Monthly Archives: April 2012

letter to a friend who suggests i am sick because i want to be

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.

Sickbed ennui in the land of banana leaf hope

  1. Another twitter storify: http://storify.com/emma_rosenthal/sickbed-ennui-in-the-land-of-banana-leaf-hope
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    i wish i had more energy to do more with my life.
    Sun, Apr 01 2012 15:58:43
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    this constant fatigue provides little strength fortasks i feel give meaning, purpose and healing to this broken crying world.
    Sun, Apr 01 2012 15:58:48
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    strong winds blow in the southland of the angels. making stop motion blur on silver film.
    Sun, Apr 01 2012 15:59:56
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    i want the wind to carry me, lift me up, take me somewhere else away.
    Sun, Apr 01 2012 16:00:26
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    away from this sick bed ennui. the tedium of cellular efforts. the hard work of waiting waiting waiting for strength.
    Sun, Apr 01 2012 16:00:51
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    i want to fly on a banana leaf, to some other place, where sick gurl dreams become something more than fear and loss.
    Sun, Apr 01 2012 16:01:25
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    there is so much to do to heal this wounded crying world. i have so much shuffled away in other world plans.
    Sun, Apr 01 2012 16:02:13
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    plans, wishes dreams, stored in boxes, cabinets, bell jars and the corridors of my mind.
    Sun, Apr 01 2012 16:02:48
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    i wander empty spaces of time. days that are marked only by disappearing cups of tea
    Sun, Apr 01 2012 16:03:24
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    and the march of the shadows of banana leaves on neighbor’s walls as this corner of earth spins to and from rays of our local star.
    Sun, Apr 01 2012 16:04:14
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    hope is dangerous territory. my most feared neighborhood,
    Sun, Apr 01 2012 16:05:00
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    where ideas are washed away faster than the fleeting work of stealth artists on alley walls.
    Sun, Apr 01 2012 16:05:05
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    i am writing again, without fear or hope of publication. wordpress and storify are my hogarth press. i have a room of my own.
    Sun, Apr 01 2012 16:07:11
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    the world moves around me. i am more like the sun than earth. it only looks like time revolves around me, from my perch overlooking hills
    Sun, Apr 01 2012 16:09:02
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    i feel like it all spins without me, in this box in the center of the storm. waiting waiting waiting. unlike the sun i am nothing immobile
    Sun, Apr 01 2012 16:11:02
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    lists to do scatter like dust, pollen and bird feathers from broken winds. i want my banana leaf wings.
    Sun, Apr 01 2012 16:15:44
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    i want this wind to take me somewhere where my dreams can fly.
    Sun, Apr 01 2012 16:15:51
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    but tomorrow the walls will still be peach against a purple trim. banana leaves will flutter against the green garden walls
    Sun, Apr 01 2012 23:17:51
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    and i will still be plastered to flannel sheets. wind provides the illusion that change is sweeping thru,
    Sun, Apr 01 2012 23:18:39
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    that stagnant air makes way for new possibilities. that opportunity is there to be grasped.
    Sun, Apr 01 2012 23:20:10
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    that i could fly away on a banana leaf and not look back.
    Sun, Apr 01 2012 23:20:15

Dreaming of a hot breakfast

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    still not out of bed after several days of total bed rest. hoping to do something productive today.
    Mon, Mar 26 2012 12:20:37
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    dreaming of a hot breakfast– bagel creamcheese, w egg, maybe. and bitter green jasmine tea, but i can’t get to the kitchen.
    Mon, Mar 26 2012 12:21:13
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    i’ll make breakfast when the hunger exceeds my fatigue. until then i’ll wait in bed hungry. this is amerikkkan health care.
    Mon, Mar 26 2012 12:21:43
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    and i have health care coverage. it’s even what they call cadillac care. but it doesn’t cover in home support when i can’t get up.
    Mon, Mar 26 2012 12:22:15
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    my health care doesn’t cover much of what helps me manage my illness. it pays for lots of tests test test. but no actual care.
    Mon, Mar 26 2012 12:22:47
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    i need regular massage, chiropractic, reiki or acupuncture, but none of that is covered. what’s covered? medication– which helps some.
    Mon, Mar 26 2012 12:23:26
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    what else is covered– tests and more tests. dr.s appts. treatments that don’t help. treatments for other conditions some other people have
    Mon, Mar 26 2012 12:24:35
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    therapy is covered, because if i talk abt it enough the illness will go away and i’ll fly to the kitchen on my self actualized wings.
    Mon, Mar 26 2012 12:24:56
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    @emma_rosenthal and that just made me laugh so hard I peed a little. Omg
    Mon, Mar 26 2012 12:36:53
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    .@AureliaCotta they tell me i keep my sense of humor thru the worst trials. i try. i’ll be performing here all week!
    Mon, Mar 26 2012 12:39:51
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    not that therapy doesn’t help. but how much good can come from talking about something that can’t be changed?
    Mon, Mar 26 2012 12:25:48
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    getting hungrier. the sun is out. i saw it hitting the banana leaves. but no shadows yet, it has to pass over the house to the back yard.
    Mon, Mar 26 2012 12:26:33
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    i’m so hungry. trying to get up. really trying. this is so fucking frustrating.
    Mon, Mar 26 2012 12:42:39
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    tho now,just getting out of bed & to the kitchen is overwhelming. i just can’t command my body to do what it needs to do to make that happen
    Mon, Mar 26 2012 12:46:10
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    of course,once i get to the kitchen i’ll have to remember how to toast a bagel and make tea. sometimes i can’t think things that complicated
    Mon, Mar 26 2012 12:43:13
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    and if something is out of place, one aspect of the routine that takes additional thought, i’m lost. this is fibromyalgia brain fog
    Mon, Mar 26 2012 12:43:47
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    like if there isn’t a clean tea pot. then i go nuts. the idea of having to clean the tea pot, that can be too much sometimes.
    Mon, Mar 26 2012 12:44:25
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    i do however have the capacity to get a tweet from -40 characters down to 120. ha ha ha . go figure.
    Mon, Mar 26 2012 12:46:54
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    i’m hungry. i’m very very hungry.
    Mon, Mar 26 2012 12:47:20
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    anyone who says “we don’t realize how easy we have it in amerika” doesn’t have a clue abt what most ppl in amerika deal with.
    Mon, Mar 26 2012 12:47:50
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    .@Farese9190 @TodayHIRING no fucking way! i tweet abt how sick i am and i get spam telling me to get a fucking job?? see– amerikkka!!!!
    Mon, Mar 26 2012 12:49:04
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    .@Farese9190 @TodayHIRING i would get a job if i could. right now i can’t fucking get out of bed.
    Mon, Mar 26 2012 12:49:37
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    got damn fucking spam bot, thinks this is an appropriate rsponse to chronic illness! typical @Farese9190 @TodayHIRING
    Mon, Mar 26 2012 12:50:06
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    i really hate this level of helplessness. all i want is a fucking bagel and some hot tea.
    Mon, Mar 26 2012 12:53:03
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    okay, i got breakfast. hope i didn’ t leave the stove on. ugh. back in bed, with a tray of wonderfulness.
    Mon, Mar 26 2012 13:14:43
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    i just fell. i was in bed and i fell. no i didn’t fall OUT of bed i fell in bed. how does someone fall in bed?
    Mon, Mar 26 2012 13:25:58
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    okay, i’ve been sitting up long enough. this has been a lot of work. can’t type lying down. so, i’ll be back later. time to rest.

in the company of banana leaves: anatomy of chronic illness

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    people tweet their play by play of many experiences. chronic illness is a part of the human narrative. i tweet my life. this is it.
    Sat, Mar 24 2012 17:18:34
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    anatomy of my illness. a day in bed. a week in bed. a lifetime that feels at time wasted. ideas ideas. no vehicle to transport those ideas
    Sat, Mar 24 2012 19:07:27
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    in my former home, i kept company with a pomegranate tree. today the tree outside my window is a banana tree.
    Sat, Mar 24 2012 19:07:59
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    banana trees have long big leaves, 8 feet long at times. they dance in the breeze, cast shadows on my neighbor’s wall.
    Sat, Mar 24 2012 19:08:46
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    the younger leaves are long ad solid with one stem down the middle. the older leaves are wind torn into strips on either side of that stem
    Sat, Mar 24 2012 19:09:24
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    the banana leaf shadows flutter against the green walls of the neighboring building, but only in the afternoon.
    Sat, Mar 24 2012 19:10:08
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    the morning light doesn’t cast a shadow onto the wall. it takes a later sun to make my neighbor’s wall dance.
    Sat, Mar 24 2012 19:10:40
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    banana leaf shadows get longer later in the day. deep inside my gut i dance with these leaves and they lift me up a little bit. just a bit.
    Sat, Mar 24 2012 19:11:21
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    chronic illness is very heavy long & deep it requires much waiting. timeless except that marked by shadows of leaves on stucco walls
    Sat, Mar 24 2012 19:12:32
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    there are other quiet markers– the coming and going of other people, my cat jumps on the bed acknowledges me and the sleeps at the foot
    Sat, Mar 24 2012 19:13:37
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    otherwise, a second in time lasts for days. it is morning all day until it is too dark in my room, curtains must be drawn and lights go on.
    Sat, Mar 24 2012 19:14:33
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    i drift in and out of sleeping and wakefulness. i often confuse my dreams for what has truly happened, until i am confronted with reality
    Sat, Mar 24 2012 19:16:07
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    in all that time i never left the house, and few stopped by. what i think has happened could never have come to pass.
    Sat, Mar 24 2012 19:16:40
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    through wavy antique glass on the old windows of my home i can hear the banana leaves blowing in the wind and the birds singing.
    Sat, Mar 24 2012 19:17:31
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    i may make my way to the front porch, for a bit. and then return back to bed to rest some more.
    Sat, Mar 24 2012 19:17:59
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    when i am strong enough i sit up and tweet or chat on fb, but soon gravity becomes too heavy and i have to lie down again.
    Sat, Mar 24 2012 19:18:58
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    isolation plays tricks on me, my mind conspires with hidden demons telling me of my inherent worthlessness. in dark quiet moments i agree.
    Sat, Mar 24 2012 20:25:31
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    by end of day the wall is full of banana leaf shadows, rattling together, applauding with great fanfare, these tiny accomplishments
    Sat, Mar 24 2012 21:05:35