Tuesday, March 06, 2007

Can't sleep Okay.

Its about midnight and I can't sleep... I am too wired and angry. I know tomorrow is likely to be a horrific day, and my eyes are hanging out of my head but I just have to vent... so I can sleep...better than drugs...although the glass of wine I just poured out when I got home is a bit bigger than usual and qualifies as a drug... its cheap!

I just left Don at the Base hospital, something I don't ever like doing because as a Quad "things" happen when he is in any hospital life - threatening things, and they can't hear him at the best of times because as soon as he gets his mouth open they are gone ...but these days no one can really hear him because of his breathing problems which his bastard I'd like to throttle doctor could not see...

Turns out his right lung is collapsed in the bottom half, terrific...bad for any of us but for a Quad with limited breathing its a disaster...but not only that they "discovered" that both lungs are riddled with "extensive emphysematous" changes (emphysema to you and me) over 50% of both lungs... (he hasn't smoked since 1987 and his lungs were totally clear at that time in his case it is related to Quadriplegia...see link) and they have also found a suspicious "nodule" they need to look at...
numbers 8 to about 17...

and his GP didn't even notice his laboured breathing.

I have been in a red haze rage once in my life and I began to throw a cup of tea at Don (who deserved it at that time) but redirected it at the last moment and I copped the whole cup plus the roof got a drenching...(tee hee)...

But right now I feel cold and sick with anger at the neglect. Like a cold white rage. He has gasped for air for so long, not being heard because most are too impatient to let this very witty man of mine finish the words... he has lost so much quality of life..the intense tiredness has been frightening. Sometimes I would watch him when he "crashed" asleep for the 10th time in his wheelchair and check was his chest rising and falling...

Our world is so buggered up in its values. We all like to see and read stories about these things, and triumph over tragedy stuff etc etc...but ah! in real life, for too many its an inconvenience and they might want something from you so they "blank" you out. We get blanked a lot and laugh our guts out about it...because it is so obvious it really is funny. we may be wierd. Who knows or cares?

He hesitated today for a moment before the ambo's came for him - not wanting to experience the helpless and lack of autonomy hospitals mean for him... till I rather brutally said,

"Melissa (daughter) is getting married in May. Do you want to think of her walking down the aisle bawling her eyes out because you are not beside her...move okay."

(here he is in 1974 with Melissa)

I have just got to hope he survives them draining his right lung tomorrow morning (actually today) . because of the other lung damage they are cautious about doing it...but has to be done. I have got to hope he feels such a benefit from his improved breathing that life becomes good for him.

I have been holding myself inside myself for so long so as not to cry in front of him...if I cry he will know how hopeless I feel.

I know our time together is running out and I hope ...not now...not this time. We have been together for so long now...since he picked me up in a bar in newcastle (Australia)...the old Star hotel - there was a riot when they closed that one down...it meant a lot to lots of people who didn't like ordinary pubs...

I looked accross the bar and thought "HMMM!" and he did the same. He asked me what did I like to drink...and me having only $2 in my pocket (it was 1972) enough for 4 Ciders, said "Scotch and dry please" see how well brought up I was.

(us about that time - have posted before but we only had about 3 photos of us back then)

We had a lovely weekend at his place.. I wrote a poem about it of sorts... Its corny I guess these days but...its mine.

Might post it one day... but after that weekend we moved in together and have been together ever since apart from a 6 month period of the dreadfuls when we were sorting out issues...we sorted them out...and flew.

It has been hard. No shame in truth. It has been very hard. It has also been the most beautiful thing I could have ever had and I know this... I have always known this.

if there are "soul mates" we are...but oh the fights we had...two strong personalities... you all know the rest kiddies. I have run down the driveway in an old flanelette nightie barefoot when I heard one daughter sneaking out with a girlfriend one evening with Don calling encouragement from the bed...I stopped them...they were going to hitchike into town in eyelashes which would sweep up a butchers's shop and clothes which left nothing at all to the imagination...but we got em!!!

we have sampled gold tops in outside of Cairns ... let out kids nestle amongst us so they felt safe asleep, and been often wet into the bargain : )

We have made home movies with Don as the star always... he has been amazing... put a wig on him he is little fat Eddie from Hanging Rock... put an old man's blankie on him he is..er ..well himself...but if I ever learn to up load onto U Tube... (might have to leave town)

Right now I feel boroken hearted... but being an Aquarian, I will bind together my heart before morning, will smile and appear okay and greet a no doubt beautiful day...

Sometimes I wish and wish and wish he had never gone to work the day he was injured so badly... and I know there are worse things...much worse. People always tell you that...but this is pretty bad.

At last I can cry. I can never cry in the house when Don is home, but now I can...and no doubt it is overdue and the best thing.

We both know its only a matter if time, months hopefully a year or two till in this life we will be seperated...and I am pleased that I feel such a sorrow...at least it is real.

People die...I know that... but we are lucky because we have experienced real love without conditions but it took some getting to..wern't easy peasy.

Wrote this a couple of years back when he was once again ill... its corny stuff but from my heart.
The Man and Me.
Sleeping at night my palm opened flat on his chest,
Warmth feeding warmth, I know we are blessed.
No matter the day’s misunderstandings and blues;
No matter points made and lost;
No matter who thinks who’s the boss;
Sleeping always next to him is the life I would choose.

Re arranging pillows, blankets and such;
Both easy to fire off, yet both easy to touch.
Each unwilling to give way, equal to the end.
The Celt in us both, a marvellous brew,
Stirred and stirring, a wondrous stew.
Sleeping hand to chest our rousing battles mend.

Ah! And give me that fire, pure and unpolished,
And give me the spirit, no argument undemolished,
And give me the wickedness and its play,
Give me the empathy and knowing
Give me the common sense for our growing.
And let us wake hand to chest at the start of the day.

How dear to me is the man who breathes beside me at night?
How dear is the spirit, which gives his eyes their light?
How dear to me is the world we share?
There is no measure I can explain
But that his pain gives me also pain
And that our love is sometimes more than we can bear.

For me he stands, young, fair and clear-eyed as in youth.
For me, the things he feels I know, they are truth.
And I will hold these truths like rare and precious treasure,
For in a shifting sea of easy useless lies
The values of such truths are cherished ties
To the love which lives within the heart which is without measure.

So let me lie for hours, my hand upon his chest,
Thinking on the treasures with which we are blessed.
Such as our children treading out into the world to be,
Carrying the dreams of all our life;
Treasures as sacred as the man and wife
And as sacred as the love which binds the man to me.


rosemary said...

I think I said it before...you are a wonder. It is difficult at best to write about your best friend, your love, your husband...add to that the challenges the both of you face every day and it seems you do it with humor, the right amount of daily anger at the necessary things and exactness...that is what one means when they talk about the meaning of life.

Cazzie!!! said...

Please let me send you both positive thoughts and strong huggs, thoughts of love, encouragement to take breaths, long breaths, with the baby steps. Take baby steps, one at a time. Each step, let they be tippy toed ones...looking around, smell the scents, feel the Sun on your skin, hear that leaf drop, that whispered word fall on your ear. Know that the NOW is important.
The past, as you have beautifully written about here, IS about you both, it is what makes you such a strong bond... soul mates.
THIS is your respite, even if lovely Don is in hospital right now. YourSELF needed this, and Don needed to get in there and have this procedure done. Your common sence prevailed when you told him to get a move on. It is what he HAD to do.
You know, people are so full of shit if they say they never had a day where they fought with their partner, it is the battles and the making up at the end of it that provide us with the growth we need as couples, the closeness we feel for our loved ones.
Your poem is just so true, so lovely and so right!!! THIS is the meaning of soul mates, words said with the eyes, felt with the hands..often sentences finished by the other, things you would have said, that is what makes it special.
Thankyou so much for sharing your story and your poem.
I will check on you a bit today, and tomorrow, and I will meditate for you. Find a quiet place, a special place, and sit there quietly. Try to make your mind clear, no chatter, think of a lovely scene and go there. You can do it.

Keshi said...

Ur a strong girl. A very strong girl I must say. How ur dealing with this shows how much u love ur man. Good on ya!

ppl say past is the past...but I say that its the past that keeps us glued together...that makes us wanna be there for our loved-ones...that gives us the strength from within.

The pictures were beautiful. Those warm memories will give u the strength and courage to take it all in good stride and keep it going. ALL DA BEST!


JahTeh said...

I honestly wish my sister was doing the nursing for him. I would be able to tell you he was in the best of hands but she can't be the only good nurse around.

Sara said...

*HUG*, MC. Nothing worse than waiting. Your ability to write about these times is, as always, impressive. You're obviously stronger than the vast majority of people on this earth, and you do it with POETRY! How cool is that?

Sending good thoughts your way. :)

Middle Child said...

Thank you all so much... somehow hearing such good stuff back gives me a bit of heart...

Rosemary...we are are wonders...the world is full of wonders... thanks so much.

cazzie : ) you hit the nail on the head re respite so tonight I am trying to go to bed at normal time about 10.30 - no use going earlier... but am older than you and seem to handle about 6 hrs and thrive on it... sometimes five... but last night have to admit I was a bit scratchy eyed when I woke up.

Kezzie big thanks...and appreciation. With all the shit the world is still a really great place to be in. Sky is blue, sun shines, birds sing and our old doggie loves us... what more can we need?

Jahteh - I too wish she was. I came home tonight and am hoping he will be okay...he has multiple problems and when you try to explain them so they don't kill him, most look at you like you are a troublemaker...alls we are trying to do is stay alive...

Sara thank you. I am not that strong. I get hot flushes, fumble in my handbag, my feet hurt, I probably eat too well (good stuff not crap)But I believe we have a right to life and we all need to work towards protecting the rights of others to a decent life when we can...and I can. My mum and dad were strong... and tonight I for some reason feel them near to me and miss them sooo much... maybe there is an after life and I am being held... I feel rather weak right now...thanks Sara!

Constance said...

Blessings to you and he. I am sorry things are so hard.

M said...

i just wanted to send some love and light your way. there is nothing i can say to make you feel better, or take away your pain. but thank you for sharing it with us. i do think writing is good therapy...helps us process things and get them out.

Middle Child said...

Thanks Loving Annie and reiki 4 life... I feel a bit of a right sook after all the above...

am calmer now and got the Spinal Specialist feom Sydney to ring the locak quack who wouldn't take it in board the before he went into the lung he had to talk to Spinal experts...A lot of mechanisms of the body work differenty after a broken neck such as breathing... so am pleased now but not popular because I went outside of their bloody protocol.

Yesterday was a good day that way but glad when it was over.

Sling said...

It takes an extraordinary person to find poetry in adversity MC...I'm better off for having known you.
Excellent post!...thanks. :)

jin said...

Oh, MC!
*cyber hugs*
Sending you both light & love!
Wishing for things to go a bit easier for both of you.
You are one strong lady!
Hang in there!

Dan said...

MC, hugs and kisses my sweet friend. Please hang in there. You're one of the strongest women I have met on the blogs. And one of the most inspirational.

mirk said...

I'm sort of lost for words! It is true you can find real love as you have and quickly. Purr and I were engaged after 3 months and have been together 20 years. You know our thoughts are with you.Hang in there kid.

BwcaBrownie said...

Love and best wishes to you both from me too.
Keep venting, rage at the moon and empty the drinks cupboard.
xxx brownie

Middle Child said...

Sling...thank you... I don't think anyone other than my mother has actually said that to me... its a lovely thing to say...needed at this moment...and not soon forgotten : )

Middle Child said...

Jin - i keep hearing this word strong...oft times I just want to fold up and let someone else take care of things...I am no stronger or weaker than most of us...we do what we must because we can because we love

thank you so much

Middle Child said...

Dan...many thanks...unsure about this strong bit...can be dreadflly human most ofthe time...but thats what I am I guess...with all the warts and all

Middle Child said...

Mirk...glad to know some of you are so unrespectable as we were and just went fo it...it is goo fun even if we are not sooo young these days ; )

Middle Child said...

Right oh Go away please am emptying drinks cupboard as we speak hee hee.