Through my eyes: Surviving encephalitis

Let me begin by saying that before I acquired sick, I went to school for social work before training to become a dental hygienist. I stayed there because I loved my job and my coworkers, and the amount of money was just what I needed to take care of my kids. I was 31 years old, and I was happy.

On September 7, 2018, I noticed that my hands were clammy and that I had really bad anxiety.

I left work early to go and start to see the doctor because I knew that something was wrong. He recommended that I visit a counselor and believed that I was experiencing “mental issues.”

I continued to see various doctors in various hospitals who prescribed me various anxiety medications that would not work. Then, 1 day, it got really bad.

I set out for a hospital 35 minutes from my home, in Alliance, Ohio. I got confused and couldn’t think it is, therefore i drove myself home and called my sister, who immediately found my home because I was talking erratically, in a manner that worried her.

I wasn’t making sense, so she drove me to the hospital, where I had a seizure. My sister called my mother, who was simply living in Cleveland at that time, and told her: “Get back now! Tisha is not talking right.”

My mother dropped what she was doing, without even packing any clothes, and she and her husband, Larry, jumped on the highway. From what my mother informs me, a healthcare facility in Alliance had already sent me to a hospital in Canton, Ohio.

Looking for the problem

When my mother arrived, I wasn’t making any sense, wouldn’t eat, and kept trying to leave the area. A doctor came and asked whether I had a history of mental health issues.

My mother replied: “No. There is nothing wrong with her mind. Something is overtaking my daughter, I simply don’t know what it really is.” At that time, I had another seizure, which put me in a coma.

Out of this point on, I only know very well what I’ve been told, as I was totally unconscious.

A health care provider announced that I needed to be placed on life support to survive, and with this news, my whole family’s hearts were broken. My mother felt helpless, watching me lying in a healthcare facility bed and realizing that there was nothing that she could do about any of it.

I had a series of tests. The doctors told my children 99 things that I didn’t have, nonetheless they couldn’t tell them what I did so have.

Then, on September 17, 2018, I was moved to another hospital, where they diagnosed me with anti-NMDA receptor encephalitis, a rare autoimmune disease that can attack the brain. It is the same disease featured in the book and Netflix movie Brain on Fire.

While I was at the infirmary, in Cleveland, I had a tracheostomy to greatly help me breathe, and surgeons removed one of my ovaries in the hope that it would help me progress.

I was there until October 29, 2018, and I was moved to a nursing home in Boardman, a suburb of Youngstown, Ohio, which was closer to my children. My mother says she felt like nothing had been done right. She was frustrated and scared.

Refusing to stop

When my mom made a decision to move me to some other hospital, the nursing home officials informed her that I was brain-dead. They informed her she should “pull the plug.”

But my mom refused and told them to take me to another neurologist, who told my mom, “She’s not brain-dead.”

That’s when my mom moved me to The Ohio State University Wexner INFIRMARY, in Columbus, Ohio - on December 6, 2018. While all of this was going on, I was still in a coma. I couldn’t communicate at all.

My mother was comfortable with me coming to this hospital for the reason that team of doctors and nurses done me day and night.

They gave me immunosuppressant drugs and steroids to attempt to treat the encephalitis, and they gave me treatments, including electroconvulsive remedy and vagal nerve stimulation, to avoid the multiple seizures that I was having each day.

While I was there, surgeons took out my other ovary. I later discovered that abnormal tumor cells had likely caused my own body to mount the immune response that affected my brain and caused the encephalitis.

I was having 20 seizures a day for six months, and the doctors told my mother:

“We don’t know what she’s going to end up like when she wakes up because her seizures should have been looked after in the past.”

I woke through to April 7, 2019. I recall feeling really cold and alone. My mother says that it had been the happiest day of her life. But I still faced an extended, difficult recovery.

After greater than a month, on, may 11, 2019, I moved to the Dodd Rehabilitation Hospital at Ohio State’s Wexner INFIRMARY.

I had to learn how to eat and use my hands. I had to discover how to walk yet again. The therapists worked with me 3 x a day. Then I moved to a nursing home in Massillon, Ohio, where therapists continued to utilize me.

On August 10, 2019, my mother and her husband finally brought me home. They moved out of their house and moved in with me to greatly help with bills in order that the kids could stay in their rooms.

When I came home, it had been very difficult for my two kids. I had lost almost a year of my life, yet life had gone on without me. My kids had learned how exactly to live without me.

These were very mature and older now, so when I came home, they were very distant and afraid of me. Slowly, I had to regain their love and trust. And today they have to discover how to live with me again. But we’re getting close again, and they’re trusting me.

I would like to give thanks to all of the doctors at The Ohio State University Wexner INFIRMARY who never quit on me.

I was lucky that I had a good advocate - my mother - who also never quit on me.

Now I know the importance of watching my own body and seeking medical help if something feels wrong.

Since I’ve been home, I’ve continued with more outpatient rehabilitation. I still head to my many doctor appointments and take my meds. I eat by myself and I don’t use any device to walk. I’m moody at times, but that will progress with time. My entire life is just about normal, generally, and I hope to return to work soon.

By using my family, I’ll have the desired effect.