I want my child to see the beauty of this place. To walk from the mountains, to the sea.

Those words come from the Fat Freddy's Drop song Hope. It came up on my playlist today as I lay in bed, my body up to it's usual shenanigans. My right arm sprained and protesting my latest attempt to exercise. Grievances heard loud and clear as I tried to comb my hair, or lift my coffee. Frustrations abound. Listening to words of hope whilst cursing my body. Listening to words of hope while reading an anonymous email telling me that by speaking of hardship, I have none. I am charged as having given up and without hope, simply because I dared to say sometimes it's hard. Rather than stuffing it down to be more palatable to others. Not the first and not the last. Because there are those who have an overwhelming need to tell you how you're doing it wrong. And the positive that is hope, becomes twisted and used like a sledge-hammer, by those who don't understand that different doesn't instantly mean wrong.



Hope and I have a contentious relationship. At least the shiny plastic version that is shoved down my throat on a regular basis. My nails on a chalkboard.

Saccharine sweet hope. The hope you MUST have. The hope you SHOULD have. Held down, the syrupy hope poured down your throat until you swallow.

Become ill and you are beaten over the head with hope. The hope of others. The hope that must look a certain way. Sound a certain way. The hope that negates reality. The hope that wears blinkers. The hope that feels fake when I touch it. The MUST and the SHOULD that cause me to dig in my heels and baulk at any attempt to force it upon me. 

Every interaction and the Hope Card is pulled out. To suppose I have none. To be tossed in my face at the first sign that my infirmities might be offensive to others. To silence.

A hope forged of perfection. Perfect sickie towing the party line. Deviate at your own risk.

Hope it's a four letter word. At least the faux variety we are sold.

Snake oil wrapped in fancy words and flashing signs. Promises and panaceas. Fools gold. Diluted and reduced to a buzzword. Until it is barely recognizable and becomes unachievable.




Hope floats.

Bobs and weaves amongst crashing waves and the calmest seas.

A living thing. Exhale inhale. I can feel it inside me. Forged on an anvil and with a gentle caress.

The first hint of a cool breeze moving across my skin.. Promising change after a long hot day.

My hope is mine.

Composed of a hope of laughter and hope of love. Of hope for compassion. A hope of reality. A hope of dreams. A hope to endure. A hope for strength.

A hope no longer required if I allow myself to see that so much of what I want and desire already resides within me.

Hope that I will laugh? Or choose laughter?

Hope for joy? Or choose to find it?

Hope for strength? Or finally see that I have had it all along?  

Hope for better days? Or find the beauty in this moment?

Hope that my children learn the lesson? Or teach them myself?

Hope and I dodge and weave. Come together and fly apart. Evolve and change. We sit quietly together and find common ground. It is rough around the edges, a little worn and weary. But we agree it has a place. We mark the lines. And agree to the importance of its presence.

It is quiet.

It is patient.

It is practical and workaday.

And it fits me to a T.

My hope may not look like others' hope,

                                             but it is mine all the same.

Michelle

Missing Time.

(source)

Sometimes the world moves past furiously, while I sit here in one place. Me in my little glass fishbowl of illness. The rest of the world buzzing by with plans and destinations.

I look around me, face pressed against the glass, and people are living. They are going to work, to parties, planning weekend BBQs and trips overseas. They bemoan sporting events and school plays. Not another work do? Two parties on the same night? What to do? They are renovating and undertaking garden makeovers. The Internet is abuzz with posts about planning school holiday trips and Christmas vacations.

(source)

Me?

I'm working out how many specialist appointments I have before Christmas. Working out how I can arrange transport to get my long overdue monthly blood work drawn.

I'm trying to list what meds I need to buy this pay day. How many referral letters and re-prescriptions I need to organise at my next GP appointment.

I'm planning my next trip to see a doctor. Do I have my med to stop vomiting, the one to stop me peeing, the one to stop the trotts, the extra salt and the bottle of water? Do I have my puke bag? The loo paper? Have I taken my pain meds in time? Do I have their number so I can ring and say I am running late because I am stuck in the bathroom of a 7/11 crying at the indignity of having to throw up yet again in foulness of the communal bathroom?

I'm waiting on wheelchairs and working out how to pay for another pair of compression stockings. I'm working out my plan for fire season and how to pack my medicines that need refrigeration. I'm making sure my medical records are in one place, next to my photos and my laptop.

My plans aren't like other plans. Nor are my destinations and goals.

It feels like there are two streams co-existing side-by-side. Never meeting. One looking longingly at the other. The other going on, oblivious to the first. My personal little version of the multi-verse. My alternate reality.

(source)

The days flow by, the weeks, the months. All of a sudden it's almost October and I wonder how I got here. The days merge and time is no longer measured as it once was. All temporal bets are off. Some days fly by. The week gone before I had even realised it began. Some days are excruciatingly long. They drag by, seemingly infinite, tearing at my nerves. I can feel the stress of those long days in the roots of my hair, at the base of my fingernails. I feel it in my viscera. I beg for them to end. And yet...

...to those living in the other stream,

it's just another 24hr period. 

I am set adrift by insomnia, coma sleeps, exhaustion so deep it renders the rest of the world non-existent. I have no boundaries, no schedules, no timelines to imbue my world with direction and structure. I am simply here, floating from hour to hour. Night and day have no meaning when sleep is so elusive and so contrary. I measure time in pain, in fatigue, in nausea, in weakness, and that word my doctors seem so fond of, malaise. I measure time in medication. In when to eat and how much I can drink before a trip. I measure time in the number of trips to the loo to empty my body from one end or the other. I measure time in how many hours till sunrise as I lie looking up at the ceiling in that special darkness that only exists at 3am. I measure how long I have to stand at the chemist counter. How long till I have to cook dinner. I measure time in pieces. Unconnected chunks of time that clash and flow unevenly.

I lose time. I lose a sense of connection to the real world.

I am left behind. Stuck in my glass bowl.

The disorganised time of illness overwhelms and I have to make my escape.

So I go and I sit in my garden. I feel the sun on my face and the earth beneath my feet. I dig them deep. Squishing the loamy earth up between my toes. I breath in the comforting smell of freshly turned soil. I marvel at the tiny creatures that live and work in the darkness. The hint of future life and possibilities that it contains.

I run my hand through the herbs. The mint growing up through the brick work, the rosemary in an old concrete pot I found under a pile of ivy behind the shed, the thyme and the sage. The waft of perfume strong and rich. I cover my face with my hands and inhale the traces of fragrant oils. Let it infuse my being.

I concentrate on the sounds around me. The bees meandering through the upright stalks of the lavender. Legs laden with pollen. Bringing life. Buzzing with the joy of the abundance around them. The tiny skinks lounging on the rocks that create the garden edging. Basking in the sun. Enjoying the warmth no matter the risks of being out in the open. The birds singing of hope from the branches above. Hope for new mates. Hope for new life. Hope.

And I lose time in the embrace of the life that surrounds me.

I open my eyes and find myself a step closer to being whole. I breathe in the energy and life around me. Allow myself to become a part of that world, the cusp of Spring, the cusp of possibility after the cold of Winter. And take a little of the hope for myself.

(The heart of my glass bowl)

My glass bowl may be small. But it is filled with life. An abundance, if I choose to find it. Choose to let myself embrace it. Choose to hope. To dare myself into believing that this new life has worth. And I fill my bowl with light and life. With gardens and beauty. I am happy to lose time in that world. To accept that time runs differently in the bowl. That it isn't a static, defined constant. That, instead, it is a wild creature living to it's own tune. That tune, is my tune. My time.

Maybe my time isn't missing. 

Maybe it's always been there. 

Maybe I just need to see it.

My time is different. 

But my time is perfect.

If I allow it to be.

Michelle :)

Perfect words from Talking Heads.

"And she was looking at herself 

And things were looking like a movie 

She had a pleasant elevation 

She's moving out in all directions.... 

....Joining the world of missing persons (and she was) 

Missing enough to feel alright (and she was)"

Scars.

Today was another day of joy changing my dressings. Dodgy collagen means that two weeks post-surgery my wound still isn't fully sealed. There's one pesky patch that teases me. One day I look at it and think, "Finally. Finally, it is starting to come together." The next day I have a line of open, pink wound. Sitting there. Laughing at me. I'm pretty sure I heard it whisper "sucker", complete with maniacal laugh. Ugh. I know I shouldn't get my hopes up. That I should just be patient. But patience and I aren't good friends. Never have been, and likely never will be. Add in that day-after-day that the adhesives needed to keep my dressings on, and the wound protected, are eating away at my skin and I know that scarring is once again in my future.

Many have asked if I am worried about scarring. 

Am I worried about people being able to see the lump on my chest where Jeri sits? 

The answer is simple. No. 

I have a number of scars on my body. I don't try and hide them. It never occurred to me that I should. I don't see them as a cause for concern. I don't see them as something that I should think of with shame or embarrassment. 

They tell me tales of my life. And speak of gifts big and small. 

The stretch marks on my stomach told me of the gift of two beautiful boys. 

The scar on my right breast told me I would be given the gift of attending way too many school concerts.

The scar on my left breast told me I would have the gift of spending many late nights making birthday cakes.

The scar on my stomach told me that I would be given the gift of seeing my kids grow up.

The scar on my thigh told me that I would have the gift of more years with my husband.

The scar on my ankle told me that I would have the gift of spending more Sunday's having family roasts.

The scar under my left breast told me of the gift that my intuition was right.

This new scar tells me of the gift that I will wake up tomorrow, and the next day, and the next. 

It tells me of the gift that I will be able to sit on my couch and argue about what we'll watch on TV tonight. That I will be able to yell at my kids for not cleaning their rooms. That I will do a bazillion loads of laundry. That the cleaning of many toilet bowls are in my future. That I will be able to argue with my husband over stupid little things. That I will be able to both snuggle with my dogs and yell at them for chewing up yet another remote. That I will be able to embarrass my kids with hugs in public and stories from their childhood. That I will be able to hug them and spend time with them. That I can hold my husbands hand this night and the next and the next.  

This new scar gives me time.

Time that suddenly became more pressing.

It gives me hope. 

Hope I'd lost.

It gives me possibilities. 

Possibilities I'd started to forget.

It is a gift.

A gift I never imagined.

There is no shame or embarrassment associated with with this scar. Or any of the others I wear.

I will celebrate it and yell my joy from the rooftops. This scar is a gift, not a burden. It is beautiful. And I will wear it with my head held high and a smile on my face.  

Michelle :)

Limits

I have a sneaking suspicion I may be one step away from reaching my limit.  I always knew I had one.  I was just cocky enough to believe that mine was a hell of lot bigger than everyone elses.  The Grand Canyon of limits.  But of late it seems more akin to a thimble, than some humongous marvel of the natural world.  Of late the continual blows seem to have reached critical.

I've always been the one who holds it together when everyone else is unravelling.  I've always been realistic and practical.  I have the stifling of emotions down to a fine art.  I don't ask for help.  I don't rely on others.  I don't share my demons.  I sit and hold the hands of others whilst they give free reign to their emotional wildfires.  I pick up the pieces.  I pat the hands.  I make the soothing noises.  I distance myself from reality to give what is needed.  And those that receive my ministrations continue, oblivious that my need is as great as theirs.  A secret I hold tightly to my chest.

But reality is a persistent cow.  All my hard fought battles to be positive and hopeful are being swamped by a relentless tide of dread.  All the negative thoughts I suppress so expertly, are welling up, like fetid water seeping through the rocks beneath my feet.  I feel myself sinking, dissolving, into the murky swirl around my ankles and I don't even know where or how to begin to look for aid.  I sabotage myself, continually refusing permission to even think of succour.

I rally against it.  In vain it would seem.  All those little shadowing voices.  Little bites, ripping at my spirit.  Normally I can beat them back.  But today, today they are goose stepping their way across my being, relentless in their desire to conquer.  I am but the dirt under their boots.  They care not what I feel.  They are as devoid of emotion as insects.  Driven on by an instinctive need to consume.  I fear that today they will take all that I am.  Part of me wonders if submission would bring relief.  Part of me wants to let that seductive darkness surround me.  To lie in it's comforting embrace.  To end the exhaustive war for me.

I want to curl up.  To hide away.  I want to cry out "no more".  The emotions I have long suppressed threaten to rise up and sweep me away.  I fear them as others fear death.  I fear that to let them have voice I will lose the me I have long fought to create.  I fear to unshackle them and reveal the truth.  To expose that the long crafted façade is really a fraud.  A fraud perpetuated not just on others, but also myself. 

My voice cries out "This isn't me.  I am not like this".  But the rising tide of doubt and dark says otherwise.  How do you fight an enemy that comes from within?  Walls can be built but the enemy remains on the other side.  It sits there patient.  Waiting.  It knows it's time will come.  It knows that as hard as I deny it, it still exists.  In my waking nightmares.  It roams the corridors of my mind, seeking escape.  Leaving a trail of wreckage in it's wake.

It has many names; doubt, hopelessness, helplessness, guilt, emptiness.  Once released I know not whether I can ever restrain it again.  To allow it free reign may let forth an endless and destructive torrent.  I fear to lose myself in that moment, swept away forever in the darkness.  To never regain the hard fought illusion of strength.  Today it pounds heavily at the door.  Today the cracks have widened.  Today I fear it may gain admittance. 

I never use the word 'hope'.  It has never been part of my vocabulary.  Hope is a thing for those who cannot bear the harshness of reality.  Hope is bound tightly to it's mate, disappointment.  To allow it entry is to also give admittance to more pain.  Hope is for fools.  But today I find myself envying those who have hope.  Today I want a little piece of that for myself.  Today I want to believe that things could get better.  That my body may finally be healed.  That the wounds to my heart and spirit may someday be less raw.  I don't care if it's delusional.  I only want it for a moment.

Michelle