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Ilse GoldAfter DischargeNeuroleptics: Haldol, Sigaperidol Today, Friday, February 8 1991, I was discharged from the madhouse. The previous 14 days were the most horrific of my life and I’m not in a good state at all right now. I can not rejoice at all at my regained freedom. I’m shaky, confused, restless and heavy, tired but not tired at the same time.
My clearest, but at the same time indefinable, feeling can best be compared with wonder and astonishment. But this feeling gets lost before I become ful- ly aware of it. Very briefly, I’m surprised at the half-finished picture on my ea- sel, and I’m half aware of the astounding idea that only a few weeks ago I had done something out of pure enjoyment, like painting a picture.
I find Gerda’s presence uncomfortable. Her presence is a necessary evil, but strangely enough I’m not ashamed of this feeling, although she is my sister. Even though I had reason to be grateful to her in the past, she is the one I have to thank for being locked up for two weeks and pumped full of all And I have to keep taking this Haldol. The asylum physician had given me all sorts of tablets for the next few days until my appointment with the psychia- trist. She had warned me about not taking them because that would be very dangerous. The dose must be reduced very slowly and I could not expect to recover very quickly. In fact, I’m in rather a bad state, and I almost look back with something like trust at this Dr. Hollmann, because so far she has been proven right in her prognosis. So I decide—even if unwillingly—to follow her instructions on taking the pills.
I asked my sister to get me a laxative from the pharmacy. I had become constipated during my stay in the madhouse and suddenly blame all my feel- ings of illness on this fact. I tell myself that everything will be much better when I can empty my bowels. That will be on Saturday evening when Gerda is leaving, finally! She has to be back at work on Monday, and thank heavens she lives at a relatively safe distance so I can at least have my peace until next weekend. But today is only Friday, and I feel desperately impatient and rest- less, and I’m wandering back and forth around my flat. I simply can not sit still and read for instance, until Gerda gets back with the pills.
She is barely back before she starts getting on my nerves again. She talks non-stop and keeps giving me unasked for advice: my constipation is caused by the Haldol, she explains and she wants to know why I had done nothing about it in the hospital. I just think: “Hospital! What hospital? I was in a mad- house, you idiot!” On no account should I stop taking the Haldol, I must put that out of my mind, she keeps insisting, although I hadn’t said anything of the sort. Now she repeats what I had heard this morning from Dr. Hollmann.
If Gerda only knew how much I would hate her for her idiotic chatter if I wasn’t so totally lacking in emotions. Her endless droning would be reason enough to throw all these bloody tablets at her feet out of protest and anger.
Again, another flutter of surprise that I don’t actually do it, that I don’t ex- plode and that I am really putting up with her tirade. But the strength of my feelings is not sufficient for real anger, objection and protest and is far too little to repress the fear of “what might happen if…” So I take the pills and swallow them right in front of Gerda. I even resist the desire to offer her By now it’s evening and we are watching television. I continue to work on a cover I’m knitting, a pretty normal activity for me while watching TV, but I’m incredibly awkward and act as if I had just learned to knit. And I can’t seem to sit comfortably and keep moving around in my armchair. I keep having to change the position of my body, and my legs in particular do not feel right wherever they are. Gerda watches me—furtively she thinks, but doesn’t dare say anything. I stand up and go into the kitchen because I can’t sit still any- more. When I come back straight away I’m asked: “What should be up?” is my irritable answer and again I slide around the chair making the leather of the armchair squeak. I don’t understand myself what is wrong with me and would love it if someone could explain it to me.
“Why are you perspiring so much?” is the next question from my sister, and after a while, “your forehead is wet.” “I’m not perspiring,” I snap at her, “you know I always had greasy skin.” She insists that the way I look is not normal and that I’m perspiring. I don’t care what she thinks. When I had seen myself in the mirror earlier on, I had thought that I looked dreadful, but right now I’m far more worried about not being able to sit still. And on top of that the feeling of being continually ob- served is enough to make me puke. She is so self-important in her role as my nurse. I can’t stand it anymore, whether it is this restlessness or Gerda’s presence, I don’t know and that’s not the point anyway. I take the consequen- ces and go to bed. That I don’t answer when Gerda calls after me and asks whether I’m alright and why am I going to bed so early. This is a small satis- faction for me and about the only pleasant feeling I have had all day.
I’m in the waiting room at the psychiatrist’s and I’m quite happy to be alone there, since I’m afraid that anyone could easily see how tortuous I find this waiting. I have already walked up and down several times and looked at all the pictures on the walls and I’m sure that I have had all of the magazines in my hands. However, I’m not nervous and restless out of fear of the psychiatrist and his treatment. In contrast I’m waiting for him as if he were my savior.
Every few seconds I look at the clock. The half hour I have waited seem like an eternity and just when I think “this is it, I can’t wait anymore,” the door opens and I’m called into the consulting room.
I’m asked how I am. “Very well,” I answer and tell him how pleased I am to be free of my sister because she has, after all, gone skiing and not cancelled and come to stay with me for a holiday as she had suggested. Proudly, I tell Dr. Niederländer that I succeeded in preventing this. He does not appear particularly pleased about this and for my taste shows far too much interest in where dear Gerda is skiing. I can’t satisfy his curiosity because I haven’t taken note of the address and why should I anyway. In any case, I’m sure that right now there is a card from Gerda with her address and telephone number on its way to me or is already in my letter box. Nevertheless, I wouldn’t dream of contacting her. The most I would do is to occasionally answer the phone in case she calls or the other relatives and friends whom she has doubtless in- structed to keep themselves or her up-to-date on my condition.
It was disgusting the day before yesterday—I had barely put the phone down after a long local call when a woman from the telephone company called to find out if I was alright as my sister and brother were worried that something might have happened to me and had called the phone company because my line had been engaged for a long time. Dr. Niederländer inter- rupted my thoughts by asking me if I had gained some distance to the events which had led to my “psychosis.” I made it clear to him that I had not been ill at the time I was committed, even if certain people claimed that I had very serious problems, but that now I had serious problems dealing with the vio- lence I had been subjected to by my sister and the doctors. Dr. Niederländer ignored what I said so I asked him if he knew about the brutal methods used by the police to get me out of my apartment and into the madhouse. Did he know that I had been handcuffed, and that I had been taken away completely naked. (This was because I had been in the shower when they broke into my apartment and I had refused their order to get dressed and accompany them.) Dr. Niederländer does not appear to be impressed and seems quite unin- terested. Yes, he had heard that the situation was quite turbulent, he mut- tered, and concentrated on the letter from his colleague Dr. Hollmann which I had handed to him. Since I had opened the letter as a matter of course, I know that apart from the strength of the Haldol dose, the letter also intimat- ed that I would probably not be able to work for several weeks.
“Well, I had better prescribe you drops rather than the tablets you taking now.
It will allow you to elegantly reduce the dose step-by-step.” That makes sense to me and the fact that Dr. Niederländer spoke so automatically of reducing makes me suddenly like him because reducing means of course that I soon won’t be taking anything at all. Impatiently and restlessly, I wait for him to calculate how many drops I have to take of the medication he is prescribing for me. He takes ages, arithmetic does not appear to be his strength. And the fact that he does not say anything and does not include me in his ruminations at all changes my posi- tive attitude towards him rapidly. Finally, he is finished and I’m given a sick note and a new appointment. I’m disappointed that I have to return within a few days and that my sick note only lasts until then. So I’m forced to go through the same unpleasant procedure very soon again.
At least he is not too curious about me, I think as I leave the practice, and I go to the nearest pharmacy for my prescription. When I go to pay, all my small change falls out of my purse and scatters across the floor. It is embar- rassing how noticeably my hands shake as I pick up the coins (a few custom- ers help me) and how awkward I am. It was the same at home yesterday when I tried to work on the picture, the half-finished tree, I had started. I couldn’t hold the brush steady so I gave up fairly quickly and looked for another occu- pation to rid myself of this continuous and tortuous agitation. But there was no occupation which made me feel better, so I had ended up spending the time from the early afternoon until going to bed early crying quietly and help- lessly. That’s the state I fell asleep in and the same state I woke up in. It is real- ly quite strange, I fall asleep very easily. Curiously enough this agitation which poisons and prevents almost everything else does not prevent me falling asleep. And when I wake up I do so abruptly, and I’m just as agitated and ner- vous as the evening before. I miss the half-asleep state of which I have such pleasant memories. That gentle dreaming into a sleeping state and the gently delayed waking up that I always try to drag out as long as possible. Now I wake up suddenly and it is just as tortuous to lie still as it is to sit still later. But it is not as if I wake up in the middle of the night or don’t get enough sleep, which makes me nervous. I’m awake punctually before seven every day after nine full hours, which is why I don’t understand why I feel so wiped out every morning. I should feel well since nothing occupied me or bothered me enough to stop me falling asleep. But nothing occupies me or bothers when I’m awake, I am capable of occupying myself. Purely mechanical things are best, apart from the fact that I’m very awkward and slow and everything is On the way to the bus stop I drop in at the baker’s. The shop assistant asks me three times before she gives me the sunflower loaf I had asked for. It is not the first time I notice that people have difficulty understanding me when I speak. I myself find my voice strange and unnatural. I’m relieved to get out of the shop. At least the embarrassment of the pharmacy has not been re- peated. I almost bump into a colleague from work. I notice the shock and distance with which she observes me as we greet and shake hands. Embar- rassment and inhibition on both our parts and the escape through seeming hurry: her husband is waiting in the car and I have to catch my bus.
I’m supposed to take 28 drops every evening. The new medication is called Sigaperidol (neuroleptic, active ingredient haloperidol) but it contains the same ac- tive ingredient as Haldol. After reading the information leaflet (I read it several times a day!) I finally know how my physical state is described by phy- sicians and scientists. There it is in black and white—and suddenly it clicks!—that I may experience restlessness, problems with my sight and stiff muscles. Dyskinesia (disturbances of movement) and Parkinson-like sym- ptoms can be alleviated by reducing the dose (I don’t have to be told twice), and more detailed information can be obtained in the scientific brochure. Dr.
Niederländer will surely give it to me when I go the next time.
I shall certainly start with the dose reduction. There is no question of taking more than twenty drops. That is less than the amount prescribed by Dr. Nie- derländer but is still double the standard therapeutic dose described in the leaflet. Nonetheless, I feel a flutter of fear at my actions since the warnings of the doctors are still ringing in my ears and repeated again and again by Gerda with such absolute dependability that the text had been become almost auto- matically part of my flesh and blood.
I observe myself very anxiously in those days but notice no difference, I don’t feel better or worse and I certainly do not feel well.
Nor does Dr. Niederländer notice any change in me; I say nothing to him during my next consultation of the fact that I am meanwhile only taking a third of the dose he has prescribed for me, and there is no reason for him to be suspicious. The possibility that someone might doubt the correctness of his therapy and not trust him blindly does not occur to him. But now I tell him about my symptoms, the agitation, the shaking and expect that he will confirm my own secret decision by suggesting an improvement to my state by reducing the dose. Way off the mark, Dr. Niederländer reacts completely differently: it is much too early to think of a reduction, and the dose I was tak- ing was a dose suitable for a small child. He explains to me that my shaking and the other symptoms were simply a result of my over-sensitivity. He brushed aside my fears of not being able to cope with my job as a secretary (because my handwriting and typing had become so clumsy and I took far too long) by saying that someone in a different job, a wood cutter for exam- ple—would not even notice these symptoms. I find it difficult to follow Dr.
Niederländer’s train of thought—should I perhaps retrain as a forester? Then I remember that I want to ask him whether he can give me the scientific My request was perhaps not quite proper, because right in the middle of my request this small, slight man past his best years spoke to me very angrily. He abused the pharmaceutical manufacturers who only upset patients with their in- formation and make the work of the doctors more difficult. These people were incompetent and irresponsible. He then asks whether I seriously think I’m capa- ble of understanding scientific information. His already hoarse voice threatens to fail him altogether. “Have you studied? Why do you think I spent so many years studying, so that any Tom, Dick or Harry could come along…?!” “Yes, why?” went through my head. “Perhaps so you Dr. Smartass can tell me what in your opinion I’m supposed not to understand,” I think, but of course do not dream of saying. With Haldol in the bloodstream you barely think (such thoughts), never mind actually saying them out loud. The fact that I can think at all and decide not to return to this quack is the result of the fact that—without the knowledge of the doctor—I had been taking practi- cally no Haldol for the past few days.
I wait silently until he writes me another sick note and I do not contradict him when he writes me a new prescription for haloperidol (I don’t need to collect it), and do not say that I have loads of the stuff at home. I suddenly feel superior to this man with whom I can deal, who is not going to give me an injection, this little dwarf. I almost feel sorry for him, not least because he has lost all authority over me with his outburst and his silly arguments. The previous weeks I was already very annoyed when I left the practice and had decided not to tell him any personal details.
This person had actually repeated and commented on things to me from my childhood and my private life which I had never spoken to him about. For example, he passed judgement on my relationships to my siblings and told me that, in contrast to these, I was the only one with a close relationship to my father which is why I had not been able to deal with his death last autumn.
This, and a few small things which had already surprised me before, led me to understand that he had been or still was in contact with my sister. When I questioned him and asked him how he knew these things, which I saw quite dif- ferently, he reacted as if he had been caught and swore that he had this informa- tion from no one other than me. I didn’t bother to contradict him and tel him that he was lying and that our conversations had only consisted of a few scraps and the arrangements for our next appointment, with the latter taking up the most time as he usually spent a great deal of time studying his empty diary.
On my way home I decide that this was my last visit to Dr. Niederländer.
And then I decided not to take one more drop of haloperidol or anything like it, no matter what happened. I had been written sick until Friday which meant that if I did not go back to him or go to another doctor, then I would have to go back to work in few days. I can’t risk being committed again be- cause I had not returned to work and not sent in a sick note, they would jump at the chance. It was a piece of luck that I only needed to work for one week and then had holidays, almost five weeks, the whole month of April. For a long time I have been dreaming about spending my holidays in my second home—the south of Spain. In recent years something had always happened to prevent it but this year everything seemed to be perfect—until now. I have to write today to the friends whose apartment I can use but I’m hardly capa- ble of dealing with everyday details, never mind organizing a long journey.
Anyway, why travel when I’m in no position to even look forward to it. There is no way that I want my Spanish friends and one-time colleagues to see me in my present state after ten years. Some anger, and in particular self-pity, comes over me. Even my holiday has to be sacrificed to these idiots (and by this I don’t mean psychiatric patients). Again I’m crying, also because I have no idea how things are supposed to go on and because I’m afraid.
Translation from the German by Christina White

Source: http://www.peter-lehmann-publishing.com/articles/others/pdf/ilse_gold.pdf

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