Katharina’s Story

I want to start with saying that I do not remember most of what happened during the hospital stay, and what I know is what I read from the medical records and from people talking to me.

I started having a very dull headache that cause some pain but was manageable with over-the-counter pain meds.

One morning, I woke up, on the floor, not able to think clearly and with such a painful headache that I was only able to go and lay down on the sofa.

I was home alone with my then three-year-old daughter, and it was very difficult to take care of her.

My brain was so fogged up that it took me five hours to recognise someone’s name on my cell phone that I could call and I knew that they would take me to the hospital.

We went to the ER, and I was sent home after a few hours with a migraine diagnosis.

The pain medicine helped a little bit but when waking up the next morning it was back to being like the day before.

But this time I was not able to call my friend as my brain was not able to even think about anything. My friend called though and decided to take me back to the ER.

This time a doctor decided to admit me and do an MRI and spinal tap the following day. I was diagnosed with meningoencephalitis.

That night, while in the hospital, I had a seizure due to the brain swelling.

I don’t really have any memory from anything that happened at the hospital.

I was released after five to six days and went home with a PICC line and lots of follow-ups with my primary care physician, neurologist and another doctor but I don’t remember who that was.

While I was home alone I slept a lot and lost 20lb in three weeks. Because of all the medicine I was taking, I was unable to eat or even drink water without getting sick.

It was very difficult for me to speak. I was able to say words but they often made absolutely no sense. It took me a few weeks before I was able to go to a grocery store and not feel absolutely hopeless and overwhelmed.

My memory was also extremely bad. I had to ask multiple times where we were going while sitting in the car as I would almost forget right away.

It’s been almost two years since this happened, and even though I am pretty healthy and back driving and working, I am still having problems because of this.

My memory, even though it has improved a lot, sometimes fails me. My biggest issue is speech. I notice how I started to speak a little more slowly when I am talking about something I am not too familiar with to make sure I don’t use the wrong word.

Katharina and her daughter

I also usually don’t talk a lot to co-workers because of that. I often struggle at work because even though the task I am assigned is not difficult, my brain sometimes seems to have closed its doors and gone home for the day, making it impossible for me to finish the work in a timely manner or finish it at all without asking for help.

Another side-effect of the encephalitis is that I don’t care about ‘what ifs’ anymore. It’s a blessing and a curse.

My brain does not worry anymore about if I do that, this is what will/might happen. At this point, I have learned to live with the issues I have, and I have come to appreciate the life I have much more. It is not always easy, and there are times I really struggle with words and thinking, but I am alive and well enough to take care of myself and my daughter.