The Advil/Morphine combo worked well for me today, on top of another massage. I have been sitting up and pain free for 11 hours.
I am resisting writing. It is getting late and I have no burning topic, nor even a: “Well I meant to write about this a few days ago!” My entire focus is on rest, or getting ready for writing on Monday, or the Wisdom Weekend 5 – where I was most of today, or the MFC Board meeting tomorrow, or supporting BW for a month (a bit of cash there), or how to eat right this weekend on very little money. Busy, busy, busy mind.
But writing this blog is for my expression. What is there to express?
I was impressed and disappointed this morning on how badly I wanted to just get on with my day and not bother with my acupuncture. When Jen was working on me I could barely pay any attention to her. I regretted this and told her so, but my mind was and is FULL of what I want to do NOW and where I want to go NEXT. When I showed up for the City Team meeting at 1:00pm most of the thirty plus people there weren’t expecting me even though I had sent in the official notice that I would be. The general impression was that I was too sick to get well so fast. My circle has the same impression.
Why am I supposed to be sick for that long?
Maybe my body isn’t big enough to stay sick for a long time. Two days ago I could sit up for five hours. Yesterday it was for ten. Today it was for eleven. Somehow in others’ minds I MUST be heading for a disaster. Perhaps I am, but to me it seems more like I am heading for my chosen future.
Clearly I am not “normal”. I believe that these past eight weeks have left me with a great deal of comfort and there are several dimensions of this fact. Literally I have (at least some of the time) much more comfort in my body. I can laugh at my moodiness and be OK with how much I irritate others. In fact, in the space of that comfort more people are confronting me with whatever is annoying to them. This has opened a space for clearing up misunderstandings and for building stronger agreements.
I realized today that the ROM wants me because, in their “eyes”, I am disabled and I fit very powerfully into their mandate to be accessible. However, in my own understanding I am not disabled. I am an artist who is committed to building peace and inclusion in the world. Before now I would have wanted to turn them around or turn them down - to struggle to convince them that I have nothing to do with “disability”.
Now I see that it doesn’t matter. Naturally they see me as disabled. It is the perfect place to start our relationship because the reality is - that is what they see.
Something will occur for the staff of the ROM and for many others simply because I do this. I don’t have to make any particular outcome happen. There will be some level of transformation and inclusion simply because I am openly engaging the process.
How can I be sick when I am having such a great life – today and tomorrow?
Friday, December 3, 2010
Thursday, December 2, 2010
December 2, 2010
Gloria and I went to see Wasteland, (Wasteland.com), at the TIFF Bell Lightbox on King Street. There is SO much going on there that Gloria and I are considering getting memberships so to be able to see movies and exhibits for less. It would be a way to reinforce my taking off a day a week to sustain my own wellbeing – and a step up from Farmville!
The movie follows a Brazilian artist who transforms people’s lives as together they turn garbage into art that represents their lives, capacities and dreams.
Afterward, in the exceptionally well designed café that serves the Lightbox, Gloria recorded my words:
“What struck me was that after all the years, as the camera man said, the people who were the garbage pickers were able to lift themselves out from where they were when they saw themselves as artists.
When I became an artist it was that – it didn’t happen all at once, but it happened like that. The process of realizing ever so slowly that I am an artist has given me a place to be, to look at all the other stuff – I’m not trapped being an advocate, fighting to be an advocate. Do you remember how angry and frustrated I got saying over and over again that there is no disability? Saying I am not disabled over and over again created the being of disabled. You can’t ever get out of it.
What if God created art so we can have a place to be so that we can get out of our traps?
When I’m at Laser Eagles and see how the other artists improve in their lives – I realize it’s a wonderful moment when you discover you’re an artist.”
There is a powerful moment when one of the pickers teaches the significance of each moment, each bit of garbage, each person. He is teaching that it is important to recycle not just most cans but ALL cans. He says: “99 is not 100.”
I saw myself in the pickers. I saw the pride, the integrity and the trap. Even to this day I live in a world that sees different capacity as “trash”. I saw that art provided them with a different place to stand and a different perspective wherein they could exercise their natural power.
Can my exhibit provide such a transcendent place?
I am struggling within myself to find images and themes that will open such a powerful space that real life will be present and the rigid hierarchical structure of the ROM will not be able obliterate it. How can such a static, ephemeral moment as walking through an exhibition of my art on the way to the dinosaurs cause a transformative encounter with Inclusion?
There were other pleasures in the experience today. Most of the Lightbox spaces, and also the café within it, are simple and welcoming and also use light and sound to create intimate, comfortable and welcoming ambiance. At the end of the movie I was dancing – for the second time this week!
On another note I added Advil back into my pain management mix today and I have sat up for ten hours! I am hopeful that I have found another clue.
The movie follows a Brazilian artist who transforms people’s lives as together they turn garbage into art that represents their lives, capacities and dreams.
Afterward, in the exceptionally well designed café that serves the Lightbox, Gloria recorded my words:
“What struck me was that after all the years, as the camera man said, the people who were the garbage pickers were able to lift themselves out from where they were when they saw themselves as artists.
When I became an artist it was that – it didn’t happen all at once, but it happened like that. The process of realizing ever so slowly that I am an artist has given me a place to be, to look at all the other stuff – I’m not trapped being an advocate, fighting to be an advocate. Do you remember how angry and frustrated I got saying over and over again that there is no disability? Saying I am not disabled over and over again created the being of disabled. You can’t ever get out of it.
What if God created art so we can have a place to be so that we can get out of our traps?
When I’m at Laser Eagles and see how the other artists improve in their lives – I realize it’s a wonderful moment when you discover you’re an artist.”
There is a powerful moment when one of the pickers teaches the significance of each moment, each bit of garbage, each person. He is teaching that it is important to recycle not just most cans but ALL cans. He says: “99 is not 100.”
I saw myself in the pickers. I saw the pride, the integrity and the trap. Even to this day I live in a world that sees different capacity as “trash”. I saw that art provided them with a different place to stand and a different perspective wherein they could exercise their natural power.
Can my exhibit provide such a transcendent place?
I am struggling within myself to find images and themes that will open such a powerful space that real life will be present and the rigid hierarchical structure of the ROM will not be able obliterate it. How can such a static, ephemeral moment as walking through an exhibition of my art on the way to the dinosaurs cause a transformative encounter with Inclusion?
There were other pleasures in the experience today. Most of the Lightbox spaces, and also the café within it, are simple and welcoming and also use light and sound to create intimate, comfortable and welcoming ambiance. At the end of the movie I was dancing – for the second time this week!
On another note I added Advil back into my pain management mix today and I have sat up for ten hours! I am hopeful that I have found another clue.
Wednesday, December 1, 2010
December 1, 2010
Today I am thinking about money. ODSP cut me off last month – again – and although I was able to get reinstated with no great difficulty the deposit did not arrive in my bank until this morning. I would have been in the position of having to draw further on my line of credit to pay my rent if it had not come when it did.
As a child I considered myself rich, but I was very distrustful of money. In grade three I was “befriended” by a girl who was by far the dirtiest and most unsavoury character I had met up until that point. I was in a way her captive audience as I was wheeled about in those days in a manual wheelchair over which I had no control. I imagine that adults, including my parents, threw us together because neither of us had friends and they felt we deserved each other. One day Mother gave me a quarter and sent Darlene and I off to the library to register and get a book. Along the way Darlene took the quarter and with that sort of persuasion that goes: “You really want to do this, don’t you!” bought ice cream. I don’t recall eating any ice cream or what lie we concocted to explain why we came back without a book. I do recall the fear, intimidation and disgust.
As a young teenager my aunts and uncles, particularly Uncle Ted, would give my two brothers and myself dimes and quarters whenever they visited. I couldn’t get out to spend any of it and I enjoyed hoarding it in any case, so the stash in my underwear drawer grew to be $20.00 more than once. However, both my parents would “borrow” from my wallet with promises to repay. Often they didn’t keep those promises.
At sixteen the government of Ontario decided to give me a “Disabled Child Benefit” which meant that a small amount of money went to my parents on my behalf – something like $100 a month. When this started my Mother told me that I was essentially paying rent now and that I could ask for some things to be done differently. After that moment nothing changed and I never saw any part of the money either.
I know now that my parents paid out lots of money on my behalf and that they often struggled financially especially in the early years of their marriage. There is no person more generous than my Father is and my Mother was. These stories come to mind, not to put anyone down, least of all my parents, but by way of seeing why money means so little to me. I think I basically learned that money could get me into real trouble and that it never really belonged to me in any case so why bother thinking too much about it.
When I went to university the situation changed radically. First, I had a scholarship and secondly I had a benefit under the vocational rehabilitation section of the welfare department with “disabled adults” in its mandate. Thirdly, I had a different allowance from the same Ministry which gave me the capacity to hire students for a few hours every day to give me personal assistance. I had the great good fortune to be supervised by a social worker who interpreted her regulations in the most generous way possible. This meant that even when I worked during summers between terms, or sometimes mid-school year my benefits were never cut. I paid my own tuition, living costs, other people’s and my own beer and had friends!
Skip the dark years of the nursing home and chronic care hospital. $60 a month from the government as a “comfort allowance”. Even then I earned some $$’s on “the side”.
When I fundraised for, founded and became the first Coordinator of Special Services for Handicapped Students in 1977 I paid myself $19,000 a year. The University doubled the next Coordinator’s salary.
I did alright – never brilliantly – in the financial world until 2006 when I decided to retire from a job within which I could do nothing that made me happy. I had savings, a small grant from the Marsha Forest Centre, a small pension and I continued to have self employed income. I co-owned a house and three times renegotiated the mortgage over ten years to give myself another pot of money to draw on.
I left the job in 2006 to give myself a fighting chance to do what I really wanted to do with my life. That turned into being an artist and founding the World Peace through Inclusive Transformation.
I have NO regrets and I am on the edge of bankruptcy. For fourteen months I have marvelled month by month that I have found ways to pay my rent.
I wonder, and my friends do too, what happened to my capacity to have money. Now that I am writing this I see that I may have returned to thinking that money is something I have no control over and that it would pervert me through the Darlene’s of the world if I had it. But I am not eight and I have a very different perspective on what can make someone choose to be a dirty thief. I owe Darlene, her mother and mine an apology.
Now, let’s make some cash!
As a child I considered myself rich, but I was very distrustful of money. In grade three I was “befriended” by a girl who was by far the dirtiest and most unsavoury character I had met up until that point. I was in a way her captive audience as I was wheeled about in those days in a manual wheelchair over which I had no control. I imagine that adults, including my parents, threw us together because neither of us had friends and they felt we deserved each other. One day Mother gave me a quarter and sent Darlene and I off to the library to register and get a book. Along the way Darlene took the quarter and with that sort of persuasion that goes: “You really want to do this, don’t you!” bought ice cream. I don’t recall eating any ice cream or what lie we concocted to explain why we came back without a book. I do recall the fear, intimidation and disgust.
As a young teenager my aunts and uncles, particularly Uncle Ted, would give my two brothers and myself dimes and quarters whenever they visited. I couldn’t get out to spend any of it and I enjoyed hoarding it in any case, so the stash in my underwear drawer grew to be $20.00 more than once. However, both my parents would “borrow” from my wallet with promises to repay. Often they didn’t keep those promises.
At sixteen the government of Ontario decided to give me a “Disabled Child Benefit” which meant that a small amount of money went to my parents on my behalf – something like $100 a month. When this started my Mother told me that I was essentially paying rent now and that I could ask for some things to be done differently. After that moment nothing changed and I never saw any part of the money either.
I know now that my parents paid out lots of money on my behalf and that they often struggled financially especially in the early years of their marriage. There is no person more generous than my Father is and my Mother was. These stories come to mind, not to put anyone down, least of all my parents, but by way of seeing why money means so little to me. I think I basically learned that money could get me into real trouble and that it never really belonged to me in any case so why bother thinking too much about it.
When I went to university the situation changed radically. First, I had a scholarship and secondly I had a benefit under the vocational rehabilitation section of the welfare department with “disabled adults” in its mandate. Thirdly, I had a different allowance from the same Ministry which gave me the capacity to hire students for a few hours every day to give me personal assistance. I had the great good fortune to be supervised by a social worker who interpreted her regulations in the most generous way possible. This meant that even when I worked during summers between terms, or sometimes mid-school year my benefits were never cut. I paid my own tuition, living costs, other people’s and my own beer and had friends!
Skip the dark years of the nursing home and chronic care hospital. $60 a month from the government as a “comfort allowance”. Even then I earned some $$’s on “the side”.
When I fundraised for, founded and became the first Coordinator of Special Services for Handicapped Students in 1977 I paid myself $19,000 a year. The University doubled the next Coordinator’s salary.
I did alright – never brilliantly – in the financial world until 2006 when I decided to retire from a job within which I could do nothing that made me happy. I had savings, a small grant from the Marsha Forest Centre, a small pension and I continued to have self employed income. I co-owned a house and three times renegotiated the mortgage over ten years to give myself another pot of money to draw on.
I left the job in 2006 to give myself a fighting chance to do what I really wanted to do with my life. That turned into being an artist and founding the World Peace through Inclusive Transformation.
I have NO regrets and I am on the edge of bankruptcy. For fourteen months I have marvelled month by month that I have found ways to pay my rent.
I wonder, and my friends do too, what happened to my capacity to have money. Now that I am writing this I see that I may have returned to thinking that money is something I have no control over and that it would pervert me through the Darlene’s of the world if I had it. But I am not eight and I have a very different perspective on what can make someone choose to be a dirty thief. I owe Darlene, her mother and mine an apology.
Now, let’s make some cash!
Tuesday, November 30, 2010
The Last Day of November 2010
In my experience it is not good to rush some creative moments. There are at least two aspects of this. The first is that I can get my mind set that a certain set of circumstances are going to be the context for the work only to have someone change something fundamental – the budget, timeline, venu, etc. With so many players in the piece at the ROM I sense that this is about 100% likely to happen in the next few days.
Secondly and most significantly, listening to that other space is essential – the space beyond my personal mind where better answers to good questions come from. A few “sleeps” improves the quality of what I’m up to immeasurably.
So I am quite the procrastinator in some areas of my life – like in producing a creative brief for the May exhibit. I do know that I must produce a good draft on Monday or risk putting the whole show in jeopardy.
I was whimsically considering how my mind distracts me when this invisible process is unfolding. There are numbers – counting things. For example, I noticed many days ago that these writings go from page 1 to page 2 somewhere around lines 44 to 46. So I will look down occasionally (like now!), see that I am at line 20 and calculate that I’m about 48% of the way to being able to call this a two page document. If I’m not too excited about what I’m writing I do more calculations – go figure (joke!)
Then there are a growing variety of computer games that I can play using my Morse Code interface. Freecell is my stand-by since I stop using a Mac (traitor!) a few years back. Macs have a built in jigsaw puzzle program where you can insert one of your own photos or drawings. I miss that distraction in a big way.
Recently I was introduced to Farmville on Facebook. That promises to be a very effective tool of distraction! A player even gets ribbons for ever higher levels of time wasting behaviour.
I used to be an avid builder of Sim Cities. When I built my first one I sat for 5 hours straight thinking I had been at it for maybe 1 ½. No wonder my aging butt hurts so much! The Windows Vista OS doesn’t run Sim programs, much to my despair. Just what was the point of Vista anyway? Last week Nick introduced me to a program called Virtual Computer that partitions part of the hard drive and allows the owner to use an older Windows OS. I have downloaded Sim Towers, but not yet actually used it. Farmville!
I do not have a TV as I consider the whole thing to be designed to make one stupid. Nevertheless, Nick eagerly downloads episodes of House for me. One show lasts just as long as his evening break. It is to our mutual advantage that I have become rather interested in this melodramatic hospital show.
And the most effective tool of procrastination of all is to do something else that I have been meaning to get around to but: “haven’t had the time”. Just as some suddenly discover a closet that NEEDS reorganizing the day before a big exam, I have a storehouse of old e-mails and other writings that can easily become suddenly urgent and take up a couple of hours of creative space.
This is line 5 on page 2! Good night!
Secondly and most significantly, listening to that other space is essential – the space beyond my personal mind where better answers to good questions come from. A few “sleeps” improves the quality of what I’m up to immeasurably.
So I am quite the procrastinator in some areas of my life – like in producing a creative brief for the May exhibit. I do know that I must produce a good draft on Monday or risk putting the whole show in jeopardy.
I was whimsically considering how my mind distracts me when this invisible process is unfolding. There are numbers – counting things. For example, I noticed many days ago that these writings go from page 1 to page 2 somewhere around lines 44 to 46. So I will look down occasionally (like now!), see that I am at line 20 and calculate that I’m about 48% of the way to being able to call this a two page document. If I’m not too excited about what I’m writing I do more calculations – go figure (joke!)
Then there are a growing variety of computer games that I can play using my Morse Code interface. Freecell is my stand-by since I stop using a Mac (traitor!) a few years back. Macs have a built in jigsaw puzzle program where you can insert one of your own photos or drawings. I miss that distraction in a big way.
Recently I was introduced to Farmville on Facebook. That promises to be a very effective tool of distraction! A player even gets ribbons for ever higher levels of time wasting behaviour.
I used to be an avid builder of Sim Cities. When I built my first one I sat for 5 hours straight thinking I had been at it for maybe 1 ½. No wonder my aging butt hurts so much! The Windows Vista OS doesn’t run Sim programs, much to my despair. Just what was the point of Vista anyway? Last week Nick introduced me to a program called Virtual Computer that partitions part of the hard drive and allows the owner to use an older Windows OS. I have downloaded Sim Towers, but not yet actually used it. Farmville!
I do not have a TV as I consider the whole thing to be designed to make one stupid. Nevertheless, Nick eagerly downloads episodes of House for me. One show lasts just as long as his evening break. It is to our mutual advantage that I have become rather interested in this melodramatic hospital show.
And the most effective tool of procrastination of all is to do something else that I have been meaning to get around to but: “haven’t had the time”. Just as some suddenly discover a closet that NEEDS reorganizing the day before a big exam, I have a storehouse of old e-mails and other writings that can easily become suddenly urgent and take up a couple of hours of creative space.
This is line 5 on page 2! Good night!
Monday, November 29, 2010
November 29, 2010
Today brought the first meeting with the ROM.
Mike Skubic, Michael Rubenfeld and I with Sarah Garton Stanley on a speaker phone met six officials of the museum in a huge board room after passing through two sets of secured entrances. It left me feeling a little like Bambi meeting Godzilla, but not too much. The gathering was still very much about me, my art, the play and my legacy and I was very much being listened to and taken seriously.
A few moments were nearly incomprehensible to me – like when I was asked what the insurable value of my art would be. So many of my pieces are on dollar store canvas boards. Most have been produced in less than two hours. The largest price I have ever earned was $500. Insurable value?
The meeting was useful for us to get our bearings. Godzilla has traditions, policies, internal politics, union reinforced job descriptions, rigid time schedules and really bad coffee. We have to learn the ropes. Inclusion isn’t about “doing our own thing” – it is about seemingly incompatible entities finding ways to authentically express their essences while being mutually supportive and, in so doing, creating space for the unimagined to emerge.
It was good to see the space within which the 3 to 6 month exhibit will take place. It is a relatively small but well lit and not to noisy room. It really is an anteroom, along the pathway to the dinosaurs. This means that there will always be lots of traffic through the room but that many “visitors” will not initially have the inclination to stop.
At this juncture, because of this pathway, I am imaging designing a “highway” where signs will be posted that there is to be no stopping due to dangerous circumstances. At the same time there can also be more subtle invitations to stop and stay awhile, to discover something magical about life and yourself!
I don’t feel that this exhibit will be as much about my art as about the various stages I have been through in developing my own ideas about Inclusion. My art will be one vehicle of several used to get the ideas across. We will be using the play, video and I hope something interactive that pulls people into the exploration. I also hope that the exhibit can appeal to children and teenagers. Currently the ROM officials mainly talked about children as if the main concerns about them are their safety and that they might destroy stuff!
There is no sense at all of what, if any, financial opportunity there is in this. I attempted to express that to do this well I, and others, would have to give up other opportunities to make money. The process does not reveal anything about money at this point. First things first in the ROM’s way of doing things is to produce a document – a proposal with a creative theme – that gives them a sense of what they will be committing to. They get to say back if it’s doable. They say back what they are willing to do and not do. To me it’s like negotiating in the dark, but at least after today, it’s a little less dark.
I am in a very strange space indeed. On the one hand my creative juices are being called on like never before. On the other I am dollars away from bankruptcy, only weeks away from serious illness and suddenly playing with the “big boys” – people who have the capacity to take my legacy very far indeed but also who have very different agendas than mine.
Mike Skubic, Michael Rubenfeld and I with Sarah Garton Stanley on a speaker phone met six officials of the museum in a huge board room after passing through two sets of secured entrances. It left me feeling a little like Bambi meeting Godzilla, but not too much. The gathering was still very much about me, my art, the play and my legacy and I was very much being listened to and taken seriously.
A few moments were nearly incomprehensible to me – like when I was asked what the insurable value of my art would be. So many of my pieces are on dollar store canvas boards. Most have been produced in less than two hours. The largest price I have ever earned was $500. Insurable value?
The meeting was useful for us to get our bearings. Godzilla has traditions, policies, internal politics, union reinforced job descriptions, rigid time schedules and really bad coffee. We have to learn the ropes. Inclusion isn’t about “doing our own thing” – it is about seemingly incompatible entities finding ways to authentically express their essences while being mutually supportive and, in so doing, creating space for the unimagined to emerge.
It was good to see the space within which the 3 to 6 month exhibit will take place. It is a relatively small but well lit and not to noisy room. It really is an anteroom, along the pathway to the dinosaurs. This means that there will always be lots of traffic through the room but that many “visitors” will not initially have the inclination to stop.
At this juncture, because of this pathway, I am imaging designing a “highway” where signs will be posted that there is to be no stopping due to dangerous circumstances. At the same time there can also be more subtle invitations to stop and stay awhile, to discover something magical about life and yourself!
I don’t feel that this exhibit will be as much about my art as about the various stages I have been through in developing my own ideas about Inclusion. My art will be one vehicle of several used to get the ideas across. We will be using the play, video and I hope something interactive that pulls people into the exploration. I also hope that the exhibit can appeal to children and teenagers. Currently the ROM officials mainly talked about children as if the main concerns about them are their safety and that they might destroy stuff!
There is no sense at all of what, if any, financial opportunity there is in this. I attempted to express that to do this well I, and others, would have to give up other opportunities to make money. The process does not reveal anything about money at this point. First things first in the ROM’s way of doing things is to produce a document – a proposal with a creative theme – that gives them a sense of what they will be committing to. They get to say back if it’s doable. They say back what they are willing to do and not do. To me it’s like negotiating in the dark, but at least after today, it’s a little less dark.
I am in a very strange space indeed. On the one hand my creative juices are being called on like never before. On the other I am dollars away from bankruptcy, only weeks away from serious illness and suddenly playing with the “big boys” – people who have the capacity to take my legacy very far indeed but also who have very different agendas than mine.
Sunday, November 28, 2010
November 28, 2010
I had the best dinner tonight!
Over these last two months food and beverage have been a constant concern. My recovery from the infection, my loss of bladder function and the effort to live creatively with pain (and increasingly less pain!) all depended in some way on what I eat.
During the hospital days and immediately thereafter the concern was THAT I eat. My various accommodations to swallowing difficulties, nausea from pain medication and the infection left me dangerously malnourished. By the way malnourishment is a theme that ran through my transition from Cycle 1 to Cycle 2. Hmm!
It was truly comforting deep in the hospital days to have Stanley, the nutrition researcher, glow over practically every mouthful I took and to have him rejoice as the quantities of food I ingested increased day by day.
As soon as I got home my friends, especially Gloria, filled my kitchen and freezer with very excellent food – so much that six weeks later I still have some of it!
With Jen’s guidance it soon became apparent that I needed to, and actually wanted to, shift what I consider to be an ordinary day’s way of eating. I literally felt like I was starving for the first few weeks and that certainly helped my motivation to try eating differently. This was boosted by the realization that different habits would let me stop using those foul laxatives!!
The fundamental problem was that any pain medication that works for me also slows my bowels, creating the blockage that interferes with my bladder (and shut it down for a month!) thus increasing the pain and driving up the use of medication, which slows down my…..
The three necessities were to eliminate gluten, increase noncaffeinated fluids and get more fibre into me. As straight forward as this may sound there are tricky conundrums, such as that oatmeal, though high in fibre is also high in gluten, as is chicken – the one meat my friends (not Gloria!) most want to provide. I have never been a big vegetable eater and now my limitations in chewing and swallowing eliminate any chance of salads. Day by day I found better combinations AND experimented with how much of my old habits (cheese anyone) were tolerable (not much!)
I got a slow cooker, discovered congee, started to carry a thermos of herbal tea and made many, many other changes.
It has become clear that it is useless to go to the Food Bank because everything they have is no longer food to me – wheat pastas, hot dogs, milk, etc.
Like everybody else I exist in a cultural pattern and such a drastic change has been confronting along with welcome. I am basically British in heritage and inclination. The first time I went to my ancestral homeland, England, I was amazed and awed that I was offered cream on nearly everything I ate. After a few days I reconnected with memories of my Mother’s cooking – stewed hamburger, cornflakes and tuna fish, boiled cod – and I realized that in the English soul food is fundamentally brown. That is, the colour of British food varies from the white and brown of crusty bread, through the cream to beige of fish and chips, puddings and pasties, to the deep brown of sausages, burnt toast, gravy and blood pudding.
Tonight, in complete agreement with food that works for me, I had roast beef (brown), potatoes and onions baked with a rosemary dressing (lighter brown), sauerkraut (beige), pumpkin pie (orangy brown) and lemon herbal tea (yellowy brown).
I am full and in heaven!
Over these last two months food and beverage have been a constant concern. My recovery from the infection, my loss of bladder function and the effort to live creatively with pain (and increasingly less pain!) all depended in some way on what I eat.
During the hospital days and immediately thereafter the concern was THAT I eat. My various accommodations to swallowing difficulties, nausea from pain medication and the infection left me dangerously malnourished. By the way malnourishment is a theme that ran through my transition from Cycle 1 to Cycle 2. Hmm!
It was truly comforting deep in the hospital days to have Stanley, the nutrition researcher, glow over practically every mouthful I took and to have him rejoice as the quantities of food I ingested increased day by day.
As soon as I got home my friends, especially Gloria, filled my kitchen and freezer with very excellent food – so much that six weeks later I still have some of it!
With Jen’s guidance it soon became apparent that I needed to, and actually wanted to, shift what I consider to be an ordinary day’s way of eating. I literally felt like I was starving for the first few weeks and that certainly helped my motivation to try eating differently. This was boosted by the realization that different habits would let me stop using those foul laxatives!!
The fundamental problem was that any pain medication that works for me also slows my bowels, creating the blockage that interferes with my bladder (and shut it down for a month!) thus increasing the pain and driving up the use of medication, which slows down my…..
The three necessities were to eliminate gluten, increase noncaffeinated fluids and get more fibre into me. As straight forward as this may sound there are tricky conundrums, such as that oatmeal, though high in fibre is also high in gluten, as is chicken – the one meat my friends (not Gloria!) most want to provide. I have never been a big vegetable eater and now my limitations in chewing and swallowing eliminate any chance of salads. Day by day I found better combinations AND experimented with how much of my old habits (cheese anyone) were tolerable (not much!)
I got a slow cooker, discovered congee, started to carry a thermos of herbal tea and made many, many other changes.
It has become clear that it is useless to go to the Food Bank because everything they have is no longer food to me – wheat pastas, hot dogs, milk, etc.
Like everybody else I exist in a cultural pattern and such a drastic change has been confronting along with welcome. I am basically British in heritage and inclination. The first time I went to my ancestral homeland, England, I was amazed and awed that I was offered cream on nearly everything I ate. After a few days I reconnected with memories of my Mother’s cooking – stewed hamburger, cornflakes and tuna fish, boiled cod – and I realized that in the English soul food is fundamentally brown. That is, the colour of British food varies from the white and brown of crusty bread, through the cream to beige of fish and chips, puddings and pasties, to the deep brown of sausages, burnt toast, gravy and blood pudding.
Tonight, in complete agreement with food that works for me, I had roast beef (brown), potatoes and onions baked with a rosemary dressing (lighter brown), sauerkraut (beige), pumpkin pie (orangy brown) and lemon herbal tea (yellowy brown).
I am full and in heaven!
Saturday, November 27, 2010
November 27, 2010
Once upon a time according to the calendar above my bed this was going to be a “do nothing” day. Ha, ha. I am busy dealing with contractual and fundraising issues that have already arisen days before my first official meeting with the ROM, and the shock to some of this sudden apparent change of plans.
I am not blaming anyone who thinks I am unreliable due to this sudden shift. I COULD have said “No” to the ROM. I could have said: “Sorry, I have been busy creating a very different spring, and I won’t have time for you.” I didn’t.
Anyway, enough of that. Nothing is “real” until contracts are signed and until then the emotional energy is best directed elsewhere, in my opinion.
So I went dancing.
There is an annual party put on by and for caregivers who are mostly women and mainly Philippino domestics who are intent on getting landed immigrant status in Canada while sending as much money home as possible to bring family members here. Another typical scenario is that they are saving to buy a home in the Philippines. I got to know several such people through a long term friendship with a man – Tim (now pronounced “Teem” since he married such a caregiver) who has a lifetime commitment to providing good support to vulnerable people.
I am aware that the situation surrounding “imported” caregivers is fraught with abuses and fundamentally is established to put these people at an economic disadvantage. However I have never met such a person who wasn’t enthusiastic about the arrangement. Those I have met seem to have been planning since early teenage to become either nurses or caregivers, to marry a man who will follow a similar path but in Saudia Arabia or Hong Kong, to meet up with him for six weeks every two years, and otherwise work six days a week and go to evangelistic church then party on the seventh. Five nights a week caregivers sleep at the “employer’s”, and on the other two nights they sleep two women to a bed in a two bedroom, eight person apartment.
It’s not an arrangement that many Canadians can fathom as a choice. Since running across this sub-culture I have marvelled.
One clear aspect of this lifestyle is that the women are very close to each other, hugging and kissing openly and frequently, dressing for each other – tonight they held a beauty pageant reminiscent of the “meat market” shows long out of favour in Canadian Caucasian culture – and paying much less attention to “eligible” men than I would expect in my familiar circles.
When they party they bring home cooked food and eat extravagantly, they sing and they dance – mostly with each other although men are not obviously excluded.
I love to dance when people are not coupling. When people are dancing in pairs moving a wheelchair on the dance floor can be an awkward and lonely effort. When it’s more free form, my presence seems to give people permission to strut their stuff in any way they can and to have a good time. People will try me out in ones or twos, doing their personal gyration for a short while, then move on. In the general moving on I get to go from person to person too, which is way easier to do in a wheelchair and more fun anyway to me.
Three times I have successfully done the couple thing on the dance floor, twice with a man. One guy and the woman are trained dancers, and all moulded their dance steps to the movements a wheelchair can actually do. I was able to keep up the dance in close “formation” for more than an hour – a feat of tremendous stamina and exhilaration for me and my partners.
I rarely get to dance. It’s something I love to do. Occasionally I remember and take steps to find an accessible place. Typically it’s too expensive or fixated on couple style dancing and I “forget” to pursue this pleasure.
But tonight I danced with Philippino women (and Teem). I had a great time. It is good to move my sore body again and to lose myself in the beat. It is a way to feel that I am “me”.
I am not blaming anyone who thinks I am unreliable due to this sudden shift. I COULD have said “No” to the ROM. I could have said: “Sorry, I have been busy creating a very different spring, and I won’t have time for you.” I didn’t.
Anyway, enough of that. Nothing is “real” until contracts are signed and until then the emotional energy is best directed elsewhere, in my opinion.
So I went dancing.
There is an annual party put on by and for caregivers who are mostly women and mainly Philippino domestics who are intent on getting landed immigrant status in Canada while sending as much money home as possible to bring family members here. Another typical scenario is that they are saving to buy a home in the Philippines. I got to know several such people through a long term friendship with a man – Tim (now pronounced “Teem” since he married such a caregiver) who has a lifetime commitment to providing good support to vulnerable people.
I am aware that the situation surrounding “imported” caregivers is fraught with abuses and fundamentally is established to put these people at an economic disadvantage. However I have never met such a person who wasn’t enthusiastic about the arrangement. Those I have met seem to have been planning since early teenage to become either nurses or caregivers, to marry a man who will follow a similar path but in Saudia Arabia or Hong Kong, to meet up with him for six weeks every two years, and otherwise work six days a week and go to evangelistic church then party on the seventh. Five nights a week caregivers sleep at the “employer’s”, and on the other two nights they sleep two women to a bed in a two bedroom, eight person apartment.
It’s not an arrangement that many Canadians can fathom as a choice. Since running across this sub-culture I have marvelled.
One clear aspect of this lifestyle is that the women are very close to each other, hugging and kissing openly and frequently, dressing for each other – tonight they held a beauty pageant reminiscent of the “meat market” shows long out of favour in Canadian Caucasian culture – and paying much less attention to “eligible” men than I would expect in my familiar circles.
When they party they bring home cooked food and eat extravagantly, they sing and they dance – mostly with each other although men are not obviously excluded.
I love to dance when people are not coupling. When people are dancing in pairs moving a wheelchair on the dance floor can be an awkward and lonely effort. When it’s more free form, my presence seems to give people permission to strut their stuff in any way they can and to have a good time. People will try me out in ones or twos, doing their personal gyration for a short while, then move on. In the general moving on I get to go from person to person too, which is way easier to do in a wheelchair and more fun anyway to me.
Three times I have successfully done the couple thing on the dance floor, twice with a man. One guy and the woman are trained dancers, and all moulded their dance steps to the movements a wheelchair can actually do. I was able to keep up the dance in close “formation” for more than an hour – a feat of tremendous stamina and exhilaration for me and my partners.
I rarely get to dance. It’s something I love to do. Occasionally I remember and take steps to find an accessible place. Typically it’s too expensive or fixated on couple style dancing and I “forget” to pursue this pleasure.
But tonight I danced with Philippino women (and Teem). I had a great time. It is good to move my sore body again and to lose myself in the beat. It is a way to feel that I am “me”.
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