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World traveler and adventurer

As a schoolgirl, Wieke became fascinated with the maps she saw in geography class — and over the years, she’s journeyed to many of the places that were intriguing mysteries to the schoolgirl: Ecuador… Tibet… Africa...Nepal.

When asked to choose her favorite destination or experience, Wieke responds, "I don’t know — there are so many! I’ve been snorkeling in Indonesia, and snorkeling opened up a whole new world we never see. And dancing in Africa — I loved that too! Or doing Tai Chi with people in Beijing."

When she speaks about the Himalayas, she turns poetic and sage-like: "That’s the most adventurous — when you can’t go back. In the Himalayas or the Mt. Everest base camp, you have to keep walking, walking, walking. Whatever happens, one can’t go back, and that’s interesting, you know? Even when I have seizures, I have to go forward." As she says in her poem, "Envisions":

a future bright as can be
full of vitality
lies before me
and I continue my way firmly …
until I descend again
in having a seizure.

Her trips have posed challenges because of the possibility of seizures, but her traveling companions have invariably assured her, "We don’t mind, Wieke." Until it happens! Some companions turn their backs, whilst others do not want her to miss a single magical experience. And for Wieke, travel is magical — she speaks of a "connectedness" with people of other cultures that can bring tears of joy, even without words being spoken. "When you can still understand each other without words, that’s very special."

Sportswoman

It’s the same in her native Holland. At her local sports centre, where Wieke is a regular, her classmates are reassuring and supportive. When she’s a little embarrassed to return to the school after having had a seizure, disturbing the class and feeling it can happen that evening again, everybody encourages her, "You have to come, Wieke! You’re a great example of how people can benefit from sports."

Just as with travel, Wieke finds wonder at the core of activity: "I love sports — the music, the excitement, the exercise. It makes you feel healthy, it makes you feel alive, it makes you feel that you have taken on a challenge. And I need all of those things."

Writer

Does the sense of wonder, of connectedness, of community arise only during travel or sports? "No," says Wieke, "I have it everywhere. In my hometown, I’m always organizing something, such as reading poetry."

With her friend Monica, Wieke has written In balans, uit balans (In Balance, Out of Balance), a compilation of 18 stories of Dutch women with epilepsy, the first of its kind in Holland. The book offers yet another glimpse of Wieke’s positive, empathetic spirit. This is not a medical book — it’s a look at women living with epilepsy, who are going out and living their lives the best they can.

"After we wrote this book, there were many people who contacted Monica and me, saying ‘I feel comfort from your book’ or ‘You saved my life,’ or ‘Now I know that what I feel isn’t wrong. You understand.’ So in all those ways...I’m connecting with people."

Wieke knows a lot about the power of empathy. After 30 years of learning about epilepsy, she has a ready answer when asked what a healthcare professional could learn from her book. "Listen!" she says without hesitation. "Listen to my knowledge, but also listen to the pain. A lot of neurologists don’t understand that it’s not only about the seizures. It’s about the pain you have — I don’t mean the physical pain, but the mental pain...the social issues, the mental issues such as forgetfulness, or just how big the impact can be on your life." There are women’s issues to take into account as well: "The role of hormones, the effects on the family."

Most important, neurologists need to treat people with epilepsy as people, not as patients or diseases. As Wieke puts it, "Neurologists always seem to ask, ‘How are your seizures?’, whereas I would encourage them to ask, ‘How are you?’ That is, ask how the person is doing, including seizures."

In speaking of the impact of epilepsy on her emotional center of the brain, Wieke says, "Imagine if you hurt your leg, and you did it again, and the next week you did it again. And each time you heal a little bit, you hurt it again. Every week, year after year after year. That was what it was like for me, each time I'd recover from a seizure only to have it happen again and again. For me: this feels much worse!"

Ambassador

In writing her book, Wieke’s biggest surprise was the fact that there are people who are ashamed of having epilepsy. "I never knew, because I just couldn’t imagine it, because why should you be ashamed of something that’s not your fault?"

What advice would she give to someone diagnosed with epilepsy who feels ashamed? Wieke is humble, saying "I’m not that good as an advisor. Most of the time I speak from my own experience." But she goes on to give excellent suggestions: "Get yourself informed properly, get yourself a good doctor, and of course, never be ashamed of it, because it’s not your fault — and never let anyone tell you it’s your fault. Look for a support group to feel stronger. And don’t think so much of what people will think of you, because everyone’s busy with their own life."

Wieke doesn’t minimize the impact of epilepsy — she speaks vividly about the effects of epilepsy on memory, on relationships, on work. It would be easy for her to stay at home, take it easy, and avoid difficult situations. But her advice to others with epilepsy is the same advice she herself lives by: "Do things. Go out. Have fun. Start moving. Start traveling. Because you never regret the things you did — but you can regret everything you failed to do out of fear."

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