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.
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