Lights on the Verges of Darknesses

Sometimes you are given just the words you needs. Words you have inside of you but cannot connect to each others to have the meaning your whole being wants. Yesterday was a hard day for me. One more in a row of dark, seemingly hopeless stream of hours we define as days. I struggled to see the light, to hope. I put my feelings into words in my IG feed like this: 

I'm exhausted, but not going to give up. Every day is a miracle in itself, every day is full of those little things that makes the life worth living.
Everything in this absurd situation is floating like a strange universe, having a time zone entirely of it's own. Nothing happens and at the same time, too much happens. Too much is needed to be done, too much for such a tiny piece in an universe like me. But, I am lucky enough not to be alone, as there are so many of us in this situation. And, I have one huge advantage no other has. My dearest husband, carrying me when I cannot move, making sure I breathe when I can't, showing light when there is none.
The situation at the moment is, that every single bureaucrat seems to admit I need help, that my life is in danger, nobody can deny it. But nobody wants the responsibility either. So, still floating, not drowning though. There are too many other near drowning because their mind is not as strong as mine, who can't find the famous Finnish SISU because they are in too deep waters, maybe without a husband to say "hey, it'll be all right", without a job, medical care, social benefits, without hope. I have to be grateful for having such a strong caring surroundings. Also, I am as thick headed as only a person born in the Finnish province Satakunta can be. We tend to go through the grey bedrock, as they say. My brain injured head may not be able to take that many hits, but going through anyway.

Then, in the evening, I heard a song that was entirely unfamiliar to me. (As you may remember, I am a bit of a musical snob and still learning to listen to music less than couple of hundreds year old, so a song unfamiliar to me is not an exception, it's more like a rule.) This one: Valot pimeyksien reunoilla (Lights on the verges of darknesses). It couldn't describe with any greater accuracy the thoughts and feeling inside me I tried to put into words earlier yesterday. I'm not sure if you are able to watch this Finnish video, but if you can, please do, as you will then understand the radiant warmness, the glorious, light hope in my heart now. Just in case it's not available for watchers abroad, here is a link to the song on Spotify. The translation is a bit prim, as Finnish is much more flexible than English.

Lights on the verges of darknesses

 (Toni Wirtanen/Kaija Kokkola)

Don't believe in songs, they'll make you a dreamer

they could make you dig things

your mind tries to protect you from.

They tend to mess up all the thoughts

and leave you in chaos.

Every one of us is a path to somewhere

but the wisdom is to understand

whom to follow for a long time, when to turn away,

and that through a human, you can never travel into yourself.

All the endless beauty, all the insanity

all the whipping hopes, all the indecisiveness,

in the end, are pieces of the meaning, part of the mystery,

lights on the verges of darknesses.

Remember that all the greatest fears of yours

are reflections of your hopes, turn them around

and you'll find, in your hand, the keys to them

and that it's easier to forgive others, than stick to a grudge.

All the endless beauty, all the insanity

all the whiping hopes, all the indecisiveness

in the end, are pieces of the meaning, part of the mystery

and part of the truth.

Lights on the verges of darknesses

are sometimes dim and sparse,

you have a force sized of an ocean inside of you

which you can harness as your guide.

This is just an empty shell, which you must fill,

this is the brightest of lights, this is an endless night,

this is a heartbeat, this is an eternity.

Lights on the verges of darknesses

lights on the verges of darknesses,

lights on the verges of darknesses,

are sparse but exist.

All the endless beauty, all the insanity

all the whipping hopes, all the indecisiveness

in the end, are pieces of the meaning, part of the mystery

lights on the verges of darknesses.

Translation based on lyricstranslate.com, modified by harvinaisenkauniselama

Waiting for a Miracle

"Waiting for a miracle to come", wrote my favourite poet Leonard Cohen. You know the moments in life when you are too tired to wait, too tired to dream, too tired to hope? Then you also know that you do it anyway, because there is no choice.

I’m getting tired. Confused. Sad. Angry. Frustrated. Lost. Negative feelings I don’t like to feel as they are too consuming. Today I allow myself to cry and feel afraid and any feelings that keep appearing in my fragile, shattered body. Only, I cannot do it but few seconds at a time, otherwise they are too much. I’m not losing hope, I just can’t.

I have so much to say I simply cannot say a thing. The thoughts crumble over, they are as shattered and confused as I am. I cannot help wondering how it is that this happened again. You know, I used years and years to build a steady life from shattered pieces that used to be me. I worked hard. I did it. And suddenly, here I am again, collecting those pieces, deciding once again that this is my life and I’ll make most of it. Only, now that I know how it could be, how it was, I am – first time in my life – near a feeling called bitterness. Because, I had it all.

After years and years of fighting for my rights for decent life and help, I got it. I found a doctor able and willing to help me. Who helped me fighting for my rights in this piece of land called Finland to have medical care I needed and was entitled for. (Oh my, I am going to tell you all about it soon, but it’s a long story for another time.) I could build a new life from scratches. I had to give up my beloved research job. I had to give up most of things. What I did not give up was my dignity, my ability to see beauty in the little things, the gift to believe in miracles. Every single morning the past few years I have been grateful for being alive, as, you know, even that has not always been so certain either.

Do you know how it feels to live in constant fear of something happening that will destroy your life in an instant? I’ve learnt to live with it. Every single evening I have thanked my God that this day wasn’t it. I got one more day. After those years of nightmare, these past few years of light, middle of that familiar nightmare again. Fighting for my rights. Trying to get someone believing me, someone listening in me. Only, this time it is more serious than ever, and just cannot accept it how easily bureaucracy can destroy people. In a blink of an eye, and it’s done, no matter the consequences. Like, in my case, my life.

I just won’t accept anymore going back to the nightmare. I know better now. I know what it is to live a decent life, being able to breathe easily, being able to see, to speak (even my poor Finnish is better than none), to stand without help, to be able to go to bathroom on my own, getting out of bed by myself. I won’t accept any more being in constant fear of death, every single day, in front of my little children who will be afraid too if their mother will die now, this evening, tomorrow, or next week. I won’t go back to the life I fell unconscious for hours, couldn’t move, couldn’t see. I know I have rare illnesses, and a serious brain injury. I must live with them every single day, I have learnt to. I know my limits, I can laugh to my desperately poor memory, my lack of ability to remember to numbers at a time. That I need to rest after taking five steps. But I won’t accept anymore that I need to crawl on the floor because I cannot move in any other way. That I cannot understand what people say to me, to live in a fog thicker than universe, with no knowledge if it is real or imagined. I just won’t. I would have to accept it, if it would be because of my body crumbling. But no. It’s not that. It’s purely because of some bureaucrats deciding they just don’t like this one doctor. And making decision based on fake, forged proof, wrong assumptions, and personal issues. (This is another subject I have a lot to say about, but not now.)  Destroying my life. The life of our family. The life of thousands of other patients. I just won’t accept it.

I am still waiting for the miracle, but I also know that most miracles need a bit more than a prayer, a fairy godmother, and a wish. They need hard work. They need courage. I am not strong enough for hard work, but courage is the one I have left with. So that will have to do.

Long Live the Tears!

 

My favourite time of year is here; autumn has arrived, slowly and gently. The scent of homemade apple juice fills the air, I found myself lighting the candles in the evenings, and I can see stars in the sky again. (Did you know that during the summer, sun hardly sets at night?) My husband drove me to the forest a while ago, as I love the autumn forest with the scent, the soft air, and beautiful colours. Not to mention all the berries and mushrooms. Because we don't know what the future will bring us now that I'm denied by bureaucrats the vital medical care, we decided now or never, I should take the risk, and go outside our home, sit a car for five minutes and then sit in the forest, and vice versa. For you it might sounds like no biggie, but for me it's a huge effort, needing several days to recover. But it was worth it! I sat and watched as children picked chanterelles and berries for a pie, inhaled the fresh air and smiled. The pines older than time reached to the sky, hummed their soothing song and whispered it will all be all right.

Now, it doesn't seem like all right though, as not one single authority takes responsibility of anything remotely related to my healthcare. Or, well, that's not correct. I got an answer from Valvira, the kind and lovely bureau behind all my problems. I asked them (again) what they will do now that public healthcare - in my case the clinic taking care of my myasthenia - has said they won't take the responsibility as Valvira suggested. After reading their answer, I blinked twice and read the letter again. Then I had two options: either cry or laugh. I decided to go for the latter. Can you believe it? They kindly praised me for finally going to public health care and asking for a missive for the specialist medical care. (We need one here in Finland if we want for special healthcare in hospital clinics.) Oh my. This really makes me think how well they read their papers? I'm a bit worried now how much else they just don't read or understand? As I have told them I have been taken a good care for my myasthenia for several years now in this special clinic. In the more basic public health care side of things, I have had a good doctor for 9 years now trying to help me. Now they wrote that it's a good thing I finally has asked for help from public healthcare and asked for a missive for special medical healthcare. Wow. Thank you so very much Valvira, but that's kind of covered years ago with the myasthenia gravis diagnosis. As you would have known if you have bothered reading my letter properly - or for that matter - have any knowledge of the healthcare of rare illnesses. 

Oh, that was not all. That first one almost made me cry for fear, as it sounds terrifying. The one Finnish bureau responsible for the "safety" of patients and healthcare and therefore having decided my doctor might have used possibly harmful medical treatments which they cannot show any proof of... They don't read papers or have understanding how the medical care of rare illnesses is taken care of in real life. Nice. And so, so reassuring. 

Well, I decided not to cry because they lightened the mood so thoughtfully with this sentence:  "You should open-mindedly discuss - not only demanding the medicine you want - about your symptoms, diagnoses, and options of medical care with a specialist." Well, well. Thank you for the advice, but I happen to be familiar with the concept of good manners, believe it or not. And, what? I told them I have contacted my specialist doctor and discussed about things (very politely and nicely, if I may say so myself, as I have no intentions whatsoever to destroy the good relationship to the only doctors now taking care of me, thank you very much, I do still have some of my IQ left even after the brain injury) and they cannot help me.

What would you, my dear reared, think if you have just sent a letter to officials telling them you have contacted the specialist and discussed about the symptoms, diagnosis, and options of medical care and after the discussion, have been told that no, they cannot take responsibility, and now ask for further advice from the officials what to do in the mess they created in the first place, and get an advice to do remember good manners? Yes. You can either cry or laugh. I cannot cry, as it is too energy consuming, so I rather choose laughing as often as possible, as it's very healthy for my dopamine levels and feels so much nicer.

You know me by now, don't you? Always quoting something. Maybe it's a habit from the researcher side still living somewhere deep inside me. So naturally I found a song lyrics perfectly fitting this situation.

One of my favourite Finnish artists, maybe the one, as I just love how he put so much loving, gentle encouragement to lyrics, is Juha Tapio. I have been listening to him lately a lot, as I need some encouragement myself. This song, Eläköön (meaning long live), explains my feelings and thoughts better I could ever even try. So, please, you darling friend of mine. Even if you don't understand Finnish, please listen this while reading this translation, as the music is essential part of the message here, that tells more than thousand words. (Sorry my not so poetic translation, even the long live does not work well, as Viva would explain the meaning better.) Oh, how beautiful life is when living in a world of someone putting your thoughts into words for you. Thank you, Juha Tapio, you give me courage to go against the back current, and sing, long live the tears.

Long Live

lyrics Juha Tapio

To wonder the steady brightness of the cold nights

The rage of the oceans, and albatross,

The fingertips, the kiss, and the sky of the skin,

The clouds in the sandy road after the rain.

That’s why I sing 

"long live days that ran to the evening, 

their joys and works,

the courage to go against the back current, 

long live the tender nights 

and the love even scarred one,

sorrow too, the shards,

 because I needed that too, 

long live the tears".

To wonder the forest, 

the vastness of the continent, 

the gaze and wisdom of the new born, 

the lines of our faces and the star maps, 

to wonder the city in the twilight.

That’s why I sing 

"long live days that ran to the evening, 

their joys and works,

the courage to go against the back current, 

long live the tender nights 

and the love even scarred one, 

sorrow too, the shards, 

because I needed that too, 

long live the tears”.

Translation by harvinaisenkauniselama

Finnish CFS/ME patients Calling For Help

I'm calling for international help for Finnish CFS/ME patients. 

Finnish authorities have started a chase of CFS/ME patients and doctors, and left thousands of patients without help. Before CFS/ME, this hunt was for hypotyreosis; several doctors have been silenced, and patients left without help.

Finland has no official consensus of the treatment of CFS/ME - as this illness is not accepted as an illness in Finland at all. 

Now we need your help. We need official and unofficial statements of international/national CFS/ME or other patient/medical organisations etc. Especially needing a connection to EMEA and CDC.

Why am I asking this for you, personally? Because I have been shouted at, threatened and neglected by Finnish public healthcare for years because, and this is a direct quote "it's your own fault, you have too rare illnesses". I turned to the one doctor in Finland understanding my rare illnesses, and I got help. I mean HELP. Actual, real, efficient, medical help. For 4 years. Until last week, when officials decided that's it. No more treatments, as, a direct quote "these treatments could possibly be harmful", without never seeing one patient or consulting this doctor. 

Because of my complicated rare illnesses, my body does not tolerate the vital medical care it needs for myasthenia gravis (for which, thank God, I get help from public health care), without this medical treatment I had. Without it, my body functions stop working. I have about 2 weeks worth of medicine left, and not one single doctor in Finland dares to write a prescription now, as they are afraid of this hunt. Officials agree, I need my treatment, but nobody takes responsibility. They are afraid of something.

We need international help now, trying to convince Finnish authorities that CFS/ME is a real illness, needing medical care (other than CBT or GET) and justice. And above all, this one doctor needs his rights back, he's internationally distinguished M.D., professor, and researcher, and has dedicated his life for helping CFS/ME patients. 

If you have any ideas how to get a connection to your country's patient associations or EMEA or CDC, please send me a DM in Instagram (harvinaisenkauniselama), or comment below. Thank you!

Nothing Is Over

For all my friends, here and there, across the world. Thank you. Thank you for your offers for help, for your encouraging words, your friendship, and concern. 

I know it's sounds a bit funny, but you know what is the strongest feeling right now? Disappointment. I have told thousands of you, my friends, how much I love my country, how grateful and proud I am to be a Finn. How privileged we are, to be born in Finland. And especially, how well we are treated in our public healthcare. And suddenly... I would still want to be proud to be a Finn. I love my country, I love the nature, I love the honesty, the incorruptible integrity. But it hurts to notice how this bureaucratic system can swallow thousands of patients, and nobody cares. No, that's not true (maybe it is), but what I mean is, nobody takes responsibility of the decisions Finnish bureaucratic system is so capable of spit out every few seconds.

 

I'll tell you shortly what's happening here in Finland now. The M.D. taking care of me and hundreds of other patients has been told by officials now that he cannot have a private clinic anymore. Because it might be harmful. I mean. Seriously? Not one single facts are given to proof that argument. Not one. Not a single one. It just might possibly be harmful. End of story. So, let's restrict the rights and punish also couple of thousand patients on the way. No biggie.

You might or might not have heard about chronic fatigue syndrome (CFS/ME) at some point in your life. It's a highly-disputed illness, some think it's completely fake, some that it's a real thing. You know, most illnesses were considered as rubbish at some point, and only after there has been a way to measure or proof it exists, it exists in the minds of doctors - even if the patients are aware of the fact way, way earlier.

This is now the case with CFS. I have several other rare illnesses too, that doctors accept, and they believe that I am truly and honestly disabled and chronically ill, and I have medical care for these illnesses. However, with the CFS... Well. Here in Finland we are fallen badly behind in the medical development and knowledge, and doctors tend to think CFS means that you are nuts, faking, and lazy. There are no official treatments, no coherent agreement, nothing. We have one doctor trying to fight for us, who has over the years seen many patients and trying to help, participating to the international research about the treatment of CFS. He has used medication and medical treatments that are widely used internationally, harmless, with no proved or shown side effects for patients. The problem now here in Finland seem to be, that international research is not considered to be trustworthy here. So we have quite a problem, a vicious circle, as there are patients having real symptoms, and doctors not believing them because the symptoms cannot be proved with the current measurements - as the specific tests are only now being found in international research - and there is no official coherent consensus how to treat patients either.

So, while this doctor was abroad last week, in the EU conference (as the official, selected representative of Finland) trying to find consensus with the doctors all over Europe, about the coherent medical care for CFS patients in the European Union, our lovely officials decide that wow, by the way, we don't like this. And announce that they take his rights to have a private reception away. They don't care that patients are left without help, just like that. Most of them won't get any help from public healthcare, as they are, after all, only pretending to be sick, or, as the officials say: "in need on psychiatric treatments". Oh, how wonderful, thank you.

The problem is, some of us patients have a medication that literally keeps us living. Including me. I have, with the help of this one M.D., a medication that ensures my body to accept the vital myasthenia gravis medicine without which I'd have a myasthenical crisis in half an hour. Without this extra medicine, I'll have a colinergic crisis in half an hour too. With both medicines balancing my body, I'm just fine. So, I have a real crisis now. I have contacted all the bureaucrats imaginable, and then some more, just to be sure, and all of them agree on one thing. I cannot be punished like this, I'm just a patient, and public healthcare system should take now full responsibility of my care. And guess what happened? Public healthcare proudly presents: they cannot help me, as the treatment is experimental and not medically justified - without actually not even trying to find out, what might be the justification or medical reasoning behind it.

So, I am, now in square A again. Let's do this all over again, from the beginning. As I am not giving up. I won't lose hope. I want still to be proud if this country, not having to look for help from abroad. I want to still believe in justice, in kindness, in life. What I want is my life, that is now in danger because of some petty, small minded officials, because of money and because of jealousy. I want to live. I'm not that old you know, thirtysomething. I just won't accept I'd either die or continue my life in hospital tubes. 

When I was crying for the first time because of this (after some more really, really bad news, as I just have not the energy to tell you the whole dirty story), this one started to play on my Spotify... So, even if I've quoted it before, I'll do it again. The Sunrise Avenue, and Nothing Is Over. I want to believe that there's still time, that I'm not broken, that I'm brave. That nothing is over.

"Nothing Is Over"

Don’t turn away
There’s still time
A tiny moment
Don’t let go today
We can still shine
We are not broken
Scares to see that we are
A step a way
The one to take us
one way wrong way

Say nothing is over
Though everything’s crazy
Be brave and trust me
It’s not a game over
We gotta try harder
You gotta stay with me
There’s nothing we can’t reach
Cause nothing is over

I won’t turn away
Cause I can’t hide
The pain would find me
Don’t send me away
I’m on your side
That’s where I want to be
It seems to me that we are
Just like the rest
We could use a word of guidance
I hate to see that we are
One step away
The one to take us
One way wrong way

Say nothing is over
Though everything’s crazy
Be brave and trust me
It’s not a game over
We gotta try harder
You gotta stay with me
There’s nothing we can’t reach
Cause nothing is over

Say nothing is over
Though everything’s crazy
Be brave and trust me
It’s not a game over
We gotta try harder
You gotta stay with me
There’s nothing we can’t reach
Cause nothing is over

Nothing is over