Emily Gavigan’s AE Story

It was almost exactly ten years ago that I rushed home from a coffee shop, paranoid and terrified, and my journey with autoimmune encephalitis began. A college sophomore, I ended up in the ER and then a psychiatric ward, eventually “diagnosed” with Psychosis: Unknown.

There have been a lot of unknowns along the way. My primary concern at the time was when could I go back to school? I desperately craved a normal life. After almost two months of inpatient hospitals, I was enrolled in a day program for adults – the farthest thing from normal for me. I did move back to school that fall semester. No longer paranoid, I was weighed down by a cocktail of psych meds. Daily life was like pushing through wet sand – heavy and hard.

For my parents, every day was an unknown. They worried about what would happen to me if I stopped taking my meds; if I would ever graduate or have a normal life, since my psychiatrist seemed convinced that I wouldn’t.

And then one day, my body decided it had enough of this mistreatment and rebelled against me. I began slurring my words and lost basic motor functions. The right side of my face drooped – eventually I was unable to walk or even speak. I was diagnosed (or misdiagnosed, we now know) with Multiple Sclerosis, which left us wondering what my future would be like as the disease progressed. I didn’t respond to the treatment and grew less responsive and less capable of doing anything.

My parents drove me to a local ER, where doctors checked me in and immediately started tests. These doctors admitted something everyone feared – they didn’t know what was wrong with me. A few days later, a helicopter flew me to the University of Pennsylvania, where hopefully they would have an answer.

Weeks went by – I was in such critical condition that I couldn’t even be tested for Anti-NMDA Receptor Encephalitis, although that’s what everyone suspected. A grand mal seizure left me on a ventilator, unable to breathe on my own for almost a week. Even after I received a diagnosis and began treatment, my parents went to sleep every night not knowing what to expect the next day. I went to sleep afraid and alone in a hospital. I was there for two and a half months.

But I recovered; worked hard at physical, occupational, and speech therapy; and went on to graduate with a double major and then my Master’s degree. I started a full-time job at a pharmaceutical company and became a certified yoga teacher. It was a long, hard-fought journey, but I’m back.

So if everything is back to normal, how did autoimmune encephalitis really affect my life? I learned a lot about community. My family and friends supported my parents and me the entire way. They put themselves in uncomfortable situations, traveled hours to spend their weekends in a tiny hospital room, and did whatever they could to make our time in the hospital a little more bearable. They taught me how to act when someone you love is in need.

I learned how truly strong I am. I was able to let go of the anger and anxiety of losing over a year of my life. Now I accept a problem and ask what I can do to move forward and get beyond it. I don’t waste time on things I can’t change.

I have met a beautiful group of survivors who support one another. I discovered the power of my voice and how to use it in awareness for this disease. My family is closer than ever – our faith is strong, our empathy is ever-present, and we know we can get through anything. I’m grateful for the twists of fate that got me to the right place at the right time. And I know how to face the unknown.