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It's my favourite second daughter's birthday today. Happy birthday, Bedou!
You may remember that a few weeks ago the American National Spinal Cord Injury Association asked me to consider a question in an article for their magasine, Life in Action. I've included it here as it ties in with the general thrust of this blog ...
My wife and I are looking to start a family despite my recent spinal cord injury, and I’m wondering how others with spinal cord injuries or disorders raise families.
I’m a mute quad confined to an electric wheelchair. I’ve been that way for nigh on thirty years. I began this quad career with a wife, a two year old daughter Gemma, and a three month old daughter, Bedou. Those two kids never seemed to have any issues about my situation. We were a normal family.
Up until when Gemma was about six she would sit on my lap, and Bedou perched on the back of my wheelchair seat, and off we would go the couple of kilometres to the local swimming pool or the playground or the park. In their teens they would take it in turns helping me with the weekly grocery shopping, etc.
At the time I was just doing things with my kids, but looking back now I can see it’s possible that I believed the more normal, everyday things I did with them the more they could accept their dad as reasonably normal despite his disabilities.
Fifteen years on my wife had become my ex. Though I was separated from Gemma and Bedou I had the standard access and they’ve been great to me to this day.
Another beautiful young woman began living with me fourteen years ago. A year later we had a daughter, Jezabel. It was happy families for the five or six years before Jez started school, then it started to get to her (Jez) that her dad was different.
She began to distance herself from me in public. She hated it if I was in the van when we picked her up from school and would stay clear of me if we picnicked in the park, etc. It seemed she couldn’t handle being, um, associated with someone so different to the normal dad.
‘She’ll grow out of it’ we said time and again, but she hasn’t. At home we get on like a house on fire, just a dad and his daughter, and she has no problem with my disabilities. In fact she often responds to me and helps me more than she does to her mother. But her In Public difficultly with me ticks along as it always has. Of course she’s becoming a teenager now, one of the many teenagers who desperately need to be no different than their peers. She is a good kid, very bright and very accomplished in many areas, so I have every reason to believe she will come good in time.
Kids can generally deal with disability better than we give them credit for – in fact I’ve found that they are better at it than many adults. I think that if you really want to be a parent and if you are able and willing to engage with your kids emotionally and intellectually and at least partially physically then you should go for it.
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August 12, 1984 - Prince Henry's Hospital, Melbourne
It's like this every morning - I'm wide-awake long before anyone else. This morning it could be because I'm leaving today, but usually it's because I don't sleep very much. I figure my body probably doesn't need much sleep now. It doesn't need to rest up, because I never do anything to get tired - just an hour or less of physio most days and sitting in a lounge chair the rest of the time. I used to sleep nine or ten hours, but that was when I was slaving like a madman on the house most days, running ten kilometres a day and getting stoned after tea every night. That was way back in my last life - last year!
I just sit around doing nothing all day now. Sure, there's OT and physio and they can get hard when your muscles can't ever move, but it's not gut-busting, sweating-like-a-pig, pulse-doing-one-ninety-five hard. There's only one thing that gets my pulse going now, though it does nothing to my guts or sweat and that's the splurge that comes from the Other Woman doing her stuff. That activity makes me drop off a bit before my usual one o'clock, but I'm so untired all the time I still wake before five.
Talking about the Other Woman - you're probably wondering how two people who only see each other during the busy evening visiting time find anywhere private to get it on. We have a very involved and sophisticated system - she pulls the curtains around my bed and she turns my radio up a bit and away we go. A couple of times nurses have walked in on us by accident and it is by accident because they've been instructed to give us a wide berth at these times.
It's only ten past five now and it's going to be a miserable day outside. From here I can just see through the gap at the edge of the blind and it's still darkish out there, dark grey and rainy. I hope it's not like this when we get to Bendigo later, but it is still winter.
Shit, there it goes! I don't jump nearly as much now, because just about every day starts like this with some sudden `accidental' noise. It sounds like a nurse `accidentally' knocked an empty bedpan just now. There it is again. Just in case anyone was still asleep she repeated the self-same accident, but this time she made it noisier.
I reckon if I used one of those cold stainless steel bedpans my bum would pucker up like a prune long past its use-by date. I don't have to use one, though. Like most of me my bowels don't work. They shove some sort of bomb up my bum every morning and sit me on a commode, after which they wheel me into the shower.
Yesterday they didn't need to think up an accident, because one of the old dears across the corridor kicked the bucket during the night. No-one knows exactly when she set out for the pearly gates and St Peter. The nurses were turning her from side to side every two hours (they say it's to stop bedsores, but go a few months being woken wide awake every two hours and you'll know different). This sadism didn't stir her all night, but they merely observed that she was sleeping like the dead for a change.
The awful truth clicked at about four in the morning and they rushed to check the old lady. They created muted bedlam in their standard nurses' way, because they had to get rid of the rather stiff old soul before her dottering cronies woke up. A dead seventy six-year-old on display where the average age is eighty-nine isn't very good for patient morale.
Things like early morning fires and early morning body snatches aren't everyday occurrences in hospitals, but they're greeted as welcome bonuses by the staff. Nurses the world over believe if they have to be awake before daybreak the patients should be too. Their imaginations are stretched to the limit trying to think up innocuous accidents, so natural things like deaths and fires are welcome indeed. It's OK if we're not full of beans - they're happy if our sleep's been disturbed and if they can maintain enough innocent background noise to ensure we don't drop off again.
They embark on a long-term campaign to destroy our sleep just before dawn each and every day, but they know they're treading a fine line - they know they mustn't appear to be the early morning sadists that they are. The morning before Thingo's barbecue they kept me awake with silence. I woke at about five out of habit and I lay there waiting for their terrorist tactics to begin, but the quietness of the next half hour terrified me so much I just lay there in the dim night-light hardly daring to breathe. What's wrong? Why is it so quiet? Why aren’t they makes any noise?
They'd woken me that morning by doing absolutely nothing, but today we're back to something not quite so subtle.
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April 1976. Turkey.
I’m leaving Istanbul by bus. It’s going to take four hours to get to the border, so I’ve got time to catch up on my travel diary.
The elderly gentleman on the train from Izmir was a Pole, Krzysztof Jachowicz. I had to get him to spell it. Twice. And then write it. Krzysztof Jachowicz. He didn’t know English and I didn’t know Polish, but we discovered a conduit in French. My French is, ummm, not all that good. His was no better. I did six years of high school French, but even with all that I couldn’t hold a conversation or read a book or follow a film. About all I could say fluently was Comment allez-vous? and Voulez-vous coucher avec moi? and Merde. Says a lot for French teaching in Australian schools in the early sixties, doesn’t it?
Krzysztof and I chatted laboriously all the way to Istanbul, often resorting to charades and even drawings. He was seventy. He had a wife back in Poland. This was his first ever time out of Poland. The communist regime had only allowed him a fourteen day travel permit. They hadn’t let his elderly wife accompany him, this gentle old man told me bitterly, ever so bitterly. She was their guarantee that he would return.
‘Why are you spending your once-in-a-lifetime trip in Turkey when you could have gone anywhere in glittering Europe?’ I sort of asked very slowly.
‘I’ve been asking myself that very question’ he sort of answered very slowly. ‘Ever since grade one at school Turkey has been a magical dream for me. I just had to come here. I shouldn’t have, though. I should have just kept it as a dream.’
‘Remember, I can’t speak Turkish’ he sort of added, leaving off ‘remember.’
(Imagine, kind readers, how long it took to get me to understand that in our stumbling French.)
‘Baise’ I thought in French, seeing French was the order of the day. ‘He’s trying to tell me in his gentle way what a shithouse time he’s had. He’s been traveling around Turkey for nigh on a fortnight having a hard time just getting by. He’s had to rely on charades all that time. Some holiday. I’m sure I read somewhere that there are only two people in Turkey who speak Polish. They’re both linguists at Istanbul University. There is a mullah in Ankara who can read Polish, but he’s been bedridden for fourteen years. (I’m guessing that’s what it said in the torn Japanese comic I found in the lobby of a hotel in Singapore.) And I don’t think French speakers are too thick on the ground here, either. He’s heading home the day after tomorrow. I better hang around with him until then.’
I didn’t know much more Turkish than him, but I knew he’d feel better if he wasn’t by himself.
I checked my travel book for cheap accommodation before we reached Istanbul. By the time we got there any youth hostels would be shut for the night, so I chose one of the cheap hotels. It was dirt cheap. The train got to Istanbul a bit after eleven. I wasn’t about to try to find my way around a strange city late at night, so we took a taxi.
The Star hotel was down near the waterfront. Dismal, deserted streets. No wonder it was dirt cheap. Take the seediest hotel you’ve ever seen in B grade black and white American movies of the nineteen forties and multiply the seediness by a factor of ten. Add a half-dressed, dirty, sullen, huge Turkish proprietor with the barest minimum of English. Add the impression that the worst of the city’s lowlife sleep here. Now you’ve got the Star. Huge Guy said ‘’Otel full.’ at us accusingly as he led us up the dark stairs, bare, and along a dark corridor, bare. He stopped outside the only door with a glimmer of light showing under it. ‘‘Otel full’. he threw at us again before shouting something Turkish through the door.
He opened it immediately and beyond his huge body we saw a bare room bare except for a single bed. We followed him into the room to a surprise. He wasn’t surprised, but we were. There was another single bed we didn’t see from outside. Huge Guy’s brother, or someone very like him, was sitting on it and Huge Guy’s other brother, or someone very like him, was standing in front of Sitting Guy, facing him. The first things that surprised us were the brothers’ flabby nakedness and their very obvious, ah, erectness. Obscene.
‘Non’ Krzysztof muttered, aghast, after first being aghast in Polish.
The next surprising thing was that neither the Brothers nor Huge Guy himself were very perturbed. The final surprise was when Huge Guy indicated that the vacant bed was for us.
‘Non’ Krzysztof yelped angrily.
I didn’t say a word. I merely turned toward the door and guided him out and along the bare corridor towards the bare stairs.
‘All ‘otel they full.’ Huge Guy threw after us dismissively.
I knew that if we left this hotel we’d be well and truly in the shit. Two foreigners wandering the grimy armpit of Istanbul in unwelcoming midnight. But I didn’t falter. True to my mother’s example I was determined now to cut off my nose in spite of my face.
‘All ‘otel they full’ called Huge Guy uncertainly, still back at the Brothers’ doorway.
I waved back over my head as I started down the stairs. ‘Allashmarladik.’ (If Allah wills it, or Bye bye.). (Thanks for your crash course in basic Turkish, Shepherd Boy.)
‘Room? Room?’ asked Huge Guy beseechingly, from right behind us.
Christ, how did he get here so fast? He was opening the door of the room closest to the stairs. He implored us to check it out. It was the same as the other room, but it had lino on the floor, a low chest of drawers between the beds and no Brothers. No anyone, in fact.
‘Same money. You pay tomorrow’ said Huge Guy in surprisingly passable English.
Krzysztof and I both nodded yes, neither of us really wanting to be on the streets at this time of night.
r the next two days I accompanied Krzysztof to a few of the main sights around Istanbul. Not all of them. I’m not into that I’ll see everything if it kills me stuff. I made sure Krzysztof took the book he was reading when I met him on the train and I took the exercise book I bought in Mitilini. (I didn’t take my typewriter with me when I went to Mitilini because I needed a break from writing. From real writing, that is. From book writing. But in Mitilini I remembered about my unreliable memory. I forget some of the more minor details of things if I don’t down write them down. For instance, I’m stuffed if I can remember the exact date of my marriage. I’m almost certain it was in nineteen seventy one and I’m pretty sure it was in May, but I can’t remember the date for the life of me.)
Krzysztof and took it easy, balancing tourism with down-time in coffee shops and resting places like Ihlamur Kasri (the Sultan’s royal gardens). I was worried I was being too laid-back for his limited time, but he assured me he enjoyed our relaxed times of reading and writing and people-watching far more than our mandatory forays into tourism.
Wasn’t I terrific the way I stepped in unasked and looked after him, turning his dream holiday from a hard, barren slog into at least a couple of pleasant memories to take home? Wasn’t I just so unselfish and wonderful? Aren’t I one of God’s good guys walking this earth hardly recognized and under-appreciated??? No, Danny, you’re not. You’re an unmitigated bastard. An absolute fucking shit. Self-centred beyond belief. How often in your fucking pathetic excuse for a life do you get a chance to do something really good for someone else? Doing good by Krzysztof was one of those few chances, but you stuffed it up. You turned it into being all about you. All you had to do was give him two good days, but you couldn’t even do that. You started to whinge to yourself about how he was invading your precious bloody space and how he was encroaching on your stupid frigging independence. Oh, you didn’t actually say anything about it, but you’ve always been an expert at getting your message across without words. You made him feel just so bad. You made him acknowledge to himself that he was imposing on you.
It’s true I messed things up, but only for an afternoon. It all got on top of me. I simply couldn’t take it anymore. Krzysztof had been like my shadow for a day and a half, but unlike real shadows he didn’t go away when the sun went down. He was always there. Right there. I’d decided to befriend him for the rest of his holiday long before the train from Izmir got to Istanbul, but I’d over-estimated my ability to interact like a normal human being.
I thought I wouldn’t mind him taking the back seat and letting me do everything that involved dealing with Turks, even though he must have known as much Turkish as me. After all, how much Turkish did I know? Shepherd Boy had rattled off all sorts of stuff that night in the stone thing, but all I’d retained was Hello, Goodbye, Please, Thank you, the numbers One to Five, Where is it? and How much? Charades did for the rest.
I was doing OK for us both getting meals and drinks and directions and stuff, so it was only natural that he should leave it to me. He was a gentle soul, bent on not being a burden or a dissenter and content to take my lead.
I didn’t mind this at first. It was exactly what I expected. But after a while I began, unreasonably, to resent it. Knowing that this resentment was unreasonable I looked away and let it mutate into a resentment of his very presence. By mid-morning on the second day I was beginning to wallow in my misery. By midday I was grumpy as hell and letting it show. I devised a diabolical deception during our long-lasting leisurely lunch, then I perpetrated it on the poor Pole. I suggested we go see Kapalicarsi, the Grand Bazaar. My Lonely Planet said it was a covered bazaar of about five thousand shops, an Istanbul must-see. I conveyed this to Krzysztof, with our standard difficulty, but my real reason for taking him there was because I reckoned it would be easy to lose him there.
The Grand Bazaar wasn’t like I expected it to be. What did I expect?? Ummm - nothing specific, I guess. Just a vague idea/impression of a lot of busy temporary stalls under the cover of individual tarpaulins. After all, it was a covered bazaar. I was partly right about it. It was busy, but it wasn’t temporary and it wasn’t held under tarps. In fact, it was as permanent as permanent could be, with not single tarp in sight. It was a vast single-storey mud or stone building. Imagine an arched walkway with a hundred little rooms/shops off each side. Join twenty five of these structures side by side and you’ve got what I’m guessing the Grand Bazaar to be like. Of course, I could be completely wrong. I only got to cover ten or fifteen percent of it before I gave it a miss. Do you reckon you could do many more than seven hundred little Turkish shops in one go? Not me. If the truth be known I would’ve been content to stop after just seven.
I wanted to ditch Krzysztof the moment we got there, but I bided my time. It wasn’t too long before something in one of the many leather stalls took his fancy. He stepped in to check it out. The moment he did he was assailed in every language under the sun except Polish by the Turkish stallholder. He was trapped, floundering, and I was off. I dashed away, knocking people right, left and centre in my haste. I dropped to all fours in the crowded thoroughfare and crawled between and around legs of all shapes and sizes. I hid myself under a pile of rugs lying beside the doorway of a carpet shop with large Arabic script above the door, but one by one they flew away - as Arabian carpets do.
I felt so exposed, vulnerable. I continued my desperate flight from the stifling clutches of friendship. I grabbed a black jibib thing from a Moslem women’s clothing stall and an entirely inappropriate yasmuk for some reason, hurling a small fortune in notes at the un-yasmuked owner. With a flash of brilliance I tossed another small fortune high into the air. Pandemonium. Seven hundred people rushed to grab the fluttering notes, blocking the thoroughfare behind me. Moses himself couldn’t have parted that milling sea of humanity, let alone bloody Krzysztof. I put a rabbit warren maze of about three hundred and fifty shops between me and my little roadblock, dragging on my Moslem disguise as I ran. I turned into a silverwares shop, exhausted and struggling for breath under my blackness. I still had the yasmuk in my hand. I examined a silver filigree arm bracelet while I caught my breath. I felt exultant, triumphant. I’d done it. No more Krzysztof.
‘C’est tres jolie. N’est pas, Danny?’ A gentle question about the bracelet from behind me.
I flashbacked about seventeen years. I was nine or ten. I was standing beside Dad in a queue for tickets to the football semi-final at the Melbourne Cricket Ground, the MCG. Real football. Aussie Rules football. Not that Pommy stuff. It was my first footy match and only Dad’s second since before he went off to war another seventeen years earlier. Melbourne and my team Collingwood were doing battle for a place in the preliminary final. Dad didn’t barrack for toffy Melbourne. His team was South Melbourne, but they hadn’t made the finals since Adam wore knickerbockers.
Dad’s dad got crushed to death between two railway carriages in the late nineteen twenties. Dad’s mum had to put him and his two brothers in an orphanage, because there was no way she could support all seven of her children by herself. St Joseph’s Christian brothers orphanage in Geelong. Dad used to say the Christian brothers there were all sadistic bastards the way they used to tie down even the littlest kids and thrash them.
He ran away when he was fourteen. He carried his swag all over the eastern states before he returned home to South Melbourne. South was one of the poorest suburbs in Melbourne during the depression. The footy club didn’t have the money to buy enough really good players for it to be very successful, but local loyalty stillI meant something back then. South Melbourne residents just naturally barracked for their home-suburb club. Dad wouldn’t have been seen dead at a Melbourne match if he was going for his own sake. He was at the MCG that day for me, pure and simple.
Thousands of footy fans were streaming into the MCG like - like - like thousands of footy fans. Ninety five thousand of them. I’d never seen so many people.
‘Christ, Danny.’ exclaimed Dad. ‘If you got lost in all this lot I’d never find you. I want you to stick to me like shit to a blanket.’
‘That’s what you’ve been doing, isn’t it Krzysztof?’ I thought to myself. ‘You’ve been sticking to me like shit to a blanket.’ I came to my senses. ‘Well, good on you, sport.’
All my ill-feeling towards him simply evaporated. I lay the bracelet back where I found it and turned to give him the yasmuk for his wife. But I couldn’t give it to him, could I? After all, it was just a figment of my imagination. That God-awful all-covering black jilib thing was too. We ambled around for a bit longer, both much more at ease and happy now. I eventually found a really nice yasmuk for Mrs Krzysztof. We left the bazaar soon after that and I saw him comfortable on the Orient Express on his way home that night.