The Mindful Muddled Mix Up: How to live with a Traumatic Brain Injury

**This is a taste of one of the chapters in my upcoming book called “My Still Small Hope.” I touch briefly in this blog on what it is like living with a traumatic brain injury.  This has not been edited yet so bare with the grammar.*

The mind is a masterful thing… It is a complex organ that controls our smell, taste, touch, sight, hearing, body movement and our thoughts.

It was May 1993 and I was 16 years old. A split decision on my behalf would change the course of my life forever.  I was attending a birthday party of some friends.  It was getting dark and the party was wrapping up.  A friend of the group was saying goodbye to everyone.  As she backed up her car I and another friend sat on the hood.  The girl put the car into drive. The other friend hurried and jumped off and I still was on the hood of the car as she was driving.  That is the last thing I remembered…

All I could see was blackness… I couldn’t open my eyes, but I was choking.  I thought to myself I am suffocating.  I could hear beeps and alarms.  Still unable to open my eyes I reached up and felt a hose in my mouth.  It was thick and it was making it difficult for me to breathe or swallow.  I did the most logical thing and pulled the tube out.  As soon as that happened alarms were sounding.

I finally opened my eyes and I was in a strange place. I did not know where the hell I was and what was going on.  A lady dressed in scrubs leaned over and said, “Hope you have been in an accident. You have been on a ventilator for several days and we need to put the tube back in.”  I was baffled at what was going on. There was a bunch of commotion around me.  They tried putting the tube down my throat and I was scared.  I didn’t know where I was and what was going on.  I started to become combative as they placed the tube in my throat.  They strapped my arms down to the table, while they put the ventilation tube back in. It is an experience that will echo in my mind forever.

Later that afternoon I was removed from the ventilator.  Unaware of what events took place days prior.  My mother explained that I had fallen off the car I was riding on.  When I fell I struck my head on the pavement.  Which had caused a fracture on my left temporal lobe and the force of me falling had made it spiral all the way around the base of my skull to the right temporal lobe  She went on and said that they had to life flight me from the park to the hospital.  By the time I arrived to the hospital I had coded in flight and I was having multiple seizures.  I slipped into a coma and they were trying to reduce swelling and bleeding on my brain. I had been in the coma for 4 days now.  The pain in my head was unbearable.  I couldn’t sit up, lie down or do anything without it feeling like it was going to explode.  I had sustained the skull fracture, dislocated shoulder, broken tail bone and was banged up.  I felt like a truck had hit me. 

Laying in the hospital bed my mom brought flowers into the room. She had me smell them.  I told her I couldn’t smell them.  She had me try again.  I still couldn’t smell them.  She got different things like lotions and smelly stuff to see if I could smell them and nothing.  The doctor informed me that due to the fracture and swelling it had affected the smell region of my brain. My smell was gone… Not till after I came off the feeding tube did I realize my taste was gone as well. 

It was time for me to go home. I was in the back seat of the car while my mom drove home.  It was a rough ride home. The car ride was making me dizzy and sick.  She would pull over every couple minutes to sit me up or lie me down.  My head wanted to explode.  A normal 20 minute ride home took us a couple of hours to get home. I felt hazy and unable to concentrate. I slept most of the time when I got home.

Sleeping was difficult.  I would fall asleep and start to dream there would be white flashes every so often. These flashes reminded me of flash from camera going off.  It would get so intense that it would wake me up.  I would have dreams night after night of me dying.  It didn’t matter what was going on in the dream I would end up dying.  My mother had to sleep with me on some nights just so I could rest.  My sleeping patterns changed from then on.  I am able to function on only a couple hours of sleep. 

Couple weeks after I had arrived home when the first one hit me.  I was standing one moment within a blink of an eye I was waking up on the floor.  I felt drowsy and out of sorts.  I was not sure what just had occurred.  I thought I had just blacked out or something.  That was not the case.  I just had experienced a grand mal seizure. For days following the seizure I felt like I couldn’t think straight. I was on a high dose of seizure meds.  The doctor explained that I would have seizures probably for the rest of my life.  I would have to maintain them with medication.  The grand mal seizures continued until I was 21.  I have been clear of seizures since then.  To this day I am still susceptible to have them.  The down fall with seizures is they will rear their ugly head whenever they want to.  You have no control over them.  

I adapted having no smell, no taste, seizures and the occasional headache.  Little did I know that there were bigger issues then the just the physical aspects. I felt like I was constantly loosing stuff.  I would try to back track and figure out where I put something.  I wouldn’t be able to remember. The doctor explained to me that I had damaged the part of my brain that had to do with my long term and short term memory.  Not able to remember conversations that I just had or where I had placed my keys. It was frustrating to the point I thought I was loosing my mind. I would flake out on commitments I had with people because I would forget.  

This was not working for me I needed to figure out a way to remember things.  I started to carry a little note book around with me.  I would write everything that came to mind down in this book.  It was a great way for me to reference conversations and things I needed to remember.  I still have a book that I carry.  I also came up with a way to memorize things.  I take visual pictures in my head of everything I come in contact with.  I will stare at something for a minute so it is imbedded in my head.  This was a great tool for me when I would loose material items.  When I lost something I could flash back through the mental pictures I had taken and locate the item. I do this with people as well.  Often people wonder why I am staring at them.  If they only knew that I am just snapping a memory of them so I don’t forget it.  Imagine having an experience with someone and not knowing if you will remember it tomorrow or a year from now.

As I get older more and more issues arise from having a head injury.  Several years back I started uncontrollably coughing anytime I ate food.  I was aspirating food into my lungs.  I would cough so hard that it was difficult to breathe.  I went to the doctor and they found out that due to my head injury I had forgotten how to swallow.  How could this be possible?  I didn’t have these problems previously.   All these years had passed and now I was experiencing this.  I had to go through occupational therapy to remember how to swallow again. 

The list can go on in regards to my head injury.  I have just barley scratched the surface on the extent the damage I received.  I do not tell you these things for sympathy or anything of that nature.  My hopes are to bring awareness to the severity of Traumatic Brain Injuries.  No two people are the same when it comes to trauma to the brain.  If you look at me physically you wouldn’t be able to tell that I had a Traumatic Brain Injury.  You wouldn’t be able to tell that I couldn’t smell or taste.  You wouldn’t be able to tell that I am deaf in one ear, I will forget things, I am vulnerable to seizures and many more things.  I vowed not to let a Traumatic Brain Injury control my life. I have been able to adapt and to figure out what will work for me. It is not always easy and I wish I could explain everything that I have experienced with having a Traumatic Brain Injury. Sometimes it is even difficult for me to wrap my head around my Mindful Muddled Mix Up. Through all of this, it helped me come to the conclusion that you will either let the disability own you or you can own your disability.  It was not a hard choice to own my disability instead of letting it consume me.  

MARCH IS NATIONAL TRAUMATIC BRAIN INJURY AWARENESS MONTH