Leon van den Bersselaar

Annemieke Ursinus tells the story of her husband Leon

It started in March 2004. Leon had severe headaches, so bad that he couldn’t tolerate daylight. All the curtains were kept closed. The GP saw nothing alarming: “Just take some paracetamol. ” But it only got worse. Within a few weeks, he was taking 8 paracetamol a day.

One day, I came home from work at lunchtime to pick up my car. Our five-month-old son Sam was upstairs crying hysterically. I ran to his room and found him alone in his crib, wearing only a diaper. When I came downstairs, I saw Leon lying on the couch. He was babbling incoherently, didn’t know his own name, didn’t know mine, and didn’t even know how our baby had gotten into bed. I could tell something was seriously wrong.

We went to the family doctor. He said I should take him to the hospital myself because Leon could still walk. That drive was a nightmare: Leon was confused next to me, I couldn’t communicate with him, he wouldn’t put on his seatbelt, and he was leaning against me while I had to drive, and our five-month-old son Sam was in the Maxi-Cosi in the back seat. I was completely on my own.

The first hospitalization
At the hospital, no one knew what was going on. Leon was given prednisone, improved a little, and was sent home after a few days—without a diagnose. But the headaches came back full force.

April 4, 2004 – his birthday
Leon walked to the front door to let his brother in. Nothing was wrong as he walked to the door, but in a split second it was: his brother noticed immediately—Leon’s mouth was hanging crooked. Back to the hospital, this time for more extensive testing. They weren’t looking for a specific illness but were ruling things out. They checked everything, including MS, AIDS, and a brain tumour. They didn’t know.

Meanwhile, Leon was extremely confused. He tried to go to his sick mother, who was in intensive care at another hospital in Eindhoven. He bites through his IV lines and fell out of bed. By then, he could no longer walk. The hospital asked me to sign a consent form to have him strapped down, for his own safety.

Our neurologist consulted a professor at Amsterdam UMC. Leon was taken by ambulance to Amsterdam. After countless tests, the diagnosis came: isolated cerebral vasculitis, an inflammation of the blood vessels in the brain.

Just in time
Leon had to start a heavy course of chemotherapy and prednisone, a long-term treatment—2.5 years. Fortunately, I realized in time that this treatment would make natural family expansion no longer possible. That wasn’t a priority at the time, but it was important for our future. The treatment was postponed so we could still have his sperm frozen.

After months in the hospital, first at the Amsterdam UMC and later closer to home in Eindhoven, Leon slowly recovered: walking with difficulty, speaking with difficulty, but making progress. He continued his rehabilitation in Blixembosch and was eventually even able to return to work as a teacher. We pretended life was back to normal, but the brain damage was more severe than we realized at that time.

2009 – It Returns
Five years later, on his birthday again, disaster struck once more. Leon’s mouth was hanging crooked; he collapsed right before our son’s eyes. At the hospital, they initially wanted to send us back to the GP – protocol. I refused, demanding that they read his file. Then everything suddenly went fast. It became clear that the disease had returned. More treatments. The damage that had already occurred in his brain had worsened, but even then, we didn’t see it—or didn’t want to see it.

2014 – my breaking point
After years of worry, treatments, and setbacks, I was at my breaking point. I told the neurologist, “Here you go, I’m done.” He had known us for ten years and wouldn’t give up. We were sent together to Blixembosch—Leon for therapy, me for a support group. There I learned an important lesson. Leon had already been told that he needed to rest every afternoon. He didn’t know why. We thought that was nonsense—he wasn’t even fifty yet!
In the support group, another partner shared that her husband slept every afternoon and that since then they’d had no more unpleasant discussions, fewer arguments, and less misunderstanding. It improved their lives. The psychiatrist explained that people with acquired brain injury (ABI) wake up in the morning with less energy and that this energy is recharged by resting in the afternoon. Since then, Leon has been sleeping for an hour and a half every afternoon. It really makes a difference.

His work—a blow
He could no longer work. The stimuli, the tempo—it was impossible. His employer had him sign a resignation, but Leon hadn’t understood it properly. He thought he was getting a “daddy day.” I only discovered the truth later, but it was too late to turn back. A years-long battle with the UWV began. His condition was unfamiliar to them. He was misjudged time and again. Eventually, after a series of procedures and emotional conversations, he was declared completely unfit for work. It was a mixed feeling: relief and loss. So young and already sidelined—it took us a long time to accept that.

Now—so many years later
Today, Leon is slowly declining, though he denies it himself. I can see it. To help him, in addition to my demanding 40-hour-a-week job, I also handle the care and upbringing of our son, the housework, and the shopping. On days when he doesn’t have day care program, he can walk the dog and unload the dishwasher. On other days, I do everything on my own.

Over the years, a lot has happened related to my husband’s brain condition. Our life is—and will never be—the same again.