Autumn in Castlemaine - generally the days are clear, sunny, warm and the nights are crisp. Lovely.
My recent bad experiences with service providers pushed me towards self-managing my care. We, my carers and I, have been going it alone for two weeks now and are getting along fine without a service provider. Better than fine. The two 'old' carers who came with me have both said they're happier this way and that I should have made the move long ago.
I began training the first of the three new carers needed to make a full team about a month ago and am presently getting the third of them up to speed. Once these newies are settled in life (carer life) should be easier and less hassle for us all.
Two or three months ago I sent Ellydd Gate, the first book of my Drinsighe fantasy adventure trilogy, to Gemma for the final, quick proof-read. Naturally I hoped uo get it back in no time at all. Yesterday Gemma emailed that she would be finished by Monday. Thank goodness, because I want to get it to the publisher as the first step to getting it out of my life. I'm so over it.
In fact I'm over the whole trilogy. I'm meant to be doing changes to the second book, Arathae, to get it ready for editing, but I keep putting it off. I've always written because I've enjoyed the creative process, but I've let Drinsighe drag on for so long it's become an unentertaining chore. I open the Arathae.doc file every morning intending to work on it then I usually squander the day playing solitare instead. Today? At present I've got good intentions, but ...
... ... ... ... ... ... ... ... ...
Ever since my stroke it's bugged me that a few people treat me as a mental defective and that a considerable number act as if I'm simply not present. Whenever someone came to see me, both in hospital or at home, Rainbow would stress that even though I could no longer talk I could hear and think quite normally and I could communicate slowly. Nonetheless some people would look at her exclusively and ask about me and my wishes as if I weren't there.
‘Do you think Danny wants some of this?’
Time and again she'd have to remind them ‘Danny can answer for himself - ask him.’
I remember an ambulance officer and an elderly nurse who each used a ‘There, there, little boy’ tone and attitude with me and shouted slowly and clearly something like:
‘Sun nice. Want drink?’
Nowadays I have a communicator so when these sort of people surface I type very politely ‘Get stuffed.’
That condescending sort of thing has all but stopped now that I look more alert and with it, but the problem of people addressing my helper instead of me still hasn't abated. Until I learned to actively project my presence some people ignored me a lot.
On many occasions in PHH nurses would help each other with the hospital trick of making beds with bedridden patients lying in them. I'd lie in bed while two bed-making nurses rolled me back and forth and chatted openly to each other about their sex lives and proclivities and the bowel performances of every patient on the ward. Replacing the bottom sheet requires considerable handling of the patient, but as I couldn't talk they acted as if I couldn't hear - or, worse, as if I didn't matter.
There have been a few times when my present difficulties and the forty years of difficulties that lie ahead have so depressed me that I've wished my stroke had clobbered my mind as well as my body. If this'd happened I'd be in some happy little world of my own, oblivious to just how badly off I am. Of course, at these times my cursed never-say-die attitude would surface and I'd restart the daily battle. I say cursed because if it weren't for that attitude I could give in and lie back and I'd have my every bodily need catered for. Pity there's more to life than just bodily needs, isn't it?
Before I left BHHA one negative older nursing sister said to me: ‘You'll find it's hell at home and you'll be back here within six months.’ She was half-right - it was hell, at first. As I couldn't move the manual chair I had then I'd bake in the sun or freeze in the shade. Mossies, flies and ants had a field day with me. I'd get the urge to pee so badly sometimes while Rainbow was out shopping that I'd wet myself - it was hell, but there was no way I was going to voluntarily go back to prison.
For the first few months it was hell, but the only one who can be partly blamed for that was me. What quad in his right mind would live in the isolation of the bush in rather basic conditions with just his grossly overworked wife to give him assistance? What mute quad in his right mind would choose to be left for hours well away from the house in a manual wheelchair? There wasn't any way I could attract attention when I needed help. When I finally got an electric wheelchair this problem was overcome as I could drive back to the garage and repeatedly run into the shut door until I attracted Rainbow's attention.
In hospital there was usually a charge sister with four more nurses under her control. All of them were well paid to do nothing but care for the ward's patients. While existing on my invalid pension, Rainbow had to do every bit of the seemingly endless work involved in caring single-handed for all of our family under less than ideal conditions. It's obvious I was expecting too much of her, as those pressures and the workload contributed to our eventual break-up. I'd been used to our pre-stroke GTG lifestyle and I'd loved it. Timing. Two years later I would've been more amenable to renting an `all modern conveniences' house in town to make our life so much easier, but back then I needed GTG. I had been confined both mentally and physically in ordered sterility for too long. I needed a few months in the bush environment to get me back on an even keel.
Just like everyone else I need to pee sometimes. I could easily not have mentioned anything about it anywhere in this book, but I'm trying to give you as full an understanding as possible of as many of a quadriplegic's problems as I can. Just about my entire life now is scheduled around, or determined by, my need to pee. Many quads have no control of their bladder, so they have to have a catheter fitted - down there - to allow their urine to drain automatically into a plastic bag strapped to one of their legs. Catheters are bad news as they are often left in place permanently and are sometimes a prohibition to having sex.
I have bladder control and full-body normal feeling, so I can tell when I need a pee and can hang on a while. A urinal bottle must be placed between my legs for me to pee into, which is no great drama in itself. If you're visiting friends, or if you're out somewhere, you can usually disappear for a pee without causing too much disruption. If I want a pee just about everything stops, as my companion must terminate the conversation totally while she wheels me somewhere private and helps me. I hate my need to pee being such open public knowledge and it causing a major disruption, so before we ever leave home I must think about how long we'll be gone, whether to pee beforehand, or whether I'll be OK until we return.
Rainbow had to go to the laundromat nearly every day because our baby and our three-year-old were still in nappies. Before she left she always asked if I wanted a pee, but I'd usually be totally devoid of the urge. Just two minutes after she left I'd often feel some slight stabbing pains in my bladder, and my heart would sink. I knew I had hours of agonizing battle ahead of me before she returned. Sometimes I wouldn't be the victor. I'd be on top of it for every loooooooong minute of the three or four hours, and then I'd hear our car picking its way along our track.
That last minute or two was usually the worst time by far, and sometimes I'd actually pee myself in that little time before she arrived.
Rainbow tried, I'll give her that, but so often our days would end in long bitter arguments. After being on the go all day she'd get dinner then after it would be bathe the kids and get them to bed. Up to that time of night she would've been putting me off and putting me off, as she felt she was too busy during the day to spend much time letting me talk. I'd be looking forward to this peaceful end of the day as I'd be anxious for us to talk. Often, we would have gone two or three days without me being allowed to spell more than a couple of sentences. I'd eagerly indicate that I wanted to say something, but my hopes would be crushed.
‘Not now Danny, I'm too tired to concentrate. I just want to watch TV until it's time for bed’.
After a few nights of this I'd complain, we'd talk about it, I'd accuse her and she'd accuse me. We never reached a satisfactory settlement, but both filed away those barbs and they became more straws on our relationship's back.
... ... ... ... ... ... ... ... ...
May 16, 1977 - Ketama, Morocco
Fez's a large dot on the Michelin map of Morocco, which was colonized by the French last century. Fez's obviously a large town, going by the size of the red Michelin dot, a small city maybe. We're taking a roundabout route there - a hundred or a hundred and fifty kilometres along the Atlas Mountains. Or are they the Rif Mountains? I'm not sure which name's right, but the map will tell me later. We're winding along a mountainside and Rainbow's been staring down a four hundred foot drop for a while now.
Out of nowhere we’re attacked by an old Toyota. It's got dented guards and no doors. Its horn's blaring and the four youths in it are yelling and waving threateningly. The passenger side youths are leaning out, thumping on my side of the Kombi. We slew and stop with a slither as I brake hard. Our attackers stop too. They pour from the old heap thumping both of our hastily-locked doors.
‘Buy our hash!
Double A, Number One Sputnik hash!’
‘Extra good shit!’
They're all on one side of us now. They're rocking the van and Rainbow's staring down the four hundred-foot drop.
‘BUY SOME! BUY SOME!’
We thrust money at them for the hash and the Kombi stops rocking. Effective sales technique, that.
Some time after our spontaneous purchase we pull up at Ketama village five kilometres on, five shaky, slow kilometres, with the glove box holding the recently-bought hash. We pull up at an old mud cafe with the universal faded Coke sign, (ubiquitous?). A policeman and two friends sitting on a bench sip chi impassively while seventy-three screaming youths surround the Kombi vying to thrust blocks of hash in our open windows - pandemonium.
‘Buy my hash!’
‘Stay at my home!’
‘Sleep at my home! Eat at my home! Meet my family, my mother, my grandmother! We are very honest and we like hippies very much!’
‘Double A, Number One Sputnik Good shit!’
The policeman elbows through to the Kombi and surveys all around silently. He points at one of his seated friends ‘You go with Ahmed – now.’
Ahmed climbs in, we go, and the policeman goes back to the bench. Ahmed speaks Arabic - and he speaks good English, Italian, German, and French of course.
Ketama's where a lot of the dope's grown in Morocco. It's the `hippy' Mecca of North Africa during the holiday season in Europe, Mecca for `hippies' speaking English, Italian, German or French. The local youths learn it all, learn it from the two or three pilgrims each week, many more in summer. City youths have a smattering of foreign tongues for the tourist dollar, but Ahmed's about thirty, no touting youth. He's a farmer, a dope farmer who has learnt them all to cut out the middleman whenever he can.
We turn left off the main road after the third field of marijuana from the cafe, up the rocky hill between more such crops, and there's Ahmed's wife and baby at his one-roomed house. Rachid, his Berber wife. Attractive, colourful, smiling, shy Rachid with a silk scarf around her shoulders. Unnoticed, she kills and cooks the rabbit, the `special event' rabbit. She kills and cooks the rabbit that's on the couscous tonight because of us, so proudly atop the couscous.
Ahmed beams so proudly with meat on the table and I'm looking for a small rock to hide under. I'm feeling so small telling Ahmed small-ly ‘We don't eat meat, can't. It's been so long we'd be sick.’
Beams fading, Ahmed questions mutteringly - ‘Are you Hare' Krishnas?’
Even worse, Ahmed - we're vegetarians. He plucks Rainbow's meat for himself and mine too, Rachid not even considered. Being a Moroccan female she sits and eats apart, never to join us and Ahmed, who rolls a J or two, and who after we've all eaten the couscous makes hash.
At Ketama they know hippies with vehicles come to buy kilos to smuggle back home, big buyers, so we get royal treatment. At Ketama they take car-driving `hippies' home -
‘`Sleep at my home!’
‘Eat at my home!’
‘Meet my family, my mother, my grandmother!’
‘We like hippies very much!'‘
They take us home at Ketama, they fete us at Ketama, and they ply us with dope at Ketama, just like Ahmed's doing now. But no ‘Double A, Number One Sputnik hash!’ from him and no ‘Extra good shit!’ either, because his hash speaks for itself. It's speaking in my head now. It is what it says it is, and it says it's Double A, Number One, Sputnik hashish!
Ahmed always says hashish, too. But he's no nonsense. No sledge hammer tactics for him, no Toyota attacks or screaming appeals, just small hammers always banging away -
‘We can weld a secret spot under your van.’
‘The secret spot it will carry five kilo, ten, no problem.’
‘They will not find the secret spot’.
He shows us how hashish is made. He strips the leaves off a large armful of dried plants from the mountain in his storage shed, he ties Rachid's scarf over a basin like a drum skin, he takes a handful of leaves and rubs them on the silk, not hard, the dry leaves crumbling.
‘The marijuana dust falls through my wife's scarf.’
He sweeps the crushed leaves off the drum.
‘For very good hashish I do not rub hard.’
He rubs a fresh handful, not hard, the dry leaves crumbling.
‘I rub only the marijuana dust into the basin.’
He sweeps, he rubs, he talks, he sweeps, he rubs, and he talks.
‘Many of the farmers rub too hard and a lot of leaf crumbs fall into the basin too.’
He sweeps, he rubs, he talks.
The armful of whole leaves is going down; the pile of crumbled leaves growing.
‘We make kif with these broken leaves.’
(Kif, Moroccan man's best friend, except sometimes hash is. Kif's often sold by local cops in the country; call at the gendarmerie and ask for it at the counter. Ahmed tells us they mix tobacco and rubbed leaf to get kif. He lights a pipe of kif and shares it around. He sweeps, he rubs, he talks. The whole mound of leaf is going - going – gone.
He removes the scarf to show a mat of grey-green dust, he moulds the dust into two golf-ball shapes in foil and rolls the balls flat with a an empty bottle. He heats them, still flattened and foiled, on a hot plate, but not too much heating. Too much heating makes the hashish blocks black, crumbly and weak. He rolls some more, all done. All done. There's about an ounce in all.
We try it then we buy it at the going rate, the street rate, the Toyota attackers' mountain road rate less a bit - sixty dirhams an ounce, fifteen Australian dollars.
‘We'll be back for five kilos at the end of our time in Morocco. Maybe even ten.’
That's a lie, but it's a lie to stop the hammer blows that never stop. A lie that lets us say goodnight, to Kombi-sleep near the marijuana shed.