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

To FACE PALM or To FACE PLANT that is the question?

BY HOPE A. BEVILHYMER

Too Face Palm or Face Plant that is the question… You are probably wondering why I would want to do either.  By definition to Face Palm is to physically place your hands flat across your face in a gesture of frustration, embarrassment, shock, surprise or disappointment. To Face Plant is that you fall, and land directly on your face. In my metaphoric world these are very important in decisions I make.

I have Face Palmed many of times over choices and decisions I have made. Most of the Face Palming has occurred because I allowed fear to over run my decisions.  Fear by far can do damage so deep that it can be difficult to bounce back.  There have been opportunities and relationships where I have allowed the fear of the outcome to waiver my choices.  I started to realize awhile ago I don’t like to Face Palm myself.  I do not think anyone would like to do it over and over again.  With the frustration and disappointment that I was experiencing I figured this was not working and I needed a change.

One day I was faced with an opportunity to change my career choice.  I had other ideas of were I wanted my life to be and what I wanted to accomplish. All of these thoughts and ideas I had did not include my further employment with this company.   It made no logical sense for me to just up and quit.  By no means did I dislike the company I was working for.  They treated me well and I loved working with my coworkers.  Day in and day out it was eating at me that I needed to up and quit.  I had no back up employment…I knew I would be in a financial struggle…Then I let this little thing called Fear of the UNKNOWN creep up on me.  I started to doubt my decisions. I started to question everything about it.  It was driving me mad!

Then I thought to myself… You know what how many times have I faced fear in the eyes and won.  How many times have I thought that something is not going to work out and it just fixes itself?  I decided that day too FACE PLANT it… This was the action of letting go of all fears, all doubt, all hesitation, and all worries and just go for it.  When I let go of all those negative butt kickers and just FACE PLANTED, I quit that day. To this day it was one of the best choices that I made.

 I think of Face Planting is just that letting go of the negative and going all in with the decision or choice that you made. Sometimes the outcomes are not always what you hoped for, but you have learned something along the way.  So ask yourself before you make a choice or decision… Do you want to FACE PALM yourself because you should of… would of… could of… done something, but you let FEAR of the outcome to get in the way or Do you want to FACE PLANT and let go of all the negativity, fear and what if and see a beautiful landing that you will hear people say nice FACE PLANT..

Lessons From a Father: Lesson 5

5 Lessons from a Father

By Hope A. Bevilhymer

Whose Laughing At You?

LESSON NUMBER 5:

Over the past several months I have been writing 5 Lessons I learned from my Father. It has been 2 years since his passing and I have compiled a list of things that he has taught me over the years.  With this being the last lesson of this series I thought I would recap on the past 4 Lessons he taught me.

LESSON 1: REMEMBER THE 5:  This lesson was about the people who are in your life. 
LESSON 2: THERE IS A STORM BREWING:  This lesson discussed how there are storms that arise within our lives.  It just depends on how we weather the storms.
LESSON 3: DON'T BE SO DUMB:  This lesson talked about how we should use our brains to accomplish things.  Work smarter, not harder.
LESSON 4: FAITH IN HUMANITY:  This lesson discussed how we should keep to our word.  If we say we are going to do something we follow through.
 ( You can read all these in my blog)

Which brings us to the last of these lessons. Whose Laughing at You?  The answer to that question should be yourself. Because if you can not laugh at yourself, then who can.  Through all the trials and tribulations that us as a family has endured, I have learned the most valuable lesson from my Father.  If you can not see the humor in things your doomed.   

My Father had two laughs.  One was something was funny and made him laugh and the other was he was up to no good.  As kids he would start water fights with us in the house.(My Mother did not approve) He would start WWF (WWE for those who are younger) Wrestling with all of us kids.  We purchased him a paint ball gun for Christmas one year and he decided to tag everything in the yard including my mothers lawn statues. It was a winter pink mess.  He would leave a cup of water on the top of the door sill leaving the door open slightly and when you opened it the water would fall on your head. He was constantly joking around and keeping things humorous in the house.  I think he learned it from his mother my Grandma Bevilhymer.  She was quite the prankster as well.  She would start food fights for no reason and go on the slip n slide with us.  I remember one time we were leaving my grandparents house.  I was fairly young and we said goodbye to our Grandpa.  We couldn't find my Grandma to say goodbye too.  So we decided to leave.  When we left we walked out on the front porch and proceeded to get hit with 5 gallons of water.  My Grandma was standing on the roof with a 5 gallon bucket of water waiting for us to leave.  She dumped it on most of us and said "Bye Love You."

I learned humor early on as a kid and I am quite the funny person if you are around me long enough. I think with this lesson I was able to cope a little better with all the things that have been thrown my way. I remember when I first had my leg amputated.  It was difficult for some people to handle.  They would act like I had a terminal illness and this was it.  From day one of the amputation I have done nothing but find the humor in it.  I made a choice to have it done so now I am stuck with whatever challenges it has in store for me. I mess with people all the time when it comes to my leg.  It was a couple weeks after my amputation and several of my friends were going to go Lagoon.  I was bored out of my skull and I wanted to go.  I still had stitches and the cast on.  I ended up going. We went on every ride and even did the 150ft sky drop.  We were getting ready to go and it was late.  They wanted to go on the Haunted Castle ride.  So after the ride was over one of my friends was going to get my wheelchair. ( I did not have my prosthetic at the time) I got off the ride and instead of waiting for my friend to get the wheelchair. I had a brilliant idea to hop to the wheelchair.  As I did this I caught my sandal on crack in the ground and tripped.  When I tripped I landed on my stump full force.  Every imaginable pain sensation was going through my body.  Lagoon did not know what to do with me so they got one of their stretcher things and took me to their medic area.  My stump just hurt and I had cut open the other leg by falling.  The medic from Lagoon came to me with a serious look on his face, he was carrying a clip board.  He started to write down some stuff and then he looked at me said what exactly happened.  I said in the most serious voice possible... I was riding the Samurai and my leg fell off.  Can you help me find it?  He had wrote down the whole thing.  We ended up telling him what happened, but it was a crappy situation that we were able to look back and laugh.

So as I wrap up this lesson thing.  Don't take life so serious...We only have one of these lives so have fun with it.  If you truly look back on some of the most happiest times of your life... What were you doing?  Probably laughing at one point or another.






** Stay tuned next weeks blog is called: Too FACE PLANT or FACE PALM that is the question...
www.hopeabevilhymer.com

Lessons From A Father: Lesson 4

5 Lessons from a Father

By Hope A. Bevilhymer

WORD

LESSON NUMBER 4: True Faith in Humanity

 

I am saving the best ones for the last.  This is by far a lesson I have kept with me as long as I could remember.  My Father taught me that your word is your bond... Whatever you say you are going to do... You do it.

He worked graveyards when I was little so bonding time was limited to the afternoons when he was getting ready for work.  I always remember he would say to us sometimes would you want to go rollerskating in the morning. Knowing he would just be coming off a graveyard shift.  We would say yes that would be fun.  Sure enough the next morning he was ready to go rollerskating with us.  He would do this often with all sorts of activities.  As I started to get older is when I noticed whenever he said he would do something he would do it.  I thanked him one day for assisting me with a friends vehicle that had broken down.  I thanked him because no matter the situation if he said he would be there, he would.  I never had to question if he was going to not show up. He told me in a very firm voice "Hope, if you say your going to do something...Then you do it. You do not back out,You give it your all in everything you do.  Your word is worth more then you will ever know." He then went on to explain to me that there will be people in the world who will say they will do something... and they don't. He went on stating they can talk all they want about what their going to do, but its those who do it that will have the most reward.

As the years passed I noticed myself applying this lesson to all of my life.  This included relationships, my work ethics and other aspects. When you keep to your word you build a characteristic within you that is one that people value.  Recently this subject come up with my spouse and I.  Every year for my spouses birthday we go camping.  I had scheduled the camping trip in March and we were not going to go until the first week of June.  So planning for the camping trip was in motion.  At the end of April I received an invitation to play a show with my band The Feros Project at a major festival.  The date of the performance was the first week of June.  Our band was going to be paid a good amount of money to play and the exposure was going to be great.  I had a problem though... I had already committed to go camping with my spouse.  I sat down to talk with my spouse and they said "Well do what you want, but we had made a previous commitment." I knew at that moment what I needed to do. I had made a commitment to go camping and I needed to keep to my word.  

Keeping to your word is very simple and this is me reaching out to you.  I keep my faith in humanity that everyone applies this lesson to their lives. If you say you are going to do something...Then do it.  You will see a transformation in your life.  Your decisions to do something will be easier.  Keep to your commitments that you have for yourself and for others. I will keep to my word and continue to do the weekly blogs!! Stay tuned for the last lesson of the 5 part series.

Lessons From A Father: Lesson 3

5 Lessons from a Father

By Hope A. Bevilhymer

LESSON NUMBER 3: Don't be so DUMB!

  Sorry bloggers it has been sometime since I have posted here.

 If you have meet any of us Bevilhymers you will automatically see we are bigger in stature.  People joke all the time that I have a big German head.  Which is true most of the baseball hats will not fit me.  With us being bigger in stature we are able to use our physical strength to our advantage.  My Father was also a larger man.  The thing about my Father though is he was solid and strong.  You need something moved have one of us or a couple of us come move it for you it will be no problem.
  
Recently I was working on my spouses car with my brother.  There was a bolt that just would not budge. I tried different wrenches, sockets and angles to see how I could get this bolt off.  I thought that if I used sheer force and muscle this bolt would loosen.  No instead I nicely started to strip the bolt and cut my fingers open trying to pry it with all my might.  My brother stopped me and he said did you not learn anything from our Father.  I responded in saying, "What do you mean?"  My brother then reminded me of the saying "Don't work harder, work smarter."  My brother then grabbed a breaker bar and the bolt just came off with ease.  My brother then reminded me that I did not need to use strength but use my smarts.

   My Father was constantly reminding me to work smarter.  I would try to lift heavy things and he would stop me and say step out of the box and see if this is the only way you can move this item.  I would then think of different alternates to pick up the item.  Most the time I would find something that would carry the weight of the item so I would not need to do all the heavy lifting.  Over time of him reminding me to use as he called it "The thing between my ears" and figure out the smartest way to tackle anything. I did not just use this lesson in just manual or physical ways.  I was also able to apply it in other aspects of my life. With relationships, employment and other daily activities.  I often forget too use this lesson in life sometimes.  This can get me into trouble because I will just dive in and go for it before actually taking the time to use my brain and take care of it the easy way.  If we take the time to just work smarter not harder then things might just go a little smoother. Why make a task more difficult then it needs to be. Use your brain!

Lessons from a Father: Lesson 2

5 Lessons from a Father

By Hope A. Bevilhymer

LESSON NUMBER 2: There is a storm brewing?

     It was a late Tuesday evening when the police showed up at my house looking for the parents of Hope Bevilhymer. I was sixteen and my parents were being informed that I was involved in an accident and they needed to get to the hospital.  The officer was very vague on what kind of accident.  My mother collapsed and my father had assist her to the car. They headed off to the hospital.
     After my parents arrived at the hospital, they were told I had suffered severe head trauma and they were not sure what to expect. After the evaluation I had a broken shoulder, a broken tail bone, a cast on my right leg from previous surgery for my club foot and both sides of my skull at the temples were fractured. With all the trauma I had experienced I was now on life support.
     Four long days passed for my parents and I awoke on that Friday pulling the tubes out of my throat from life support  I was very disoriented when I came out of the coma.  My mother looked at me and said " Who Am I?"  I followed her question in a really slow voice and said " You are my Mother, Now where the hell Am I and where are my clothes?".  I did not know how I had arrived in a hospital.
     My Father entered the room and he sat down upon the bed then asked the same question " Who Am I?" I responded the same way.  He then grabbed my hand and said "You know how we always talk about the weather."  I said, "Yes I remember about the weather."  He said "There was an accident and we are right in the middle of one heck of a hurricane."  I thought to myself okay this is not good.
     My Father had taught us growing up about his weather system.  We are not talking about the weather a meteorologist is involved in.  We have a weather system on the severity of the issue that has arose.  With the head injury it was a hurricane and I needed to be prepared for some really turbulent times. When my car was broken into and all the windows taken out.  I asked him what the weather was like.  He responded by saying it is heavy rain and you will need to put your rain jacket on, but after awhile the sun will come through those heavy clouds. So I knew at that moment it was going to be rough road through the storm, but the sun will shine. 
   As I became older, first thing I would ask him is how is the weather.  I feel this was a great lesson my father instilled in me because it would prepare me for what was about to come.  I was not blind sided or thrown off on the severity of something because of this weather system. I would just put my appropriate gear on for each different storm.  I also realized when I was older that no two storms are the same.  You may have been through something before.  Things change, circumstances change and people change. Each storm changes.
So when your faced with a storm that you are not sure what to do...  Take a moment and step back to find out how severe is the storm.... I put my galoshes and use my umbrella frequently too weather the storms.  

 

Lessons from a Father: Lesson 1

5 Lessons from a Father

By Hope A. Bevilhymer

  On Tuesday 2/18/2014 would have been my Fathers 59th Birthday. Unfortunately there will be no Birthday Cake, no Birthday Wishes, no Hey Dad I Love You and no Spending Time with you.  He left this earth a couple years back and today I have chosen to remember him.  Remember all the things that he taught me.  I am one of the fortunate individuals that knew without a shadow of a doubt he loved me. As I think of him on this day I think back too the lessons he has taught me. Over the next several weeks I will be posting the 5 Lessons I learned from my Father. I think if my Father was standing in front of me today what he might say to me...

REMEMBER THE 5

LESSON NUMBER 1: REMEMBER THE 5

 This is a lesson he instilled in me during my early teens.  I am a believer in people.  No matter their past, present or future. I believe each individual has their own light about them.  I seek the good in people, with this I give it my all not to give up on people.  This can be both a blessing and a curse.  A blessing because I am that one person you can always count on.  No matter how you have treated me or the choices you have made in your own life, I don't give up on anyone.  It can be a curse as well. Because of my choice to look for the good and light in everyone, no matter what. Sometimes I let people get the better of me and I'd arrive home from a hard day. Here I was watering my face and sniffling. ( I call crying watering my face instead of crying because technically that is what your doing is watering your face.)  My dad witnessed this several times he proceeded to put his hand up and told me to REMEMBER THE 5.  I looked at him puzzled not know what he was meaning so I did what any sensible kid would do and slapped his hand to give him 5 and said "Right on Dad."  He then said no I want you to REMEMBER THE 5.  This is how many people you can count at one time on your hand that loves you unconditionally.  It can be family members, close friends, and whomever you would like to put on this hand.  He then said these are the people who will see your good, bad, ugly, happy, sad and whatever emotion you are having and will love you just the same.  No conditions, just straight up Unconditional LOVE.  These individuals are your foundation.  They are the ones who hold you a float, provide you strength and encouragement daily.  He told me everyone else is the bricks that make up the building.  You can build this building however you choose.  Some bricks are so precious and rare that you guard them with your life. The thing he told me about this building and the other individuals that are in my life.  Is at times others will get the better of you and you will feel sorrow.  He said the nice thing about this building is if you don't like the bricks you can rearrange it until it is what you desire.  He let me know that I didn't need to water my face as long as my foundation was solid.  He said REMEMBER THE 5. 
As I grew up my heart would sometimes feel heavy about how others had treated me.  He would just look at me and raise his hand and give me the 5.  I would return by saying I know stop sobbing it has nothing to do with the 5. Almost every time he did that it would lift the weight of the burden off of me.  This lesson taught me that we do have individuals around us that are our strong foundation. If things are not quite what you expected, then change it up and see what the new look adds to your structure.