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.
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