I said in the last post that I'd talk about the problems my lack of speech causes, but I really don't want to at present. It's THE most negative part of my situation, and I'm averse to talking about negatives. I reckon this mute quad business could possibly get me down if I dwelt on the negatives. I've got through thirty years of quadriplegia by being superficial about it, by not often going to too deep into its shitty side. Let's keep it that way for now.
My writing ... Ellydd Gate is all finished and just awaiting some fiddling of the cover design for the web sites. I'm back into going through Book 2, Arathae, for one last time before I send it off for editing. I'll probably stretch it out for months and while I'm working on it I'll probably avoid pushing Ellydd Gate out of the nest. I hope that's not the case.
I'm up in the air right now about this writing-versus-publishing conundrum. I think I'll give this blog a miss for the foreseeable future and concentrate on the books, whatever I decide to do with them.
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Granny Thomas Gully, Campbells Creek, Victoria. 1987.
I'd come home from Bendigo Home and Hospital for the Aged about a month before Christmas, so once the festive season had passed I began attending the local home and hospital for the Aged for physical therapy. As was the case at my two previous hospitals, the staff there spared no expense on me. Two of their social workers and two of their occupational therapists visited me at home regularly to ensure that I had no problems. Of course I had problems, but they were my problem. My major problem with these people was convincing them that I had no major problems that I wanted them to tackle.
My therapists didn't take long to realize that I was trying fiercely to retain and extend my limited independence, and they actively encouraged my willingness to try nearly anything to improve my lot. Those staff who weren't regularly involved in my rehabilitation, including many nurses, were hard pressed to believe that I didn't need or want anything remotely like full-time baby-sitting. Often they'd see me as a poor defenseless quad who needed coddling, whereas I saw me as sort of invincible. Expert doctors had once written me off as a hopeless terminal case, but I'd survived. I was confident that I would only get better at my new life as time went on.
I'm sure I've never come across any hospital therapists who weren't expert at their job and totally committed to it. It was quite understandable that I'd try to buck the odds to improve myself. In fact I believe this must be the most common course of action for quads. Quadriplegia is the pits. It's a lousy way to live. It’s shithouse. I can't imagine any quads not trying to make their situation better. Of course, I've got it easy. Twenty years of training as a distance runner shows I get a perverse pleasure from having done hard work. Also, I'm a typical determined, stubborn, pig-headed Taurus. I had every reason in the world to try, but not so my therapists. The task of rehabilitating me must have seemed impossible to them, yet day after day they tried as hard as they could.
My stroke left me totally immobile below my neck, but Physio and OT and time all contributed to my minor but obvious physical improvement. Over time various physiotherapists and occupational therapists could take slight heart from my gains, but my three successive speech therapists have always been well and truly behind the eight ball with me. From day one until day seven hundred and thirty three or whatever it is now my vocal improvement has been absolutely nil. At each hospital the relevant speechy handled my Etran board well. Their regular work with non-talkers made them sensitive to my need to communicate, so they'd take time to talk with me.
‘I've been looking up the medical journals, Danny, but I could only find seven other cases of locked-in syndrome (LIS). In every case they died within two years.’
This is a misleading fact. LIS sufferers are usually elderly and frail, so the stroke itself and the completely isolated non-life it causes makes most sufferers peg out fairly soon. Prince Henry's had more comprehensive files than BHHA so Physio found fifty documented cases worldwide. Not one recovered fully. Rather than faze me my odds of recovery gave me more motivation to try. I used to prefer to win races from way behind, because it looked good. The idea of beating these insurmountable odds appealed to me.
‘Does it ever depress you, Danny?’
Of course it does - I'm not stupid. In some ways I'm lucky. Unlike most people, I've got the chance to really try to make something of my life. God - this sounds a bit heroic, admirable. I'm not like that at all. All I'm doing is trying to make my unfortunate situation better. There are a lot of quads who exist in pain or depression or misery and have literally no way to improve their lot. Many are unable to do anything about this, but a lucky few find some way to end the agony by killing themselves. At the other end of the scale are some even luckier quads like me. Our particular situations or our inherited mental make up let's us feel hope. I may never improve much, but I can still be seen as having been extra lucky to have always been sustained by hope.
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May 31, 1977 - Todra high-plains, Morocco
We're not the Marakesh express travelling non-stop and straight. We're wandering to Marakesh, stopping often and detouring at fancy. We detour off the direct bitumen onto unsealed roads and back roads and tracks. The sign ahead is pointing to the left - `Gorge de Todra 20 Km.’ Rainbow checks the Michelin's and it says, in a mappish voice - ‘North up gorge de Todra for maybe twenty kilometres, forty kilometres of dirt road west to gorge de Dada, then south down Dada to the Marakesh bitumen once more.’
We drive twenty narrow kilometres to a stony car park and a kiosk. There's a tour coach with Morocco plates and four cars with Morocco plates in the car park, and the kiosk's any kiosk anywhere. Through the wide windows we can see tourists and souvenirs and postcards and tables and stuff. We don't go in.
The attraction's a two metre wide crack in a rock-face and the wider gorge beyond. The crack's fifty metres long, fifty high, with a hard-packed gravel base, a road. The Kombi fits, but the tour coach wouldn't. The gorge's ten metres wide, sometimes twenty, with a gravel track/road beside a dry river. There's fordings a-plenty, but no bridges - and no tourists - no cars all day from the rock gap.
Gorge Todra wanders roughly north south. It's a fissure in a windswept flatness, in a flat high plain with springy grass tufts. The windswept flatness is fifty metres above us, sometimes a hundred. There's no wind in the gorge, and it's warm to hot down here today. The gorge runs northwards for ten kilometres or twenty or more then it fades up to the plain overhead to become a windswept flatness, a high-plain with springy tufty grass, grey-green and springy - the kind of grass that launches hares from bound to bound.
The high plains are edged with far-off snow-capped mountains, indistinct grey-blue mountains with a white topline and high in the sky above them I imagine I can see gliding eagles that press the mountain air to earth. There's always a cold wind up here, I reckon. It just looks like that sort of place.There's a shepherd far-off with his flock and soon there's a second flock closer with a second shepherd. Flock? Sort of. It's a herd of goats and two hobbled camels.
There are low hills ahead with two low tents snuggled against them, snuggled against the leeward side, out of the cold wind. Two large dark tents, low and sweepingly romantic - heavy, dark, woven camelhair tents hugging the ground with the wind flowing over their low-slung shapes. They're an excuse to stop early.
We camp the Kombi windward of the hills in a gully with the cold wind just sweeping the roof. Soon there's cautious approachings from the tents and not so cautious approachings from our Kombi. The approachings meet halfway. Two young Berber women sit amongst the springy grass tufts with us - they're attractive with multi-coloured colourful clothing and shy white smiles. They giggle shyly, blue tattoo lines on their faces, not very many lines though. Berbers.
There's a two-year-old girl too. Same clothing, same shy smile. She's got no blue lines on her face, but she's a Berber still. She giggles shyly and an older woman joins us from the tents - wrinkles and many more blue tattoos, faded. The kid's Nana? They speak no English, no French. Our Arabic's just single words, but today very few of our few Arabic words are understood. It dawns on us slowly that there must be a Berber dialect of Arabic or something like that. Spoken language is no barrier to communication though. Body language, hands, expressions, voice tones, ground-scratched drawings, exclamations, claps, smiles, laughs - all these things can say volumes.
The two shepherds are the young women's husbands, and the two families are semi-nomadic - they leave the high plain each year when the snows and sleet arrive.Names, ages, diet, herd numbers - such things are easily asked and understood.We're man and wife and we're trying hard for children - which are both lies to please them. We're English, seeing they have no knowledge of Australia's existence.
Yes, we'll eat with them tonight when the men get home. We're students on holidays, and yes, we'll eat with them tonight when the men get home. My father's a sheep farmer, because they can't catch on to anything much from the world beyond.And yes, we'll eat with them tonight when the men get home. Rainbow's father is, would you believe it, a sheep farmer too, and yes, we'll eat with them tonight when the men get home.
When the men get home the women make dinner and to their delight Rainbow works with them, adding fresh vegies to their months-long plain diet of wheat-and-herbs couscous and goats' milk.