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.
