Before My Time

I gasped, trying to clutch reality, trying to stop the world from completely slipping from my fingers.  I can do this, I tell myself.  I cannot believe otherwise.  If I do then where will it end?  The world, my world, my life, everything will fall away, it will be the crash of a tower of bricks, a slight wobble here and there, the slow bend of the tower  but then the inevitable crash.  It will fall.  And all will be lost.

I tell myself to hold tight, I grip my hands tightly,  cramped-ridden knuckles that rarely seem able to straighten anymore, as if life, health, self, world could be something tangible, something that could be grasped, something that could be kept held of.  I can’t keep hold of them; they’re more slippery than fine sand grains.  And the tighter I grasp, the faster they are squeezed from my grip.  I cannot win.

I gasp, every breath is a struggle.  The physical world around me swims.  The ridged concrete path swirls in a blur of motion.  The metal fence posts alongside do tricks that no fence post should ever be able to master.  The world will not stay put.  It will not allow me to get a handle on it.  I cannot keep it still.  I grasp out at it but it moves, slippery and fast, and unreachable.  Everything is beyond me.

You’re not meant to get motion sickness walking.  But I do.  It’s not like I have mastered some locomotive state.  Or maybe I did once.  Once upon a time, I was able to keep up.  Keep up with what?  Life, self, health, world.  No more.  I am slower than the World’s Slowest Walkers.  I know.  They keep overtaking me.

I struggle to breathe, like an asthmatic at the end of a sprint.  But I have gone nowhere fast.

My body ridicules me.  Me, that self I dream of being.  I cannot be.  I am crippled and handicapped and fighting a body whose war I barely even understand.  I am conspired against daily.  I lose daily.

I no longer feel safe walking by myself.  I don’t have the breath to think let alone scream in defence.  I feel shaky, vulnerable, weak, frail.  I am not myself anymore.  I can’t walk out into the world with the bravado that I used to.  I can’t take the time to enjoy a moment of solitude or the world around me.  I am too busy fighting.  There are days when I walk so slowly past front gardens that I get to know each and every blade of grass by name.  I don’t admire flowers, they get boring when you’ve spent five minutes walking passed the same one.  They taunt me, moving free in a breeze.  They have more speed than me.  They move whilst I am motionless.  One day snails will overtake me.

I muddle words and can’t remember whether I had conversations out loud, in my head or in my sleep.  I can’t remember what needs doing or even what I have done.  I forget where I am halfway through a recipe.  I forget ideas halfway through sentences.  I forget.  I forget.  Me, who has always been a memory keeper.  Me, this is my role, this my usefulness in the world, because I can remember.  And I can’t.  What have I left?  I console myself with sarcastic humour, reminding myself that at least at some point I will forget that I ever even had a memory.  But at the moment?  Oh no, I remember.  I remember the glory days.

The glory days that never were.

A golden age only exists in nostalgia, a better time compared to current woes.

And I do remember that there have never been glory days for me, I have never succeeded, not even at being myself.  And now I feel perhaps I would have a chance but it is all being dashed away from, like that tower of bricks.  I cannot stop them falling, I cannot stop the present and I dread the future.

My hand shakes.  I am weak and vulnerable and pathetic.

This is not me.

This is not who I want to be.

This is not who I should be.

I forget names, faces become foggy.

I mix up all my nouns.  If I can even remember any.

I get my sentences backwards.

More vicar, tea?

I don’t know if the world notices but I do.  I notice.  I see every single mistake, every single failure.  I, who have tried so hard my entire life to hide my weaknesses, my problems, now have them writ embarrassingly large across each and every conversation and each and every day.

This is not me.

The slow, painful steps that I am taking through life and the world.

This is not me.

I sit motionless, lost, unable to find the strength to do anything.

This is not me.

I cannot form sentences.

This not me.

I cannot remember.

This is not me.

But it is.

It is who I have become.

I didn’t get a choice.

I would have liked a choice.

Because I would really like to have life back.

I want another chance.

But something tells me it’s too late.

The sand has tumbled from my hands, I never had much anyway, and it cannot be found again.

I have lost.

Everything.

I have lost me.

Loss of Self

(Can I tell you a secret?

I grieve.

There are moments when I am broken in spirit and overwhelmed by a profound sense of loss.  I try to remind myself that there are countless thousands, if not millions, of people who are in a worse position than I am but my heart won’t listen.  I put a brave face on to the outside world, set that stiff upper lip but all the time my heart is breaking.

Most people feel that it’s handing over your self-care to another person that causes a sense of loss, a sense of shame and a complete loss of dignity.  But the reality is that illness, chronic illness, will have robbed you of every last shred of dignity long before you get to that stage.  That dignity comes from our identity, our sense of self.

I cannot think of anything worse than anything to abandon self-care to a stranger, someone appointed by a remote, impersonal power through a collective, communal sense of duty to look after those unable to look after themselves.  There is perhaps slightly more grace in being cared for by loved ones but maybe that’s the point and I speak too rashly and harshly.  Think of just the nursing profession, strangers who dedicate themselves to the care of the needy and vulnerable.  Sometimes we do have to hand ourselves other to strangers, to specialists and to experts, who are best placed to help us.  I think what is needed is trust, we need to be able to build relationships, to connect and to trust, whether that person is a stranger or not, when we hand over the very last vestiges of our dignity and identity.  Perhaps the sense of shame comes only from myself.  A sense of failure too perhaps.

There is that moment where your life divides into two parts, the before and the after, that moment when a doctor or other medical professional gives you that diagnosis.  Perhaps you only hear incomprehensible medical names and terms, perhaps you only comprehend that sense of fear, dread and threat.  But what is lost, and will be lost, is your identity.

If illness only deprived us of being able to climb Mount Everest, of running a marathon every week, of being able to run six international businesses at once … well, wouldn’t that be bliss?  Few of us really would be impacted after all.  But illness, chronic illness, is so much more than that.

I don’t have that clear demarcation, I don’t have the privilege of ‘having been’, I have been ill all of my adult life and in some ways I know nothing else.  That makes me sad, sometimes I feel cheated of my potential, of being able to have a life that I choose.  I’m not one for self-pity but grief doesn’t always rationalise, it is a tidal wave of loss, from which there is no escape.

In fact, it’s when things are going better mentally, when I find a focus that I feel this loss the most strongly.  I cannot be who I want to be.  I cannot be who I am.  I disappoint and frustrate myself.  When I can see so clearly what I want to do, what I want to be and yet this mongrel-beast gets in the way, refuses to let me be, never mind achieve, I grieve.  I have found my feet in one sense but cannot crawl from the bed in the literal.

It’s absolutely crushing.

I don’t want to climb mountains, or run marathons or international businesses, I just want to be me.  All those things that I have worked so hard to achieve, I have worked so hard to find myself and to be comfortable in my skin, to have that dashed away from me, it’s heart-breaking.

And so often it’s the trivial things where I feel that sense of loss so keenly, the sort of thing that you wouldn’t ever think could really matter or be important.  Things like being able to cut vegetables properly.  But when you think about it, it is a skill and one that maybe you had to work at.  It is something small that says a lot about us, whether we cook, whether we enjoy cooking, whether we’re any good at cooking … Instead the sharpest knife becomes blunt and clumsy in uncoordinated hands, food mushes rather than slices, there is no technique and if half the pieces are of similar size, well then, that’s a miracle in its own right.  And all the while, there is that voice inside your head that tells you ‘this isn’t me’.

But it is.

Illness isn’t a straightforward, downward slope to the total loss of dignity either.  It often ebbs and wanes.  Sometimes this can be more painful; you can’t accustom yourself to a level of loss before proceeding, or descending, to the next.  What you can do one week, one day, one hour may quickly become impossible.  You can’t take anything for granted.  Each new setback is enough to make you howl.  If you had the energy.

Our sense of identity is tied so closely to the things that we enjoy.  Not being able to do the activities that we enjoy, not being able to eat the foods that we enjoy … illness leaves no aspect of us, of our identity, untouched.  But it’s not just about not being able to do the things that we enjoy, take for example my knitting.  I love knitting.  It’s one of the few activities that I can consistently manage, although in varying proportions.  But it’s so much more than just a simple activity; it’s so much more than just one of those things that I do.   It’s an expression of personality, of creativity.  It is the way that I express myself.  When a week goes by where I physically cannot knit, I feel that loss keenly.

I don’t know if illness, personified perhaps, does target those specific skills and those things that so clearly define us as us, sometimes it feels like it does, or if perhaps we just feel the loss more in those areas.  If you never had a particular skill or talent then you probably don’t notice or feel that loss so much.

I know that there are people whose memories are bad, totally fallible.  I live with one of them.  This means I have even greater responsibility as a memory-keeper, I remember my memories and those of others.  I’m known for my memory abilities.  I am a guardian of family history and stories.

No more.

I cannot remember what I did yesterday never mind last week.

I cannot remember words or dates or things that I need to do.

Someone will tell me something and I will wonder out loud how they know that.  They then tell me that I told them, just a week ago.

Behind me there is a great void of nothingness, a black hole where memories could and should exist but I remember nothing.

I feel a great sense of shame, embarrassment when faced with the reality of this loss.  Actually, it frightens me more than I care to admit.

In so many ways, this is a loss of self.  I’m losing a skill that I am proud (!) of and I risk losing my history.  In a way, I become homeless, that sense of belonging comes, in the greatest part, through memories and remembered connections.

I have a fear of losing things, my biggest fear is forgetting.  It is why I write, it is why I photograph.  I’m terrified of forgetting.  I always have been.  Memory, remembering is important to me.  And now I am faced with blank spaces, black holes and that nagging feeling that there really is something that should be in my head right now.

And it’s becoming more obvious.  It’s hard to hide your memory problems when you can’t remember anything.  I’m oblivious to what has gone before, I risk repeating things or putting my foot in it, like the example above.

Illness takes everything away from you that is precious, independence, skills, talents, memory.  There is no dignity in being ill, just a profound sense of loss.

I grieve.)

My Heart in Spring

~ Trigger Alert ~

I’ve written about Spring before, mentioned it in other posts but I can’t help returning to the subject again.  Well it does come around at least once a year, after all, and this year we’re having several attempts at it, or so it seems.  Maybe it is my favourite season but I haven’t really thought of it like that, I don’t play favourites, however my moods do rise and fall with the weather, well to some extent as well as to their own particular vagaries too.  A little more sunshine, a little more warmth and the world feels like a better place.  Or at least a place that I can deal with or face up to better.

This is what Spring does to me and my heart.

Spring encourages a curious, and, in my case, an unusual, strain of optimism.  Spring can feel like new beginnings however much you’re dreading the rest of the year.  Spring brings hope whatever the circumstances.  Spring sends my spirits soaring.  Spring makes my heart beat a little faster.

That is what Spring does to me and my heart.

But there is another side to Spring.

Spring, like all the seasons, is a milestone, a marker in the year for various anniversaries.  There are things that I try to keep hidden from my conscious self, things that aren’t filed neatly in the filing cabinet of the mind ready for recall  (my mind’s not like that anyway, as you might have suspected) but tossed hurriedly from sight, pushed away on dusty shelves in an attempt to forget.  Thoughts and memories that I would rather remain unbidden.  As the temperatures rise and the sun shines strong again, these are the things that start to gnaw away at my mind and heart.  My heart beats a little quicker in Spring, not because of anticipation, but because of anxiety.  I am lost and hurt and afraid and broken all over again.  My heart  aches without really knowing why until unwillingly I do some mental arithmetic.  I make the effort to forget but it still surfaces, my hearts know the dates better than any diary.

This is what Spring does to me and my heart.

Looking for Inspiration

It’s funny how some days your mind and soul just go blank, or worse numb.  Whatever it is you do creatively in your life creaks to a halt because you just don’t have the inspiration or motivation to do it.

I’m a bit of a Jack of all pastimes but master of none.  You already know I knit, albeit with relatively little skill or aptitude, but there are other creative things that I also enjoy doing.  And probably have not have yet mastered either.

I love photography, taking photos.  For me one of the most important things is how the camera allows me to record the minutiae, the mundane small things that are fleetingly important but are so easily forgotten.  I’m scared of forgetting.  That’s what got me started back in the days of hideously cheap and plastic-y film cameras whose blurry results are saved for posterity in equally cheap albums stashed in boxes in the loft.  The cost of film processing was something of a dampener on my enthusiasm (or rather one that my mother imposed!).  Now I’ve gone digital, I regularly despair of the sheer amount of files I can generate in a single month.  Even a month of not doing much or going anywhere interesting.

At the moment though I am struggling with my photography.  I’ve lost my inspiration and motivation.  Sometimes one or the other, sometimes both at the same time.  One or the other is actually worse, slightly more frustrating.  I’m still taking the narrative photos that record the silly little things that happen day by day (I’ll tell you about the DIY another time) but the creative shots are few and far between.  I just don’t seem to have it anymore.

It’s strange.  Life’s not particularly bad at the moment, or at least not as bad as it has been.  During crises then you’ll probably finding me still snapping away, distracting myself from the pain and trouble.  Creativity is a distraction and comfort in bad times, it can bring you something beautiful and fulfilling when everything else around you is so bad, painful and grey.  So I’m very grateful that that creativity stayed with me through such dark times and yet now, even though things maybe aren’t so bad everyday, I don’t have it.  And I would like to.  I want to be inspired, I want to be motivated.  I want the comfort, satisfaction, fulfillment, happiness and beauty that creativity brings.  A little ray of sunshine.  But where do I find it?  Where do you find yours?

What Shall We Talk About?

I know!  Let’s talk about the weather, universally popular, universally safe.  Or maybe that should read ‘universally UNpopular’ as we never seem happy about it do we?  Too cold, too wet, too dry, too hot.  Never satisified with what we’ve got, we’re eternal pessismists so that even if we’re forced to admit that the weather is lovely then we will also have to add that oh well, the flowers are all dying it’s been so hot or that the forecast is for torrential rain for the next two weeks.  Is anyone content with their weather pattern?

It’s been raining here.  In fact you could mistake it for November at times what with the murk, mist, rain and wind.  It’s had everyone grumbling about another rotten summer.  Never mind the fact that two months ago we were in the middle of a heatwave and everyone was grumbling about just how hot it was!  It’s still fairly warm, especially when you compare it to the temperature that we usually have in November.  Or even most Augusts!

I take the weather as it comes but never get wishfully optimistic.  I aim for rain or snow for most outings or special occasions and then work from there.  The result is that I’m usually pleasantly surprised whilst everyone else is disappointed.  Sunshine for an August wedding?  You better start wishing for snow at least then anything would be an improvement.

It always rains heaviest under the trees.  Sometimes it seems as though it is still raining under the trees even though it has dried up on the rest of the street so you either get caught, surprised, by the sudden drips that splash down on your head or you look a right numpty still clinging to your umbrella.

It was a particularly miserable day the other morning when I was walking into town.  Never mind the lashings of rain, it was wet everywhere; it was creeping up my trouser legs, it was sneaking under the rim of my umbrella, it was splashing down my hand holding the umbrella.  And yes, I had decided that I needed to go the one and a half miles into town in such weather.  Of course.  It always makes sense.

You know how a sound, a smell can take you straight back to something, somewhere?  I was walking along under the trees when this especially vicious drop plopped down on the black taut fabric of the umbrella with a crack like a shot.  It startled me.  Then the very next second a car came around the corner and drove up the road with its trailer bumping along the uneven rough road, it sounded just like the rumble of heavy artillery.

And it took me back.

Many years ago I was visiting my grandmother in the winter, it was a dark evening and I wasn’t yet even in my teens, when an artillery practice started.  Oh my goodness!  It was absolutely terrifying.  The house was shaking.  The windows and doors were jangling in their frames.  We had been sat in her conservatory but we got out of that very sharpish and went to sit elsewhere.  The glass panes were shaking above our heads.  It felt like it went on for hours.  You just stopped what you were doing and waited for it to stop, hoping that that would be very soon.

It was unbelievably frightening and yet this was not a war, those were not ‘enemy’ troops, it was just a practice session.  We were not in any immediate danger despite appearances to the contrary.

This occured at about the same time that there was a war in the Balkans.  We had just heard of people’s experiences of it, of families hunkering down in cellars for some protection and being shelled at from a distance of one mile or so.  The practice session was taking place forty miles away.  I had those people in my mind that evening and it added tremendous depth of understanding to their account.

I brought this story to mind with a drop of rain, I lived through nothing as traumatic as they must have.  I wonder how they’re still affected by their experiences, whether they’ve ever shaken free from that terror.

It also brings home another powerful lesson: fear is always relative.  Fear is a personal concept, it is one of our own understanding or sometimes our lack of understanding.