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.

Becoming a Parent

When do you become a parent?  Some go through heart-breaking agonies over countless years pursuing that very dream.  To others it’s a surprise revelation, a shock, maybe something that they weren’t planning on.  But most parents have a time period before the arrival to adjust, to plan, to adapt, to prepare.  For mammals, it’s called pregnancy.   These days parents can clutch a hazy, grainy photo and say that’s my child.  But are they parents in that moment?

I don’t think you become a parent until you have that small, fragile, vulnerable life form in your hands,  until you can feel the tiny, delicate heartbeat, until you have a life in your hands which is depending on you.  At that moment, two souls meet and join, a relationship begins and  every instinct and fibre of your very being swears an oath of protection and care to this small, fragile, vulnerable life form.

Being a parent isn’t just about having physical charge of a child, it’s not even about bloodlines or looking after one of your own species.  It’s about a very special bond between two beings, two souls, one dependent, one caring.

Even when that little one grows, leaves, fledges, matures, however they progress, that bond will always be there.  Your heart is joined to theirs and you simply care in the truest form.  Their well-being is intrinsically tied to your own, their pain is your pain, their hopes your hopes, their achievements yours …  Your heart soars with theirs.  And sinks too.

You can’t ever lose the emotional tie of a child, of being a parent to a little one.  It is more than memories.  It’s not facts or even really feelings.  It’s two hearts, two hearts that cannot be separated even when that little grows, leaves, fledges, matures.  And when the little one is lost, it is a heart that has lost part of itself.

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.)

Working Out

I’m not entirely convinced that ‘working out’ has the right connotation.  It’s a fairly positive term, indicating a deliberate choice to develop something through to resolution, that is to say, a successful outcome.

Working out does, of course, have other meanings.  In this modern age it is perhaps most often used as an exercise term.  It’s about putting yourself through some routine that challenges you perhaps, but certainly develops you.  There will be effort and strain and the results may not always be tangible, at least not immediately.  I can see how this compares with my psychological health situation.  Perhaps ‘working out’ is an apt expression for what I am going through mentally after all.  The routine may not be as well-defined, moving from one exercise or piece of equipment to another, but my mind does journey from one problem or issue to another, linking them, building ideas, trying to find (hopefully) even a resolution to a situation.  I also hope to come out the other side as a better, stronger, healthier person.

There is a key downside to this physical comparison.  I am a notoriously slow learner when it comes to motion memory.  The steps don’t sink easily into my grey cells and they definitely aren’t keen on staying there.  Learning to knit is a case in point.  I have laboured for many years to get to a point where just the basic skills come naturally, inherently to my fingers and my brain.

So it is psychologically.  I find myself dealing with the same problems and issues time after time.  Sometimes I haven’t learned what I need to do or say, sometimes I forget what I decided was the best course of action as emotions and misguided principles sway me yet again, sometimes life sweeps away the best of intentions or knocks you down with some other crisis or other.

This brings me to another use of the term.  Long again when maths was a compulsory part of my life not just an accidental hazard when cooking, shopping or knitting, I was often required to provide my ‘working out’.  I’ve never been good at this.  I often go straight from beginning to end in one move, somehow instinctually, relying on gut more than rational thought or science.  This doesn’t impress teachers and examiners; they want you to prove how you got to your end and why.  Sometimes in psychological health, you have to slow the journey down, however painful, and break it into steps.  One step at a time, leaving a clear trail of working out behind you, evidence that can be used again in the future, maybe even as protection.

As you may have by now guessed, I have been struggling with my psychological health.  (I really don’t like the expression ‘mental’, I don’t like the added connotations).  It’s funny how as my physical health improves so my psychological health declines.  The reason is simple, I have more energy.  More energy to fret, to worry, to grieve, to pain.  And I don’t necessarily get much choice in the matter.  The nights are full of flashbacks and nightmares and the days are spent moping around feeling miserable and lethargic.

Even after all this time, I still debate which is the worst state: lacking the actual energy to do anything or lacking the motivation (despite probably having the energy) to do anything.  I don’t know.  Both are paralysing, frustrating, laden with guilt.  I don’t like either in my life, there is so much more I could be doing and, more importantly, enjoying.

There’s been a lot of ‘stuff’, as usual, going on this year which I haven’t had the energy to process so when the energy started returning all those issues came flooding in.  My anxiety levels haven’t been brilliant throughout the year but increased energy takes it to new heights.  I’m fighting a lot of old phobias and problems that I have for the most part kept successfully under wrap for the last decade.  It’s a little bit terrifying to be dealing with them all over again.  As well as frustrating. And shameful.  I expect better of myself, I want more control.  I need more control.  This isn’t a pleasant ride.

So while my head sorts itself out (relatively, of course), I haven’t really been writing here.  My head is too full, too busy, too distracted, too overwhelmed.  I’ve had to work through some things, old and new, working out what is real and not real, what is true and not true.  I’ve been trying to find my feet and my place in the world again.

It can be easy to sometimes sweep the horrible, painful, messy debris under the metaphorical carpet but the pieces are still there and the heap just gets bigger.  I bury things, it’s not something I advocate, in fact I tell everyone else that they need to talk, that they must talk.  Maybe there’s a touch of the hypocrite in me.  I tell other people that it’s important to show your feelings and discuss things whilst I keep quiet about the things affecting me and cover up my emotions as much as possible.  Perhaps on some level it is easier.  However, life unfortunately has also taught me that is what people want from me, what is expected.  I try to deliver but the mountain under the carpet sometimes gets a little too noticeable.

So what do I need to do?  Figuratively, I need to sit down and clean up the mess.  I’ve been going through all sorts of stuff, old and new (it’s amazing what you can find under there) and I’ve asked to go and see someone about it too.  That’s a big step.  A very scary big step.  And honestly when all they can promise me is twelve sessions then I wonder if it’s worth it.

But at least it’s encouraged me to return to my old therapy of writing things down.  Of exploring and discussing things in writing.  I haven’t been able to write like that for a very long time; a few years ago someone took my book off me and decided to take umbrage.  It was just as well that the whole thing was a statement of fact and didn’t have a tad of opinion but I guess some people don’t take kindly to the truth, especially not in ink.  It hurt and did a lot of damage.  It’s taken a good few years to build the courage back up to virtually even hold the pen over the page.  But now I have returned, it was the ‘therapy’ that kept me going through quite a few dark patches in my teens and it’s been very hard to deal with the last few years without it.  I need to write.  It allows me to make sense of the world.  However, not being able to write in my own private space also prompted me to take up this blogging adventure, whether that’s a good thing or not I’ll leave you poor readers to decide.

I’m using something online to measure my moods.  The pedant in me questions the accuracy of it and well, asking someone whether they feel hostile is always going to provoke hostility.  It has been interesting though to use it to chart my ups and downs (especially as I thought my mood was fairly static but apparently not) and since I started writing it all out there’s been a definite mood improvement.  This is even more significant as I’ve just run out of that all-important medicine which I have been heavily relying on the last few weeks, especially when it comes to the anxiety (which it’s been barely touching), there was even days when I was taking double doses (I’m sure that the new GP will have something to say about that).

Writing helps me.  It’s a space for discussion, to turn things around and see them from different perspectives.  I can drag a statement from my messed up head then question it, each question prompting more meditation which brings me clarity and sometimes even resolution.  Sometimes it’s simply about getting the words, the ideas, the problems out of my head and onto a page, beyond me, free from me, leaving them there in the twisted loops of ink.  I can challenge myself and provide the working out.  I can move on but I can also choose to come back.  Writing like this has always felt liberating.  It makes me and my head lighter and clearer.

Maybe I am working things out after all.

Oh, and although I like writing, I don’t like carpet.  Never have.  It collects too much dust and bugs and rubbish.  Metaphorically and figuratively.  Can you get mental laminate?

 

 

 

Poem

I haven’t written poetry for many, many years.  For good reasons.  I know that bad poetry is insufferable.  There is no excuse for such literary crimes and they should never be admitted to much less published on the internet.  So here is my first attempt, I know not how to improve it, if there is any hope for it at all, so you can throw tomatoes, tell me to delete this post or offer up some suggestion for salvage.

Poem

(inspiration from Christina Rossetti’s Song)

Plant thou no roses at my head

Remember me or not when I am dead

The words found me as a teenager

One of the few things retained from school

Something I believed, still a belief

Sometimes dying would mean relief

~

In my garden now, there stands a rose

Shooting madly for the skies, it grows

Sweet yellow blooms that I laid

One painful day on my father’s coffin

A day, a person that I shall never forget

My face the endless cascades wet

~

In my garden now, there stands a rose

In the wet mud between its toes

I placed you in the earth

Storm damaged petals, just like you, just like me

I will not forget

My guilt will not permit

~

Plant thou no roses at my own head

Remember me or not when I am dead

I am not worth remembering

Yet I remember you all

For in my garden there stands a rose

Whose sweet yellow blooms keep your memories close

~

If anyone has any suggestions too as to how to format this properly, they would also be much appreciated!  This template seems to have a particular loathing for line breaks.

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.

The Loss of a Friend

Losing a friend is one of life’s greatest tragedies.  Maybe you knew it was coming, maybe it came as a complete shock.  Maybe you got to say goodbye and all those other things you just had to say, maybe you didn’t.  Maybe you were there at the end, maybe you weren’t.

Dealing with that loss is one of the hardest things in life.  But they say life does go on, they say that time is a great healer.  Maybe there is truth in those words.  The pain will slowly ease, like any wound.  Even if it leaves a scar.  And yes, you have had to go on with your life; there are other people who need you, other responsibilities that you must take care of.  But sometimes it truly feels as though life will never be the same again.

You see something on the television or in the news and you instantly think, oh I must tell so and so.  But you can’t.

Someone sends you something funny in an email and you instantly think, oh so and so will love this and you want to send it to them.  But you can’t.

Something great and amazing happens in your life and the first person you want to tell is them.  But you can’t.

Something goes wrong and you want to say, I told you so!  But you can’t.

You break something precious that they had given you.  You’re heartbroken and want to tell them.  But you can’t.

The seasons turn and you want to go to the beach or mess around in the snow with them.  But you can’t.

You get to go to a dream place and you want to share it with them or at least tell them all about it.  But you can’t.

Their favourite singer releases a new track and you want to know what they think of it.  But you can’t.

You find those photos that you’ve been looking for for ages and you want to show them.  But you can’t.

You find your feet automatically turning up their path on the way home as you go to visit them as usual.  But you can’t.

You think of going somewhere, a restaurant or a park or wherever, but it’s their favourite place.  So you can’t.

When you make plans for the future, you want them to be in those plans, you want to tell them all about it.  But you can’t.

Maybe time does heal, maybe it does get easier as the weeks, months and years pass.  In the meantime you have to live with that broken heart that no plaster will heal.  And even when you have ‘moved on’, when you are coping well, one of these little thoughts will come unbidden and that hole will be torn open all over again.