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.