Tuesday, 25 September 2012
Poetry Lucky Butterfly & Too Late for me
Some Poetry to browse 1...just for fun
2...about drugs
Comments welcome
1
(Styled after a Pantoum)
LUCKY BUTTERFLY
She’s lucky she’s a butterfly flutt’ring gently by the hours
Wafting on the balmy breeze, kissing pretty flowers
Landing on the softest blooms drinking nectar from their lips
She’d inhale the gentlest perfume with a touch upon their tips
Wafting on the balmy breeze, kissing pretty flowers
Must be a charming job to do. in and out of bowers,
She’d inhale the gentlest perfume with a touch upon their tips
As she drinks her butterfly nectar in delicate little sips.
Must be a charming job to do...in and out of bowers,
She’d get to see the gardens, sweet peas in pretty towers
As she drinks her butterfly nectar in delicate little sips,
Then lifting off to catch a breeze, up and down she dips.
She’d get to see the gardens, sweet peas in pretty towers,
I wonder if she gets her strength from caterpillar’s powers?
Then lifting off to catch a breeze up and down she dips,
Bold butterfly with paper wings seeks out the dewdrop’s drips
2
(Echo Continuo)
TOO LATE FOR ME
It's mish and mash, I'm smoking hash
I'm smoking hash, did I say that?
I did say that! No myth this mash,
I myth this mash when I smoke hash.
My brain's now free from smoke and pain,
and pain from smoke has tamed my brain,
has tamed my brain like ringing bell
like ringing bell in this damn cell
They won't believe it's just my dream,
my dream where I can see them cry,
I see them cry, they ask me, "Why?"
They ask me, "Why, you know you'll die!"
"You know you'll die!" Is that my mum?
my mum who cries aloud, "Don't die!"
"Don't die my son!" she cries, "Oh why?"
Oh Why, can I but sigh... Long sigh.
Chapter 49 Rampant Philosophy
Life’s Journey
A long time ago I looked up at the sky,
‘What will it be like in 2000?’ asked I.
But I was at school then...had never a care,
Too far away to be worried, I declare
Mum and Dad do the worrying, I’ll never get old,
It’s so far away...too young to be told.
I’ll be a kid for such a long while;
I wish I’d grow up in a bit faster style.
Well Holy Toledo! Did I ask for fast?
I thought my young life a mite longer would last!
2000 has come and also has gone,
I think I just missed it, though my memory’s not long!
Well I guess there’s some glory just being here today;
It’s not quite so easy being happy and gay.
The 20th-century is now in the past,
I’ve survived Y2K bugs and La Nina’s blast.
by Giddy
Chapter 49 Rampant Philosophy
Like a large part of society today, I find many modern practices distasteful. Good manners used to be strictly enforced in the home, and emphasized at school. Fighting at school meant discipline, albeit sometimes too harshly with the cane. We were made to feel shame for bad behaviour. Teachers were especially strict about home work; and good class work was rewarded with a merit stamp, or by holding up for inspection by the class. There were no other incentives, like pretty stickers, colourful dangling mobiles, or other distractions.
Just as now, teachers became very stressed, and I saw teachers use the cane out of frustration with the students work ability, rather than for punishment. That was wrong. But no discipline at all, or no boundaries for children, is unfair as it gives them no guidelines to behave by. I remember the teacher inspecting our necks and fingernails because he thought some of us hadn't washed properly, and the class being questioned as to whether or not we knew the right way to clean our teeth.
“Everybody, repeat the vowels out loud with your mouths open wide...aa...ee...ii...oo...uu.” Good speech was also important, and anybody saying ‘yous’ instead of you, was quickly admonished!
Neither teachers or pupils had the luxury of student-free days. By the time we left school we all had a good working knowledge of how to behave in society. No one is taking responsibility for this now, which is why young teenagers are running rampant on the streets searching for a reason to stop. They can’t find the boundaries. One of the most important things we learned during our education was respect...respect for elders, respect for teachers and leaders, and particularly respect for parents. Importantly, we had self respect and respect for our friends, because we knew that bad behaviour reflected on ourselves. Today I do have sympathy for most parents as they receive many mixed messages. The state is keen to give independence to the teenager, offering money in all sorts of guises. but they are taking no responsibility when things go wrong, and are quick to blame the parents when a crime is committed.
During family history research we found out that one of Pete's great uncles left an orphanage at the age of 12 to work on a farm. Later he joined the Army and during the second World War sent his sister a postcard from London. We admire the beautiful cursive script on the back of the card, and the simple, sincere message is a joy t0 read. It breaks my heart to hear that children can come through school these days and not be able to read or write.
In the same way it disturbs me that people of other nationalities are keen to migrate to this country, but not assimilate. To retain your ethnic origin is admirable, but the old saying 'together we stand, divided we fall' is very true. Creating little enclaves that cannot even communicate with other communities is fraught with danger. Maybe this is even the first step on the way to civil war. It is especially serious when people of a particular religious following are so fanatical in their beliefs that they want everybody to believe the same way. Do they trust their God? Our Christian God has given us the 10 Commandments, and whether we believe in God or not, what a tragedy that we are not obeying those Commandments. All the rules for a peaceful society are there; and we ignore them to our peril!
Changing our flag will not change our history; but at present we have two flags and having two flags is divisive. Instead, in my opinion, we should honour our aboriginal population by combining the flags and substituting the union Jack with their flag. It would be very colourful and look very attractive with the aboriginal flag in the corner and the blue sky and the Southern Cross holding us all together, (or use both.) They were here first. They deserve that recognition. After that we should move forward as a combined people and try to put behind us what went on in the past. The past is what it is, and no one can change that. Rehashing the past is holding us all back. It is a nonsense to judge people for what happened in past history. We need to acknowledge it and move on. I hope and pray that blacks and whites lift themselves above racism in the near future.
The recent philosophy for the care of babies has been to let them make up their own minds. How ridiculous! How distressing for a baby to be left unguided. How frustrating not to be able to cry, to express feelings in the only way a baby knows. How weakening to never discover independence, not learn the ability to go to sleep alone, or to do a painting, sing a song, and know that our best is good enough for those we love.
All people--all children--have strengths and weaknesses, and we must encourage our young people to make the most of their strengths, and to recognize that their weaknesses are unimportant, because they ALL are precious and valuable. Allowed to go unchecked, what we end up with is the ‘tail wagging the dog,’ or ‘the fox in charge of the hen house.’
Survival and coping are things we are not good at teaching our young people. Schools could teach more about surviving the marketing aimed at us all, but particularly at children.
Having M.S. has taught me patience. When I was still struggling to walk with the walker I found that if I could move forward at all, (even a few inches), at least I was making progress. It's the old story of the hare and the tortoise. Little by little you can often win the race, it just takes determination. What distresses me most, is that Peter has had to suffer along with me, especially during falls as my condition deteriorated. He has been, and still is, my rock, my dearest love, and irreproachable for his stoic dedication and kindness.
Every experience teaches us something. I learned that from Mum. "Even if it upsets you at the time, you can always learn something from every experience." I heard that many times. I also learned from her to have a positive attitude.
One day I called her by phone, as I do often because she doesn’t live in Brisbane. “How are you, Mum?”
"Oh, I'm all right..... but I have this pain in my shoulder which gets me down. But I shouldn’t complain. I should just be grateful that I'm alive to feel the pain!”
Never underestimate the value of family. You might not always get on with them, but your family will be around for the long haul. Someone who refuses to commit to you is unlikely to be around when you need them most. Also, remember in-laws are family too, and deserve your patience and understanding. (And sometimes great tolerance!) In any case it is worth remembering that you are an in-law to them.
Unfortunately with a disease like M.S., a person can feel trapped. There are times when I feel desperate for somebody to talk to about death. But who should that be? I can't talk to Peter. I can't talk to my mother. I can't talk to my children. They are all too precious to me to upset in that way. You can't just ring up and ask for a counsellor every five minutes. The Community-health Social Worker counselled me on the phone, but you need that sort of reassurance every day. I would be comforted if I knew that death was going to come suddenly. But that’s unlikely. So I carry on, smiling in the face of adversity. (Fake it till you make it!) I tried to talk to the Blue Care Minister about death, and he told me to discuss it with Peter!
In November of 2008 I read a book about Joe Louis, the American boxer of the 1950s and 60s, written by his son. This is a quote from near the end of the book, taken from the eulogy delivered by the Reverend Jesse Louis Jackson:
It (death) has scouts running around, advertising its arrival: grey hairs, bald spots, arthritis etc. So many of our geniuses have their sun eclipse at noon; Chopin at 39 died of typhoid fever, Mozart died at 36 of disease of the kidney, Mendelssohn at 38, Schubert at 31, Bellini at 34, Dr King and Malcolm at 39, Jesus the Christ and Donny Hathaway at 33. But God smiled on Joe. He experienced the sunset of life......
After reading that, I try to think of my life as a joyful celebration. I am grateful that I have lived to the age of 67. I have learnt much, because of the M.S. and in spite of the M.S. I am happy with the years that I have had so far. I don't particularly want any more, knowing the hardships I will probably experience and cause for everyone else.
In February 2009, we saw the terrible devastation of the fires in Victoria which killed nearly 200 people, shocking not only Australia, but the rest of the world. We knew our own lives were relatively untouched by comparison. We were taken out of ourselves. It's a hard irony to know that someone else's pain and suffering has, as a consequence, given you reason to forage on.
I continue to help myself as much as possible. In the water a new freedom is sensed, and I loved hydrotherapy while I was well enough to do it up until recently, but at present, I exercise my arms with a rope and pulley that Pete rigged up for me. I exercise a little in the standing hoist and do deep breathing each morning
A couple of years ago I had a phone call from a young woman doing a short survey on community affairs. It had to do with income and happiness, and the last question was: Are you happy?
My answer was: Yes.
I hope to post some poetry in the future, especially about Australian animals.
A long time ago I looked up at the sky,
‘What will it be like in 2000?’ asked I.
But I was at school then...had never a care,
Too far away to be worried, I declare
Mum and Dad do the worrying, I’ll never get old,
It’s so far away...too young to be told.
I’ll be a kid for such a long while;
I wish I’d grow up in a bit faster style.
Well Holy Toledo! Did I ask for fast?
I thought my young life a mite longer would last!
2000 has come and also has gone,
I think I just missed it, though my memory’s not long!
Well I guess there’s some glory just being here today;
It’s not quite so easy being happy and gay.
The 20th-century is now in the past,
I’ve survived Y2K bugs and La Nina’s blast.
by Giddy
Chapter 49 Rampant Philosophy
Like a large part of society today, I find many modern practices distasteful. Good manners used to be strictly enforced in the home, and emphasized at school. Fighting at school meant discipline, albeit sometimes too harshly with the cane. We were made to feel shame for bad behaviour. Teachers were especially strict about home work; and good class work was rewarded with a merit stamp, or by holding up for inspection by the class. There were no other incentives, like pretty stickers, colourful dangling mobiles, or other distractions.
Just as now, teachers became very stressed, and I saw teachers use the cane out of frustration with the students work ability, rather than for punishment. That was wrong. But no discipline at all, or no boundaries for children, is unfair as it gives them no guidelines to behave by. I remember the teacher inspecting our necks and fingernails because he thought some of us hadn't washed properly, and the class being questioned as to whether or not we knew the right way to clean our teeth.
“Everybody, repeat the vowels out loud with your mouths open wide...aa...ee...ii...oo...uu.” Good speech was also important, and anybody saying ‘yous’ instead of you, was quickly admonished!
Neither teachers or pupils had the luxury of student-free days. By the time we left school we all had a good working knowledge of how to behave in society. No one is taking responsibility for this now, which is why young teenagers are running rampant on the streets searching for a reason to stop. They can’t find the boundaries. One of the most important things we learned during our education was respect...respect for elders, respect for teachers and leaders, and particularly respect for parents. Importantly, we had self respect and respect for our friends, because we knew that bad behaviour reflected on ourselves. Today I do have sympathy for most parents as they receive many mixed messages. The state is keen to give independence to the teenager, offering money in all sorts of guises. but they are taking no responsibility when things go wrong, and are quick to blame the parents when a crime is committed.
During family history research we found out that one of Pete's great uncles left an orphanage at the age of 12 to work on a farm. Later he joined the Army and during the second World War sent his sister a postcard from London. We admire the beautiful cursive script on the back of the card, and the simple, sincere message is a joy t0 read. It breaks my heart to hear that children can come through school these days and not be able to read or write.
In the same way it disturbs me that people of other nationalities are keen to migrate to this country, but not assimilate. To retain your ethnic origin is admirable, but the old saying 'together we stand, divided we fall' is very true. Creating little enclaves that cannot even communicate with other communities is fraught with danger. Maybe this is even the first step on the way to civil war. It is especially serious when people of a particular religious following are so fanatical in their beliefs that they want everybody to believe the same way. Do they trust their God? Our Christian God has given us the 10 Commandments, and whether we believe in God or not, what a tragedy that we are not obeying those Commandments. All the rules for a peaceful society are there; and we ignore them to our peril!
Changing our flag will not change our history; but at present we have two flags and having two flags is divisive. Instead, in my opinion, we should honour our aboriginal population by combining the flags and substituting the union Jack with their flag. It would be very colourful and look very attractive with the aboriginal flag in the corner and the blue sky and the Southern Cross holding us all together, (or use both.) They were here first. They deserve that recognition. After that we should move forward as a combined people and try to put behind us what went on in the past. The past is what it is, and no one can change that. Rehashing the past is holding us all back. It is a nonsense to judge people for what happened in past history. We need to acknowledge it and move on. I hope and pray that blacks and whites lift themselves above racism in the near future.
The recent philosophy for the care of babies has been to let them make up their own minds. How ridiculous! How distressing for a baby to be left unguided. How frustrating not to be able to cry, to express feelings in the only way a baby knows. How weakening to never discover independence, not learn the ability to go to sleep alone, or to do a painting, sing a song, and know that our best is good enough for those we love.
All people--all children--have strengths and weaknesses, and we must encourage our young people to make the most of their strengths, and to recognize that their weaknesses are unimportant, because they ALL are precious and valuable. Allowed to go unchecked, what we end up with is the ‘tail wagging the dog,’ or ‘the fox in charge of the hen house.’
Survival and coping are things we are not good at teaching our young people. Schools could teach more about surviving the marketing aimed at us all, but particularly at children.
Having M.S. has taught me patience. When I was still struggling to walk with the walker I found that if I could move forward at all, (even a few inches), at least I was making progress. It's the old story of the hare and the tortoise. Little by little you can often win the race, it just takes determination. What distresses me most, is that Peter has had to suffer along with me, especially during falls as my condition deteriorated. He has been, and still is, my rock, my dearest love, and irreproachable for his stoic dedication and kindness.
Every experience teaches us something. I learned that from Mum. "Even if it upsets you at the time, you can always learn something from every experience." I heard that many times. I also learned from her to have a positive attitude.
One day I called her by phone, as I do often because she doesn’t live in Brisbane. “How are you, Mum?”
"Oh, I'm all right..... but I have this pain in my shoulder which gets me down. But I shouldn’t complain. I should just be grateful that I'm alive to feel the pain!”
Never underestimate the value of family. You might not always get on with them, but your family will be around for the long haul. Someone who refuses to commit to you is unlikely to be around when you need them most. Also, remember in-laws are family too, and deserve your patience and understanding. (And sometimes great tolerance!) In any case it is worth remembering that you are an in-law to them.
Unfortunately with a disease like M.S., a person can feel trapped. There are times when I feel desperate for somebody to talk to about death. But who should that be? I can't talk to Peter. I can't talk to my mother. I can't talk to my children. They are all too precious to me to upset in that way. You can't just ring up and ask for a counsellor every five minutes. The Community-health Social Worker counselled me on the phone, but you need that sort of reassurance every day. I would be comforted if I knew that death was going to come suddenly. But that’s unlikely. So I carry on, smiling in the face of adversity. (Fake it till you make it!) I tried to talk to the Blue Care Minister about death, and he told me to discuss it with Peter!
In November of 2008 I read a book about Joe Louis, the American boxer of the 1950s and 60s, written by his son. This is a quote from near the end of the book, taken from the eulogy delivered by the Reverend Jesse Louis Jackson:
It (death) has scouts running around, advertising its arrival: grey hairs, bald spots, arthritis etc. So many of our geniuses have their sun eclipse at noon; Chopin at 39 died of typhoid fever, Mozart died at 36 of disease of the kidney, Mendelssohn at 38, Schubert at 31, Bellini at 34, Dr King and Malcolm at 39, Jesus the Christ and Donny Hathaway at 33. But God smiled on Joe. He experienced the sunset of life......
After reading that, I try to think of my life as a joyful celebration. I am grateful that I have lived to the age of 67. I have learnt much, because of the M.S. and in spite of the M.S. I am happy with the years that I have had so far. I don't particularly want any more, knowing the hardships I will probably experience and cause for everyone else.
In February 2009, we saw the terrible devastation of the fires in Victoria which killed nearly 200 people, shocking not only Australia, but the rest of the world. We knew our own lives were relatively untouched by comparison. We were taken out of ourselves. It's a hard irony to know that someone else's pain and suffering has, as a consequence, given you reason to forage on.
I continue to help myself as much as possible. In the water a new freedom is sensed, and I loved hydrotherapy while I was well enough to do it up until recently, but at present, I exercise my arms with a rope and pulley that Pete rigged up for me. I exercise a little in the standing hoist and do deep breathing each morning
A couple of years ago I had a phone call from a young woman doing a short survey on community affairs. It had to do with income and happiness, and the last question was: Are you happy?
My answer was: Yes.
I hope to post some poetry in the future, especially about Australian animals.
Friday, 21 September 2012
Chapter 48 After Depression, Contemplation.
Chapter 48 After Depression, Contemplation
I knew that I would miss work, but I thought the birth of our first granddaughter would be enough to fill the void in my life. Not only that, I formed a local group at my house, a simple weekly discussion group that met over morning tea to discuss natural health. I put an ad in the local paper, and chose a day of the week, and eventually assembled about eight interested participants, and some lively discussions took place. We exchanged books on natural health subjects too. As well, I intended to get more quilting projects underway. I thought I had prepared for the change, and would not miss work too much.
But I was wrong. I found that for no apparent reason I was bursting into tears, and I felt sad all the time. As usual I called on my first 'soft place to fall'. I rang my mother for a heart-to-heart. She wasn't surprised. Actually, her worst fears were confirmed, and she had been expecting me to get depressed, because she had suffered the same thing when she had to give up indoor bowls a few years earlier.
"I was afraid this would happen" she said.
I then consulted with the M.S. society and explained my dilemma, and before long they responded to my call for help by organizing a councillor to call me on the phone.
She was wonderful and knew exactly what was wrong. “You're going through a grieving process, and your feelings are perfectly natural.”
She complimented me on the measures I had taken to prepare for total retirement. As a matter of fact, she told me that she used my example at one of her Uni lectures she gave to students.
Because I understood what was going on at last, I recovered from the depression within a matter of weeks.
--0--
Buying the walker after we got to our new house was a great help, but I had persevered for so long with the stick that it wasn't long before I had trouble sustaining the energy level needed to complete the shopping. Peter always accompanied me at that stage anyway, and I found that most of the time I was forced to retire after about three or four aisles, to sit on a seat at the front of the shop until he’d finished the shopping. Eventually it became such a hassle going at all that I decided to stay home, much to Pete's distress. I felt bad about not giving him moral support, but one day he surprised me by announcing that we were going to look for a wheelchair, so that he could take me with him.
I wheeled my chair up and down the aisles and once even managed to get through the whole shop, but after a while my arms got too tired on our supermarket visits and I'd only make it about half way before I retired to a magazine rack to leaf through a gardening or quilting magazine. These days he often goes alone, finding it much less exhausting and more economical time wise.
In March 2007 I started attending the local respite centre once a week. Mostly I play 500. As it is now, (2012), I’ve found it’s interesting to observe life and society from a wheelchair. Not that it’s any different from that aspect, but you have more time to do so. At first it seems sad that things have to change so much, but after a while you realize that it’s a great privilege to be able to watch it change and to have some insight into why changes occur.
I was a child in the 1950’s, and a teenager in the 60’s, so trying to compare life then and life several decades later, and in a new century, is ludicrous. In the 50's life not only seemed, but did, move more slowly, especially on the farm. We had plenty of fun times but life could be very stressful, especially with Dad’s wild temper. Mostly for me I was just lonely, lonely for friends and bored and lonely for life. As I grew up I often thought of my mother’s life when she first came to live on the farm. She'd loved the city where she could dance every night of the week, and where there was life going on, where she could jump on a tram and go to town to shop, and where she was closer to her friends and family, especially her sisters. What a test of spirit it must have been for her! Buried out in the bush, she used to say.
Many times she remarked, "If we lived in the town, you kids would learn dancing. I'd see to it that you did all that, and elocution to."
One of my strongest memories is of arriving home from school in the afternoons. Mum would be there working in the kitchen and there was always plenty of food to eat. I've never known a child to arrive home from school and not be starving hungry. One year Mum picked all the peaches off the tree while they were still green, before the grubs had devastated the crop. She stewed them by boiling them in pots on the wood stove with lots of sugar, and stored them in jars in the fridge. They made the perfect after-school snack.
I didn't realise how much I depended on my mother being there, until I arrived home one day and the house was empty. Dad was clearing more land for cultivation and Mum was there beside him, stoking stamps for burning. I felt a hollow emptiness, a loneliness I’d never felt before.
In the 50s almost every man wore a felt hat. Dad’s hat practically lived on his head until it wore out. If he went to town he wore his hat, and when a lady approached he raised his hat to her, although sometimes he just touched the front brim. But it was a mark of respect, and a man never wore his hat at the meal table. Dad always dropped his on the floor beside his chair.
Unfortunately, good manners are not such a priority now. As a matter of fact anything old-fashioned is not generally popular, which is bad judgement on the part of this generation, although it is not really their fault. When you throw out good manners you throw out one of your standards in society. It started in the 60s in my opinion. That's when the rot started and big changes have continued ever since. Change in itself isn't bad, but it has to be done wisely and cautiously. Sometimes in an effort to change the status quo we rush in making worse blunders. Of course the increase in electronics has been mind blowing. People of my generation often treat it with suspicion and reluctance, finding the new technology challenging, and sometimes overwhelming. I'm sure I have been a great disappointment to my daughter in this regard. When I first gave up work she gave me an Internet diary with many Internet addresses already entered.
She wrote in it, "Mum, the world is at your fingertips." She must have been disappointed when she found how reluctant I was to let the world in.
Gradually though I have made some progress and have managed to write this memoir using my word recognition program and microphone. That has been necessary because of the loss of fine motor ability in my hands.
When I went to school basic education was a necessity above all else. In the 50s we learnt spellings and tables by rote, practised writing in copy books and learnt to draw maps by free-hand. The teacher managed the whole school of 60 children in different classes all on his own, or if it was in the city he managed a class of 50 or 60 children all on his own. It wasn't ideal and discipline was tough, but above all else we learned the work. Everyone could spell. Everyone could write, even the poorer scholars. And everyone could read.
When our son was in grade 9, I worried about his inability to spell well, so I arranged an interview with his young teacher. "Oh, don't worry about his spelling, it’s the English language. I can't spell either." I was stunned, and lost for words, but I never forgot that remark, and I never lost the feeling of disgust at her attitude.
I should have felt sorry for her though. Despite her youthful naivete, she was obviously a product of the same system.
I have noticed that attitude in the public arena a lot lately, especially in the last few years. If you can't manage something you simply blame the system. When a research doctor doesn't like recent research by an opposing authority, he simply discredits the research.
Eventually, the truth has to be faced, though.
I knew that I would miss work, but I thought the birth of our first granddaughter would be enough to fill the void in my life. Not only that, I formed a local group at my house, a simple weekly discussion group that met over morning tea to discuss natural health. I put an ad in the local paper, and chose a day of the week, and eventually assembled about eight interested participants, and some lively discussions took place. We exchanged books on natural health subjects too. As well, I intended to get more quilting projects underway. I thought I had prepared for the change, and would not miss work too much.
But I was wrong. I found that for no apparent reason I was bursting into tears, and I felt sad all the time. As usual I called on my first 'soft place to fall'. I rang my mother for a heart-to-heart. She wasn't surprised. Actually, her worst fears were confirmed, and she had been expecting me to get depressed, because she had suffered the same thing when she had to give up indoor bowls a few years earlier.
"I was afraid this would happen" she said.
I then consulted with the M.S. society and explained my dilemma, and before long they responded to my call for help by organizing a councillor to call me on the phone.
She was wonderful and knew exactly what was wrong. “You're going through a grieving process, and your feelings are perfectly natural.”
She complimented me on the measures I had taken to prepare for total retirement. As a matter of fact, she told me that she used my example at one of her Uni lectures she gave to students.
Because I understood what was going on at last, I recovered from the depression within a matter of weeks.
--0--
Buying the walker after we got to our new house was a great help, but I had persevered for so long with the stick that it wasn't long before I had trouble sustaining the energy level needed to complete the shopping. Peter always accompanied me at that stage anyway, and I found that most of the time I was forced to retire after about three or four aisles, to sit on a seat at the front of the shop until he’d finished the shopping. Eventually it became such a hassle going at all that I decided to stay home, much to Pete's distress. I felt bad about not giving him moral support, but one day he surprised me by announcing that we were going to look for a wheelchair, so that he could take me with him.
I wheeled my chair up and down the aisles and once even managed to get through the whole shop, but after a while my arms got too tired on our supermarket visits and I'd only make it about half way before I retired to a magazine rack to leaf through a gardening or quilting magazine. These days he often goes alone, finding it much less exhausting and more economical time wise.
In March 2007 I started attending the local respite centre once a week. Mostly I play 500. As it is now, (2012), I’ve found it’s interesting to observe life and society from a wheelchair. Not that it’s any different from that aspect, but you have more time to do so. At first it seems sad that things have to change so much, but after a while you realize that it’s a great privilege to be able to watch it change and to have some insight into why changes occur.
I was a child in the 1950’s, and a teenager in the 60’s, so trying to compare life then and life several decades later, and in a new century, is ludicrous. In the 50's life not only seemed, but did, move more slowly, especially on the farm. We had plenty of fun times but life could be very stressful, especially with Dad’s wild temper. Mostly for me I was just lonely, lonely for friends and bored and lonely for life. As I grew up I often thought of my mother’s life when she first came to live on the farm. She'd loved the city where she could dance every night of the week, and where there was life going on, where she could jump on a tram and go to town to shop, and where she was closer to her friends and family, especially her sisters. What a test of spirit it must have been for her! Buried out in the bush, she used to say.
Many times she remarked, "If we lived in the town, you kids would learn dancing. I'd see to it that you did all that, and elocution to."
One of my strongest memories is of arriving home from school in the afternoons. Mum would be there working in the kitchen and there was always plenty of food to eat. I've never known a child to arrive home from school and not be starving hungry. One year Mum picked all the peaches off the tree while they were still green, before the grubs had devastated the crop. She stewed them by boiling them in pots on the wood stove with lots of sugar, and stored them in jars in the fridge. They made the perfect after-school snack.
I didn't realise how much I depended on my mother being there, until I arrived home one day and the house was empty. Dad was clearing more land for cultivation and Mum was there beside him, stoking stamps for burning. I felt a hollow emptiness, a loneliness I’d never felt before.
In the 50s almost every man wore a felt hat. Dad’s hat practically lived on his head until it wore out. If he went to town he wore his hat, and when a lady approached he raised his hat to her, although sometimes he just touched the front brim. But it was a mark of respect, and a man never wore his hat at the meal table. Dad always dropped his on the floor beside his chair.
Unfortunately, good manners are not such a priority now. As a matter of fact anything old-fashioned is not generally popular, which is bad judgement on the part of this generation, although it is not really their fault. When you throw out good manners you throw out one of your standards in society. It started in the 60s in my opinion. That's when the rot started and big changes have continued ever since. Change in itself isn't bad, but it has to be done wisely and cautiously. Sometimes in an effort to change the status quo we rush in making worse blunders. Of course the increase in electronics has been mind blowing. People of my generation often treat it with suspicion and reluctance, finding the new technology challenging, and sometimes overwhelming. I'm sure I have been a great disappointment to my daughter in this regard. When I first gave up work she gave me an Internet diary with many Internet addresses already entered.
She wrote in it, "Mum, the world is at your fingertips." She must have been disappointed when she found how reluctant I was to let the world in.
Gradually though I have made some progress and have managed to write this memoir using my word recognition program and microphone. That has been necessary because of the loss of fine motor ability in my hands.
When I went to school basic education was a necessity above all else. In the 50s we learnt spellings and tables by rote, practised writing in copy books and learnt to draw maps by free-hand. The teacher managed the whole school of 60 children in different classes all on his own, or if it was in the city he managed a class of 50 or 60 children all on his own. It wasn't ideal and discipline was tough, but above all else we learned the work. Everyone could spell. Everyone could write, even the poorer scholars. And everyone could read.
When our son was in grade 9, I worried about his inability to spell well, so I arranged an interview with his young teacher. "Oh, don't worry about his spelling, it’s the English language. I can't spell either." I was stunned, and lost for words, but I never forgot that remark, and I never lost the feeling of disgust at her attitude.
I should have felt sorry for her though. Despite her youthful naivete, she was obviously a product of the same system.
I have noticed that attitude in the public arena a lot lately, especially in the last few years. If you can't manage something you simply blame the system. When a research doctor doesn't like recent research by an opposing authority, he simply discredits the research.
Eventually, the truth has to be faced, though.
Thursday, 20 September 2012
Chapter 47 Inevitability
Chapter 47 Inevitability
When my work involved hospital visiting, it meant I was walking upstairs or across hot car parks carrying books, and bags of pamphlets to hand out. The weight aggravated my legs and hips and threw me off balance. I was self-conscious and embarrassed, aware that I was probably walking strangely, or dragging my right foot up each step as I went.
Knocking on private room doors was hardest. I had to be careful to avoid the time when doctors were visiting, or a stack of 'rellies ' were visiting and crowding out the room, or the woman was having some sort of procedure done. Then there was always the chance she was just having a well earned rest. It frustrated the hell out of me.
Another thing I had to do when hospital visiting was document possible follow-up clinic cases from the special care nursery and the premature baby nursery, and notify the appropriate staff from outlying regional clinics. These had to be reported on at case meetings with doctors and hospital charge nurses, which scared me silly! Stemming from my childhood was still the remains of intimidation in the presence of doctors and senior staff. Unfortunately, although training days had done a lot to eliminate this fear for me, I was still nervous at meetings and when I had to go into the premature nursery to hunt through files. Usually, I faked nonchalence.
One day I did the home visiting clinic in a new estate and had to walk over uneven, newly disturbed ground in the yard. carrying books and the baby scales. I came close to falling as I struggled to maintain my balance.When I got back to the clinic I burst into tears, unable to hold back my distress any longer. The girls were understanding and comforted me, but after that I refused to do home visiting or hospital visiting, and in 1998 I was forced to bring the work for the baby clinics to a close. I should've been sad I suppose, but it was such a relief not to have to face those challenges any longer. I went on working for the chemist, just a half day a week, where I was sitting down most of the morning.
I still worked for Child Health, mostly at the residential centre, and often at the clinic near home. I was quite friendly by now with the local clinic charge nurse and when things got too tough for me she suggested I could do a half day if I wished when she was desperate for staff. I did this a few times, but working in the clinics involved the challenge of weighing babies, and the most difficult of all, due to poor balance and weakness in my right arm, measuring babies.
In the chemist clinic in the shopping centre, the problem of my bladder was still a major aggravation. Finally forced to excuse myself from the waiting mothers, I’d take a deep breath, and head off to the toilet block at the far end, warning myself sternly all the way: 'Concentrate! Keep your toes out! Don't fall! For God's sake don't fall! Go slowly, don't hurry!'
My toes turning in was part of the change happening from the M.S. and was more and more difficult to control as time went on. I walked in fear, picturing myself prostrate on the floor. I was conscious of people staring out of their shop doorways and I could hear them thinking, 'There she goes again.'
When my pelvis weakened even more, walking became almost painful, and so distressing that one morning I sat down in my chair and dissolved into tears. Unfortunately one of the mothers was already there with her baby.
This girl always came early to the clinic on her way to work. She had a mountain of personal problems herself. While she was in hospital having her baby, her partner was carrying on an affair. She was going through a nasty divorce and court case over custody of the baby. It came out during the case that he had brought the girl to visit her in the hospital! Having good family support, she won the case. Instead of me giving her comfort that morning, she was giving comfort to me.
When I got a walking stick it made a huge difference, preventing the pain in my hips. In the end though, walking became so difficult even with the stick, I made a personal decision to buy a wheeled walker and eventually, in about 2002, to take the walker to work. The relief was enormous and at last I felt safe while walking. I still had to go to the toilet just as often, and I still passed people looking out of their doorways surreptitiously with that, 'I shouldn't look but that poor girl is getting worse' look on their faces. Nobody smiled. I felt so obvious.
Fortunately, by this time Peter had altered his work hours to nine to five, as manager of the roster's department. I was due to start at nine o'clock at the shopping centre chemist, so he dropped me off with my walker and then drove on to work at Kedron Park.
Eventually, even negotiating the gentle, shopping centre entrance ramp with the walker became a challenge. I was scared that the walker would tip over and I was having so much difficulty clearing the ground with my right foot that going up a ramp was almost impossible. Consequently, Pete had to lift the walker onto the footpath and help me up there.
I continued in this way for quite some time. The staff at the chemist shop did everything they could to help. One of the junior assistants became my dedicated helper, ensuring the baby products section was well-stocked, and negotiating with company reps to get me samples to hand out to mothers in need. I had a good rapport with the mums. Even after I left the job some of them still phoned me for advice. I loved my job. When I became a child health nurse I felt I had found my niche as far as career was concerned.
Finally in February of 2003 I gave in my notice for the last time. (I had handed it in twice before but had decided to carry on, not being able to bring myself to leave.) At last I had retired. It was a great relief but Pete and I would miss the $80 a week. I especially missed it as I had always performed fiscal gymnastics with that little income, sometimes saving up to buy a surprise gift for Pete for his birthday or Christmas. I felt lazy, and carried a certain amount of guilt as now I was not contributing anything to the household income. (That's when I decided to become a 'writer'!) I still cooked the meals and did most of the housework but vacuuming was beyond me as it had been for some years. Pete worked all day at his job and did vacuuming on weekends.
When my work involved hospital visiting, it meant I was walking upstairs or across hot car parks carrying books, and bags of pamphlets to hand out. The weight aggravated my legs and hips and threw me off balance. I was self-conscious and embarrassed, aware that I was probably walking strangely, or dragging my right foot up each step as I went.
Knocking on private room doors was hardest. I had to be careful to avoid the time when doctors were visiting, or a stack of 'rellies ' were visiting and crowding out the room, or the woman was having some sort of procedure done. Then there was always the chance she was just having a well earned rest. It frustrated the hell out of me.
Another thing I had to do when hospital visiting was document possible follow-up clinic cases from the special care nursery and the premature baby nursery, and notify the appropriate staff from outlying regional clinics. These had to be reported on at case meetings with doctors and hospital charge nurses, which scared me silly! Stemming from my childhood was still the remains of intimidation in the presence of doctors and senior staff. Unfortunately, although training days had done a lot to eliminate this fear for me, I was still nervous at meetings and when I had to go into the premature nursery to hunt through files. Usually, I faked nonchalence.
One day I did the home visiting clinic in a new estate and had to walk over uneven, newly disturbed ground in the yard. carrying books and the baby scales. I came close to falling as I struggled to maintain my balance.When I got back to the clinic I burst into tears, unable to hold back my distress any longer. The girls were understanding and comforted me, but after that I refused to do home visiting or hospital visiting, and in 1998 I was forced to bring the work for the baby clinics to a close. I should've been sad I suppose, but it was such a relief not to have to face those challenges any longer. I went on working for the chemist, just a half day a week, where I was sitting down most of the morning.
I still worked for Child Health, mostly at the residential centre, and often at the clinic near home. I was quite friendly by now with the local clinic charge nurse and when things got too tough for me she suggested I could do a half day if I wished when she was desperate for staff. I did this a few times, but working in the clinics involved the challenge of weighing babies, and the most difficult of all, due to poor balance and weakness in my right arm, measuring babies.
In the chemist clinic in the shopping centre, the problem of my bladder was still a major aggravation. Finally forced to excuse myself from the waiting mothers, I’d take a deep breath, and head off to the toilet block at the far end, warning myself sternly all the way: 'Concentrate! Keep your toes out! Don't fall! For God's sake don't fall! Go slowly, don't hurry!'
My toes turning in was part of the change happening from the M.S. and was more and more difficult to control as time went on. I walked in fear, picturing myself prostrate on the floor. I was conscious of people staring out of their shop doorways and I could hear them thinking, 'There she goes again.'
When my pelvis weakened even more, walking became almost painful, and so distressing that one morning I sat down in my chair and dissolved into tears. Unfortunately one of the mothers was already there with her baby.
This girl always came early to the clinic on her way to work. She had a mountain of personal problems herself. While she was in hospital having her baby, her partner was carrying on an affair. She was going through a nasty divorce and court case over custody of the baby. It came out during the case that he had brought the girl to visit her in the hospital! Having good family support, she won the case. Instead of me giving her comfort that morning, she was giving comfort to me.
When I got a walking stick it made a huge difference, preventing the pain in my hips. In the end though, walking became so difficult even with the stick, I made a personal decision to buy a wheeled walker and eventually, in about 2002, to take the walker to work. The relief was enormous and at last I felt safe while walking. I still had to go to the toilet just as often, and I still passed people looking out of their doorways surreptitiously with that, 'I shouldn't look but that poor girl is getting worse' look on their faces. Nobody smiled. I felt so obvious.
Fortunately, by this time Peter had altered his work hours to nine to five, as manager of the roster's department. I was due to start at nine o'clock at the shopping centre chemist, so he dropped me off with my walker and then drove on to work at Kedron Park.
Eventually, even negotiating the gentle, shopping centre entrance ramp with the walker became a challenge. I was scared that the walker would tip over and I was having so much difficulty clearing the ground with my right foot that going up a ramp was almost impossible. Consequently, Pete had to lift the walker onto the footpath and help me up there.
I continued in this way for quite some time. The staff at the chemist shop did everything they could to help. One of the junior assistants became my dedicated helper, ensuring the baby products section was well-stocked, and negotiating with company reps to get me samples to hand out to mothers in need. I had a good rapport with the mums. Even after I left the job some of them still phoned me for advice. I loved my job. When I became a child health nurse I felt I had found my niche as far as career was concerned.
Finally in February of 2003 I gave in my notice for the last time. (I had handed it in twice before but had decided to carry on, not being able to bring myself to leave.) At last I had retired. It was a great relief but Pete and I would miss the $80 a week. I especially missed it as I had always performed fiscal gymnastics with that little income, sometimes saving up to buy a surprise gift for Pete for his birthday or Christmas. I felt lazy, and carried a certain amount of guilt as now I was not contributing anything to the household income. (That's when I decided to become a 'writer'!) I still cooked the meals and did most of the housework but vacuuming was beyond me as it had been for some years. Pete worked all day at his job and did vacuuming on weekends.
Sunday, 16 September 2012
Chapter 46 Life's Adjustments
Chapter 46 Life’s Adjustments
Steph studied child development at Uni so she wasn't ignorant on the subject, and we talked of baby care often on the phone. Her baby thrived.
One day while she was pregnant with her second baby, she planned to visit me, and I decided to get the bathroom mopped over before she came. I was past being able to use a regular mop and had bought a little short one about three feet long. It was agoniing work, and before long I put my foot on the soapy floor tiles and slipped. I was unhurt, but stuck on the floor unable to move, I was forced to wait until she arrived.
When she came and found me, she was horrified and upset. Interestingly, the baby, nearly two, was delighted, and collapsed into my arms hugging and kissing me, ecstatic that I was down on her level. She seemed to think it was time to play.
I wanted Steph to be cautious because of her advanced pregnancy, but she insisted on dragging me out of the bathroom and propping me up against the bed. Then she tried to lift me. I’m not small; I’m what used to be called tall, and overweight since being less active.
Desperately, I begged her to go across the road and ask for help from the young woman in the house.
“All right, I’ll just put the baby in the lounge, Mum,” she said, “and then I’ll go.”
When she returned she was aghast to find the baby with the tail of a lizard in her mouth.
“Mum,” she groaned, “My daughter had a lizard’s tail in her mouth, and it was still wriggling!”
The two helpers together got me up easily and I was soon back walking with my walker.
Although she had been told several times by the hospital staff she was having a girl, to everyone’s delight, especially her husbands, she gave birth to a son in 2005.
In the late 90‘s Ashley too obtained a job at Princess Alexandra Hospital. Previously, he taught karate lessons and had a variety of other jobs. Though he started at the hospital as a messenger, his integrity and ability to help out in any job asked of him paid off. One day as I sat quilting at the sewing machine, I got a rare phone call from him.
“Hi Mum, just wanted to let you know I got a new job...I’m the manager of medical records now.” We had no idea he had applied for any jobs. A mother needs more of those kind of phone calls.
At karate he met a pretty young colleague and fell madly in love. She had been married twice before and had four sweet little children. The couple married in 1998. Unfortunately, by 2000 they were separated. They divorced in 2002, and in May of 2005, Ashley was married for the second time to his new sweetheart, 10 years his junior. They already had an eight-month-old daughter. They now have two sons as well.
In 2000 I was still using the stick at work, and what caused me so much agony was walking to the toilet from the chemist shop baby clinic. It became very busy and I felt embarrassed to walk away while mothers were sitting there with their babies, waiting for a consultation with me. There were times when I sat in agony, and fear of a disaster.
For a time, I took herbal tablets for a sluggish bladder, and they worked, but after a while, I developed side effects from them. Forever after that I relished the sound of that trickling water in the toilet. What a privilege! Most people with M.S. have similar problems. Medical intervention usually consists of catheterisation, but I have resisted this consistently for many years, knowing full well that catheters inevitably introduce infection.
--0--
Back in 1997 I had gone to see the film, 'How to make an American Quilt,' and the minute the movie finished, I knew I too had to make a quilt! Steph was overseas, and I made my first quilt for her. Not knowing anything about quilting, and not being able to use a needle because of hand weakness and loss of fine motor skills, I devised a plan I thought I could manage. I bought a large quantity of unbleached calico, and collected lengths of coloured fabrics that I took a fancy to. Finally, I set to work with pen and ruler and ruled up squares, cutting them out with scissors. The calico squares were an inch larger all round than the coloured squares, and I machine-sewed one on top of the other, making a half inch seam and poking loose synthetic filling in as I sewed. After sewing all the squares together, though quite imperfect, it looked attractive, (and it was my own creation.)
In 1998, (via Ashly’s wedding photographer,) I was persuaded to try N... vitamins. It was suggested I consult a highly qualified naturopath near the Gold Coast who also used them, and I attended his clinic for quite some time, until the cost of the supplements and the distance to travel became too high a hill to climb.
Also in 1997 I visited a new dentist who was very interested in nutrition, (so much so that he treated his patients nutritionally as well as dentally,) and his expertise included acupuncture and electroacupuncture. He employed a naturopath in his rooms to assist patients on to a healthy diet, and he understood a lot about heavy metal toxicity. He gave me literature explaining mercury toxicity and its possible link with M.S. He had a particular interest in M.S., and I was grateful for his help and advice.
The dentist used electroacupuncture to test my levels of heavy metals and toxins. The results showed I had high levels of Mercury, arsenic and other toxic substances. On his advice I took specific vitamins and minerals, and he removed all my amalgam fillings, three of which were root fillings. Those were particularly difficult, took two hours each, and were the worst ordeal I have ever had to endure at the dentist. This was because, according to specialist dentists, when root fillings are removed the bone should be scraped to stimulate new bone growth, and remove all trace of infection. I understand it is a specialised type of dentistry, requiring skill to avoid causing the patient to swallow amalgam fragments and result in more toxicity to the bloodstream.
The dentist was also using N... products at the time, and sold the toothpaste at his surgery. I started taking vitamins and minerals according to his advice.
After the dental treatment failed to make any noticeable improvements in my condition, he referred me to a GP he knew who had a particular interest in nutrition. The new doctor administered intravenous DMSO, (dimethyl sulphoxide,) via four monthly IV injections, to rid the body of Mercury, and when that had limited success, he gave me DMSA (dimercaptosuccinic acid) tablets to rid the brain of Mercury. That also failed to act significantly.
Incidentally, on the Internet the GP came across a request from a research doctor in Melbourne for blood samples from patients with autoimmune diseases. As it happened, he had three patients with M.S. (including myself). He took the blood samples from the three of us and sent them away, only to find that we all had coxiella burnettii, the causative agent responsible for Q fever. Consequently he advised me that he would give me a script for antibiotics. There were to be four different antibiotics used once a month for a week each, over a four-month period, rotated for a period of up to two years, depending on results. During the off three weeks of the month, abdominal integrity was to be restored using probiotics.
His words to me were, "You won't need to come back, I'll call you when I have the script ready". (I understood he wanted to do some more research on the latest treatment and appropriate antibiotics for Q fever.)
Three weeks later, as I hadn't heard anything, I rang his rooms and left a message with his secretary, questioning the delay. “I’ll leave a message in his pigeonhole,” she responded. I'm still waiting for his call!
For what it was worth in 2008 via e-mail, I related the story of the Q fever to a research doctor at Sydney University. He accepted it graciously.
It is disappointing that I made no great improvement while I was under the care of either the dentist or his professional colleague, although I must admit that I was quite well in general health during that time. In fact, ever since I started on my better nutritional programme with Laurie Power, I have felt well and people have remarked that I, 'look so well'. In fact it’s only rarely that I’ve had a cold; and that has only been after I’ve strayed from the diet. Often people were, and still are, astounded that M.S. was the problem that I had.
Again in1997, a friend referred me to a massage therapist. She was unfamiliar with MS, but had managed to cure a client of Dowagers Hump, and another of Elephantiasis. She massaged me six days out of seven for two years, for the princely sum of $10 a time. They were full body massages which took two hours. At first I improved somewhat, but after a year I realised I was still slowly deteriorating. I wasn't surprised because I knew she couldn’t cure me. But because of her earlier triumphs, she was disappointed.
One day she suggested, “Why don’t you just get up and walk without thinking about it? You never know, it might work.”
I replied, "Oh, that’s happened before--and that's when I fall."
After that first two years I had massages about twice a week, but eventually I realised that the two hours was too long, and it was taking me some days to recover. I insisted she reduce them to an hour, and soon after that I started using the walking stick.
Two other friends, were into natural health in the most extreme way I have ever known. The couple introduced me to many things over the years, some of which I adopted and some I rejected. They were always sure they had found the answer this time--could cure my MS this time. I couldn't possibly list all the different cures or treatments they tried on themselves first. Always certain they had found the answer this time, they were very convincing. Peter, being the more level headed of the two of us, often rejected their ideas before I did. One time I remember being persuaded to drink a cup of water with a teaspoon of garden minerals mixed up in it, (which were purchased from a landscaping yard.) After a while good sense prevailed and I stopped doing that though. For liver cleansing, they used Dr Gerson’s cancer regime of coffee enemas, but one of the most bizarre treatments they tried, which I never for a moment considered, was drinking their own urine.
They did however, in 1996, introduce me to an American company selling vitamins and minerals of a high quality. Notably, they also sold natural progesterone cream under another name. I listened to cassette tapes of Dr John Lee talking about natural progesterone, which were very interesting, and staggeringly enlightening. I was having some mild, but nevertheless aggravating, menopausal symptoms at the time and the progesterone cream made a big difference. I was also happy to know that it was capable of balancing all the hormones in the body, and also increasing bone density. In fact there were very many benefits to using the cream and I still use it today, under the guidance of a GP. Although it was freely available when I started to use it.
I felt so well in ’97 I decided to apply for a part-time job in a baby clinic district near home. I was also working for the Fortitude Valley Child Health Clinic at the time which incorporated the Royal Women's Hospital home visiting program, which I was being trained to do so that I could relieve the sister who was already doing that job. She was a sweet girl and one evening she came to my house and advised me about words and phrases that I needed to use at my interview for the job.
This was the time when we were undergoing all the changes brought on by the Goss Labour government. It was mind blowing. She showed me an 18 page application she had written out for a job. The repetitiveness and the airy fairy wording were phenomenal. Peter had helped me with the written application that I’d put in for my job, and we had used a bullet-point format which meant that I had sent in a fairly brief application. I prepared palm cards with key words for my interview, and faced a panel of three charge nurses. The chairman of the panel told me later that I had topped the interview. I must have done a good job on those fancy words and phrases! But because my written application was so brief, I didn't get the job.
As it turned out, I realised within months that I had been lucky not to get that position. My legs were weakening to the point where I was having bad dreams about coping with daily life. If I worked a day in a baby clinic, I dreaded having to get up from behind the desk. It took all my strength to stay steady--to not look as if I was drunk. One night I dreamt that I was clambering over rocks along the side of a busy highway. I remember the terrible effort, but I also remember how pleased I felt that I could jump from one rock to another. In reality, I could no more clamber over rocks than fly to the moon.
--0--
After my first amateurish quilting effort, a book on colour-wash quilts inspired me to make a quilt for mum. I used a picture as my guide. I lost my temper so many times though, that Peter begged me to do the Beginner's Quilting course. I was determined to finish the quilt once I’d got started anyway, and despite the terrible quality of my sewing, Mum loved her quilt, and still uses it today. The cost of the course was $90, but with Pete's encouragement, I decided to bite the bullet. I loved that course.
Although still driving, on arrival I couldn't carry my sewing machine into the building, and was forced to depend on someone else to carry it from the car and haul it into position for me. They did it willingly, but of course I was embarrassed.
Although my right foot was starting to drop, I still had plenty of strength in it for the sewing machine pedal, (and the car accelerator pedal....Thank goodness!) Eventually though, the foot became so weak that I had to lift it off with my hands under my knee. Many a time the machine went on a wild ride on its own while I struggled to get my foot off the pedal. When it became just too weak to do the job, I pushed the pedal over to the left and used my left foot. It didn't work for driving the car though! And one day while driving home from work, I got too close to the back of another car which pulled up suddenly, and it frightened me half to death. I took to the gravel, struggling to get my foot off the accelerator, and avoided disaster, but I knew then it was time to give driving away.
Anyway I attacked the whole quilting process with zeal and despite the fact that one quilt could take six months or more, I ploughed on and in the end made quite a few quilts.
Down at The Patchwork Tree quilting centre one day when I was lamenting my inadequacies, the manager said to me. "Anything you do, is right." I found that very encouraging, and never forgot what she said.
Steph studied child development at Uni so she wasn't ignorant on the subject, and we talked of baby care often on the phone. Her baby thrived.
One day while she was pregnant with her second baby, she planned to visit me, and I decided to get the bathroom mopped over before she came. I was past being able to use a regular mop and had bought a little short one about three feet long. It was agoniing work, and before long I put my foot on the soapy floor tiles and slipped. I was unhurt, but stuck on the floor unable to move, I was forced to wait until she arrived.
When she came and found me, she was horrified and upset. Interestingly, the baby, nearly two, was delighted, and collapsed into my arms hugging and kissing me, ecstatic that I was down on her level. She seemed to think it was time to play.
I wanted Steph to be cautious because of her advanced pregnancy, but she insisted on dragging me out of the bathroom and propping me up against the bed. Then she tried to lift me. I’m not small; I’m what used to be called tall, and overweight since being less active.
Desperately, I begged her to go across the road and ask for help from the young woman in the house.
“All right, I’ll just put the baby in the lounge, Mum,” she said, “and then I’ll go.”
When she returned she was aghast to find the baby with the tail of a lizard in her mouth.
“Mum,” she groaned, “My daughter had a lizard’s tail in her mouth, and it was still wriggling!”
The two helpers together got me up easily and I was soon back walking with my walker.
Although she had been told several times by the hospital staff she was having a girl, to everyone’s delight, especially her husbands, she gave birth to a son in 2005.
In the late 90‘s Ashley too obtained a job at Princess Alexandra Hospital. Previously, he taught karate lessons and had a variety of other jobs. Though he started at the hospital as a messenger, his integrity and ability to help out in any job asked of him paid off. One day as I sat quilting at the sewing machine, I got a rare phone call from him.
“Hi Mum, just wanted to let you know I got a new job...I’m the manager of medical records now.” We had no idea he had applied for any jobs. A mother needs more of those kind of phone calls.
At karate he met a pretty young colleague and fell madly in love. She had been married twice before and had four sweet little children. The couple married in 1998. Unfortunately, by 2000 they were separated. They divorced in 2002, and in May of 2005, Ashley was married for the second time to his new sweetheart, 10 years his junior. They already had an eight-month-old daughter. They now have two sons as well.
In 2000 I was still using the stick at work, and what caused me so much agony was walking to the toilet from the chemist shop baby clinic. It became very busy and I felt embarrassed to walk away while mothers were sitting there with their babies, waiting for a consultation with me. There were times when I sat in agony, and fear of a disaster.
For a time, I took herbal tablets for a sluggish bladder, and they worked, but after a while, I developed side effects from them. Forever after that I relished the sound of that trickling water in the toilet. What a privilege! Most people with M.S. have similar problems. Medical intervention usually consists of catheterisation, but I have resisted this consistently for many years, knowing full well that catheters inevitably introduce infection.
--0--
Back in 1997 I had gone to see the film, 'How to make an American Quilt,' and the minute the movie finished, I knew I too had to make a quilt! Steph was overseas, and I made my first quilt for her. Not knowing anything about quilting, and not being able to use a needle because of hand weakness and loss of fine motor skills, I devised a plan I thought I could manage. I bought a large quantity of unbleached calico, and collected lengths of coloured fabrics that I took a fancy to. Finally, I set to work with pen and ruler and ruled up squares, cutting them out with scissors. The calico squares were an inch larger all round than the coloured squares, and I machine-sewed one on top of the other, making a half inch seam and poking loose synthetic filling in as I sewed. After sewing all the squares together, though quite imperfect, it looked attractive, (and it was my own creation.)
In 1998, (via Ashly’s wedding photographer,) I was persuaded to try N... vitamins. It was suggested I consult a highly qualified naturopath near the Gold Coast who also used them, and I attended his clinic for quite some time, until the cost of the supplements and the distance to travel became too high a hill to climb.
Also in 1997 I visited a new dentist who was very interested in nutrition, (so much so that he treated his patients nutritionally as well as dentally,) and his expertise included acupuncture and electroacupuncture. He employed a naturopath in his rooms to assist patients on to a healthy diet, and he understood a lot about heavy metal toxicity. He gave me literature explaining mercury toxicity and its possible link with M.S. He had a particular interest in M.S., and I was grateful for his help and advice.
The dentist used electroacupuncture to test my levels of heavy metals and toxins. The results showed I had high levels of Mercury, arsenic and other toxic substances. On his advice I took specific vitamins and minerals, and he removed all my amalgam fillings, three of which were root fillings. Those were particularly difficult, took two hours each, and were the worst ordeal I have ever had to endure at the dentist. This was because, according to specialist dentists, when root fillings are removed the bone should be scraped to stimulate new bone growth, and remove all trace of infection. I understand it is a specialised type of dentistry, requiring skill to avoid causing the patient to swallow amalgam fragments and result in more toxicity to the bloodstream.
The dentist was also using N... products at the time, and sold the toothpaste at his surgery. I started taking vitamins and minerals according to his advice.
After the dental treatment failed to make any noticeable improvements in my condition, he referred me to a GP he knew who had a particular interest in nutrition. The new doctor administered intravenous DMSO, (dimethyl sulphoxide,) via four monthly IV injections, to rid the body of Mercury, and when that had limited success, he gave me DMSA (dimercaptosuccinic acid) tablets to rid the brain of Mercury. That also failed to act significantly.
Incidentally, on the Internet the GP came across a request from a research doctor in Melbourne for blood samples from patients with autoimmune diseases. As it happened, he had three patients with M.S. (including myself). He took the blood samples from the three of us and sent them away, only to find that we all had coxiella burnettii, the causative agent responsible for Q fever. Consequently he advised me that he would give me a script for antibiotics. There were to be four different antibiotics used once a month for a week each, over a four-month period, rotated for a period of up to two years, depending on results. During the off three weeks of the month, abdominal integrity was to be restored using probiotics.
His words to me were, "You won't need to come back, I'll call you when I have the script ready". (I understood he wanted to do some more research on the latest treatment and appropriate antibiotics for Q fever.)
Three weeks later, as I hadn't heard anything, I rang his rooms and left a message with his secretary, questioning the delay. “I’ll leave a message in his pigeonhole,” she responded. I'm still waiting for his call!
For what it was worth in 2008 via e-mail, I related the story of the Q fever to a research doctor at Sydney University. He accepted it graciously.
It is disappointing that I made no great improvement while I was under the care of either the dentist or his professional colleague, although I must admit that I was quite well in general health during that time. In fact, ever since I started on my better nutritional programme with Laurie Power, I have felt well and people have remarked that I, 'look so well'. In fact it’s only rarely that I’ve had a cold; and that has only been after I’ve strayed from the diet. Often people were, and still are, astounded that M.S. was the problem that I had.
Again in1997, a friend referred me to a massage therapist. She was unfamiliar with MS, but had managed to cure a client of Dowagers Hump, and another of Elephantiasis. She massaged me six days out of seven for two years, for the princely sum of $10 a time. They were full body massages which took two hours. At first I improved somewhat, but after a year I realised I was still slowly deteriorating. I wasn't surprised because I knew she couldn’t cure me. But because of her earlier triumphs, she was disappointed.
One day she suggested, “Why don’t you just get up and walk without thinking about it? You never know, it might work.”
I replied, "Oh, that’s happened before--and that's when I fall."
After that first two years I had massages about twice a week, but eventually I realised that the two hours was too long, and it was taking me some days to recover. I insisted she reduce them to an hour, and soon after that I started using the walking stick.
Two other friends, were into natural health in the most extreme way I have ever known. The couple introduced me to many things over the years, some of which I adopted and some I rejected. They were always sure they had found the answer this time--could cure my MS this time. I couldn't possibly list all the different cures or treatments they tried on themselves first. Always certain they had found the answer this time, they were very convincing. Peter, being the more level headed of the two of us, often rejected their ideas before I did. One time I remember being persuaded to drink a cup of water with a teaspoon of garden minerals mixed up in it, (which were purchased from a landscaping yard.) After a while good sense prevailed and I stopped doing that though. For liver cleansing, they used Dr Gerson’s cancer regime of coffee enemas, but one of the most bizarre treatments they tried, which I never for a moment considered, was drinking their own urine.
They did however, in 1996, introduce me to an American company selling vitamins and minerals of a high quality. Notably, they also sold natural progesterone cream under another name. I listened to cassette tapes of Dr John Lee talking about natural progesterone, which were very interesting, and staggeringly enlightening. I was having some mild, but nevertheless aggravating, menopausal symptoms at the time and the progesterone cream made a big difference. I was also happy to know that it was capable of balancing all the hormones in the body, and also increasing bone density. In fact there were very many benefits to using the cream and I still use it today, under the guidance of a GP. Although it was freely available when I started to use it.
I felt so well in ’97 I decided to apply for a part-time job in a baby clinic district near home. I was also working for the Fortitude Valley Child Health Clinic at the time which incorporated the Royal Women's Hospital home visiting program, which I was being trained to do so that I could relieve the sister who was already doing that job. She was a sweet girl and one evening she came to my house and advised me about words and phrases that I needed to use at my interview for the job.
This was the time when we were undergoing all the changes brought on by the Goss Labour government. It was mind blowing. She showed me an 18 page application she had written out for a job. The repetitiveness and the airy fairy wording were phenomenal. Peter had helped me with the written application that I’d put in for my job, and we had used a bullet-point format which meant that I had sent in a fairly brief application. I prepared palm cards with key words for my interview, and faced a panel of three charge nurses. The chairman of the panel told me later that I had topped the interview. I must have done a good job on those fancy words and phrases! But because my written application was so brief, I didn't get the job.
As it turned out, I realised within months that I had been lucky not to get that position. My legs were weakening to the point where I was having bad dreams about coping with daily life. If I worked a day in a baby clinic, I dreaded having to get up from behind the desk. It took all my strength to stay steady--to not look as if I was drunk. One night I dreamt that I was clambering over rocks along the side of a busy highway. I remember the terrible effort, but I also remember how pleased I felt that I could jump from one rock to another. In reality, I could no more clamber over rocks than fly to the moon.
--0--
After my first amateurish quilting effort, a book on colour-wash quilts inspired me to make a quilt for mum. I used a picture as my guide. I lost my temper so many times though, that Peter begged me to do the Beginner's Quilting course. I was determined to finish the quilt once I’d got started anyway, and despite the terrible quality of my sewing, Mum loved her quilt, and still uses it today. The cost of the course was $90, but with Pete's encouragement, I decided to bite the bullet. I loved that course.
Although still driving, on arrival I couldn't carry my sewing machine into the building, and was forced to depend on someone else to carry it from the car and haul it into position for me. They did it willingly, but of course I was embarrassed.
Although my right foot was starting to drop, I still had plenty of strength in it for the sewing machine pedal, (and the car accelerator pedal....Thank goodness!) Eventually though, the foot became so weak that I had to lift it off with my hands under my knee. Many a time the machine went on a wild ride on its own while I struggled to get my foot off the pedal. When it became just too weak to do the job, I pushed the pedal over to the left and used my left foot. It didn't work for driving the car though! And one day while driving home from work, I got too close to the back of another car which pulled up suddenly, and it frightened me half to death. I took to the gravel, struggling to get my foot off the accelerator, and avoided disaster, but I knew then it was time to give driving away.
Anyway I attacked the whole quilting process with zeal and despite the fact that one quilt could take six months or more, I ploughed on and in the end made quite a few quilts.
Down at The Patchwork Tree quilting centre one day when I was lamenting my inadequacies, the manager said to me. "Anything you do, is right." I found that very encouraging, and never forgot what she said.
Friday, 14 September 2012
INTERLUDE
INTERLUDE
Sorry I haven’t got to post any chapters lately. Mum, who is now 99 and in very good health considering, recently had two falls. On top of that, now she has a cold, and I have been somewhat distracted, calling her at the hospital and after her discharge on a daily basis. Tentatively we are making plans for her hundredth birthday in January.
A new chapter to the story is coming soon. Thanks for your patience, Giddy
Sorry I haven’t got to post any chapters lately. Mum, who is now 99 and in very good health considering, recently had two falls. On top of that, now she has a cold, and I have been somewhat distracted, calling her at the hospital and after her discharge on a daily basis. Tentatively we are making plans for her hundredth birthday in January.
A new chapter to the story is coming soon. Thanks for your patience, Giddy
Monday, 10 September 2012
Chapter 45 The Generation Gap
Chapter 45 The Generation Gap
During our daughter’s grade 10 year the nitty-gritty of sex education was explored in their Personal and Spiritual Development class. I was a little taken aback when Steph explained some of the details to me. We had brought up our children to believe that they should only carry on sex after marriage, but the school seemed to take it for granted that all young people would indulge before any commitment to a relationship. It seemed to be taken for granted by the greater population too that it was a way of life before marriage for young people these days.
The teacher pointed out to the students it was important to make sure condoms weren’t perished, and aided by giggling instructions from the boys, described the way they should be applied. Of course the teacher was backed up by general consensus on TV programmes showing sex scenes in explicit detail. There was one thing that struck me, though.
After the class that afternoon when Steph got home from school, she remarked, "Mum, they didn't even say you shouldn't do it; they just assumed you would."
Of course all this free love has had its repercussions, a fact not entirely lost on those of us who make up the older population and the medical profession. Of particular angst to me in current times are the ads on television about herpes: If you are like one in eight of us and have genital herpes; or...anyone can get genital herpes; Excuse me? I think not! Just because something is becoming more common doesn't make it normal.
I've noticed a worrying trend in recent times that if things are getting out of hand, the ‘powers that be’ declare the problem ‘normal,’ therefore acceptable. That way the problem doesn't exist anymore.
Any sort of STD was considered unacceptable in my younger lifetime. Interestingly, multiple sexual partners outside of a brothel were also unheard-of. The medical world didn’t see early signs of cervical cancer in 15,17, or 19-year-old women. Young people were not finding themselves with diseases such as chlamydia, or vaginal herpes.Those were diseases usually only found amongst wayward sailors or occasionally, members of Pop bands. AIDS was rare, not seen in heterosexual communities at first.
Young teens, particularly girls, can turn feral when their world is turned upside down by a confusing social spectrum and contradictory guidance between parents and teachers.
Pete and I struggled with the teenage years of our children like most other parents.
All this time I coped with my parenting problems by talking to my friends at work. Basically, they were someone to bounce things off and they didn't give me advice, but provided support and encouragement.
One of my nursing colleagues said to me one day, "Gayle, you've coped so well with your children. How did you do it?"
"No," I said, "We haven't done particularly well, we've just stumbled our way from one crisis to another. You have to make it up as you go along and rely on your own judgement each time you face a crisis or a problem. And you hope you’re raising your kids to be able to face their problems in life with good judgement. It pays to keep in mind that you are the adult, and they are the children. They’re going to make a few mistakes."
It is unacceptable to blame them for all the problems you have. By the same token it is not the fault of the parents. Often it is a breakdown in communication, and society with all its pressures and influences, must take some of the blame. The teenage years are a difficult time for all young people, and for most parents. Often the parents are also young and may have been ill-advised during their own problematic teenage years. As a parent you must be willing to forgive. You must be willing to be there to support, no matter what, and engage when the opportunity arises. If the problems are insurmountable for the parents, or the teenagers, then professional help may have to be be sought.
Always the experts have said, “Talk to your children.” But it's hard to talk to them when they decide that nothing you have to say is worth listening to.
They deliberately keep out of your presence. They fully believe they know everything anyway, and they seem to have a rock solid belief that their parents must be the worst parents in the whole community! So, communication cannot be maintained when the parties grow apart from one another, or are involved in constant agonising conflict. Basically, that’s at the root of the problem--communication breakdown. Sometimes there's nothing for it but to involve a third party.
One thing I feel strongly about is that the last thing kids need is inconsistency at home. Through the whole torrid time parents should stick closely together, united in their struggles. As a consequence, it brings them closer.
--0--
After University, Steph, always loving variety in her life, went to America to work in the summer camps when she was 19. Continuing on to Holland she spent seven months as an Au Pair. This was hard work, long hours, and for little money; but the way she looked after herself in a foreign country, dealing with a foreign language, was stunning. Not only that but she dealt with minor health problems using basic commonsense knowledge, because she couldn't afford to go to a doctor.
Peter and I devoured her letters from Holland, and always being a keen photographer she came back with a fascinating collection of photos and all sorts of interesting stories.
After returning from a second stint in America she found herself a job as a filing clerk in the x-ray department of a large public hospital, where she eventually met the man she would marry.
By this time she had also completed an Honours degree in human services at Griffith University.
My M.S. always worsened in the heat and at her wedding I struggled to get into Owen’s car, wearing shoes with a small high heel. It was the last time I ever wore heeled shoes, (and they were discarded before the end of the night.) I entered the church with a walking stick, determined not to take the wheeled walker down the aisle.
Mum said sadly, “You poor thing, you’re all twisted up but you try so hard.” I knew then what I must have looked like.
After photos in the church grounds, I was forced to revert to the wheelchair. In church the groom frequently mopped his brow. At the reception at Walkabout Creek the tall, glistening crocquembouche beside a large wooden sculpture reflected our daughter’s desire to be different. We relaxed to the lyrical notes of the harp, delicately played by a young blonde harpist at the beginning of the evening. 100 guests were seated at round tables, with the bridal table in the middle of the room. The bride and groom sat with their attendants and partners. It stayed warm until after 9:30 p.m. when a light drizzle of rain heralded the coming of the cooler weather. I must admit it felt like a reward for all the hard work and anxiety of the previous weeks.
Their first child, a little girl, was born on 03/03/03. Mum came down to stay when the baby was two weeks of age. Stephanie brought her to see us. As the car pulled into the driveway, Mum leapt to her feet and hurried out. Unable to restrain her excitement, she stretched out her arms to take the baby, and clutching her close to her chest returned inside without a word. Her whole focus was on the baby. Steph and I would laugh over it afterwards. Mum had asked no permission, merely hurrying back into her chair, cradling the baby closely in her arms and speaking baby language all the while, close to the little face. This was the first of my grandchildren and my mother was almost as excited as I was. We photographed the three generations. The little one smiled at 2 1/2 weeks.
During our daughter’s grade 10 year the nitty-gritty of sex education was explored in their Personal and Spiritual Development class. I was a little taken aback when Steph explained some of the details to me. We had brought up our children to believe that they should only carry on sex after marriage, but the school seemed to take it for granted that all young people would indulge before any commitment to a relationship. It seemed to be taken for granted by the greater population too that it was a way of life before marriage for young people these days.
The teacher pointed out to the students it was important to make sure condoms weren’t perished, and aided by giggling instructions from the boys, described the way they should be applied. Of course the teacher was backed up by general consensus on TV programmes showing sex scenes in explicit detail. There was one thing that struck me, though.
After the class that afternoon when Steph got home from school, she remarked, "Mum, they didn't even say you shouldn't do it; they just assumed you would."
Of course all this free love has had its repercussions, a fact not entirely lost on those of us who make up the older population and the medical profession. Of particular angst to me in current times are the ads on television about herpes: If you are like one in eight of us and have genital herpes; or...anyone can get genital herpes; Excuse me? I think not! Just because something is becoming more common doesn't make it normal.
I've noticed a worrying trend in recent times that if things are getting out of hand, the ‘powers that be’ declare the problem ‘normal,’ therefore acceptable. That way the problem doesn't exist anymore.
Any sort of STD was considered unacceptable in my younger lifetime. Interestingly, multiple sexual partners outside of a brothel were also unheard-of. The medical world didn’t see early signs of cervical cancer in 15,17, or 19-year-old women. Young people were not finding themselves with diseases such as chlamydia, or vaginal herpes.Those were diseases usually only found amongst wayward sailors or occasionally, members of Pop bands. AIDS was rare, not seen in heterosexual communities at first.
Young teens, particularly girls, can turn feral when their world is turned upside down by a confusing social spectrum and contradictory guidance between parents and teachers.
Pete and I struggled with the teenage years of our children like most other parents.
All this time I coped with my parenting problems by talking to my friends at work. Basically, they were someone to bounce things off and they didn't give me advice, but provided support and encouragement.
One of my nursing colleagues said to me one day, "Gayle, you've coped so well with your children. How did you do it?"
"No," I said, "We haven't done particularly well, we've just stumbled our way from one crisis to another. You have to make it up as you go along and rely on your own judgement each time you face a crisis or a problem. And you hope you’re raising your kids to be able to face their problems in life with good judgement. It pays to keep in mind that you are the adult, and they are the children. They’re going to make a few mistakes."
It is unacceptable to blame them for all the problems you have. By the same token it is not the fault of the parents. Often it is a breakdown in communication, and society with all its pressures and influences, must take some of the blame. The teenage years are a difficult time for all young people, and for most parents. Often the parents are also young and may have been ill-advised during their own problematic teenage years. As a parent you must be willing to forgive. You must be willing to be there to support, no matter what, and engage when the opportunity arises. If the problems are insurmountable for the parents, or the teenagers, then professional help may have to be be sought.
Always the experts have said, “Talk to your children.” But it's hard to talk to them when they decide that nothing you have to say is worth listening to.
They deliberately keep out of your presence. They fully believe they know everything anyway, and they seem to have a rock solid belief that their parents must be the worst parents in the whole community! So, communication cannot be maintained when the parties grow apart from one another, or are involved in constant agonising conflict. Basically, that’s at the root of the problem--communication breakdown. Sometimes there's nothing for it but to involve a third party.
One thing I feel strongly about is that the last thing kids need is inconsistency at home. Through the whole torrid time parents should stick closely together, united in their struggles. As a consequence, it brings them closer.
--0--
After University, Steph, always loving variety in her life, went to America to work in the summer camps when she was 19. Continuing on to Holland she spent seven months as an Au Pair. This was hard work, long hours, and for little money; but the way she looked after herself in a foreign country, dealing with a foreign language, was stunning. Not only that but she dealt with minor health problems using basic commonsense knowledge, because she couldn't afford to go to a doctor.
Peter and I devoured her letters from Holland, and always being a keen photographer she came back with a fascinating collection of photos and all sorts of interesting stories.
After returning from a second stint in America she found herself a job as a filing clerk in the x-ray department of a large public hospital, where she eventually met the man she would marry.
By this time she had also completed an Honours degree in human services at Griffith University.
My M.S. always worsened in the heat and at her wedding I struggled to get into Owen’s car, wearing shoes with a small high heel. It was the last time I ever wore heeled shoes, (and they were discarded before the end of the night.) I entered the church with a walking stick, determined not to take the wheeled walker down the aisle.
Mum said sadly, “You poor thing, you’re all twisted up but you try so hard.” I knew then what I must have looked like.
After photos in the church grounds, I was forced to revert to the wheelchair. In church the groom frequently mopped his brow. At the reception at Walkabout Creek the tall, glistening crocquembouche beside a large wooden sculpture reflected our daughter’s desire to be different. We relaxed to the lyrical notes of the harp, delicately played by a young blonde harpist at the beginning of the evening. 100 guests were seated at round tables, with the bridal table in the middle of the room. The bride and groom sat with their attendants and partners. It stayed warm until after 9:30 p.m. when a light drizzle of rain heralded the coming of the cooler weather. I must admit it felt like a reward for all the hard work and anxiety of the previous weeks.
Their first child, a little girl, was born on 03/03/03. Mum came down to stay when the baby was two weeks of age. Stephanie brought her to see us. As the car pulled into the driveway, Mum leapt to her feet and hurried out. Unable to restrain her excitement, she stretched out her arms to take the baby, and clutching her close to her chest returned inside without a word. Her whole focus was on the baby. Steph and I would laugh over it afterwards. Mum had asked no permission, merely hurrying back into her chair, cradling the baby closely in her arms and speaking baby language all the while, close to the little face. This was the first of my grandchildren and my mother was almost as excited as I was. We photographed the three generations. The little one smiled at 2 1/2 weeks.
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