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Archive for September, 2008

I feel pretty much ashamed of the fact that I haven’t written on this blog about the Dutch isolation cell controversy that’s arisen over the past two weeks, even though I did blog about it extensively on my Dutch healthcare blog. Not that it wasn’t an issue before – it’s been known forever that, in the Netherlands, psychiatric patients are put into solitary confinement far more often than in neighboring countries -, but the recent death of a patient locked up in an isolation cell and the suicide of another patient in the same clinic, sparked a lot of media coverage on living conditions and quality of care in psychiatric hospitals in general and isolation rooms in particular.

One significant problem is that there is not enough staff and staff are underqualified. When I mentioned it to a nurse, he denied it, but I’ve seen an alarming increase in time-out uses since we’ve been structurally understaffed. One nurse told me, when I asked whether my own time-out policy could be terminated, that time-out was needed “if you need more care than we can provide”. Oh well, does that say something about my mental state or about your staffing? The time-ut policy was terminated, but one never knows for how long.

Another issue is that people in isolation rooms cannot be supervised adequtely if there’s not enough staffing. When the nurses don’t have the time to respond to every call in a timely manner, or to check on the patient regularly, it’s no wonder that health or safety issues may go unnoticed.

But another part of the story is really an attitude problem. Isolation should not, and cannot legally be used as punishment, but that doesn’t mean that it won’t happen. It is, actually, only allowed to prevent or avert a situation where the patient causes a threat to himself, other patients or staff. Since when is nagging at other patients or staff, talking to oneself in an irritable manner, or slamming a door (one of my own supposed reasons for time-out), dangerous? Obviously it is not appropriate, but “inappropriate” is not the same as “dangerous”. And what in the world does a time-out policy do about someone “wandering orientationlessly” outside, as I’m reported to have done last June and which was used as the excuse for re-introducing the time-out policy. I used to think that my doctors were always right when they talked about “safety” and “danger” and I must have a really screwed conception of these terms. Now my understanding may indeed be somewhat screwed, but absolutely not in the huge way that my time-out policies have gotten me to think. And if my doctors ever read this and think I’m seriously mistaken, then finally *explain* to me why I am dangerous, and don’t dismiss the matter with an authoritarian “No arguing”.

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No More Future

A few months ago, the theme for the Disability Blog Carnival was something with end-of-life and spirituality. I had at the time planned on writing an entry about my issues with believing I might die before the end of 2008, but I didn’t end up doing so. However, the issue is still pretty pervasive in my thoughts at this moment, and is complicating my future planning quite a bit. So now that “the future” is the theme for the current Blog Carnival, I think I have to write about it.

“The future” has always been a significant theme in my thoughts, ever since I ended up in crisis and was hospitalized psychiatrically in late 2007. Actually, it’s the only reason other people can give me to actually not give up entirely. Life with my particular set of circumstances, including disabilities, just isn’t quite enjoyable, and I don’t know how to make it enjoyable. “It will get better once we’ve figured out placement,” they say. “You’re still young, you have plenty of time.” “Your placement is ‘custom-made’ and that takes time. Please be patient.” And the list goes on. It all signals one thing, whether that is intentional or not: Your current state doesn’t matter. But all this trying to make me optimistic by telling me that the future will be better, presumes one thing: that I have a future in the first place.

My worries about dying young started in the summer of 2007, one or two months before I moved to Nijmegen. I’ve had some degree of health anxiety forever, but it got out-of-hand when I moved to Nijmegen, to the point where I feared dying on Friday night and not being found till Monday, and therefore asked my support worker to call me during the week-end to make sure I was okay. I also feared longer-term health risks: cellphone use that is alleged to increase one’s Alzheimer’s and brain tumor risk, asbestos (I used to own a stone that is said to be a form of asbestos, but it’s allegedly relatively harmless because it doesn’t have fibers on it) that causes a particular type of lung cancer, health risks from my relatively unhealthy diet, etc.

I was hospitalized with suicidal thoughts and, by this time, the fears of sudden death had gone – after all, it’s exactly what I “wanted” then -, and, if they were there, I was quite able to calm myself, knowing that there are always nurses here. But the longer-term health fears stayed and became worse and more concrete. By January, I had a very concrete belief that I was going to die shortly – but I already survived my first supposed date of death, cause that was sometime in July. My current “pick” is sometime in November. Please note: these are not suicidal thoughts – in fact, the increase in my thoughts about dying in 2008 paralleled a decrease in suicidal thoughts -, but thoughts that I would die of a serious illness like cancer or heart disease, or sometimes an accident. And the worst is, I can’t soothe myself by inventing some (compulsive) habits (like checking if the central heating is off and window open at least thirty times if I fear dying of carbon monoxide poisoning, which I did at home – not that I would promote OCD’ish behavior, but), and even making lifestyle changes, isn’t going to prevent me from getting a disease in 2008, if I’ve already been programmed to get one, cause that is not how lifestyle-induced diseases work. You know, I just might have ruined my body with my bad lifestyle, and it just might be taking revenge on me one of these months. I feel guilty and worried, but that’s not going to change anything. I do have some physical health concerns, which might or might not be true medical problems (I am familiar with getting stress-related health problems, but usually they don’t last for more than a few months), but I fear mentioning them because I just might be a hypochondriac (ie. never going to be taken seriously anymore), and then I fear not mentioning them, cause, well, just because you’re paranoid doesn’t mean they aren’t out to get you.

And here are the people in the hospital, almost all saying that I should look to the future and that it will get better eventually. They still don’t seem to realize how empty this message is after my having been here for ten months. One of my former classical culture teachers in high school once said that you can only be happy once in your entire lifetime, and that is NOW. And I begin to realize that the same thing goes for every other state of mind. My ward’s movement therapist is also pretty much into the “here and now” type of reasoning, and I like that. I have begun to do some yoga and other relaxation techniques to try to calm myself, but it’s still quite difficult to apply outside of therapy. I still find it extremely hard to get my mind off of worrying about my (lack of a) future and what might or might not happen – cause another bad thing is, it’s all not absolute. It’s not like: if I do this, I will die, and if I don’t, I will live. It’s just all unknown, and that scares me. And no, don’t say that this will go away when we’ve figured out placement, cause placement isn’t going to determine whether I will get a serious illness or not, and don’t say that fear of the unknown is understandable for an autistic, cause that’s not going to stop this stuff.

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