your ideas aren’t new to me. i don’t talk about my illness nor am i sick in order to get attention or because this is what i actually want. i have enough talented and intelligent, that if i weren’t this sick, could get a whole lot of attention doing a whole lot of things. as it is, i could get more attention pretending my illness didn’t impact my life the way it does. i could get a whole lot of attention pretending to be positive and happy, when i’m really not. i think there is a greater truth to be told, and a cost to that truth, but i also appreciate that my ability to articulate my experience is of benefit to those who also endure what i endure, but don’t have that capacity. —they tell me this! hearing from people who are validated by my words is priceless and makes my efforts valuable, to me, and apparently to others.
i think we live in a very compassionless society that blames people for their misfortunes and loves stories about people who “made it”. it’s a lot easier than actually taking care of each other. it’s easier than compassion, and it’s a politic that supports a brutal ruling class– that the rich got where they were, because they THINK better, that healthy, beautiful people are somehow more spiritual, superior.
it’s a politic that i embraced at one point in my life, and it rejected me. it doesn’t work. at a certain point all it does is create huge areas of denial –denial of pain, denial of people from the margins.
i do make healthy choices– eat healthy foods, do yoga, meditate, take vitamins, etc. i’ve tried many expensive modalities for treatment. i’ve thought good thoughts, etc. i’m sick. it’s just the way it is. (actually there are things i can do to get better, but some of them are too expensive right now. i simply don’t have the money.) thing is, when i get sick like this, speaking the truth about my condition, and resting resting resting is what helps. i’ve had this condition for 15 years. i know what it takes to manage it.
friends who want to help can offer to do so. they can ask my partner what they can do to ease his responsibility. they can give me rides to drs offices, bring over food, help out around the house, bring groceries, help raise funds for the care i can’t afford, support my work, or even, just visit. just sit and bear witness to what i real, what the present challenge is. — the things people used to do for each other, what they still do in compassionate communities.
life isn’t changed because we think good thoughts. nice idea, but it just doesn’t work that way. i’ve know a lot of people who were really silenced and marginalized with this thinking– people who have survived cancer, but not because they thought better than the people who didn’t. i lost friends to cancer who tried to be positive, ate all the right foods, did all the right things. i think it added to their stress, when what they really needed was to say exactly how frustrated, scared, alone they felt.
we tell people they create their own condition because it excuses a whole lot of injustice and marginalization, and because it makes us comfortable. it’s not easy listening to people in pain. it’s not easy listening to people who complain. it’s a lot easier to silence that in a spirituality of complicity and obedience. it’s certainly a lot easier than actually fixing this mess the world is in, and creating a society that meets human needs.
i also am not a fan of madonna. (the friend who this is to, used her as an example of positive actualization and insight). she’s a very mean and narcissistic person who has left a lot of bodies in her wake. the way she treats people who work for her, in her own words, is hardly positive, kind or healing. she’s no one i look up to. she has masterfully marketed her extreme talent into meaningless pop drivel and sexual objectification. as for her attachment to kaballah– it’s an ancient tradition, not a passing fad. it is very complex, not something that can be simplified for mass production. cultural appropriation is never attractive.
i haven’t come to these ideas casually, nor have your suggestions failed to make their mark on my life, nor have i rejected them capriciously.
i think greater healing though is had through telling the truth, no matter how inconvenient or uncomfortable. i know i am at odds with the culture around me, but nothing changes without complaints and non-conformity. i would rather find myself a small counterculture of resistance than find ways to please and appease an intolerant and compassionless society that blames people for their conditions, instead of insisting on ways to meet human necessity and asking people what they need.
i don’t want to have this conversation more than once, because i find it very hurtful and isolating. there is something more negative than the negativity sick or otherwise marginalized people are often accused of. it is the negativity of negating the full range of human experience and existence. it is the negativity of telling people what they have to say, who they are as they are, has no place in the larger society and is their own fault, if they only thought better or adopted some magic protocol.
there is a difference between curing an illness, and healing. healing is a much deeper process that requires deep truth telling, process and transformation. it is often quite wrenching, lonely and painful. (it is why so many cultures have initiation rituals that involve pain).
(at this point in time, there are no cures for my condition, though there are ways of managing it.)
i am not interested in maintaining the world the way it is, on either a small or large scale. i am interested in the deeper transformation, the deeper healing, and we won’t get there by insisting we need to think positively. we will only get there when we can clean up the muck that keeps us apart, that separates, that exploits and that poisons us. we certainly won’t get there by telling people in difficult circumstances, that their reality exists because they want to live that way.
(anyone who really knows me, knows i have a tenacity and a spirit that is hardly complacent or stagnant.)
my illness is caused by trauma and environmental toxins. without going into the details here (storytelling doesn’t mean some things aren’t private), the trauma i endured most people don’t survive. the trauma i endured is rooted deep in the power relationships of a brutal body politic, that i am determined to fight, on every level.
i tell the truth. i don’t just lie in this bed, sick, meditating, waiting, eating well, etc. i share my journey and i express my journey as a political one, among the larger issues of the day, imperialism, health care, education, oil spills, domestic violence, genocide, racism, sexism, ableism, heterosexism, etc. and i challenge those systems that allow these negative realities to go unchallenged under a cloud of enforced positivity and false blame.