Le Re-tour

Today is ME Awareness Day.  How do things look for us? In comparison to five years ago when I last wrote things are much much better. Then I really had no hope of any treatments nor decent research. Today, we are getting more mainstream media attention, it's often far from correct with its facts but at least we're more in sight. We are still misunderstood as to how the illness affects us but slow, steady steps forward are being made.

Research is really coming along and I do now have hope for the next few years.  However, we are still woefully under funded to really make the huge breakthroughs we need.  As a community we are stronger than ever with some incredible advocates who have made this all possible and to them I send my humble gratitude. But to get a huge groundswell of activism going is hard due to the nature of our illness and the worst of us are house and bed bound. We need as many 'well' people as possible to do it for us, so if you'd like to help out in any capacity, I can definitely point you in the right direction.

So there is at least some sparkling lights of positivity for the future, the question is can they help the sickest and those who have had this illness for a long time. Those who have had it for a shorter time have a far greater chance of recovery if intervention happens quickly. This is so encouraging for those being diagnosed now, and it is great news for all those to come. Hopefully soon no parents will have to watch the illness ravage their children & then have them taken away by child services or psychiatrists. Hopefully no one will need to take their lives due to not being able to stand the pain and utter discomfort any more. And hopefully no one will have to die slow, horrible deaths with years of wasting away forgotten and untreated. But for now, this is still happening.

If you feel moved to help us here are a couple of great charities to give a small donation to or just spare a thought for us and share details of the illness with someone today.

http://www.ukrituximabtrial.org/iimeukrt%20donate.htm

http://www.microbediscovery.org/donate.html

http://www.meresearch.org.uk/

Windows in Time

I have a window, a brief, clear window. The sun shining brightly through it, always open to let the cooling breeze waft over my awakened body. It’s been a long wait this time around, in fact I’d really started to believe that the window had closed for good. However, here it is it’s been here now since the beginning of January. I know some of you will believe and want me to believe that it’s the beginning of the end of my illness and I know that comes from a good place in your hearts. I wish belief was enough to cure me and all the other sufferers of this disease. If belief could do it, I tell you all the hope and the pleading that we all do everyday would be enough to cure all ails. Sadly belief will not cure ME just as it doesn’t cure cancer.

But my window has been left ajar and I’ve climbed through it. My feet are dangling over the edge and the feeling of freedom is palpable. I can feel the air passing through my toes, the rough edges of the brick walls against my soles. My hair gently being tossed by the wind, the air gently touching my skin, bringing a freshness long forgotten. Of course my freedom is laughable to a well person; it means that I can go out for coffee or lunch once or twice a week or have a visit from a friend. I’m able to have a good chat without feeling absolutely dreadful and every motion or word being such a weight or making the room spin. After each of these meetings though I’m exhausted and I need a few quiet days to get over them but I can live, just a little. So many other sufferers don’t get these “better” periods. The fact that I do makes me so grateful because when I am at my worst for long, extended and drawn out periods I know what it’s like. Some people have been in that state for years without the slight relief that I get from time to time.

How do I know that I'm not going into remission after four years. I know because I still feel ill; constantly symptomatic. Also I’ve been here so many times before and experience has taught me that I just need to embrace these moments and enjoy them whilst they are here, taking care not to over do things. I usually get a couple of months until I go back into a more severe state of illness, the worst periods always last longer than the easier ones unfortunately but for the moment that is in the future. This illness affects us all differently and this is how it affects me. I’ve accepted it for what it is. I am just overjoyed that finally after a year of hell the seal on my window broke and I have the energy to climb up and sit on the sill.

Old Shoes

Like old forgotten shoes in the back of the cupboard

Waiting to found.

To be dusted off and polished,

Once more to be in fashion, soles upon the ground.

The comfort of the ages gliding around the floor.

The feel of the familiar,

My bare feet regaling, alive once more.

La Dose

Fais-moi signe.

Un clin d’œil

Ou deux.

Trois même,

Si ça te fait plaisir.

Pour ma part une moitié

Sera suffit.

Je ne suis pas gourmande,

Juste en manque.

Here's the translation.

The Fix

Give me a sign.

The blink of an eye

Or two.

Three even,

If that’s what works for you.

For me just half is enough.

I’m not greedy,

Just in need

Of a fix.

Wilfrid

Will fried

Will fried pie eyed

Will fried cried

"La plus bonne de toutes les filles,

Une fille terrible."

Will fried

Will fried disguised

Will fried tried

To explain, falling over

Her apron strings

Paris 1998

Gone

Rattling 'round the jingle jangle of my time

The isidious, seeping sentimentality of your lost soul.

Screaming as it peters out,

Knowing it will be consecrated to the dwindling periphery

Of tomorrow's crucified dawn.

Manchester 2009

Trust

I

Me

Myself

I

Me

The one

The only

I

Not you

Not he

Not she

But I

The be

The end

The all

I

Manchester 2004

Untitled 1

This is not my time.

You take me to the heights wrapped in radiance,

Yet engulfed by blindness

I drop into the cradle of my sadness.

Awoken I writhe to see my senses,

Stare at their numbness and await the winging of my soul.

For that will be my time.

Indonesia 2000.

Brain Stains

The silence echoing around the cathedral of my mind says it all.

Reality speaks though slurred

Leaving brain stains on the floor.

Jigsaw splatterings form the words

You've kept locked up in that treasured box,

Carried since eternity.

Come take the rusted key from this proffered palm

And let lightness free.

Manchester 2009

In View

Your gentleness still shines through.

I know there can be no more,

And I won’t ask it of you.

Just tenderly accompany me on my journey,

In compete ease,

Side by side as before.

Follow my steps from afar

As I shall yours.

Manchester 2009

The Merry Round-and-Round

Here comes the Merry Round-and-Round,

Up and down,

All through town,

Distracting us from wake time.

He smelled her need,

She took no heed,

Her senses open to his seed.

Sat her on a pretty horse,

Led her on a happy course,

Upon the Merry Round-and-Round.

Until she fell upon the ground,

Arms outstretched

In a heap, feeling cheap.

Then came the sound

Once more abound

Upon the Merry Round-and-Round.

Paris 1997

The Mirror

Don't cut there!

Why not? 

Just here, just a nick.

Slow and intentioned. 

You're only thinking of yourself, 

And the pain you'll have to endure.

That face in the mirror unshaven 

With shackled eyes asking, "Why?"

Well it's either you or me in that stance.

Who is it to be? 

Broken Words

Apparently we utter 15,000 words on average per day. I wonder what my mean is? During a typical day I have one five minute conversation with my mum, and that's it for oral communication. How many words is that? A couple of hundred? Does that 15,000  include all the conversations I have in my head? Or is it the spoken part of the act that is important? I also wonder if this is why I’ve taken to writing since becoming ill. Is it an innate urge from my brain to get something out in some form or another? Of course writing is very different to conversing as it’s very one-sided, there isn’t the bouncing around of ideas, new thoughts and ideas sparked unless it’s IM or bantering on Facebook. In a way, I suppose writing is very similar to those conversations we have in our minds, I’m sure you know what I’m talking about, we must all do it, those imaginary colloquies with other people and of course always getting our desired outcome, the practice run before saying something close to our heart to make sure we get out exactly what we want to say, reliving almost forgotten memories or playing out our hopes and desires. Surely I’m not the only one? Or maybe I am and I've just divulged something really embarrassing. Well it wouldn't be the first time and it certainly isn't the most humiliating. 

Therefore is my writing the product of all the conversations I’m no longer having? I think it might well be as I am a bit of a language bunny, always have been, my greatest pleasure as a child was reading, entering wonderful imagined worlds for days and days on end.  Of course there is the little matter of my illness and chatting can be very draining for me, I need a lot of quiet to be able to get through the day and the conversations in my head are calm ones and expend very little energy.  So, what will this do to me in the long run, the fact that I’m not running linguistically as I should? Do we ever forget how to converse, how to interact? Will I only be able to effectively communicate through the written word? Only time will tell and well, if that is the case, hopefully when I finally get well or at least get some proper medical help I might, just might, be able to make it as a writer. 

Composing the Past Once More

Here is the 2nd edition of the poem all thanks to Palou. I feel it flows much better now and the grammatical mistakes have been ironed out. 

Cours, mon petit, cours!

Le vent t'emmènera, en volant tout deviendra clair,

La hauteur te séparera de toi-même.

Ainsi, plus rien ne pourra te nuire.

N'aies pas peur d'être en morceau, 

La légèreté saura te reconstruire.

Reste entortillé dans les nuages, 

La terre nourricière attendra infiniment

Le jour où tu lui rendras sa bonté,

En t'effondrant doucement dans ses bras.

The Offbeat

Life in the slow lane was an odd place for me to be found ever, I was energetically ignited, had some major fire in my belly and a mind full of adventurous wanderings. One day I woke up, was shoved quite rudely into a corner, pinned down and shackled to the wall by M.E. I was given a very finite and closed space within which to move, if I try to venture past I’m quite sharply reminded by my constraints, they inflict pain and severe unrelenting exhaustion. As I’m sure you can imagine it took a little while for me to become accustomed to my new situation, I cried, I screamed, I pleaded, I begged, I tried sweet talking, giving up and imagining my freedom yet nothing worked. Eventually one day I accepted where I was even if I didn’t understand why, it didn’t make my symptoms any better but calmness prevailed and life in the slow lane began for the first time in my life.

I’ve learnt to love this gentle pace, even enjoying the juxtaposition of my place within society, watching my peers have families, get MA’s, PHD’s, their careers burgeoning, deeply ingrained in modern life juggling so many perilously balanced balls. I could quite easily fold into myself and become desperate by my lack of “life.” I’m so grateful that I rarely feel that way, I always enjoy seeing my friends’ happiness, it in turn makes me smile, and I'll take as many smiles as I can get. I travel in your timeframe through your stories. The time in which I traverse now goes at a slow beat in comparison, gentle but still rhythmic. All that I do is accompanied by a rhythm, always has been, but now I meander to a different tempo. It’s a gently lilting cadence and my steps are taken on the offbeat.

There appears to be a lull in proceedings. 

Composing the Past

It's been many years since I wrote in French but this morning I had an urge and here's what came forth. Thankfully my dear friend Flo helped iron out some errors. I've translated it below. 

"Cours mon petit cours,” elle a crié. 

“Le vent t’emmènera, en volant tout deviendra clair,

La hauteur te séparera de toi même. 

Comme ça plus rien ne pourra te nuire.

N’aie pas peur d’être en morceau, 

La légèreté te remettras en entier.

Reste entortillé dans les nuages, 

Si douces ses paroles, n’est-ce pas?

Ta terre nourricière attendra infiniment

Le jour où tu lui rendra sa bonté 

En s'effrondrant doucement dans ses bras.“

“Run my darling run,” she cried.

"The wind will carry you, all will come clear in flight,

The height will separate you from yourself.

Then no more shall you be hurt.

Don’t fret of being in pieces,

The lightness will make you whole, once more.

Stay enveloped in the clouds,

Such sweet nothings, no?

Your earth mother will forever wait

The day you return her kindness

By collapsing gently into her arms.”

Growing Pains

Growth comes in fits and starts and there are a ton of clichés but what I want to consider is why some people are able to grow and mature as a person and some aren’t. I don’t think it’s linked to intelligence but linked more closely to those with a greater capacity for compassion and understanding. You see it from a young age in children, there are those who are capable of great empathy whilst others have no concept. Is it something that is taught or nurtured? I suppose it’s something that could be but there can be stark differences between siblings. We all know of brothers and sisters who are miles apart in the way they view the world. Some people grow with each hardship they face and the empathy they already possess flourishes. Do these people spend a lot of time analysing their behaviour and are therefore more cognisant? Or is it just a natural progression that comes with age and experience for some? I’m no psychologist so I don’t have the answers and unfortunately no longer the intellectual capacity nor mental energy to research it.

On the flip side are those who stagnate and some even seem to become more embedded, less-abled to see another person’s suffering, all they see is their own problems. No one suffers as much as they do, they seem to find it impossible to really take the time to listen and acknowledge what is in front of them. I see this as a lack of honesty perhaps, and it may stem from having difficulty in being honest with themselves. Or maybe it’s their way of getting through life’s hardships, if they deny the surrounding reality they can cocoon themselves from going through what is painful work. Taking that step back from ourselves and looking in from the outside, taking time and stock to look truthfully at our own behaviour and why we react as we do towards others is not only rough going but also frightening, however I believe to grow in any meaningful way it is necessary.

Where do I fit in? I’m certainly somewhere in between and have been at points in my life completely unaware of my behaviour and its affect on others. Looking back I feel ashamed. I do try now to always take that step back and take a long hard look at myself. I know I don’t always win through yet it will be something I strive for until my last breath.  

Ripples in the Sea

The slow click clack echoes around the half-empty room that has seen its fair share of nothingness. A room which is filled to the edges with unfulfilled dreams and aspirations, adorning the bare walls with the graffiti of one’s mind. The long, elegant fingers, the leanest part of the body, stretch and linger on the keys whilst the brain and extremities try to reconnect. There is a time delay, like the wobble of a bike after a few years of absence but it feels the same, the breeze through the hair, the flush of the face, the refound pleasure of the long forgotten. But just as after not having ridden for a while there’s no stamina and it’s quickly apparent that one cannot go on for long, especially one who is tainted by ill health.  One would think it’s been years rather than weeks that I haven’t managed to write but I suppose it amounts to the same thing. My small, sore red eyes are drooping, my fingers and brain slowing so for now I will call time but hope that this is the gentle beginning to a return to words. 

The Velveteen Habit

 

It’s a Velvet kind of day.

 When the lingering cadence,

 Wraps itself round my pale blue eyes,

 And slithers down soothingly,

 Occupying that grandiloquent void,

 In a Velvet kind of way.