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Herpes Simplex Encephalitis Lived Experience – Bruno’s Story

Later in the afternoon, I was taken to hospital. There, their first reaction was that I had taken some drugs or something, maybe because one of my pupils was fully dilated. I stayed in the hospital overnight, and they only suggested the next day that I might have some sort of virus of the central nervous system. By then, my left side was almost completely paralysed. No exact diagnosis was ever given, and I was told nothing was known about which virus affected the top of the spinal cord where the brain rests.

Bruno as a teenager

The name of my condition was encephalitis, and they were sure it was viral, but, despite several lumbar punctures, they could never be sure. I was also given some generic drugs against the herpes zoster virus. I stayed in hospital for about a month, and recuperated in terms of basic motor and mental skills rather quickly. However, the same cannot be said about all the more subtle skills. Before my illness, I used to be able to windsurf and cycle rather well; I had undertaken a 200-mile cycling trip the year before on my own. After my illness, these abilities were not even close to what they used to be, and neither were my mental abilities. In fact, the doctors often compared what had happened to me to a computer when you ripped all of the connections and wiring away.

Afterwards

After I got out of hospital, all these things had to be re-learnt almost from scratch, as things like balancing on a surfboard no longer became automatic. The same was also true for other mental activities; these had changed radically to a large extent and I could no longer simply remember everyday facts. As a result, my studying slowed down dramatically and I very rapidly went from being drawn to science in general to being drawn to just mathematics instead because everything has its logical sequence and order with less to remember.

In this slowing down, I lost one year at school because it was decided that the wisest thing would be to spread my final year and end of school exams over two years instead of one. This was still very challenging for me and I did not do particularly well in any of my subjects apart from mathematics. My inability to remember things very well meant that I went to university in London to study for a BSc in mathematics. The BSc was achieved, but again, it was not particularly good. However, it was good enough for me to carry on to MSc level and then also a PhD in mathematics. This meant I spent approximately 10 years in London, and, as time passed, things very gradually improved and I was able to explore more complicated things, hence the PhD.

Today

At present, I am working as an accelerator physicist in a lab in the north of Europe. I feel my illness has very much affected my character, and I am very much of an introvert but I do have a wife and two children. I still find it exceedingly difficult to remember small everyday facts, although, by now, this may be more due to age than anything else! I read books, for example, and I remember having read them and the opinion that I had of them but very few of the contents. I have a disproportionately high sense of empathy from my illness which I try to compensate for with an artificially callous attitude at times. I am persecuted by a strange sense of impending darkness and doom most of the time. However, by and large, I am happy.

Bruno today

Recommendations / suggestions

Now I feel fully recovered, apart from a slight hearing loss in one of my ears which is permanent I believe, and is due to the virus attacking the nerve, which does not grow back, rather than the protective sheath or myelin which can. If faced with the same or a similar illness to mine, my main recommendation is not to give up and never to let it and especially its consequences take over. I know it sounds trivial and obvious, and it may not be the case in general but it was certainly the case for me. The doctors noticed it as well and felt my determination played a vital role in my recovery. After you are out of hospital, it is still far from over, so prepare yourself, and those around you, for some deep character changes in yourself, and a period of roughly ten years before you can consider yourself truly well again, but it can be done. I am happy to help anyone in a similar position and can be contacted via comms@encephalitis.info.

Find more information on herpes simplex encephalitis virus here.

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Page Created: 11 December 2023
Last Modified: 8 August 2024
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