Femke van Leeuwen Broertjes

What on earth is happening to me? Heavily pregnant and struck down by encephalitis.

It was 2009, and I was 37 weeks pregnant with my second child. I had a headache; the pain grew worse by the day, and I began to feel worse and worse. We thought it was just a mild flu. When I developed a high fever, we went to the GP. Normally we don’t rush to the GP, but I was pregnant. The GP advised us to wait and see. A day later, I suddenly got up in the middle of the night to take a shower. During the day, my in-laws were with me to babysit our 2.5-year-old daughter and told my husband that I sometimes got a little disoriented in the house. My husband came home, saw me trying to send a text message on my phone, and noticed that I couldn’t manage it. My mother and sister had spoken to me on the phone and thought I sounded a bit flat. When I then developed a fever again and started talking incoherently, the whole circus started. At the hospital, they did a scan, a lumbar puncture, and blood tests. The neurologist suspected a brain haemorrhage or herpes encephalitis. It turned out to be encephalitis caused by the Herpes Simplex Virus. It completely turned my life—and that of my family—upside down.

I could write a whole book about my recovery. I was literally lost everywhere; I had to relearn my way around my house, immediate surroundings, and town. I was completely disoriented. I couldn’t remember the rooms I was in. With a different light, a room could look completely unrecognizable to me. Every time, I thought I was sleeping in a different room. Sounds seemed to come in incredibly loud; I avoided crowded spaces and noise as much as possible. My energy was incredibly low—a completely different kind of fatigue than usual. I couldn’t manage a simple day routine; I really needed help with that.

I was ashamed of the things I couldn’t do. It made me very insecure, and I was in a horrible state of depression.

At the time, it was really hard for me that people had no idea what I was going through and didn’t understand me. The invisible aspect is so incredibly difficult. I couldn’t even put into words how I felt or what I needed. I felt lonely and misunderstood. It would have helped me so much if I’d known back then that I wasn’t the only one going through this and that things could get better. That’s why I’m so happy about the initiative of Jur Deitmers and his parents. The ItsME Foundation offers what so many people really need.

All in all, the recovery process took about two years. The whole process felt like top-level sport. You take three steps forward and then two back, or so it feels. It was a matter of balancing between two extremes: between acceptance and fighting, between patience and impatience, between rest and action, between resignation and anger, between doing it yourself and asking for help. It’s all necessary, and it’s practically impossible to maintain that balance. You make mistakes, and you have to accept that too.

After a year and a half, I started exercising again. First, I ran with the local running club. That went very well. I slowly built up my physical condition again. I also started playing volleyball again. That was difficult at first, because of the noise in the gym and because I didn’t know my position on the court well due to my disorientation. Later, that improved. Now I’ve been rowing for 9 years and have participated several times in the sprint triathlon in our town. Exercising has helped me feel confident again. It is and remains a miracle that I can do all this stuff again. I’m more than aware of the importance of being in good shape.

I was 31 when I developed encephalitis. At that age, adjacent parts of the brain can still take over functions fairly easily. I’ve learned to approach some things differently, using a different strategy so that I can still succeed. I’ve lost part of my visual memory when it comes to recognizing places and routes. But that’s not impossible to overcome, and with a little creativity, I can find my way.

It’s been 16 years now. I’ve been with Ralf for 24 years and am the proud mother of Sanne (18) and Bram (15). We can hardly imagine that the above story is about me. Against all odds, I have fully recovered and am back being my old self. I’ve been very lucky, but I’ve also had to work hard on my recovery. It wasn’t a walk in the park.

Once I was fully recovered, I wanted to help others fight their way out of this battle. With the help of a friend, I created my own website: www.watoverkomtmijnou.nl. You can also order my booklet “What’s Happening to Me?” on that site. In it, I share my frustrations and experiences. It’s available as an e-book for e-readers, phones, or laptops. For every booklet ordered, a donation goes to the ItsME Foundation. Never ever give up!

Never, ever give up!