This is Part 10 of a story I'd love you to read. But please, please darling, start from the Part 1., here.
Part 10.
Home. To Safety
It was not only what happened in the hospital, but also all that happened afterwards. It would have been much, much easier to go back to normal, to try to forget everything and just… get on with it, if it had ended there. But it didn’t. I still carry the consequences. Which, for me, feels a bit too much in the fairness department. I am a theologian, and the concept of Theodicy (why bad things happens to good people) is one that we have had to dive deep into, but there is no definite answer in there to why is it, that it always seems to be the good that suffers, while the evil continues unaffected?
It’s the same question I have been wondering these past years; why it happened to me, if and why was it necessary? And why, why I still need to carry it all, while the authorities, public health care system, and the individual persons behind the authoritative façade they are so easily hiding into, can continue as they always do, shrugging it all off and forgetting it?
I am absolutely certain that the personnel of the neurological clinic do not have nightmares of what happened. I am certain that the doctors and the other personnel don’t feel they did anything wrong, and have happily forgotten all about it, like they had a general amnesia. For them it probably was one of thousands, for me it was something that I sincerely and fervently hope was one of the lifetime horrors.
I left the hospital after 8 long, long days. Me leaving the hospital didn’t stop them to continue with the twisted truths, though.
After the two neurologists (and half of the staff as an audience, violating unforgivably my privacy) had come to publicly tell me they had “reinterpreted your 2 years old ENMG results and decided you never had myasthenia” and gave me a psychiatric diagnosis instead, they told me I could choose to stay in hospital for several weeks in psychiatric rehab, or go home. I said I’d think about it. They said I needed to inform someone if I’d choose going home, so they could write an official paper “releasing me” from hospital.
After the congregation vanished from the room, I said to my husband that I needed to rest a bit, to be able to think clearly, and tried to sleep. When I couldn’t, we discussed and weighted the options; to go home and start slow healing process, or to continue this madness? It wasn’t a hard decision, in the end. I just wanted to go home.
But there were doctors nowhere to be seen and found, although I was told that there would be at least one to write the papers. Nurses tried to search any doctor, so I could be signed off officially, but none were present. Eventually, I signed some papers one kind nurse brought me and then I left. Afterwards it was mentioned in four (4) different medical reports that patient left the hospital without permission. I tried to get this corrected in my medical files, but even though the chief neurologist promised to do so, nobody actually ever corrected these. I guess it looks good for them, four times incorrectly mentioned that after everything, I simply broke the hospital rules and left.
After signing the papers, a kind nurse and my husband helped me to get dressed, my husband brought my wheelchair, and we left. On the way out, in the hospital lobby toilet, my husband helped me to restart my medical treatment. I drifted in and out on the way home and my husband practically carried me inside when we got home. He helped me straight into sitting in a shower chair in the middle of our bathroom, took off my clothes and gently showered me and after all those 8 days sweating it felt so blissful. With the help of my mother, they dressed me and helped me to our living room sofa. I remember lying there, hugging our children and never wanting to let go, and my heart beating and my brain whispering on repeat: you are safe, you are safe, you are safe. The slow recovering process started. I knew it would take time, but I had no idea it would take month after month, and that I’d still suffer from nightmares three years later. You can read my thoughts after getting home here:
The medical report that was written afterwards and sent to me, states that cancellation of the medication completed successfully.
I wouldn’t exactly choose the description “successfully”. Unless, of course, they meant they didn’t kill the patient. If a patient was able to walk, speak, eat, sit, write, see, wash her hair, even pee before the cancellation of the medicinal treatment, and after that wasn’t able to do one single thing in that list and left the hospital struggling to be conscious just to get out of there as quickly as humanly possible… Well. I wouldn’t, in any circumstances, describe it as a success. I’d go for catastrophic.
Call to Order.
I got a couple of phone calls from the hospital that evening, and the next day, too. First, I was called by a nurse who told me that the young, specialising doctor had prescribed heparin injections to prevent possible blood clots and that it was important I took those regularly if I stayed in bed. (I had had those injections in hospital, too.) Of course, my husband fetched the medicine from pharmacy immediately. Then, the specialising doctor called to tell the same thing. I think they wanted it to be documented that even I had “left without permission”, even after getting home, they still took care of my patient safety issues…
The next day, after a long, deliciously deep sleep, I was a tiny bit better. I could, for example, take the 10 steps necessary to go to bathroom, with the help of a rollator. The specialising doctor called again and asked how I was feeling and did I take the heparin injections. I told her I was just a bit better and could a) actually speak to her and b) walk to the bathroom with a rollator. She told me she called because there were a few things left unfinished. (Really, I thought, I would say actually a lot of things were unclear or unfinished.) She went through the ephedrine procedure, how they had prescribed a two-week dosing for me and I could fetch it from pharmacy. She reminded me of the heparin injections and advised when I could stop using them. And then… She told me that the chief neurologist had ordered her to call me and to inform me about my right as a patient, to choose the hospital or public health care place or district where I was “cared”. Couldn’t do it himself, clearly, to contact me and tell me. It was so much easier to order others to do it. Besides, like I told the doctor on the phone, I had no intention to switch my health care unit, I most certainly did not want them to get rid of me so easily.
One interesting detail that somehow is very fitting, is that they truly wanted me to test ephedrine. That they prescribed it for me for 2 weeks, after giving it to me in hospital. (After which, I was supposed to be a healthy person with no need of medication.) What I will never understand is, how is it possible that they denied me my medical treatment prescription that I was asking for, appealing to the fact that there is not enough evidence it works, but then wrote a prescription on the same basis, to see if it might work, for a medicine that in Finland is listed as special license medicine. (Finnish Medicines Agency Fimea supervises the pharmaceutical sector in Finland and there, in the list medicines needing special license from them, before a patient can buy it from a pharmacy, with their prescription, is ephedrine.) I think this is just one of those things making you think everything simply does not add up.
I did buy the prescribed ephedrine pills, so that nobody could say I did not take the offered help. It’s entirely different thing if I actually ate them or not. The jar is still unopened in my medicine box, after three years. Why? Because when they tested ephedrine on me in the hospital, the side effects were so much more evident than any actual benefits: a terrible headache and nausea, an unreal feeling like I had been drugged, tachycardia, and dizziness, but on the other hand I didn’t notice that many good sides. Maybe that I was able to eat myself in bed when the few minutes the effects were at their best?
I did, however, continue my original medical treatment, but I am sorry, I absolutely do not talk about it, I’m not that naïve. Let’s just say that day by day, month by month I slowly recovered to the level I was before the episode that turned out to be not only waste of everyone recourses, almost cost my health, and for years caused not only troubles but also nightmares, and a condition I suspect could be called a four-letter abbreviation.
Sympathy and Pastoral Care.
A month later I was required to go to the chief neurologist’s reception to talk about my… care? I could tell you a bit about the observations I made during that reception. If you remember, I told you I can see quite a lot more than maybe is comfortable, observing the eyes, the tiny gestures and expressions. I saw a lot, as I saw during my stay in the hospital. But although I’d love to analyse the fascinatingly changing attitudes and emotions or the expression of the eyes that I noticed during my stay in the hospital and in the reception, I decided not to go there. After all, it’d be not that hard to dig up the identity of the chief neurologist and it would not be a decent thing to do, to analyse such intimate issues of others. I just sum up and say that there were, all the time, some very mixed messages.
It was an interesting coincidence that it was the same day I had first an appointment with the chief psychiatrist of the hospital’s general psychiatric clinic, the one I had met a year ago and who had said when I was leaving that it was such a waste of resources, my visit, that I had no psychiatric problems whatsoever (and now I was there some 11 months later), and then, a few hours later an appointment with the chief neurologist. During the appointment the chief psychiatrist repeat repeated what was said a year ago, and said also wonderingly, what kind of papers should be needed that I won’t be sent there next year again, for no reason.
My husband accompanied me to the appointment with the chief neurologist. I most certainly did not want to go there alone. I remember that arriving at the clinic made me so sick I was certain I was going to vomit, and I had difficulties to breathe, I was really dizzy, my entire body screamed I needed to go out there, as fast as possible. That was the first real sign when I realised that there was something wrong. I had often joked, before the hospital episode, during the years trying to get help from the public health care that the only instance ever that could cause me mental problems would be public health care system. After the hospital episode, I have several times mentioned to health care professionals that the only episode, the only issue in my life causing psychological symptoms is this one hospital episode, caused by public health care. They always thought I was joking. Actually, I wasn’t. But I so was not going to tell anyone that I had constant, horrible nightmares, or that suddenly some incident from the hospital came into my mind and I couldn’t breathe, and I felt dizzy and upset and paralysed and sweaty. Or that I found it extremely difficult to even think about hospital, not to mention going in there ever again, which was hard to avoid as I needed to accompany two of our three children to their paediatric appointments in the very same hospital. Those visits were… hard. Or that every time someone started to talk about it, I thought I was going to faint. I did absolutely not want to talk about any of it. I was scared of pretty much anything and got huge frights even from the merest sudden noise or movement, my whole body was in some kind of an alarm mode all the time. And trying to pee… I mean, it hurt, it still hurts, after all the manhandling, but I still got flashbacks when I am in a toilet and feel like the walls starts to fall on me and I try to avoid public toilets as much as I can, and I need to concentrate on breathing and relaxing and calming, so I wouldn’t faint. Three years. For three years I haven’t been able to use a bathroom without problems. It’s a long time. I most certainly did not want to tell anyone I burst into tears without any reason, but at the same time completely numb. I consider myself extremely lucky to have a husband who had endless patience and always open arms, who listened to me, wiped my tears away, and comforted me. I would be a total wreck if I hadn’t had safe, supporting environment to slowly start healing. The feelings and reactions, symptoms if you wish, have somewhat diminished during the past years, but haven’t vanished and can suddenly jump up behind any corner, triggered by almost anything. I know now that this is something that has a name. I didn’t when I was visiting the hospital and the neurological clinic first time after my stay a month ago, and it was quite shocking experience. Well, in total, but because of those sudden, strange things going inside me, too.
The appointment was a strange experience, all in all. First, because I truly felt trapped and sick and wanted to get out as fast as possible and second, because the whole appointment was so surreal. We were sitting there, being extremely polite and well-mannered to each other, voices kept calm and down, everything oh, so civilized. Like nothing unordinary had happened a month ago. Maybe the only indication that something unordinary had happened was indeed the manners; countless instances had warned me beforehand that the unpredictability might cause some problems. Well, I’d say I had been forced to get very well acquainted with it already, but not during this appointment, no. You would not have suspected anything abnormal ever having happened. Except for some tiny details.
Right from the start the chief neurologist launched into an explanatory plea about the medical case summary written about my hospital stay. You see, I had waited and waited and waited for it to become visible on my digital healthcare database files. Of course, I wanted to see what was written down, what was left out, and most importantly, what was the diagnosis now casted upon me. It took a lot longer than in normal circumstances, but finally it was there, and I could read it, on the morning I had an appointment with one personnel of the hospital. I had read the case summary and printed it from web, and when the person took out a print and told me that here it finally was, the case summary, I told I already had it printed. They were confused, it should not have been possible, it was only half an hour ago or something that the chief neurologist had had the text accepted and signed. What was more, my printed text from my digital medical files and the one straight whisked from the neurological clinic were different. That is something that should not happen, ever. It is such a huge mistake that it’d cause immense problems for the public health care instance making such errors. But there they were, two different versions of the document. Now, in the reception, the chief neurologist clearly knew how grave an error it had been, as he explained in detail how and when and why it had happened. It sounded it was a completely unintentional error and there’s still no reasons for me to believe otherwise. People make mistakes, it’s natural and I never pursued it further.
When I wrote the above and tried to double-check the details and dates from my digital medical files, I noticed that it had happened again, something odd happening to my digital files. There are certain, relevant documents missing; there’s a gap in my files from the October 2017, when the hospital episode happened, to approx. a year onwards. The whole medical report of the appointment where the mistake in the document versions was mentioned is missing, along with some others. I phoned to the person who had wrote these documents, to check if this is normal and if there’d be, in the end, some kind of natural explanation to this. It isn’t and there isn’t. Luckily for me, I do have these, as well as other missing documents (like the ENMG results from 2015 that suddenly vanished from my files after reinterpretation) printed and filed. But it’s a cold comfort. I am so tired, so, so sick and tired of this all. How is it possible that even after 3 years I am experiencing oddities regarding my medical documents? When does it end? I cannot help but think that this isn’t normal.
But back to the appointment… I told the chief neurologist that I had visited the floor below in the psychiatric clinic the same day and told him what was said there. The text of that visit was not visible yet, and it was kind of descriptive and insulting at the same time that he didn’t believe what I told had happened but told me he would wait for the text and only then decide if it’d be necessary to pay attention to it.
Which brings us to one of the absurdities of the appointment. It turned out that the chief neurologist has no high opinion of his colleagues. I tried, once again, to remind him that there was, written in my medical files, that I had no psychiatric problems nor need for psychiatric care, and that in the same file it was said even that I clearly had natural, good adaptability skills. To my utter amusement and bemusement, the chief neurologist, a man of certain and respectable age, actually lifted his finger and circled it around his ear and snorted that psychiatrists and psychologists are all nuts anyway, so there’s no reason to listen to them. So, let me get this straight, I had just come from an appointment with a psychiatrist because this neurologist had ordered me to go there, and now he says it doesn’t matter what was the result because they were all nuts in there? Curiouser and curiouser, as Alice would say, and I, indeed, felt I had stepped into some weird parallel counter-Wonderland.
I felt so uncomfortable in the face of such a lack of respect for the colleagues, that I commented I had seen quite a few psychologists and psychiatrists during my studies, and I tried courteously comment that even if the description fitted perfectly to some, to most, it didn’t. You see, it might not be common knowledge, but theologians need to study psychology and psychiatry quite a lot (along with social ethics and social science and so on), and I had definitely had my share. Fascinating subject, but not quite like ancient pottery shreds. I explained that to the very confused looking chief neurologist and I could see it was a surprise clearly not welcomed. I had intruded inside some invisible territory borders without permission.
This was somewhat ironic, as soon it was, indeed me who was listening how hard it was to be a doctor when “patients manufacture complaints” and “there’s complaints coming in from the doors and windows” and I could not help thinking that would it be an option maybe, to treat the patients with the respect they were entitled to as humans, that it might ease the problem a bit. He told me how hard it was for him, when he told to patients their problems were only mental ones, and they did not accept it, but left the appointment slamming doors. During the month after my hospital episode, I had heard some interesting incidents happened in this very room, many of them ending when the chief neurologist was, in fact, the one leaving doors slamming. So, no pity points scored.
It took a good part of the appointment, his opening up about how hard and tragic it was, to be a neurologist. I sat there, hands in my lap, sitting as straight as I managed, tilting my head just a bit and thinking how absurd and surreal it was, this reverse casting. It felt I was, indeed, a theologian in pastoral care duty, listening.
I tried not to look at my husband and I knew he shared my feeling of absurd unreality of the situation. I couldn’t decide if I should cry or laugh. Here I was, after all the hospital episode horrors and instead of getting an explanation why, I had to sit and try to be emphatic to him, as it was so hard for him? It was pathetic after everything, really, and I most certainly did not feel emphatic. There was nothing to laugh about, but somehow my survival instincts got the better of me and I thought I could burst, trying to make sure I was only smiling politely, bit my tongue so hard it started to bleed, and I could see my husband was struggling not to laugh, too.
After we got this pastoral care moment dealt with, we discussed about some indifferent details like my future psychiatric care. I asked about the “Duacts” I had been given in the intensive care and explained why those capsules could not have been what I was told to them to be. He checked my files and checked some pharmacy databases and came to the same conclusion. I wasn’t given any Duact, but something else. He said it must have been an error. I still can hear it loud and clear in my head, he nonchalantly shrugging and saying that in hospital anyone can be given anything (“kelle vaan voidaan antaa mitä vaan”). First, I didn’t believe I had heard right, but a look to my husband and I knew I had. We stared each other and thought this cannot be happening. A specialist says in a hospital that any patient can, accidently or mistakenly, be given anything. Later, I have had several other medical personnel, specialists and chief doctors working in hospitals included, confirming that this is something that is absolutely not acceptable and that I should report it forward, it is a dangerous thing to say and a dangerous attitude to have in any position in hospital, let alone coming in from a mouth of a clinic’s chief doctor. Thus far, I haven’t reported it, though. It seems just one tiny grand of sand in an endless desert.
There was no mention during the appointment that there was nothing untoward happened during my stay, no indication that nothing was wrong from their part. But not only did I know I was treated badly and that there were even legally muddy parts, I also had asked for all my medical files and documents, all the log files, all the possible papers and documents and went through them all before the appointment. I had also discussed a with not only patient ombudsman, but also with several medical professionals. The general opinion was that there was so much muddiness that I needed to complain and bring action against the neurological clinic. I had no energy nor a starting point, though, and I wanted to wait and see what was said during this appointment.
I remembered how several doctors, males included, had actually cried and raged when I had told them what was happened in the hospital, how I was treated, what was done. I had told them about the Circus Show, about the reinterpretation of my ENMG results, about wiping off my myasthenia diagnosis, about the log file illegalities, about it all. I remembered how some of them had exclaimed I was treated as a public circus show piece of the health care district, my medical files ripped open here and there, my gynecological papers and all other files opened and read without not only permission, but also without any care relationship and legal reasons. Some had stared at me incredulously and repeatedly asked if I was not joking, a psychiatric diagnosis replacing my myasthenic one? What then, about my myasthenia gravis medication for the past few years, that would make them a huge malpractice? And what about the opinion of the chief psychiatrist, that didn’t count? (Later, when I told them about this appointment and how the chief neurologist had circled his finger and told his opinion of psychiatrists and psychologists, and how their opinion did not matter, they reacted just like I did: why, oh why then, had the chief neurologist told me to go there again, then, to get a professional opinion of a psychiatric, if he then would simply “wipe off the table with the opinion” as one aptly summarized it.) All this played in my head during the appointment. The vast contrast between my reality and the chief neurologist’s. It seemed we habited a different reality altogether.
I asked about the myasthenia diagnosis wiped off, wanting some very good explanation and reasoning, pointing out that it was not only one but two neurologists in this very same clinic that had taken it as a fact for the past couple of years and never hinted I could have psychiatric problems instead. He waved them off. He had an explanation ready. Not quite what I had expected, though. You see, I was too nice. Those neurologists had been afraid to tell me what they really thought and pretended instead to please me in order not to make me feel bad. I stared at him incredulously. So, two neurologists of the hospital of the public health care district had pretended I had a neurological diagnosis to please me? They had lied to me these couple of years and actually prescribed me medicines for a neurological illness, so that they would not make me feel bad? That they had known all along, but just did not want to tell me? I told the chief neurologist what disturbed me the most in this was that what he suggested as the explanation didn’t sound neither ethical nor professional, to lie to a patient for several years, to literally malpractice them with wrong kind of care, just because they thought the patient was too nice to be told the truth? That if you find out the patient has a cancer, do you or do you not tell them about it and direct them to the right kind of treatments, even if you knew this would upset them? The answer: it is so hard to be a neurologist. One more time I tried to kind of defend these other neurologists and asked did I understood this correctly, that not only the psychiatrist was wrong, but also the two neurologists were actually committed malpractice, that my ENMG results were taken out again and reinterpreted and now I did not have myasthenia gravis, because…? To my ears it sounded quite a hollow excuse of an explanation and reasoning. To shrug off several other specialists, and because he just had decided so? Yes, he confirmed, noticing nothing untoward.
I am still speechless.
Then he actually let it slip that they had had a heated argument with one of the other neurologists, who had said they didn’t believe I could have a psychiatric diagnosis, I simply did not fit into that box, and the chief neurologist continued that he must admit he was confused. I was so coherent, so calm, so well-mannered and well-behaving that I did not actually fit into the category of a psychiatric patient, just like the other neurologist had said. Said the chief neurologist of the neurological clinic, who just had explained to me that I had psychiatric diagnosis in the basis he had said so? He continued, that I was actually scary, because I was so nice and calm and well-mannered. That he was used to psychiatric patients being aggressive and slamming doors and there I was, just sitting and being so co-operative that it made him confused and scared. I could start seeing it was hard to him, indeed.
The appointment did not give me any answers, maybe just more questions and did nothing to ease the feeling that everything in the episode had not been as see-through plain and clear or correct as they might have been, if I had been just a normal patient and not an authority issue, as the chief neurologist had referred me to.
Eraser on Work.
I dutifully went the obligatory three times to see the psychologist and we chatted about this, that, crocuses, and aquarelle brands. The message was clear; “there’s no reason to make problems where there clearly isn’t” and that I have a remarkable inner adaptation system. The message got a bit blurred though, somewhere between the psychologist saying so to me in the reception and documenting the meetings to my medical files. I read from my medical files that they couldn’t actually say if I had or had not functional symptoms. I think I could write whole independent chapter about the meetings and the strange polarity in the medical report, but I just sum it up. I show the papers to medical personnel of different kinds, one had known me over ten years, some over five years, even to a psychologist and neuropsychologist of the neurological rehab center. All their reaction was incredulous and response fascinatingly identical – and one I had never thought of: phones are a convenient tool when you need to get a message through without leaving any records to medical files and psychologists are way lower in the picking line than for example, neurologists. There were several other cases when I was told something during the reception and then what I read from the medical files was the complete opposite. I do have recordings from most of these receptions, so the difference would be easily proved.
Just to make sure I got an independent and neutral opinion on the case, I went to see a private neurologist specialized in myasthenia gravis, the one who had seen me several times in the neurological rehab center, long before the hospital incident (and afterwards, too). The message was clear. Even if the rights of one specialist to take private patients had been restricted, it should be incredibly clear it shouldn’t have effect on any patients diagnoses. “Them using eraser to your diagnosis has no real-life effect on your myasthenia” he said. The same message was repeated the next year in the neurological rehab, by the doctors, physiotherapists, psychologist & neuropsychologists, and other medical personnel, all who had read my medical files, including all the things that was written about my stay at the hospital, along with the appointments with the psychologist and psychiatrist.
I happened to see some medical personnel who were participants in the hospital events off- duty. Couple of them I thanked about how they had been so kind among all the others. The reaction was the same each time. Tears in their eyes they explained to me how difficult it had been, to witness it all, to be there and see how I was treated, and how I was staged as a mental case, how they had wondered how I was coping after getting home, and how hard it was, when they could not talk about it with anyone. It simply confirmed my instincts to be true, that something had been wrong in there, and if the personnel (some of them) was reacting like this, too, it meant that something, indeed had been immensely wrong.
I had an appointment the next summer following my hospital episode, with the neurologist who had been responsible for my care prior to the hospital stay, as I needed a doctor’s certificate to apply renewal of my temporary disability pension and other social benefits. It was a strange and surreal appointment, too, the neurologist was tense and terse and didn’t look me or my husband in the eye once. The neurologist refused to talk about my change of diagnosis but wrote a bit softer version of a psychiatric diagnosis in my papers. This person had been kind to me earlier years, the first doctor in the special health care thoroughly reading my papers and trying to figure out the whole picture and whole me, so I didn’t want to cause any more contradiction than I clearly caused just sitting there and being polite, so I did not ask about the incident the chief neurologist had mentioned about, these two having an argument about my psychiatric diagnosis. This appointment repeated itself the next year, too, but luckily for both of us, I was admitted a permanent disability pension and I don’t know who were more relieved, me or the whole clinic that I was kicked out immediately of any care relationship with them.
About the unclear log markings and changes in the digital medical files, I contacted the patient ombudsman but it’s a project never getting anywhere, I still wait for explanations to most of it. It is interesting that when a half year later, a close relation of mine needed care in the same neurological intensive care I was held in, and we decided to ask the log markings and other documents to be seen so we could compare them with mine and see if there were similar exuberance in the visits and reading of files or if the oddities existed only in my files, they never sent the documents for my relative to see. The reaction of the medical personnel was equally interesting, when I visited my relative in the neurological intensive care. First, I could see in their faces there was this nagging feeling they had seen me before but couldn’t quite put their finger on where. There was speculation who I was, but when the realisation finally dawn, I saw some interesting things. I saw actual, pure fear in the face of a couple of the nurses who had treated me the worst. I also saw incredulity that I actually walked and functioned, I saw flashes of relief, too. They tiptoed around me so effusively that I’d have found it hilarious if I weren’t trying so hard not to show how little I thought of them after all that had happened. The incidents I witnessed there proved me that indeed, there had been something not quite right, and that I was not the only one knowing it.
Authority Stories.
I know every story has two sides, that nothing is black and white. I have tried to tell my story accurately and in detail, explaining the contexts and circumstances, my experiences and my thoughts, so as to get as whole a picture as I could and leaving nothing out, but what I cannot tell is the story from the point of view of the other part. Well, I have left a lot out, actually, as I could have named every single nurse and doctor, and other personnel, but I chose not to. It gives me no pleasure to point who were the nurses hurting me so badly I can’t still pee without pain, or the one who left me lying unconscious on a table, or who told me I was a mental case, or… But what’s most, I have had to leave out some details as throughout those, some kind persons would be easily identified, and I most certainly want to protect the few kind individuals I have met along the way. What I can tell, is that this happened in the central hospital of Satakunta district.
There might be some kind of another explanation for many of their decisions or acts. What I do not accept is any of the authorities, including the public health care district and their personnel, to hide behind any jargon. I know very well that authorities have no say when doctors decide about health care issues, treatments, or diagnoses. I know no official complaints would change those. I understand that sometimes it is hard to make the decisions that might feel right ethically and logically, but regulations make it impossible to do that, although I doubt there was not too much ethical questions circling in minds when decisions were made on this authority issue called me. I can think of lots of reasoning and explaining to a lot of things, but what I also know is that most of them are pure excuses. “We operate like this because this is such an authority issue” tells more than enough about it.
What I also know because so many other medical professionals, including doctors have told me and explained me in detail why is that what happened in the hospital, what happened with my medical files, what happened in general, and yes, what happened to my myasthenia diagnosis, could not only have been dealt in a completely different and professional way, but also why so much of it was either against any oaths, behaviour, customs, and ethics of medical personnel or, well, illegal.
It still bothers me that I had measurable test results showing my medical treatment actually worked, and they never wanted to see them nor the scientifical justification for my treatment either but said they didn’t have to. The had decided without seeing me or reading my medical files, that I was a mental case.
As a researcher myself, I do highly object this reasoning. How is it possible that facts are ignored and instead, things are arranged or reinterpreted to look the way they wanted them to look? In science, that would be called forgery. I doubt it’s any different in medical care either. Or, as in this case, there is not even any kind of reasoning, just a shrugging all reasoning off and saying they don’t need to listen to anyone. How very convincing and impressive behaviour and reasoning from professionals.
After all that happened, I strongly think that the switch of diagnosis from a neurological to psychiatric one has no medical justification whatsoever. For all the years anyone who had even tried to solve the mystery of my several rare illnesses and their combination affect to each other and how to help me, not once, not one single time they hinted that this all might be down to psychiatric problems.
One doctor laughed good-naturedly after hearing that apparently all I had was functional, psychiatric problems, that hey, you are a theologian, just get a grip and start believing your (extremely) low ferritin levels a bit higher, and what about the alfa1-antitrypsine deficiency, stop imagining your genotype.
“Patient has no psychiatric problems nor need for psychiatric care” reads in my papers, written by the chief psychiatric of the same hospital, only approx. 9 months previous to my hospital stay. So, why is it, that for a neurological diagnosis, you need concrete evidence and a lot of testing, but to dismantle it, you can just reinterpret it all or simply ignore the evidence? Or why, for a psychiatric diagnosis, it’s completely enough to say that the diagnosis is certain because I say so, even if other professionals disagree? Or, this might be the best part, why is it, that for a psychiatric diagnosis, it’s enough to make the decision without so much as seeing the patient and reading her medical files?
I am, once again, stressing that I do not have any doubt that any complaints or official reclamations would ever change my diagnosis (which, in all fairness, should be done as there’s quite a hollow reasoning behind the switch), nor have I high hopes for official apologies I know I’d be more than entitled to receive from quite a few instances. That is why I finally decided to write it all down. No. I, once again, stress that I write this because I do think that so much would have been done differently if I weren’t an authority issue.
During my stay at the hospital, I managed to write a couple of short SMSs to my husband at one night from the intensive care when I couldn’t sleep. There was complete silence for a while, and I could actually command my brain and muscles to work together for a moment. My husband wrote the SMSs down in his memo from my stay. I had written in short words or parts of sentences, in gibberish, I had got most letters wrong, but with a bit of translating, it’s still readable. I wrote that I was afraid. That I had heard nurses talking in the corridor while shift was changing, and reports given. They were talking about revenge. How the chief neurologist was revenging me for something.
The word had got out that I was not in the best of conditions and somehow, I was revenged because of it. In my SMS I pleaded my husband not to say anything or not to tell anyone (my relatives, friends) anything happening in the hospital to me, that I was afraid they’d treat me even worse. I think these messages tell more about the whole episode than any official medical files ever, and tells a story entirely different from any normal patient. I was, after all, an authority issue.
To the Light.
I’d like to stress that I am not writing this because they denied me my medical treatment supporting my non-working body and thus, in short, denied me my functioning life. I already knew what it was to be without the support of my medical treatment and didn’t want to go back there, and now they had seen it and knew it too, and still they denied it. Instead, they chose quite an interesting way to make their point clear. However, it’s not why I write this story of mine.
I do understand that for some, unknown is something to be feared for, it is scary, it is frightening, it is uncontrollable. It’s much safer to stay at the known; it’s secure, it’s predictable, it’s controllable. It is a safe ground to stand on. What I don’t understand is that in a central hospital, also doubling as a teaching hospital in a country highly regarded for its science, there were doctors, professionals, who were completely happy to shrug off new knowledge on the basis of its being too new. How does medical science and research work if not gaining new knowledge and learning from it? I think they need to do just as much work as we rest of the researchers, gaining new information in order to understand new phenomena. Science changes. It changes every day. And professionals are required to change their views, practises, and even beliefs with the information, too.
I presented new information for them, staying that 8 days at their disposal. You’d think they’d have been interested in how my body reacted, take measurements and tests, make notes… I would have done so, anyway, if I were them. But they didn’t find it necessary. They didn’t find it necessary to read anything about my medical treatment, either. At least, that’s what they told me themselves. As a researcher, that makes me furious. Imperious behaviour of an almighty has never helped anyone, and it definitely won’t help patients at hospital. But I understand that not everyone is interested in new information, it’s safer to stay in the past. But this isn’t why I am writing this, either.
It is the simple fact that I have tried to get over the nightmares for three years and haven’t succeeded. (And because it still hurts when I pee, a physical reminder of things happened three years ago.)
I need to write it all down in order to get it out and to be free.
But I also need to write it to ask the question why. Well, lots of whys, actually, but they all sum up into one: Why all of it? Why I was treated like I was, why the oddities happened in and to my medical files, why they thought it necessary to handle me like an authority issue and not like a patient – a human being, why… everything?
It is absolutely clear that nobody in this whole case of mine can hide behind bureaucratic safe haven and say that everything happened was purely normal, acceptable, ordinary steps of authority dance, that I was treated like any other patient, that I only feel I was mistreated, and there’s nothing weird in the whole episode.
All that was left out of the medical documents, all the bended, twisted, even false documentation there, all the missing files, all the contradiction between what I was told in person and what was written down in the official papers of any kind, all the promises of help, even the promise of not changing diagnosis and then the actual reality, not to mention the “care” I had to go through… I was not only lied to and mistreated, my medical files fingered and illegally visited, but also my patient, privacy and human rights were violated. Oh, and I was an authority issue, not an actual patient, I keep forgetting that one.
I am expecting some very well-articulated answers and official apologies.
Of course, I would prefer them also to correct the mistakes and false claims in my medical files, and to clear off the purely fictional psychiatric diagnosis that was made in very compromising circumstances, along with explaining to me in detail why all happened in the way it happened was strictly necessary. But I know that this is not going to happen.
Every possible authority instance in Finland will once again, as they always do, crawl behind some magical bureaucratic jargon that protects and prevents them for actually doing something for their citizens. Each and every instance will say, like they have always done, always do, and always will, that this issue does not belong to their field of authority, try the other one, and the circle will be happily bouncing to eternity and beyond.
I’d be happily surprised, if some instance would catch this though, look into it and give me some answers I have been trying to get for the past three years, not only the obvious “we can’t have an opinion on this issue” or “your papers are received, thank you very much, case closed”. It might restore my faith in Finnish society as a constitutional state taking care of its citizens, if someone would actually say that hey, let’s look into this and get the answers. I asked advice once from Valvira, the National Supervisory Authority for Welfare and Health, and got an answer from a lawyer giving links to make official complaints and a report of an offence to police. That was it.
After everything, that is the least they could do, giving me some well-articulated answers and official apologies. I also write it all, to point out how it is, indeed possible, that all this can happen in Finland. I am sure I am not the only patient having oddities in official medical documents and log files and been through different kinds of maltreatment in public health care system. This is a subject that needs a louder voice to be heard. This is a subject needing attention. I am only one tiny disabled person, but there are authorities who have the voice and the power to do something about the state of Finnish public health care system, and this story of mine goes to all of them. Maybe someone will do something about it and help a lot of patients on suffering from inexcusable behaviour by public health care personnel.
Meanwhile, waiting that to happen (and probably waiting and then waiting some more), I will continue as I have done these past three years and more. I am grateful that I can still think that life is a precious gift to be treasured and lived fully, with all the highs and lows, the good and the bad, the ugly and the truth.
Even though I still have nightmares, even though it took oh so incredibly long to recover from it all, even though I still need to feel safe when I think all of it and cuddle up with my husband’s protective and calming hug to wipe off my tears, even though I still cannot breathe properly if I need to go to hospital for one reason for another, even after all of it, I still enjoy every single day of my life.
Well, to be fair and honest, I do not enjoy every single moment of my every single day of my life, though. There are highs and lows in every life that we’d prefer not needing to live through but if something, I have learnt to grab them with both hands, too and accept them, deal with them and live them through, as someday even those worst, darkest moments will lead us into light.
I bought myself a ring I am going to wear after finishing this story of mine, to remind me how I conquered my fears and nightmares in order to be free. There’s an engraving in the ring.
It was her chaos that made her beautiful.
-Atticus
The End.
❤️
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