This is Part 5 of a story I'd love you to read. But please, please darling, start from the Part 1., here.
Part 5.
A Case.
You can read what I wrote about the episode after I got home three years ago. I didn’t know most of the things I know now when I wrote it, but the more reason I have to stand behind every single word I wrote back then. There is no sense in anything that happened. I still haven’t got answers and I still want them. I still believe some kind of a revenge happened. Why, I have no idea. And it certainly destroyed all belief and respect I had ever had into a fair, equal, and rightful Finland.
I was told nothing about what would happen, when I got into the hospital that October morning, 2017. It seemed to me then and it seems to me now it was some kind of a game.
I want to point out that unlike everybody in the hospital I was entering into, I did not know that, according to my papers “the patient comes to hospital for the cancellation of the medication”. (Cancellation not as in paused, but as in cancelled, for good.) And that, my friends, would have been a nice piece of information to know, as the patient in question. I had no idea, and nobody told me. I was desperately asking for any information what they were planning and if I would get help, from the moment I entered the hospital, but I was given none.
You need to understand that a person whose body can’t handle exhaustion, who is easily fatigued from the tiniest of effort, the mere being in hospital is a nightmare of its own. There is no silence, no possibility to rest when one needs to. Movement everywhere, all the time, all day and all night long, when only thing you really need is to have quiet and silent and a still moment to be able to sleep. Imagine, on top of that, the most agonizing uncertainty of your whole future, your health, your life being in hands of complete strangers and not knowing how they’ll handle it. No wonder I was more tired than ever. I even cried. The only time I had ever cried at doctor’s reception was, when during an examination in the cardiology clinic where I was lying in examination bed naked from waist up, a male cardiologist shouted at me accusing me of being so rarely ill nobody knew how to help me. I’d say crying in both instances is quite a natural reaction, though; being a female their breasts naked, barely conscious after an examination in front of a male doctor shouting accusations at you, or this event that has bound to have momentous consequences on my whole life whichever decisions they’d make.
It is interesting, to afterwards read the case report the personnel kept during my stay at the hospital. Those papers called the case report are not something visible in the online medical database. Not even the patients themselves can see these papers without specifically asking for them, naturally after first knowing such papers exist in the first place, how you apply for seeing them, how to find the required forms, after filling the forms – and after granted a permission to see them. To these case reports personnel should report every single thing, from how much patient had eaten or drink, what medicine they had had and when, how they feel, everything. And there is, of course, the preliminary form of basic information about the patient, filled prior to their arrival, in these case report files.
I had, naïvely, no idea what an advantage they had, being able to write this preliminary information about me. They were able to set a certain preconception about me with just a few little words – and with some conveniently omitted ones. Anyone being in contact with me, would have read these preliminary notes beforehand and I can tell you, they acted accordingly. I was certainly, a case. I was a case the whole personnel of the neurological clinic knew about and came poking their nose into see me like a circus animal in a cage. A case everyone felt entitled and obliged to be part of. There are those 200 unexplained log markings in my files and I can tell you, not a few of them were from during my stay at the hospital.
At the time, I was absolutely dumbfounded how some of the personnel, without having ever laid their eyes on me before, approached me with such unveiled and pure hatred and despise in their eyes. It hurts me, still. That they judged me even before I had a change to say hello to them.
You see, in the case report I have been made a mental wreck, having only psychic problems. On the other hand, interestingly enough, there is not a single word, not a mention of any kind in the whole case report, of my myasthenia gravis diagnosed two years previously and continuously monitored thereafter, the latest contact being only weeks before this episode, at the very clinic I was now being.
Someone had decided, without seeing me, that I was not to have anything but mental problems. What a nice attitude to have, for medical professionals, I’d say.
Waiting.
They kept me almost three days waiting, until anything actually happened. During that time, I asked and asked the personnel, nurses and doctors, what would happen, but I was told nothing. I was tired, I was worried, and I even wrote about it here.
They had scheduled “cancellation of the medication” but I wasn’t told about it. I was still kept in the false belief that they tried to find ways to help me. They never let me know they were never even intending to.
In the case report, along with all the other things, my feelings were monitored and reported during those days. I am a bit clueless if all neurological patients have such mental reports in their files. If there were two sentences about me, at least another one was about my psyche. How I was anxious and tearful. Of course, I was, I was exhausted from the lack of sleep, from the effort and turmoil of past few weeks, desperate, unable to rest and sleep in the noisy ward, and absolutely clueless about my whole future. It’d be nice to know if anyone there actually understood that. That my whole future depended on their decisions. A bit of kindness would have not gone amiss.
During those first days, I was visited twice by a social worker of the hospital, which kind of came as a surprise to me. Still does, actually. What was the point or need or reason? She surveyed my possible needs for social support. It was a completely surprise to this social worker that actually, I had all covered. That the rehab advisor of the very same clinic we were being at, and whose job it would have been, actually, to make those questions this new person asked, had had taken very good care of me and all my social needs were covered thanks to her, from social benefits to rehab to medical help to personal assistance. Who, may I add, when visiting me in the ward later, was quite confused why the chief neurologist had asked another person outside the clinic to make these visits and questions as it could be easily seen in my medical files I had it all taken care of already. I was questioned about my home conditions. It was a complete surprise to the social worker that I had a personal assistant. Or disability benefits. Or medical aid, like a wheelchair. Which is interesting enough, as all these things would have been visible in my online medical files, under the clear headline of rehab, if wanted or needed to see. These visits are not documented in my reports, not even in my case report, by the way. Which makes me want to know even more, what was the purpose of these visits.
I recorded the whole time in hospital with my phone. All of it. I can’t use it of course, for anything else but for my private notes; I can’t let anyone listen to it, it would be against the law in Finland, as I most certainly did not tell anyone I was recording everything, let alone ask for permission. (You start to get the hang of it, legal sides of things are meant to protect you, but in fact, well, they always don’t.) I never knew that it would end up like it ended and that I’d actually have needed to use those recordings to protect me. But I have them, which means even after all these years I can check facts if needed.
And the fact is that, in no uncertain terms the chief of the neurological clinic I was held in, told me he understands I need help, that he would like to but refuses to help because he is afraid he would lose his “comfortable retirement office” as he put it. But, also in no uncertain terms he let me understand that they would find a way to help me. ‘
Well.
Afterwards, when one can be always oh, so much wiser, one could come to realise that “helping” could not only mean writing the prescriptions I desperately needed to be able to continue my less restricted, disabled and more capable life, but also it could mean that they would simply took my medical treatment off, left me into it, and told me that now everything would be all right, that all the evil from my body would be cleansed and when my body would be clean, I would start slowly getting better and mend from all the witchcraft I was allowed myself into. Isn’t it great, such an openhearted willingness to help the vulnerable? How so very, Middle-Age.
Just to make it completely clear, my medical treatment ain’t no witchcraft. The medicine I use is universally approved and used, completely normal medication, used every single day, everywhere in the Planet Earth; only in my case, the form it is dosed is a bit different. So, the only difference between witchcraft and medical science seems to be here the way I get my pills. So, well. Couldn’t see that coming.
All Nerves.
At this point, we need to take a little detour and have a word about autonomic nervous system. Mine has been tested and monitored several times and ways, and the result has always been the same. It doesn’t work. The sympathetic part is overrun by the parasympathetic one, and there is no balance whatsoever. Hence, I’ve got my medical treatment, to make sure there is something the system can work with, in balance.
I try to explain this system we all have, and I lean on scientific publications by Mayo Clinic, NIH etc., just to make sure I got it right, trying to get it as short and simple and shortcut as possible. Please remember, my archaeological and theologian oriented English vocabulary and education does not include all the fine tone details of the functions of our nervous systems.
Autonomic nervous system is the one inside us controlling, mostly unconsciously, our bodily functions. It regulates how our body works, from heart rate, digestion, respiratory rate, pupillary response, to urination, from coughing, sneezing, swallowing to vomiting. It is also this system that controls our primary instincts, like the fight-or-flight response. The system is, as the systems goes, divided into different sub-systems. Sympathetic nervous system is seen as a quick response mobilizing system and the parasympathetic is a more slowly activated dampening system. They go hand in hand, making sure that if you stand up, your body kind of stands up with you and starts working differently than when you are, for example sleeping. There is this well-oiled collaboration between them and how they work, decreasing some functions, increasing them, in balance.
I haven’t got that well-oiled system, mine is broken. It’s like riding a bicycle with two wheels, another one completely broken, another one missing. How do you drive it?
As I said earlier, my sympathetic nervous system is a wreck. It has barely a word to say in my body. Lets’ summarize what it should do. What yours is doing, probably at the very moment. It should work in away, that it makes sure your energy motor gets started when you are, without literally so much as a thought taking care of your blood circulation working properly in right places and your heart beating fast when needed, making your lungs to widen when your body needs to get more oxygen, and so on. There are also these words ephedrine/adrenaline and noradrenaline connected to sympathetic nervous system. They are kind of thingies we need. Well, I don’t have them.
To sum up sympathetic part: my blood circulation doesn’t know what to do, nor my heart, my motor doesn’t get started, my lungs are resting, I’m in kind of a please-hold mode all the time. So, what this parasympathetic nervous system does, then?
It calms you.
It makes your lungs, heart, blood vessels, all of your body to think they can relax, too. So, I’m in please hold mode, and my body makes sure I keep being that way. But hey, this parasympathetic side makes sure your saliva production increases and you don’t run out of tears to shed.
One more thing. The receptors of the parasympathetic system (that is working devotedly overtime in me) are either muscarinic and nicotinic, and these receptors function differently, side by side. These receptors are, as luck would have it, the ones transmitting the acetylcholine signal in our body. And it is this acetylcholine receptor system, in turn, what is broken in myasthenia gravis. So, in short, when your autonomic nervous system is broken, and you also happen to have myasthenia gravis, you are so in trouble.
I cut some corners and explain the above to you, as this is something you need to understand. Because my parasympathetic system is working overtime and my acetylcholine receptor system not so, all the side effects of these two receptors can get through. It’s ok for the nicotine one, I need all the extra dopamine it can give me as I don’t have any, but as for the muscarine… When I take my myasthenia medication, it will, because of the broken nervous system, boost wrong kinds of things via muscarine receptors in me, and I get cholinergic crisis. But, when I have my special medical treatment making sure my autonomic nervous system knows what to do, when to do, how to do, and does it in full collaboration with all sides, there are no side effects of any kind, except this one good one: I can function properly.
It isn’t that hard to understand when you put it like that, to understand why I needed my medication, is it? Or so you’d think. If a theologian can understand, why in the name of everything Holy, it has no possibility whatsoever fit into the head of medical professionals?
Switched Off.
They wanted to see what happens when my medication was turned off and I was moved from the basic neurological ward to neurological intense care, so they could monitor me all the time.
That way, they made sure nobody could accuse them that patient safety was neglected. (Needless to say, that patient safety is a sacred, highly monitored and highly regulated issue here in Finland.) They had it all thought through. You see, when my medical treatment was on hold for reason or another for 15 minutes (and let me tell you, it was tested in endless ways that that could possibly have had nothing to do with my mind, but all to do with my body), my functioning started to collapse; my entire autonomic nervous system started to collapse. My breathing got heavy and difficult as my myasthenia gravis medication’s side effects had no border guards but were able to enter. I couldn’t move my legs or arms. I couldn’t speak. So, they put me into intensive care so they could monitor me all the time and say they was taking my patient safety seriously. They didn’t take me or my symptoms seriously, but they took my patient safety seriously in order to protect themselves.
On day three, my medication was turned off and I was on my own.
Literally.
It took about 20 minutes. There was a clock on the wall opposite to my bed, so I really am able to tell that. Twenty minutes and I couldn’t move, I couldn’t speak. There were monitors peeping above me – which one; heart, blood pressure or what, I have no idea – but nobody took notice. That soon took to be a rule. The monitors beeped the next couple of days quite devotedly. I started to lost consciousness, drifting in and out.
Nothing of what followed during the next few days is mentioned in my medical files. Only a tiny portion of what followed is written in the case report of personnel, where they are obliged to write down every single thing.
It took nearly an hour, as I had problems with swallowing my enthusiastically running saliva, nearly choking into it, until someone took notice.
There was a neurologist in the ward, and they examined me, my completely senseless limbs and all, and took notice of my extremely low blood pressure and heartbeat. No wonder, as the support of my whole damn autonomic nervous system had just been switched off. I thought that this is it, now they understand. No.
There were a couple of other patients there, who were evidently shocked. They had seen I had actually been walking into the bathroom and back, eating and talking, smiling (I cannot stop it even in hell, it seems) and being normal one hour ago, they had no idea what had happened and why, and clearly they were thinking why I was treated like that. The confusion in their face was huge. One of them came several times to check later, after they were moved to another room, how I was and they looked so utterly sad and frightened and confused.
Hours came and went, and I was laying there, in my bed, unable to move, swallow, speak, react. But my brain did function as well as my battered brain ever could. (And believe me, I have been tested by quite a few neuropsychologists along the way, who all say that when one has a researcher background like I had, there must have been quite some capacity there and still is, injured or not.) I can’t, for the life of me, tell the time when our children were born or most things from my own childhood, I can’t remember my own PhD, but I still remember every single thing happened in that hospital, in October 2017. The arrogant and despiteful smiles. The cold eyes. The laugh. The rudeness. The hurting. The pure hatred. I wish I could not. I wish it didn’t play on and on, crystal clear, on repeat, in my head.
I realised that for such terrifically well-educated neurological personnel, these people had no idea that if a patient could not move or speak, they could, nevertheless, actually understand, observe, listen, and took notice. Quite clearly and sharply.
I can’t help thinking how many other patients, helpless and defenceless, are treated like utter waste, and it makes me so, so, so angry. Angrier than I could ever be about how they treated me, as I knew then, laying there in bed, being treated like s*it that they will not, cannot, could not, or shall not ever, ever break me. But how many patients these people have succeed to break, with their behaviour, let alone deeds or lack of them? What happened to that young, lovely girl, who had absolutely horrific migraine attack that had paralysed her, after they sent her home with this clever advice to avoid eating tomatoes? (She hadn’t, in case you were wondering. She just had hemiplegic migraine.) How many patients actually start to believe they are waste, after they are treated like one?
I had nothing but time, so while I drifted between conscious and unconscious, I observed. And it made me scared. It still does. Scared and angry.
There were, as there always is, a couple of exceptions among the pathetic excuses of medical professionals. I remember to this day the feeling of a hand, of one exhausted nurse sadness and pain in her eyes that made me wonder what lied under that kind-hearted smile, gently moving my hair out of my eyes, chatting about her hopeless knitting skills while trying to get me to swallow some liquid. (You see, when your muscles don’t work, it also means that you can’t force yourself to swallow. Which, in turn, means, that you can’t eat nor drink. Which, in turn, means that after a day or so, there isn’t much anything left in your body to function with.) I remember another nurse, treating an old lady with dementia (causing quite astounding havoc in the middle of the nights for such a tiny lady) with such gentleness and patience it still makes me want to cry. How I hoped it would be these kind nurses entering the room, how I hated when it was someone of the rest of them, filling the room with a negative aura so thick it could choke you.
Of course, I saw how demanding work they did, but I thought then and I still think that there is no excuse whatsoever to treat other people without the merest hint of humanity and respect, however tired you are. You could do act with humanity, even kindness if you want, even at work, even when tired. I saw proof of that capability, too. They should teach that at their school.
To this day I cannot understand why they decided to treat me like disgusting waste? Why they went to such lengths to trying to prove me and maybe more importantly, to everyone else, I was mentally ill? Why they didn’t, without the exception of just a couple of nurses, even treat me like a human being? Would that had been so much to ask? And what’s more, who else have been treated like that?
End of Part Five of Ten.
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