My Story Part 6. Wings At Night.

 

This is Part 6 of a story I'd love you to read. But please, please darling, start from the Part 1., here.  

 

Part 6. 

 

 

Chaotic Moves.

 

The next couple of days I could move only occasionally, from one side to another or lift my hand, and after several hours of rest, to move a bit again. I was able to whisper at times, often I couldn’t do even that. Most of the time, I couldn’t speak, swallow, or move if I kept my eyes open at the same time, and vice versa. It was too much for my body, to do both.

 

This is also something they should teach to the medical personnel:

 

If a person with neurological problems is exhausted (as in subject to exhaustion caused to them) beyond anything, they need to collect their very existence for each single movement or deed. First, they need to get the message what they should do or what is wanted of them clear in their head, then get the message forwarded to their brain, and from there to their body. And. It. Takes. Time. They should teach, too that it also takes immensely time to recover from each of these efforts, larger than any mountains ever conquered. So, everything takes time, but it doesn’t, and I repeat, does not mean that the patient is a) lazy, b) uncollaborative, c) deranged, d) faking, e) stupid, f) all of them.

 

This seemed to be beyond understanding in neurological intensive care. It would be hilarious if it wouldn’t be so utterly sad. If there is to be one place in a hospital where personnel should understand neurological problems, you would think that that would be a neurological ward or clinic. Don’t. It isn’t.

 

Sometimes I could not swallow, open my eyes, lift my head, move my legs. My brain and body were exhausted and confused and running overloaded from everything happened and happening, and being in the intensive care where there were constant beeping and sounds of feet, rustling, speaking, with 3 televisions with different channels on in full blast, bright lights burning my eyes, definitely didn’t help. It was a cacophony to my brain. I felt completely lost in the chaos.

 

I remember one time, at a special neurological rehab centre, I was so tired of the day’s tests and exercises I could not remember how to spit toothpaste from my mouth. I sat there (in a shower stool), in the bathroom, in front of a sink, with a toothbrush on my hand, thinking I know I should do something now and I cannot possibly go to sleep with toothpaste in my mouth as I would choke on it and it burns in my mouth anyway and swallowing seems somehow not as a very good idea and I have to do something. It took me a minute or two, sitting there, staring at my reflection from the mirror, until it occurred to me that I need to get it out. Then it took another minute or two, when I worked on how. I couldn’t, for the life of me, spit. Not even when I finally realised that it was what I was supposed to do with toothpaste, after washing your teeth. To spit it out. I couldn’t get my muscles to spit. I had now idea how that happens. So, after a while or two thinking a strategy exit as the toothpaste really started to burn in my mouth, I simply bended my head as low as I could, opened my mouth and let the liquid drain to the sink. A neuropsychologist explained to me the next day when I told them about it that it was completely “normal” for a myasthenic, to kind of forget how muscles work, how to do simple, everyday tasks, when the messages can’t simply get through when you are tired.

 

So, imagine being in a hospital, your whole autonomic nervous system broken down, your myasthenia medication switched off too for good measure, with your extreme exhaustion and all the stimuli around, what it was to try to get the simplest of messages through the wreck of a body.

 

After silent moments of peace, I could, agonisingly slowly, taking support from the sides of the bed, turn from one side to another. I could, at times, keep my eyes open. I could, at times speak and swallow. I could even, in the middle of the night, if the Dementia Lady was quiet and I had had a moment’s chance of sleep, take my phone and send a gibberish text to my husband, with one hand only. I could do all these things, if there were no movement, no sound, no light, nothing to disturb my completely overloaded brain to get the message through to my body.

 

These moments were far and between, though. And for some reason, this was beyond understanding in there. Why was I being so difficult and not immediately obeying or reacting to the barks of nurses, to turn so they could change my sheets, keep my legs in place so they could catheterize, to open my eyes when they wanted, to eat, to swallow, to answer? Why I was being such a difficult patient, perfectly capable of doing these at one moment but not the next when asked to? Oh, how they made me feel like a total idiot. A lunatic. I most certainly did not voluntarily just lay there, in a bed in their ward, saliva dripping from my mouth because I could not swallow it, being catheterized because I was unable to pee. What actually hurts me is, that they must have known in a neurological clinic exactly how a nervous system of a human being works and if it doesn’t, what happens. They saw it all, they must have known and understood, made the connections, and still they acted like all I had was mental problems. It’s scary as hell, the other option, and I cannot believe in it; that they would not have known, in a neurological clinic, about how human being’s autonomic nervous system functions and what happens if it doesn’t.

 

And all the time I knew, they knew, that if my medication would have been turned on again, I could have been able to function again. But the game went on.

 

 

 

All Sugary.

 

My sugar and temperature levels varied a lot and my blood pressure dropped often and quite considerably, during the next days. My heart rate was low and at times, irregular. I drifted in and out of consciousness. I had terrible migraine. I felt nauseous, my muscles were weak and cramping, and I had pain. I needed to be fed. I needed to be turned in bed as I couldn’t move. I couldn’t even pee, and I was dehydrated. There is no mention about any of this in my official medical files.

 

Most of the time I wasn’t able to eat without help as my muscles just denied all collaboration. How I could have taken a spoon, hold it, move it, take food in it, move it into my mouth, open my mouth, put the spoon in my mouth and then out again, close my mouth, digest, and swallow, when even opening my eyes to see what I was doing, was too much of an effort?

 

Which means, I often needed to be fed. Swallowing was so hard work that I couldn’t drink enough, and I most certainly knew how extremely important drinking was and was trying my best as I had had problems with dehydration for years, as my kidney doesn’t do its work properly. Later, it turned out my dehydration lab test results taken just before going into the hospital were borderline catastrophic, but I did not know it then; I could not have possibly had the energy to check my online medical files for the results. On the other hand, the personnel were perfectly capable of seeing the lab results. Only, of course, if they did not read my papers, they might not have seen it, but there are those 200 extra log markings, so somebody was bound to have read my papers, and among them, my lab results.

 

A quick detour, again. Symptoms of too low natrium levels, just a few to be mentioned, are… Any guesses? Headache. Nausea. Loss of energy, drowsiness or fatigue. Muscle weakness, spasms or cramps. Unconsciousness. Sounds familiar? Well, yes, that’s how my body was reacting. But then, there is no mention of any of these symptoms nor of my low natrium levels in my medical files, so the problem didn’t exist.

 

I could not eat or drink properly, or at all, and my natrium levels were pathetic from a start. When you combine my extreme exhaustion and no possibility to recover from it without my medication, my autonomic nervous system having been shut down, and my low natrium levels, there is no way my body could have functioned properly. And believe me, I wanted it to. Faith can move mountains, they say. Well, as a theologian, I do know a thing or two about faith, but believe me, it cannot make you pee.

 

 

Mind the Gap.

 

Pain is something I am quite familiar with and used to and therefore, can handle it rather well. I have to. With all things weird inside me, there isn’t that much choice on painkiller side of things. So, I have learnt to think the pain away. Don’t go all mindfulness there, I hasten to say. Although most of it I can think away, not all pain is handleable. I can assure you, migraine or neuralgic pain is something you cannot make your mind to move inside a raisin to, as the very helpful advice goes, given to my friend in the very same hospital’s other clinic. (Although, he did not mention which raisin brand to do so with, so maybe we have tried the wrong ones?) We could raise the subject of faith and mountains here. We can also start wondering where these doctors come from in this particular hospital or is it a wider disease, as there seems to be a huge gap between illusion and reality. I might add it isn’t the patients with the illusions.

 

I’m so used to being in pain all the time I don’t usually even notice it. I know it’s weird, but it is just like glasses. They feel a bit strange first, but after you have been wearing them for a while, you stop noticing them. However, with the extreme noises in the stroke surveillance, resting was literally impossible, and without rest, pain steps in. I couldn’t think my migraine or neuralgic pain away - even if I tried my best. It turned out that as simple thing as painkillers was hard to get. But, on the other hand, medicine in general was a bit of an issue, as getting my myasthenia pills on time was not easy either. (A few days later I didn’t get them all, as they wanted to run some myasthenia tests, and the tired, confused wreck of me didn’t understand to say no, but accepted, as I could not think straight.) I heard one nurse talking to another about someone forbidding to give any painkillers to me, but as that is a subject definitely not mentioned in my medical files of any kind, it remains just one odd piece of a puzzle. They had even a bit of an argument and against the directions, the nurse gave me some painkillers. I think it kind of saved my sanity there. Without paralyzing (pun intended, I wasn’t an F1-machine with top gear on anyway) pain, it was much easier to think myself into my favourite place, to Beachy Head in Sussex, England, where wind blows your face so hard it catches your breath, where sun glistens in the mighty waves, and the chalk cliffs are so white, so dazzling white you think this must be what Heaven looks like. I’ll tell you a secret; I actually spent most of my hospital time there, remembering how our family had enjoyed collecting sea glass and how the salt had made our hair stick out in all directions. I had nothing better to do, so at least I could choose to think happy thoughts. Naturally, there is no mention of any of the pain or migraine I had, or the pain relief they gave me, in my papers.

 

Dazzled.

 

Well, in the end, they forgot to mention a lot of things in my papers. They forgot to mention, in my official medical files, that the chief neurologist had prepared the personnel well, prior to my move to the intensive care. A direct English translation from my case report the personnel kept, parenthesis mine:

“Cancellation of the medication and strict surveillance. If needed, Diapam 10mg x 1-4 p.o. (orally) or 5mg x 1-4 i.v. (infusion).”

You know diazepam? The medicine used for anxiety disorders or alcohol withdrawal problems? Yes, that one. In Finland, the pharmacy factory manufacturing Diapam, the most commonly used diazepam medicine, writes in their medical info: Not to be used if you have myasthenia gravis.

 

I was in Finland, in the main hospital of our health care district, in the very same neurological clinic/ward, with which I had had a care relationship for the past 2 years, because of my myasthenia gravis, and their chief neurologist had instructed the personnel as follows. If needed, Diapam 10mg x 1-4 p.o. or 5mg x 1-4 i.v. Either he was ignorant or plain stupid, or, more probably, he had decided without ever seeing me that I did not have myasthenia gravis. How come? Because I had this totally, annoyingly troublesome medication problem to handle with?

 

I might be naïve and optimistic and trusting too easily in all things good in this world, but any of these options to why I have this sentence in my papers, is a proof that Finnish health care system can be dangerous. If someone has so much power to behave so autocratic (or ignorantly or stupidly), it’s horrid to think what else they could do when they set their mind to something.

 

The dose the chief neurologist had ordered to be given to me, was the maximum dose allowed, according to Pharmaca Fennica, the Finnish pharmaceutical bible of medicines.

 

I am so indescribably grateful they never actually used diazepam on me. Or, I think they didn’t. At least, they did not, according to any of the written records. The maximum dose prescribed for me would have been lethal. It would have intervened my central nervous system and blocked my breathing. Medicines affecting to central nervous systems are lethal for a myasthenic, and therefore absolutely and inexplicitly forbidden. By any language, even in Finnish. You can google diazepam and myasthenia gravis, if you like, and then wonder what kind of a roulette the chief neurologist was playing on me. But I was nice, I was coherent, I was calm and quiet. (Hey, I couldn’t move or speak, for most of the time anyway.) So, they had no reason to bump that stuff into me.

 

I wonder, what kind of situation this use of diazepam was planned for? Did they really think I was some kind of an addict needing to be calmed down quickly? No wonder personnel behaved so hatefully towards me. I was made either an addict or a lunatic. Nice one, indeed. I’d love to have known and understood that at the time. I only saw hatred and despise; I couldn’t possibly have known the reason for it.

 

I try to see good in everything and everyone. I try to explain away why some people behave so badly at times, as we never know what happens behind the façade of another human being. There might be so much pain, sorrow, and agony, or fear and anger there, explaining why they might choose negativity as their survival mood, especially if they don’t know any other way out. Handling pain or fear of any kind for any reason is a tricky thing, and it is better not to judge harshly without knowing what the other person is going through. However, I cannot explain away that whatever most of the personnel of the neurological ward were going through in their personal life, whichever reason, officially given them orally or in written form of my case report, how they behaved towards me was inexcusable.

 

It is not only the hatred that is bothering me; that I could explain away with fear. When you encounter something unknown to you, you might instinctively react negatively, especially if you are given example or even permission to do so. I could shrug away the despise, as I do not need their approval or permission of any kind to be who I am. I could, was I really to set my mind into doing so, see glimpses of the uncomfortable situation they encountered with me. A coherent, well-educated, well-articulated, well-behaved patient, with very strong authorities and reasoning standing behind her and supporting her, coming at their nuisance, and them forced to make decisions about a subject entirely unknown to them. But I will not go there, to make myself to understand them: you need to remember, I was a researcher once, too, a professional who knew that if you do not know something, there is two things you can always do if you are a professional and acting like one: first, admit you don’t know, and second, gain the knowledge. You could always refuse to admit your ignorance, though, but it never gains anything good, and to refuse to find out about the subject you don’t know about, that is not only stupidity, it’s unprofessionalism.  So, I kind of understand something about the context I was thrown into, and the reactions reflected to their attitude towards me. But. That will not and cannot ever explain their behaviour. Not only the neglect – they could argue they had monitors on the whole time (but didn’t bother to watch them), the words and the ones left unsaid, but also the things done and undone. Not only in the hospital, but also afterwards. You see, three years later, I am still living the consequences.

 

But what happened next, that cannot be explained away. Ever.

 

 

 

About Trust.

 

First two days in hospital I spent in the neurological ward, waiting for something to happen. No, I need to confess, even if it is embarrassing, that I was so childish and naïve and believing in an honest society that I hoped, I believed a miracle would happen. Or, at that point I didn’t even think it would be a miracle, it would be simply the right thing to do, to help. It wasn’t as if I was asking for impossible. I was just asking a simple task doctors are very capable of doing every day of their career, to write a prescription. And not any prescription but one I really needed to be able to function and I had all kinds of proof, test results and so on to back me up. How immensely naïve I was, entering the hell thinking there would be angels, there. How naïve and overly optimistic I was, considering I had not been receiving much help from the public health care at any point. Why I thought I would get it now, is really beyond my own understanding, when I think about all that happened.

 

First two days I remained optimistic. I was desperate and exhausted, but I was optimistic. On the third day, when my medication was turned off, I still remained optimistic. (A reminder here: I did not know at any point of the 8 days I spent in hospital that the plan had been, from the start, not to help me.) I fell for my usual vice of being too trusting, too naively believing everyone acts according to the Golden Rule and thought that when they see what happens to me without my medication, they would see the proof and I’d get help.

 

At some point during the next four days spent in the intensive care, I started to realise this is not going to end well. It was all the little things. Believe me, I am good at noticing little things. When you have spent hours, days, weeks, months, even years after another unable to do much more than noticing things, you are kind of good at it. I can see the delight in opening a new package of coffee, the fresh aroma filling the air is just so wonderful. I love when the sun has one of her playful moods on and makes her reflection on the crystals dance around in all colours nature can think of. The endless beauty in everything. But also, it had toned my senses to catch the undercurrents, the unspoken. I rarely am wrong, interpreting another human being, their attitude, their personality, their behaviour, their whole essence. It is usually all there, visible for all to see, the soul of a person, if we just stop to look. What’s more, you can see the way they see the world, how they react to different kind of situations and things, what they think but don’t say, how they feel. The pain in eyes of a human person can be almost palpable. But then, I am a theologian, maybe that’s why it’s so easy for me, to see to the soul. So, of course at the hospital I watched the eyes of everyone approaching me, considering I was conscious and could open my eyes, of course. And I could see it in their eyes. Behind the sometimes tired eyes, there were mix of feelings. The fear. The confusion. The cautiousness. These were the feelings I sensed most often during the first days. After I was moved to the intensive care, the eyes changed. (In two ways, different persons, different feelings.) There were, besides fear, also hatred, contempt, arrogance, and malicious spitefulness. Which, to this day I cannot comprehend. But also, I detected surrender and submission. (Also, let’s not forget the compassion in one or two pairs of eyes, those eyes I think I can see in my mind’s eye the rest of my life.) And it was because of this surrender and submission, combined with the negative feelings that I realised I would not get help. What I didn’t realise was, how far they wanted to go to make the point clear.

 

After realising I would not get help, I still kind of hoped for miracles. For humanity, reasoning to save me. And, after I realised there weren’t either hanging around, the only thing I was waiting for was to get out but oddly enough, already back then I realised I needed to fight until the end, I could not break down until back in safety, at home.

 

About Pee.

 

It was a paradox that on the one hand my back and hip ached so much I thought I’d go mad and I got the worst migraine I had had in decades, but on the other hand I didn’t feel the need to pee, because I couldn’t feel my muscles. I didn’t do it on purpose. But at some point, it comes a problem, when a person doesn’t or can’t pee.

 

I was asked if I needed to go to bathroom, on that first day my medication was turned off. Well, giving the fact that at the time I wasn’t able to speak, let alone walk, I’d say it was quite a funny thing to ask. It took approx. 9 hours until a kind nurse realized I hadn’t peed the whole day, and ultra-scanned my bladder. There was ca. 800ml urine in there. (In case you didn’t know, that is a lot.) I wonder, how many other patients are and/or kept in a condition like that in hospital, dependable on the good-will of a nurse? Do they say to a paralysed patient or someone unable to keep their consciousness, that up you go to the bathroom, where there is will and all that.

 

They didn’t write it down to my medical files of the time I spent in hospital, that I needed catheterization. There is no mention about any of it. Not about the couple of days I had indwelling catheter, when it came obvious I could absolutely in no circumstances pee, because I could not feel pretty much anything below my belly.

 

The chief neurologist, hearing about this nonsense, that I needed catheterization, let alone indwelling one, angrily ordered the nurses against their objection to take it away because “she will find her legs, when she has to go to the bathroom”. I didn’t. So, of course I needed catheterization several times during the next days after taking the indwelling one away, but there’s no mention of it in my medical files.

 

They never mentioned in my medical files either that I had a massive UTI (urinary tract infection) while in hospital. I had had one, the first in my life, right before going into the hospital and the antibiotics weren’t working properly and I was certain it hadn’t cured. I mentioned about it when I arrived at hospital. I mentioned it again, and then again, and then someone took tests, and then I had to about the results again and again – until my husband checked the results for me from my online medical files. That’s how I was able to tell the personnel of the hospital I was being cared that I needed more antibiotics, that my UTI had gone out of hand. I did get the antibiotics, after some more asking and reminding, after three days. Which makes me think, how is it, that a patient is required to be more aware of their issues than personnel and to be responsible for making sure the personnel is doing what is needed? What if you cannot do that? What if you are unable to take care of, defend yourself?

 

But then, any of this didn’t matter, as someone had decided all I had was mental problems and if I just had get a grip, I’d be able to do a lot of things, like eat, swallow, move, turn over, open my eyes, pee. So why to mention these details in my medical files, along with low blood pressure, fever, high sugar levels, and irregular heartbeat, to mention a few. I can tell you, I tried to will myself into many things during those 8 days I spent in hospital. (Remember faith and mountains?) Being able to pee would have been in top of the list.

 

Right to Be Human.

 

Is it strange, what power does to people, isn’t it? You can do a lot of things, if you are powerful, and it is, in the end, in your own hands, to choose if it is good or bad what you do. In a hospital, where patients usually are not at their best and strongest, it is the personnel who has the power. Power to decide a lot of things. What to do. When. And how. They can also decide, how to behave. They have the power to act with kindness or then not. I’d love to ask some of the personnel, why they felt they were entitled to be… evil?

 

Was it strictly necessary to left me, a couple of days later, after moving me from the intensive care back to the neurological ward, sitting in a chair with a plate and spoon on the table in front of me, and let me faint there, and after other patients in the room alerting help in panic, laugh and shrug and say, she’ll get up if she wants. (Well, I didn’t. I couldn’t.)

 

Or, was it entirely necessary, from one nurse, when a couple of days later, back in the ward to comment that she thought I was a mental case and needed to just, you know, get a life.

 

Was it strictly necessary for them to make me walk, when I didn’t feel my legs? (I fainted. It was my husband did catch me, he knew what would happen and was alert.)

 

There were a lot of tiny little deeds and words and things not strictly necessary. But they decided to do those, nevertheless.

 

It is strange indeed, how people react when facing something they are not used to handle or not capable of handling. And as I have said earlier, I do understand, if not accept, some of that behaviour. I did not fit into any of the boxes they knew existing and tried to squeeze me into, so they must have been frustrated, confused, afraid maybe.

 

However, there is one incident I am not going to, ever in my life, let anyone explain or shrug away. Among the many, many questions playing inside me, on repeat, is this.

 

Was it entirely necessary for a couple of nurses in the intensive care to be so extremely rough-handed, while catheterizing, and during it making me feel so completely humiliated, so humiliated I still feel, after all these years, like my inner privacy, my human dignity, my absolute being had been abused? Raped. I cannot explain it in any other, any less strong words.

 

I feel I have been psychically raped.

 

Although the individuals I dealt with in my own line of work weren’t ever in any urgent need of catherization, having been dead for over three thousand years and all that, but I can’t help wondering if there might exist some kind of a mutual agreement, based on common sense maybe, that being in a medical profession does not necessarily mean you are supposed to or entitled to hurt on purpose. There is a mutual agreement, in the field of archaeology that human remains are always, without exception, to be treated with respect and dignity. You’d think there’d be such an agreement and understanding among medical field, but maybe I am being naïve again.

 

So, when a woman nurse (or two) catheterizes another woman, you’d think they would be gentle and matter of fact and act like professionals maybe, like most did? Not using any more force than strictly necessary, not laughing nastily to each other, joking about it the same time and laughing that how can I say it hurts when you can’t control your legs? To physically hurt a patient who cannot move and defend herself? Would it be possible to, maybe, take make sure that a patient would be left with her dignity, if nothing else? Why to steal that from her, too?

 

And was it really so too much from me to ask to have the curtains closed during the catheterization when there were male patients all around me? It was. The nurses just laughed and accused me of being too churlish and picky and demanding, and the curtains remained open. Repeatedly. Not with every nurse, no. But with these two, who thought it in their power to hurt me in any way they possibly could find. I wonder, do they do that every day, all day, and does it make them feel good? Powerful, maybe?

 

United Nations defines Human Rights Principle as follows:

” Human rights are universal and inalienable; indivisible; interdependent and interrelated. They are universal because everyone is born with and possesses the same rights, regardless of where they live, their gender or race, or their religious, cultural or ethnic background. Inalienable because people’s rights can never be taken away. Indivisible and interdependent because all rights – political, civil, social, cultural and economic – are equal in importance and none can be fully enjoyed without the others. They apply to all equally, and all have the right to participate in decisions that affect their lives. They are upheld by the rule of law and strengthened through legitimate claims for duty-bearers to be accountable to international standards.”

And EU Charter of Fundamental Rights begins with Articla 1 – Human Rights, as follows:

” The dignity of the human person is not only a fundamental right in itself but constitutes the real basis of fundamental rights.”

What to some might be everyday behaviour, might be a violation to their human rights to others. I have nothing more to add.

 

I feel, and nobody can unjustify, diminish, or wipe off my feeling, I was psychically raped that October 2017. I still cannot pee without pain, both physical and psychical and I cannot sleep without waking up in the middle of the night, covered in sweat, paralysed in fear, crying, horrified, humiliated, and, as it is, shamed.

 

Add to that all the other behaviour and deeds and happenings and you might start to get the idea why I have nightmares.

 

And they gave me reasons for more.

 

End of Part Six of Ten.

 

My Story Part 5. Overflowing Gently.

  

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.

 

My Story Part 4. Use the Night.

 

This is Part 4 of a story I'd love you to read. But please, please darling, start from the Part 1., here.  

 

Part 4.

Thorough Paperwork.

 

As luck would have it, I had a myasthenia related phone appointment to the neurological clinic and asked from the neurologist appointed to me if they could continue the prescription as I was about to run out of my medicine and couldn’t be without. (The medication they knew about and had said, aloud, that was also supporting my myasthenia medication.)

 

You would think that was the sensible thing to do, wouldn’t you?

 

Only, it wasn’t. For such an intelligent person, it was such a silly and thoughtless and idiotic and naïve thing to do from me, but how I was to know?

 

How I was to know that the moment I ended the call, the machinery started its slow, inevitable, and poisonous rotation. I hate those, in principle gorgeous mixed media gear pieces my mixed media friends are often embellishing their artwork with. They remind me of being crushed between the wheels of bureaucratic hell.

 

Later, much later, when I was able to get to see all the papers related to the events (the papers officially existing), I could see that the phones must have started ringing the instant I finished the call.

 

In Finland we have this very highly and strictly regulated system to protect individuals and their rights, and privacy protection is the culmination point. It is regulated by Finnish and EU laws. Especially our personal health papers are almost sacred. Everything is virtually documented in online files these days, and you and medical personnel can read your medical papers in this online health care database called Kanta. But it is very, very regulated who have the rights to see and what. Medical personnel always need a good reason to visit their patient’s database and it is illegal to open files of someone you have no care relationship, unless you have a very good, explicitly given reason. What’s more, even if you have a care relationship, you are not entitled automatically to go through all the files of the patient, you need a proper reason for that, too, as you are entitled to open only files related to your field. And so on. There is always an imprint left from a visit in the online database; who has opened or read your files, which files, when. These regulations can be monitored and traced with the help of these imprints, visible in the logbook register. If needed, patient has the right to ask to see these logbooks and all the imprints recorder there. It is a crime, to violate these regulations. And not an insignificant crime, but one you can lose your medical practitioners license on or get a sentence.

 

Afterwards, I asked for all the log documents. My medical papers had been, for once, let’s say, thoroughly read. Widely and thoroughly.

 

My papers were so interesting, that probably the first time ever, they were read, by several public health care personnel, from the beginning to the end. Personnel who I had never had anything to do with, personnel who had never had anything to do with me. I did not even know who these people reading all my medical records were. Interesting, isn’t it? What’s more, illegal.

 

There were over 60 (sixty) pages and 200 (two hundred) unclear log markings, which means my medical papers were visited illegally 200 times.

 

In three weeks.

 

All because I had asked, if someone could write a re-prescription of medicine, I had used for 2 years with excellent, measurable, verifiable results. (Needless to say, without a single negative side effect.) Medicine used all around the world, every day. Just in a bit different way or form.

 

Oh boy, I wish such efficiency would have taken place when I asked for and needed help, during all those years. That someone would have actually taken time and read my papers then. But no. The only time I can see my papers have ever been thoroughly read is this period of 3 weeks, after I asked that my medicine prescription would be rewritten. When I actually did not visit any of the places my papers were read in. When, literally, I had never had any contact with any of those people or clinics or places my papers had been read in. This is illegal in Finland. Completely, comprehensively, fundamentally illegal. Everything should function here in complete see-through-honest-legal way. Apparently, it isn’t always just so.

 

Had I known that my papers were read so thoroughly, I would have thought twice about stepping voluntarily into the hospital a couple of weeks later. Had I known that for example, all my files were opened by the head of the health care district’s mental hospital, or by the substance abuse treatment unit, or by random health care clinic practitioners all around the health care district – needless to say, which none of those I had ever had any kind of contact with – I’d have said thank you and goodbye.

 

And… substance abuse treatment? Mental hospital? Well, I never. Until three weeks previously, nobody had during the over 2 years of treatment I had had, ever indicated even remotely negative allegations connected with it. It had, thus far, been seen as a good thing. And now, my papers were circling in mental hospital – and in a substance abuse treatment unit (selviämishoitoyksikkö in Finnish) which is defined as follows: the aim is to handle inebriated who come to emergency unit because of a somatic and/or psychic problem and need hospital surveillance. Its main mission is to handle patient’s use of substances, motivate them for further care, and to arrange appropriate follow-up care. Unit enables a safe place to get clear of the influence of alcohol, drugs, medicines, or other substances.

 

A I said, also the head of the health care district’s psychiatric hospital, among others, read all my papers. And I mean all. Every medical sheet, from the state of my lungs to my gynaecologist appointments, every file was opened. But I didn’t know it then. I had – and still haven’t – seen this person ever in my life, never had and never have been in that hospital. There is no reason whatsoever that these log imprints are in my documents. The only time I had been in a psychiatrics’ reception was, when the excellent neurologist I was finally admitted to two years previously, having diagnosed my myasthenia gravis, had asked me just before her retirement, if I would, for my own sake go to the general psychiatric clinic (that is definitely not the same thing as the mental hospital, these two completely different organisations here) so they could state the obvious in my papers as she said it, and confirm my myasthenia gravis was indeed myasthenia gravis and not mental problems. She told me this would be to protect me.

 

Of course, I went, and the result didn’t surprise anyone. Nothing psychic or mental, just neurological problems. (Waste of everyone’s recourses, summarised the chief psychiatric.) I found it hilarious and interesting and only later on, after the incident in October 2017 I understood what she meant and why she wanted a mention in my papers of evidence of no psychiatric problems.

 

So, to this day it is very unclear to me, why on earth someone in the mental hospital, let alone its chief, or someone in substance abuse treatment unit, got it into their head that hey, let’s see Emilia’s papers. And how they did get my social security number to do so in the first place, is another story I’d gladly hear explained.

 

And the saddest part is, the devastating, ugly, raw, and mind-blowingly unfair truth is, I have no way of getting justice, even if I know the things I do know now. And that, in turn means, they get out of it, and can continue treating patients like animals.

 

I have tried, for the past 3 years, to find a way to set things right, but I am so tired. I am too tired, and too busy living my life to get stuck into the negativity.

 

It burns me, eats me alive, knowing the injustice is there but not knowing how to make it right. I am too tired to try. I have been told to report this to the police and to the other authorities. I haven’t. It was so cleverly set up I have nothing to hold onto. Except for those 60 pages and 200 pieces of ugliest truth of illegal actions. But I wake up at night and think what if there is someone out there, treated like I was, right now, who cannot handle it, cannot bear it. Who wasn’t prepared by the system itself so well beforehand. Why it is so hard to get justice? Why injustice has always so much louder voice, so much more power?

 

 

Set up.

 

 

So, you see, I didn’t know that the wheels were set in motion. I was later told by one of the personnel actually involved and witnessing the episode happening in the hospital, that I was being set up and staged as a mental patient, and everyone knew. And let me just say, oh my what a good, thorough work they, for once, did. But I didn’t know any of this set up at the time. Everyone knew. And they remained silent. They didn’t do anything to stop it. This is one of the whys I really need an answer to. How do you live with your conscience, when you see injustice played grandly before your very eyes, and you remain silent, and do nothing? What’s more, what kind of a place in such a civilized state as Finland, makes that possible to happen?

 

I asked for help during the phone appointment I had with my neurologist, (a new one, the previous one getting retired). The neurologist in the phone said they will need to discuss this with the boss of the clinic. (And that’s the point everything started.)

 

From the tone of their voice I knew already the answer. I was desperate. I did another massive mistake. I wrote a plea to the health-districts leaders, to the ministry of health care, to the supervisor authorities, to all the places I could think of, with detailed scientific explanation from the specialist how my medical treatment functions and helps me and I asked for advice and support. Needless to say, I did it kindly, politely and courteously. I don’t know any other way. I have been raised to be kind, to treat others as you would like to be treated, to be polite, considerate, to take one another into consideration – preferably prior to yourself. How annoying behaviour, to be well-mannered. These authorities all answered me – and I have all these emails saved and neatly filed, of course – that I clearly needed the medical treatment and advised that my own public health care clinic should take care of it. So, I sent an email to the neurological clinic, forwarding the messages I had had.

 

It is so easy to see now how this was the last straw for some, high enough to decide about the destiny of my case, high enough to hurt me, high enough maybe, to feel their ego has been stamped on. High enough to feel so arrogant they never needed to see me, read my medical papers (not officially anyway, i.e. no visible log records left), nor read the scientific explanations about the medicines I was asking them to continue the prescription, before they decided I don’t need it. High enough to declare – without ever seeing me, that the only problem I had, was a mental one. I can almost hear it. Let’s forget that she had officially been examined and declared as-mental-illness-free-as-a-bird and having only neurological problems, and let’s make her be totally nuts. Let’s forget she has myasthenia gravis. (Which they soon did, literally, as all the evidence of my ENMG finds were conveniently wiped off from my medical records. Lucky me and my injured brain, I keep everything neatly organised and filed, so I have this document that cannot be found anywhere, anymore.)

 

My phone rang after a few long days after the first, initial phone call during which I had asked for the neurological clinic’s help, after I had sent the email. I was called to stay, for a couple of days, in hospital, in the neurological clinic’s ward “to help you”, said the chief neurologist during the phone call. And I was naïve, I was childish, I was overly optimistic, and I wanted to believe they would try to actually help me. And I accepted the invitation.

 

Support.

 

I continued my email exchange with the authorities, while waiting for the set day when I’d go to the hospital, trying to collect all the reasoning backing my side I could possibly get, so that I’d really get help and the prescription I desperately needed. My main point was to get official statements that anyone re-prescribing my empty prescriptions would not get into trouble doing it, as the private specialist had, when Valvira, National Supervisory Authority for Welfare and Health had, as it later turned out, illegally, restricted his license.

 

I’d say I got very impressive reference letters, all answering that the health district is responsible for my care and treatment and should and would be obliged to help. Also, I got assured nobody would get into trouble helping me. These answers were from quite high-level authorities, like Minister of Social Affairs and Health (STM), chief regional doctor of Regional State Administrative Agency (AVI). The chief of the public health care district answered to me that he will forward my message to  the chief doctor of the district and to the chief doctor of the neurological clinic (lots of chiefs around, I’d say someone should really look into the bureaucracy structures), so I know that not only the state’s highest level authorities, but also the leadership of local health care district were all aware of my case.

 

I had also most fascinating exchange of emails with one of the lawyers of National Supervisory Authority for Welfare and Health, Valvira. I asked how they’d advise me to proceed and get help in a situation where my health and patient safety was in danger because of their action. Had I known I’d sent my plea for advice to a lawyer who actually later on turned out to be most devotedly against anything and everything, I’d have thought twice, of course. I learnt much later on that the lawyer got their fingers burned sort of, when they tried their best to get rid of one other annoyingly good specialist in a bit too shady way. When this came public, they had an early retirement.

 

There are also shady twists balancing on the thin line of legal and not-very-so that happened to the specialist who treated me well, and some of these include the very same Valvira authorities, but again, it is not my story to tell, that one. All I can say that authorities seem to have quite their own, neat, happy little circles they are manufacturing all kinds of new ideas and ways to make the thin line between legality and criminal disappear. This might be now news to you but I should underline the fact that in Finland, authorities do not, will not, and cannot do anything illegal or shady, ever. Such a concept does not exist. (Or, so they say. I don’t believe in fair Finland anymore. An early retirement, how convenient. These people and their neat little circles.)

 

There have been several attempts to find out why Finnish authorities have such a comprehensively hostile aim to get rid of all the doctors in Finland who are trying to actually help patients, gaining knowledge all over the world, using the latest methods. There is an impressive list of authorities and bureaucrats who intertwine and overlap in a way they should most certainly not according to law, but as they seem to be above the law, nobody is allowed to do anything about it. One MD once told me that they are either threatened or forced to be silent. How sophisticated. Press cannot publish anything about it, so let’s forget the highly respected freedom of speech, too.

 

I must have involuntarily and unknowingly stepped into some very delicate shoes there, in the little circles, or in some other way annoyed someone. I would like to know how high it goes, the reasons I was treated like utter waste in the sophisticated and highly respected society of Finland. There is so many shady and unclear and downright muddy turns and twists in my story, especially concerning who contacted who behind the scenes, what messages were flying around, and who ordered who to do what and why, that I have no idea what I accidentally and involuntarily stepped in. I know if I knew answers to these, I would understand the whats and the whys happened. 

 

 

On my Way.

 

So, I had printed every single email, scientific justification, publication, everything I could think of to support me, and thought I was well prepared, when I got to the hospital. I gave the documents and papers to personnel, the very same papers I had already sent to the chief neurologist beforehand. Later, it turned out, he never read those papers. He said so himself. He didn’t need to read the detailed facts and monitored proof about how I benefit from the medical treatment?

 

At this point I was worried sick, stressed wreck, and exhausted to the bones. Which wasn’t good at all, in retrospective, as I should have been my optimistic, happy, laughing, smiling self.

 

But life happens. Our children were shocked that I was going to be away from home and in hospital of all places. They had taken one word here, another there and had quite a coherent picture what was going on. They were asking, tears in their eyes, with wobbly faces, if I would come home afterwards or if I would die, if everything would be all right and if I would get my medical treatment and a more well-being mum, or would I start collapsing again. Which meant that of course I was double worried and tried to soothe them that nothing sinister would happen, don’t worry darlings. (It is a blessing I have the most wonderful husband in the world, a person who is there for me, always, my bedrock, my everything. If one thing, I knew he would take care of our children when I was away, and I knew he would also be there for me.)

 

Having not only one or two, but a whole truckful of diagnoses that make me not only tiring more easily than average person, but also not recovering from exhaustion as quickly as an average person means, that when just writing one email could take me some days to recover to, you can only start imagining what effect this hugely stressful situation had on my body.

 

So, into hospital I went, exhausted to the bones, in one clear, sunny, crisp October Wednesday, when the nature was at its brightest. October has always been my favourite month of the year, with all the allegory and symbolism happening all over us in the nature with the gentle and tired sunshine, the frostily kissed nature glistening on misty mornings, the starlit sky in the night… It is as nature has woken for a moment with a paint brush in its hand and got all poetic in October.

 

I hate the fact that this episode happened in October. My whole body seems to remember what happened, when the leaves start to turn bright, and the nightmares start getting out of control. I fear to close my eyes at night. I wake up in the middle of the night, covered in sweat and tears, and my body thinks I am still in hospital, all alert and in panic, even if I try to talk reason to it. So yes, they kind of did make it true. They said that only problem I had was with my mind, not with my body, that I had functional medical problems instead of neurological ones (neatly wiping off any traces of proof for neurological illnesses along the way). I know now perfectly well how it feels, when your mind makes your body function all weird, and when your body makes your mind anxious. I had never in my life had such problems before that October three years ago. Not when I had a brain injury. Not when I had a brain haemorrhage. Not when my aorta was supposedly ruptured or thought I had a pulmonary embolism. I could handle with those. But I could not handle with injustice. It still it only ever happens to me when something tricks my mind or body to remember this episode in hospital, in autumn 2017, that I feel like drowning. How ironic that the only thing, the only incident in my life causing anxiety problems is what happened inside the hospital, with public health care system, that October. Body indeed has a memory. And I am intending to let it all go, in order to be free. To be complete me again.

 

 

End of Part Four of Ten.