My Story Part 7. Reach for the Stars.

 

This is Part 7 of a story I'd love you to read. But please, please darling, start from the Part 1., here.  

 

Part 7. 

 

  

Eye Opener.

 

 

Words, my darling friends, are a strange thing. They can tell the truth, they can help, they can hurt, they can deceive. And what is not said, what is not put into words, what is left unsaid, can be as much a blessing or a curse, a good or a bad thing.

 

I don’t know why they left unwritten most of things in my medical papers. Is it thought, maybe, that if it is not written down, it didn’t happen? How deceitful can as simple a document as medical file be, when there is left out certain facts. If you leave out all the uncomfortable and inconvenient parts, the document will indeed look really nice and efficient, but it isn’t truthful. It isn’t worth anything. And you’d think there would be quite a lot of things written down, in my files, about how I was coping without my medication in the hospital. Well, you would, but there isn’t that much. It’s a wonder, really, how efficiently they have managed to squeeze my eight day stay in a couple of sentences.

 

It is officially written down in my medical files that “patient capable of shutting her eyes”. Well, yes, only, they forgot to mention I had difficulties to keep them open. My whole medication had turned off, including all myasthenia gravis medication, and from mere exhaustion could not move a muscle, to swallow, to lift a hand, to open my eyes, to speak, to pee, my heart rate did interesting dives, my blood pressure thought it’d be a good idea to just, you know, use the first gear. You’d think these would have been relevant details to write down, too? But then, I am no medical professional. I’d love to know, though, why this little detail of shutting eyes has been thought important enough to be included into my report, but so much more was decided to be left out? I know I always say I love the little details, and I do, they are most fascinating things, but you’d think there would be some more of those little details in my files, so that at least some coherent picture could have been drawn?

 

With leaving all unwanted unwritten, fact becomes fiction, but how to recognise them from each other? You can twist facts into something entirely different, we all know that. There are quite some impressive examples in history. That’s why it is so important to get it all absolutely right, in official papers of any kind, isn’t it? Believe me, I can tell. Words. Matter. There can be an endless debate going in the field of theology, about if there is a word or a comma missing from a script, whether it is a mistake, an accident, made on purpose, misspelling and how that will affect to the entire interpretation, first of a sentence, then a chapter, then the whole book, and in the end, the whole concept of our understanding history; because of a word or a comma missing.

 

I want to give another example to highlight the importance of little details documented. There is quite a difference if you leave out listing some findings from archaeological excavations, thinking this won’t matter or, this must be a mistake as it doesn’t fit in – or if you record every single piece without leaving anything out, even if they seem irrelevant at the time. Again, believe me. My whole PhD was based on two pottery shreds in wrong places; they should not have been where they were, it was a complete mystery, but because someone dutifully reported those two small shards of ancient clay, it was possible to start tracing more misplaced pieces from other excavations, which in turn, is changing the whole history writing as we speak. So, really, believe me, I know. Words. Matter. (And the little details, those matter to me in quite more ways than you would ever imagine.) So, what you choose to document and what you choose not to, matters. I’d go so far as to argue that if you are to make an official document, every single fact should be documented in case those tiny details would be needed somewhere in the future. But then, maybe in my case they did not think it worth reporting, what actually happened?

 

Besides words left unwritten and words left unsaid and words chosen to be written and said, there is the question of acts, about which I wrote earlier. How you choose to act towards others. Also, how you choose to use your power, how you choose to act and behave when you have it. And what you decide to leave undone.

 

I do find it rather aggravating that not one person of the neurological clinic had the courage to question the whole set up. It is not only one or two of the personnel working in the neurological clinic who told me later, how horrible and helpless they felt, seeing how I was being staged as a mental patient (their choice of words, not mine), how I was treated, and how the personnel could do nothing about it. I am immensely grateful for them, that they chose to tell me. You cannot believe how much it means to me, to hear that it was not only me and my husband who noticed it all, the strangeness with its all aspects. (So much so, that my husband asked me repeatedly if I was sure I did not want to stop the madness and go home. I was, but why, we’ll get back to that later.) That there were personnel working there, seeing it and finding it wrong and horrible, is a relief; the injustice, mistreatment, attitude, the whole lot wasn’t gone unnoticed. There were a couple of nurses actually being kind and gentle and trying their everything to ease my being, and I am grateful for them, they were like fragments of rays of light in the darkness. But. Nobody stand up for me there, while I was completely defenceless and treated as I was, even if they saw it. Nobody.

 

Silence, my friends, can be a dangerous thing. To quote Saint Edith Stein, a Catholic nun killed in Auschwitz: Those who remain silent are responsible. If we close our eyes and ignore the injustice, we see around us, how can we expect others to behave any better?

 

 

 

Encounters.

 

There is something strange about the whole episode, something that does not add up. While lying in my bed, I heard fragments of conversations and even quarrel about how I was treated. I heard not only once or twice the word “revenge” that has something to do with me, but I have no idea what they were talking about. Later I learnt that there were some official complaints made about my patient safety being in danger while I was in the hospital, and high-level authorities contacting, so I’m second-guessing they were talking about that? But what would it say about the standards, attitude, behaviour, and quality of the hospital, if complaining about patient safety makes medical personnel behave and act toward the patient in question, hostilely and without keeping in mind any kind of human rights?

 

There are certain things in life one needs to accept being beyond reasoning; this hospital episode might be one of those. Also, there are certain behaviour or encounters, words or deeds in life one does not need to accept – and this whole episode is one of those, too.

 

One of the things I have tried so hard to understand and accept, is not only the mixed messages, but also the behaviour of the chief neurologist. It has turned out I can’t. Understand nor accept. Not after three years, not ever, without getting some answers to my thousands of questions. I’d prefer an apology, too, but although I do have my rose tinted overly optimistic naïve glasses permanently on, I do realise that’s one of those things that should but is never going to happen.

 

The chief neurologist had taken my case in his own hands, despite the fact that I had an assigned neurologist (who had, unlike him, seen me earlier and read all my medical files). So, he would be the one making all the decisions, but I can tell you it was quite difficult to try to have a conversation with him on the subject or try to get him read my papers. There seemed to be all kinds of diversion tactics going on, including one incident, when having seen my husband in the corridor the chief neurologist, a man of certain and respectable age, ran away with full blast, his leather coat flapping behind. Maybe it was too much to ask, a patient to get reasonable answers to a question what is going to happen to her life, but reasonable answers I didn’t get, instead, I got evasion tactic lessons in action.

 

My husband stayed with me in the hospital during my eight day stay as much as he could. Our grandparents took care of our children, and my husband tried to do his job from my bedside. He needed to go home during the nights to be with our children, but he came back in the hospital as early as he could in the mornings and left as late in the evenings as possible. There were days though, when he simply needed to be away at daytime to participate in work meetings he possibly could not miss. I cannot tell you how grateful I am he was there for me. He fed me, he helped me drink, he talked to me, he just sat there, and made me feel safer just being there. He questioned the personnel, and he made notes.

 

I don’t think if it is coincidence or not, that the most visits from doctors – and all the most outrageous behaviour of nurses – happened while he wasn’t witnessing. My husband made notes about everything happening, on minute detail. When he had been away, I filled him in on the details when he came back. He recorder those; mostly I spoke so quietly he could not hear properly, so later he had to listen to the recordings with full volumes to be able to write them down. (My husband also took some videos and photos of me during my stay in hospital, but I haven’t been able to watch any of those, probably never will.) These notes my husband made are so detailed and throughout I can rely on them better than to any official records about the episode ever written.

 

On the first day, when the chief neurologist had a first flying visit in the room where I was waiting for something, anything to happen, my husband was not there when he asked about the dosing of my medication. Which, I told him, of course. Only, my husband, having been there, would have corrected me and my brain mixing all things and forgetting the rest, that the doses I told were the wrong ones. I had had to cut the dosing in half a couple of weeks ago, in order to get it last as long as possible, and it was these that I remembered, naturally forgetting the normal, everyday doses I had been having 2,5 years... (This is actually a relevant thing I always keep forgetting: I had been cutting down my medication and it had made me weak and partly non-functioning already before arriving in hospital, so of course my body reacted with even more force to everything, than if I had had the medication full on until the day it was turned off.) So, when later the chief neurologist announced that my dosing was so low it could only be homeopathic, he had made the calculations based on wrong information, given him by me, by mistake. That is exactly why I want my husband to accompany me to every single possible appointment: so that he could correct my mistakes. (He even reads these blogposts before I publish them, so I can be sure everything is as it should be, facts.)

 

When the chief neurologist came to visit on the second day, my husband was there. There was a nurse there, too, and another patient, who, in a room for two and only a thin curtain separating us, of course heard everything and said later that she’d willingly give a statement, if needed, about the discussion. I need to summarise the main points of the discussion, as it is really important information for you, in order to understand under what kind of understanding I was, during the length of my stay.

 

I told him that I was afraid this encounter affects to the relationship and care I was having in the neurological clinic. He assured me that this would not affect to it in any way, nor to my myasthenia gravis diagnosis. (Please remember this part. I’ll come back to this later.)

 

He admitted that he didn’t doubt the medicine helped my symptoms, but as the mechanism was unknown, they could not help me in the public health care, where everything was based on pure facts and known, accepted, proved treatments. (Although I pointed a few examples to contradict this, it didn’t help.) He also said that they had calculated my doses were so small they thought it was only homeopathic but that they didn’t know the mechanics, so they could not say anything for certain to one way or another. He also admitted they didn’t know how my illnesses and symptoms overlapped and reacted to each other, and how this medication worked in that combination.

 

Then he told they could perhaps try to find another medicine to help me, but it would mean they would need to test what doses would be suitable, as there was no experience from a case like me. Which, I pointed out, was actually just as “experimental” treatment my medication was said to be.

 

He told me, that he was afraid he’ll lose his license if he helps me and that way lose his comfortable retirement office, as he put it. If someone else was to write the prescription, he would not object, though.

 

He also criticised the specialist who had arranged my special medication but admitted that he didn’t know the case properly. Which he obviously and clearly didn’t. For a start, he had thought the specialist had lost his license completely, which wasn’t the case; the specialist still was the chief doctor of his clinic in the nearest university hospital, he just couldn’t take private patients. He didn’t even know that this very same specialist, MD and professor, had introduced such a concept as sleep apnea to Finnish health care system years ago – which at the time was regarded as total nonsense. This specialist also brought the first equipment for treating sleep apnea patients into the Finnish health care system. So, I pointed to the chief neurologist, the same doctor who had some time ago believed in the latest discoveries on the medical field and studied them, and who at first, had been considered as completely nuts but then proved to have been right all along, was now doing the same again, with another medical topic. Sleep apnea isn’t considered as nonsense these days, and being open for new discoveries, research, and finds, is essential for science to go forward.

 

 

Lesson Given.

 

I recently came upon this one poem that reminds me immediately of a moment I had with the chief neurologist in the intensive ward. I might sound arrogant quoting it, which, I can assure you, I am most definitely not. I quote the poem because it also reminds me of the meeting with this very same doctor a month later, when he said I was scary. I was scary because I was so coherent, peaceful, calm. I was scary because I did not yell, shout, or raged. (Well. What can I say?) But to quote one of my favourite contemporary poets, Atticus:

 

She was powerful

not because she wasn’t scared but

because

she went on so strongly

despite the

fear.

 

On one of the visits from the chief neurologist in the intensive care, we had a bit of an argument. My husband wasn’t there, but he has transcribed the recordings from my phone, including this entire discussion, so I could rely on that if needed. I don’t need to, though. It still is crystal clear in my head. How the sun shined. How the chief neurologist was standing on the left side of my bed. How he, a tall man, needed to bend down in order to hear me.

 

He told me that they had decided they could test ephedrine on me, if I was ok with it; that this would be an “acceptable” treatment, and that way everyone would be happy.

 

I asked him if he had finally read my papers explaining why I needed the medication; the papers explaining what part in me didn’t work, measurements and test results of showing it, and then how the medication helped and measurements and results to show it. No, he hadn’t, he didn’t think it relevant. Because my medication was not “approved” treatment, being only at the research stage yet, it was not acceptable treatment, and that’s it. (In Finland the health care system works like this: if it is written down in the lists of “approved” – whether it be medication, illness, diagnosis, symptoms – it exists. If not, it doesn’t. Who cares what the rest of the world says or thinks or does.)

 

I was lying in the hard hospital bed that made my back with all its twisted and crumbled spinal discs ache so much I thought I’d go mad, unable to move, unable but whisper. Completely defenceless, different kinds of monitors and tubes in me, in my sickening-coloured hospital costume, so tired I could have just slept forever and never woke up. But I got angry. How could anyone think they were so superior they had the right to dismiss scientific facts, humanity, and other people without even the merest hint of trying to find out the facts. So, I got really angry. I didn’t lose my temper, though, or my manners, I wouldn’t have had the energy even if I’d have loved to, so I just stated some well-chosen facts and truths.

 

He didn’t quite like it. Which came apparent later. Still, I don’t regret it, and never will.

 

I whispered him that in science, it’s no use to draw lines in concrete. They have been, are, and will always be inevitably blown up every now and then. It’s no use to hide behind the idea of something new in science being unacceptable just because it is too new idea to be a new norm. We need courage and faith, also called open-mindedness in science, to believe, to search, to find there is something new to be learnt. We’d be still drilling evil out from human skulls, if nobody hadn’t ever had courage to think something new instead.

 

But it was evident that courage and open mindedness wasn’t concepts exactly familiar with the neurological clinic’s chief neurologist. Of course, it is completely ok to differ in opinion, that’s quite an essential part of a free society, but I thought I’d try to make my point very clear. I knew already then that I could not change the decisions made, but I wanted to say something anyway. Or maybe, just because of it. I chose to not to remain silent. I chose to speak up. Because if I hadn’t, I would have regretted it, not to defend myself.

 

I told him, whispering, needing to pause between the words as it was so huge an effort to speak, how I was a living example how science changes, how it never stays still but flows, inevitably towards something new. I told him how, way back when, because my Professor in the University of Helsinki had been open to new ideas, I had had my chance to rewrite history. I had brought him not the finished MA thesis as I was supposed to, but a new draft, saying I realised something important while writing the last chapter on my conclusions and that I need to write the whole thesis again. Despite the deadlines approaching, I got permission to rewrite my theses, because my Professor said he believes in intuition, and if my intuition says I need to rewrite, so shall it be, write it. So, I rewrote my MA thesis in 1,5 weeks, with different conclusions entirely. Conclusions that were, as it was, completely contradicting pretty much everything written on Early Iron Age Israel so far. Conclusions so unheard of and so incredibly different that, to this day, I must say I am dumbfounded my Professor believed me, he heard me, that he supported my incredulous ideas.

 

In result, I started to write my PhD about a subject nobody, nobody had thought about, I got a rather grand funding for my research from The Finnish Cultural Foundation, I got a job in a project of Helsinki University and Academy of Finland, I got a place in a Centre of Excellence of Helsinki University and Academy of Finland, and only the sky seemed to be the limit. (And then, well, I got brain injury.)

 

It didn’t need much, actually, to change history. What it needed was, just as it always seems to be the case, some simple common sense mixed with the courage to think from a different angle.

 

While writing the first conclusions of my thesis, I stared at maps and realised that every single historical map of ancient Israel was taken out of context. There were lines drawn there that could as well have been made of concrete. Lines, modern ones, border lines that literally defined how we saw the history. There were modern state borders in every map of Ancient Near East. What researchers usually and mostly did was to look only inside those drawn lines separating different areas in a way we separate the areas to modern states. What I did, was just a simple thing, really, a thing that anyone could have done but for some reason never did. I chose to forget the drawn, artificial border lines we modern people have made, and think about the fact that three thousand years ago, such lines did not exist.

 

I told the chief neurologist all this. I also told him that the history writing of the Iron Age Israel had changed completely during the past few years. There had been a whole international conference about my PhD subject the previous year. I was a living proof that drawing lines of absolution isn’t a good idea. I was a living proof that new ideas generate new science.

 

I told him quietly whispering that I knew that one day the problems with autonomic nervous system I had and the treatment I had for it, would be internationally recognised and understood and, that one day, the science would be rewritten, when there were courageous and open-minded researchers to do so. One day. That I hoped that on that day he would remember our discussion and would finally understand what I was talking about. That what you need isn’t always absolute knowledge about something, but instead, listening to your instincts and intuition and being open to something new being possible might lead to you toward something indescribable.

 

(While I am writing this, and the world is filled with news about COVID-19 and the effects it seems to have on autonomic nervous system, I can’t help but remember this exchange of words. World is changing, science is changing, and some day, there is someone out there, who have the ability to explain things so clear and loud that these symptoms will finally be taken seriously. That patients like me would finally be taken seriously and get help. Some day. Someday, soon. I believe it. I know it.)

 

Afterwards he was silent for a moment. I don’t know what he was going through in his mind, he didn’t look me in the eye, but he told me, as direct a translation as possible: “Nobody is going to change the diagnosis, the main point is not to change it, it is not important. Important is to get you ok.”

 

Said the chief neurologist, the second time in three days. And then, he changed my diagnosis.

 

Maybe it was because I was too scary and coherent, maybe I should have not said those things aloud to a proud individual not used to anyone ever having the courage to object him, or maybe there are things I really do not know about, but to me, it looks like this. I was revenged. For what, I have no idea.

 

 

In the Air.

 

There are lots of questions hanging in the air, probably eternally. All the whys, of course, all the ethical questions why a patient could be treated with so little humanity, and all the maltreatment. There are actually not that many aspects I can point were illegal and could therefore proceed formal lawsuits or the like. I think they know the steps of the dance better than me, of course. Have had more practise. So, how can I actually prove that I was mistreated, when I was monitored day and night? Nobody cared what the monitors showed, and nothing was written down, but that is not the point. They did not risk my patient safety, I was in an intensive care, they could say. As for the rest, that is my interpretation, that is my experience, what happened, they could say. I feel I was mistreated; I feel I was abused, maltreated, mishandled. Is it what they always write in the medical files? The patient feels/experiences something. Not that it is actually happening, but that patient thinks it is happening. How convenient. But I will not accept that, as what I experienced was very much real. It still hurts to pee, after 3 years, because of the rough, brutal manners of some nurses. I still have nightmares, and it is very much real for me. We have the photos and videos of the time period, and my husband says that maybe I am not ready to see them yet, I need to heal first; they make him cry when he sees them. Those photos and some video clips are something that have been shown to specialists all over the world, by the way, afterwards, as to show what happens when you have the medical treatment I have, and when it is switched off. And I have been told there is not that many medical professionals, international renowned specialists of their field, who have been able to watch those without getting very, very horrified and emotional. So, there is something in there that is regarded as not normal, not right, not human.

 

But. There are several actual events, mistakes, or pure illegalities I can point out. One of them is the way my medical files were handled. The other is how some documents mysteriously vanished from my medical files, and some texts were altered. Both of which, I can assure you, is something that absolutely could not ever happen. It is very much illegal in Finland to finger medical files. All of these I have proof.

 

Then, there’s the case I mentioned in Part 6, about how in my case report there was written “Cancellation of the medication and strict surveillance. If needed, Diapam 10mg x 1-4 p.o. or 5mg x 1-4 i.v.” I think that one can be regarded as a serious carelessness if not even criminal negligence, as diazepam is very, very much indeed, forbidden to use when patient has myasthenia gravis.

 

There are lots of those tiny little obscure details, some of which I will return later as those “little details” are not actually that little, especially when thinking about the aftermath that still continues. And then, there’s this question of the mysterious medicine I was given. Twice. Medicine that knocked me out for hours, medicine that was said to be something but proved out to be something else entirely, and of which the chief neurologist commented afterwards, and this is a direct quote from the recording: potilaalle voidaan antaa mitä vaan, milloin vaan, a direct translation of this would be: “patient can be given anything, anytime”. We’ll go for that one soon.

 

Even though there is not that much to hold on to, I am going to make official complaint not only for the clear illegalities, but also about how they treated me even if I know the result already; nothing will be done about it. But, as I wrote above, “silence is a dangerous thing... If we close our eyes and ignore the injustice, we see around us, how can we expect others to behave any better? If we keep thinking there is no point in pointing out the injustice, that nobody cares anyway, how could anything be done about it?

 

 

End of Part Seven of Ten.