i don't know who i am without you.

when i look back over this blog, this chronicle of my recent past, i see that i have placed great value upon the ability to find the gems glittering in amidst the shit; on finding blessings, and reasons for gratitude in my everyday life.

it is a sad truth that at this moment, i feel that i am so deeply embedded in this shit, right up to and past my eyeballs, so that i have lost the very capacity for sight. and all that i am left with is the feeling.

if i stop and feel into my body right now, what i feel is this:

my back aches incessantly, and sometimes flares into acute spasms of intense pain;
my ears are bothering me - there is a tinny quality to my hearing, and right inside my ear canals itches insanely;
my belly feels uncomfortable and restricted by my clothing;
my skin feels dry and dirty, itching and pimpling indiscriminately;
i am experiencing moments of palpitation of my heart.

when i feel into my being, i experience an overwhelming sense of despair; a distinct absence of hope or faith or belief in anything. tears are ever present - tears borne of exhaustion, and a loss of the capacity for coping.  i find myself completely at a loss, faced with piles of litter and precious things strewn about the house as quickly as i can clear them away; with the endless supply of dirty clothes requiring laundering amidst a context of mid winter in the rain; with relentless bills bleeding me of money and head space; with children requiring parenting; with wet kindling and muddy boots.....

increasingly i am finding myself facing a wall and i cannot see a way forward into the next moment. sometimes i cannot even see the possibility of a next moment.

i am feeling bereft of a future. i know this probably sounds very melodramatic, and people get through difficult experiences all the time and move on from them, people LIVE THROUGH stuff.....somehow....but i just cannot visualise anything other than this, anything after this.

let's be blunt....i don't know how it will look for me to LIVE without my daughter. what will my life be without her in it?? i mean, really, how will it look? how will i be????

this girl has been with me since i was a mere girl myself. i fell pregnant with her when i was twenty years old, and that was twenty years ago. every single day of the last twenty years of my life has included her in it. my entire adult life has been bound up in her.

i don't know who i am without her.

i don't want to know who i am without her.

i don't want to be without her.

i'm living on a different planet to you

so i turn on the computer and open my emails, with a clear intention of corresponding with a dear and true friend. before i have even hit compose my intention has crumbled. i don't know what to say. i imagine this loved one, her trials and her triumphs. i picture her sitting by her fire, reading my words, and i suddenly find that i cannot write them. i need to fill her in on what's been happening in my world, only i don't want to. i don't want to burden her. my reality casts such a long and dense shadow, and i have no wish for it to be cast over those that i love.

my world at present is populated with a changing cast of nurses, doctors and wardsmen;  my language is peppered with pharmaceutical slang; my concerns are around side effects, risks and dangers; my vision filled with subcutaneous injections, venal infusions, reports and medical imaging.

at present i am living life either in a hospital room, in a car, or in brief, stolen moments of heightened domestic productivity when the opportunity arises. it's all as boring in the telling as it is absorbing in the living of it. and it's so hard to be living through that i actually really don't want to have keep reliving it in the telling.

so, the challenge is: how to remain connected to the world outside my head, if i am unable or unwilling to communicate with those who populate that world?

a long, slow goodbye

standing at the cemetery as night is falling. light is leaving the sky, in it's wake a blush of pink and orange. a brilliant star appears in the sky. in my car i have found a cd we both used to love, and which i haven't listened to since that time. i play it through the car stereo. i roll a joint, and i contemplate the gravestone as i smoke it, in memory of you.

the music reminds me of my deep love, and my dearest dream, and i once again hold you near, swaying with you in the fading light, contemplating the wonder and the limitlessness of the soul's journey.

the tears roll in a salty trail down my cheeks. they run freely and it is not a wrench to cry so. these tears i let go. i don't fight them, they come with ease. the way is open.

this is such a feeling i am feeling. i am simultaneously feeling the joy and the wonder and the depth of our dreaming, as i am feeling us moving apart. i am filled with gratitude for our union, our communion, as i grieve the passing of time which takes us away.

i am no longer grieving for our unfulfilled potential.  tonight, in this glorious moment, i am filled with gratitude for this big, big love. and it is strangely gratitude which opens the way for me to let go.

tonight, i want to make room. i want to clear some space for another big, big love.  i need to let this other one go.

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thinking about my children on this day, i understand the myriad natures of love.  my lost love is so very different in nature to their lost love. and so our grieving is different. our acceptance is different. our lesson and our perspective are different. while i can open myself to a new lover, they will never find a new daddy. your sister will never find a new brother. you will always be irreplaceable to them.

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standing in the cemetery as the twilight descends, i take the scissors from my car and get down to some pruning. cutting away the ornamental grass plantings which have grown rampant, swamping the red suva frangipini which we planted over your ashes. i clear a little space away, open up your resting place to the sunlight, the moonlight. and doing so i create a little more space inside my heart. i'm recognising that this process is a long and slow goodbye, in which every step away brings me a little closer to you.

emptiness is like a stranger i'm beginning to know

in a sea of old, sick and dying people, my daughter has had the special honour of being the youngest, the healthiest looking and most resilient that i have seen in our journeys through chemo and radiotherapy. this is perhaps because she was not blighted with one of the usual childhood cancers, and that she was 16 when diagnosed, and was therefore always treated within the adult system.

for the last five months or so we have travelled weekly to lismore for her chemo session, greeted by smiling faces, inane chatter, and various visits from the hospital staff.  as a self protective measure we have both always approached this session with an upbeat attitude.  we talk and laugh and i prepare vegemite and butter saos and cups of tea for her in the patient kitchen.  she browses on her ipad, occasionally sharing shocking or ridiculous news stories or you tube videos, and i read a book or the newspaper, or sometimes commandeer the ipad to play a game.

we have good rapport with most of the staff, and a couple in particular, who always stop by and say hello and swap stories of kids starting high school or new christmas rabbits.

we have recently encountered a new face on the chemo ward.  with the arrival of this interloper my daughter is no longer the youngest face on that ward.  this new patient is whisked in in a wheelchair, through the public ward and into a private room, so we are foiled in our vouyerism, and so we wonder about this new young lady, who seems so sad.

in the last couple of days i have learned more information than i wanted to about this young woman, and this knowledge now sits heavy in my heart, my already broken heart, and i can never unknow this new pain.

this young woman passed away last week, aged 16, from osteosarcoma.  she was first diagnosed in may of last year.  in an eight month period she went from being the healthy, happy and engaged eldest child and big sister of a tight knit family, through various surgeries and removal of limbs, several chemotherapies, and who knows what else, until she finally breathed her last 8 days ago.

to me this knowledge is unbearable.  guessing at the grief of this family i have never met, feeling the unfathomable shock of this ride.....i am crying buckets of tears......

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this morning my youngest (8 years old) visited her psychologist and disclosed that she feels she is the only one who grieves the loss of her dad. she thinks the rest of us are not sad, and she feels alone in her sadness.

i don't know how to display my sadness around her, because my own sadness is limitless.  these tears of mine belong to such myriad losses and griefs.  these tears of mine are difficult enough for myself to bear, how can i share them with my little girl?  these tears can only come in the very brief moments in which i am alone, such is their forceful nature. i feel sure they would consume anyone who came near.....

there are days when my load seems too much for me to bear.  times when the responsibility of steering this little ship of a family is too great. times when my despair is all consuming, and still i arise each morning - whether or not i have slept well or deeply - and i make the breakfasts, and i make the lunches, and i corral the children into their school clothes, bags on their backs and off to school.  and while they are gone i clean the dishes, wash their clothes, take their sister to one of a million appointments, prepare her food and coax her to eat it, sit beside her through her long and lonely days of nothingness.....and then i pick the kids up, participate in their chatter, prepare their dinner, tidy up from their dinner, get them showered and into bed......and i am completely empty....

....this too shall pass; this too shall pass; this to shall pass...

when i first started this blog, i was aware of a condition in my life in which i felt completely and utterly unable to share and open up to those close to me about my fears, weaknesses and vulnerabilities, whilst at the same time recognising the imperative in doing just that....at this time i was experiencing a deep anguish, a fetid wound on my soul, and i knew i needed to air it, subject it to light, stop hiding it away in the murky depths which allowed it to fester...i have a sense that at times people were reading my words, and there were times when i definitely contributed to this site as a way of communicating with people, knowing they were directly getting the information.  many other times i used this forum as a way of just getting the words out of me, away from me....much like a painter paints, i guess....

at the time of this blog's conception, i had become so adept at deflecting questions such as 'how are you going?' etc, that there came a time when i felt i had lost the ability to answer honestly, altogether...and hence this blog was born : a place outside of my own mind, separate from my soul and my internal space; a place to commit the fear, the weakness and vulnerability, and to some extent excise it from myself...

and lo, here i find myself again! perhaps two years after first inhabiting this particular dark and treacherous place, i find i recognise this place. i remember what it feels like to stammer through an insightless and shallow conversation with a true and trusted and genuinely concerned friend; to slink away or avoid social events where i might come across people who actually care about my well being; to use my children as a shield which deflects attention away from myself....

do you know, i think i may have forgotten who i am....i really can't tell you anymore, what makes me, ME. i feel i have become unifaceted....i have lost my depth.....

i have lost my depth.....to the depths....what a notion....


i am feeling unmoored, untethered......unhinged perhaps....

i commit here a verbal illustration of descent.....into madness, maybe....fact is that i don't know where i'm descending TO....just aware that this is a downward trajectory....i don't even wish for a parachute...


my eyes are dams - holding back a rising tide of water which i feel too tired, too exhausted to even shed...it all seems so pointless. what is the point of crying, in this situation? and to anyone who worries that this place is called 'suicidal' - don't worry, really, even that seems pointless and i am so lacking in will right now that i am totally safe from self harm/liberation....


it is unavoidable, i think, that i have been, am being, changed by life's circumstances....this is a process of transition, and it is a painful birth indeed...it is happening in the dark. i cannot see who or what i am becoming, where i am going, or even appreciate what anything looks like outside of this place....even my mantra eludes me.....this too shall pass; this too shall pass; this too shall pass......

there's definitely a mania manifest in my domestic sphere tonight. all day in fact. today i dusted, cobwebbed, scrubbed, swept, washed, sorted and moved things about for the entire day. and all the while my youngest kept herself busy all day, with sewing (which ended in tears), guitar playing (which ended in violence), washing the car (which she stuck with to the very end), making a banana and blueberry smoothie (yum!), time spent attempting to train the guinea pigs (not much success), a walk to the neighbours' with cake, reading three chapters of the muddle headed wombat...all manner of things she attempted today. her mood swung wildly between energetic, inspired and creative and tears, frustration, anger and violence. she took a long while to relax tonight for sleeping, her mind racing and keeping her awake.

i recognise her restlessness right now. i feel it too tonight.

and my other beautiful, middle girl has been ill for a week, and she has overnight become bony. she has barely eaten over this time. she has been weak, and hurting and requiring of constant attention to administer medicines, encourage to eat, and drink, and extricate from scraps with her sister....and pick up after!

...and somehow i must wrangle it all in to shape, in order to leave again on monday morning for an indeterminate amount of time....

drinking red wine alone...is this problematic?
it's my first day in my own home in nearly a week. i haven't seen my own children in five days. this week i found myself catapulted, yet again, into a hell not of my own making....sitting in impotence as my daughter battles intense and intolerable pain. bearing witness to her agony. there is something very wrong when i have nothing to offer her; when my only role is to bear witness to her suffering....
is it weak, i wonder, to have the thought that, in the same situation, i would opt out? seriously, i would kill myself; i would take all of my pain meds at once and just end it....i'm questioning quality of life in a very serious way....
this is a very fucked and misunderstood universe indeed...i cannot conceive of the rhyme or reason behind this, and at this moment i have a total and bewildering lack of faith...perhaps it is just drunkeness, but i just don't understand...i can't see the lesson here....i cannot even believe that there is a lesson in this...it is just plain wrong that suffering such as this exists in the world.  we think we are so advanced, so savvy but the reality is that good people suffer unimaginably....