingly convincing in their diversion tactics. This person was my TBI confidant. She had a brain injury too. She supposedly related to all the issues I was experiencing. I shared my deepest insecurities with her. I was vulnerable with her. And she turned out to be a liar and a mean, manipulative drunk. I placed a great deal of value on the friendship. To the point when she had several drunken rages directed at me and others, I offered explanations for her behavior rather than telling her that the behavior needed to stop. I had become an enabler. I am direct and outspoken person by nature. I’ve always had a thirst for truth and transparency. I probably should have been a civil rights attorney or something. The desire comes from having a lying, manipulative, gaslighting mother. Executive function impairment that comes with a TBI does not pair well with natural directness and outspokenness. All those thoughts that you normally can stop yourself from speaking out-loud, tend to be spoken out-loud with a TBI. The alcoholic friend is a charming, highly talented, chameleon-like character. You’ve done something, she’s done something similar and can empathetically endorse and support your experience within a heart beat…..all the while appearing and feeling like she’s genuine. She’s great at validation. But unfortunately and painfully, it’s false. She’s an alcoholic. Alcoholics manipulate as a functional mechanism of being an addict. It’s nothing personal. It is what it is. I’m not the first and I won’t be the last on the receiving end of her behavior. For those of us with TBI’s it can be easy to be taken in when we encounter someone who is empathetic and we are vulnerable. The injury to the brain can limit our ability to discern if a person is genuine and safe….to pause and pay attention to the little voice inside of us saying “hmmmm….be cautious here.” My old self would have seen the warning signs. My injured self was not able to.
tell me: I “should just get over it and accept your brain damage and that you’ll never be the same.” This one came from the alcoholic “friend” whispering this to me while drunk and visiting with a gathering of friends. Again my brain froze. That sense of my brain blinking happened again. I just couldn’t bring words forward and speak.
tell me: “You’re no longer in your industry, you don’t know what you’re talking about.” This one also came from the alcoholic “friend”. I later thought…short term memory loss translates to long term memory loss and loss of expertise in a field and 25 year career? Is a doctor no longer knowledgable once she retires? I can no longer work because of my TBI but I lose my career knowledge and accomplishments too? But again my brain failed me and I could not respond quickly. I remained silent and seething inside instead.
blamed me: for getting injured and my resulting TBI.
treated me: as if I were drooling and unable to speak….openly as if I were clinically stupid because I didn’t put a bale of hay in the exact spot she wanted it. At the time I was volunteering at an animal sanctuary. Even there, I encountered people who fed off my vulnerability. I ended up fleeing from the encounter, humiliated and unable to go back. The owner understood once I shared what happened. I had loved working with the animals but I just couldn’t expose myself to future mistreatment.
told me 3 years post TBI: “Your symptoms have nothing to do with your brain injury. All your symptoms are due to a thyroid condition and menopause. I should know, my adopted daughter has a brain injury and your symptoms are nothing like hers.” WTH?! This came from a so-called doctor who was supposed to be experienced with hormone issues caused by brain injuries. This whack job completely dismissed my pain, my struggle and the loss of the life I had known, within a few ignorant sentences. She was proven wrong by qualified brain specialists….but her dismissal and lack of validation stung deeply and hung with me for months.
You might think from the examples regarding my TBI “friend” that I must be some sort of doormat. I don't think you'd find anyone who knows me, say that. Throughout my life I’ve been selective with the people I’ve allowed into my inner circle. Since my accident there’s been this thing where once a painful event happens my brain shifts away from it quickly. Then it will ruminate upon the experience for days, even weeks and then shift away from it again, as if it never happened. I believe it’s squirrel brain in action. And it's exposed me to a great deal of pain.
It’s important for me to say that when I said something inappropriate or hurtful and I later became aware of it, I owned it. I’ve experienced so much private grief at the hands of the symptoms of my TBI. So many times I had no awareness, memory or ability to control my responses to people and the world around me. I felt horrible about these occurrences. None of them were intentional. It’s like my brain just erupted and with complete apathy, in the moment it occurred. This is so difficult to explain to someone who’s hasn’t had a brain injury and experienced the associated rage issues.
Here's an example of one of my early unaware incidents: I challenged a very large man who was picking on a cashier in the grocery store. I yelled at him to “turn his shitty behavior on me and see happens. I’m not some little scared female who won’t kick you the balls and lay you flat.” All that just came flying out of my mouth without a thought to the consequences. Surely that could be seen as insanity. Luckily the guy must have thought I was nuts and people were gathering so he left quickly. That situation was one that my husband later shared with the judge at my social security disability hearing as evidence that my brain injury was real. He told the judge “Each day I’m afraid I’m going to get a call that she’s been arrested.” He was right to worry.
Thankfully my neuropsychologist found a medication that helped slow down my overactive, injured frontal lobe so that I now rarely have these events.
Looking back on all my painful experiences, I’m of the opinion that I need to be asking for more support. I have spent the past 5 years apologizing for having an accident that I had no control over. We’d never tell a person to apologize for having cancer. No one would ever say to someone with cancer that they “need to get over it”. Society would condemn such a person for being cruel.
But you see, that’s what can happen to victims of traumatic brain injuries. Not only is the malfunctioning of our brains a challenge but we are set up to deal with so much fall out in our social interactions. And there’s no way to avoid these events. We humans are social by nature. We need to interact with others. We need support.
I’ve come to terms with the need for my husband to speak up for me. To defend and protect me from the insensitive, the ignorant, the abusive. My brain just isn’t capable right now of that level of defense. I've always been independent. Having to ask someone to speak up for me has been like taking a stick in the eye but I've needed to do it for my wellbeing. I’m so thankful that he’s willing to do this for me.
I think all of us who have TBI’s deserve to have an advocate who is willing to speak out on our behalf. Awareness of the challenges TBI survivors experience needs to improve. Speaking up is the only way to accomplish this
Recovering from a TBI shouldn’t be a character building “event.”
We need emotional safety, calm, compassionate, empathetic and supportive environments. Self love is the only “event” we should be focused on outside of our functional brain healing.
What emotional challenges have you experienced since your TBI? What have you been able to do for yourself in order to get your emotional needs met while you are healing? Have you been able to ask for that kind of support? I’m interested in how you’ve managed challenging social interactions. If you’re willing, please share.
Let’s improve TBI Awareness