2015 was
shaping up to be a great year. I had
moved to Charlotte, NC just over 2 years ago and bought my dream townhome in
one of the most sought after neighborhoods.
I found my groove here and had a great group of friends that I
considered my southern family. Fall
football season had just started, and life was good.
I woke up
one morning in early November with a splitting headache. I couldn’t blink or move a muscle without an
unexplainable pressure taking over. I
continued my morning routine, going to Starbucks, and then work, hoping it
would just subside throughout the day like every other headache.
The next
morning when my alarm went off, I quickly realized I could barely even
physically roll my body over to shut off the piercing sound without my head
feeling like it was going to explode. I
called out of work sick for the first time in 2 years. It was Friday, and I had planned a big
tailgate at my new house for the Panthers/Packers game that Sunday. I invited 20+ people over and I was NOT going
to cancel this party. Looking back, it
was planning this tailgate that very well could have contributed to saving my
life.
Everything
after that morning was a blur. I had
conversations with friends over the next two days that, to this day, I cannot
recall. Sunday, November 8, 2015 was
here, and friends were texting and calling my phone to see what time the
tailgate would commence. I was lucky to
have some persistent friends who knew that it was very uncharacteristic of me
to not answer my phone, especially when I committed to plans. After hours of no response, they drove over
to my house, used the key that I had given them just weeks earlier for
‘emergencies’ and let themselves in.
They knocked on my bedroom door with no response, only to hear my dog
Chloe jumping up and scratching the door.
Upon entering, they found me
unconscious and unresponsive in my bed, seizing.
Fast forward
to Tuesday. I could barely make out the
shapes and shadows of multiple figures standing over me. I had no idea where I
was, how I got there, what day it was, let alone what year it was (I was later
told I said it was 1995 when asked). I
had tubes coming out of me, things tied to me, and people asking me questions
that I could not answer. I had been put
into a medically induced coma when I arrived at the ICU on Sunday in order to reduce
the swelling in my brain and stabilize my seizures. I woke up on Tuesday, and I was later moved
out of the ICU and into the Neurological wing of the hospital.
The next day,
a Neurologist came into my room to evaluate me.
He was asking me basic questions, such as the name of our President, and
simple math problems. I stared at him
blankly. Then, according to my dad, a
slight grin came over me. For those who know me well, I smile when I feel
awkward or uncomfortable. I could not
answer these simple questions, and everyone was looking at me. I knew the answers. I knew that I knew the answers, but I
couldn’t form them. My grin turned to
frustration after time. I snapped at the
doctor and said, “why don’t you quiz your interns?” while pointing at the
terrified faces of two medical students shadowing him, taking the attention off
of myself. At this point, I still didn’t
understand why I was there or what happened.
Texts were
flooding my phone. My room was filling
with flowers by the hour. Did something
happen that was a big deal here? I began
to get frustrated that I couldn’t keep up with what was going on around
me. I couldn’t remember who came to
visit me or when.
Later that
day, a Physical Therapist came by to start working on my walking and
balance. I started on a leash, taking a
couple steps at a time with someone standing on either side of me. The next day, I improved immensely. I started walking on my own and even had a
little friendly competition with my dad on who could balance on the lines on
the floor better.
I had been
receiving a daily IV treatment to ensure the swelling in my brain continued to
go down (I will have to look into what, exactly, I was given), and every day, I
was improving so quickly, the doctors were blown away. By Thursday, the doctors said I could go on
walks without the Physical Therapists and with my parents to the cafeteria and
around the hospital. Excited to make
moves, my dad and I went on a walk down the Neurological wing to practice my
balance. My dad took his eyes off of me
for one second, and there I went…straight into a chair that seemed to have
popped up out of nowhere in the hallway.
We laughed hysterically. It was this day that I was finally beginning
to fathom the seriousness of what had happened, and how lucky I was to be
recovering so quickly. It was that
thankfulness, and I think my parents as well, that gave me the ability to just
laugh for the first time after a stressful week.
Later in the
week, the sun came out, and it was a beautiful crisp fall day. My mom and I decided we needed some fresh
air. My mom had been sleeping next to me
every night, in a tiny reclining chair, and we both needed a change of
scenery. My nurse, who by the way was
absolutely amazing, gave me the go ahead to take a walk outside in between my
treatments. The entrance and exit of the hospital were guarded by security, and
I had multiple bright wristbands on that screamed “hospital patient, she should
not leave”. Of course, the guard stopped
me, figured out that I was an admitted patient, and immediately called someone
on his radio. My mom distracted him, and
snuck me out a side door around the corner.
We high fived each other after completing this mission and took a much
needed walk through the park to clear our heads. I wasn’t quite back to walking in a straight
line yet, and walking 10 feet felt as exhausting as running 10 miles, but I was
still improving.
One
whirlwind of a week after being admitted into the hospital unconscious, I was
going home! My speedy recovery was unheard of.
There was only one thing missing, and this was a diagnosis. I had been scanned and tested for everything
possible while I was there, but still no answers. What could attack my brain so quickly and out
of nowhere with almost no warning? After
leaving the hospital, I didn’t sleep for weeks.
Terrible nightmares consumed me; I woke up dripping in sweat every
night, unsure if, when I went to bed, I would wake up again.
Almost four
months later, I was lucky enough to get an appointment with a Doctor at one of
the nation’s best Neurological programs at Massachusetts General Hospital in Boston. After meeting with a couple of Neurologists
there, it was determined that I had Autoimmune Encephalitis brought on by Viral
Meningitis. Autoimmune Encephalitis is a
rare and uncommon disease in which your body attacks your brain instead of
attacking the bad viruses. When my body
attacked my brain, it caused swelling, which caused my severe headaches and
eventually led to seizures short term memory loss, and unconsciousness.
Autoimmune
Encephalitis is an ongoing fight for some, and others recover fairly quickly. I was lucky to have recovered so
quickly. Other than having the
occasional exhaustion and head pressure spells that last a week or so, I have
been able to look back on November 8, 2015 like it was a bad dream.
It has been
one year since this bad dream. Up until
this week, I did not consider myself a survivor in any way, shape, or
form. I was simply a young 26 year old
who had this unexpected and unexplainable event occur. And, up until this week, I had never met
anyone else diagnosed with AE.
Ironically, as this one-year mark was approaching, a mutual friend
introduced me to a young lady treated for AE at the same hospital as me, the
same year, her story so hauntingly similar to mine.
The
definition of survivor is “a person who survives, especially a person remaining
alive after an event in which others have died.” Not everyone with AE is lucky enough to have
that one persistent friend who knew to come looking for you, or that parent who
knew to check on you in the middle of the night. Timing was everything. I am a survivor of AE.
Did I
mention November 8th is my dad’s birthday?
Happy Birthday Dad, I love you!
