A dramatic recovery from autoimmune encephalitis and a birthday wish for her dad

December 20, 2016

Emily a few months prior to being hospitalized with autoimmune encephalitis.
Emily a few months prior to being hospitalized with autoimmune encephalitis.

A special thanks to Emily for guest blogging for AEA. Here is her story.

2015 was shaping up to be a great year.  I had moved to Charlotte, NC just over 2 years ago and bought my dream town-home 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 inexplicable pressure taking over.  I continued my morning routine, going to Starbucks, and then work, hoping like every other headache it would just subside throughout the day. 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.  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 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 seizers.  I woke up on Tuesday, and I was later moved out of the ICU and into the Neurological wing.

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 of you that 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” 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 and what happened.

Texts were flooding into 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, when, and why.

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 that gave me, and I think my parents as well, 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 and unconsciousness.

Autoimmune Encephalitis is an ongoing fight for some, and others can 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 and the weeks to follow 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.  But, 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.  She inspired me to finally, after a year, put my experience into words.

Emily on her first walk after being released from the hospital.
Emily on her first walk after being released from the hospital.

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!