Just a few minutes ago an elderly-sounding lady rang my number, heard 'This is Danny Furlong's phone. Please leave a message.' and actually apologised for ringing the wrong number! I must have received over fifty wrong number calls this year but this was the very first one where the caller showed any manners by saying sorry. I'm old enough to remember when manners were the norm.
That paragraph wasn't just a random rant. I'll tie it in to today's ramble a bit further down.
Early on in my quad career I underwent a fairly intensive exercise and cross-patterning program for about a year. It involved 3-hour or 4-hour sessions twice a day seven days a week, requiring around 100 volunteer helpers in that week. A national TV current affairs program did a segment on me/us. A guy called Aldrick saw the program and contacted me, as he too had locked-in syndrome courtesey of a stroke and was virtually my double - a mute quad with minimal movement in his left arm only.
We corresponded on and off for the next ten years, then he and his wife came to stay with me for a few days. In his letters he seemed quite OK, but in person he was a long way from being someone I was gaa-gaa about. I, secure in my comfortable life, thought he was a whinger and that he had the wrong attitude to his disability - he believed it entitled him to special treatment; that he could DEMAND disabled services and equipment as his God-given right.
He saw that I was well-treated by disability equipment funding bodies and lamented that he had to battle hard for everything, sometimes even having to pay for expensive equipment himself. Why, he asked? I couldn't tell him he was missing out because he was an arsehole, which he was. Instead I talked about the desirability of being polite and friendly to the people who worked in those areas, to people generally in fact, and to always use your manners, just like that lady on the phone earlier today.
Today has been a noteworthy day for me, because before I'd even had breakfast my local wheelchair man delivered my new wheelchair. A&EP, the government aids and equipment funding program, has a limit of $7,500 for wheelchairs, but that's only enough for very basic chairs. Many people need a chair that's more robust or that has costly modifications to cater to their particular disabilities. It's amazing how the overall price skyrockets if modifications are needed.
My new chair was quoted at $16,000. I anticipated that I'd probably have to settle for a lesser chair and that I'd have a long wait while my case manager found even part of the extra funding required. However she told me 'Don't bother with all the goings-on needed to get the first $7,500 from A&EP. You know how I got you a place on the EACH program when you turned 65 last year - even though you didn't want it? Well, it's the end of the financial year. EACH still has money left over, so I'll use it to pay for your chair in the one lump sum.'
Aldrick, already a quad in a wheelchair when we met, got cleaned up by a truck a couple of years ago, but if he was still around he'd be baffled at the ease with which my chair was funded. It's always been that way for me. Over the years I've received a new computer supposedly to enhance my communication, an expensive portable communicator, my present laser-operated keyboard, a purpose-built new house and much more. I didn't even request some of these things. They just arrived unannounced because people in A&EP knew and liked me and knew I could do with them.
Sure, the people who control the distribution of disabled equipment, and public housing even, look on me more favorably because I'm apparently in a terrible situation/condition being a mute quad, but moreso because I'm friendly, polite and not demanding. Ah, Aldrick!
Oh dear, oh dear, I'm getting old. Fifteen years ago I thought nothing of staying up in my wheelchair all night so I could get more writing done. Go back twenty years and I was staying up writing one or two nights every week. It's a different story now. Last week I told you I got Ellydd Gate back from my editor and had been through the first 60 pages. It's not easy finding time to work on it, so I stayed up on Tuesday night. I got through to page 200, but boy oh boy was I wrecked the next day. I won't be doing that again in a hurry.
Did I mention that my editor is also my daughter, Gemma? She is the digital rights manager (online publishing) for a Melbourne publisher. She does some editing for them and freelance editing too. It's a big ask, her editing my books - I mean, having to tell you dad over and over again what he's doing wrong and how to do it better?
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May 18, 1984 - Prince Henry's Hospital, Melbourne
It's nighttime, about eleven o'clock I'd say. I can't get to sleep. So what else is new? I do virtually nothing now except lie in bed all the time, so I’m never the slightest bit tired.
When I was at high school there was a guy called Robin in the next class. I knew him to say hello to, but that's about all. Once I began work in the city I'd often see him in the crowd waiting for the train home from Flinders St Station. I admired him from afar, because he was everything I and every teenage boy wanted to be when it got down to the things which really mattered. He was handsome, likeable, outgoing, self-confident, and, most importantly, he had girls crawling all over him. I approached him and we soon became good friends. Initially I was hoping some of him would rub off on me, but the more I got to know him the more I wanted to be mates simply because I liked him.
We saw a fair bit of each other until my early midlife crisis at twenty-seven. I got divorced from Innocent then I went back to Uni to study psychology then I went on the dole and moved the country. Robin was working about nine hundred hours every week becoming a successful estate agent and I was fast going feral. We visited each other for a few hours every couple of years, but within days of Thor clobbering me with a lightning bolt Robin was at my bedside.
From that time on he visited me at least once a week throughout my long hospitalization (to the delight and terror of every female nurse on the ward). Last week he fashioned me a crude spelling board that I could use by choosing letters with my eyes. It was dreadfully slow, but at least it allowed me to contact the world outside my head. It only lasted two days though. On Sunday a nurse took it to be rubbish and threw it out. I had to lie there as my new lifeboat was cast adrift. I couldn't speak to shout ‘STOP’, I couldn't move to retrieve it and I couldn't use it to spell `Don't throw this away' because it was already gone.
May 25, 1984 - PHH, Melbourne
Speechy's padding in softly on her soft rubber soles, and her smile's reaching me before she's halfway here.
‘Hello, Speechy! What's up?’ I'm thinking at her, because I can see she's quietly excited, the bearer of good news. She shows me a perspex board-thing with the alphabet on it.
‘This'll definitely be your saviour. You can get out of your head at last. As long as you're trapped in there being unable to communicate-’
This is what I'm hearing, even though it's not her exact words. I'm having deja vu of the infamous morse code affair, because she's acting just like then and she's saying the same sort of stuff
‘- people will keep thinking you can't think. Even if they know better, even if they know you're not loopy, they'll still have doubts at times. It's only natural for them to be like that, but this'll make them know you're OK. I hunted around for something after I saw the one your friend made and this was in a catalogue. It's called an Etran board and it only cost twenty-five dollars. It's got the whole alphabet and the letters are grouped-’
It's a thirty centimetre square of clear perspex with letters in groups of four on it. The `user' (he or she) holds it between him and the Me, and the Me gazes at one group. The user watches where I look then he says each letter in that group. I answer yes or no, eyes up or eyes down, until we get the right letter then we work on through my sentence.)
‘Look out world im back’
There's no punctuation marks or stuff like that. It's bloody slow, but Speechy says it'll be faster when I've learnt where the letters are, just like with a typewriter.
June 4, 1984 - Prince Henry's Hospital, Melbourne
I’ve been here in hospital for about four months. My fuzzed-up head didn’t get to be crystal clear until about a month after I left ICU with its morphine drip. Only then did the appalling horribleness of my situation start to sink in. Everyone else knew it from the very start. They all look so serious when they visit me. Some visitors say stuff like ‘I hope you don’t have any silly thoughts about not wanting to live’, but their eyes are saying ‘God, you’d be better off dead.’
Mum has got really thin and worried-looking. Rainbow’s not much better. They must think it too at times, but they cover it up in front of me.
You’re all saying Better off dead. Better off dead, but eyen if I wanted to how does a quadriplegic kill himself? Hold his breath and count to five hundred?
When my head was still fuzzed up with the after-effects of the morphine I had the vague idea of ‘when I’m better again’. The gradual return of clarity brought with it a gradual recognition of realities. I see my options closing off one by one.
Night after night I lie in the dark sobbing huge sobs and feeling so incredibly sorry for myself. Negative thoughts flourish and multiply in the darkness. They take possession of my head in the darkness. There's twenty or thirty long years stretched out in front of me - thirty years of nothingness - dependence - I’m useless - worthless - a complete waste of space - I’m just a pathetic dependant mute quadriplegic
I lie there crying my heart out and they show me the four thousand seven hundred and thirty four different reasons why my life is going to be one long, bleak nightmare from now on.
A few weeks ago the speech therapist located an alphabet board thing for me. It let’s me spell out things, but it’s painfully slow. Speechy says I’ll get faster with practice, but I don’t think I want to get faster. I mean, what’s the use?
Last week they noticed I’ve got this tiny movement in my right thumb, so they rigged up a light touch button on the buzzer. They tape it into my hand every night so I can call the nurse when I need to pee. Every day nurses wash me and feed me. Every second day they stick an enema up my bum to make me shit. Anytime I want I can buzz for a pee. Why do I need to talk at all, let alone try to get faster at it? It’s not as if I’ll ever be doing anything worth talking about.
For all those long years until I die I won’t have a life. I’ll just have an existence.
After all that carry-on about my terrible nights I’ve got to admit that last night was fine. I slept right through. But it's ten past seven in the morning now and I'm running out of time.
Every morning after I’ve had an OK night I lie and think it away - that upstanding morning thing men get. I’ve noticed that I don’t wake up with it after those nightmarish nights I’ve just been talking about. I drop back to sleep around four or five on those nights, but I guess my sub-conscious is still too churned up between then and morning.
I have to think it away before a nurse comes to wash me. Away! Away! It's a training hospital here, so most of the nurses are spunky young trainees. They're too young to just accept it for the natural morning occurrence it is.
It isn't easy getting rid of it, I tell you. The trick's to keep your mind off it and off anything even remotely to do with sex - like Rainbow and spunky student nurses, in fact any nurses, any women. Today I'm not doing too well. I've still got a tent pole between my legs and here comes the nurse with water and towels.
My God, she's a new student, only been here two weeks, AND she's so - so - so perky. You know the sort , seventeen years old and pretty and a cute little face and a cute little figure and a short uniform and - and - ah, hell! Why isn't it ever this big when I want it to be? What chance it'll flag now?
Perky hasn't washed me before, but has helped make my bed. I heard her telling the other nurses she's into massage and tactile therapy and stuff and that she reckons patients would benefit from it. Like when she does washes, she said, she tries to just use her hands rather than washing with a face washer - sort of a brief massage to relax patients. I've had a few nurses wash me like that and it is better, not like the mechanical, paint-by-numbers routine most efficient nurses get down pat.
She'll see the tent, has to - no, wait, I've been reprieved for a bit. She just chucked the second towel down that way without even looking and it's all bunched up, obscuring it. Oh, happy days.
Nurses are trained to start with the face and work down, so I've got maybe four minutes grace. That should be enough time for it to fade, except now I'm panicking about it. It's all I can think about and it won't go away like that.
Concentrate now, boy. Get your mind off it. Concentrate on not concentrating on it. She uses the face washer on my face and not just her hands, naturally.
‘Gee, it's going to be a nice day, Danny - the rain's all gone.’
Think about rain. Think about sleet. Think about the worst winter in all creation. Think about boat-building in the worst winter in all creation. Think about anything at all, because it's working – your tent pole's beginning to droop.
She pulls the sheet back a bit and soaps up her hands. Long deep strokes with her palms and fingers all over my bare chest.
‘Don't you just love this? I do - er - I mean rubbing warm soapy water on my fron - on my skin.’
Mmmm - that'd be nice, soaping up Perky's pair of pearish - boing!
God! Think about boat-building. Think about animals two by two into that boat at Mt Ararat. Think about anything at all, because it's working - the tent's caving in again.
She moves on to my left arm after covering my washed and dried chest with a towel.
‘Your arms are all skin and bone now. I was told the muscles just dropped off them since your stroke. You need a lot of exercise.’
She lathers my arm, my armpit, and begins a two-handed pull from elbow to shoulder.
‘I like pulling-’
Boing! God, not again.
‘`Er - I mean - I like pulling up your soapy arm like this.’
Think about Mt Ararat. Think about Ararat. Think about Stawell, it's near Ararat. Think about running at the Stawell Gift. Think about anything at all, because it's working - the sheet's nearly flat again.
She finishes my left arm and my right without another word. Here comes the big test, but it feels OK to me. (I can't move and I can't talk, but, unlike many paras and quads, I still have full body sensation - meaning I can feel any touch anywhere and that I'm aware of what my body parts are doing just like normal people.) Dad used to tell me, with what I suspect was understatement, that even though his donk didn't look like much `it rises to the occasion OK'. Like father, like son, but right now I think it's midway between its normal states.
Perky's telling me about Acupressure - how it's like Acupuncture but not the same and how she can get a friend to do it on me if I want. Her mind's not on her job. She wets my rude bits with the washer and she soaps up her hands while she prattles on, then blithely, unthinkingly, she plunges them in between my legs and - Boing! Tent pole, be buggered! It's a flagpole now!
Why isn't it ever this big when I want it to be???