Living with a Traumatic Brain Injury

I consider myself a fairly open book. I am not a fan of secrets {maybe because they are hard for me to keep?} and I tend to overshare more than keep things to myself. I've been writing a blog since 2005 so sharing my life on the internet isn't something that's new to me, but keeping things to myself is. Five years ago, I was driving my minivan with our golden retriever Sophie to pick up my daughter from a friend's house. I was stopped on a two-lane road waiting for traffic to pass so that I could make a left turn into the neighborhood when a minivan {the exact same make, model, and color as my own} didn't attempt to slow down and rammed into the back of me going around 50 mph. I was able to walk away from the accident, but it didn't take long before I realized that even though I didn't have any outward scars and the bruising and swelling were going down, there was something more going on. I was diagnosed with a traumatic brain injury {TBI} and now, with the insurance settlement behind me, I can talk about what it's really been like to live with a TBI.

Living With a Traumatic Brain Injury

The Night of the Accident

The evening of the crash, I don't really remember a lot. I remember the music playing on the radio and reaching back to scratch my dog's head as she sat in the middle row of the minivan popping her head between the front seats. I remember hearing the crash and the crunch of the gravel {it still brings up PTSD if I hear those sounds now} and my head hitting the back of my seat before feeling it fall backward almost like someone pulled the handle to release the seat back into the recline position. I remember wondering when it would end because the force of impact continued to push my stopped car forward for what felt like forever. The music stopped and my initial thought was to jump up and get out of my car.
I looked back to see traffic stopped on both sides. A man in a car I remember clearly watching for in the oncoming traffic lane was jumping out of his car and holding onto his car door as I staggered out of the front seat of mine. I looked back and saw my exact same minivan behind me the front crumpled, smoking, and airbags fully deployed. I had been pushed hundreds of feet forward from my stopped position. 
I called 911 and the rest is a blur. I remember it was cold and rainy and I started shaking uncontrollably from shock. I do remember the officer on the scene who was less than helpful telling me to get back into my car to get warm. She asked if I wanted to get an ambulance transport and I remember telling her I was fine. My husband was with our youngest son at swim team practice and he quickly pulled him out of the pool and was at the scene of the accident in about twenty minutes. When he got there, I remember just losing it. He looked at the minivan that was closest to the officer {the one that had hit me} and he thought it was my van. I pointed much further down the road to where my minivan was and he quickly ushered me into his warm car and I happily let him handle the rest of the interactions with the officer.
The two older individuals that crashed into me were Ukrainian and spoke no English. They were coming from a church service and the witness who saw the accident unfold said that it didn't look like they had made any attempt to slow down. Almost like they never even saw me stopped. The officer ticketed the driver for speeding.

I didn't really realize the extent of the damage to my minivan until we went to the impound lot a few days later to pick up my belongings before signing it over to the insurance company. It was a total loss. The whole steel frame of the minivan was bent. The back windows were blown out from the impact. The automatic sliding doors had been knocked open and were stuck in place because the back bumper had crumpled forward too much. The impact of my head hitting the driver's seat was so forceful that the seatback had actually broken. The brand new rear tires were deflated and I was finding items from my front console that had flown backward into the rear of the van.

You can read a little bit more about the night of the accident and see pictures of my van after here.

I have never really been involved in a serious accident so I wasn't sure what I should do. Here's what I wish I had done:

What to do After a Serious Accident

1. Go to the Emergency Room
Even if you think you are ok, getting care as soon as possible will help you get the proper treatment. You don't have to take the ambulance offered if you have transportation but seek medical care as soon as you can.
2. File an Insurance Claim
Call your insurance provider as soon as possible and open a claim. Only speak to your insurance provider about the accident. If the other party involved has insurance, their insurance company will start calling you because they will want to settle the claim. 
3. Find an Attorney
This is something I regret not doing sooner. If you are in a serious accident, find an attorney who can help you right away. This will help ease the burden between your health care and the car insurance claim.

PIN THIS FOR LATER:

Diagnosed with a TBI

The struggle

Let me start by saying, you should be getting annual physicals. This was so important in my treatment because I had established care with a health care provider who knew me and my health history. I was evaluated less than 48 hours after the accident at an Urgent Care facility who was able to help treat the swelling in my neck, but weeks later, when I started noticing some mental deficiencies, I went back to my primary care provider {PCP} who helped point me in the right direction.
At the time of the accident, I was not only writing my blog, but I was also substitute teaching at my kids' school. A few weeks after the accident I felt good enough to take a job and while taking attendance, I remember looking at the roll sheet, reading the name off the list and that name wasn't what came out of my mouth.
I struggled coming up with words as I spoke and would often ramble just trying to get my point across. I'd feel like I'd get off topic often and like I wasn't making sense as I tried to hold a conversation. About the same time as my accident, my husband's grandmother suffered a stroke. I felt like I had more in common with her as she struggled with many of the same cognitive discrepancies that I was struggling with.
I was tired and got headaches daily and I noticed as I tried to read {something I did quite often} I'd get distracted and wouldn't be able to focus.
My kids would get frustrated because I'd often ask four or five times if they had any homework or how their day was and I noticed that my short term memory was barely there. I would have large gaps in my memory {something I still struggle with today, more than five years later}. 
I also couldn't remember a string of numbers. There were times I just needed to remember three numbers in a row, I couldn't even do that. I felt like I was a horrible friend and mother. I would struggle to remember if I had actually responded to a text or if I had just rehearsed it in my mind and then as I went to check my texts to see, I'd get distracted and forget what I was doing. 
These gaps in memory were some of the hardest to overcome. There was one time I was driving home that I forgot how to use the turn signal in my car. This is something I've done hundreds of times and yet I couldn't remember how to do it. I also couldn't remember how to drive to a friend's house. Again, a place I've been to hundreds of times, and yet I couldn't remember how to get there. Another time, I was driving home from a doctor's appointment and I couldn't remember how to get to my own house. I'd often rely on my GPS for directions from places I went to often. 
I've always been a decent writer and could spell pretty well, but I'd often find myself confused about homophones, you know, those words that sound the same but are spelled differently. I'd find myself writing won when I meant to write one or eye when I meant I. This is when I knew {new} something wasn't right.

The long road

I went to my PCP who referred me to a neurologist. Neurologist appointments are hard to get {oh the American health care system!}, and after a few months {it was four months after my accident}, I was able to get into a neurologist for an initial exam. 
I did a few cognitive tests and didn't feel great about the results, but even though I missed a few of the recall items, I was able to order my thoughts enough to answer his question of naming 10 animals you'd find in a zoo. I chalk this up to being a stay at home mom with a zoo membership for more than a decade so I systematically walked through the zoo in my mind to each animal enclosure and named those off. Turns out, this was a coping mechanism I was using without really knowing it. It was enough to not draw any red flags from the neurologist who told me I needed some brain rest and to drink some stiff drinks on the beach during our upcoming vacation to Cancun.

Turns out this was the first time medical care let me down on my road to recovery.

The cognitive discrepancies continued to happen. My short term memory was not improving. I no longer found any joy in reading books because I couldn't recall or track the plot lines, so I stopped reading. I was getting treatment for other injuries {my neck, in particular, was causing nerve pain that radiated down into my hands}, and I would have multiple doctor's appointments each week that interrupted multiple hours of my day. I was exhausted and I didn't feel like anything was improving. My brain was tired. 
I no longer had time to substitute teach and be in my kids' classrooms because the doctor's appointments were taking up most of my time and the plans I had for my blog {I had just purchased all of the equipment to start a podcast} were put on the sidelines {still haven't started that podcast!}. 
It wasn't until we hired an attorney that specialized in brain injuries that I was able to start on the path for treatment. They were well versed in TBI's and were able to send me to the best of the best in the Seattle area to start getting a proper diagnosis.

Getting evaluated

I sat down with a psychologist for an evaluation that took more than six hours and left me mentally exhausted for days. I met with a top neurologist who sent me for MRIs and brain scans and was able to develop a treatment plan. I was sent to multiple specialists who were helping to retrain my brain so that I could function normally. I've always had a pretty good memory and suddenly I needed to come up with systems {writing things down...a novelty!} to help me be more organized.
I initially took a look at the results of some of the tests and the write-up reports from some of my care physicians and had to not read them because the reports were not super encouraging. Allow someone you trust to review these documents so they don't throw you into the spiral of "I guess I can't's". 
My medical care was getting expensive and because of it, we had to move forward with a settlement from insurance. I had to maintain an online presence because my blog was my job and people aren't showing up to read about someone dealing with chronic pain and a TBI, but my attorney told me I should be aware there would be constant scrutiny by the insurance company {who obviously wants to pay out as little as possible}. 
I felt like my every move was being watched and I'd sometimes even think I was being followed. I've seen those Dateline episodes where insurance companies catch people committing insurance fraud and thought they'd take my trips to the gym {where I'd often leave with headaches} or walks with my dogs as something that it wasn't. 

Common Things People with TBI Struggle With:

-trouble paying attention and concentrating-feeling confused or foggy-learning and memory difficulties-problems selecting the proper words and speech-difficulty completing complex tasks with multiple steps-depression-anxiety-personality changes-apathy or fatigue-persistent headaches-trouble sleeping

The One Thing I've Learned Living with a TBI

That list right up there, I've struggled with all of them. Five years later, I still struggle with a lot of those issues but I have been working to manage them because if there is one thing I've learned living with a TBI is that it takes a lot of time to repair the brain. It's not a fast process for healing and you have to be patient. Rehabilitation often means a lot of highly trained professionals and a cocktail of medications. 
The most healing happens in the six months after a TBI, and healing starts to slow after the two-year mark, but it doesn't mean you can't continue to work towards improvement through coping. 
I've got coping mechanisms and I'm giving myself grace in healing but when I notice some of those discrepancies creep up now, it's frustrating because now it's just a part of who I am.
If you are living with a TBI, or think you have one {no matter how mild}, please seek out the best medical treatment you can find. Fight for your care, persist to get those appointments, and work to find healing.
It's a long slow journey. One I hope you never have to be on, but if you are, or someone you know and love has been diagnosed with a TBI, hopefully, this will help you understand them and their journey just a little bit better.
If this sounds like you and something you struggle with, feel free to reach out. I'd love to be able to use my experience for healing and not as something that continues to take away. You can reach out via e-mail rachel@rachelteodoro.com.
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