Wednesday, June 11, 2014

Confessions of a research object

It wasn't an experiment. I don't know where I picked up the bug that started it all, but I had been unusually active that autumn, working out, studying hard, living in an old, cold building and eating cheaply and badly. I was a skinny, poor student in a cold rainy city, and while I considered it a good life, my body didn't have the resources needed to fight the bug when it reached me.

We were planning to go away for a few days, but we had to give up that thought, because I was throwing up and had a fever. When my boyfriend - now husband - came back from the university, I was weak, had fever fantasies and spots. I couldn't remember to have had measles, so we assumed that was it, and we settled down to wait for it to pass. At some point during the night, I got a headache that felt like it was about to kill me. I managed to make my boyfriend go call a doctor. This was before cell-phones, and even before it was common for a poor student to have a phone at home, so he walked to the nearest phone-booth and called a doctor.

The doctor was there almost before him, came in, looked at me, and immediately started banging on the neighbour's door to borrow their phone. Yes, doctors didn't have cellphones either. Three minutes later I was on a stretcher in an ambulance, on the way to the hospital. Eight minutes later they were hooking me up to just about everything. Fifteen minutes later I was in a coma.

I don't know what happened for the next two days. I am told I fought the doctors and nurses and had to be restrained, or I'd pull the needles out of my body. I am told they paraded entire classes of medical students past me to see and take note of my symptoms, threatening the students that if they ever ignored such, they could just hand in their licenses right then and there. They tapped as much blood from me as they safely could, for diagnosis and study. When I finally woke up I was in a strange room, black and blue and hurting from the amount of needles and the harsh medication that had hit my veins, and there was a nurse stationed by my side in case something happened. I was alive, but nobody really knew how alive I was yet.

I was not well. Mainly, I didn't notice what I was saying. I would think one thing and say another. To this day I have a slight case of aphasia, of not having the right word, of feeling language slip away from me. Or maybe I don't, perhaps I am just more aware of it now, after that experience. I can fake it well enough, it just means I have to double-check if I want to lecture. I overprepare, just to make sure all the words are there, and I know what they mean. They may be gone in a moment's notice, to return at odd times.

But I healed up, slowly. I was young, 22 years old, fit and strong after all. I did lose some hearing, but not enough to be a problem in everyday life. I did however get half a year worth of study wiped, which hit me hard during next term's exam. I hadn't known that it was lost, and so I hadn't known to go back and repeat it. For the first month after I was not allowed to focus. I couldn't read, watch television, listen to the radio. I went home to my parents, walked the dog, rested, learned to eat again, had involved and silly conversations with my boyfriend.

Most of all though, I was cherishing being alive. After I was out of isolation and moved to another room in the hospital, a doctor came in, sat down in the chair next to me and grinned. "You are born again," he told me. "You should be dead. But you live. This is a whole new life for you." That man was dr Alfred Halstensen, at the time working on his Ph D on meningococcal disease. For the next couple of years he kept tapping as much blood as he safely could when ever he summoned me to the hospital.

I was one of the few that autumn of 1983 who survived meningitis at Haukeland Hospital, and I was an adult who could describe carefully what had happened, and who had been strong enough to insist on medical attention before it was too late. I got a spot on his graph for his Ph. D. all to myself, as the 100% survivor of being admitted in the middle of the night, and his plan for all that blood was to use it in the effort to create a vaccine. Today there is a vaccine against some types of meningitis. It isn't one of the mandatory vaccines, but it is used to protect people in cases when epidemics are about to break out. With a disease that had, at the time, more than a 50% mortality rate, and which also tends to create mini-epidemics in otherwise healthy communities, you want that protection if there is a case at a pre-school or a military camp near you.

Now, a vaccine resister could use parts of my story to say that it's healthy for the body to battle disease. For years after that very close brush with death, I didn't even get a sore throath. My immune system was working overtime to keep me healthy, something dr Halstensen had said would happen. That vaccine resister can sadly not tell that to another Torill. At about the same time as I battled meningitis and kind of won, in another hospital another woman my age, with the same name, lost. The mortality rate was 50%. For once I was on the right side of those percentages.

This event changed my life in a myriad different ways, some to the better, some to the worse. I suspect quite a few health issues can be traced back to the enormous doses of antibiotics they used to save my life. They claimed to have "whitewashed" my body, killed all bacteria they could, to make sure they got the ones that were killing me. That is not only a good thing, no matter what a miracle modern antibiotics are. The alternative is much worse though. On the up side, I lost the fear of death. I am on my second life. How many people get a second chance? I walk through life with that as a backdrop: Every moment I have here is a miracle - a miracle of modern science. When things get dark and dreary, I consider the alternative, and enjoy the fact that I am actually here, feeling angry, frustrated or depressed. When things are bright they are twice as bright, just because I am here to experience it.

The people who resist vaccines can never have been on that side of life - over the line to death, and then dragged back by expertice and drugs. They can never have felt the extreme pain, the pain that made me wish I was dead, if the headache would just end, the pain that made me kick and fight and finally black out into a two-day coma. I don't ever want another person to feel that, to experience that. I would have given dr Halstensen and the research crew at the hospital all the blood he asked for, without much thought of personal safety, to make certain that no child would ever need to feel the pain I felt that night. Luckily he was a responsible professional, an ethical researcher, and I was protected, informed and educated through the process.

I am writing this story because of the anti-vaccination movement. They are using emotional arguments against rational arguments, using fear and pictures of babies to reach hearts, while the rational arguments of scientists aim for the heads. But where do the vaccines come from? From people like me, the blood of survivors of bitter battles, living despite the odds to become a lover, a mother, a wife, a grandmother, a scholar, a researcher. I am both heart and head, and both parts of me appreciate being alive, thanks to the doctors that work to develop vaccines to save the world from the pain I went through, the pain that made it possible for me to be of some, tiny little bit of help.

Wednesday, June 04, 2014

Dark Play in a book!

Finally two years after the Nordic Digra conference where the idea was conceived, our book project has come to the point where we have a publisher and a date for finalising it. I am talking about the project which up to this point was "Dark Play: Problematic Content in Playful Environments", and now is The Dark Side of Game Play: Controversial Issues in Playful Environments, Editors Torill Elvira Mortensen, Jonas Linderoth and Ashley M. L. Brown, and to be published at Routledge, most likely in 2015.

After a painful wait and a few adjustments, we are putting the physical signatures on actual paper next week, and from then on it's just a lot of work.

My first job as an editor for a book, although not my first realised book idea, it feels incredibly nice to have been able to bring it this far, and I am looking forwards to continue working with Jonas and Ashley until it's all in the box. Fun, fun, and then some fun!