Autoimmune Encephalitis Lived Experience – Aliya’s Story

I was diagnosed with autoimmune encephalitis back in December, 2019.

I was a junior in college in Massachusetts studying psychology and chemistry, performing in the marching band, preparing for interviews, and hanging out with my friends like any other 20-year old. At the time I was also dealing with major depressive disorder for a while, but I knew I’d be okay because I was on SSRIs and had an amazing therapist.

Unexpectedly in November, I started to experience hypomanic episodes. I would go days without sleeping, talk so fast that people couldn’t understand me, chopped off more than 8 inches of my hair, and everyone noticed something was wrong including my friends from back home in New Jersey.

I quickly was diagnosed with bipolar 2 disorder and since I had a new diagnosis and treatment plan, everyone calmed down and I knew I’d be okay. That was until my roommate found me seizing in my room; I was immediately sent to the hospital with uncontrollable seizures, transferred to another hospital, put under a medically-induced coma, was on a forced medical leave from school, and was ultimately flown back to Philadelphia to continue my care closer to home. I woke up in a series of hallucinations, having almost no memories from the past three years, and limbs tied to a hospital bed with almost no voice to scream. I had to relearn how to eat, walk, talk, and many other activities that you normally wouldn’t even think about.

As a patient, I knew I was struggling already in the hospital and the end goal was to be discharged, however, what about life after hospitalization? I would have to relearn who I was, pick up right where I left off from in life, and assimilate to the social dynamics within my own friend groups and family. I didn’t want that new life, so I tried to jump out the window of my hospital room. Luckily, I was under the care of an amazing team of doctors, nurses, and therapists who caught me, literally, and supported me every step of the way. They gave me that second chance at life and soon enough, I learned to want it.

Not only was it a stressful experience for me, but also for my friends and family. After looking back, I feel as though they went through more turmoil than I did because they were there the whole time, and although my body was there too, I wasn’t. They were the ones who waited hours/days/weeks for me to wake up not knowing if the Aliya that was going to wake up would be the same Aliya they knew. They were the ones who had to sit me down and tell me stories about my own life and who I was. They were the ones who had to grieve over the person they knew before and get to know this new person who looked and sounded like Aliya, but just didn’t seem like her. I didn’t realize how much my family and friends went through until months after discharge, and I’m so thankful to have had them by my side and still do.

Although hospitalization was challenging, I think that the recovery period was the most strenuous part because, again, I was given this second life that I never asked for. I had to rebuild a new person physically, socially, academically, and psychologically with only pictures, stories, school work, and text messages as clues to figure out who I was. For so long I tried to revert back to the person I was prior to any of this by studying things such as the way I used to talk and the things I loved to do. Nevertheless, after months of trying and working with many people, I realized I’d never be that same person again and that it was okay. I knew at my core I was still me and having my friends, family, professors, and everyone else in my life stick around confirmed that. I knew some memories would come back, and most importantly I knew I’d make new and stronger memories in the future.

Now, after months of recovery and reflection, I’m so grateful to have been given this second chance at life. This second life is a gift and an opportunity to become a better person for my colleagues, my family, my friends, and myself. With this second chance, I decided to attend pharmacy school and earn a Doctorate in Pharmacy to give back to the medical community. I hope to pursue a residency specializing in neurology to work within neuro-pharmacy.

Thanks to the care teams I had, I know I’ll be okay. I grew stronger as a person, and it gave me a passion for the medical field to help others grow into their second lives as well.

To those still trying to adjust to their “second life,” it’s okay to admit not feeling okay. It’s also okay to feel like there isn’t a “second life,” or that you don’t see yourself adjusting to one. “Okay” doesn’t always mean “easy,” but “okay” can always be “possible.” Find your passions and delve into them. I didn’t even know I would end up in the medical field when I was pursuing my Bachelor’s Degree, but encephalitis pushed me toward pharmacy. Wherever your interests lie, let them lead you back to life—and an even better one at that.

Telling this story is always difficult as it brings back some terrible memories, but I’m happy to be able to tell it anyways and to have the chance to tell it through the Encephalitis Society. It not only reminds me of how far I’ve come, but I hope it helps others who are dealing with similar issues because one of the most reassuring things to know when you’re a patient is that you’re not alone, people will always support you, and things will be okay.

Special thank you to Penn Neurology, Baystate Medical Center, Cooley Dickinson Hospital, UMass Amherst Center for Counseling and Psychological Health, Total Family Solutions, The Encephalitis Society, and especially my friends and family for believing in me even when I didn’t.

Aliya

Find more information on the types of encephalitis here.