The biggest fear

Logging onto this familiar page I see I haven’t written here for over a month. Preferring the ease of instagram, a few words splashed across the web from my phone, no need to get up, turn on the computer, wait for internet or choose images. Its still blogging, just shorter, sharper.  I write everyday in one way or another. Personal pieces, work reviews,  fantasy novels, journals and social-media-captions. Sometimes it’s just so that I don’t get stuck, my red diary pages stuck together with tears and ink blotches, spilled tea and laughter lines. Sometimes it wards of loneliness, sometimes it’s just to connect, to share, to document and recently, to remember. It helps me make sense of my ride and I hope it helps you on yours too.

Writing

Today I want to remember. So I choose to log on, open up, splash some more words across the web and bleed just a bit more publicly. It’s so nearly time for this baby of ours, just a couple more weeks till we’re all on the same side of my womb.  It feels like the calm before the storm, or perhaps I’m now in the eye of it. My body’s erily still, and yet full of life. I move through days that seem to blur and bend, my body stiff and achey, bloated, acidic and sick. Something pushes deep inside and my tummy pokes out of my too-tight-top. My love cups a hand to his ear and presses into my belly “You’ve got two hearts” he says. And I smile at the magic in his words.

Bumpage

The storm’s eye swirls around me, but I feel a strange calm, willing it to pass, dreaming of entering the storm clouds once more and looking for the sun on the otherside. A clarity I’ve never felt seems to float around me and mundane things that once worried me; deadlines, banks, tax, bus passes, all seem irrelevant and petty.

Instead one great big fear rears its monstrous head. A fear so big I haven’t been able to voice it. Name it. Naming things makes them real, makes them true and till now there’s been so much else to distract me. But finally in this new state of calm I see my fear. I see it more clearly than anything I’ve ever seen. And, somewhat strangely, now I see it, I am no longer afraid. Now I see it, I feel only pride.

The fear is this; That after the birth of our beautiful baby, the powers that be will witness me having a Tonic Clonic Seizure. They will witness it and deem me unsafe and unfit to be a mother. They will say that my Epilepsy makes me a risk. And they will take our babe away. And I will be helpless.

That is it. That is the deepest, darkest place that fear of epilepsy takes me to. I am writing this for all the other epileptic mummas out there who perhaps fear this too, for everyone who feels that they have to keep epilepsy a secret. I am writing this because I know that fears feed on darkness and secrecy. Show fear the light and it shrinks down. I am writing this because it is my truth and it is the reality of what living with Epilepsy actually means. In writing about it, talking about it I realise I am no longer so afraid of it. Instead I look at the words and feel pride that I face this fear. I am stronger because of it. People without epilepsy never have to deal with thoughts like this. Epilepsy is grim, it’s grip tight and smothering but by speaking about my experiences I hope that I can find a way to the light behind it and see that I really am strong and I really can endure and our baby will be safe because of that.

Wisdom!

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This too shall pass

It happened again.

It happened again. I bent over to pick my pyjamas of the bed.

and bang pain stabbed me in the back, through my psoas and into my heart,

spun down my leg and flipped up into my chest.

smile

 

Fear jumped up and dug in its talons in,

not again, not again, not again……..

It seems that this is ‘the thing’ with TMS,

with a ‘Chronic’ condition.

Even when you think it’s gone, even when it’s not-really-there, even when perhaps, you’ve somehow forgotten it.

It’s there, just biding it’s time, waiting, lulling you into that false-sense of security, so you start to believe ‘hey! maybe I have this!’

Maybe it’s ‘GONE!’ Maybe, oh maybe, I’ll skip that exercise, I’ll eat that and I won’t do that – that thing, Maybe I’ll stop the therapy, yeah good plan. I’ll stop.

So you stop (I stopped) and then just at that moment when you think ‘YO BITCH I’m BACK!’ (or some other tv-series-cliche) then the pain jumps up, well rested, ready to get you and BREAK-your-BAD all over again.

my life

That is how it was last night and today I am shattered. I dreamt of ripped limbs and stabbed-out eyes, of evil deeds and hate-filled words. I dreamt my body was not mine and of endless rounds of seizures. I dreamt of drug boxes so big I climbed inside and couldn’t get out. I dreamt that it was over and I almost hoped it was.

Today the screen blurs through my sea of medication, my face aches with the sobs that streamed down it. Naked, I cowered at the bedside, trying to dress myself, frozen to the spot. I cried enough to water the sahara and then some more too. Now my head pounds. Seven words penetrate the fug of pain and frustration which settles around me. ‘You are not alone. I love you.’ and slowly, I look up. There  is truth there. I know it and I am grateful.

Lao Tzu

The difference between now and ‘then’ is that now I know that I actually CAN do this. I have done it before. Now I know the reason my pain errupts. Now I understand. I’m learning to predict it, to read my crafty mind, to learns its tricks and find it’s hiding places on the banks-where-the-wild-thyme-grows, to seek it out, face those demons that make me cry and chase them out. Let them go. Stop giving them shelter, feeding them until they’re strong enough to stab me. I’m learning, I know more than I did.

Now, though perhaps more thatn anything I’ve read and seen and heard, I’ve learnt that it really is true. All things do pass. Even pain. Especially pain. Passing does not mean going, but rather moving on, changing and developing. In that somewhere, in this jumble of words spewed onto my blog  today is where I see a bit of light. #chooselove

this too

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On Anxiety

Hard to start writing today……………….at least here….in this ‘real-writing’ place. Another label looms. Another word.

 

I know you. We’ve met before.

You are the space between the words, you are the unsent emails, texts and letters

You jump into my eyes and through my nose, clawing your way down my throat and over my heart.

You leap out of love filled messages, invitations, inclusions, p.l.a.n.s,

You are in email threads full of happiness and excitement

You stalk through crowded rooms and slap me in the face, so hard my nose bleeds

You stroke my hair as I sit on this sofa now. You whisper; Alone. Safe. Alone. Safe…… Alone is safe.

You make me sick. You sink  my feet into concrete shoes and pour boiling oil down my spine.

You prickle the back of my eyes till they water. You spin ice cubes in a glass. You twirl my hair and play with a silent phone just to ‘look-busy’.

You keep me in the same place. You suffocate me and spin me out till all I see is black.

Image credit: Beethy on DeviantArt

Image credit: Beethy on DeviantArt

You whisper that you are my friend, that I deserve this, that it’s better, that there’s no point that I’m not-one-of-them,

you’re wrong you’re wrong I am I know I am……….aren’t I…..where have I gone?

You snake an arm around my shoulders and the world zones out, hard lines blurr and I can’t hear what you’re saying

Frustration and Anger pale into insignificance compared to the rage I feel when I see you.

I’ve beaten you before, so I don’t know why you’re back now.

Image credit: Hito76 on Deviant Art

Image credit: Hito76 on Deviant Art

I know you’re just anxiety. I know you’re  just fear of fear. But still you are here. I know it. So why don’t you leave me alone?

You’re in every invite, every party, every event. Not in my house, not with my family. You’re slimy claws haven’t scraped in there just yet.

But everywhere else, on the bus, in a shop, at meals and friends houses you churn up my stomach and make my heart ache.

I know I’ve lost you before. I can loose you again. I can and I am.

Exposing you is a start.

Today I’ll hold on to that and let go of you.

“Compassion is not a relationship between the healer and the wounded. It's a relationship between equals. Only when we know our own darkness well can we be present with the darkness of others. Compassion becomes real when we recognize our shared humanity.”  ~Pema Chödrön, from her book, "The Places That Scare You: A Guide to Fearlessness in Difficult Times."

“Compassion is not a relationship between the healer and the wounded. It’s a relationship between equals. Only when we know our own darkness well can we be present with the darkness of others. Compassion becomes real when we recognize our shared humanity.”
~Pema Chödrön, from her book, “The Places That Scare You: A Guide to Fearlessness in Difficult Times.”

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Healing Hurdles

The waves crash and hiss, crunching pebbles that here never seem to turn to sand, tumbling stones sucked from under my feet, my boots sucked down and released with a squelch. I look out over the swelling horizon, trying to sync my breath with the crash and hiss, watching my belly rise with the waves. On and on, crash, hisss, crash, hisss, an endless dance of water and earth a game that I am temporarily part of, my boots a battle-ground, first taken by water and then by the earth.

waves

I am procrastinating, seeking the healing power of the elements, distracting myself with the tide. Imagining all the creatures also listening to that crash and hisss, the elephants on far off shores, whales sounding in the deep, men on ships, on beaches and in the air, all listening with me; crash, hisss, crash, hisss, crash…….I am avoiding my truth, perhaps my final hurdle on this journey and it’s a big one.

sea

I’ve been thinking about it for over a week now. I’ve got more pain than I’ve had for months, it’s lasted all week. It’s got worse. A constant stabbing in my side, burning down my leg. My whole body is bruised, stuck, my joints all screeching their frustration with me. I’ve resisted the stronger drugs, choosing to slow down and listen instead.

me

This nawing, nagging nugget of truth I want to speak of but am ashamed, embarrassed and fearful of…the fact is, I hardly dare whisper it…I am nearly WELL…and this single fact terrifies me. It is infact terrifying me so much that it has/is making me sick again and giving me pain…

There is not a single part of me that wants to keep this pain in my life. However, for a year now, it has, despite my best efforts, defined alot of my life. It has changed my life. Loosing it open the door to the question of ‘What if…’ What if I am well? What if I go back to fulltime work? What if I can’t get a job? What if I got a job and then experience more discrimination? What if I get sick again? What if next time I can’t heal? What if next time my relationships don’t survive it? What if next time I don’t survive it?! What and  if………..the two most terrifying words for me today and the fact is, that if pain remains, then I don’t have to face the What or the If.

Since this thought has occured to me it’s as though my body has been saying shhh it’s OK, see you still have LOTS of pain, you’re not well…it’s OK, no need to think What and If… well, I don’t want to listen to that body anymore. My beloved Godfather, a wise-fellow, once told me that anything worth doing is scary. If it doesn’t scare you then it’s probably not worth it. Well this is terrifying me, I am shaking as I type. Perhaps because achieving holistic health & wellness, in body AND mind is THE MOST IMPORTANT THING THERE IS and therefore it’s scary as hell!

alive

Today I choose to accept this fact. I choose honesty. I choose positivity. I choose to know TMS does not own me. I choose life and I choose love. I choose love. I choose love. Do you hear me body?! I CHOOSE LIFE AND LOVE.

pinterest

 

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