He who stops being better stops being good ... Oliver Cromwell.
I mentioned in my last blog three weeks ago that we were in the middle of another heatwave here in Victoria. I was so engrossed in my writing after lunch that day that I didn't realize the house was getting too warm until it was too late. The stroke that caused my mute quadriplegia also clobbered the body temperature control centre in my brain, making me react adversely to hot or cold weather. That hot afternoon I realized I had to drive to the wall and nudge the big switch with my elbow to turn on the air conditioner (A/C). I reached for my wheelchair controls, but my arm muscles had already tightened with the heat. I was trapped at my computer, unable to move my chair to turn the A/C on and get the temperature down.
Just half an hour later I could feel a 'Turn' coming on. Occasionally I have these turns -going pale, sweating profusely, feeling sick, too weak to move, etc. Long ago a doctor told me the name for it and said its not uncommon. I find its brought on be extreme discomfort, or prolonged pain, etc. It passes within the hour.
So I knew I was fast going dead white, I could see my jeans and teeshirt turning dark from sweat, I was repressing the heaving that leads to vomiting and I was slumped in the chair too weak to even lift my head. Dying would have been good right then except that I knew it would pass. I prayed no one would turn up, because they would (understandablly) panic at the awful sight of me and would want to call an ambulance. I was fine again an hour later, except for being wiped out for the rest of the day. Would you believe it - the next day was just as hot and the exact same things happened.
My feet swell in summer from the hotter weather. That heatwave made my right foot swell more than ever. So much so that a small amount of the fluid buildup began to ooze out around one toenail. Whenever Bruno was let off the lead he would make a beeline for that toe and lick it clean. Not a bad thing as we all know dog saliva is good.
A few days later red splothes appeared on my thigh, the next day they had spread right down my leg and covered my now grossly-swollen foot, and the day after that I was in hospital being treated for Cellulitis - an infected and badly-swollen leg and foot. Cellulitis, I was told, is often passed on from animals through an open wound - hmmmmm. I was released from hospital a week later, but I used the fuzzy-head and stomach from the high doses of anti-biotics I was still taking as an excuse to skip another week of this blog. But I'm back now.
... ... ... ... ... ... ... ... ...
1984. Bendigo Home and Hospital for the Aged. Continued ...
For six months it's very doubtful that I ever got a real deep long REM sleep. The bottles of thick and yukky liquid food that drip-fed my nosogastric tube lasted two hours and I was being fed ten bottles a day. I'd often be down at physio, occupational therapy or speech therapy without the drip feed for some of the day and it'd have to go on until well in the night to catch up - even when I was asleep. Every two hours I'd wake for between five and ten minutes because a nurse with a torch would be fiddling about changing the drip-food bottle - occasionally for longer because the tube would block up and she'd spend ages unblocking it with my overhead light turned on.
At different two-hourly intervals the nurses would do their rounds and they'd roll me onto my opposite side to prevent me getting bedsores. The more diligent and less feeling nurses would vigorously rub my behind, thus ensuring good circulation and most especially wakefulness. And then I had the extra problem that only by lying on my back could I get comfortable. After being put on my side I'd sleep no more than a hour before pain and discomfort woke me and prevented me getting back to sleep. No, I didn't get much sleep.
Not long before I left Prince Henry's hospital I began having tentative feelings that I was more in contact with my condition than anyone else did and the move to BHHA cemented these feelings. In fact, in some areas it was an accepted truth. A few senior nurses had seen traches and noso-gastrics many years before, but trache patients were so rare in Bendigo that the vast majority of nurses who were locally trained knew of them in theory only. I think it says a lot about these nurses that they had the commonsense to learn from me - many nurses get to be up themselves because they're Registered Nurses, and as such would rather do a thing wrong than be guided by anyone other than another RN or a doctor.
I recognized at BHHA that five months of intimate experience had made me the most knowledgable person there when it came to traches and nosogastrics and it seemed a fair bet that I'd also be more au fait with my general care too. Nurses are very aware that bedsores can easily appear on a bed-ridden patient who isn't turned regularly, but the two-hourly position changes that were inflicted upon me every night at PHH had been a bane of my life. I'd never had a hint of bodily pressure soreness there and I figured this was mostly because I was lying on sheepskins on a special `anti-pressure sores' air mattress.
When the BHHA nurses came to reposition me in my bed for the first time I decided to test if I really needed this regular turning. I lied that I hadn't ever needed this pressure care and they believed me. (From that night on I've never needed to be turned. I've slept on my back ever since then and we even ditched the air mattress soon after I left hospital.) The only thing that intruded on my sleep was the cursed bottle changes to my nosogastric tube, so I decided it had to go. I was handling oral feeds OK - well - I guess honesty requires that I admit that my meal-times were sheer hell, but I lived through each meal (just) and I figured that to be close enough to OK.
I spelled out that I wanted the nosogastric removed, but the medical staff didn't believe I was ready. At PHH a friend brought me the patients' bill of rights, so I said I'd have legal proceedings started if the nosogastric wasn't taken out. Later that day the doctor told me that I was ready.
‘We'll take it out tomorrow, Danny’.
I'd often had to have blocked tubes replaced at PHH, so I knew that tube removal was merely a matter of pulling its twenty centimetre length from my nose.
‘Uh uh - I want it out now.’
I was beginning to display the pigheadedness that was to make me strive for continued improvement for years to come. I'm still like that. It's a crazy way to be, considering I've been told time and again that I'll never improve significantly. I've made very minor changes happen in me but in terms of energy expended to achieve this it hasn't been all that worthwhile. Had I accepted those expert opinions I'd have given up long ago. That wouldn't have been too terrible a way to live. No more need for a brave front, no need to make myself appear positive and hopeful, no more work work work, no more obligation to try. My family and friends just assume I'll go on fighting because I'm me. If I gave in they'd be disappointed at first, but they'd understand and their pressure would be off. Imagine the waves of relief I'd feel as those pressures were lifted. I could spent a life of physical ease with nurses to tend to my every physical need. Wouldn't life be easy?
I can't give up, though, can I? People see me still fighting the odds and they think I'm brave, wonderful and heroic. Actually I'm none of that. I'm merely acting on my inherited characteristics. Don't praise me for being determined, for never giving up - I was born that way. Don't praise me for fighting the odds - I was born that way. Don't praise me for retaining control of my life - I was born that way. Don't praise me for not taking the easy way out - I was born that way. Besides, as long as I try there's very faint hope, and as long as I have hope life can be fine.
... ... ... ... ... ... ... ... ...
Continued travels. August 1976, Greece.
Would you believe it, I’m back in Greece. All that hassle with Sinister’s secret police and I still didn’t even consider the un-wisdom of coming back. Not that I’ve had any problems. All the young guy at the desk did when I was going through Greek Customs at the border was check my passport on his computer screen and wave me through. Sure, he looked at me hard for just an instant when he looked up from the screen, but considering my wild-looking hairiness -
‘Hitch-hiking?’ he asked pleasantly as I turned to go.
I’m beside the highway that runs all the way through Europe to the English channel on the Belgium coast. Actually, it probably only goes to somewhere like Paris or Amsterdam and roads from there get you to the ferry ports in France and Belgium. I don’t know – exactly. I haven’t got enough brains to plan ahead exactly and read maps exactly. All I care about knowing exactly is where I am at any given time – sort of. The highway doesn’t go through Athens, though. It comes from Istanbul and runs across the top of Greece before turning north into Yugoslavia and the rest of Europe. You have to go south a couple of hundred kilometres to get to Athens.
Last night I lay my sleeping bag out against a half-built wall in a construction site in Alexandropoulos. I was woken this morning by the cheerful voices of labourers pouring concrete just three metres from my head. I stopped for breakfast as I walked out of town then the very first car I thumbed brought me to the village back there. God knows what it’s called. I suppose I could get my map out and look it up, but do I really need to record another odd-sounding name?
I’m sitting in the grass beside the quiet highway tapping on my lightweight typewriter. At first I stood there expectant and eager, but cars are few and far between here. Most of them don’t even spare a second glance for a hippy-looking b like me as they whizz by, so it wasn’t long before I dug a book out of my backpack. I sat down to make a coffee after an hour or so of very little traffic and didn’t get up again. Once I’d had my bread-and-cheese lunch I gave in and pulled the typewriter out. It’s warm, it’s sunny, it’s really pleasant here in the long dry grass and most importantly I’ve got my typewriter on my lap. I don’s mind at all if no-one stops today. I’ll just lose myself in writing until it gets dark then walk back to the village to buy dinner.
It’s the next morning, about eleven o’clock. It’s yet another day of light traffic with no-one even slowing down to give me the once over. I can hear a car, but it’s coming from in front of me. Pity it’s going the wrong way, because it looks like it’d give me a ride. It’s slowing a bit as it passes me. Shit, it’s one of those big black jobs with two black suits in the front seat! It’s doing a U-turn and coming back to me.
‘Mister Furlong?’ One suit is out and ‘helping’ me into the back seat. ‘We will give you a ride to Athens.’
‘Thanks, but I’m on my way to the border. Just drop me where our roads part.’
‘We will take you to Athens. Mr Sinister is waiting for you.’
How did they know? Of course – that young Customs guy. I must have been flagged on his computer.
-
Sinister had come from Chois just for me. It seems we had a lot to talk about. Takes his job seriously, that one. It’s possible I was just a tad terrified at various times during that long night with him, but he knew he was just going through the motions. On the morrow his underlings took me to a travel office and booked me a bus ticket to England. A magic bus leaving the next morning at seven AM. Magic buses are simply cut-price coaches that cater mainly to backpackers. They run almost express to London – with stops for fuel and meals.
I was at the travel place just before seven, along with thirty or forty others – mainly young Germans destined for Munich. Sinister and his heavies were parked across the narrow street. Dead on seven a woman stepped out of the office.
‘The bus will be thirty minutes late.’
Many grumbles around me. Agitation. Me, I sat down on the footpath and cooked eggs on toast for breakfast. I was finishing my coffee when the bus pulled up. Everyone clustered around the door to pile on. Again I was the odd man out, taking my time to pack my gear and go into the office to fill my little billy with water. Why rush, I thought, we’ve all got pre-booked seats. Besides, the driver was still in the travel office. I followed him out to the coach and sure enough there was one vacant seat left near the back.
Sinister got on as the coach was about to pull off, a heavie with him. Plainclothes cops the world over look like plainclothes cops. He said something in Greek to the driver before coming to speak to me in a loud, threatening voice.
‘I told him you are not to get off before the border.’
Is he trying to intimidate me again and tell everyone I’m a bad man to be avoided? Doesn’t he know he’s just increasing my standing with this young crowd?
He left without another word, but then poked his head back inside the door and looked directly at me. He was smiling the first genuine, friendly smile I’ve had from him.
‘I received your postcard.’
I mentioned in my last blog three weeks ago that we were in the middle of another heatwave here in Victoria. I was so engrossed in my writing after lunch that day that I didn't realize the house was getting too warm until it was too late. The stroke that caused my mute quadriplegia also clobbered the body temperature control centre in my brain, making me react adversely to hot or cold weather. That hot afternoon I realized I had to drive to the wall and nudge the big switch with my elbow to turn on the air conditioner (A/C). I reached for my wheelchair controls, but my arm muscles had already tightened with the heat. I was trapped at my computer, unable to move my chair to turn the A/C on and get the temperature down.
Just half an hour later I could feel a 'Turn' coming on. Occasionally I have these turns -going pale, sweating profusely, feeling sick, too weak to move, etc. Long ago a doctor told me the name for it and said its not uncommon. I find its brought on be extreme discomfort, or prolonged pain, etc. It passes within the hour.
So I knew I was fast going dead white, I could see my jeans and teeshirt turning dark from sweat, I was repressing the heaving that leads to vomiting and I was slumped in the chair too weak to even lift my head. Dying would have been good right then except that I knew it would pass. I prayed no one would turn up, because they would (understandablly) panic at the awful sight of me and would want to call an ambulance. I was fine again an hour later, except for being wiped out for the rest of the day. Would you believe it - the next day was just as hot and the exact same things happened.
My feet swell in summer from the hotter weather. That heatwave made my right foot swell more than ever. So much so that a small amount of the fluid buildup began to ooze out around one toenail. Whenever Bruno was let off the lead he would make a beeline for that toe and lick it clean. Not a bad thing as we all know dog saliva is good.
A few days later red splothes appeared on my thigh, the next day they had spread right down my leg and covered my now grossly-swollen foot, and the day after that I was in hospital being treated for Cellulitis - an infected and badly-swollen leg and foot. Cellulitis, I was told, is often passed on from animals through an open wound - hmmmmm. I was released from hospital a week later, but I used the fuzzy-head and stomach from the high doses of anti-biotics I was still taking as an excuse to skip another week of this blog. But I'm back now.
... ... ... ... ... ... ... ... ...
1984. Bendigo Home and Hospital for the Aged. Continued ...
For six months it's very doubtful that I ever got a real deep long REM sleep. The bottles of thick and yukky liquid food that drip-fed my nosogastric tube lasted two hours and I was being fed ten bottles a day. I'd often be down at physio, occupational therapy or speech therapy without the drip feed for some of the day and it'd have to go on until well in the night to catch up - even when I was asleep. Every two hours I'd wake for between five and ten minutes because a nurse with a torch would be fiddling about changing the drip-food bottle - occasionally for longer because the tube would block up and she'd spend ages unblocking it with my overhead light turned on.
At different two-hourly intervals the nurses would do their rounds and they'd roll me onto my opposite side to prevent me getting bedsores. The more diligent and less feeling nurses would vigorously rub my behind, thus ensuring good circulation and most especially wakefulness. And then I had the extra problem that only by lying on my back could I get comfortable. After being put on my side I'd sleep no more than a hour before pain and discomfort woke me and prevented me getting back to sleep. No, I didn't get much sleep.
Not long before I left Prince Henry's hospital I began having tentative feelings that I was more in contact with my condition than anyone else did and the move to BHHA cemented these feelings. In fact, in some areas it was an accepted truth. A few senior nurses had seen traches and noso-gastrics many years before, but trache patients were so rare in Bendigo that the vast majority of nurses who were locally trained knew of them in theory only. I think it says a lot about these nurses that they had the commonsense to learn from me - many nurses get to be up themselves because they're Registered Nurses, and as such would rather do a thing wrong than be guided by anyone other than another RN or a doctor.
I recognized at BHHA that five months of intimate experience had made me the most knowledgable person there when it came to traches and nosogastrics and it seemed a fair bet that I'd also be more au fait with my general care too. Nurses are very aware that bedsores can easily appear on a bed-ridden patient who isn't turned regularly, but the two-hourly position changes that were inflicted upon me every night at PHH had been a bane of my life. I'd never had a hint of bodily pressure soreness there and I figured this was mostly because I was lying on sheepskins on a special `anti-pressure sores' air mattress.
When the BHHA nurses came to reposition me in my bed for the first time I decided to test if I really needed this regular turning. I lied that I hadn't ever needed this pressure care and they believed me. (From that night on I've never needed to be turned. I've slept on my back ever since then and we even ditched the air mattress soon after I left hospital.) The only thing that intruded on my sleep was the cursed bottle changes to my nosogastric tube, so I decided it had to go. I was handling oral feeds OK - well - I guess honesty requires that I admit that my meal-times were sheer hell, but I lived through each meal (just) and I figured that to be close enough to OK.
I spelled out that I wanted the nosogastric removed, but the medical staff didn't believe I was ready. At PHH a friend brought me the patients' bill of rights, so I said I'd have legal proceedings started if the nosogastric wasn't taken out. Later that day the doctor told me that I was ready.
‘We'll take it out tomorrow, Danny’.
I'd often had to have blocked tubes replaced at PHH, so I knew that tube removal was merely a matter of pulling its twenty centimetre length from my nose.
‘Uh uh - I want it out now.’
I was beginning to display the pigheadedness that was to make me strive for continued improvement for years to come. I'm still like that. It's a crazy way to be, considering I've been told time and again that I'll never improve significantly. I've made very minor changes happen in me but in terms of energy expended to achieve this it hasn't been all that worthwhile. Had I accepted those expert opinions I'd have given up long ago. That wouldn't have been too terrible a way to live. No more need for a brave front, no need to make myself appear positive and hopeful, no more work work work, no more obligation to try. My family and friends just assume I'll go on fighting because I'm me. If I gave in they'd be disappointed at first, but they'd understand and their pressure would be off. Imagine the waves of relief I'd feel as those pressures were lifted. I could spent a life of physical ease with nurses to tend to my every physical need. Wouldn't life be easy?
I can't give up, though, can I? People see me still fighting the odds and they think I'm brave, wonderful and heroic. Actually I'm none of that. I'm merely acting on my inherited characteristics. Don't praise me for being determined, for never giving up - I was born that way. Don't praise me for fighting the odds - I was born that way. Don't praise me for retaining control of my life - I was born that way. Don't praise me for not taking the easy way out - I was born that way. Besides, as long as I try there's very faint hope, and as long as I have hope life can be fine.
... ... ... ... ... ... ... ... ...
Continued travels. August 1976, Greece.
Would you believe it, I’m back in Greece. All that hassle with Sinister’s secret police and I still didn’t even consider the un-wisdom of coming back. Not that I’ve had any problems. All the young guy at the desk did when I was going through Greek Customs at the border was check my passport on his computer screen and wave me through. Sure, he looked at me hard for just an instant when he looked up from the screen, but considering my wild-looking hairiness -
‘Hitch-hiking?’ he asked pleasantly as I turned to go.
I’m beside the highway that runs all the way through Europe to the English channel on the Belgium coast. Actually, it probably only goes to somewhere like Paris or Amsterdam and roads from there get you to the ferry ports in France and Belgium. I don’t know – exactly. I haven’t got enough brains to plan ahead exactly and read maps exactly. All I care about knowing exactly is where I am at any given time – sort of. The highway doesn’t go through Athens, though. It comes from Istanbul and runs across the top of Greece before turning north into Yugoslavia and the rest of Europe. You have to go south a couple of hundred kilometres to get to Athens.
Last night I lay my sleeping bag out against a half-built wall in a construction site in Alexandropoulos. I was woken this morning by the cheerful voices of labourers pouring concrete just three metres from my head. I stopped for breakfast as I walked out of town then the very first car I thumbed brought me to the village back there. God knows what it’s called. I suppose I could get my map out and look it up, but do I really need to record another odd-sounding name?
I’m sitting in the grass beside the quiet highway tapping on my lightweight typewriter. At first I stood there expectant and eager, but cars are few and far between here. Most of them don’t even spare a second glance for a hippy-looking b like me as they whizz by, so it wasn’t long before I dug a book out of my backpack. I sat down to make a coffee after an hour or so of very little traffic and didn’t get up again. Once I’d had my bread-and-cheese lunch I gave in and pulled the typewriter out. It’s warm, it’s sunny, it’s really pleasant here in the long dry grass and most importantly I’ve got my typewriter on my lap. I don’s mind at all if no-one stops today. I’ll just lose myself in writing until it gets dark then walk back to the village to buy dinner.
It’s the next morning, about eleven o’clock. It’s yet another day of light traffic with no-one even slowing down to give me the once over. I can hear a car, but it’s coming from in front of me. Pity it’s going the wrong way, because it looks like it’d give me a ride. It’s slowing a bit as it passes me. Shit, it’s one of those big black jobs with two black suits in the front seat! It’s doing a U-turn and coming back to me.
‘Mister Furlong?’ One suit is out and ‘helping’ me into the back seat. ‘We will give you a ride to Athens.’
‘Thanks, but I’m on my way to the border. Just drop me where our roads part.’
‘We will take you to Athens. Mr Sinister is waiting for you.’
How did they know? Of course – that young Customs guy. I must have been flagged on his computer.
-
Sinister had come from Chois just for me. It seems we had a lot to talk about. Takes his job seriously, that one. It’s possible I was just a tad terrified at various times during that long night with him, but he knew he was just going through the motions. On the morrow his underlings took me to a travel office and booked me a bus ticket to England. A magic bus leaving the next morning at seven AM. Magic buses are simply cut-price coaches that cater mainly to backpackers. They run almost express to London – with stops for fuel and meals.
I was at the travel place just before seven, along with thirty or forty others – mainly young Germans destined for Munich. Sinister and his heavies were parked across the narrow street. Dead on seven a woman stepped out of the office.
‘The bus will be thirty minutes late.’
Many grumbles around me. Agitation. Me, I sat down on the footpath and cooked eggs on toast for breakfast. I was finishing my coffee when the bus pulled up. Everyone clustered around the door to pile on. Again I was the odd man out, taking my time to pack my gear and go into the office to fill my little billy with water. Why rush, I thought, we’ve all got pre-booked seats. Besides, the driver was still in the travel office. I followed him out to the coach and sure enough there was one vacant seat left near the back.
Sinister got on as the coach was about to pull off, a heavie with him. Plainclothes cops the world over look like plainclothes cops. He said something in Greek to the driver before coming to speak to me in a loud, threatening voice.
‘I told him you are not to get off before the border.’
Is he trying to intimidate me again and tell everyone I’m a bad man to be avoided? Doesn’t he know he’s just increasing my standing with this young crowd?
He left without another word, but then poked his head back inside the door and looked directly at me. He was smiling the first genuine, friendly smile I’ve had from him.
‘I received your postcard.’
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