it is after midnight and i am pacing, in the dark, the white tiles of this godforsaken hotel room, gritty underfoot with spilt sand. i want to howl and sob, but instead i sniffle and struggle for breath, suppressing this rush of emotion, so as not to wake my sleeping family. i cannot take it outside because i am surrounded by buildings, balconies, other hotel rooms.

i am breathless with my aching. i feel i will never recover. and in a way i feel i never want to recover. i can summon no vision of life without her, nor do i want to.

this is a heartache of monumental proportions. a heartache like no other i have ever experienced. those other trifling heartbreaks seem so trivial. when grieving a lost lover i have been able to believe that there would be another. i have had faith that i would again be happy, that i was better off without that other, better off, even, to be alone. there were platitudes for such heartbreak.

rationally, i know that people survive this, and go on to lead lives which are fulfilling and happy. i just can't really feel that with even a modicum of certainty.

i cannot believe that the last four years have happened, or that they are over. i find myself thinking 'my daughter died' and it seems that i am lying, that this is not true. it just seems such a terrible dream. and yet i feel so utterly wounded by all i had to witness.

i recall the grace with which maia bore her illness, her disfigurements, her incremental loss of independence and dignity, and it physically hurts me to remember. i just don't understand the why of it.

i was raised a catholic, with a belief that all is written and my adult studies of esoterica and philosophy ingrained in me a certainty that there are reasons for everything, and that although it all seems random it is not. and there's the rub - surely there are reasons for her suffering; surely this was her soul's purpose, and mine to witness. but for fuck's sake, WHY??

from this distance i think that i do not fear death. death offers to me a possibility of understanding, of seeing from a different perspective, a hope of knowing the whys and wherefores of this shitty and painful human embodiment. and somewhere it is written that i have to just go on, and get over this monumental grief, and keep on living, until it is my time to die.

tonight, pacing, i just can't seem to see how do that.....

Leeches and limitlessness

I feel so unbearably sad
I have tonight returned from being away for five days. I spent this time in another forest, a forest just over the hill actually.
I spent this time walking, and hanging out with my kids, and my bushwalking buddy lee.
I have come home and now I just feel sad.
I keep thinking that I don't know if I will ever be happy in this house again...
When I am here I feel utterly oppressed. I don't see a future. I don't want to see a future. When I am here I am just plain sad, and I don't want to ever feel any other way. I don't want to go on when I am here. To go on seems the height of sacrilege. When I am here I seem to resist forward motion.

Away though, away I feel liberated. I feel the sense of possibility. Away from here I can dream. Away from here I can simply be, without the weight of this future I don't want and can't see and don't want to see.

I don't want to be back at home. I want to be back in that other forest, in a tent, on an uncomfortable mattress, fast asleep by now. I want to wake at 5.30 and spend the day navigating mud and moss and boulders and inclines and declines and leeches and lunch by a creek or huddled from the rain on a mountaintop......

It occurs to me that what I need is something so foreign, so completely different from anything I have ever known. Planning this trip to Spain is absorbing enough, but I want more. I am resentful of the schedule, of the regimentation which insists that I just steal away some small little piece of time. A few months is not enough to get over this and reintegrate. What I want is an undefined time away from here. I want a limitlessness with my children. I do not want to just get on with life. I don't want
to get back to normal. I don't want to put this all behind us. I cannot any more just patch over the trauma and get on with things.

Tonight I am reminded of the pointlessness of it all. I feel so hopeless....

we are disintegrating, you and i

it is impossible to put into words the horror and the brutality of this letting go of life.
the infantilization of one who is one foot in and one foot out is like a revelation to me.
i am shaken by the indignity of watching as each milestone happens in reverse and you are suddenly again a child, trembling and needy.

we are coming full circle and just as i bore you into this world, so i am seeing you out of it.
now, as then, we are in this together, and there is no turning back
there is only one way out of this.....

and so, together, yet separate, we go through it.

your greatest gift to me has been to show me how to be a mother.
we grew up together, you and i and once i had you i was suddenly someone.....someone else....someone's mother....i didn't know how to be this person. and through your presence i slowly, tremulously, learnt. oftentimes i didn't want to see what you were reflecting back to me. every day now you show me something from which i want to flinch away and deny. and i feel my love measured in the staying of my presence. and so each day i am astounded to realize the depth of my love for you.

i see that in leaving you are teaching me something else.....teaching me to be someone else.

i am as afraid as you are....

i feel like mary, mary, quite contrary....

so, it's time to acknowledge that i am working with a profound anti doctor bias.
in truth, as human beings, i have been heartened by my interactions with doctors.  going back to the very beginning of this awful journey, we have encountered:

4 GP's;
5 radiation oncologists;
8 medical oncologists;
4 surgeons;
5 anaesthetists;
2 palliative care specialists
and registrars and interns for all of the above as well as countless emergency doctors and intensivists, and all of those who have blended into one at particularly traumatic times.

of the above from whom my daughter has received regular or ongoing treatment, i am confident to say that the vast majority have displayed a real care and concern for her as a person.

her medical oncologist is a bear of man - a grammar school rugby player type if you can picture that. he has been the most constant provider of care and intervention to my daughter.  we first encountered him about two and a half years ago, and in this time he has come to really know and appreciate my daughter, taking inspiration from her determination and continued achievements.  personally i have felt from him a warmth and compassion, and a genuine openness to discuss different viewpoints.  he encourages me to ask questions, expresses his appreciation of same, and confesses when i sometime confound him with aspects which he may not have considered.  we have seen him on average twice a month, and we have never, not once, been billed.

our GP is a warm and sensitive individual, with a lovely grasp on the nuances of family life, and a genuine care for our welfare, and the needs of my daughter, and myself and my family.  i find him to be totally non judgemental and extremely supportive. he is available and approachable, and i appreciate him for his candour, his willingness to have difficult conversations, and his general groundedness.

the surgeons who have worked on my daughter over the years have been uniformly approachable and compassionate. the (female) surgeon who has performed the most recent surgery dealt beautifully with my mother angst and anxieties.  she gave me whatever time i needed in order to address my myriad concerns and uncertainties and treated me with respect and dignity at a time of great vulnerability. faced with my uncertainty and concern she displayed sensitivity, understanding, and great patience.

as did the most recent anaesthetist, despite the fact that i will probably never see her again and she will probably never encounter my daughter again in her professional life.

so, as individuals, i have found things to like, appreciate and respect in most of the medical doctors who have crossed our paths over the last turbulent four years (there are, of course, multiple exceptions!!!).

.....and yet....

i find that at every twist and turn in the road i am confronted and challenged by their methods, their treatments of choice.  i am like the devil's advocate in this game. it is my role to expose all of the possible risks and side effects of the treatments pursued.  it is mine to voice concern, to raise the red flags, to propose differential diagnoses.......

i am like a thorn in the side of the medical establishment.

i think that's probably a valuable role..... .

however, i am caring for a young woman who has gifted herself over to the medical fraternity.  she has total faith in these men and women, in the establishment. she is always very well informed, but is ultimately compliant, and so, so trusting.

i realised a few years ago that it was not my role to fix her.  i understood that in trying to steer her therapeutic approach i was neglecting my role of mother.  i was trying to be her healer.  i came to understand that my role was to support, nurture and care for her; above all to support her in her choices.

this has been extremely difficult at times.....well, most of the time actually.  i struggle to accept the therapeutic benefit of administration of high doses of toxins, and the further toxins to assist with the effects of the former toxins....i tend to dwell on the realities of such banal sequelae as cardiotoxicity, bone degeneration, pulmonary fibrosis, fistula, nerve damage and pain.....

i guess i'm outing myself as a glass half empty kind of person here - which is a surprise because i don't know if i tend to identify as such generally.  but i tend to inhabit the contradictory space - if a doctor suggests surgery then i can tell you all of the possible consequences of anaesthetic administration as well as the actual surgery, and the issues which are relevant to recovery and ongoing consequences.  if radiotherapy is suggested i will immediately think about the damage to healthy tissue and the possible consequences in the short, medium and long term.  if a drug treatment is proposed then you can bet i am preoccupied by the possible effects on the heart and neural system, not to mention blood vessels and immune system....and don't get me started on survival benefit and quality of life issues.....

it's excruciating, actually......

it's times like these i wonder if i will ever live long enough to be able to see the lessons in all of this.....

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?