A friend from down the coast at Anglesea came to visit yesterday. She was a carer of mine over twenty years ago when I lived there in a tiny Housing Department unit. We became firm friends and now that I live in Castlemaine she makes the 170km trip to see me a couple of times a year.
She is now fixing up an old cafe down that way, hoping to open before Christmas. On the Friday of the week before last she had an electrician check out the building's electrical wiring. The electrician, Mark, a competent confident but gentle likeable guy, started the job that very day, but he rang on Monday to say he couldn't finish it - there'd been a death in the family.
"I'm sorry, Mark."
"I'm OK - it was a beautiful death. I'll send Jane to finish the job."
Jane turns up the next day driving a Porshe. She looks exactly like Mark, she talks exactly like him, and she's dressed exactly like him - this isn't amazing, because she IS him! But 'she's' very under-confident and she's a lousy electrician. In fact my friend has to hire another electrician to take over. She explained to the new electrician why the job's half done. "Oh, I get a few jobs like this every time Mark dies" he replied. "It's a phase he's going through for ten years now."
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One normal, demanding day last year I coined the phrase 'The decline of Danny' and thought of all that it encompassed. I think it's time I put it down on paper, as it were, but I'm pretty sure I won't make a full list. That'd be too depressing and depression just isn't me. In a situation like mine shallow and superficial is the easiest way to get through life.
Immediately after my stroke I was a vegie movement-wise and even after the next year in hospital close-to-normal head movement and about ten percent left arm/hand movement were my only claims to fame (bonking excluded). I could feed myself with a spoon and type about five words per minute, but only with the aid of a Spring-and-Strap thing. A long spring hung from the ceiling with a strap at the bottom that went around my elbow. The spring lifted and supported my elbow, allowing my hand to reach my mouth and allowing me to swing my arm from one side of a small keyboard to the other.
After six or eight months of feeding myself and typing my arm movement had improved to maybe twenty percent, so I ditched the spring thing. That dropped my typing speed back from the improved 10 wpm to the old 5 wpm again, but another year of near-constant typing saw me back to 10 wpm. A year later I was churning out poems and stories at around 15 wpm! I didn't improve beyond that.
I coasted along at that level until the Decline began about five years later. That decline in my movement has been going on for twenty years now. It's been almost imperceptable to the outside observer, but here on the inside I've had to make very regular adjustments to the way I do things.
During those first few years I typed by prodding the keys with the tip of my index finger. I date the start of the Decline from the time that finger tightened so much that I could no longing prod with it. I moved on to my second finger, but in time it tightened too. Third finger, little finger, then finally the knuckle of that tightened little finger.
I went along typing with that knuckle for many a year, because once my fingers had tightened so much that they were clenched into a fist they couldn't get any worse. But I then started losing arm movement. I had always needed a small keyboard, not as wide as a laptop computer keyboard, but now I was having extreme difficulty reaching the keys near the the right hand side of it.
Within months I had to cease my own writing's typing completely. The only things I could produce were my daily lists of tasks for my carers and some very short emails. I would type all the words and letters I could reach then I'd move my wheelchair to the right and go through typing in all the letters I'd missed.
Around that time I was getting very skinny and rundown, catching the flu and gastro at the drop of a hat. Jez and her mum Esther were still living with me at the time. Esther became so concerned she went to my doctor. Oh boy, did he rise to the occasion - he reminded her that I'd already lived a couple of decades longer that was expected, so she should see any extra time that I was alive now as a bonus.
Concurrent with the decline in my arm movement for typing had been increased difficulty feeding myself. At most every meal Esther and Jez would be finished before I was a quarter of the way through. Esther would sit with me, politely, but I'd give up on the meal soon after. Eating was no fun when it was so bloody hard. Eventually I capitulated and began getting my carers to feed me. Lo and behold, I began putting on weight and became healthy again. I hadn't been dying my inevitable locked-in syndrome death as the doctor suggested. I had been ailing from eating too little.
As luck would have it the region's chief speech official called on me around that time to ask me to join a regional communications advisory panel. She saw my typing plight and came back a couple of weeks later with the no-hands laser-operated keyboard I'm using today. My arms are still getting tighter and less usable but I'm safe for typing at least.
All that moaning has been a lead-up to the following delicate issue -
I only know two other quads - one actually, now that Aldrick isn't around any more, and just two paras. (Aldrick is the ill-mannered quad from my last post.) From what I gleaned from them early on it appears that most of us suffer from frequent urinary tract infections and many of us wear urine leg bags. Both quads had one or two week-long stays in hospital every year to sort out UTIs and saw these stays as part and parcel of being a quad.
In my naive way I thought that keeping the kidneys flushed with plenty of liquid and having a relatively fit and healthy body might ward off urinary infections. With that in mind I've always drunk a lot of liquid, not alcoholic, and for the first twenty years of quadriplegia did a lot of exercise bike work. This seems to have worked, because I've only had two UTIs in my thirty years.
I drink plenty so that I pee plenty, which helps me avoid UTIs, but peeing is one of the major problems I have have to deal with nowadays.
The zips on the fly of pants are next to impossible for a quad, so from day one I've always had them replaced with velcro. I could work my bent fingers between the velcro and get the fly open. For the first twenty years I could inch my hand out sideways just beyond the armrest of the wheelchair and hook a finger around the handle of a hospital urinal bottle. I would then heave it onto my lap and work it down between my legs to have a pee. The more arm movement I lost the more difficult this already-difficult procedure became, so I devised an alternative. And that alternative is part of the major problem that I have.
This setup is what I've named as my pee pipe. It's just a length of PVC pipe with one end over the toilet bowl. I drive up to the other end and pee into it.
Because of the extent of the Decline of Danny I no longer have any usable fingers. All I've got is a fist. That makes the peeing routine very difficult.
I work away at my velcro fly with my thumb knuckle and then somehow grip my penis or just the skin of it between my thumb knuckle and the side of my index finger to get it out and into the pipe.
This now takes me around twenty minutes. Actual peeing takes just ten to twenty seconds, then getting my fly shut and my clothes presentable uses up another ten minutes. Thirty minutes for a twenty second pee, and because I drink a lot at breakfast I can need to pee three times before lunch, sometimes four.
There's only four hours from breakfast shift to lunch shift and up to half that time I'm in the toilet. To me that's a big problem in my life.
Still, I wouldn't trade home for a nursing home or supported quad accommodation. I'm happy here.
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Ellydd gate is just the first of the three books that make up the Drinsighe story. Often Gemma suggests a change in Ellydd gate that has ramifications in one or both of the subsequent books, so after making the change in Ellydd gate I have to find the appropriate places in the other books and modify them to suit. Similarly when she makes a correction in Ellydd gate I sometimes have to make the same correction throughout the other books.
The capitalization is like that. It'll take hours because I'll have to attend to it three times over.
Before I go ... Gemma is a very good writer herself. Of course she is, Danny. She wouldn't have done a university degree in writing if she couldn't write. At present she is writing a noir crime novel. One of my carers had her first novel published early this year, is currently editing her second, and is contracted by her publisher to write her third. She too is a crime writer. I could ask them both to write something about their writing for this blog if some of you kind readers are interested. What do you reckon? Let me know.
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June 10, 1984 - Prince Henry's Hospital. Melbourne
It’s six days after the flagpole incident. You can imagine how fast it spread amongst the nursing staff. What with ‘Danny's just cracked a boner’ reverberating around the ward they sent a forty five year old battleaxe to wash me the next day. I reckon if it’d raised its head she would've chopped it off.
In a way the flagpole was pertinent info about my quad state for the doctors, especially since no one here has encountered my condition before. Not a lot of doctors anywhere ever see locked-in syndrome. It’s quite uncommon and most people don't survive it for very long. So why am I still around, you ask? Just lucky, I guess.
‘The patient is a non-verbal quadriplegic; he suffers from locked-in syndrome caused by a pontial infarction.’
I'm a mute quad as the result of a dead spot in my brain stem. I had a bobby-dazzler of a stroke for no known reason and it zapped a section of the motor nerves there. My brain functions normally (???), but the messages it sends to my muscles can't get past the dead spot - they're locked in my brain. I was locked-in in a higher sense too, because I had no means to communicate my thoughts, but now I've got the Etran board - it's painfully slow, but it's much better than nothing.
The flagpole incident seems a bit of a laugh, but I’m beginning to see that it was more than that. I was having a terrible time. I thought my life was as good as over for all intents and purposes. I was going to have to spend the whole second half of it lying inert and invalid - in-valid. Now I’ve started thinking I do have a future, that I haven’t hit a wall that I won’t get past.
Last week I woke up with an erection. So what, you ask? It happens to men everywhere all the time. It’d happened to me in hospital before last week and it’s happened to me since then too. The morning tent pole is so natural I didn’t even consider its implications, but the public exposure caused by the flagpole incident has made me think again.
The male charge nurse came to see me just two hours after poor Perky’s pillagings. He got straight to the point, as it were.
‘I hear you’re getting a bit randy, Danny. How long have you been here now? Three months? Four? I don’t blame you after all that time. I don’t blame you, but - you know, my student nurses. I think it’s time you put the hard word on Rainbow. Tell her to just pull the curtains round your bed and we’ll give you as much privacy as you want.’
I’ve been thinking about things a bit different since then. I can get it up and I still have feeling all over my body, which means I can do it! I can communicate with the alphabet board and I can still do it. Put those two things together and you’ve got the makings of a life. It wouldn’t be much of a life, but it’s a lot more than I thought I had.
Last week while I was using the Etran board I lifted my head off the pillow for the first time. The physio was over the moon about it, but I didn’t even notice it. Apparently it was about a one centimetre lift. Greeeeat, I thought. Now I’ll go through life able to twitch my thumb and raise my head one bloody centimetre!
I didn’t think I could do anything that amounted to anything, but now I can see I’ve got something going for me. Just having something gives me hope. Thumb twitching and head lifting aren’t much, but - but now that there’s hope - I can work on them.
Yesterday the physio said that at last I’m trying. She reckons I’ve got this powerful need to live lying deep within me. I don’t know about that, but - powerful need to live lying deep within. That’s a good turn of phrase, isn’t it?
September 20, 1971 - Castlemaine, Victoria
It’s the spring equinox. We’re going to the Spring ball in the historic old market building in country Castlemaine. We’re going in style, dressed up to the nines. Rick and Chris are in the spiffy-looking sulky up front, Innocent and Norma back here in the other one.
Last year Rick and I slaved like buggery restoring old horse-drawn vehicles – a dozen two-wheeled sulkies, a couple of four-wheeled buggies, an Irish jogging cart and an enormous hay wagon. Then we sold them at auction. It went so well we came close to recouping all our expenses. Close, but not quite. We didn’t make anything from the auction to pay for our six months of labour, though. Ah, well - these things happen.
We drove the hundred or so kilometres from Melbourne to Castlemaine this afternoon and gathered at Rick’s house for a quiet beer and an evening meal before heading off to the ball together. Rick and Chris and Rick’s mate Denis. Denis is your typical gentle giant. Innocent and me with our friends Robin and Norma.
Dress for dinner. Champagne toast to king and empire and all that. Red wine with the roast. Port on the veranda. And off we go. Down the hill from Wheeler Street, under the railway bridge, up Barker Street and right into Mostyn Street with Rick’s sulky about five horse lengths in front. Not far to go now. I can see the Market building all lit up ahead of us on the right.
Damn! A cop car is crawling along beside us, one cop driving and another sitting beside him. The second cop is a mean-looking bastard. He winds down his window, all the better to check us out.
‘Can’t they leave us alone?’ I hear Innocent hiss quietly. ‘We’re not doing any harm.’
Whew, they’re moving off. They’re moving off because we’re not doing anything wrong. Just clip clopping to the spring ball.
Actually, there is no clip clopping - except in my imagination. No clip clop because the horses don’t have horseshoes on their hooves. And that’s because there’s no horses. Just massive Denis between the shafts of the sulky Rick and Chris are in, and me and Robin pulling the sulky with our two wives in it.
Hang on, the cop car is braking beside the other sulky
‘Whooooooa.’ Rick pulls back on his non-existent reins. ‘Steady, boy. Steeeeaaaady.’
The mean cop stares bullets at Denis for an eternity, letting him know he wouldn’t even piss on him if he was on fire. This little display of hard-line coppering is giving us time to catch up.
‘What do you think you’re playing at?’ the cop is asking Denis.
‘Don’t ask me. I’m just the horse.’
The humour doesn’t register with the cop. He turns his impassive head and growls the same question up at Rick holding the reins.