a social worker met with me yesterday to ostensibly discuss how i'm doing with the prognosis i've been given.. her first question was, "so, well how do you feel about the decision you took to pursue your 'naturopathic treatments' (her emphasis not mine) you know, and now find yourself in this condition in hospital?"
"well, if i'm not mistaken, every single one of the patients in this ward are here after dutifully following their doctor's advice to take chemo and radiation, have you asked them the same question? you know, how they feel after following standard of care and its promise of remission and greater quality of life, but find themselves in this condition in hospital?"
.
.
.
i had fantastic quality of life from diagnosis until i took a sharp turn last month. my blood panels are all, as they say, unremarkable, my constitutional health is vital and strong, which is why i'm proving such a quandary for the white coats, the odd combination of a healthy body grappling with an advanced and gratuitous cancer... and that's all down to the choices i made last year...
its interesting to me that i'm constantly treated like i'm faking an illness until the diagnostics come back to cross check on my behalf, because when you look at me i can still walk, my organs aren't broken down, my system hasn't been corrupted from months if not years of pharmacology, so no one quite knows what to do with me. . when the relapse hit i had to seek assistance with pain management because of the aggressive nature of the kind of cancer i have, but from the start i've always maintained that i keep my options open and be sensible about how i pursue treatment. allopathic medicine has its place but so far it hasn't had anything to offer in terms of treatment. pain management is another affair. you're not going to reach for essential oils if you've broken your leg. its interesting however that following doctor's orders on pain management to the extent a certain desperation and common sense guides me to, has left me only seeing the negative side-effects... of palliative radiation, of taking drugs to counterbalance side effects of other drugs, but none of the benefits, so, as i said to the social worker, "maybe you want to reframe your question a little and get back to me." :)
and that's the nib of it... my white coat team has been getting increasingly uncomfortable... after proclaiming the benefits of palliative radiation it seemed a good gamble (one i don't regret, i was delirious with pain so i won't judge myself, plus i'm also an investigator, i was interested to experiment and see if perhaps i honestly was missing out on something of benefit), my body's responded instead with an incredible surge and overgrowth of what i would call a topical lymphangitic cancer (it was only yesterday that an MD acknowledged that TNBC has a reputation for not only quickly getting into lung, bone and brain, but expressing in these wild topicals... of note, this was never trotted out for consideration for me when we were discussing pros and cons).
i think for these reasons they are reactively casting me in an adversarial role. almost every interaction sees a team member casting us as medical model antagonists, or that my body must be behaving so wildly because i explored alternative treatments, so i'm getting what i deserve. further, their only remedy time and again is more radiation which is where the limits of my credulity are willing to go. not only do they want to radiate the L breast since it's been so completely overtaken by the topical cancer, they want to CT my brain since i'm starting to present Sxs that might be signs of metastatic brain cancer... i'm reluctant just yet as i also think these symptoms could be side effects of the mucho drugs and the radiation itself... for example, i'm having trouble swallowing, particularly liquids. it was only last night that i had trouble getting solids down too. i knew this could happen when you apply radiation to the spine in the thoracic area as we did last week. their solution is to put me on more meds, which in turn will have their own side-effects, or more radiation, which has spin of its own.
thus far i've said let's wait for more clarity on the brain symptoms... yes i have blurred and double vision, and i have little seizures, but these started with the hydromorphone and until i see clear evidence to contrary, i'm going to let them stand... the double vision is new, and the seizures have become more dramatic, but they coincide with boluses which for me is cause for pause... in the literature they are called myoclonic spasms. in any case, the only treatment they would offer if a CT came back positive for mets, common with TNBC, is full brain radiation. i doubt i would make myself a candidate for this. have to research today what to expect if i leave metastatic brain cancer untreated versus what to expect after full brain radiation. the lady in the room next to me just completed a course of full brain radiation, she's doing everything the doctor's tell her as she has very young children and relatives adding to pressure. over the time i was roommate to her i saw her at the outset pretty ambulatory and with some spark in her eyes. after the radiation she was uncommunicative, never left bed, and looked pale, swollen, wan, and the spark was completely, i'm sorry to say, extinguished. when white team brought up full brain radiation yesterday, on the same day my roommate was sent home to either recover or deteriorate, it made sense to me that i'd been gifted this observational situ.
so yes. these are the decisions one has to face down, and i love being in the driver seat, i love not having to explain my choices, i love being in a contrary environment that requires that i take a 360 view into account and synthesize an approach that uniquely suits me but couriers in facts and reality, that i don't just do what i'm told and stew about it on the sidelines as if i have no power when dialoguing with a medical authority. if we're going to talk about evidence-based medicine, let's really.
as for the trouble swallowing, i've found an old-fashioned solution from an old-fashioned nurse that's working just fine, eating ice chips. i'll see how i do on food. the 'problems' that arise each day give me new direction for my guided energy work, my personal inventorying, and my movement practices. for example, i can only sit up comfortably for less than an hour before i have to take a break. i have significant pain in the R trapezius that i have to work on, it only comes up when i sit in a chair. so far no symptoms of lung encroachment, i'm doing a lot of pranayam and visualization to keep them strong, to keep me strong as well... onwards!
Wednesday, April 30, 2014
Tuesday, April 29, 2014
we're all in the same time vault, no need for fear...
from my dear sister ruby sunshine... another example of bibliomancy in action...
From - A Cup of Tea by Osho
page 157
199.
Love
There is conflict in the mind - always.
because the mind cannot exist without the conflict.
It gets strengthened through conflict;
even warring against conflict is conflict
and struggling to go beyond the mind is mind.
See this deeply and immediately
without motive,
just as if you have come across a snake in the street
- and the jump.
Then it is not that you jump
but - the jump.
The jump happens spontaneously,
without effort and without conflict.
When this happens there is no-mind
and no-mind is the door to the divine.
Monday, April 28, 2014
white tara...
we have rotating day and night nurses in 12 hour shifts. its unusual to have a nurse over a succession of days, they prefer to move them around. a few days ago my night nurse was a gentle soul named lara. maybe its my bohemian pjs and mala beads but i find quite a few nurses start up convo with me about natural medicines and alternative therapies. this is how jirina and i got to talking about yoga and reiki.
after lara introduced herself she went straight for 'mistress of the baby deer,' one of my art pieces hanging out in my cubicle. we got to talking about my spirit portrait project and how it lead to me taking up more elaborate portraits of shamanic archetypes, and my growing interest in putting a personal spin on icons like the tibetan tara series.
she asked if i had ever heard of lasha mutual, and indeed i had. i was taking a look at other artists' depictions of the taras and greatly enjoyed coming across her illustrative work. turns out lasha is lara's sister! we then had quite a long talk about the struggle artists face... trying to live the 24/7 devotion required to really get the best of their instrument; the evident impossibility of pulling off such a level of pure mind focus in our brave new mediaphyllic world and finally the effects this kind of radical tension and conflict of interest has on a person's financial solvency and health.
in the end it wasn't the most upbeat discovering of kinship in experience, but it did have an effect on me... hearing i was not alone in finding that old rules applied to new circumstances led only to frustration and loss. i've recently concluded that the only way to go is to focus on vision and to forget about playing the game of social media and promotion... they take your focus away from becoming the purest vehicle possible for the deva within you and put you too adroitly in the world of commerce and materiality. i don' have the energy to elaborate on this right now, maybe next time.
anyway we had a lovely late night talk and i was really moved by the human backstory to lasha's enchanting illustrations. the next time i saw lara she said she had a surprise for me...
Goddess Tara is probably the oldest goddess who is still worshipped extensively in modern times. Tara originated as a Hindu goddess, a Great Goddess -- the Mother Creator, representing the eternal life force that fuels all life.
The oldest reference to the goddess Tara, perhaps, is found in an ancient saga of Finland thought to be 5 thousand years old. The saga speaks of a group known as Tar, the Women of Wisdom.
In the legends of Tibet where the worship of the Goddess Tara is still practiced in the Buddhist tradition, it is told that the goddess Tara is the feminine counterpart of the Avalokitesvara, the Bodhisattva who is reincarnated as the Dalai Lama.
Tara is an archetype of our own inner wisdom. She guides and protects us as we navigate the depths of our unconscious minds, helping us to transform consciousness, our own personal journeys of freedom.
for my print i chose this one... this white tara stood out to me because she was the only one in the collection who looked out in a straightforward openness towards the viewer. simple. honest. not encumbered by any kind of self-image or personal narrative, perhaps because she has arrived at a plateau where it's not necessary to have a story anymore. one would assume as much since this is a tara after all. her uncomplicated openness is the state i seek so i spotted it instantly and am overjoyed to have her company in my room as i move forward.
each nurse has anywhere from 4-6 patients to care for on shift. very often they need to work as teams of two or more since patients in this ward are here for the acute care required at end of life. lungs get backed up, brains stops functioning, bedridden patients need to be refreshed and washed, constipation and other forms of organ failure require constant old-fashioned nursing, and of course, as this ward is designed for, patients die with a certain regularity. a few do it quietly, some in great confusion and anxiety, many more in anger. very rarely are people discharged, though it does happen.
patients more often find themselves in beds here when their chemo or radiation treatments and the relapses they produce take them into territory where they can no longer self care. a few rebound from these palliative treatments sufficient to go home to do the rest of healing or dying there.
"healing requires taking action - it is not a passive event," said carolyn myss. myself, i'm working with a couple government programs designed to assist terminally ill people with subsidized housing and home nursing so that when i progress back to some measure of independence i will have a base camp perfectly suited to my wishes. being pragmatic, if i don't progress back, the palliative care team at this hospital has my confidence. like a wild animal, i want solitude and a certain anonymity now. institutional care gives you a version of this.
i ended up here purely for pain management, that's how i entered the stream of radiation patients. but i've become a perplexing-for-them anomaly because i don't have the broken down constitution of the other patients who took chemo and radiation on diagnosis. i'm still more or less ambulatory, i have good stats and blood panels. what's kept me here is the time its taken to keep apace of the pain flares and the lymphangitic carcinomatosis that's spread across the front of my body. the doctors acknowledged they've never seen anyone react to radiation this way, i joked i seem to have a thing about distinguishing myself that's clearly gone awry. they laughed along with me but its true.
today was the day they sent round the kindly grandmother to give me the bad news... while its hard to forecast when you're in such uncharted territory, the carcinomatosis that's invaded my lymphatics has run riot in my body to such an extent they say its a matter of weeks. although i'm a profound disassociator, the way i felt on the receiving end of this prognosis wasn't anything special. i certainly don't feel like death is imminent even after challenging days like today where the combo of physical weekness and drugs makes for a very strange headspace indeed.
yes. i can see their point. i'm in quite a lot of pain, so much so i'm taking 200-300mg hydromorphone on IV demand, plus 4mg twice daily of dexamethasone, and 50mg lyrica twice daily, with provisions for 2-4mg of versed when needed. my lungs are filling with fluid, my neck is getting encroached on both sides by wreaths of tumours, the chest wall is building an odd suit of armour which restricts range of motion in both arms... that, in conjunction with the painful tumours on breastplate make it impossible for me to hug without great care and deliberation. back to first position, yes?
maybe that's why when they were giving me the news something in me was calm and without worries as though all is as it should be. on three occasions as i was giving my case to yet another stranger these last two days, i would go to say, "these tumours have been getting bigger," motioning to the garden of my abdomen, but i would freudian-slip and say, "these tumours have been getting better." what does the unconscious mind know that the conscious doesn't?
finally, there's lots of poltergeist activity in this building. they brought in a priest for an exorcism last week to address the disembodied crying babies heard in the old birthing ward... stayed there one night, didn't bother me, but many staff refuse to work there on account of it. on the floor where i now stay there's a staff lounge room were some nurses refuse to tread. earlier this month a nurse was catching up on her collection of trash magazines when she felt something pressing down on the whole of her back. she fought against it for a few interminable seconds and then it finally relented. she won't go back. i experience the energy differently. with me its playful and whimsical. a couple times it's gently poked at me in bed as if its time to wake up. wake up silly silly girl. but then again i've also seen no break in the dealio that finds me reaching my head up off the pillow, mouth open, like a baby looking to be spoon-fed. grand recycling? which is it? does it even matter?
my body's playing tricks with me. when i got the prognosis today it felt like that. silly me being misled by a prankster body playing around with shadow puppets on the wall. as if its creating this theatre of experience so i can act out certain things that need be performed to break a spell and its the breaking of a spell that's been a long time coming. a spell i performed on myself that's got to go.
whether its accomplished in a grand recycling or a petit mort, i truly can't say. what i can say is that slowly slowly i'm getting a feel for not having a back story or agenda informing my moves. i'm even getting closer to having a real emotional response of considered finality and closure to that history instead of chasing its monkey mind forms around endlessly.
i'm ready for no mind all heart... and i'm ready for it however she chooses to come.
after lara introduced herself she went straight for 'mistress of the baby deer,' one of my art pieces hanging out in my cubicle. we got to talking about my spirit portrait project and how it lead to me taking up more elaborate portraits of shamanic archetypes, and my growing interest in putting a personal spin on icons like the tibetan tara series.
she asked if i had ever heard of lasha mutual, and indeed i had. i was taking a look at other artists' depictions of the taras and greatly enjoyed coming across her illustrative work. turns out lasha is lara's sister! we then had quite a long talk about the struggle artists face... trying to live the 24/7 devotion required to really get the best of their instrument; the evident impossibility of pulling off such a level of pure mind focus in our brave new mediaphyllic world and finally the effects this kind of radical tension and conflict of interest has on a person's financial solvency and health.
in the end it wasn't the most upbeat discovering of kinship in experience, but it did have an effect on me... hearing i was not alone in finding that old rules applied to new circumstances led only to frustration and loss. i've recently concluded that the only way to go is to focus on vision and to forget about playing the game of social media and promotion... they take your focus away from becoming the purest vehicle possible for the deva within you and put you too adroitly in the world of commerce and materiality. i don' have the energy to elaborate on this right now, maybe next time.
anyway we had a lovely late night talk and i was really moved by the human backstory to lasha's enchanting illustrations. the next time i saw lara she said she had a surprise for me...
she talked to her sister about the concordances in our experience, trying to make it work as artists in such an unhipster arena as spiritual iconography... her sister checked out my work in turn wanted me to have a print for my room. i was sorry not to have anything to give in return but i'm overjoyed like a kid on christmas to have my first lasha mutual white tara. first a note on tara...
Tara, Goddess of Peace and Protection
|
Goddess Tara is probably the oldest goddess who is still worshipped extensively in modern times. Tara originated as a Hindu goddess, a Great Goddess -- the Mother Creator, representing the eternal life force that fuels all life.
There are many embodiments of Tara, but the best known are the White Tara and the Green Tara.
The peaceful, compassionate White Tara gently protects and brings long life and peace. The more dynamic goddess, Green Tara is the "Mother Earth", and a fierce goddess who overcomes obstacles, and saves us from physical and spiritual danger.
In Sanskrit, the name Tara means Star, but she was also called She Who Brings Forth Life, The Great Compassionate Mother, and The Embodiment of Wisdom, and the Great Protectress.
Adopted by Buddhism, she become the most widely revered deity in the Tibetan pantheon. In Buddhist tradition, Tara is actually much greater than a goddess -- she is a female Buddha, an enlightened one was has attained the highest wisdom, capability and compassion. . . one who can take human form and who remains in oneness with the every living thing.
The oldest reference to the goddess Tara, perhaps, is found in an ancient saga of Finland thought to be 5 thousand years old. The saga speaks of a group known as Tar, the Women of Wisdom.
A version of the Goddess Tara exists in virtually every culture. Indeed, it is said that the Goddess Tara will assume as many forms on earth as there are needs for by the people.
The Celts called their Great Goddess Tara. Her name is thought to be the root of the word Tor, which is a mound of earth or hillock imbued with spiritual energy or connection to the other worlds.
We also hear the echo of her name in the Latin word for earth, Terra, a connection between Tara and the concept of "Mother Earth".
The Goddess Tara is also associated with Kuan Yin, the great Chinese goddess of compassion. In South America she was known as the ancient mother goddess Tarahumara.
The Cheyenne people revere the Star Woman who fell from the heavens and whose body became the earth that provided them with food.
The ancient Egyptian Goddess Ishtar who, in her myths, came to earth from the heavens and instructed her people to co-mingle and intermarry with the earthlings to give them the benefits of their learning and wisdom was yet another incarnation of the Goddess Tara.
The Cheyenne people revere the Star Woman who fell from the heavens and whose body became the earth that provided them with food.
The ancient Egyptian Goddess Ishtar who, in her myths, came to earth from the heavens and instructed her people to co-mingle and intermarry with the earthlings to give them the benefits of their learning and wisdom was yet another incarnation of the Goddess Tara.
In the legends of Tibet where the worship of the Goddess Tara is still practiced in the Buddhist tradition, it is told that the goddess Tara is the feminine counterpart of the Avalokitesvara, the Bodhisattva who is reincarnated as the Dalai Lama.
Bodhisattvas are beings who have reached enlightenment and are 'eligible' for Budda-hood but have postponed their own nirvana, choosing instead to be remain in the cycle of birth and rebirth in order to serve humanity and assist every being on Earth in achieving nirvana themselves.
It is told that Tara first appeared rising from a lotus blossom in the lake that had formed from Avalokitesvara's tears of compassion, tears that fell when he first beheld the scope of suffering in the world.
Because of her essential goodness, she was granted the right to assume her human form as a man. But Tara elected instead to remain in her womanly form.
Because of her essential goodness, she was granted the right to assume her human form as a man. But Tara elected instead to remain in her womanly form.
The Goddess Tara vowed:
"There are many who wish to gain enlightenment
in a man's form,
And there are few who wish to work
for the welfare of living beings
in a female form.
Therefore may I, in a female body,
work for the welfare of all beings,
until such time as all humanity has found its fullness."
in a man's form,
And there are few who wish to work
for the welfare of living beings
in a female form.
Therefore may I, in a female body,
work for the welfare of all beings,
until such time as all humanity has found its fullness."
One of the myths of the goddess Tara demonstrates her compassionate and loving nature and tells how she got the name "Tara of the Turned Face".
An elderly woman who was a sculptor worked in a city where there was a large Buddhist temple called the Mahabodhi (Great Wisdom). She sculpted a statue of the goddess Tara and built a shrine to house it. Upon completing the project she was filled with regret when she realized that she had not considered the placement of the shrine. "Oh no," she thought, "Tara has her back to the Mahabodhi and that isn't right!"
Then she heard the sculpture speak to her, saying "If you are unhappy, I will look toward the Mahabodhi." As the woman watched in amazement, the door of the shrine and the image of the goddess Tara both turned to face the Temple.
Such is the love and compassion of the goddess Tara.
The ancient goddess Tara in her many incarnations has many gifts to share with contemporary women. Tara embodies the feminine strengths of great caring and compassion, the ability to endure stressful and even terrifying moments, the acts of creation, and the source of sustenance and protection.
Demonstrating the psychological flexibility that is granted to the female spirit, the goddess Tara, in some of her human forms, could be quite fierce and wild.
Refugees fleeing the horrors of the occupation of Tibet by the Chinese armies recounted numerous stories of the Green Tara that protected them during their torture and guided their flight to freedom.
In other of her forms, such as the White Tara, she embodied inner peace and spiritual acceptance. She symbolizes purity and is thought to be part of every good and virtuous woman.
Tara is an archetype of our own inner wisdom. She guides and protects us as we navigate the depths of our unconscious minds, helping us to transform consciousness, our own personal journeys of freedom.
It is the goddess Tara who helps us to remain "centered". The myths of the Goddess Tara remind us of our "oneness" with all of creation and the importance of nurturing the spirit within.
for my print i chose this one... this white tara stood out to me because she was the only one in the collection who looked out in a straightforward openness towards the viewer. simple. honest. not encumbered by any kind of self-image or personal narrative, perhaps because she has arrived at a plateau where it's not necessary to have a story anymore. one would assume as much since this is a tara after all. her uncomplicated openness is the state i seek so i spotted it instantly and am overjoyed to have her company in my room as i move forward.
each nurse has anywhere from 4-6 patients to care for on shift. very often they need to work as teams of two or more since patients in this ward are here for the acute care required at end of life. lungs get backed up, brains stops functioning, bedridden patients need to be refreshed and washed, constipation and other forms of organ failure require constant old-fashioned nursing, and of course, as this ward is designed for, patients die with a certain regularity. a few do it quietly, some in great confusion and anxiety, many more in anger. very rarely are people discharged, though it does happen.
patients more often find themselves in beds here when their chemo or radiation treatments and the relapses they produce take them into territory where they can no longer self care. a few rebound from these palliative treatments sufficient to go home to do the rest of healing or dying there.
"healing requires taking action - it is not a passive event," said carolyn myss. myself, i'm working with a couple government programs designed to assist terminally ill people with subsidized housing and home nursing so that when i progress back to some measure of independence i will have a base camp perfectly suited to my wishes. being pragmatic, if i don't progress back, the palliative care team at this hospital has my confidence. like a wild animal, i want solitude and a certain anonymity now. institutional care gives you a version of this.
i ended up here purely for pain management, that's how i entered the stream of radiation patients. but i've become a perplexing-for-them anomaly because i don't have the broken down constitution of the other patients who took chemo and radiation on diagnosis. i'm still more or less ambulatory, i have good stats and blood panels. what's kept me here is the time its taken to keep apace of the pain flares and the lymphangitic carcinomatosis that's spread across the front of my body. the doctors acknowledged they've never seen anyone react to radiation this way, i joked i seem to have a thing about distinguishing myself that's clearly gone awry. they laughed along with me but its true.
today was the day they sent round the kindly grandmother to give me the bad news... while its hard to forecast when you're in such uncharted territory, the carcinomatosis that's invaded my lymphatics has run riot in my body to such an extent they say its a matter of weeks. although i'm a profound disassociator, the way i felt on the receiving end of this prognosis wasn't anything special. i certainly don't feel like death is imminent even after challenging days like today where the combo of physical weekness and drugs makes for a very strange headspace indeed.
yes. i can see their point. i'm in quite a lot of pain, so much so i'm taking 200-300mg hydromorphone on IV demand, plus 4mg twice daily of dexamethasone, and 50mg lyrica twice daily, with provisions for 2-4mg of versed when needed. my lungs are filling with fluid, my neck is getting encroached on both sides by wreaths of tumours, the chest wall is building an odd suit of armour which restricts range of motion in both arms... that, in conjunction with the painful tumours on breastplate make it impossible for me to hug without great care and deliberation. back to first position, yes?
maybe that's why when they were giving me the news something in me was calm and without worries as though all is as it should be. on three occasions as i was giving my case to yet another stranger these last two days, i would go to say, "these tumours have been getting bigger," motioning to the garden of my abdomen, but i would freudian-slip and say, "these tumours have been getting better." what does the unconscious mind know that the conscious doesn't?
finally, there's lots of poltergeist activity in this building. they brought in a priest for an exorcism last week to address the disembodied crying babies heard in the old birthing ward... stayed there one night, didn't bother me, but many staff refuse to work there on account of it. on the floor where i now stay there's a staff lounge room were some nurses refuse to tread. earlier this month a nurse was catching up on her collection of trash magazines when she felt something pressing down on the whole of her back. she fought against it for a few interminable seconds and then it finally relented. she won't go back. i experience the energy differently. with me its playful and whimsical. a couple times it's gently poked at me in bed as if its time to wake up. wake up silly silly girl. but then again i've also seen no break in the dealio that finds me reaching my head up off the pillow, mouth open, like a baby looking to be spoon-fed. grand recycling? which is it? does it even matter?
my body's playing tricks with me. when i got the prognosis today it felt like that. silly me being misled by a prankster body playing around with shadow puppets on the wall. as if its creating this theatre of experience so i can act out certain things that need be performed to break a spell and its the breaking of a spell that's been a long time coming. a spell i performed on myself that's got to go.
whether its accomplished in a grand recycling or a petit mort, i truly can't say. what i can say is that slowly slowly i'm getting a feel for not having a back story or agenda informing my moves. i'm even getting closer to having a real emotional response of considered finality and closure to that history instead of chasing its monkey mind forms around endlessly.
i'm ready for no mind all heart... and i'm ready for it however she chooses to come.
Sunday, April 27, 2014
bibliomancy...
I'm a fervent devotee of bibliomancy. The results of my trials are always and without exception truly remarkable for their synchrony, sharpness and utility.
This book was left behind by Barbara, I'd been hoping all week to take a closer look. Last night I had my first op but instead of picking it up to read I did the bibliomancy. Nicely shook by the result, I benefited greatly from another night of energy work and revelation.
The results, which I will share in their entirety, represent an important address, not only because the contents can be seen to pertain so personally to me... what we have here is a giving and provocative depiction of the road that often demands travel by those like myself who will no longer resist the call to unify sense and spirit as one does body and mind.
Time feels come to leave behind poisoned forms of old, the codices and indoctrinations that suggest we should be satisfied grasping for limited personal satisfactions in the detritus of a contra naturum sell-by-date world. I'm ready. In fact, I'm delirious for it. I learned just how much when I took this closed book into my hands and heart and opened it to page 122 where I found the following...
This book was left behind by Barbara, I'd been hoping all week to take a closer look. Last night I had my first op but instead of picking it up to read I did the bibliomancy. Nicely shook by the result, I benefited greatly from another night of energy work and revelation.
The results, which I will share in their entirety, represent an important address, not only because the contents can be seen to pertain so personally to me... what we have here is a giving and provocative depiction of the road that often demands travel by those like myself who will no longer resist the call to unify sense and spirit as one does body and mind.
Time feels come to leave behind poisoned forms of old, the codices and indoctrinations that suggest we should be satisfied grasping for limited personal satisfactions in the detritus of a contra naturum sell-by-date world. I'm ready. In fact, I'm delirious for it. I learned just how much when I took this closed book into my hands and heart and opened it to page 122 where I found the following...
DESCENT AND RE-EMERGENCE
The powerful and evocative "descent" myth with parallels in many cultures is found in several stories in this collection. The pattern is that of an oppressive or unconscious situation which leads to a crisis and a "death" or descent or initiation in darkness, followed by a resurrection or reemergence. The experience gained in this darkness sheds light on to the whole being and through this experience we are irrevocably changed and empowered. This pattern is also found in the myths of Persephone and Psyche, the ancient Sumerian myth of "The Descent of Inanna," in the Greek initiation rites, in Shaman initiatory ceremonies, and in fairytales like "Sleeping Beauty," "Briar Rose," "The Handless Maiden," "The Seven Ravens," the tales of Mother Hulda, and Baba Yaga. It has also been observed by modern psychologists such as Sylvia Perera, Maria Von Franz, and Nor Hall. Other women who, without role models or guidance except from each other, have sought to integrate themselves spiritually while living in a patriarchal culture, have also discovered this cycle. If the descent myth is properly understood it can be of tremendous use, because it is a key to the universal initiation process, which we must take part in if we are to develop and understand ourselves. These experiences touch such a deep level that if we can integrate them again, we can undergo a conscious rebirth; rather than being unconsciously shaped by social pressures and customs.
We can appreciate and grow from our black periods, treating them as springboards rather than useless digressions. We can learn the difference between being passively drawn into darkness, and voluntarily choosing an active entry into the veiled world. We can see what and who is necessary to help us digest and incorporate the insights gained during our descents, be they voluntary or forced upon us.
In this collection of stories the biography of Nangsa Obum most clearly illustrates the descent myth. It is a "delog" ('das log) story, the story of a person who dies and is then resurrected.
I would like to look at some of the events in the life of Nangsa Obum and to see their spiritual psychological meaning in terms of the death and resurrection process.
First, the birth of a heroine or hero in many fairytales comes after a period of sterility followed by the birth of a supernatural child. In our own lives very often we may go through a period of brooding and stopping and starting projects, or just not doing extended of anything, before a major transformation or piece of creative work comes forth. In Nangsa Obum's case her parents were doing much meditation on the goddess Tara, without any selfish motives, and this activity produced a miraculous result. This could be understood as the necessity of proceeding in a direction which we feel is good and right even when no material gain is foreseen.
Throughout her childhood Nangsa was a classic example of a 'good girl'; her parents were pleased with her "even though she is a girl." This statement indicates the Tibetan preference for boy babies. When I went to Nepal recently, a woman who was supposed to be a 'yogini' told my pregnant friend that if she said 100,000 prayers to Padma Sambhava, she would be sure to have a boy, not, heaven forbid, a girl.
At any rate, Nangsa in her childhood was so 'good' she overcame this 'disadvantage'; however, she decided she would not marry but would become a yogini instead. She never questioned that this would be her future until she reached puberty. At this point her beauty began to shine forth and in spite of herself she attracted many suitors. Eventually the protective shell of the mother was broken by the Rinang king, who snatched her up "Like an eagle falling upon a small bird," to be the bride of his son.
This motif is common in fairytales: "The original protected state is experienced as one of psychic unity (one we look back upon as the experience of childlike wholeness) is broken into by the emergence of the archetype of the Great Father and his emissaries. Fairytales usually depict this event in the coming the king's son, the prince who represents the father.
Here Nangsa actually has no choice in the matter; although she expresses her wish not to be married to anyone, even a prince, her parents think it is a great match for her and are afraid to refuse. Since Tibet was a medieval society the local kings had power over the populace and if someone dared to refuse the desires of a king the results could be horrendous. We see this in the life story of Yeshe Tsogyel when she refused to marry a local king: "the official whipped me with a lash of iron thorns, until my back was a bloody pulp, and unable to bear the pain, I stood up and accompanied them."
Neither the king of Rinang nor the prince who wanted to marry Tsogyel cared a whit for what was inside these women. They both possessed the mixed blessing of great beauty, which Tibetans see as a result of good karma, and a desire to renounce worldly life. The king hardly ever sees Nangsa as human, and in fact asks her if she is human or the daughter of a god, a celestial musician, or a serpentine spirit. He sees her as a beautiful piece of merchandise to be possessed for the aggrandizement of his family.
Even in the twentieth century, we as women may be threatened with a beating for expressing our spirituality or not wanting to marry someone, or we may find ourselves getting into and remaining in negative relationships because patriarchal society teaches a woman that she must be with a man in order to validate herself. If a woman is young and at a point of inner hesitation, it might be a relief if a man defines her life for her. If she falls into this trap and then later tries to assert her individuality, she will meet with tremendous resistance, perhaps even violence. When a woman's own desires begin to conflict with the man's needs, there is an explosion and the anima projection (when a man projects his unconscious feminine side on to a woman) collapses; or she gives in and continues to suppress her own individuality and lives out his projection. If she does this she may try to maintain an inner life of her own, but the conflict between her inner and outer worlds, and her imprisonment in the service of his psychological needs, will inevitably cause her to live in a semi-somnambulant state of depression.
This explosion comes to Nangsa in the form of being beaten to death. But before her "death" the impossibility of her situation already comes to consciousness when she encounters the yogis, who point out the uselessness of her present life, and again when Sakya Gyaltsen manifests as a handsome beggar with a monkey. His choice of beggar and monkey is an interesting symbol. He is a beggar because Nangsa's spirituality is 'begging' for attention, and is impoverished. Yet he is handsome, not only to raise the suspicions of the father-in-law, but because her deep longing for her individuality is beautiful. It might seem strange that a guru who is supposed to emanate compassion would aggravate an already painful situation as Sakya Gyaltsen did, but it is often the case that the teacher will submit the disciple to hardships in order to purify his or her karma and speed up progress on the path. In this case he also foresees the she must have this 'delog' experience in order eventually to be able to help others.
The monkey symbolizes something which is captured and trained to imitate. It is captured because its appearance is charming, and then through painful training its natural instincts are controlled and it becomes a source of entertainment for free human beings. The beggar uses the monkey, and several other animals such as the parrot, as examples of Nangsa's situation. Finally he tells her that if she does not give him a substantial offering she is no better than the paintings in the temple. This means that unless she is willing to make a substantial commitment to her true self, she will remain a superficial woman, no deeper than a two-dimensional painting.
Although Nangsa appears to be fulfilling her role as a loving wife and mother, she is secretly longing to go into retreat and practice meditation. She is isolated from her experience because of the undercurrent of this unfulfilled longing. So her separation from her husband at the time of her 'death' is actually an amplification of a separation which has been running under the surface the whole time.
By staying silent and not defending herself from Ani Neymo's jealous accusations against her, she unconsciously provokes the confrontation which forces her out of her stagnant, depressing, obedient phase. Her exaggerated gifts to the yogis and the beggar are further unrepressible instinctive actions which bring on her descent and the eventual resolution of the situation. Many women experience this helpless 'no way out' feeling after marriage and children. They have given themselves, and they feel that if they are not happy they have failed. Old desires for fulfillment have remained unsatisfied and undermine the situation. The woman in this situation is restless and sad even when she has 'everything' that she is told should make her happy. Usually a woman does not see that this discontentment is caused because she has lost her own power, but sees it as a personal failure or incapacity. So she continues to try to find ways to find satisfaction within the context she has chosen, but usually she cannot and the demon of depression continually rears its ugly head.
Nangsa was conditioned by her culture and her mother not to trust her ability to follow the life of a yogini. We see this when her mother says:
"If you really want to practice the dharma, it is very difficult.
If you think like this why did you have a baby?
Do not try to do what you are not incapable of doing.
Practicing the dharma.
Do what you know how to do.
Be a housewife."
"You are like a little sheep, who does not want to stay with the other sheep and be fleeced. So do not be sorry if you are sent to the butcher!"
Although Ani Nyemo appears as a negative figure who just stirs up trouble, in fact if it had not been for Ani Nyemo, who brought the situation to a head, Nangsa might have just gone on in a silent depression all of her life. Ani Nyemo causes a confrontation between the collective standards represented by the palace life and Nangsa's inner spiritual life. This confrontation eventually leads to Nangsa's release from this dualistic situation.
Ani Nyemo also represents the devalued feminine. She turns against Nangsa because, rather than seeing her as a sister, someone to share with, she sees her as a competitor. A situation dominated by male power often has this effect on women. Rather than identifying with each other, women turn against each other in competition for the males who hold the power. When women are denigrated they become twisted and negative; we do not like ourselves and we see other women negatively, looking for ways to devalue them in the eyes of men so that we can receive the favours of the oppressors.
At this point in the story of Nangsa there are two motifs which are found in Western fairytales. In "The Handless Maiden" an innocent girl, through the plotting of a devil, is misunderstood by her husband and is driven into the forest, where she lives alone. "She is driven into nature where she has to find the connection to the positive animus within, instead of functioning according to the collective rules. She has to go into deep introversion. The forest could equally well be the desert, or an island in the sea, or the top of a mountain."
In Nangsa's case she 'descends' into hell, and through her experiences there she comes back to life understanding herself more deeply and she no longer suppresses her spiritual longings. They have been validated by her miraculous coming back to life.
In another fairy tale called "The Seven Ravens," a girl has a project of turning her brothers back into humans from ravens, and in order to do this she must not talk or laugh for six years and must make shirts made of star flowers for each of them. During this time she is married to a king and she leads a double life, continuing her silence and working on the shirts as well as her wifely duties. Her mother-in-law stirs up trouble by taking the children away and then accusing her of murdering them. Von Franz analyzes this story like this:
Although she is productive and has fulfilled her normal feminine life, yet there is something going on behind the screen, a second process, which leads to misunderstandings. Sometimes the step-mother, or the mother-in-law, can alienate the king from his wife. Then she is slowly driven into complete isolation and her heroic deed consists in keeping silent; but the pressure in the situation does not force her to disclose her secret, in spite of the threat to her life. She stands the misunderstanding of those around her and her highest endeavour is applied to keeping the religious secret... Keeping the discussion within, and not allowing disruptive forces to bring it into the open and destroy it, is one of the ultimate vital battles in the process of individuation.
Nangsa protects her spiritual process with silence. Often, deep inner processes must be kept secret; otherwise they will be frozen or distorted by those whose values remain in the materialistic world, like Nangsa's husband and in-laws.
The 'death' of Nangsa itself has great archetypal significance, for similar motifs are reported in shamanic traditions, ancient Greece, and here in Tibetan initiation ceremonies, in the story of Jomo Memo, and even in the long retreats of some of the other women in this book.
The pattern is basically one of initiation. Initiation is an active choice to enter into darkness. It is a conscious closing off of the sunlit world and entry into into the deeper parts of one's being. In Tibetan initiations one is given a red band of cloth which is symbolically placed over the eyes during the initiation. One enters a different dimension by passing through darkness.
In ancient Greece at the site of the oracle cave of Zeus - Trophonios - the oracle seekers had to lower themselves into a cave through a small hole similar to a birth canal, and after three days they were helped out by 'therapeutes' or helpers.
The shaman initiatory rites were very similar to the 'delog' descent. In Central Asia the Yakut shamans recount how "the evil spirits carry the future shaman's soul to the underworld and there shut it up in a house for three years (only one year for lesser shamans). Here the shaman undergoes his initiation. The spirit cuts off his head, which they set aside (for the candidate must watch his own dismemberment) and cut him into small pieces, which are then distributed to the spirits of the various diseases. Only by undergoing such an ordeal will the future shaman gain the power to cure. His bones are then covered with new flesh and in some cases he is also given new blood.
It is quite possible that the delog stories and the Chod ritual in Tibet descend from this kind of shamanistic ceremony. However, the difference is that the delog is catapulted into the underworld involuntarily. In the Tibetan delog stories in most cases a grave illness precedes the journey to the underworld. "Before the journey the delog has terrible visions and hallucinations, he imagines himself in the middle of frightening storms and whirlwinds, he hears a fearful noise, and he believes himself attacked by mighty hailstorms, which shatter his bones and lacerate his head, he feels like a shipwrecked man at the bottom of the sea or as if thrown to the heights of the sky, he believes himself dead, for the real world disappears from his view and he sees the world of the hereafter.
The delog, like the shaman, returns from the underworld empowered by the experience and an authority of life and death. This information is used to convince the living that the results of their actions in this world will reap results in the hereafter.
The journey into the underworld experienced in depression can also have this function. A depression can lead to the depths of oneself and dark deadness, which if used properly - and if the sick person pulls through it - can be like the introversion of the hermit who voluntarily enters the bedrock of himself and emerges with a knowledge that can help others. This experience can become a jumping-off point which allows growth and rebirth to take place. The important thing is that, when the person re-emerges, he or she is able to remember and make use of the descent experience, for otherwise it serves no purpose.
A-Yu Khadro, Jomo Memo, Drenchen, and Machig Ongmo all underwent years of voluntary isolation in order to reach the deeper states of consciousness. A-Yu Khadro literally dwelled in darkness for many years, developing inner lights through her Dzog Chen practice, which requires complete darkness. These were all voluntary descent experiences.
Western women emerging from crisis situations also often choose to live alone, intuitively knowing that the confrontation with oneself that this brings will lead to a deeper understanding. These women in our society (which sees them as pitiable and unfortunate) can take strength from the stoires of these Tibetan yoginis.
These Western women also seek the support of other women or psychotherapists to help them to emerge from their descents, just as the yoginis sought the guidance of their teachers and spiritual friends, and the Greeks needed the help of the 'therapeutes' to make sense of the memories they brought back from the oracle cave.
Speaking of the descent myth in terms of her experiences in controlled therapeutic regressions, Jungian analyst M.L. Von Franz describes the descent process in relation to the story of "The Handless Maiden":
In the Middle Ages there were many hermits, and in Switzerland there were the so-called Wood Brothers and Sisters. People who did not want to live a monastic life but who wanted to live alone in the forest had both a closeness to nature and also a great experience of spiritual inner life. Such Wood Brothers and Sisters could be personalities on a high level who had a spiritual fate and had to renounce active life for a time and isolated themselves to find their own inner relation to God. It is not very different from what the shaman does in the Polar tribes, or what medicine men do all over the world, in order to seek an immediate personal religious experience in isolation.
Because re-emerging people have often undergone a reevaluation of themselves, and the knowledge gained makes them 'different,' they can be seen as threatening to those who knew them before. Nangsa's husband and relatives found her threatening in her decisiveness. Jomo Memo was so changed after her experiences in the cave of Padma Sambhava that she was called a demoness ("memo") and had to leave her native land. She found in Guru Chowang someone who could understand the knowledge she had gained and guide her in her further development.
Up to the point of her 'death' Nangsa had been 'good,' fulfilling the expectations of the collective standards that surrounded her. After her descent she realized that complying with these standards was not genuine goodness and did not lead to a positive result. Goodness is not necessarily truth, and through her experience she gained the courage and confidence in herself to follow her heart.
Her final break with submission came when she returned to her parents for a visit after her delog experience. It is interesting that the final confrontation came when she was weaving. Weaving has traditionally been the work of women. Women weave the fabric of familial life, they weave genes and blood and nourishment to make children. Nangsa was sitting in a loom harness singing a song about how she had been woven into a pattern which was not of her choice. This song irritated her mother to such an extent that she became furious. But Nangsa could not be intimidated as she had been before and insisted that she would find a way to leave in order to unite her internal longings with her external situation. When her mother threw her out and kept her son, Nangsa gathered together her courage and finally departed to find her guru. She had to face the loss of her son and the frightening journey into the unknown. She realized the sadness of this loss but saw that this emptiness also created the possibility of finally leaving a situation which had been wrong for her for a long time. "Having and knowing that bedrock of self-validation and belief is very important, because it enables us to take risks and function in the world with courage without being paralyzed by fear of disapproval or disapproval itself."
Nangsa shows heroic qualities throughout her life, but her courage at this point is really amazing. She not only risks the severe wrath of her husband and father-in-law, but she has also been abandoned by her mother and her son has been taken away. However, her courageous step is validated in the end when the power of her teacher and herself triumphs over the material strength of her husband's army. The end result of her choice to follow her heart's longing is the elevation of all those involved. Had she not made this choice, not only she, but everyone else, would have been degraded in the process.
If we avoid the descent because of fear of what we will discover about ourselves in the 'underworld,' we block ourselves off from a powerful transformative process. This process has been recognized by modern psychologists and ancient mystery religions alike.
Saturday, April 26, 2014
radical self-acceptance...
i'm in the labyrinth and the magic continues to unravel me.
now that a course of palliative radiotherapy has been completed (20 Gy in 5 fractions to the spine and pelvis) we are in observation mode for the next 2-6 weeks. thus far i'm getting the 'side-effects' and none of the benefits but i was prepared for this. the tradeoff means that i can see clearly the trajectory at work and where the weak lines are in my constitution. main challenges are the profound fatigue (i was out of bed infrequently last two days, very not normal for me), the global pain spikes and accelerated tumour growth. working in my favour is that all this action is contained within the skin and soft-tissues, vital force is keeping the cancer out of organs of importance... so even while it encroaches on bones, the mets have not compromised structure or function. even my doctor in his report concedes, "her lab work actually is not impressive," meaning aside from this tuitional cancer, i persist to be quite healthy.
the important point here is that i'm continuing to manage the pain and keep to an even keel. this in turn gives me the chance to resume my meditation-based energy work and movement practices (which i now do from bed). i'm getting all the food and supplements i need from a rotating crew of friends and allies, alongside round the clock emotional support. this emotional support doesn't come in the form of sympathy or condolence (which is passive and reducing) but in the opportunity to come together to do some exciting experimentation and venturing (which is active and full of possibility).
that's why i refer to the labyrinth. its taken me up until now to finally get to the set and setting i've long desired but didn't know how to manifest, lost as i was in the overproduct of mind... and now i have it. spiritual practice, devotion to energy work, doing the daily alchemy of becoming pure un-armoured heart.
having set these as the course of my ship, the resources and people suited to such an enterprise have found me and me them in a manner that leaves us all both humbled and awestruck.
for example, through the efforts of the palliative doctor now in charge of my case, i've been assigned a very special nurse you would hardly expect to find in the whitecoat world... she's a teacher of kundalini yoga and a reiki master but this is not the reason we sparked an instant connection (i've had plenty experiences these last few months of the dark side of alternative practitioners who try to situate themselves in positions of power and exploitation... as a result I've learned its not the modality you work with, its how you work with it). we sparked connection because of our interest in active, not passive, models of healing (like Adam DreamHealer) where people share their skills and understandings with a view to healing the whole not parts (meaning not just the disease but the person and not just the person but the tribe)...
with her now assigned to my case we can actually steal away time to session our interests... the other day we worked with reiki and some chanting and the results were lovely. i was able to reduce from 10 boluses to 6 overnight; while in the dark, i shifted in and out of dimensions and resonances and holy flow, playing it all back out again in breath, in languorous, ecstatic movements, small as they were, investigatory and cautious, no beginning, no end.
my body is asking that i practice radical self-acceptance. its become my joy and my light to venture to meet myself in this garden...
now that a course of palliative radiotherapy has been completed (20 Gy in 5 fractions to the spine and pelvis) we are in observation mode for the next 2-6 weeks. thus far i'm getting the 'side-effects' and none of the benefits but i was prepared for this. the tradeoff means that i can see clearly the trajectory at work and where the weak lines are in my constitution. main challenges are the profound fatigue (i was out of bed infrequently last two days, very not normal for me), the global pain spikes and accelerated tumour growth. working in my favour is that all this action is contained within the skin and soft-tissues, vital force is keeping the cancer out of organs of importance... so even while it encroaches on bones, the mets have not compromised structure or function. even my doctor in his report concedes, "her lab work actually is not impressive," meaning aside from this tuitional cancer, i persist to be quite healthy.
the important point here is that i'm continuing to manage the pain and keep to an even keel. this in turn gives me the chance to resume my meditation-based energy work and movement practices (which i now do from bed). i'm getting all the food and supplements i need from a rotating crew of friends and allies, alongside round the clock emotional support. this emotional support doesn't come in the form of sympathy or condolence (which is passive and reducing) but in the opportunity to come together to do some exciting experimentation and venturing (which is active and full of possibility).
that's why i refer to the labyrinth. its taken me up until now to finally get to the set and setting i've long desired but didn't know how to manifest, lost as i was in the overproduct of mind... and now i have it. spiritual practice, devotion to energy work, doing the daily alchemy of becoming pure un-armoured heart.
having set these as the course of my ship, the resources and people suited to such an enterprise have found me and me them in a manner that leaves us all both humbled and awestruck.
my fabulous primary care nurse, jirina, after a guerrilla energy medicine session |
for example, through the efforts of the palliative doctor now in charge of my case, i've been assigned a very special nurse you would hardly expect to find in the whitecoat world... she's a teacher of kundalini yoga and a reiki master but this is not the reason we sparked an instant connection (i've had plenty experiences these last few months of the dark side of alternative practitioners who try to situate themselves in positions of power and exploitation... as a result I've learned its not the modality you work with, its how you work with it). we sparked connection because of our interest in active, not passive, models of healing (like Adam DreamHealer) where people share their skills and understandings with a view to healing the whole not parts (meaning not just the disease but the person and not just the person but the tribe)...
with her now assigned to my case we can actually steal away time to session our interests... the other day we worked with reiki and some chanting and the results were lovely. i was able to reduce from 10 boluses to 6 overnight; while in the dark, i shifted in and out of dimensions and resonances and holy flow, playing it all back out again in breath, in languorous, ecstatic movements, small as they were, investigatory and cautious, no beginning, no end.
my body is asking that i practice radical self-acceptance. its become my joy and my light to venture to meet myself in this garden...
necrotic forces of destruction, they love shame! so i've instituted radical self-acceptance practices like going topless... loving your body as a matter of course is self-healing at its very finest! |
Wednesday, April 23, 2014
burn baby burn...
so grateful for a lucid moment to update...!
got to a crossroads mid-march, had to get onboard and actional about how i do my life. knew making my moves would bring new stresses to table, but it was a necessary, inevitable gamble and i have zero regrets.
of course the moment i jumped from the known into the unknown, implementing these big changes as gracefully and efficiently and compassionately as possible, i couldn't help but soothe myself old style by pressing forward in my work as if i had a savings account of energy to bank on. not only did i complete that training in colon hydrotherapy, i completed two other courses with Dr. Gabor Maté... one on the biology of abuse that was geared to pros working with troubled youth in the justice system; the second on the roots of addiction, and its expression from substance abuse to workaholism, this one geared to social workers and health care providers.
by the end of the second course i had to acknowledge i was running on empty. i had been having less and less success managing my pain since the start of april as it was, but within 24 hours of finishing the addiction course (LOL) i was no longer able to get thru the day or night without chewing down hourly on percocets. though i was tolerating the meds well all considered, i was totally beyond the liver toxicity zone for the amount of acetaminophen in the perks.
things happened awfully fast. just after the courses and after a terrible night, i had no choice but to get to a hospital morning saturday 12 april. the first three days of hospital experience were simply awful. my friend barbara's working experience with the system (she cares for brain injured patients at a variety of institutions) proved absolutely indispensable. i often couldn't speak for myself, she knew exactly how to keep us moving forward thru the most infuriating obstacles, i'm ever in her debt.
my first ER doctor tried to send me home with a script for Tylenol. twelve agonizing hours later a palliative radiologist got involved and some imaging and scans were finally done... the first round showed the cancer had sprung back to life, sending its coaches into bone, specifically the pelvis, hips and a few spots on the spine. he revised the tylenol prescription, wrote up a thwack of other narcotic scripts, pumped me up on a few boluses of morphine, and then sent us home with a view to work out the next step in a few days.
we were not entirely keen on this as the pain management thing had still not been successfully sorted. every few hours an episode would strike that took my breath and strength away. with no obvious wound or blatant physical injury to point to, i was often being treated like a soft-skinned complainer looking for narcs. so delirious with pain i was quite beyond registering this, it fell to barb to navigate our way. she refused to leave the hospital until it was understood that we would be returning if the new meds failed in any way to address the escalating pain episodes... and by coming back she meant straight into a bed, not left to wait hours for triage and care.
so we left and the hilarity began. the first pharmacy we were directed to didn't in fact have the meds, so they sent us to another. this pharmacy had the meds but they found a revision the MD had made in the script that he didn't initial, so we had to go back to get this rectified. meantime the clock was ticking on the morphine that was injected to cover me off the transition to orals. i was already feeling another episode collect in the wings. we got to the pharmacy with minutes to spare before they shut down for the night. i don't remember much about the next twelve hours, but the new meds failed fast and by 5 the next morning we were headed back to ER in another acute phase.
gone were the staff from the night before and we had to start the process all over again. i was shellshocked by the escalations going on. each acute brought new levels of agony and it seemed there was no relief in sight. never truly out of pain and saddled with nurses and MDs taking a laboriously cautious approach. it wasn't until we had three successive days of imaging that the tide turned... suddenly everyone could see in hard and fast depictions the reason i was in such escalating agony... from a few spots on the spine we saw the entire column get covered in mets in just a few days. at last i was being taken seriously.
we were able to graduate from a stretcher in the hall to a satellite ward where i was hooked up to IV and getting some periods of pain management. i was still not pain-free at any time, but i could at least see straight and the acutes that inevitably came got reduced as my requests for more meds got compiled and finally translated into higher dosage allowance. i always thought hospital was at least a harbour of last resort, a place where if nothing else they could and would address your pain... this proved not quite the case. instead i had more than a few occasions to loose faith in humanity and in nurses in particular. thankfully on the heels of each disappointment came so many beautiful angels! in fact, as we went more deeply into the hospital experience while still holding firm to our agenda, the angels became definitely more numerous.
still, i often wondered how those who didn't have family or friends around to help them out, how they coped with the lacking sense of urgency or compassion we all witnessed... patients were often left for hours without access to water or toilet, i felt so spoiled to never be alone... i confess i crossed the line several times, asking my friend to see to this or that other patient in the ward with us, i couldn't help it. it bothered me so much to see the a breezy lack of interest in doing anything beyond the minimum on show everywhere... i've never understood not putting your back into the day's work, i never will.
anyway, to make a long short short, and i'm truly glossing over a very intense and absorbing adventure, we ended up in the palliative oncology ward. once i got the lay of the land and my new normal i saw my needs twofold... on the one hand i had to do what i could to get control of my pain, because when i'm out of pain i can function and if i can function i can continue to hunt healing, no matter how stacked the odds continue to appear. miracles are miracles because they maintain their impossibility factors. i was consulted by both the radiologist and oncologist. nothing about chemo persuaded itself to me, that hardly needs explaining. but i looked into the use of radiation for palliation and i decided to gamble. its an odd trade off... the radiation might make it harder for the cancer to penetrate bone, it might also reduce bone met pain allowing me to reduce the amount of hydromorphone i'm IVing, it might also preserve the structure of my bones longer which will keep me on my feet longer. the gamble is that while pursuing that outcome it could also make my pain worse, give metastatic cancer in other parts of the body an edge, or cause an acute inflammatory response. so far its done all those things.
once i had the imaging on record (all new X-rays, CT and MRIs) and my pain could be taken seriously, i got outfitted with a properly-for-me calibrated pain pump that i now use to control my needs. the pump works by delivering a baseline level of medication over the course of a day. the bulk of my med comes on demand by me, these are called boluses. the few times i missed giving myself a bolus i got a sharp reminder of what's going on behind the scenes. i don't take anything for granted but i also don't pre-medicate. i've learned how to dance with the pump.
since admitted to hospital i now know the extent to which i have tumours everywhere. i know the invasion of my pelvis has also produced spots on the external hips... when i was having pain spikes the bulk of my agony was in the lower back with pain radiating into the legs, especially the L leg where the pain extended into the knee bone and sometimes all the way into the tibia. there's also evidence of a large fibroid mass in either uterus or ovary (we're not doing further tests at this point, whether those fibroids are in the uterus or on an ovary makes no difference), i also have tumours throughout the torso, particularly in the armpits, along the ribs, crisscrossing the abdomen, down the inguinal lines, and along the spine in the paraspinals. finally, i've got impressive ones growing along the clavicles and up into the neck, more so on the L side than right, and a couple small tumours at the occiput.
its easy to see why the white coats conclude me to be among the short list of goners. i can feel changes in the lungs, there has been fluid collecting in the pleural linings making it hard to take a deep breath, but i've been able to keep my O2 levels up, esp now that i'm managing my pain and can stay out of hyperventilation.
i decided to start the radiation right away, we got two treatments in before the easter weekend, then we restarted on the monday and today i had my last treatment. we will observe now for a period of anywhere from 2-6 weeks, it can take that long for the effects of radiation to fully express. so far i have that spectacular new lymphatic skin rash to contend with alongside the rapid growth of tumours, new and old. i'm taking lots of hydromorphone just to function, but being able to function means i can get laser-tight on my focus. part of the restructuring i chose to embrace over a month ago was principally about securing for myself exactly this kind of solitary staging... i need to be in authentic space, naked with my truth and values, able to do things my way according to conscience, all in order to give this effort the due required. dying well or healing well are the very same enterprise.
meantime i'm aiming to be out of hospital next week. a community and a theatre of miracles has come into manifestation around me the second i crossed over into clear crisis, its so very humbling and remarkable, i feel blessed and enraptured by what lies ahead. i have no fear, just wonder, commitment and excitement.
i'm also quite enjoying the thinness of veils with me now, how easy it is for me to pass back and forth between different layers of reality. i've had many nonmaterial visitors and stagings. one thing that happens a lot when i'm resting, i keep waking myself up, mouth open like a baby, expecting some mana from heaven to be spooned into my mouth... its so realistic i'm every time surprised to find i'm hallucinating it all. talking to myself at night a lot as well, feel sorry for my roommate. then this morning the police came to tell me they were now involved in the retrieval of a precious stone that had gone missing. of course when i opened my eyes there was no one there.
got to a crossroads mid-march, had to get onboard and actional about how i do my life. knew making my moves would bring new stresses to table, but it was a necessary, inevitable gamble and i have zero regrets.
of course the moment i jumped from the known into the unknown, implementing these big changes as gracefully and efficiently and compassionately as possible, i couldn't help but soothe myself old style by pressing forward in my work as if i had a savings account of energy to bank on. not only did i complete that training in colon hydrotherapy, i completed two other courses with Dr. Gabor Maté... one on the biology of abuse that was geared to pros working with troubled youth in the justice system; the second on the roots of addiction, and its expression from substance abuse to workaholism, this one geared to social workers and health care providers.
by the end of the second course i had to acknowledge i was running on empty. i had been having less and less success managing my pain since the start of april as it was, but within 24 hours of finishing the addiction course (LOL) i was no longer able to get thru the day or night without chewing down hourly on percocets. though i was tolerating the meds well all considered, i was totally beyond the liver toxicity zone for the amount of acetaminophen in the perks.
things happened awfully fast. just after the courses and after a terrible night, i had no choice but to get to a hospital morning saturday 12 april. the first three days of hospital experience were simply awful. my friend barbara's working experience with the system (she cares for brain injured patients at a variety of institutions) proved absolutely indispensable. i often couldn't speak for myself, she knew exactly how to keep us moving forward thru the most infuriating obstacles, i'm ever in her debt.
my first ER doctor tried to send me home with a script for Tylenol. twelve agonizing hours later a palliative radiologist got involved and some imaging and scans were finally done... the first round showed the cancer had sprung back to life, sending its coaches into bone, specifically the pelvis, hips and a few spots on the spine. he revised the tylenol prescription, wrote up a thwack of other narcotic scripts, pumped me up on a few boluses of morphine, and then sent us home with a view to work out the next step in a few days.
we were not entirely keen on this as the pain management thing had still not been successfully sorted. every few hours an episode would strike that took my breath and strength away. with no obvious wound or blatant physical injury to point to, i was often being treated like a soft-skinned complainer looking for narcs. so delirious with pain i was quite beyond registering this, it fell to barb to navigate our way. she refused to leave the hospital until it was understood that we would be returning if the new meds failed in any way to address the escalating pain episodes... and by coming back she meant straight into a bed, not left to wait hours for triage and care.
so we left and the hilarity began. the first pharmacy we were directed to didn't in fact have the meds, so they sent us to another. this pharmacy had the meds but they found a revision the MD had made in the script that he didn't initial, so we had to go back to get this rectified. meantime the clock was ticking on the morphine that was injected to cover me off the transition to orals. i was already feeling another episode collect in the wings. we got to the pharmacy with minutes to spare before they shut down for the night. i don't remember much about the next twelve hours, but the new meds failed fast and by 5 the next morning we were headed back to ER in another acute phase.
gone were the staff from the night before and we had to start the process all over again. i was shellshocked by the escalations going on. each acute brought new levels of agony and it seemed there was no relief in sight. never truly out of pain and saddled with nurses and MDs taking a laboriously cautious approach. it wasn't until we had three successive days of imaging that the tide turned... suddenly everyone could see in hard and fast depictions the reason i was in such escalating agony... from a few spots on the spine we saw the entire column get covered in mets in just a few days. at last i was being taken seriously.
we were able to graduate from a stretcher in the hall to a satellite ward where i was hooked up to IV and getting some periods of pain management. i was still not pain-free at any time, but i could at least see straight and the acutes that inevitably came got reduced as my requests for more meds got compiled and finally translated into higher dosage allowance. i always thought hospital was at least a harbour of last resort, a place where if nothing else they could and would address your pain... this proved not quite the case. instead i had more than a few occasions to loose faith in humanity and in nurses in particular. thankfully on the heels of each disappointment came so many beautiful angels! in fact, as we went more deeply into the hospital experience while still holding firm to our agenda, the angels became definitely more numerous.
still, i often wondered how those who didn't have family or friends around to help them out, how they coped with the lacking sense of urgency or compassion we all witnessed... patients were often left for hours without access to water or toilet, i felt so spoiled to never be alone... i confess i crossed the line several times, asking my friend to see to this or that other patient in the ward with us, i couldn't help it. it bothered me so much to see the a breezy lack of interest in doing anything beyond the minimum on show everywhere... i've never understood not putting your back into the day's work, i never will.
anyway, to make a long short short, and i'm truly glossing over a very intense and absorbing adventure, we ended up in the palliative oncology ward. once i got the lay of the land and my new normal i saw my needs twofold... on the one hand i had to do what i could to get control of my pain, because when i'm out of pain i can function and if i can function i can continue to hunt healing, no matter how stacked the odds continue to appear. miracles are miracles because they maintain their impossibility factors. i was consulted by both the radiologist and oncologist. nothing about chemo persuaded itself to me, that hardly needs explaining. but i looked into the use of radiation for palliation and i decided to gamble. its an odd trade off... the radiation might make it harder for the cancer to penetrate bone, it might also reduce bone met pain allowing me to reduce the amount of hydromorphone i'm IVing, it might also preserve the structure of my bones longer which will keep me on my feet longer. the gamble is that while pursuing that outcome it could also make my pain worse, give metastatic cancer in other parts of the body an edge, or cause an acute inflammatory response. so far its done all those things.
once i had the imaging on record (all new X-rays, CT and MRIs) and my pain could be taken seriously, i got outfitted with a properly-for-me calibrated pain pump that i now use to control my needs. the pump works by delivering a baseline level of medication over the course of a day. the bulk of my med comes on demand by me, these are called boluses. the few times i missed giving myself a bolus i got a sharp reminder of what's going on behind the scenes. i don't take anything for granted but i also don't pre-medicate. i've learned how to dance with the pump.
since admitted to hospital i now know the extent to which i have tumours everywhere. i know the invasion of my pelvis has also produced spots on the external hips... when i was having pain spikes the bulk of my agony was in the lower back with pain radiating into the legs, especially the L leg where the pain extended into the knee bone and sometimes all the way into the tibia. there's also evidence of a large fibroid mass in either uterus or ovary (we're not doing further tests at this point, whether those fibroids are in the uterus or on an ovary makes no difference), i also have tumours throughout the torso, particularly in the armpits, along the ribs, crisscrossing the abdomen, down the inguinal lines, and along the spine in the paraspinals. finally, i've got impressive ones growing along the clavicles and up into the neck, more so on the L side than right, and a couple small tumours at the occiput.
its easy to see why the white coats conclude me to be among the short list of goners. i can feel changes in the lungs, there has been fluid collecting in the pleural linings making it hard to take a deep breath, but i've been able to keep my O2 levels up, esp now that i'm managing my pain and can stay out of hyperventilation.
i decided to start the radiation right away, we got two treatments in before the easter weekend, then we restarted on the monday and today i had my last treatment. we will observe now for a period of anywhere from 2-6 weeks, it can take that long for the effects of radiation to fully express. so far i have that spectacular new lymphatic skin rash to contend with alongside the rapid growth of tumours, new and old. i'm taking lots of hydromorphone just to function, but being able to function means i can get laser-tight on my focus. part of the restructuring i chose to embrace over a month ago was principally about securing for myself exactly this kind of solitary staging... i need to be in authentic space, naked with my truth and values, able to do things my way according to conscience, all in order to give this effort the due required. dying well or healing well are the very same enterprise.
meantime i'm aiming to be out of hospital next week. a community and a theatre of miracles has come into manifestation around me the second i crossed over into clear crisis, its so very humbling and remarkable, i feel blessed and enraptured by what lies ahead. i have no fear, just wonder, commitment and excitement.
i'm also quite enjoying the thinness of veils with me now, how easy it is for me to pass back and forth between different layers of reality. i've had many nonmaterial visitors and stagings. one thing that happens a lot when i'm resting, i keep waking myself up, mouth open like a baby, expecting some mana from heaven to be spooned into my mouth... its so realistic i'm every time surprised to find i'm hallucinating it all. talking to myself at night a lot as well, feel sorry for my roommate. then this morning the police came to tell me they were now involved in the retrieval of a precious stone that had gone missing. of course when i opened my eyes there was no one there.
"Dream lofty dreams, and as you dream, so shall you become. Your vision is the promise of what you shall at last unveil.” - John Ruskin |
Saturday, April 19, 2014
update...
as it happened, admitted to hospital a week ago and know what, may hang here for a while. no worries though. my fate is not made, on that you can count. soul and body are merely adjusting to steps I took this month to end a significant chapter and start a fresh page. more soon...
Sunday, April 6, 2014
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