this post is inspired by brett's postings in the "despair part ii" thread. i decided not to post in the mentioned thread because i intend to go on a tangent here and i don't want to highjack the earlier thread.
first, i'd like to suggest an alternative term for "cancer survivors," inspired by AIDS activism: "people living with cancer." the reason i prefer the latter term is that it puts the emphasis on the 'living" part rather than on the "cancer" part. this is not intended to minimize the gravity of the "diseases called cancer" (thank you, brett, for pointing out the plurality). rather, the intention is to shift the focus onto the necessities of life and the living. perhaps the biggest irony of "cancer treatment" (or the "big three") is that in its singular focus on "killing the cancer"(and healthy cells in the process) it has lost sight of what is needed to live: JOY. this blind-sightedness to such degree that in order to enjoy their life many people decide to stop treatment because in reality the "big three" treatments entail so much psychological and physical trauma.
current established treatment methods have little space for notions and practices of "care." if we look at it even superficially, it is obvious that most of the "care" is provided by patients' communities rather than the medical establishment. this is a division of labour that has put the "care of life" at the mercy of a machinery that's focused on killing. even though this is in the name of saving lives, there are many abrasive aspects to this order of things. in all the research and clinical trials focused on cancer, there is so little work being done on improving the patients' quality of life during and/or after treatment. "people living with cancer" are left pretty much entirely to their own resources in this department. it seems to me that a change of paradigms is most necessary here.
second, i completely agree with brett's assertion that the collective we here must be more than just passengers. as people living with cancer (and i'm including patients and caregivers in this grouping at this instant), we must have direct say in setting the priorities for treatment and care, beyond our individual cases. we should have meaningful input in setting directions for medical research as well as the expediture of resources. i agree that knowledge is power. i would add that power produces knowledge. if we don't have a fair share of the power, we don't have a fair share of the knowledge. that's why it often seems like we learn in spite of the medical establishment. i've learned more from these boards and from my own research than from any of the doctors i've spoken to. and that's not because i didn't have intelligent questions to ask but because they don't have satisfying answers.
on that note, this is a perfect time to end with a quote from Rilke to take us from the politics to the poetics of cancer. i sent this to my sister a few days ago as follow-up to an earlier conversation which i told you about in "a time for positive thinking." i've had this in mind for a few days to post here, but i felt timid because of its obvious ambiguity. it is this ambiguity, however, that makes it work for me because in that it celebrates ambiguity itself. i now offer it as a moment of respite from our many painful certainties and gloomy assumptions:
"Have patience with everything that remains unsolved in your heart. Try to love the questions themselves, like locked rooms and like books written in a foreign language. Do not now look for the answers. They cannot now be given to you because you could not live them. It is a question of experiencing everything. At present you need to live the question. Perhaps you will gradually, without even noticing it, find yourself experiencing the answer, some distant day."
good thoughts for healing and peace.
gita
