Wednesday, December 16, 2015

Happy Birthday Reflections



39 years ago today I took my first breath. I opened my eyes and saw this big world ahead of me. With it being my birthday I reflect on the years past and see what lessons I have learned and apply the lessons in the years to come. Did I picture my life here at this moment... No but does anyone plan for circumstances out of their control... Again No! Here I am in the midst of a divorce and the future plans I had are shattered and now it's start over time. What lessons did I take from this past years experience.  First invest in you... I lost who I was and what I stood for over the past couple years. I did not take the time to invest in myself and I gave permission to someone else. Second Life and circumstances change constantly...It is up to you to move forward and evolve with what happens. If you do not you will be stationary as the world goes on. Third keep things light spirited. Through the hustle and bustle of life we often let it drag us down and the weight can be troublesome.  My advice is to not take it so seriously.  If you can't laugh at certain things and have fun in the process life will be too monotonous.  Go out have some good old fun whatever that may look like for you. One of the last things I learned in this past year is I am an amazing person who does great things in this world. I will not accept or allow anyone on this earth to treat me as I am not. I over looked that aspect this past year. I questioned my character and self doubted who I was. I know who I am. I am Hope. Remember to always do you. Have an awesome day.

Thursday, July 2, 2015

WHAT I LEARNED FROM CHOPPING OFF MY LEG

  
It has been 13 years since the last time I walked on my own two legs.  It was June 26, 2002 when I chose to have my right leg amputated below the knee.  I was born with a birth defect called clubfeet.  I had to undergo 29 surgeries before I was 25 to fix the deformity.  My best option was to have it amputated.  As I took my last walk on my leg before the surgery, it was bitter sweet.  I was scared to death because I was about to make a decision that was non reversible, but at the same time I was excited to see what the future had in store for me.  As I awoke after the surgery I sat up and immediately reached for my nonexistent leg.  It was done and now this adventure was beginning.  Throughout the years I have been able to grow and expand as human being.  These are some of the lessons I have learned with chopping off my leg.

LESSON NUMBER #1: THE BODY IS RESILIENT...

I am a strong believer in the ability to withstand a pain threshold only if you are able to silence your mind.  No it does not make the physical pain completely diminish, but it does elevate the really bad pain that one is going through.  I was scheduled to be in the hospital for 14 days.  The first couple days there was really no pain at all.  I had so much medication going through my IV’s that I really cannot remember it being horrible.  By the 3rd day the pain started.  It felt like a really bad dull bone ache.  That night it was rough I remember sitting in my bed and the pain was becoming unbearable the tears started to form.  Then I used a trick that I developed while growing up in the hospital.  The trick is this:  Think of Something Else.  Take your mind completely out of the current situation.  Think of your favorite place to visit, your favorite person (this one works really well), your favorite memory or anything that will just remove your mind from the pain and or the situation. You will be amazed how it elevates some of the pain.
I slowly request less and less medication as the days passed.  It was on the 5th day my doctor entered my room and asked if I wanted to go home.  I didn’t hesitate in requesting to be released.  When arriving home it was not easy sailing.  I was adjusting to not having a leg so I would stand up often and forget there was no leg and go crashing to the floor.  The pain was pretty horrible they had just amputated a leg so it was to be expected.  There would be nights the pain was so bad that I would be sweating and unable to get any sleep.  I thought it would never end, but then it did.  My body had healed itself and I had made it.  Over the years there has been many of times where I had thought what was I thinking in doing this.  From pressure sores, blisters and being completely sore from walking a prosthetic I thought of just giving up.  The thing that kept me going is the knowledge of how resilient we truly are simply if we allow ourselves too.

LESSON NUMBER #2 OPTIMISIM IS KEY TO THE HEALING PROCESS

My positive attitude has made this a whole lot easier to get through.  Hours before the amputation they have you sign your leg with a marker so that the doctor doesn’t accidentally take the wrong one.  I was supposed to just initial the leg.  As I picked up the marker I took it and drew dotted lines all the way around it and wrote in big bold letters “Cut on the dotted line,”  I knew that when I entered the OR room that I needed to have a good outlook on this.  That I need to look for the best in this situation.  If not I was going to be doomed. I decided to never feel sorry for myself and to not feel regret for the decision I had made.  I had to make the best of it. There was no other option for me.
I was about ready to leave the hospital and I was sitting in the hall in the wheelchair waiting for the final paper work.  I could hear crying and a girl saying to someone my life is over I cannot go on anymore. She continued to cry and I heard a ladies voice trying to console whomever was crying.  I looked over at the room just across the hall from me.  There was a young girl probably around 16 years old laying in the hospital bed crying and there was an older lady standing next to her bed.  The young girl had her arm amputated.  This went on for a bit as the lady tried to make it better and the young girl was saying how her life was over.  I decided to approach them.  I asked to enter the room and both of them said okay.  As I entered I could see the young girl looking at me with my leg missing.  I introduced myself and it was a girl and her mother.  The girl had been in a horrible accident and they had to amputate her arm just below the elbow.  I told the young girl that I had heard her crying and I was wondering if she was okay.  She started to cry and then proceeded to tell me her life was over and there was nothing she was going to be able to do with an amputated arm.  I stopped her before she could go any further.  I said to her that your life is not over and she was about to go on amazing venture with this.  I said you have one thing going for you right now and the rest of it is just minor hiccups in the road.  She asked what the one thing was. I said to her you are alive! That’s just it you are alive.  I explained to her that she could spend her days crying that her arm was gone or she could except it and embrace it. Then I said again, “We are alive.  I have one leg now so what.  When the cut my leg off they didn’t cut my life off as well.”  We talked some more and when I left I could see a difference in the girl.  Her mom walked me out of the room and thanked me.  She said that her daughter has not even smiled or stopped crying since it was amputated.  I realized at that moment that my outlook on this situation was key in my healing processes.  I was not going to be able to achieve my goals without keeping my head up.

LESSON #3: EACH PERSONS PERCEPTION IS DIFFERENT    

This lesson is the one that I have learned more over the past 5 years.  When kids under the age of 3 see me they stop dead in their tracks.  When they are in grocery stores, restaurants or any public place they will be walking with their parents and will just stop and stare.  I usually smile so they are not so scared.  They then look at their legs then my leg and repeat the processes.  The parent realizes their kid is missing and then comes back and grabs them.  I noticed that the kid is curious more than anything.  They cannot processes how my legs don’t match and theirs do.  The kids ages 4-7 think my amputation is something great.  They processes the prosthetic as a robotic leg.  There is a 5 year old boy who lives with me on occasion.  He calls it the robotic leg and anytime he gets injured such as sliver or scrapes the first question he asks is do I get a robotic leg like Hope.  He is ok with having a robotic leg. Most recently attended a wedding where there were two kids.  One had to be between 6-8 and the other one was around 9-12.  The younger boy asked me if that was a robotic leg.  I told him it surely was.  He then asked me how I got a robotic leg.  I asked how he thought that I had got it.  His analogy was that I was in the Rocky Mountains and fell off the mountain and hit a tree then I hit a rock.  Causing my leg to break and then they put a robotic leg on me. I informed him that was correct.  I learned early on that the younger kids get really scared when I tell them I had surgery and doctor had to take it off.  I stay clear of letting them know it was a doctor because I do not want them to fear going to the doctors. After the younger kid had told me how I lost my leg his brother who was between 9-12 approached me and asked if it was a really a robotic leg.  I said no its not.  He then was curios on what happened.  As I explained the whole amputation thing to him he had this look of intrigue on his face.  He was asking question after question.  Unlike his younger brother he had this look of being scared or not sure what to expect.  Most of the younger kids are the same when it comes to explaining about my leg.  As for adults they are unpredictable.  Each person is different when I was back East traveling I would often get saluted and thanked for serving our country.  (I have never served in the military) I always explain that I did not serve our country.  This happened a lot but only on the East coast.  Mostly on the West Coast I get asked if it is Cancer again having to explain it is not.  I have had people console me and tell me you poor thing and then give me a look of sorrow.  Some adults do the stare then look away and then stare and look away.  Of course there is those individuals who are not afraid to ask and just ask me what happened.  As I witness these human interactions with me I realized that each person has their own perceptions and feelings in regards to this. That I have to adapt to each situation that arises because I have noticed that most people are afraid of the unknown.    


These are just a few of the lessons I have learned over the years there are many more which I may touch on later down the road.  Just knowing that my body can pretty much go through hell and still come out on top only if I allow it too.  Through keeping a positive mind and outlook in regards to being an amputee will continue to help me grow and become a better person because of it.  Lastly ever person on this earth views a situation different then another person.  I am not recommending everyone go out and chop off a leg or an arm, but without my amputation I wouldn’t have been able to experience all the wonderful interactions and amazing things that have come from it.  I am grateful that these lessons have been presented to me.  I am better person because of it. MUCH LOVE-HOPE

Friday, March 27, 2015

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