It’s beginning to look a lot like Christmas!
Peter has been living in my “spare” room since early September. He gets to stay in return for giving me pro bono one shift a week of personal assistance, and for doing some inclusive community development around this housing cooperative, Robert Cooke.
The other day Peter brought home a “Christmas tree” constructed from 111 Coke cans coated in silver paint which has partly worn away, and a string of Christmas lights so old that Peter is having trouble finding replacement bulbs and sockets. This artefact was constructed by his mother – likely 50 years ago or so. Yesterday he brought home a “wreath” made almost entirely from twigs with barely a speck of green.
It’s funny how something can occur that makes one realize that one – I – actually care about something. The Coke can sculpture is a memento and a sort of heirloom for Peter and so even though in my view it doesn’t qualify as something that has a genre, like kitsch or retro, I recognize that it’s going to have a place in my household. But when it showed up, and especially when the round pile of twigs arrived, I realized that if we’re going to decorate around here for Christmas it better look LIKE Christmas to me.
Now, what does Christmas look like – to me! Well – green for starters. Secondly, not like Good Friday where utter bareness makes sense. My intellect “knows” these thoughts are not relative to any fixed reality, but the rest of me feels that Christmas is about new life, regeneration, hope reborn, and that the symbols of this ought to reflect new growth.
So we nailed the twigs to Peter’s bedroom door and I bought a Santa to sit on top of the pile of silvered cans along with some bows and beads to drape and paste so as to soften the severity of the piece. I also placed a small woven red and green decoration on the front door of our place. Now it’s time to do a little cleaning and to dig out the ornaments that have been in storage bins for over two years and give the pad a festive look.
Possibly one of the strongest effects of my Mother’s Alzeimers was that Christmas became an uncertain experience. There was a point when I was in my mid 20’s that I actively resisted celebrating Christmas. But from the time I was 29 until the year that Mom and Dad first moved into a retirement residence, Christmas varied little.
Mother always insisted that all four of her children be with her for this celebration. I imagine that there were a few years when my elder brother Ian was unable to attend because he was somewhere out of the country with the Canadian Armed Services. Otherwise we all showed up and generally speaking our spouses – permanent or temporary – showed up as well.
Mother always had a fabulously decorated tree. On Christmas Day itself she did not relinquish the kitchen to anyone. The meal was invariably rich, festive and abundant.
There were other invariant aspects as well. For example, my mother (and later my siblings) always took care to place me in exactly the spot where I was to remain for the entire occasion. The sole exception to this was when I moved to and from my assigned spot beside Dad at the dinner table.
In later years, we adopted a different pattern for present giving. At my sister, Rosemary’s, encouragement we put a price limit on the presents and reduced the number that were given. Later, but after Mom and Dad were in the retirement home, Christmas was held in one or other of the siblings homes and we used a Secret Santa strategy which was not only less expensive but a whole lot more fun for all of us.
But mother passed away two and a half years ago and suddenly there was no longer a clear sense that we would all gather in the same place. I do not believe that I have been to a family Christmas dinner since that time and I won’t be this year either.
So I find myself attracted to the idea that Peter would want to decorate our apartment with his mother’s Christmas tree even though, and at the very same moment, I am repelled by its tackiness. My own mother would never have let such a thing exist in her space.
For myself, at this time, I am merely reflecting on how intensely I am experiencing a need to do something that counterbalances both my own mother’s rigidity and Peter’s (and his mother’s) different sense of value. December 25th at 20 Garnett Janes Road Apartment 812 will be a very different day indeed!
Showing posts with label fragility. Show all posts
Showing posts with label fragility. Show all posts
Saturday, December 11, 2010
Thursday, December 9, 2010
December 9, 2010
One more article! (I promise I will write anew tomorrow.)
The Story
by Judith A. Snow, MA
Prologue
Many groups of people who are marginalized today have a history of their people that gives an explanation of present day reality. For example, African-Americans
and African-Canadians have stories that tell how their ancestors were enslaved and brought to North America. Stories tell how some were guided by maps encoded into songs as they traveled the "underground railroad" and escaped to freedom.
These traditional stories give current members of the group, especially the children, an explanation for the poverty, discrimination, exploitation and hostility
they experience in the present. As the child grows, she or he may reject these interpretations and adopt or invent others. Even so, the stories have served a purpose. The stories give members of the group a way to defend themselves against the negative stereotypes that are attributed to them by others who have the power to discriminate and exploit.
Even while the material effects of marginalization are being experienced, the child has an inner anchor to sustain a positive identity for herself or himself. It
can be remembered that it is not her or his inevitable fate to be so abused. The opportunity remains to find a way to work for greater freedom and respect.
Children labeled with disability come to this world as members of every cultural group that occupies this world. Almost always they are born to parents who are
not themselves viewed as disabled. Those who surround them are almost always unfamiliar with the fact that handicappist stereotyping disguises and renders invisible the person's actual abilities and contributions. Their parents have no story to counter the negative beliefs about bodies and minds that function in unusual ways. In fact, their parents may very likely be champions of these stereotypes.
In such situations children have no way of knowing that there are other ways of knowing themselves. They cannot know how to resist adopting these beliefs about themselves. In other words, a labeled child has no choice but to understand themselves as broken, as being a "mistake" or a "defect", as being fundamentally incapable and irresponsible, as being a helpless misfit who is less than able.
For better or worse, human beings are easily molded by and adapt to the symbolic realities that we proclaim to each other. If I say the little white pill will take the pain away, sugar becomes a powerful analgesic. If enough of us believe you are dying, you are very likely to die. Consequently, the child who is labeled as "disabled" inevitably becomes a disabled child - broken, helpless and unable.
When I was seven months of age I was diagnosed as having Spinal Muscular Atrophy, a form of Muscular Dystrophy. I was labeled "severely physically disabled". When I was six years old I remember my father telling me that some U.S. doctors were putting children labeled "mentally retarded" to death, saying
that society should not have to bear the burden of caring for these children. Dad, who grew up in rural England, explained that in his youth children with "mental retardation" were able to grow potatoes along with everyone else. They were a regular, accepted part of his community. But children like me were killed. People felt they did not have enough resources to support someone who would likely not be able to grow food.
My father's story was harsh. But that is not what I heard when I was six. I heard that I had enemies and that I had better pay attention. I heard that he and Mom were going against the mainstream and that meant they loved me and that we were all vulnerable. I heard that the way to gain acceptance among strangers was to contribute to the well-being of the community.
Outside of this one occasion I was raised without an orientation to the prejudice daily inculcated into my being. I was in my thirties before it really began to occur to me that I was my own worst enemy. I had adopted all the ableist stereotypes as being realities of my true self. Consequently I cooperated while others,
wittingly or not, hurt my body, deflected my mind, impoverished my circumstances, and diminished my abilities and contributions.
I have long thought that living as a labeled person requires the skills to live as an alien in a misunderstanding, often hostile, foreign territory. It would be helpful to have an orientation to the ways of the foreign inhabitants. I often have wished to have a reorienting story, such as might have been told to me as I sat in my mother's lap, still a babe, if my mother had known I needed such a story. I invented such a story.
The Story
by Judith A. Snow, MA
You are not from here. You are more like the people who are from here than they can imagine. But they find it difficult to see you for who you are or to like you.
You have chosen to live your life among these people. This is a dangerous choice. You made this choice because you love these people. They need you.
You must remember that it takes a long time for most of these people to see that you are alive, and that you have a heart, and that you are trying to give something to them.
Some of them will never see you as anything more than a puppet at best. You must find people who will see that you are alive. You must help them over and over again to keep on seeing that you are alive. If you do not help people to see that you are alive, you will fall asleep. The only life you will have is the life of a
puppet filled with other people's stories. They may grow tired of playing with you; they may break you; they may throw you away; they may destroy you.
When you find people who can see you, you must learn to live among them. You must learn to believe most of what they believe, and to act in most of the same ways as they act. People who can see you will tell you how to do this. You must listen closely and watch carefully even when it is tiresome. If you do not strive to become like them, the others who cannot see you will drive you away. Even those who can see you will not be able to hold on to you.
However, you must not strive to be completely like these people or you will break yourself.
While you are among these people you must constantly search for ways to hang on to your true self and your true way of being even while you are acting like others as much as possible. As some of these people get to know you better and better they can help you find your true self and your own way of being.
Be courageous in asking these people to help you be your true self. Be courageous in doing this even when it hurts you and when it hurts them. It is your way to love these people. It is your way to heal them. It is your way to help them renew themselves. It is why you are choosing to live among them.
The Story
by Judith A. Snow, MA
Prologue
Many groups of people who are marginalized today have a history of their people that gives an explanation of present day reality. For example, African-Americans
and African-Canadians have stories that tell how their ancestors were enslaved and brought to North America. Stories tell how some were guided by maps encoded into songs as they traveled the "underground railroad" and escaped to freedom.
These traditional stories give current members of the group, especially the children, an explanation for the poverty, discrimination, exploitation and hostility
they experience in the present. As the child grows, she or he may reject these interpretations and adopt or invent others. Even so, the stories have served a purpose. The stories give members of the group a way to defend themselves against the negative stereotypes that are attributed to them by others who have the power to discriminate and exploit.
Even while the material effects of marginalization are being experienced, the child has an inner anchor to sustain a positive identity for herself or himself. It
can be remembered that it is not her or his inevitable fate to be so abused. The opportunity remains to find a way to work for greater freedom and respect.
Children labeled with disability come to this world as members of every cultural group that occupies this world. Almost always they are born to parents who are
not themselves viewed as disabled. Those who surround them are almost always unfamiliar with the fact that handicappist stereotyping disguises and renders invisible the person's actual abilities and contributions. Their parents have no story to counter the negative beliefs about bodies and minds that function in unusual ways. In fact, their parents may very likely be champions of these stereotypes.
In such situations children have no way of knowing that there are other ways of knowing themselves. They cannot know how to resist adopting these beliefs about themselves. In other words, a labeled child has no choice but to understand themselves as broken, as being a "mistake" or a "defect", as being fundamentally incapable and irresponsible, as being a helpless misfit who is less than able.
For better or worse, human beings are easily molded by and adapt to the symbolic realities that we proclaim to each other. If I say the little white pill will take the pain away, sugar becomes a powerful analgesic. If enough of us believe you are dying, you are very likely to die. Consequently, the child who is labeled as "disabled" inevitably becomes a disabled child - broken, helpless and unable.
When I was seven months of age I was diagnosed as having Spinal Muscular Atrophy, a form of Muscular Dystrophy. I was labeled "severely physically disabled". When I was six years old I remember my father telling me that some U.S. doctors were putting children labeled "mentally retarded" to death, saying
that society should not have to bear the burden of caring for these children. Dad, who grew up in rural England, explained that in his youth children with "mental retardation" were able to grow potatoes along with everyone else. They were a regular, accepted part of his community. But children like me were killed. People felt they did not have enough resources to support someone who would likely not be able to grow food.
My father's story was harsh. But that is not what I heard when I was six. I heard that I had enemies and that I had better pay attention. I heard that he and Mom were going against the mainstream and that meant they loved me and that we were all vulnerable. I heard that the way to gain acceptance among strangers was to contribute to the well-being of the community.
Outside of this one occasion I was raised without an orientation to the prejudice daily inculcated into my being. I was in my thirties before it really began to occur to me that I was my own worst enemy. I had adopted all the ableist stereotypes as being realities of my true self. Consequently I cooperated while others,
wittingly or not, hurt my body, deflected my mind, impoverished my circumstances, and diminished my abilities and contributions.
I have long thought that living as a labeled person requires the skills to live as an alien in a misunderstanding, often hostile, foreign territory. It would be helpful to have an orientation to the ways of the foreign inhabitants. I often have wished to have a reorienting story, such as might have been told to me as I sat in my mother's lap, still a babe, if my mother had known I needed such a story. I invented such a story.
The Story
by Judith A. Snow, MA
You are not from here. You are more like the people who are from here than they can imagine. But they find it difficult to see you for who you are or to like you.
You have chosen to live your life among these people. This is a dangerous choice. You made this choice because you love these people. They need you.
You must remember that it takes a long time for most of these people to see that you are alive, and that you have a heart, and that you are trying to give something to them.
Some of them will never see you as anything more than a puppet at best. You must find people who will see that you are alive. You must help them over and over again to keep on seeing that you are alive. If you do not help people to see that you are alive, you will fall asleep. The only life you will have is the life of a
puppet filled with other people's stories. They may grow tired of playing with you; they may break you; they may throw you away; they may destroy you.
When you find people who can see you, you must learn to live among them. You must learn to believe most of what they believe, and to act in most of the same ways as they act. People who can see you will tell you how to do this. You must listen closely and watch carefully even when it is tiresome. If you do not strive to become like them, the others who cannot see you will drive you away. Even those who can see you will not be able to hold on to you.
However, you must not strive to be completely like these people or you will break yourself.
While you are among these people you must constantly search for ways to hang on to your true self and your true way of being even while you are acting like others as much as possible. As some of these people get to know you better and better they can help you find your true self and your own way of being.
Be courageous in asking these people to help you be your true self. Be courageous in doing this even when it hurts you and when it hurts them. It is your way to love these people. It is your way to heal them. It is your way to help them renew themselves. It is why you are choosing to live among them.
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!
Friday, November 26, 2010
November 26, 2010
Moods can be annoying!
Of course with yesterday’s great news there are complications. What will this do to my ODSP income, if anything? How does this affect the people who are expecting me to be more available to WPIT? Already I have had an offer to purchase four paintings from a speculator. Another person wanted me to share the news NOW with a group I haven’t gotten to yet.
None of this changes anything substantial. It just leaves that mood – that unwelcome sense of a “bad moon rising” – that sense of distraction that comes with having multiple agendas to untangle. What of all this is me – my expression?
Perhaps that is the point anyway. What is my expression in the face of being recognized? It’s one thing to be “out” trying to get “in”. It’s quite another, I suppose, to have come home to find that home is no more interested in Inclusion than anywhere else was.
Not that I thought it was – I just got disoriented for a moment! Whoops - sorry.
Inclusion hasn’t happened in the world yet, except for those momentary, seductive occasions that give one both a sense of what’s possible and the necessity to not hope unrealistically. There is still much work to do. The question is what is the good work to do now?
I love the heady beginnings of fun things. The video game project, the ROM. I’m not so fond of the negotiation part – sorting out mine and other’s agendas, often in a competitive stance.
There is nothing wrong with either the competition nor the fact that I don’t like it. In fact this is precisely where I get to show that Inclusion can actually happen. If we/I can come to grips with all the needs and diversities and have it work out with no one left out then the world really will have something to pay attention to!
So can I like it, or at least cease to resist it? Can I be the perfect matador and simply not be there for the moment the bull passes through the cape?
It’s not a challenge I had anticipated but neither is one I am unfamiliar with. This is just taking a Rubik’s cube life to another level.
I wonder when and what I will paint next. My familiar tracker quit this week, and although Mike is a good tracker, if he tracks for me on the days he works as a personal assistant it limits his break time. It seems ironic indeed that at the moment when the world will want to see me paint, I am almost as unprepared to do so as in the beginning in 2004.
So perhaps the genuine question for me to address now, in the few months before the exhibit happens, is who will paint with me in this upcoming year of public scrutiny?
Of course with yesterday’s great news there are complications. What will this do to my ODSP income, if anything? How does this affect the people who are expecting me to be more available to WPIT? Already I have had an offer to purchase four paintings from a speculator. Another person wanted me to share the news NOW with a group I haven’t gotten to yet.
None of this changes anything substantial. It just leaves that mood – that unwelcome sense of a “bad moon rising” – that sense of distraction that comes with having multiple agendas to untangle. What of all this is me – my expression?
Perhaps that is the point anyway. What is my expression in the face of being recognized? It’s one thing to be “out” trying to get “in”. It’s quite another, I suppose, to have come home to find that home is no more interested in Inclusion than anywhere else was.
Not that I thought it was – I just got disoriented for a moment! Whoops - sorry.
Inclusion hasn’t happened in the world yet, except for those momentary, seductive occasions that give one both a sense of what’s possible and the necessity to not hope unrealistically. There is still much work to do. The question is what is the good work to do now?
I love the heady beginnings of fun things. The video game project, the ROM. I’m not so fond of the negotiation part – sorting out mine and other’s agendas, often in a competitive stance.
There is nothing wrong with either the competition nor the fact that I don’t like it. In fact this is precisely where I get to show that Inclusion can actually happen. If we/I can come to grips with all the needs and diversities and have it work out with no one left out then the world really will have something to pay attention to!
So can I like it, or at least cease to resist it? Can I be the perfect matador and simply not be there for the moment the bull passes through the cape?
It’s not a challenge I had anticipated but neither is one I am unfamiliar with. This is just taking a Rubik’s cube life to another level.
I wonder when and what I will paint next. My familiar tracker quit this week, and although Mike is a good tracker, if he tracks for me on the days he works as a personal assistant it limits his break time. It seems ironic indeed that at the moment when the world will want to see me paint, I am almost as unprepared to do so as in the beginning in 2004.
So perhaps the genuine question for me to address now, in the few months before the exhibit happens, is who will paint with me in this upcoming year of public scrutiny?
Friday, November 5, 2010
November 5, 2010
Since the subject of my death has come up three times this week, I guess I’ll write about it now.
This morning my masseuse Jen brought it up in terms of a question. She asked me if I was resisting my death. She also asked me how long I expected to live, and a number of other questions in the same vein. Later today when three good friends visited – Gloria, Franziska and Mary – Gloria raised the topic again. As is typical between Gloria and I the subject of death comes up around the long struggle had by herself, her husband Peter, her son Scott’s many friends and Scott himself to ensure that he lived a good life in the face of his many physical frailties. This was so especially in the face of a culture that strongly reinforces the idea that a young who is deaf and blind and physically quite fragile is of no particular value and ought to have the decency to pass away quickly.
Earlier this week, the subject was raised by another friend who was visiting a friend of hers who is close to death from stomach cancer. She is suggesting that it might be valuable for me to be interviewed by people who provide palliative support, and for me to do more research in this area.
It is curious to me. It is not that I think that I’m actually dying right now. Of course who knows? But what’s curious is that the question of my imminent death has been a shadow in my life since as early as I can remember. It seems that the shadow is shifting to confront me and for me to confront it. Is this because of my age, my current physical state or is it because my friends recognize that the shadow is some sort of limitation in my well-being?
In Cycle 1, there were a number of predictions about my early demise because the then current medical experience with spinal muscular atrophy was that the muscular deterioration that is the major symptom of the syndrome seemed to be relentless and unstoppable, leading in every case to a terminal incapacity to breathe. When I was in my late teenage years, I was firmly told by a medical expert that even though I had lived passed 2, 4, 6 and 12 years of age I would certainly not make it to 30. (By the way, that medical expert is long dead.)
Hence the beginning of the pattern that now leads me to refer to my life in cycles of 30. The story is now famous of my leaving a chronic care institution on the cusp of my 30th birthday, expecting to die within weeks, only to discover that the major source of my illness in the hospital was an allergy to red dyes. I quickly recovered my health, lived past 30, and invented along with the Joshua Committee, my support circle, individualized funding for personal assistants. This huge battle had to be fought and won so that I wouldn’t have to return to the institution.
The next 30 years would see me bringing the ideas of relationship building, gifted capacity, inclusion and much more to the area that usually gets called “disability.”
But, as I said in yesterday’s writing, there was another hidden agenda – at least hidden from me – that lead me to leave a paying job, go on a search for stories about inclusion, and lead to a gradually debilitating series of crises that pretty much began around my 60th birthday. It is fascinating to me that even though I can see the pattern of 30 times 2, I could not see nor deflect the process that lead to my recent near death experience.
But a now a new space is open. I have seen that it is possible for me to enter into a new relationship with my own physical body. I have seen that I can have and explore the experiences of fun, comfort and health, and not solely be driven by an intense desire to contribute to the world and transform the discourse of Inclusion.
And so people are questioning me, and encouraging me to not deny that the issue of my own death causes me to push past personal and cultural limits. Of course, this is not by any means a bad thing. However, it is a costly thing and now is a good time to explore the cost as well as the benefit to me and to others.
What Jen was asking me: “Are you resisting your death?” My answer to her was: “I think that it’s more that I’m unsure whether I’m willing to die.” Perhaps it’s the same thing.
I am more sure now than I ever have been that my life has been valuable to others and that I have made a real contribution. This came out of the first few days of the illness when I asked the question: “Has the message been delivered?” And the answer was a clear yes. This is where the space has opened – I am no longer driven by a sense that I have a job to do and that I can’t die until it’s done.
But, can I live without being haunted by the certain knowledge that someday I will die? Can it just be a knowing without being a prod or a ghost?
Of this I am not yet sure.
This morning my masseuse Jen brought it up in terms of a question. She asked me if I was resisting my death. She also asked me how long I expected to live, and a number of other questions in the same vein. Later today when three good friends visited – Gloria, Franziska and Mary – Gloria raised the topic again. As is typical between Gloria and I the subject of death comes up around the long struggle had by herself, her husband Peter, her son Scott’s many friends and Scott himself to ensure that he lived a good life in the face of his many physical frailties. This was so especially in the face of a culture that strongly reinforces the idea that a young who is deaf and blind and physically quite fragile is of no particular value and ought to have the decency to pass away quickly.
Earlier this week, the subject was raised by another friend who was visiting a friend of hers who is close to death from stomach cancer. She is suggesting that it might be valuable for me to be interviewed by people who provide palliative support, and for me to do more research in this area.
It is curious to me. It is not that I think that I’m actually dying right now. Of course who knows? But what’s curious is that the question of my imminent death has been a shadow in my life since as early as I can remember. It seems that the shadow is shifting to confront me and for me to confront it. Is this because of my age, my current physical state or is it because my friends recognize that the shadow is some sort of limitation in my well-being?
In Cycle 1, there were a number of predictions about my early demise because the then current medical experience with spinal muscular atrophy was that the muscular deterioration that is the major symptom of the syndrome seemed to be relentless and unstoppable, leading in every case to a terminal incapacity to breathe. When I was in my late teenage years, I was firmly told by a medical expert that even though I had lived passed 2, 4, 6 and 12 years of age I would certainly not make it to 30. (By the way, that medical expert is long dead.)
Hence the beginning of the pattern that now leads me to refer to my life in cycles of 30. The story is now famous of my leaving a chronic care institution on the cusp of my 30th birthday, expecting to die within weeks, only to discover that the major source of my illness in the hospital was an allergy to red dyes. I quickly recovered my health, lived past 30, and invented along with the Joshua Committee, my support circle, individualized funding for personal assistants. This huge battle had to be fought and won so that I wouldn’t have to return to the institution.
The next 30 years would see me bringing the ideas of relationship building, gifted capacity, inclusion and much more to the area that usually gets called “disability.”
But, as I said in yesterday’s writing, there was another hidden agenda – at least hidden from me – that lead me to leave a paying job, go on a search for stories about inclusion, and lead to a gradually debilitating series of crises that pretty much began around my 60th birthday. It is fascinating to me that even though I can see the pattern of 30 times 2, I could not see nor deflect the process that lead to my recent near death experience.
But a now a new space is open. I have seen that it is possible for me to enter into a new relationship with my own physical body. I have seen that I can have and explore the experiences of fun, comfort and health, and not solely be driven by an intense desire to contribute to the world and transform the discourse of Inclusion.
And so people are questioning me, and encouraging me to not deny that the issue of my own death causes me to push past personal and cultural limits. Of course, this is not by any means a bad thing. However, it is a costly thing and now is a good time to explore the cost as well as the benefit to me and to others.
What Jen was asking me: “Are you resisting your death?” My answer to her was: “I think that it’s more that I’m unsure whether I’m willing to die.” Perhaps it’s the same thing.
I am more sure now than I ever have been that my life has been valuable to others and that I have made a real contribution. This came out of the first few days of the illness when I asked the question: “Has the message been delivered?” And the answer was a clear yes. This is where the space has opened – I am no longer driven by a sense that I have a job to do and that I can’t die until it’s done.
But, can I live without being haunted by the certain knowledge that someday I will die? Can it just be a knowing without being a prod or a ghost?
Of this I am not yet sure.
Thursday, November 4, 2010
November 4, 2010
Today was a total rest day. At 10 o’clock in the evening I have not been out of bed today except to take a warm, delicious bath.
Somewhat against my will, I realized that rest days must be built into my life on a far more regular basis. There was a time when I consistently had three rest days a month, although resting meant staying in bed only until 3 pm. I pretty much gave up this practice when I went to live in the trailer in the southern United States. When I returned I gave it up entirely.
Now that I have learned that stress is a major part of the feedback loop that leads to intractable pain, I have begun to review my history in terms of stress. It’s not exactly a point of view that I prefer to look from. Generally I prefer to look at my life in terms of accomplishments or transformations or even neighbourhoods and spiritual passages. However, it seems that there has been a certain amount of denial on my part of the factors that have worn down my physical body and occasionally my will power as well.
In the hospital when they were putting in the PICC line, I was struck by how my veins shut, seemingly in an effort to prevent the catheter from passing through them. This was considered to be somewhat remarkable to the radiologist who was performing the procedure. I also noticed months before I ended up in the hospital how frequently my leg muscles were tight or how difficult it was to release my bladder or how frequently some other part of my body like my neck would be stiff and tight. Looking back I realize there were plenty of signs that I was stressed – lots of straightforward signs of wear, tear and exhaustion.
I recall in January sitting for hours in front of my computer not being able to muster the willpower to do more than play Freecell even though I had hours of work to complete. Eventually I realized that this was not so much procrastination as emotional and physical fatigue. Even so, I did not know how or was somehow unwilling to respond sufficiently to my own stress.
The entire story of seven months, even 9 months if you include our preparation, of the World Peace Tour could be written as a story of stress. It doesn’t seem right or necessary at this time to go into a great deal of detail. Suffice it to say that there were layers of financial burdens that we struggled under as well as a myriad of personal conflicts to work out both before and during the entire trip. Added to this was the global economic crash that set in the same week that we left. We had the mechanical difficulties, health difficulties and a number of the contracts that I thought I would have to rely on as sources of connections and financial stability fell apart soon after our departure.
We made it through brilliantly and learned a great deal along the way. In the subsequent months we learned even more as we discussed our tour with others and reviewed our experiences. At the same time the stress never let up. Understandings and commitments broke down leading to loss of home and loss of much of the photographic and video record of our journey.
By September I was rebuilding my life in terms of home, money, personal assistants and even in some respects my very identity.
I can look back on this time as a huge opening as I found a home, a neighbourhood, a staff team and way of living economically which is by and large working beautifully. I can also look ¬at the same time period as a relentless series of crises that took their toll. For example, throughout exactly the same time – November 2008-September 2009 – my swallowing became compromised, my diet became limited, my bladder was stressed with stones, I developed back pain, my funding for personal assistants was nearly taken away from me, I had to train a new staff team and learn a completely new payroll system as well as advocate for limited time to travel out of the country. I was seemingly unable to stop and breathe as each and every one of these problems had to be addressed as a crisis.
So, now I suppose I have a little bit of breathing space given to me by the ultimate crisis of no longer being able to sit up. I get to lie down and look at how can I more effectively get outside of the stress zone and create a peaceful environment for myself, especially my body.
I had an insight this morning when I was talking with a few of my Wisdom buddies (Landmark Education). I realized that I had lived my life as a skilled manager of my body. I have not actually been present to loving and enjoying my physical self. There have been moments of course – very little in life is black and white. There have been moments of hot tubs, long walks in beautiful places, cuddling up with someone, etc. But by and large these have not been frequent; neither have they been my focus. I generally opted to maximize my social and community participation and did not consider to any great extent my personal experience of life.
Don’t’ get me wrong - I don’t feel deprived. I have clearly benefitted and utterly enjoyed the extensive amount of travel and participation that were part of Cycle 2. No, this is more of a realization that there is another dimension to life that I have not made available to myself.
One of the gentlemen that came to my birthday party is a clown and a house painter. He was telling me about how he actually mixes the colours of the paint which he uses when his contractors give him the opportunity. He clearly takes pride in creating subtle shifts in his hues and tints. I realize that there are several areas of pleasure that are already open to me where depth of exploration is possible. I paint and I can learn about and experiment with colour much more. I listen moment by moment to rich sounds in my neighbourhood and I can easily enhance these experiences if I merely take some time to do it. What about other physical experiences? Probably there are people in my life who would support me to explore these dimensions as well.
Somewhat against my will, I realized that rest days must be built into my life on a far more regular basis. There was a time when I consistently had three rest days a month, although resting meant staying in bed only until 3 pm. I pretty much gave up this practice when I went to live in the trailer in the southern United States. When I returned I gave it up entirely.
Now that I have learned that stress is a major part of the feedback loop that leads to intractable pain, I have begun to review my history in terms of stress. It’s not exactly a point of view that I prefer to look from. Generally I prefer to look at my life in terms of accomplishments or transformations or even neighbourhoods and spiritual passages. However, it seems that there has been a certain amount of denial on my part of the factors that have worn down my physical body and occasionally my will power as well.
In the hospital when they were putting in the PICC line, I was struck by how my veins shut, seemingly in an effort to prevent the catheter from passing through them. This was considered to be somewhat remarkable to the radiologist who was performing the procedure. I also noticed months before I ended up in the hospital how frequently my leg muscles were tight or how difficult it was to release my bladder or how frequently some other part of my body like my neck would be stiff and tight. Looking back I realize there were plenty of signs that I was stressed – lots of straightforward signs of wear, tear and exhaustion.
I recall in January sitting for hours in front of my computer not being able to muster the willpower to do more than play Freecell even though I had hours of work to complete. Eventually I realized that this was not so much procrastination as emotional and physical fatigue. Even so, I did not know how or was somehow unwilling to respond sufficiently to my own stress.
The entire story of seven months, even 9 months if you include our preparation, of the World Peace Tour could be written as a story of stress. It doesn’t seem right or necessary at this time to go into a great deal of detail. Suffice it to say that there were layers of financial burdens that we struggled under as well as a myriad of personal conflicts to work out both before and during the entire trip. Added to this was the global economic crash that set in the same week that we left. We had the mechanical difficulties, health difficulties and a number of the contracts that I thought I would have to rely on as sources of connections and financial stability fell apart soon after our departure.
We made it through brilliantly and learned a great deal along the way. In the subsequent months we learned even more as we discussed our tour with others and reviewed our experiences. At the same time the stress never let up. Understandings and commitments broke down leading to loss of home and loss of much of the photographic and video record of our journey.
By September I was rebuilding my life in terms of home, money, personal assistants and even in some respects my very identity.
I can look back on this time as a huge opening as I found a home, a neighbourhood, a staff team and way of living economically which is by and large working beautifully. I can also look ¬at the same time period as a relentless series of crises that took their toll. For example, throughout exactly the same time – November 2008-September 2009 – my swallowing became compromised, my diet became limited, my bladder was stressed with stones, I developed back pain, my funding for personal assistants was nearly taken away from me, I had to train a new staff team and learn a completely new payroll system as well as advocate for limited time to travel out of the country. I was seemingly unable to stop and breathe as each and every one of these problems had to be addressed as a crisis.
So, now I suppose I have a little bit of breathing space given to me by the ultimate crisis of no longer being able to sit up. I get to lie down and look at how can I more effectively get outside of the stress zone and create a peaceful environment for myself, especially my body.
I had an insight this morning when I was talking with a few of my Wisdom buddies (Landmark Education). I realized that I had lived my life as a skilled manager of my body. I have not actually been present to loving and enjoying my physical self. There have been moments of course – very little in life is black and white. There have been moments of hot tubs, long walks in beautiful places, cuddling up with someone, etc. But by and large these have not been frequent; neither have they been my focus. I generally opted to maximize my social and community participation and did not consider to any great extent my personal experience of life.
Don’t’ get me wrong - I don’t feel deprived. I have clearly benefitted and utterly enjoyed the extensive amount of travel and participation that were part of Cycle 2. No, this is more of a realization that there is another dimension to life that I have not made available to myself.
One of the gentlemen that came to my birthday party is a clown and a house painter. He was telling me about how he actually mixes the colours of the paint which he uses when his contractors give him the opportunity. He clearly takes pride in creating subtle shifts in his hues and tints. I realize that there are several areas of pleasure that are already open to me where depth of exploration is possible. I paint and I can learn about and experiment with colour much more. I listen moment by moment to rich sounds in my neighbourhood and I can easily enhance these experiences if I merely take some time to do it. What about other physical experiences? Probably there are people in my life who would support me to explore these dimensions as well.
Tuesday, November 2, 2010
November 2, 2010
Well God saved us.
I came home without a catheter and without a PICC line. The doctors and technicians were very responsive, Helen was funny and anxious, and Lorraine was steady and responsive. Although parts of the test were uncomfortable mostly it went off without a hitch. We discovered that my bladder has FULLY recovered after a rest of 5 weeks and is free both from infections and stones. Throughout the day I have peed in the usual way without difficulty and I seem to be home free on that account.
Having had such a positive outcome Helen and I decided to go off to St. Mike’s and see if we could round up Dr. Ray and get permission to take the PICC line out. Both doctors at the eurodynamics clinic said they were not permitted to do so. As I found my way to the Ambulatory Clinic Dr. Ray and I ran into each other. He took me to a room and simply removed the PICC line himself – all ten purple inches of it. I am no longer tethered to medical equipment. I am free. I am no longer sick. I am still in pain, but not as much.
At lunch in the cafeteria I ran into our buddy from the 14th floor, the nutrition researcher, Stanley. Perhaps I will take another time in the near future and write more about him – I realize that there was a lot that went on in the hospital that none of the readers of these two pagers will know about. Stanley was a real breath of fresh air during those difficult nine days. Besides taking data from me about my eating habits as I recovered he took a real interest in my life, my assistants, my circle and my art. He spent many more five minute periods with me than data collection required and even went out of his way to help us find palatable food when the nausea was at its worst.
We sat at his table, shared lunch and talked about his research. He asked me a lot of questions about my daily life and became more and more inspired by the kooky life that I live. Later, Lorraine suggested that I invite him to my circle and I think that is a very, very fine idea.
Then it was off to Laser Eagles. When I arrived most everybody was there and even Greg had shown up although it had been predicted that his Wheeltrans would have been cancelled. We talked painting, we talked fundraising – it was clear that new life has been breathed into this enfeebled collective. By 2:30pm I was exhausted and needed to go buy a knee brace due to the fact that I managed to twist my knee during the bladder test. In spite of this crash at the end of a miraculous day I remain pretty up beat. Truly the prayers of many, many have been answered.
As I returned to bed Mike hung out to write some more for the upcoming WPIT website. My tongue was “loosened” as they say. I told him and Helen a couple of stories from the World Peace through Inclusion Tour. I went on to talk about the years of struggle before the Tour was envisioned working for the service system that led me to an abrupt decision to take off and explore inclusion. At one point I regretted that Mike wasn’t typing because it could have been my two pager for today. Alas, he was not focused on me but on the website. Someday soon I will begin to record some of these stories.
I realize just how much I am not dying at this point. Although I am uncertain that I can pick up life as it was – that would be silly considering how stressful and unhealthy it turned out to be – I am full of energy and desire to live an exciting life. Whether it be writing stories, Laser Eagles, WPIT, friends, Wisdom, walks in the parks by the lake, amazing food, trips to the Lebanese café a few blocks away, letting my father buy me a greasy spoon lunch, or bantering with one or more of my personal assistants – life is rich and longing to be lived!
I came home without a catheter and without a PICC line. The doctors and technicians were very responsive, Helen was funny and anxious, and Lorraine was steady and responsive. Although parts of the test were uncomfortable mostly it went off without a hitch. We discovered that my bladder has FULLY recovered after a rest of 5 weeks and is free both from infections and stones. Throughout the day I have peed in the usual way without difficulty and I seem to be home free on that account.
Having had such a positive outcome Helen and I decided to go off to St. Mike’s and see if we could round up Dr. Ray and get permission to take the PICC line out. Both doctors at the eurodynamics clinic said they were not permitted to do so. As I found my way to the Ambulatory Clinic Dr. Ray and I ran into each other. He took me to a room and simply removed the PICC line himself – all ten purple inches of it. I am no longer tethered to medical equipment. I am free. I am no longer sick. I am still in pain, but not as much.
At lunch in the cafeteria I ran into our buddy from the 14th floor, the nutrition researcher, Stanley. Perhaps I will take another time in the near future and write more about him – I realize that there was a lot that went on in the hospital that none of the readers of these two pagers will know about. Stanley was a real breath of fresh air during those difficult nine days. Besides taking data from me about my eating habits as I recovered he took a real interest in my life, my assistants, my circle and my art. He spent many more five minute periods with me than data collection required and even went out of his way to help us find palatable food when the nausea was at its worst.
We sat at his table, shared lunch and talked about his research. He asked me a lot of questions about my daily life and became more and more inspired by the kooky life that I live. Later, Lorraine suggested that I invite him to my circle and I think that is a very, very fine idea.
Then it was off to Laser Eagles. When I arrived most everybody was there and even Greg had shown up although it had been predicted that his Wheeltrans would have been cancelled. We talked painting, we talked fundraising – it was clear that new life has been breathed into this enfeebled collective. By 2:30pm I was exhausted and needed to go buy a knee brace due to the fact that I managed to twist my knee during the bladder test. In spite of this crash at the end of a miraculous day I remain pretty up beat. Truly the prayers of many, many have been answered.
As I returned to bed Mike hung out to write some more for the upcoming WPIT website. My tongue was “loosened” as they say. I told him and Helen a couple of stories from the World Peace through Inclusion Tour. I went on to talk about the years of struggle before the Tour was envisioned working for the service system that led me to an abrupt decision to take off and explore inclusion. At one point I regretted that Mike wasn’t typing because it could have been my two pager for today. Alas, he was not focused on me but on the website. Someday soon I will begin to record some of these stories.
I realize just how much I am not dying at this point. Although I am uncertain that I can pick up life as it was – that would be silly considering how stressful and unhealthy it turned out to be – I am full of energy and desire to live an exciting life. Whether it be writing stories, Laser Eagles, WPIT, friends, Wisdom, walks in the parks by the lake, amazing food, trips to the Lebanese café a few blocks away, letting my father buy me a greasy spoon lunch, or bantering with one or more of my personal assistants – life is rich and longing to be lived!
Sunday, October 31, 2010
October 30, 2010
Today I used my maximum available doses of Morphine. In so doing, I was successful at participating fully, sitting up, at my 61st birthday party. A multitude of people came from as far away as British Columbia and as close by as the same floor I live on in my Co-op building. It was all beautifully orchestrated, a lot of fun, and yet another demonstration of abundance. I am not the only one who is over fed today.
The third dose of Morphine was to give me the capacity to finish my dinner and do my writing in bed, this late evening. Writing and Morphine don’t go so well together in my little body. I have heard that it enhances the artistic experience in others. I have not found that intoxication of any sort assists me in that way!
Today’s party and the last few days of Facebook acknowledgements have more than amply conveyed to me others’ appreciation of my existence and my contributions. I am affirmed, a little overwhelmed and a touch frustrated. I have reached the point where several plans are emerging. It is clear that my continued contribution is desired. At this point, my body is far, far, far from being up for it.
There is a somewhat macabre thought running through the last few days. Tomorrow is Halloween so perhaps this is all appropriate. I have thought in the past that I would love to have a great funeral but – Dammit! – I would have to miss it, wouldn’t I? The generous outpouring of affirmation, appreciation, intimacy and abundance that I have experienced in the last couple of weeks while I lie in my fragile and weakened state has made me think that, yes, I have gotten to experience what my wake would be like. And yes, thank God, I didn’t have to die to get it. Or at least not yet!
As more and more people are becoming aware of my efforts to manifest my expression, my unique perspective, I am learning that others have secretly been writing or thinking about writing in a similar vein. The difference is that I have just been putting it out there. How odd it is that I have such little sense of privacy. The theme has emerged and re-emerged over the past eight days, with a number of people quizzing me about whether I really want to let it all go to the public so freely. It has caused me to ponder a question that I would not have ever come up with on my own. Should I be more circumspect?
Well, in fact, from my perspective there is no “should” about it. Privacy doesn’t exist, or rather, exists only periodically and in short lived moments in my life.
No day has gone by when someone else didn’t wipe my butt, put food in my mouth, moved my limbs around, dressed and undressed me and otherwise handled my body as part of their own life path in some way – for better or worse. One of the consequences of this is that the “I” of Judith Snow tends to exist somewhat separately from my physical person. The flip side is that I easily enter into other people’s space – actually into their physical aura on occasion. What is privacy?
This has become somewhat of a theme in these writings. Boundaries.
I have rather enjoyed being on a urinary catheter for the past several weeks. This has given me much longer periods of time when I don’t have to interact with another physical person. For example, today after the party, I lay for over an hour in my bed by myself, mostly awake and shifting between watching the goings on outside my window and being with my thoughts. This provides for a certain kind of gathering – me giving myself a sense of continuity. It is a fiction of course, but a very interesting and useful fiction nonetheless. What is it that I am gathering? I suppose you could say that I am piecing together a new story of who I am and who I will be – a story that conforms both to the vast outreach that my life as achieved so far and at the same time the miniscule capacity that I currently have as a body.
In the past I have not reconciled these two bookends of my experience very well, though I am sure many will argue with this statement! I have either overtaxed my body self or I have (more commonly) forgotten how far my dreams and my expressions have reached in favour of thinking of myself as an unaccomplished person.
It would be awesome in Cycle 3 to willingly reach out as far as possible to bring peace and inclusion into the world and at the same time live as the physical being that I truly am – a small and ethereal albeit chubby body. Mother Theresa kind of pulled it off. She was a shrimp!
It puts me in mind of dreaming of just how to enjoy and take care of my body. In the past I have spent quite a bit of time thinking about how to keep myself participating, but not that much about how to keep myself comfortable and happy. This is a space I would like to explore more as I am laying around and recovering both from my illness and from the tests that I will shortly go through.
The third dose of Morphine was to give me the capacity to finish my dinner and do my writing in bed, this late evening. Writing and Morphine don’t go so well together in my little body. I have heard that it enhances the artistic experience in others. I have not found that intoxication of any sort assists me in that way!
Today’s party and the last few days of Facebook acknowledgements have more than amply conveyed to me others’ appreciation of my existence and my contributions. I am affirmed, a little overwhelmed and a touch frustrated. I have reached the point where several plans are emerging. It is clear that my continued contribution is desired. At this point, my body is far, far, far from being up for it.
There is a somewhat macabre thought running through the last few days. Tomorrow is Halloween so perhaps this is all appropriate. I have thought in the past that I would love to have a great funeral but – Dammit! – I would have to miss it, wouldn’t I? The generous outpouring of affirmation, appreciation, intimacy and abundance that I have experienced in the last couple of weeks while I lie in my fragile and weakened state has made me think that, yes, I have gotten to experience what my wake would be like. And yes, thank God, I didn’t have to die to get it. Or at least not yet!
As more and more people are becoming aware of my efforts to manifest my expression, my unique perspective, I am learning that others have secretly been writing or thinking about writing in a similar vein. The difference is that I have just been putting it out there. How odd it is that I have such little sense of privacy. The theme has emerged and re-emerged over the past eight days, with a number of people quizzing me about whether I really want to let it all go to the public so freely. It has caused me to ponder a question that I would not have ever come up with on my own. Should I be more circumspect?
Well, in fact, from my perspective there is no “should” about it. Privacy doesn’t exist, or rather, exists only periodically and in short lived moments in my life.
No day has gone by when someone else didn’t wipe my butt, put food in my mouth, moved my limbs around, dressed and undressed me and otherwise handled my body as part of their own life path in some way – for better or worse. One of the consequences of this is that the “I” of Judith Snow tends to exist somewhat separately from my physical person. The flip side is that I easily enter into other people’s space – actually into their physical aura on occasion. What is privacy?
This has become somewhat of a theme in these writings. Boundaries.
I have rather enjoyed being on a urinary catheter for the past several weeks. This has given me much longer periods of time when I don’t have to interact with another physical person. For example, today after the party, I lay for over an hour in my bed by myself, mostly awake and shifting between watching the goings on outside my window and being with my thoughts. This provides for a certain kind of gathering – me giving myself a sense of continuity. It is a fiction of course, but a very interesting and useful fiction nonetheless. What is it that I am gathering? I suppose you could say that I am piecing together a new story of who I am and who I will be – a story that conforms both to the vast outreach that my life as achieved so far and at the same time the miniscule capacity that I currently have as a body.
In the past I have not reconciled these two bookends of my experience very well, though I am sure many will argue with this statement! I have either overtaxed my body self or I have (more commonly) forgotten how far my dreams and my expressions have reached in favour of thinking of myself as an unaccomplished person.
It would be awesome in Cycle 3 to willingly reach out as far as possible to bring peace and inclusion into the world and at the same time live as the physical being that I truly am – a small and ethereal albeit chubby body. Mother Theresa kind of pulled it off. She was a shrimp!
It puts me in mind of dreaming of just how to enjoy and take care of my body. In the past I have spent quite a bit of time thinking about how to keep myself participating, but not that much about how to keep myself comfortable and happy. This is a space I would like to explore more as I am laying around and recovering both from my illness and from the tests that I will shortly go through.
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