Have you ever had an event or a diagnosis completely alter the course of your daily life?
Initially, when you read this your mind probably reverts to COVID.
Schools were closed, people lost their jobs, everyone was stuck inside, and so forth.
I think it is safe to say that everyone’s life altered in some way, shape, or form during this pandemic, and life was hard for everyone, whether mentally, physically, financially, or emotionally.
But what if something else came up later in your life, changing your “normal life” again?
How would you react? Would you be angry or scared? Would you be in denial?
In August of 2024, I had a seizure in the dugout during a softball game.
This was terrifying for my father to witness because no one on either side of my family has ever had a medical history of seizures or Epilepsy.
I was taken by ambulance to two different emergency rooms where the doctor concluded that it was just a passing out episode and I was released.
About a week later, I followed up with my Primary Care Physician, or PCP, who decided we should have the EEG performed. On Sept. 20, my father and I drove to State College to receive the EEG.
EEG is short for electroencephalogram, and it is a recording of brain activity. Below is a link that explains exactly what an EEG is.
To prepare for this test I had to arrive with clean hair and half the amount of sleep I normally get. So that meant that I only had three hours of sleep in my system.
I went into the building and I was frustrated because I knew in my heart that this test was pointless. After all, there was nothing wrong with me.
The test then finished and I arrived back at school.
The following Saturday, Sept. 28, I came downstairs because I was about to go to my soccer game.
I briefly asked my mom if we had gotten a call yet regarding my results.
She told me to follow her into the living room where my dad was sitting, and that is when they delivered the mind-boggling news that altered my “normal life.”
My parents told me the EEG found I was at risk for having more seizures, and that I was diagnosed with Epilepsy.
My stomach dropped and my brain felt lopsided. “Epilepsy, seriously? You guys must be joking with me,” I thought.
This was not real. It could not possibly be real. How could this possibly happen?
The next words that came from my mouth were, “Now what happens?”
I was prohibited from driving, which was a crushing restriction for me because I had been looking forward to being able to drive for so long.
In early October my parents and I drove down to Hershey for an appointment with a Pediatric Neurologist.
At this appointment, the EEG was reanalyzed and the Neuro confirmed the readings, and the diagnoses, and this is when it all really set in.
I am 16 years old and have been healthy my whole life, then out of left field, I have Epilepsy. This all just does not make sense!
Something a typical 16-year-old looks forward to is getting the privilege to drive, and that was stripped away from me.
Six months. Six months they told me that I could not drive, and I just could not process this.
My life has been affected by this in other ways.
Hunting is a big part of who I am, and my personality, and they told me no more driving my four-wheeler for those months.
I am not allowed to sit in an elevated tree stand anymore, only a ground blind. If I am up in the tree I have to wear a harness.
At 16 years old you can hunt legally by yourself. I can not. I have to be accompanied by my father at all times.
I have been a strong swimmer all my life, but can no longer swim unsupervised.
I have to carry around a rescue medicine with me at all times along with a medical ID bracelet.
I am on medication and by the end of the 11-week program, I will be taking eight pills total (four in the morning and four in the evening).
This may not seem extreme to outside eyes, but it is extremely challenging to readjust my lifestyle, to adjust to this new medical illness.
My parents and I still do not have all the answers we seek, and with further testing, we hope to discover those answers.
When we hear Epilepsy we think of major full-blown seizures, but there are smaller bits and pieces to this illness.
There are times throughout my daily life when I will be sitting in class and all of a sudden I feel drowsy and it looks like I am falling asleep or daydreaming, but I am not. I am actually having a seizure.
My eyes begin to twitch and they open and close. My head becomes so heavy that my neck cannot support it, so it will sometimes lower. I can see and hear, but I can not process the information being taught. I can not physically talk nor sometimes can I move my hands, and when I do have the ability to move my hands in a manner of note-taking or typing it is scribbles and jumbles of nonsense. These “episodes” can last seconds, or they can last minutes, and when they are over I am confused and in a state of brain fog.
This is frustrating for me because I will miss out on key information in classes. Or it will happen at other points outside of the educational aspect of my life.
It is embarrassing because I know that I look funny when this is happening.
The worst part is I have no control over it, and I do not know what it is or how to make it stop.
My body twitches sometimes when I am falling asleep and wakes me up. It twitches in the mornings and throughout the day at random times, and I have no control over it.
A lot of these smaller bits and pieces of Epilepsy are typically overlooked and mistaken for a variety of different things.
November brings awareness specifically to Epilepsy, but there are so many more people, who have been diagnosed with other life-altering conditions, who go about their normal lives for numerous years, and then out of the blue have a new diagnosis.
I know there are times when I am frustrated and confused and I just want to be “normal,” and I know there are so many others out there who feel this way as well.
People who have a diagnosis that alters the course of their lives seek to be known and accepted.
They just want to be “normal.”
I have some beautiful news to share with the folks out there who are feeling this way.
You are beautiful just the way you are and were made.
You are not alone, and you never have to be ashamed of who you are.
You are thought of, loved, and accepted.
Your illness does not define you as a person.
Hence the reason I want to share my favorite quote which is from the movie “Wonder.”
“Why blend in when you were born to stand out?”
Be proud of who you are as a person. We were all wonderfully uniquely made and that is something to be proud of.
So instead of thinking why me? Why can I not be normal?
Think of how far you have come.
Always remember the words that the famous actress Keala Settle sang during The Greatest Showman.
“I am brave, I am bruised, I am who I’m meant to be, this is me.”
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