The war in my head: coping with arteriovenous malformation after a brain haemorrhageBMJ 2010; 340 doi: http://dx.doi.org/10.1136/bmj.b5400 (Published 26 February 2010) Cite this as: BMJ 2010;340:b5400
- Linda Dauwerse, PhD student and patient1,
- T A Abma, associate professor 1,
- John G Wolbers, consultant neurosurgeon and senior lecturer2
- 1Medical Humanities Department, VU University Medical Centre, PO Box 7057, 1007 MB Amsterdam, Netherlands
- 2Department of Neurosurgery, Erasmus University Medical Centre, PO Box 2040, 3000 CA Rotterdam, Netherlands
- Correspondence to: L Dauwerse
- Accepted 12 November 2009
“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.
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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