I’m not ready to share my story, of how I got hurt. It’s too difficult to face, though I do expect one day I can talk about it here. Instead, I want to share how I’m feeling now and what I’m going through. If you are someone living with a traumatic brain injury, you’ll maybe understand what it’s like. Hope to hear in the comments what your struggles are like.
Where am I now?
Sometimes because I don’t have headaches, I forget that I even have a brain injury (but self medication helps there I think). Then I’m confronted with something that requires brain power and I fall apart. You’d think I’d remember, since I’ve been dealing with this since 2019 – but even I forget about having the injury. Just a consequence of having it.
Somehow, I’m working. Thankfully, I’m remote. I have to close my eyes to talk, to focus on complex topics, to get through the day. I’m not sure how I’m not closing my eyes while I type this now (though I am making an enormous amount of mistakes). I honestly got lucky and have been paired up with the most rag tag bunch of people, they aren’t smart enough to notice I’m about 3 years behind on my career. And bad at it.
What they do notice is my inability to get along with people. There isn’t someone I’ve not fought, or something I’ve not made an issue out of that shouldn’t have been. I’m supposed to be their advisor, but I act more like an estranged, partially deranged, parent. My favorite thing to say is “no” – because it keeps me from being challenged. I cannot be challenged, I left a job because I was – and it was my highest paying job to date.
Let’s just talk about the things I’ve lost:
- My marriage, ended on a leap day.
- My rock star job, ended on the day my dead brother died.
Somewhere I recently read that 85% of people with brain injuries get a divorce. The injury was part of the problem and the thing that put the nail in the coffin. It ended most of my relationships. Losing my job should have made me commit suicide, with it I lost my entire social network – but I persist just like the nightmares.
The struggles that never quit
I’m forgetful, if you tell me something and I try to immediately think of it, I’ve forgotten. Names – never. Use that trick where you repeat it? If I make it that far. Motivation, I have none – depression rules the day. I’ve always been motivated by feeding my inner spirituality and trying to make it into a church is downright impossible. Instead I’m motivated to argue online, tell people they are sinners and move on.
No one can challenge me, if they do;
- They hate me
- They want to kill me
- I must strike back
- I must be right
- Their feelings don’t matter
Yes, I frequently feel like people want to kill me. Since I had my brain injury, I’ve been real focused on the core things that man is focused on and desires. I read a lot about how man acted in ancient times and what it was like before cities and farming – it is as if my mind goes there because as it regresses, it seeks out a simpler place.
I lack any and all executive function. I tried ADHD medications, however, they ruined my life in many ways. Not only were they addicting but they ruined all of my relationships. They also made me susceptible to suggestion by a really bad doctor – who shouldn’t have given me the drugs in the first place. I’d really love to name them, they were forbidden to prescribe me drugs when my insurance changed because they hadn’t given me any requisite testing. Just more damage done to my brain as I’ve developed a movement disorder due to the medications I was put on.
The darkest days
Moving away is probably the smartest thing to do. If only I could get my food air dropped, I could maybe avoid interacting with people altogether – that’s what people tell me I should do at least. Or I’ve imagined that. Either way – it gets worse.
Every day I wake up feeling like there is an emergency and I’m going to die. I need to find safety and it is probably true that everyone hates me. Every day.
Every other day, I wake up suicidal, I should probably just die. End it, you have no motivation or abilities. Watching the world evolve around you, move on, as it has since this happened is too difficult. Every day you have to face the fact that everyone hates you, they are suspect of you, you’ll never fit in or have any friends. You’ll never be anything again. You can’t even get a credit card you feckless loser. Once you lose your job, you’re on disability and you’ll never have anything ever again.
This has almost caused me to lose even more, because being hospitalized over these feelings isn’t an option either. In my experience, taking time off for medical reasons will result in you losing your job. Especially for mental health reasons, they will quickly find out and you’re on the streets. I’m doing the best I can to save what I have for as long as I have it.
Where do we go from here?
I wish I knew. I have tried to talk to those around me who claim to care to have a plan ready for when I lose my job and lose my safety net. I have tried to encourage them to help me seek services but they don’t understand I guess that I’ll even need the help. I feel like I’m always on the verge of losing everything and no one really understands that.
I need to find a neurologist. I need things like vestibular therapy (because of dizziness). I want to avoid talking about depression, I want to treat it. I want to get rid of this movement disorder (or figure out if I’m developing Parkinson’s Disease). I have insurance but no ability to navigate the American healthcare system.
I will try to post more about this, and keep the category going. I hope to see some comments if you are dealing with this, what is the same or different?
What is constantly on my mind lately are things like the NFL offices shooting and Rudi Johnson dying and how I very likely have CTE, but there is no way to diagnose it (and doctors are offended when you suggest it).
Further Reading & Resources
If you are suffering from a traumatic brain injury, see some of the links below. They range from resources for what it’s like living with a TBI as well as how to get housing and help for caregivers.
