My sister and I were watching a documentary about brains and how they work. I’m fascinated by brains, particularly those that have had a traumatic brain injury (TBI), because my brain has had one too.

In the documentary, they mentioned probably the most famous TBI in history: Phineas Gage. In case you’re not up on famous TBIs, Phineas was working on the railroad (all the live long day) when a 3 foot iron rod impaled his skull like so:

Yikes! This case is bandied about in TBI academic circles, because it’s truly remarkable. The rod destroyed much of his brain’s left frontal lobe, yet he survived for over a decade during a period in history when medicine was not what one could call “modern.” However, the effects on his personality and behavior were “sufficiently profound that friends saw him (for a time at least) as ‘no longer Gage.'”

So, naturally, as a human who has also experienced a TBI that profoundly effected my personality and behavior (for a time at least), I asked my sister what I was like after my TBI. Her answer surprised me, since I had no memory of it myself. She said I was horrible; short-tempered and just plain mean.

From my perspective, I remember everything that happened that night, from getting hit on the head to finally getting home hours later. In the immediate hours after my TBI, I was conscious, coherent, and calm. This is not just my recollection; it’s backed up by witness testimony. I reacted much like Phineas: he took himself to the doctor with a 1.25 inch (3.2 cm) hole all the way through his skull. When the doctor arrived, Phineas said, “here is business enough for you.” Funny guy.

Like Phineas, while everyone around me was panicking, I was the serene center of the storm. I directed people what to do: “You call 911. You go get me some napkins or something.” I even cracked jokes with the man who spent over five hours sewing up my skull. I can’t remember his name, but I generally remember what he looked like.

From my sister’s perspective, first of all, my physical appearance was horrifying. I had black eyes that went all the way down my neck. My hair, normally blonde, was reddish brown from the dried blood that I couldn’t wash off until the wound healed. From head to toe, I was covered in blood. My mom threw out the clothes I was wearing. I had clearly been through the wars.

My sister is a nurse (she wasn’t at the time of my accident), so as we were talking about this the other day, she started talking about the 10 stages of TBIs, which I don’t recall hearing before. If you’d like more information, I paraphrased the 10 stages from here. They are as follows:

• Stage 1. Coma: Individuals are completely unresponsive with no eye movement or opening, lack of speech or other forms of communication, and no purposeful movement.
• Stage 2. Vegetative State: The survivor has regained some of their reflexes. Their eyes may open and close, and they can even react to pain and loud noises. However, they are not yet truly conscious. 
  
• Stage 3. Minimally Conscious State: Survivors may drift in and out of consciousness. Individuals in this stage of recovery now have a limited awareness of their surroundings.
  
• Stage 4. Post-Traumatic Amnesia: The brain is in a severe state of amnesia, both retrograde amnesia (the inability to remember past events) and anterograde amnesia (the inability to form new memories). During this stage, the person may appear erratic and even display aggressive or inappropriate behavior.
• Stage 5. Confused/Inappropriate, Non-agitated: A person has trouble focusing and is still confused by their surroundings. Their responses to questions and commands are inaccurate and may not make sense.
• Stage 6. Confused/Appropriate: Survivors can follow commands and carry on short conversations, though they still have memory problems and cannot focus very well. They lack awareness of their impairments or safety concerns.
• Stage 7. Automatic/Appropriate: Survivors can follow a strict schedule and complete daily routines with supervision. However, they still have trouble initiating activities and planning ahead. They cannot yet live independently.
• Stage 8. Purposeful/Appropriate: Survivors’ self-awareness and memory have greatly improved by this stage. They still have impairments with social interaction and reaction times, and are troubled by unexpected situations, but are developing ways to cope. They can even live on their own with minimal help from others.
• Stage 9. Purposeful/Appropriate: At level nine, survivors are able to recognize and respond to the needs of others. They generally are able to complete familiar and unfamiliar daily activities, asking for help as necessary.
• Stage 10. Purposeful/Appropriate: By this final stage of recovery, survivors are functionally independent and have essentially made a full recovery. They can handle multiple tasks at once, initiate new tasks, plan ahead, and adjust to unexpected circumstances. Their cognition is still a little slower average, but they have learned how to compensate.

My TBI essentially skipped the first three stages; I never lost consciousness. According to my sister, I was incredibly lucky to make it all the way to stage 10. From the site linked above: “Some survivors of severe TBI may stall at levels 7 or 8, or at any other level depending on their injury.” She told me that the doctors said it was possible that I might not recover and that I might even die. That’s scary and also news to me.

As terrible as I looked, the damage that couldn’t be seen was far worse. She said the change in my behavior was much more alarming. For the first few weeks, I couldn’t even remember my family. I was slurring words and not making any sense. I couldn’t get the words out.

When I couldn’t get the words out correctly, I would get frustrated and verbally abuse those around me, and apparently, even throw things. I do not remember any of this, because of my inability to form new memories. I’m fairly certain that the earliest post-accident memories I have are from stage 6, which my sister said I reached after about six months.

A few months after the accident, I tried to go back to the college classes I had already paid for and was one week too late to get refunded. I distinctly remember sitting in the back of the classroom feeling despair, because I couldn’t follow what was happening at all. I dropped out of college and never really went back.

By stage 8, I had created a very complicated, but ultimately simple way to cope: sticky notes. I was lucky that my TBI mainly damaged my memory and little else. While I had lost a huge chunk of memories of my life up to that point and those that remained were in a jumble, I still had knowledge in my brain of things humans do almost automatically, e.g., driving, typing, tying my shoes, etc.

If I was driving somewhere, I put a sticky note with the address and time on the dashboard. If I didn’t do this, I would “wake up” from a reverie and panic, because I had no idea where I was going or why. I couldn’t focus long enough to remember where I was going and would just drive home. I had sticky notes all over my house telling me whether I had eaten and when, reminders to drink water, feed the cat, even reminders to pee, etc. I still use sticky notes today, but they’re more to do lists now.

At stage 8, I couldn’t multi-task. If I was doing something and I was interrupted, I’d completely forget what I was doing in the first place. I’m still like this sometimes. I could have a conversation and completely forget not just what we talked about, but that the conversation even took place. I would repeat myself a lot.

My sister said I reached stage 10 after about a year. That’s a year of my life that I barely remember during which, apparently, I was horrible to everyone around me. My sister says it wasn’t my fault; it’s very common with TBIs. At the time, she told my mom over and over not to take it personally, which of course, she did.

I asked my sister why she never told me any of this before and she said that I never asked, and well, it’s water under the bridge now anyway. I never asked? It’s entirely possible that I didn’t, but you’d think I would have before now. Even though I know it wasn’t really my fault since I wasn’t consciously aware of any of it, I still can’t help feeling badly about my year of being a monster.