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.
