My name is Billie.
I’m 38 years old.
I have survived multiple brain injuries and surgeries.
I am tired .
My story is long and I often feel as if I’m boring others’ with my woes.
I hate that I am trapped in this body.
Trapped in a mind that seems to run on magic.
My story is as follows and is not yet over.
From a very young age I can remember headaches.
Terrible nauseating ones. The first real migraine I can remember was at the age of 4.
My parents had high school educations.
We were poor and health insurance was not really the greatest.
I was a happy kid though.
We had enough.
When I was 10 years old my siblings and I were playing in the backyard.
We were wrestling.
My sister did a perfect dive and landed on the back of my head.
I remember this strange feeling of vibration no pain.
We played as normal and went to bed that night.
As I lay there my left arm picked up of its own accord and grabbed my right shoulder.
You have to imagine this was very shocking for a kid.
I rolled off of my bed and onto the floor.
That’s where my Mama found me.
I was already completely paralyzed on my left side.
I can remember my Dad praying as he attempted to push start our truck.
My parents got me to the local hospital.
I remember voices and some horrible orange drink.
I woke up almost one month later, terribly thirsty and scared.
I looked to my right and saw a cup, I tried to get to it.
That is the very moment I realized I couldn’t move.
It didn’t seem real, a nurse confirmed it was.
I was completely paralyzed on my left side.
I didn’t understand.
I soon learned what they all knew.
A blood clot had ruptured on my brain.
That blood clot was a direct result of a condition called AVM.
I spent months in a wheelchair and in therapy.
I was saddled with a left-sided defect and pretty low self-esteem.
I was alive.
My Dad always said it was for some, “Greater Purpose.”
We will see Pop.
We will see.
After learning to walk and talk again, life could have and should of been cake.
But, life, it is what you make it.
I spent my teens fighting one person or cause, or just plain fighting for my life.
I was kind of this weak wanna-be warrior.
What I wanted, I did.
Consequences be dammed!
I suffered blackouts.
I kept silent.
I have always been the champion of the underdog.
I had to be.
My role as champion was mostly silent and covert tactics…mostly.
I often landed in trouble.
That is what your teenage years are for, trouble.
I walked with a limp.
I had a lisp, freckles and ginger hair.
I also had wee little feelings.
I always did.
They thought I was dramatic.
That’s what I have always been told.
I spent my formative years feeling apart from most people.
Sometimes missing minutes, even days in my head.
I’d wake up places and not know how I got there.
I couldn’t tell anyone.
When I tried I was dismissed.
Billie is dramatic.
My family loves me.
They had no real education or resources about brain injury.
Things could have been different.
They would have known about my brain injury and my epilepsy when I was a child. My parents did the best they could with the resources they had.
I grew up.
I married a great boy.
We had one child.
I’m one of those Mother’s that can actually say she almost died giving birth to her child.
Boy, he is worth it all.
He sure is my savior. He is worth the struggle, he is my Sun.
I started having tonic-colonic seizures when I was 8 months pregnant, they were terrifying.
If I’m not getting oxygen, my baby isn’t either.
I lived in fear for 20 minutes after I awoke from my first tonic-colonic seizure.
They couldn’t find Noah’s heartbeat.
Up until that moment I wasn’t even sure I wanted to be a mother.
I was 19 and had spent most of my life running and serving myself.
Hearing his heart beating strong changed my mind forever.
Someone to protect that needs me.
I was told I didn’t have epilepsy but a seizure disorder.
I was never referred to any neurologists.
Multiple ER physicians prescribed anti-convulsion medications.
I declined them.
Why would an otherwise healthy woman take a poisonous drug?
For a condition she doesn’t have?
That didn’t make much sense to me either.
So I didn’t.
I continued to raise my son, my husband and myself.
I didn’t do the greatest job.
The blackouts still happened.
Telling people at this juncture seemed pointless.
I’d had grand-Mal seizures on and off my whole life.
That is what we were all used to.
Any other episodes were just that, some weird episode.
I was confused and irritated.
My marriage deteriorated.
Our friendship did not.
Jason was everything I needed when I needed him.
He suffered my bull and I suffered his.
We both deserved a shot at happiness elsewhere.
Enter my dwarf.
He was my friend for years and had been diagnosed with Testicular Cancer at the age of 27.
He knew what sickness felt like.
I secretly had a crush on him from the day I met him.
He was a cabdriver, my little brother’s friend and interesting.
He was also a jerk.
He was kind-of perfect for me.
I loved him on sight.
He saved my life.
In January of 2013, I was in a car accident.
I shouldn’t have been driving.
A girl must do what she must.
I made poor choices.
I ended up with two broken ankles AND an undiagnosed DAVF.
I spent the next 3 years in a mind of extreme chaos, my own.
Neglect from the local medical facilities was criminal.
I presented myself to the ER several times.
Only to be sent away with little help and no referrals.
I used to work for the hospital, damn hard.
I gave them the remainder of my strength for youthful work.
This place that was now turning me away to die, was once an establishment I took pride in working for and with.
I still feel pride.
There are many excellent doctors and medical staff there.
There is however, one who deserves a little blast.
Just a little acknowledgement.
On September 5th, 2016, I was at an exercise class.
I wasn’t doing anything too strenuous.
I felt weak and tired.
I excused myself to go to the bathroom.
What happened afterwards is a blur.
I remember sitting down to relieve myself when this shooting, throbbing pain came.
It radiated from the top of my head down through my spine.
It felt like a hose had un-kinked.
I told the doctor exactly this.
My family had given the emergency room the impression that I had a seizure.
I knew I hadn’t.
My boyfriend had told the nurse I had taken a Tramadol.
I had a prescription.
I took one after the bathroom episode.
I took it because it alleviated some of my family members worry.
They had read that stopping taking Tramadol can cause seizures.
I acquiesced and took one.
I had previously weaned off of ALL pharmaceutical medications.
My admitting taking a narcotic changed the rooms overall vibe.
My boyfriend stating this fact quickly changed the nurse’s opinion of me, her judgement of me was palpable.
The doctor had a head CT ordered and done.
My brain is very scarred.
MRI imagining is needed to see the intricate workings of my vein network.
I told the doctor and the nurse this.
The doctor felt one was not necessary.
After my family was assured I was fine.
They left to get the car.
I was left with a doctor who no longer believed, if he ever had, he had a physically ill patient.
This man of medicine waited until we were alone to tell me he didn’t think I had a seizure.
I was excited.
I thought that someone was finally going to listen.
I know the difference between my grand-Mal seizures and my different types of “episodes.”
This was none of those.
My excitement turned to dismay and humiliation.
As soon as the curtain was closed he informed me that he believed I was a drug addict.
Where he got this idea from, I have no idea.
Doctors do become jaded, they have their reasons.
With what my family had stated, what I was stating, AND my extensive medical history with
seizures and head injury;
I was shocked.
I didn’t quite understand at first.
I soon accepted what he was saying.
He mocked me and stated, “I would refer you to a neurologist, but…” he trailed off there.
I started crying.
He responded with a shrug and a callous stare.
He made me apologize for wasting his time.
He discharged me.
I went home and gave up. I did nothing for a week but fear the toilet and another episode and cry from my bed. My dear cousin Johnny and Jeff both were unwilling to let me suffer any longer.
They knew me, they knew I was no drug seeking hypochondriac.
Johnny encouraged me to call the clinic he uses for a follow-up.
I have never been more thankful to any cousin in my life.
There was a physicians assistant Chris working who saved my life.
He took the time to listen to me and all of my symptoms.
He ran tests, scheduled follow-ups and got me my MRI.
What was found on those imaging films still shocks me.
I had an AVM.
My parents and myself were told that those do not grow back and they had gotten it all.
They had almost gotten it all, I had residual.
When I was in the car accident in 2013 causing a DAVF.
It began to fuse with the residual AVM.
This was just the oxygen rich source my little hanger-on has been craving.
A life force to feed from.
Over almost 3 years they fused together, weakening my blood vessels, taking oxygen rich blood from other organs, causing damage. Towards the end of my little leaches reign, my systems started to be affected. Infections all the time. My spine had even started moving completely to the left side of my body. The AVM monster was attempting to connect with my spine, what sort of crazy Cthulhu is this? There were strange diagnosis that made no sense, blanket treatments. I was weak and tired and ready to die by this point. No one knew.
I had to wait over a month for an appointment with a neurosurgeon.
I lived in total fear.
I was afraid to move.
I was terrified to go to the bathroom.
Terrified to do anything .
I met with the surgeon, Dr. Lawton. He was top in his field, the head even. He assured me he would have me fixed up, happy in no time.
Again, it was another wait.
My surgery was scheduled for October 27, 2016.
I had back to back surgeries scheduled.
One procedure was done through my groin. A tube was inserted and several aneurysms were glued for the craniotomy and AVM removal
the next day. I was informed that without this procedure I would more than likely bleed to death before
removal could happen.
So, yeah, let’s do this!
I woke up from surgery feeling relieved to be alive.
I couldn’t wait to feel again.
The doctor had assured me not only had he successfully removed my AVM, I would now be able to fully recover. Someday, with therapy, I could have back my long lost left side coordination.
That is simply not to be.
For reasons unknown to me, or any medical professional I have spoken to about this; after my craniotomy there was no drainage tube placed. Nothing to draw the excess fluid from my brain.
As a result, over two weeks after my surgery, I developed an acute subdural hematoma. I had no pain, no real warning other than the fluid that shot from the top of my head when I sat up.
The pressure had finally become too much.
I presented to the local hospital after a 30 minute phone call with the on call doctor for my surgeons office. The local facility was ill equipped and at least had the good sense to say it outright.
I was sent back to the big city and my “saviors.”
When I got to my room the on call doctor shook my hand and thanked me for saving my own life.
I had to have another brain surgery.
This time a Bur hole procedure is needed to save me.
I had far too much fluid on my brain, it had pushed my brain as far to the right as it could. The section pushed against my skull had died.
It had to be removed.
I now have some screws and a plate.
My left side is weaker.
My seizures are worse.
My quality of life is not as promised.
I’m currently working on trying to stay positive.
To not play the role of victim is hard sometimes.
I have conditions caused by conditions.
I have suffered neglect at the hands of medical professionals.
My family and myself.
I, with the help of those who truly care, saved my life.
It is a struggle and I fail to see my purpose sometimes.
I’m not giving up on me.
How can I when so many people still care that I’m in this crazy world.
I hope you made it all the way through this and found some peace.
Life will be harder.
Things worth fighting for are.
You’re not alone.
Everyone has a story.
I love you Stranger.
My fellow Warriors.
My friends in the fight.