Step 1 Numb.

Sitting on the couch tonight, I feel.....I'm not sure what. Empty. Numb.

Standing on an empty beach. A black and white photo purged of detail. An echo of a person. A ghost on the scene. The invisible winds erasing me particle by particle. Until I am but a whisper. It's easier that way.

Remove yourself. Erase yourself. Too raw. Too soon. Not today. Self-protection mode. Until later.

I'd built up today. I had told myself not to get my hopes up. But a part of me did. The part that has been clinging to the edge of the precipice by its fingernails. The part that said this is bearable because I just have to get to there. The dot on the map. Point B. I can deal with the journey from Point A as long as mythical B is reached. When I can step through the wardrobe to a world of magic and wonder, hope and strength. A world without pain and worry. When the journey is made bearable because there is a reward at the end. That part of me may have been small but it was powerful. More powerful than I realised.

I wish I was still on the journey. Uncertain future is better. Than cold hard reality.

I sat in the appointment today and my fear was realised. That fear I had buzzing in the back of my mind for most of this year. That I'd stuffed in a cupboard bound and gagged. Because if spoken it would give it power. And yet today it was spoken and now I have to make sense and get through. My pain for the last year is not gastric but neuralgic. Neuropathy strikes again and I get to have knives in my abdomen. An answer but no solution. And now I have to learn to live with it.

Live with it.

Live with it.

Live with it. 

I may have some hope with some issues that surround. The gastroparesis. The fact I can't crap like a regular person because the nerves in my muscles don't work properly.

"We see it in a lot of people with chronic neurological disorders."

How many times have I heard that this year?



Losing weight?

"We see it in a lot of people with chronic neurological disorders."

Unexplained loss of function in one foot?

"We see it in a lot of people with chronic neurological disorders."

Not being able to work my muscles properly to defecate?

"We see it in a lot of people with chronic neurological disorders."

Excruciating abdominal pain?

"We see it in a lot of people with chronic neurological disorders."



It happens in a lot of people. But we can't be arsed working out why, or finding solutions.

It happens in a lot of people. Like that makes it better.

It happens in a lot of people. So for us it is meh.

It happens in a lot of people. A skewed group of extremes which creates a skewed view of normal.

It happens in a lot of people.



It happens.

Live with it.

We can do this and this. But really it won't change much.

See you before Christmas.

Live with it.

Live with it.

Live with it.

Deflate. Vague out. Retreat. It's palpable. It's visual. Even in the chair I could feel myself drop. The tense anticipation that held me together left and millimetre by millimetre I shrank. Down and into myself. Put up the walls and dissolve the emotions. Don't feel. Not yet. Ignore. Process later. Down the track. When you're stronger. When your armour is thicker. When the defenses are raised. When you are that other person. The one not crushed by dashed hopes and broken dreams. The one that must learn to live with it.

Live with it.

Live with it.

Live with it.

If I say it enough times I'm sure I'll understand.

Michelle

Self Compassion.

Now if only I could work out how to pick a better picture as the still.

Michelle :)

Processing

To  post, or not to post?  That is the question.  It's hard some days to decide what to write about.  How much of yourself do you share?  Are there topics that simply shouldn't be put out there?  I need a Blogging for Dummies, that sets out neatly, the okay and not okay topics.  Not that I'd probably read it.  It would just end up sitting on the table collecting dust and coffee cup stains.  Or end up as another brick in my fall back plan for fame, ie to get onto Hoarders.

I'm pretty much of the school that says sharing stories makes them more bearable.  Blogging as therapy.  I think it works, and it's way cheaper than the regular types.  So often we hide what we think is shameful, or too personal.  I know for myself at times, pushing the 'publish post' button, feels like I'm standing naked in the middle of the crowded room.  Exposing yourself can be a strange melange of pee your pants terrifying and exhilarating.  It can be freeing, as you find others who have shared your experiences and support that comes form unexpected quarters.  And finally those mountains can be seen for the molehills they truly are.  So I'm going to take that plunge once more and hope that if nothing else, it helps me sort through and organise my personal maelstrom of thoughts and emotions.

We all have fears.  Over the last few years I've had new ones crop up.  Ones I never thought I'd have to confront.  I don't usually voice them as, illogically, it feels that to give them voice you give them power and that increases the chance they will become manifest.  Stupid I know.  My practical science background laughs derisively at my foolish illogical side.  But the reality is that voiced or unvoiced they sometimes come true.   Sometimes life is simply completely out of your control and you have to find a way to deal with what comes your way.

As my own health issues have progressed over the past few years a new fear has crept into my mind.  Although Bob is not currently thought of as a genetic disorder, except in very specific forms, it can run in families, as can some of my other health issues, and there is an increased risk of yet other cluster illnesses.  I have spent many a sleepless night worried that some part of my defective genes will be passed onto my children. 

As a mother you have an instinctive drive to protect your children from harm.  Every tear, every disappointment, every hurt, rips out your heart.  Knowing that you may be the cause of that hurt, is more painful than words can describe, and there is no salve.  And that is the path I am now treading.  Over the past year my youngest has been on the doctor roundabout as his young body has started to have problems.  Over the past year I have come to the realization that my broken genes have been passed down to those I hold dearest.

I've had a little pit of fear stewing in my belly.  Every time he has felt nauseous.  Every time he has run to the loo.  Every time he looked pale.  Every time I have seen him limping along.  I have seen a little still from my own teenage movie.  And it has scared me.

Even without a doctors diagnosis I've known for some time that he has developed the same gastric issues I had as a teenager.  The same food intolerances, which are now confirmed by recent tests.  Similarly, I've know that his poor little joints are like my own.  I know the pain he is feeling only to well.  Yet despite all the evidence I have held onto a little glimmer of hope that I was wrong.  That it was indeed "all in my head".  But it was not to be.   And I know that what he (and to a lesser extent my eldest) is experiencing is due to my own faulty DNA.  And the guilt is overwhelming.

I've been good at stuffing those pesky emotions down.  But sitting in the phsyio's office listening to words like "sublaxation" and "bad collagen" has hit me harder than I ever thought possible.  I was totally unprepared.  Those words said out loud about my child, were like a clarion bell.  It was real.  More real than I have allowed myself to believe and it's like I'm now standing under a never ending waterfall of guilt.

I know it's not truly my fault.  As my best friend pointed out (and I am so glad I have her voice of sanity in this matter) it's not like I decided to pass this onto my children.  But it doesn't stop the feelings of guilt, rational or not.  In my good moments I know the truth, but in those other times........ 

A mother's job is to protect her children, and this feels like I have failed on the highest level. I know only too well what it's like to be a teenager with health issues.  What it means physically, socially, and emotionally.  And I think in many ways it makes it better, and conversely, far far worse.  It's a challenge to keep perspective and stop my own baggage from interfering with what I need to do now.  To not transfer my own emotional memories onto his little shoulders.

Last night I strapped his ankles in a vain attempt to keep them in place for his cricket training, knowing full well that it was more placebo than panacea.  I spent the drive back home bawling my eyes out as grief and guilt took turns at beating the crap out of me.

I am in that horrible acute phase, where the the roar of my emotions is deafening.  I have argued irrationally with Mr Grumpy, as my own insecurities and baggage have taken control.  I  have yelled at the dogs and screamed abuse at the washing machine for not washing quickly enough.  Even the discovery of the empty coffee container feels like a deliberate personal attack.  It's my irrational side in all it's glory. 

I want to punch something.  To yell and scream.  Or grab a bottle of tequila and hide under the covers until I can view the world through the same beer goggles that transform the world to hilarity and beauty.  But I'm a mum, and mums don't have that luxury.  We have to hold our shit together.  Stuff down our fears, put on our calm faces and tell them it's going to be alright, even when it's not, even when that little voice inside is screaming in our ear.

There is a creeping fear that this may be indicating the arrival of Bob in his life, but I can't face that just yet.  I'm going to put that one in a box, tie it up in chains, and bury it deep down.  I'm not ready to tread that path.  Though I know that if the time comes, I will.  But until that time I shall say a prayer to every deity known to man that he will not have to take that journey, that I can spare him from at least that burden. 

I know that logically, at the least, I can now find him the help he needs.  I can give him the gift of believing him when he says he is in pain.  I can support him in the multitude of ways that I didn't have as a child, when these disorders were not recognized and the title of hypochondriac was readily bestowed by the medical profession and family alike.  I know the power of a diagnosis.  I am glad that it gives us a starting point from which to tackle these issues.  But none of that changes the fact that I cannot give him the gift of good health.

My own health issues mean nothing in the face of those of my child.  I want to have the magic wand I had when he was little.  Where I could make the monsters disappear with my miraculous mummy super powers.  Where I could kiss his bumps and scratches better.  Where he knew without doubt that I would keep him safe and protect him from the harms of the world. I want to wrap him up in joy and peace, and let him live in a pain-free world. 

So I will take a breath.  I will dry my tears and patch my heart.  I will put on my practical hat.  I will book the appointments.  I will take the steps.  I will don my armor and fight for him.  I will help him find the path to acceptance of his physical limitations.  I will help him discover that his true gifts are not the ability to kick a ball, but lie within his spirit and generous heart.  I will do all in my power to heal and soothe.

And I will try to find that place where I can be okay with all of this.  But at this stage I am still processing.

Michelle

Forget Me Not.

He should be eighteen
But will remain forever nine
The little boy with the laughing eyes
And the mop of curly untameable hair
Caught forever in endless days of childhood

A chance word
A song on the radio
It catches me unaware
Reopening a wound that has never fully healed
My heart screams in pain
And I am hurled once more upon the jagged rocks of memory.

A phonecall in the night
My sister's tears
Her mumbled words
Her grief rends the world
I hold her tight
Yet cannot touch her
Tethered together in a feeble attempt to save her
To save myself
Relentless storm clouds beat down
We are all swallowed whole

Casseroles, bread, an ocean of milk
Why do they think food will salve us?
But they must do something to save themselves
Empty thanks yous
Awkward words
Awkward silence
Faces come and go
They are all strangers
In a strange land
The world is lost
There is nolonger meaning

His tiny body laid out before us
Witness to that which should never be
I should never have looked
That should not be my last memory
I tear at the visions in my mind
Trying to erase the moment
It cannot be undone

Emotions burning me to the core
A thousands suns to sear me soul
I can stand no more
My mind rebels
And I am numb


I am no longer really here
Faceless mannequins sit before me
They fill every corner of the church
And spill out onto the road way
Silent sentinels to my grief
The world is muffled and grey

I can barely feel the wood of the pulpit beneath my hands
Witness to a million words of love and grief
Aged flaking lacquer slices my fingertips
And I feel nothing
I am a voyer
Disembodied and disconnected
The woman standing before me is a stranger
Her ashen and tear stained face belong to another.

Words on paper in my own handwriting
Seem the work of a stranger.
Images flicker in my mind
My sister and I sitting alone
In the lounge room
The door barred to keep the world outside.
Paper and pen cannot hope to capture
What is lost.

Do the words matter?
Or is it the act of writing?
The memories
Laughing, crying, screaming
We hold each other without touching
Each knowing that a single touch to comfort will break the spell.
And we will drown once more
We must hold this moment of sanctuary
Or we will never survive the reality
Beyond the door

My mouth moves
I speak the words
But they have no meaning.
Remember the joy
Remember the love
Hollow, meaningless, lies
I lie to myself, I lie to everyone
Who am I trying to convince?
A piece of me is missing
I fear I will never find it

I swallow my grief
I cannot show it
False strength
A thin veneer to cover the maelstrom that consumes my soul
My skin is sensitised
Each touch meant to comfort
Becomes a thousand razor blades
Slicing my flesh to shreds

Time heals all wounds
Except this one
The fragile scar continually breaks down
A chance word
A song on the radio
And I am transported to that day once more

I cannot breathe
Tears run unchecked
A tide to swallow the world
The waves close over my head
The darkness blankets me
Peace is forever denied

I must swallow myself
Or be lost forever
I take the pain and put it in a box
It struggles to escape
And I tie it tight
Life goes on because it must
But the light of day is forever dulled


If the only way to be rid of the pain is to forget
I choose always to remember 
If you cannot feel love without pain
Then the pain will be borne
And he will be forever loved

Michelle

(This is in memory of my beautiful nephew Jack who was taken to soon.  Nine years is as yesterday)