Random thoughts of the day

This year autumn has been aging much more beautifully than last year. Trees are still holding their glorious, golden dresses and the air is gentle kind of chilly. I love it. Although I do love November with its dark, cold, grey nothingness in which you can create your own kind of beauty, October has its charm. I missed it last year, being in hospital. This October I promised myself to celebrate life more than ever. 

Life, well, it is a funny thing, though. It can let you admire it in one moment in its full glory, in awe and grateful for the tiny glimpses of heaven it reveals you right there and then. The next moment it turns its back to you and lets you feel alone, bewildered, and betrayed. We had a pact, didn't we, me and life; we agreed life should go like planned and oh, how I had plans... I bet you have thought like that, too?

Well. My plans are always pretty small honestly, so it doesn't matter, I am quite used to the quirky ways of life by now. We go along just fine. You should always accept your friends just as they are, they say, and life is a friend, if you come to think of it. My plans for this October was to be able to get outside, to the forest, to smell the nature. It might still happen, there's a whole half of October left. My plans included also a hope that everything happened last year could be put to rest by now, and that's not going to happen. So I made a decision to try not to think about it this month at all, and continue sorting things out later. If one thing is sure in this life, it is that negative things have no tendency to vanish in the air. It might or might not be a comforting though. Like Tove Jansson wrote: All things are so very uncertain, and that's exactly what makes me feel reassured. 

I've been very tired lately. I know, it sounds silly in my own ears too. A spoonie that says she's tired. There's no news there. But when the tiredness is a new kind of one, something you can't quite put your finger on, and know you should, it bothers you. At least, it bothers me, as I am very well acquainted with my body and its remarkable ways of telling things in its own way. It's a necessity when you have chronic illnesses, to listen and understand your own body and its unique language only you can interpret.

Is it to do with the lab tests showing signs of something? Is it to do with my jaw that dislocated itself 40 days ago with a bang, when I was simply giving my little sister a hug? Is it to do with the fact that there's a new kind of pain in my body when I try to walk? Is it to do with my memory fading further and further away, in a fog I can barely reach? Does the two different kind of (benign) tumours in my head have their part in this all? Is it contemporary or is this all here to stay? I am sure there are lots and lots of people sharing these kinds of thoughts or concern with me today. Our smiley face might not reveal the things we battle with. Our calm and content appearance can be deceptive. 

I find that whenever I have problems (which is always, quite frankly, as I do have so many chronic illnesses, that when one has exhausted itself to be silent, another one has gained energy to shout out), I need my environment to be calm, peaceful, beautiful, and safe. I am blessed more than I can ever describe, as I have the privilege to live in beautiful, silent, peaceful countryside, surrounded by clean air, forests, and fields. I can admire the constantly changing view from windows, to see the season turning to another. To see deers and birds, foxes and rabbits, just looking outside of practically any window of our house. 

Another thing I am beyond grateful is our home; large, old, and beautiful, whispering its own stories and secrets. There's room for our whole family, and still a lot more, so we have been able to make it airy and serene. Lots of room for me to move with my wheelchair without needing to be afraid to knock things. Have you ever thought that there might be reasons beyond aesthetics for decorating your home? For example, I need chairs, tables, things to be exactly in their own place, as my brain doesn't always collaborate with me, and I can't understand or estimate how far or near things are. A chair couple of centimetres out of place can make my brain go all wild and force me to think it's a threat and coming right at me, even though it is certainly not jumping towards me. We can't have carpets as I could trip over them. Neutral colours, light, and airy, because my eyes can't handle bright colours, and so on. 

Oh, and I have 3 beds. Yes, I do. That part was beyond comprehension to one psychologist last spring. She thought I have made myself a glass bubble and banish all evil from my life living there, securely in that bubble, me and my family, and having so many mental problems my brain has prevent me from understanding it. Why? Because it is something entirely unheard of that one can be happy and content if one has chronic illnesses. One supposed to be miserable and utterly, completely depressed. One especially cannot have 3 beds as a practical solution to get the most of one’s restricted life. Let me explain: I have one bed in our bedroom. Simple, most people do. There's another sofa bed in our class veranda (orangery, conservatory, it has many names, but a room right off from our bedroom with walls made of old recycled windows, with a roof, but without heating), so I can be almost outside most of the year, but still safe from the heat and rays of sunlight, where I can hear wind and birdsong, see all my hundreds of peonies. Then there's a third bed in my study. The study I had for working, where I was supposed to write my research of the Near Eastern Iron Age, but instead of it, where I spend most of my days, resting in bed, and looking around me in this room that I still call my happy place. There's all my letter writing materials, all junk journal stuff, all things vintage and beautiful. And why not spending my days here, if I manage to get up from my real bed? 

I think I can never get over the idea of chronically ill people forced in a mould of a depression. If you don't fit into that mould, there's something suspiciously wrong with you. You are not entitled for happiness if you are ill. You are either faking it, or not sick enough. Or, better still, you are not admitting the facts to yourself! Namely, that you have subconscious mental problems. It is human, it is natural, and it is completely ok to be afraid of unknown, to try to explain the unexplainable, but it is outrageous not to admit the human element of not being omniscient. I mean, if you are not chronically ill yourself, you definitely should keep the moulds you have created and try to fit yourself in them, be safely there and think everyone else does it too, but you should never, ever try to fit others in the moulds you have created in your ignorance. You see, if you are chronically ill, you kind of forget all the moulds and what should or would or must - or not. You live, and you learn, and as Douglas Adams so well said, at any rate, you live. You either have 3 beds or not, but you make sure your life is filled with things that you love and enjoy, so that the things you miss or can't do, diminish. One might call it a glass bubble, or one might call it living.

Who catches you

It's been so long since I have written anything here. Every time I start writing, it seems so irrelevant, so, well, meaningless. My thoughts, my life, there's so much more important things for other people to do than read what I've written. But then, nobody is important, actually. We are all equal in one thing: we have given this one life and we all try to make most of it, in our own unique way. Someone might seem to live more important life than others, but in the end... Who cares? It's not about looks. It's about how comfortable we are being alone, just us and our thoughts, doubts, dreams, and what we make of them. So, if someone is willing to spend their time reading my blog… Here I am again, with my annoying habit of thinking aloud. 

You know I upload a lot of pretty photos on Instagram. I do it because I like it. Also, it's easy, just few lines and that's enough. But with a blog... I don't do lightweight. I feel I can't just pop here and splash a few pretty photos and say hey I had a cup of coffee and life is good. Even thought that might be the truth. My life is a mess of small pretty things in a chain, while the big picture is one of a person with chronic illness, with pain, with fatigue, with a constant struggle. While it's absolutely ok for me to not talk about it all the time on Instagram, I feel it's too shallow to put my life aside when I write a blog post. There's dozens of tutorials for example, I'd love to share with you, or hints, DIY things, pictures of my slow craft projects. But there's the problem: when I have written about my nightmare struggles with the Finnish public health care system, for example, how could I upload a lovely little tutorial next? 

Well, I could, naturally, it's my life too, part of me. Maybe I shouldn't think too much. Life isn't straightforward, anyway. It never is a highway with clear directions and well-structured paths waiting for you and you knowing it all by heart beforehand, with a map. Oh no, it's a tiny trail, with never ending weave, so you never know what's coming up next, the map has lost at some point, you have actually no idea where you are going anyway, and why is another question sometimes, too, and it might be even you have forgotten how you ended up on the trail at the first place. It's a mix of lost and found, hidden and visible, dreams and reality that sometimes encounter. So maybe I don’t need to take things so seriously, just post whatever I like.

You might remember I have been listening this one Finnish artist a lot, Juha Tapio. Well, I have not listened to anything for months, being too tired, but yesterday I found out he has a new album, and naturally I had to listen to it immediately. You might also remember that I (among probably many, many more people) have mentioned that it seems that there's a perfect, suitable song for everyone and for every situation in life. I have mentioned also that for some reason, Juha Tapio has touched my heart with his lyrics more than most artists. It wasn't a surprise then, that there was a song that reflected the thoughts I have been thinking a lot lately. 

His song Kuka näkee sut (Who sees you) is about who sees you, who remains when everyone else's gone, who catches you when you jump. And that's it, that’s been a lot on my mind. Who sees us just as we are? Fragile, broken, strong and vulnerable, all the beauty in us, all the ugliness inside, all the darkness, all the light. Hears our roaring laughter, hears our whispering cry when there's nothing else remaining.

I think that might be the one important thing in life that matters the most. You know, I have been blessed to have parents who have always supported me, I have known all my life they are there, ready catch me if I fall, if I jump, and then my husband who is willing to do the same, and who always remains when nobody else does, who would jump with me if it helps me more than catching me. Also, knowing God sees me too, just as I am, and is still there, willing to see me, gives me strength. How could I not feel privileged, blessed, loved, supported? How could I not feel strong, optimistic? It’s so easy for me, to see the little things. Maybe it’s a way to survive too, as seeing the beauty in tiny details in life makes me assured that there’s a point in the big picture, too, even though I can’t see it right now. It’s easier to believe in good, when you have someone beside you. That’s the point. How do they survive, who has nobody? What if there’s nobody who sees you?

Well, I might need to soften my gloomy thoughts with telling you that this is my favourite time of spring. Hundreds and hundreds of swans flying over our home, greeting us as they pass, gracefully and silently, sun catching their whiteness and somehow giving me hope and strength. There is a nesting place for swans not far from us and every spring, as long as I can remember, they have come, in pairs, in dozens, in hundreds, gliding just over our roof, greeting us, every spring, and then leaving every autumn. It surely gives a perspective to things, to time, and to life. It’s not long now for lilies of the valley start blooming, the equivalent of swans in the language of flowers. (Did you know that swan is the national animal of Finland, and lily of the valley the national flower of Finland? Suit perfectly, the silent forte, the invisible determination, the graceful, elegant beauty without any signs of showing off but still knowing their place and filling it completely naturally.)