Being Unborn

Being born hurts. Giving birth hurts. Living hurts. So it's hardly surprising that being unborn usually hurts, too.

In our society, we don't discuss death, or dying. It's taboo to talk about funerals, especially how you want your own to be. Accidental death is tragic, death from sickness is sad, death by suicide unmentionable.

My mother was diagnosed with bowel cancer in early 1995. In May that year she had surgery to remove the cancer and a colostomy, followed 4 months later by radiation therapy at Waikato Hospital. She was very miserable, all alone in the hostel, Monday to Friday. The only good thing about it all was the trip to get her on a Friday afternoon. It was so neat to see her and talk to her and know I was taking her in the right direction - home. Her treatment was reasonably unevenful, except for the terrible nausea she felt, and the bad burn she received when the radiographer didn't line her up properly in the machine and fried her colostomy bag on to her.

In early January of 1996, my daughter turned 5, and my (now ex) husband was diagnosed with Hodgkins Lymphoma. Late January, he started his chemotherapy. In March that year my mother was diagnosed with secondary liver cancer, her bowel cancer had metastasised and she was terminal. So I nursed them both, the one with a good chance to live, and the one who had no chance at all.

The palliative care of a loved one is a bittersweet thing to live through. It is also very, very painful.

I spent a lot of time with my Mum in her last weeks. At first, she was still a bit mobile and we would go out and about. She just liked to look at things occasionally. Then she wasn't mobile any more, so we spent a lot of time talking, and she was able to spend a lot of time with Adam, whom she loved dearly. He used to go and sit on the bed beside her and chatter with her, little bits of nonsense. She read books with Heather, things like "Now We Are Six" by A.A Milne, because she wouldn't be there when Heather was 6 to do it properly. Heather adored her.

As the cancer took her and her skin turned to yellow, her morphine doses went up pretty frequently. The time she spent out of bed shrank to a few minutes each day. We did have an outing together one day though. I took her to a clairvoyant, something she had always wanted to do and never had the courage. There was nothing the woman could tell her about her future, it was obvious just looking at her all her future had been used up. But what she did do was help her prepare for the journey coming in just a few short days. I don't really care whether anyone believes or not that there is an afterlife. This woman gave Mum the last pieces she needed to let go. She gave her the hope that something better was coming.

She didn't go out again. She didn't get out of bed a lot. The nurses came 2, then 3, then 4 times a day to monitor her and up her morphine. Soon, she was living inside the morphine, and we had drifted a long way away. She could still hear us and talk to us, but she was weak and tired and wanted to sleep. She used to talk about people standing around in her room, just standing and watching and she asked me who they were. She talked about a little blonde-haired boy who had just been at the foot of her bed. I said it was Adam who had just gone out, but she got a bit pissy and said "don't be silly, I know what Adam looks like, it's not him". She never mentioned the little boy again.

The night before she died, I was sitting with her and she was talking about the lights flickering like sparkles around the room. I said I thought that it was everyone waiting for her to go. The night she died was a Saturday, and even though we were supposed to go to a birthday party, I decided I was going to sit with Mum instead. David didn't complain too much, just dropped me off at Mum's when he picked his mother up to babysit. I said he should come and get me at 9pm. I sat with her, holding her hand and stroking it for a couple of hours. She wasn't really concious, just mumbled about the lights a few times and finally drifted out of conciousness. I sat and I cried and I stroked her hand and told her to let go, just let go and go with them. For two hours I pleaded with her to go. and wondering all the time how I could be doing that. At 8pm, her breathing changed and became slow and shallow. I called my father to take my place, and I left them alone together. Twenty minutes later, I went back in and he said she was sleeping and her pulse was strong. But I could feel in the room that she was gone. All her visitors were gone, too. As I touched her he realised that all we held was her overcoat, the rest of her, the good bits of had slipped away. It was 67 years since she had slipped into that coat and she had suffered rheumatoid arthritis for 35 of them. But it was the cancer that got her.

And I felt very privileged to have been there when she was being unborn.

Having MS is a bit like dying. The disease is tragic, the misery it causes is sad, the desire to die is unmentionable. This one is a living death, too.

I want my Mum.

~~We are not human-beings having a spiritual experience,
but we are spiritual-beings having a human experience~~

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Bad day

I had a bad day today. Lots worse than usual.

My good days lately are still someone else's bad and it gets hard for me to differentiate between them. If I'm walking and talking and not crying, it's probably a good day. Take away any of those 3 things and it's not.

Today was not a good one.

It was the culmination of a week of issues rearing their ugly heads. Things like limitations and disappointments and responsibilities. A week of querying the fairness and justice of what is happening to me, of feeling resignation slap me hard in the face in return.

I am sick.

I've had reinforced to me this week the reality of not getting what I want, of not being allowed what I want. It doesn't help knowing that what I want would not be good for me, would wound me to the core. The Heart doesn't care about minor details like that. I've had it reinforced that my brain isn't working the way it used to. It's been shutting down a bit, lately. And the gut feeling that this is not going to change in a hurry was hammered home in words of one syllable, in a way even I could not disregard. You are screwed.

Sometimes, always being right is vastly over-rated.

So, right from the word GO this morning, my day was heading downhill. I think it was waking up that did it. I should know better. I felt sick, my head hurt and I had pain behind my good eye. So I went back to bed. And I slept until the phone and a friend woke me. Then I slept again until the cleaner woke me. Then I slept again until Adam got home from school. Then I slept after the kids had dinner. And now I've had all my little sleeps, I'm all ready for my big one and yawning my head off. I think I must be sick.

I know what I am sick of. I am sick of my legs crumbling under me. I'm sick of them hurting because I dared to walk 20 feet. I'm sick of my leg burning because I even thought about moving it. I'm sick of freaking out with every twinge behind my left eye in case it means optic neuritis is returning. ON pain is even worse than the burning. I'm sick of looking more hideous than usual now nothing on me heals any more.

Maybe I'm just sick of all the compromise.

~~ If you limit your choices only to what seems possible or reasonable, you disconnect yourself from what you truly want, and all that is left is a compromise ~~

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Accumulating Acumen

I am an accumulator. I collect all sorts of things.

I don't collect things of value in a traditional sense. Most of mine have some deeper meaning, usually one that might only exist within me, only for me. Letters, photos, poems, books, magazines, things that were my Mum's, my Nana's, Great Nana's, things people gave me, things I gave them and for some reason got back. I have cards I wrote to my Nana when I was 5, and a picture I drew her. I have locks of my own hair from 18 months old. I have my mothers long, long plaits put away in a box. I have jewellery and gloves and fabric and my mother's wedding dress. Some of it is worth $$$ but nothing could ever replace the emotional tie I feel to these things. They are my ribs, they cradle my heart inside them. They are my very own History.

I've collected pain and laughter, fear and success, failed myself and saved others. I've amassed friends and a few enemies, gained knowledge and cynicism, exercised skill and poor judgement. I've just been an ordinary person. I can't help but wonder what the kids will take from my things to add to the collection, what they will take forward of me to pass on again one day. What will hold fascination, or good memories (or bad ones, for that matter), or have some special deep down meaning just for them that will make them want to keep something of mine and add another generation to the collection.

My daughter was 5 when my mother died. One day, soon afterwards, she picked up a stone with a thumb shaped depression in it, a reddish coloured stone. She gave it to my father and said it was a "rubbing stone" for remembering. She said he could rub his thumb over it and think of Nanny. Sometimes kids just cut right through the crap, don't they? The value isn't in the object, it's in what it represents.

I am an opinionated cow, I have collected a few ideas of my own along the way. They aren't always very "orthodox". And I've collected a few special friends who don't necessarily agree with my views. But that's ok, cos I know they will see I am right, one day :-)

I've collected a bit of nous in my almost 40 years, tempered with wit, sarcasm, deviousness, manipulativeness, laziness, bitterness, drunkeness, lewdness and not a little bluntness. Anyone who has talked to me for 2 minutes will understand the bluntness bit. But the over-riding intent has been justice and humour and a little bit of acumen.

It makes the injustice of MS less than funny.

I have a depression problem. I dont know how much of the depression is from feeling so ill from the chemo, how much is a physical side effects of the MS lesions, how much is a reaction to the weakness and debility the MS causes and how much is raging against the unfairness of it and trying to figure out "why" in my head. Its not just about pain and burning, fatigue and useless memory and loss of vision, it goes way deeper than any one thing, you know? If you cut off an arm or a leg or lose an eye, life can still go on pretty much as normal. As long as everything else is functioning, life can still be reasonably ok, but the more you take away, the bigger the hole that is left behind. And Im getting more holes in me than a piece of swiss cheese.

Sometimes it's only the holes holding hands that's keeping me together.

Maybe one of the hardest things to accept about this disease is that, frequently, I look ok. If I had a limb missing, or lost all my hair from chemo or whatever, I would be easily identifiable as "ill". But I dont look ill a lot of the time, and even I have trouble understanding how sick I am sometimes. If its looks like a duck and walks like a duck and quacks like a duck, its probably a duck. But its not a duck, its MS and it disguises itself to look like everyone else, if not act like everyone else. I feel like a hypochondriac. I dont have time to be sick. I have a family I am solely responsible for. I am a lazy cow who lies around and sleeps and uses her condition as an excuse for not motivating herself into making things happen, wash her hair or vacuum the floor.

For someone so damned smart, I'm really rather stoopid.

I read something a while back that really struck a chord in me. It was about hearts. It went something like, you never mend a broken heart, but thats ok because you have lots of hearts to give away. This would seem to me to mean some would go to lovers, some to friends, some to family and some to humanity. Things, people, situations will break your heart but the shards will be a memento of what has gone and another heart will step up to take its place. That you will break hearts as you go as well, when endings occur and their owners will store their own mementoes, too.

I hope people remember me with laughter, not tears. I want my funeral to be a celebration, not a miseryfest. After all, it will be the day I get out of jail after serving my time for a crime I didn't commit.

Well, not in this life, anyway. I was too busy collecting memories to take with me.

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What'll they say about me
When I am gone
Was my stay here too short,
Did I lurk far too long

Was I graceful and charming
Was I wicked and fun
Did I dance in the rain
Did I run in the sun?

Did I help and not hinder
Was I generous and kind
Was I quirky and wacky
Or just plain out of my mind?

Was I honest and open
Did I treat people fair
Did it matter at all if
There was gray in my hair?

Did I love those around me
Was I mean and unkind
Did I seek to gain knowledge
And some tangles unbind?

Did I share what I had
Did advantage I take
Did I bury myself
Or a new Alison make?

They can say all these things
They're all true, to be sure
And I'll be listening and giggling
Behind the half open door.

~~ Depression is merely anger without enthusiasm ~~

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Onions

You know you are losing the plot when it's 1 in the morning and you are writing about onions. Unless, of course, you are me. For me, this is perfectly normal behaviour.

Have you ever noticed how things are cyclic, run in circles? No, not just conversations with me, lots of things go around and around. The clock, the seasons, birth and death, our planet, our solar system... etc, etc, ad infinitum, ad nauseum. I think you got the picture; no beginning and no end.

When you cut a limb from a tree, inside are rings that trace it's trials, it's growth and it's history. They each tell a story, encapsulate a snapshot of Time inside a little tiny mark inside the wood. You can see forest fires and harsh weather, pollution and damage, all wrapped around last year's growth. Like a pearl, built slowly, layer upon layer to enshroud a little grain of sand, one small germ of irritation that eventually becomes a thing of beauty. Or an onion. An onion begins life as a miniscule pod that grows by overlaying itself with new layers of flesh, stretching and swelling and growing in a pre-determined pattern to fashion an onion. Layer upon layer.

And sometimes we talk of peeling off layers of ourselves as we grow, like you would an onion, finding what is at the heart of who and what we are. Of course, it could be bollocks. What if that's not it at all? Cos, I have my doubts. I think maybe that's back to front. Maybe we don't peel away a layer to expose what is underneath, but instead add a layer of understanding to what we already have, building on top of our success and our failure, taking the Lesson and making it real, creating a solid base for the next layer.

I'm finding this layer a bit difficult, truth be known. It's a bit like that Jenga game that was all the rage a few years ago, you know the one where you start with a tower of blocks and remove them one by one and try not to demolish the tower and the one who does is the loser.

I am the tower. And someone keeps pulling my blocks out. My foundation pieces, even. Eyes, intellect, arms, legs, self esteem, sexuality, value and ability to contribute. And every time another piece falls by the wayside, I rock and sway just a little bit more.

The Gods play Jenga on a really big scale. They don't do things by halves.

I am going to be one hell of an onion when they finally harvest me, if there is anything worth harvesting that is. Right now, I don't see it.


the pretty flower
brightens up
the lives of all
who share her cup
as in her beauty
they may freely sup
in her bountiful delight

the mighty oak
her shadow throws
to protect as the
pretty flowers grow
in who's safe embrace
storms they'll never know
while she bows before the fight

the pretty flower
begins to fade
as her final bed
is being made
yet the mighty oak
still provides her shade
her branches taller in the light

the mighty oak
now her trunk is bare
from years of use
all worn off from care
and the true love she
never got to share
has faded out of sight


~~ Do not fear death so much, but rather the inadequate life ~~

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Rips and Tears

Aren't tears a bloody waste of time? I mean, what do they actually accomplish?

"Weeping is a normal function, a natural response to many situations and experiences, and does not necessarily mean that anything is wrong with a person. It has been known for many years that all of our emotions are caused by the ductless glands - glands in various parts of the body which secrete hormones directly into the bloodstream. " Apparently, these hormones make the body feel better. As opposed to rubbing your eyes with a cut onion, which definitely does not make you feel better.

I never really subscribed to crying as a pastime. Oh, I never had a problem with other people doing it and plenty have cried on me over the years, but I didn't actually consider it to be "my" thing. I was never going to be seen to use tears as some sort of emotional blackmail. So, unless I was really, really angry or very badly hurting, I didn't do it. Therefore, very few people have ever seen me indulge in it. I generally just leave the room.

Lately, however, it's become a regular habit. One that is becoming much harder to hide. And probable cause, or reason is no excuse. I feel a bit of an emotional rip-off merchant.

I still feel like a blackmailer.

I wonder why I don't want to allow myself to feel?

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The Undiscovered Country

In the Undiscovered Country, in the soft unearthly light
Is the Homeland of our inner selves where our Spirits reunite
To at leisure ponder Lessons learnt, the trials we had to bear
To gather our resources well to fight another Fear
Change our race or colour, sex or origin of Faith or creed
And encounter the dizzy highs and lows of Triumph, Hate and Greed
Building Lessons for our growing into Honest, Good and Right
In the Undiscovered Country, in the soft unearthly light

~~ "I'll be back" - Arnold Schwarzenegger ~~

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