Time to Soar

It’s not a subject I have managed to accidentally stumble upon anywhere. It makes people easily uncomfortable. It is something that is often considered a rather embarrassing, avoidable, a subject to be silenced to nonexistence. Which is exactly why I am always bantering about it.

 

About being disabled.

 

I have written about it a lot during the past years, trying in my own way to give a small voice to a large subject. How being disabled is not something that defines me nor anyone else, how it does not – wonders of wonders – make my life miserable, but is only what it is, one aspect among others in my life. I’m still me, I’m still a person, I still have the same right to dream, to enjoy my life, to notice the little things, to smile, to laugh, to live, that any other human being, even if I have a disability parking permission.

 

(I know it makes me a terrible person, but it is fun to make people confused by smiling them widely in my pretty lace dresses while sitting in my wheelchair. I know, I know, I am a hopelessly bad, bad person. I should learn to act my part and look miserable, preferably wear black instead of dusty rose, and I should definitely forget those lace petticoats. But I keep forgetting it. I have too much fun and am too busy to live my life to remember it.)

 

But, instead of talking about disabilities in general, there’s one angle of it I would like to rise up properly to spotlight this time. It is a subject very rarely talked about. (In fact, so rare I have never heard anyone talk about it, beside me that is.)

 

What it is to be a disabled crafter.  Or what it is to be a disabled crafter, to be precise.

 

I know. It’s a huge subject, and I can’t ever reach the bottom of it, but I want to share some thoughts about it with you, so you could as a relatively healthy, averagely normal person (who actually can define what normality or average is, but you know) see the world from just a tiny bit different angle, or you could as a disabled crafter either nod in agreement and harrumph that finally someone brings it up – or of course, totally disagree from your own experience. Your pick.

 

 

 

First of all, a disclaimer. You need to remember that my disabilities are mine and mine alone. Others have different kinds of issues, but this is me now, talking from my point of view. I have mobility issues, limited amount of energy, and all kinds of cognitive problems, caused by rare chronic illnesses and a brain injury, but I do not have any kind of problems with creative functioning.

 

Nor with intelligent functioning, may I add. Somehow, people tend to think that having had an accident and getting a brain injury or just because they see me in a wheelchair means that I need to be spoken slowly, clearly, and preferably in short, simple sentences. Of course, what they do not know – and maybe if you just happened to stumble upon my blog, you don’t either – that actually I once was someone defined as quite smart; an academic researcher in Helsinki University and Academy of Finland. Although an accident did wipe most of my memory off more efficiently than any baby wipe does the trick with acrylic paint, I do still have some of that brain capacity left. I can handle long sentences, if I (want to) concentrate hard.

 

In short, my limits are physical, but they do not prevent me from crafting. Or being a human being, for that matter.

The subject of being a disabled crafter is wider and higher than Mount Everest, so I decided it needs the proper, thorough attention it deserves. So, in this blogpost I concentrate on what it is to be a disabled crafter in social media. Next time it’s more comfy areas I promise, like how I did find sometimes funny, sometimes unexpected, sometimes simple, alternate ways to craft with disabilities and so on. But this is a subject we need to tackle through first, because this is the reason for quite a lot of smaller subjects you might call problems if you are a pessimist (or a realist), or hiccups if you are used to these kinds of things and just shrug them off and have those rose-tinted classes of yours nearby.

 

And I have to admit that actually, this is a subject I have been hesitating to talk about, for reasons you will soon see. I have been writing this blogpost for months, trying to find right words, as it is not a light subject, easy, happy, comfortable. No. It’s a rather ugly one. And the words social media and ugly, they are a word combination that is, well, it’s not very nice or easy to be the one saying it aloud. You see, as in life in general, the subject of disability in social media is a subject uncomfortable, unwanted, avoided.

 

 

Although I have been a crafty, creative person all my life sewing, cross stitching, crocheting, paper crafting, doing some serious dolls house crafting, painting, tinkering, playing the violin and piano, singing, writing, drawing, reading, testing and exploring all possible new aspects of creativity all my life, I found mixed media art only a couple of years ago. (About three, I think.) Which, I can tell you, have been a blessing, to find my own creative voice, my own place in the world, after having had to bury my academic career.

 

This new crafty world has brought me immense joy. It has also brought me new, unexpected problems or issues to tackle. Problems or issues that are something I rarely, if never, hear anyone talking about but which should be talked on and on, until from sheer exhaustion, the subject is emptied of any taboos.

 

The world of crafting is a beautiful one. The social media’s crafting corner is full of supporting friends, shared dreams, kindness. It’s a creative haven, a community I feel grateful to be part of, and I have not once experienced anything but love, kindness and genuine support. But. (There’s bound to be a but. I’d not be writing this otherwise.)

 

I know I am not the only person on planet Earth who loves crafting and have restrictions, but it is a topic simply not spoken of in social media. I understand that not everyone wants to share their private struggles, that some people just want crafting to be their happy place, where they can be an equal part of crafting community without anyone knowing the real-life battles, and I understand and respect that.

 

Also, I know there are people like me, who think of nothing of their disabilities and restrictions, as that is just what normality looks like for them, simply a subject not worth mentioning. I, on the other hand, specifically want to talk about it. (I think I might lack the bashfulness button, someone forgot to install that on me in birth. If you find one extra button wandering about, it’s probably mine. If you send it to me, that’d be great; I could use it in one of my mixed media canvases and name it Wanted: Shame.)

 

I do know that there are many people out there, who would want to share their struggles and their victories, who would want to ask for advice or yearn for peer support but are too intimidated to do so, because any sign of real-life weakness isn’t something social media is very good at handling. And I think if one corner of the world of social media, it is the creativity corner that should be open to everyone. And by everyone, I mean every single person, regardless their skills, restrictions, disabilities, hidden or in-plain-sight anything. The only thing that should matter is their love, their passion to create.  

 

 

But. Think about this… Every time – and I am serious – every single time I mention the word DISABLED in my blog, in my Instagram post, in my Facebook page, in my Facebook video, in my YouTube video, anywhere in social media, every single time I lose followers.

 

Every single time I mention the word, I get considerably less likes than otherwise. If I mention it in my videos, I get thumps downs. Lots of them.

 

And believe me, I have tested it over and over again. It. Is. True. I still am a researcher through and through, even if these days a disability pensioner (sorry, just couldn’t resist), so I tend to notice all kinds of unnecessary details.

 

To test the phenomenon more, started to use #disabledcrafter on Instagram and my follower number dropped couple of hundreds. I mentioned the word in one post and lost fifty followers more. And so on.

 

I mentioned in one video (on purpose, just to test the reactions) that I need to use a bigger brush because it’s easier to hold when you have mobility issues, and I got angry face emojis. I haven’t even read any video comments lately, just because, well. I just don’t.

 

Luckily, I am not a person partial to follower numbers or defining myself according to likes on social media. That’s not why I am bringing this up, how many likes I get, how many followers I have, it simply isn’t relevant for me. What is relevant is that there are people out there who do care about these kinds of things. Which is why, when I noticed about this phenomenon, I decided to repeat the word even more often. Just because I have a voice. There are too many who haven’t.

 

I hasten to say that this phenomenon is not something that is restricted to crafting world only. No, it’s just the way of the social media, I know. I have a good example for you.

 

After suffering from my second brain hemorrhage a couple of years ago, I lost my native language Finnish for a year or so and spoke Finnish only with a strong Swedish-German-Russian dialect and with no grammar whatsoever. I wrote about it in my personal, private Facebook I had for people I called my friends, people I actually recognize when passing in street, people who I would gladly ask in for coffee if I saw them. Instead of getting supportive comments, I suddenly found I had almost 60 friends less. (That is not much when you think in terms of general FB friends amount people tend to have but at the time I had only approx. 120 friends to begin with, knowing them all in real life, too.)

 

Just because I happened to have had a brain hemorrhage and talked about it to my friends, they vanished. Now that is social media for you. It just can’t handle real life with its darker shades, it thrives only from the light bits.

 

But I also have a lot to be thankful for social media, too. I have got friends, real, actual, lifetime friends dear to me. I have a place I can feel loved, supported, appreciated just as I am, and I can share my passion for creativity and beauty with them. I would be a lot lonelier without my friends all over the world that social media have brought to me, and it is those friends I will treasure like most valuable gift ever presented to me. I have been able to take my first, tentative creative steps towards the yet invisible trail while my friends have held my hand and shown me the way, and they have witnessed and supported me while I have made the trail as my own and widened it to a path. I could never have done it without them.

 

And what makes me most humble, grateful, and so incredibly touched to tears is that I can proudly say I am part of Finnabair Creative Team, team that supports, encourages, and urges me to talk about this subject aloud, and not just aloud but with such a loud voice that others can hear it to the far corners of the world. And that is one thing that I could not say nor experience without social media. So, there really is is no such a thing as only black and white. There is the whole rainbow of colours reflecting in everything.  The creativity corner of social media is open to everyone, I know it is, I have experienced it myself, me being welcomed with open arms. But, in the end of the day, it’s open only partially, as I have myself witnessed, too, and that is something I’d love to see changing. I cannot change social media, I’m only one person. But I can ask you to join me and make the creativity corner equal and yes, accessible to everyone, together.

 

Think about it like this. What if most people have actually been installed the bashfulness button in birth that I lack of and are not as stubbornly Finn as I am? What if they actually do care what others think? What if there are insecure, vulnerable individuals out there, who do care how many followers or likes they have, and hence never ever can imagine they could openly talk about their restrictions and problems they face with crafting, in fear of experiencing the same phenomenon I am constantly crashing with? Could it be possible that instead of pressing the unfollow button, we all could share some collective support for anyone openly admitting they are vulnerable?

 

You see, besides the aspect of social media and its lack of being comfy with anything not-completely-over-the-moon-happy and the collective intake of breath shaking its foundations with a mere mention of the word “disability”, there are some things in real life that normal, relatively healthy human beings cannot understand if they have not been through it all themselves. And crafting with disabilities, my darling friend, is absolutely one of those. 

 

I want to shed some light to what it is to be a disabled crafter not because I want sympathy. I do not. I and my disabilities are fine, thank you, and can handle us pretty well, and I think that this might be another reason it’s a subject never discussed. Any crafter with disabilities does the same: concentrates on the good things (the actual crafting) instead of wasting their time and energy to pointing out the problems and obstacles and difficulties they face and conquer all the time when crafting.

 

I am a person not easily disheartened (I am a Finn, after all, we invented the term sisu), so I took and still take it all as a challenge to climb over. But what if there is someone out there, with chronic illnesses and a flaming desire to create, who is discouraged by thinking about all the obstacles they know they would face, just like they face in every single thing they do, every single day of their one life?

 

I want to reach out for them, to hug them, to courage them, to take their hand and say that hey, darling, beautiful, brave you, don’t be afraid, you can do this, you can find a way, let me help you with the first steps and soon you’ll soar. 

 

 

My Story Part 2. Fight for Your Fairytale.

This is Part 2 of a story I'd love you to read. But please, please darling, start from the Part 1., here.  

 

Part 2. 

 

The Beginning.

 

I can pinpoint the moment when everything started to change. 

 

It was one gorgeous, sunny day in early July 2012. I remember I was wearing a turquoise skirt with fuchsia roses in it. It still fitted me, just, with my growing pregnancy belly. I was writing an essay about the early Iron Age I urban culture in the Ancient Near East, for a conference in Oxford, the deadline was approaching fast. I had only just recovered from mycoplasma and the harshest pneumonia I had ever had; it had taken months to recover, but now I was full of energy and felt the flow I always had when writing my PhD, the passion of my life. 

 

This is the starting point. The me that was but is no more. The me, who was capable of writing her PhD and was working for the Helsinki University and Academy of Finland, in a Centre of Excellence. The me, who was enthusiastically excavated old pottery shreds on the deep slopes of northern Israel, in extreme heat, in international archaeological excavations. The me, who had capable of heavy garden work like singlehandedly digging out several dozens of huge bushes from one place and wheelbarrowed them to a new one, digging planting holes and planting them, or made flower bed paving using heavy rocks. The capable me, who also could vacuum or shower herself. Cook and walk.

 

On that July day 2012, my husband asked me to take a look of the last pieces of vintage window frames he had just found for our glass greenhouse, still in the boot of our car. I excitedly hurried to see them. Perfectly worn and tattered, they were exactly what we had been looking for. And suddenly, without any warning, everything changed. The heavy back door/tailgate of our Audi station wagon collapsed into my head, with full force. The hinges had broken, both at the same time. How unlikely, how unexpected. How pointless. 

 

It hit my skull with full force, the metallic lock piercing into my head, and I fell unconscious into ground. The only thing I can remember about it was that as my husband tried get me up, I thought I could not show how much it hurt, when our little boys were standing there, they were not to worry.  

 

Well, this story isn’t about a brain injury. But it was what started everything, as after that, not only had I lost my memory, but also my health. For reason completely unknown to me, my chronic illnesses I was living quite friendly terms with or I had no idea even existed inside me, got worse or were triggered to life, and it probably was the moment myasthenia gravis got quite an imposing hold of me. Maybe it was the infections I had had the previous months and the brain injury together, combined with the fact that I was pregnant. I will never know for sure.

 

I was pregnant with our daughter, and as the hit triggered constant and serious contractions, it also meant very, very throughout patience practices the next 6-7 months. So, I rested on our living room sofa the next months and tried to learn a bit patience. (Which, I can assure you, was a mountain to climb for a person always used to do something.) Later I have been incredibly grateful for that experience. This kind of bulldozed the concept of patience into my life, so when later I became almost completely bedbound, I was already familiar with the silence, the idleness; it was much easier to come in terms with myself and my disabilities.

 

I wasn’t diagnosed with the brain injury at the time, as my pregnancy meant no proper examinations could took place, and as I spent my days in bed anyway, I had no idea of the damage actually happening inside my brain. I had no idea of the magnitude of problems, as all I could see were the memory problems, with the difficulty to form and find words, English, Swedish, and German popping into my talking out of nowhere, and my total lack of balance when I agonisingly slowly walked the only journey allowed to me, from bed to bathroom and back. 

 

From that summer moment when my brain was irrevocably injured, it took 7 years to accept the fact that I am not going to ever be again the person I was until then. I got my disability pension last year. I only resigned from University of Helsinki this autumn. The journey I needed to take, I can assure, was not easy and was not made easy for me. During the following years, when I tried to keep my body from falling apart, when my chronic illnesses really started their invasions and when I lost all the control over my own body, I did not lose hope. I was completely (and utterly, overly optimistically) sure I’d be able to continue my research and my former life. But as slowly and inevitably as it turned out I couldn’t, also as slowly as inevitably I started to build a new life. I had the broken pieces. So, I built a new one of them. What choices I had?

 

 

 

The Battle.

During the next couple of years my body surrendered completely, first slowly, then acceleratingly, until I was almost completely bedbound and needed help. I couldn’t take care of our children, our home, of myself. There was nothing, nothing wrong with my mind, but my body refused all collaboration. I collapsed, nearly every day from the tiniest of effort to do something, unconscious or almost unconscious and unable to move or speak, before the very eyes of our children. I had difficulties to breathe, suddenly I just didn’t know how to do it. My husband was the one who carried me and our family through it all. Nobody knew then that something inside me was horribly wrong, that myasthenia gravis was creeping inside, destroying the connections between my brain and my muscles. 

 

(You may or most probably have not heard of myasthenia gravis, as it is a quite rare chronic autoimmune, neuromuscular disease, so I will summarize it shortly for you. It kind of mixes the map between brain and muscles, so that the messages do not go through and when tired, exhausted, after exertion, they simply do not know the way. In more accurate words, myasthenia gravis causes weakness in the skeletal muscles, the ones responsible for breathing and moving parts of your body. Activity worsens the weakness, rest improves it. So, from experience, I can tell you it’s all right if your feet forget suddenly how to function. But when your lungs do it, it’s not quite so funny anymore.) 

 

But, even if my body was a shadow of its former competent, strong me, I didn’t lose hope, during those years. I later laughed to one MD marvelling my astonishing ability to be flexible, to adjust and to cope (his words, not mine), that I don’t know how to be miserable or depressed, life is too beautiful and interesting for that. Everyone has their low days, everyone is tired and has the right to feel sadness and cry, but I simply think that there is too much to see, experience, learn, understand, and feel in life to be able to feel miserable for long. Maybe there is something wrong with me. (Well, that’s what some health care professionals accused me later, actually. I’m too happy and content with my life. There must be something wrong with me. Seriously? Health care professionals, seriously?)

 

It took a couple of years of hopeless pleading until anyone in public health care took me seriously. (Maybe it was because I smiled too much. I’ve been accused for that, too.) Everything I knew was wrong with me was explained to be because I was a mother of 3 little children. Stress. Tiredness. Hormones. You know, life. Of a woman. I could not remember when our children were born, not a thing about their baby times, not a single book I had ever read – and with my former stunningly exact photographic memory I can assure you I was not going to let anyone explain that breastfeeding could have that kind of effects on anyone, especially I had finished breastfeeding some 2 years ago. And those were only the memory hiccups.

 

Finnish public healthcare system is, in principle, a very good thing and don’t get me wrong, I am grateful for it and having so many foreign friends, I know how privileged we are having such a system. Except, it would be nice if it actually works. If patients would be taken seriously. If it would not make one feel you are for the system and not the other way around. Let’s just summarise the next 3 years like this... 

 

After lots of shouting, lots of threatening, lots of indifference and pure neglect, all these from the public health care professionals, and after lots of patient reasoning, secret tears, and even fear from my part, someone actually decided to took some tests and it was found that not only I had anaemia so bad that it had already damaged my heart and brain, I also had four kinds of malfunctions in my heart, a brain injury diagnosed as severe, and lots of diagnosis related to heart, lungs, and so on (the so-on includes diagnoses in every single inch of my body they examined in me) and finally in an ENMG, they find I had myasthenia. 

 

 

During those years of uncertainty, I was treated like a garbage. With disrespect, with open hatred, arrogance, and well, indifference. It clearly was only me, a theologian, who could think there might, just might, be some things in this world that exist even if you cannot see them. No health care professionals seemed to be able think that way. I tried to be kind, be myself, polite, well-mannered, even if some professionals never had heard of those kinds of attributes. When I was shouted at while at reception, I simply sat as straight as I could, smiled and met their eyes and asked politely for just a bit more specific argument. Later one doctor told me that this is the exact thing that makes me a difficult patient. I am not afraid of them, so they feel uncomfortably underhand. Come on, really, we live in a modern society that is stated to be equal and well-educated. I might be a former researcher, yes, and I do have a horrible habit of thinking everything through and making uncomfortable questions to make things clear in my battered, injured brain, but I am not a scary person. I just ask questions and look them in the eye. Or is it that I do it with a smile? 

 

Lately, I have been quite grateful for these horrid encounters, actually. I hadn’t quite so naïve and optimistic attitude towards the health care system most people still seem to have, thinking the system actually works in a way it should, system for the patient, not the other way around. Finnish public health care system’s purpose is to maintain and improve people's health, wellbeing, work and functional capacity and social security, as well as to reduce health inequalities, says Finnish Ministry of Social Affairs and Health. It would have been even more crushing discovery, to experience the total lack of each and single one of those points in the statement, if I hadn’t witnessed the defects myself, first handed, already earlier.

 

Every day during those years of uncertainty I woke up – and still wake up – grateful that it is a new day in my life, full of possibilities. A bit like Moominmamma said:

“Well, it’ll be another nice long day tomorrow, and it’s all yours from beginning to end. Now isn’t that a lovely thought!”

One does not help but love Moominmamma. Not only she knows how to serve her pancakes (with strawberry jam), she is also a clever one. 

 

I learnt not to take life for granted. After that little incident in 2015, when I started to cough blood and fainted in the hospital reception of an ophthalmologist – who had just told me my myasthenic eyes would not be fit for researcher work anymore – and was then whisked through the corridors of hospital into ER where they suspected that my fragile heart had finally and literally broken, I learnt it the hard way. But it wasn’t broken, my heart, except for metaphorically speaking. For a researcher to say she could not continue her work… It’s a death sentence, in a way, to your life at is was.

 

I got home. I got more time. Time, I swore I would use wisely. I decided I would grateful for everything that life would throw into my way, be it lemons or marshmallows or axes. I had to adjust to the idea of not being capable of my research work anymore. And that other incident in 2016, when I got a brain haemorrhage and couldn’t spoke proper Finnish in a couple of years… These incidents reminded me how fragile life really is, and all the thromboses during the following years underlined the message.

 

I had had my patience rehearsals while pregnant, and now had reached the Next Level 2.0 Rehearsals. I learnt more and more every day. I realised I could be enough as a mother, even if I could not bake or craft with my children, but it was enough to only be there, always there, to listen, to hear, to understand, to kiss. I realised I was enough as I am. I had to learn myself what Virginia Woolf meant when she wrote: No need to hurry. No need to sparkle. No need to be anybody but oneself. That we are all enough just as we are. 

 

Even if I could not remember things, or vacuum or wash dishes, or had barely strength to take a shower, there was still a life to live. Mine. My only one. So, I thought I’d better make it a good one. 

 

 

I believe in miracles. I believe that, as Albert Einstein said it, your whole life is a miracle. I also believe that miracles do happen. But, to quote the Fairy Godmother (you see, I take sourcing my citations very seriously), even miracles need a little time. I would like to readjust that, though. Even miracles need a little help. If we just wait our whole life that some miracle would fall upon you and happen, well, we can wait – our whole life, and moan about miracles not existing and get bitter, stop believing. But, instead of twiddling our thumps, we could just start helping those miracles to emerge. 

 

I started.

End of Part Two of Ten.

My Story Part 1. Broken Pieces Are Still Beautiful.

 

My darling friends, while writing this, one song has given me strength, so I want to share it with you, right from the start.It has given me strength to write my story, with its strong message. It’s in Finnish, but here you can listen the song with English subtitles, and here is my translation:

FREE

Erin & Kaija Koo

 

I'm fed up with all those

Powers that controls my life.

That take you along and make you

fall in love with them.

 

I don't know whether it's wrong,

That I refused to die upright,

Because that's how it would have ended up

if I had stuck on yesterday.

 

Something held me there,

It was so horribly strong.

And it did not want to let me go.

Almost like flesh and blood,

Bigger than the mountains and the sea,

That's what it grew into in my head.

 

I don't wait for surprise,

I don't hold my breath.

I want to leave all that behind.

This escape of mine has been run to its end.

I'm not brave,

Nor immortal,

But one thing I know,

What my heart has known a long time.

This escape of mine has been run to its end.

 

I'm not going to feel fear.

Although I'm afraid it isn’t up to me,

But I think a human is stronger than it.

I'm going to let it die,

I don’t give it space to breathe anymore.

I don't owe to it anything more.

 

I will build my home alone,

I will heal myself alone.

And I will force myself to keep myself together.

I'm not that miserable rag,

Whose heart has been sucked dry,

I won't build a room for it in my house.

 

I don't wait for surprise,

I don't hold my breath.

I want to leave all that behind.

This escape of mine has been run to its end.

I'm not brave,

Nor immortal,

But one thing I know,

What my heart has known a long time.

This escape of mine has been run to its end.

 

Although I'm afraid it isn’t up to me,

But I think a human is stronger than it.

I'm going to let it die,

I don’t give it space to breathe anymore.

I don't owe to it anything more.

 

Translation by me.

You wear your broken pieces beautifully.  - Atticus

 

I love that quote. I have always said that I have had to learn how to build myself again from the broken pieces of my life, as we all so often need to do.  Gather the broken pieces and start building a new life, for what choices do we have?

 

I want to think I have managed to build a beautiful one, with all its cracks and just that tiny bit uneven pieces. My favourite quote of all time summarises it well:

 

There is crack in everything, that’s how the light gets in. -Leonard Cohen

 

There is this one sharp, ugly piece there, though, in my life, that I understand needs to be there, not painted over, but accepted as it is, part of the beautiful picture, and in a way, making it all the more beautiful by being there. I just wish I knew why I needed that one painful piece. As this one piece does not stop bothering me, with its sharp edges, I have known for a long time I need to get it out. I just have not had the courage nor the strength to do so.

 

Some of you know fragments of this story happened three years ago, but for those who don’t, a word of warning. This is not a fairy tale story, an airy light happy one, this isn’t something you are used to connect with me, with my rose-tinted, overly optimistic, sparkly glasses through which I see everything. You see, I know from my very own experience that it really is darkest before dawn.

 

But I let you in a secret; I still believe there is most beautiful dawn, always, after the darkness.

They couldn’t break me in the end, I still have those rose-tinted glasses on. And that’s why I am writing this. I wish that never, ever again a person in Finland would need to go through the same I did. I know it is a wish that cannot be true, but at least I can think that it isn’t because I remained silent.

 

This is going to be a long, long, long blog post. (So long, I need to divide it into smaller chapters.) If something, I have learnt to trust to my friends all over the world and how they have carried me, taken care of me, taken hold of my hand without asking, and being there. They have taught me, a Finn, to ask for help and that, my friends, is quite some achievement from you. So, I ask you now to keep me company, even if it’s going to take a while, when I rewalk the longest hours in my life –  I know I can make through them when you are there.

 

 

 

 

I need to stress one point, right from the start. I have not dwelled on it, these past years. I have been happy, content, filled my life with love, passion, inspiration, creativity, all thing good and beautiful. I have the most wonderful husband one could ever dream of, the most everything children. We live in a beautiful, old house, with a huge garden, so even if I rarely left home, I can enjoy my life with wholehearted content. While writing this, our cat, softest and sweetest of Sacred Birmas, Mr. Hemingway, who loves to follow me everywhere, who shows his love for me by eating as much antique lace as he possibly can, and who is my very own guardian, sleeps on my legs, warming me. He knows I need comforting. I lie in my comfy bed we have arranged in my study, surrounded by beautiful autumn sunshine pouring in from the two windows, pretty vintage treasures and flowers arranged on selves. Life is good. There is no reason for me to feel dark, ugly bitterness towards life. Life has been gentle to me, kind, delighting me with its astoundingly, delightfully strange twists that always, always end up being something good, something that I could have not wished for better. It has taught me to trust everything will be fine, in the end.

It’s all the starker, the contrast, this one incident, this one fragment of a life that does not quite fit into the big picture. Not because it is ugly; as I said, contrast is needed in everything, to highlight the main point. If something is too pretty and too harmonious, it isn’t real. For being real, there need to be something contrasting it, something that breaks the unreality, cracks the shell and shows how beautiful the core is. I have no need to try to mould the ugly piece into anything else. I just need to understand why, as, after three years of trying, I still can’t figure out. For me, there is too many questions unanswered, too many whys, too many reasons to think it was not at all necessary, as such.

 

You see, there is some things in life you cannot affect to, but you can usually learn to adjust to. These things are usually the ones affecting only you and your life and you can choose the way to think about these things, how to react, how to adjust, adapt, and it does not have direct consequences on others. Then, there are things that you must, need, or can choose how to react to, how to respond to, but these chosen actions affect not only one self’s life, but also others.

 

And for me, the true measure of a human being is how you choose to affect others with your acts.

 

Not very unlike this one, not so very unfamous, ancient principle called Golden Rule. Treat others as you want to be treated. In other words, "Do unto others as you would have them do unto you", Matt. 7:12. (You need to remember, there’s still a theology researcher there, inside me, who love references, quotes and citations.)

 

As much as I have had time to think about it through (and there are, believe me, quite a few dark hours of night included in three years), this is the part completely incomprehensive to me. Why they choose to act towards me in a way, I can assure you, none of those would have not, absolutely not, in any circumstances whatsoever, ever in the whole wide world, accepted as decent, righteous, human treatment towards themselves.

 

You can choose to hurt or not to hurt. With – or even lack of – your behaviour, your deeds, your words. You can choose how to put your words when you speak to another human being, and without needing a degree in human ethics everyone could define there are at least three ways. You can address another human being either neutrally, hostilely, or friendly. Your choice.

 

You can choose to remain silent, in good or bad. Sometimes words left unsaid can be as deceitful, hurtful, or malevolent behaviour as spoken ones. Sometimes words left unsaid can affect to another human being as much as words spoken.

 

You can also choose how to act, behave towards another human being. Somehow, you would think that you would be treated with dignity, equality, and keeping in mind, let’s say, basic human rights (so well manifested by for example, United Nations), when you encounter with public authorities in a modern, independent, constitutional, welfare state, like, well, Finland, wouldn’t you?

 

But as it is, I can’t get over it. It creeps and drowns me night after night, waking me crying, unable to breathe. I have tried to push it down, not think about it, forget it, but still it waits me around every single corner, every single bend, every single night.

 

They tried to break me. And they nearly succeed. They would have, if they hadn’t taught me well. I was in hospital, being as vulnerable as a human being could be, completely defenceless, and all they could think of was ways to make sure I would be broken into such tiny pieces I could never, ever built myself again. They wanted to make an example of me, I think, although why, I have no idea.

 

To understand what actually happened and why, and why everything went so horribly wrong, first I need to tell you a bit more about myself. You see, you cannot take one single moment from life and think you can understand the person. Maybe it is the old researcher me here thinking aloud, but I think you need to understand the context. Cambridge Dictionary defines context as the situation within which something exists or happens, and that can help explain it. I need to explain the situation within which my episode in hospital took place, so you could understand it better.

 

But, my darling, my hand in yours, I can say…

 

I'm not going to feel fear.

Although I'm afraid it isn’t up to me,

But I think a human is stronger than it.

I'm going to let it die,

I don’t give it space to breathe anymore.

I don't owe to it anything more.

 

End of Part One of Ten.

 

An update

Earlier I wrote a blog post CALL FOR HELP, this: http://harvinaisenkauniselama.blogspot.fi/2017/09/finnish-cfsme-patients-calling-for-help.html

Now the situation is… We CFS/ME patients in Finland are treated like lunatics. I have heard of urgent invitations for psychiatric examinations, of diagnosis codes changed from neurological to psychiatric, prescriptions gone missing in the national medical database. Officials state now that the proper treatment for CFS/ME in Finland will be GET and CBT, even if these treatments are considered word wide as highly questionable. This all happening in Finland, celebrating the 100^th anniversary of independence. 

As for myself, I’m in hospital right now, as my public healthcare clinic promised to look into my condition. I have been here now two days, and only things happening are that although nurses are very friendly, I really need to look after myself. I don’t get my myasthenia gravis medication unless I specifically ask for it, and it’s a vital medical treatment, after all, for MG. My hydration levels are too low, and my kidneys are not functioning well, but nobody is interested. Usually I’m extremely well looked after in hospital, not now. It seems nobody wants to do a thing in fear of consequences. Not even basic medical care.

I was told today that the official stand of public healthcare is now that they will not support my medical treatment that I have had for 2 years and 2 months without any side effects or harm. They do admit that it’s good for me, that I need it. But they won’t prescribe the medicine for me now that my own doctor can’t. (He can’t because officials have restricted his rights, even if this is not actually legally justifiable decision.) In fear of consequences by bureaucrats. And that's a direct quote.

They admit I have so many rare illnesses that nobody knows how I react to medicines. So they are now trying to figure out or experiment how they could replace a medical treatment that is scientifically justified and used for two years with excellent results. Because of bureaucracy, the medical treatment supporting my autonomic nervous system will be closed down, and nobody knows how I’ll react. This is more like torture than proper medical care. Patients can and must be treated individually and off label treatments can be used if they are medically justified and safe, says Valvira, the bureau responsible for this. And not single one doctor in Finland dares to do so now. 

I won’t give up. I need plans B-Å now, but I’ll go through every one of them. I’ll stay in hospital for couple of days now, but I’m determined to go home and find a way to continue the one treatment helping me to cope and balance with all my conditions, among them myasthenia gravis, alpha-1-antitrypsine deficiency, Ehlers-Danlos syndrome, CFS/ME, brain injury and much more. There must be a way to find justice for me, for other Finnish CFS/ME patients, and the doctor in trouble now after trying to treat patients as humans.