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