Intended for healthcare professionals

Practice A Patient’s Journey

The war in my head: coping with arteriovenous malformation after a brain haemorrhage

BMJ 2010; 340 doi: (Published 26 February 2010) Cite this as: BMJ 2010;340:b5400
  1. Linda Dauwerse, PhD student and patient1,
  2. T A Abma, associate professor 1,
  3. John G Wolbers, consultant neurosurgeon and senior lecturer2
  1. 1Medical Humanities Department, VU University Medical Centre, PO Box 7057, 1007 MB Amsterdam, Netherlands
  2. 2Department of Neurosurgery, Erasmus University Medical Centre, PO Box 2040, 3000 CA Rotterdam, Netherlands
  1. Correspondence to: L Dauwerse l.dauwerse{at}
  • Accepted 12 November 2009

Linda Dauwerse, 29, had a brain haemorrhage at 14. She describes her journey to recovery through extracts from the diary she kept

I am in hospital because I had a stroke. I wanted to write often—so many things happened—but couldn’t because I had to lie flat. Actually I do not realise how serious it was, because right now I feel much better.

I was 14 years old when I had a brain haemorrhage, and the following weeks were marked by mixed feelings. Sometimes I felt grateful and happy I was still alive. At other moments I felt sad about the loss of my daily routines, and scared. One night in hospital I was convinced I would die. The assistant physician came and sat next to me, which really helped. After admission the fear of dying returned regularly: “I do not want to die yet. Really I don’t. I love life so much. No, I cannot die yet. I am terrified of it. Terribly scared.” Death was frequently on my mind, and sometimes I felt anxious and lonely, but I did not talk about these feelings.

Unrealistic hope

Fortunately a doctor in Paris was able to treat me, promising a full recovery. He said that after embolisation the AVM (arteriovenous malformation) that had caused the brain haemorrhage would be gone. This made me feel immensely hopeful: “I will go to Paris tomorrow. Hopefully everything will turn out fine . . . .I must be healthy again.” However, the first embolisation was not completely successful. After the second one, a large part of the AVM was still there. So, my family and I felt disappointed and had to get used to the idea that the recovery might take longer. The whole process was frustrating: “It drives me …

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