Category Archives: Poem

Field Tested Rules for Crrpls

Rules for crrpls: do not ever ever ever ever ever imply that DISability rights is part of the larger struggle for universal human rights, against racism, sexism, gender justice and class power.

Rules for crrpls:  Don’t impose yourself on real social justice movements, attempt to infuse DISability rights into discussions of marginalization, or insist, provide suggestions or even resources that would enhance DISability access in the larger human rights struggle.

Rules for crrpls: Keep your political activism limited to organizations that focus on DISability rights and issues of access that don’t interfere with real social justice work, even if and when those organizations exclude you either because they are run by nonDISfolx, white folx, people with social and economic capital or a professionalized staff not interested in grassroots organizing.

rules for crrpls: When people try to help you, always be grateful. Never contradict them or try to explain what you really need. This will hurt their feelings (enrage them). They’re really doing their best (trying to make themselves feel good at your expense), and it’s not like you deserve to actually have a say in your agency, body autonomy or full inclusion.

rules for crrpls: Do not get offended when people make fun of your health condition or physical or emotional characteristics. Certainly don’t interrupt their fun by pointing out the arrogance, bigotry and entitlement inherent in making fun of people’s afflictions and certainly DON’T turn the tables by making fun of them, when they give you that tired excuse “we’re just kidding, lighten up.” When they say, “anything goes” that doesn’t REALLY mean that you can make THEIR entitled asses the butt of your jokes.

Rules for crrpls:  Don’t ever assert that Disability rights has any place in the larger struggle for social justice and human rights. These people are working hard enough for social justice to have to find time and resources to include your sorry ass.

Rules for crrpls:  Appear grateful and upbeat at all times, and if you can, provide material for the inspiration of people without DISabilities.– You know: paint with your feet, walk on your hands, sing out of your ass– stuff like that. They love that shit.

Rules for crrpls:  Never appear more capable than someone without a DISability. This embarrasses them and interferes with their entitled sense of superiority. There’s nothing worse than appearing less capable than someone already labeled incapacitated.

Rules for crrpls:  Do not discuss your DISability in public. Discussion of DISability is the purview of those who do not have DISabilities, so they can appear magnanimous and generous.

rules for crrpls: Do not say “excuse me” if someone is blocking your way and is deep in conversation. Wait patiently until they are finished. Also, do not attempt to go around them, because they might bump into you and this would startle them.

Rules for crrpls: Don’t ask if an event that is open to the public or that you’ve been invited to, is ACTUALLY accessible. this is rude, as it puts the host on the spot and risks causing them embarrassment.

Rules for crrpls:  Don’t show up to an event that isn’t accessible. This too may lead to the embarrassment of the host. You should magically know with your other hyper sensitive enhanced sensory abilities, if an event is accessible or not.

Got any  more? Leave them in the comments…..


Sickbed ennui in the land of banana leaf hope

  1. Another twitter storify:
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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

  1. tShare
    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

Platitudinal Pathos

you’re such a pretty lady

too bad you’re such a bitch, he said


good girls can go to hell

being polite to bad boys


learning to sit quietly

taking no space


I choose brazen words today

more suitable for caustic occasions


than tea cups and lace

I don’t like ladies sewing circles


eating finger sandwiches

and smoking platitudes


while l sit pulling knitting needles

from between my shoulder blades


lodged neatly by dainty manicured hands

in starched white gloves

Barbara Franklin: Sister Courage 1950-2007

On Wednesday October 24, 2007, Andy Griggs, my partner, issued the following statement:

Barbara Franklin, union activist and one of last year’s recipients of the UTLA Woman of the Year Award, passed away peacefully Tuesday afternoon, with her daughter, Amelia, and a few friends at her side. Many of you may know that Barbara had been waging a valiant fight against cancer over the past 2 1/2 years….
Barbara’s 18 years in the classroom, and a few years in a teacher release working with the Career Ladder Program at Beaudry, proved her dedication to education work, and the children whose lives she touched. Her work as a chapter chair, CTA State Council Rep, UTLA House member, NEA RA delegate, WHO award recipient, Women’s Committee chair, and member of the Elections Committee, showed her dedication to justice and concern for her fellow teachers and colleagues.
She will be missed.
—-Andy Griggs

Barbara Franklin: Sister Courage

By Emma Rosenthal

On Tuesday September 23 2007, educator and human rights activist Barbara Franklin, at the age of 57, passed away after a long battle with cancer.  She died at home in the arms of her nineteen year old daughter, Amelia and the company of a few close friends.

Ours was a short friendship, slow to start.  Barbara was the former partner of my life partner, Andy Griggs, with whom she had maintained a strong and significant friendship.  As a feminist, like Barbara, I had long ago discarded the frivolous, dangerous enmity that keeps women divided. But in the past I had been hurt by women who still held onto the patriarchal paradigm of female rivalry.  So at first, while never opposing Andy’s friendship with her, I kept my distance.  Even without hesitancy, these relationships require time, which we didn’t have.   They cannot develop with the intensity of other familiars.  Care must be taken to find what subjects can be broached, where feelings are tender, where boundaries are drawn.  So many forces and social influences push against these connections.  There had been much pressure on Barbara not to be close to me.  Our bond was the product of her courage.  I was much meeker than she.  It was her phone calls, her invitations at the beginning.  She welcomed me into Andy’s life and into hers. Slowly I grew to trust her.  When her illness emerged, Barbara asked Andy to play a significant role in assisting with her care. He checked with me before taking on such a commitment.   “Let Barbara know that she’s family.”  I told him. How much more difficult her final years would have been if either of us had succumbed to traditional and petty rivalries.

Barbara had several close friends and a large circle of co-workers, fellow church members and union activists who loved her very much, were very concerned with her condition and who assisted heroically her last few years. But I don’t attempt a conventional eulogy of civic life and political connection. While we are both rather public women linked by a very public man, Barbara and I encompassed the realm of experience considered to be private and individual. “The personal is political”  “Be the change you want to see in the world.”  Our friendship, mostly over the phone and at her bedside, challenged old paradigms of human relationship and interaction. Fueled by her courage and our collective vision, we created space for beauty and transformation.

Barbara was a Christian and a feminist who knew deeply the significance of sisterhood and what it means to truly love, in all of its complexities and demands.   These were guiding forces in her life, the map of who she was, what she valued and what fueled her courage.

After she was diagnosed with cancer, she struggled with the limitations it imposed upon her, the demands it made, the challenges to her understanding of self. We live in a society of great divisions especially around illness and disability.  The sick are hidden; barriers to inclusion both physical and social are built high and wide.  So, few know the language of illness: what to say, when simply to be present, to bear witness.  Platitude and pity can be deep poisons.  We entered a strange sorority together, with its own set of secrets and pledges.

We talked about our trees, the ones outside each of our bedroom windows.  To people who are bedridden, trees are a reminder of vitality.  From our beds they keep us company.  Mine was a pomegranate; hers, a jacaranda. Time is marked in the budding and fall of each leaf, the emergence of flowers, fruit and seeds, the animals that visit, the light that passes, diffused through translucent leaves.

I witnessed her suffer the gulag that is the American health care system, (despite the “luxury” and “privilege” of insurance.)  It was very painful to watch her struggle within this system while fighting for her life, so aware that every stressor fed the cancer.  At one facility, transported at four in the afternoon but made to wait, she was denied food. Finally, at 8 pm, when she asked for dinner they had accused her of arriving after the meal had been served.  (But for Andy bringing her a meal, she would not have eaten that night.)  In another facility she witnessed horrible screams, neglect and abuse. In such a place, water and ice were precious commodities and had to be requested with care, so as not to offend those upon whom she depended. Because of these indignities, and the lack of understanding, there is much terror with illness:  great isolation in a society that feels that such matters are too expensive, a personal responsibility or (blame the victim) the result of negative thinking, hypochondria or personal choice.

Her employer, the Los Angeles Unified School District, was no better; withholding her salary and donated sick leave on technicalities that took weeks to sort out, applying stressors to a situation in which they were clearly contraindicated.  LAUSD has a horrid track record when it comes to the human rights of its employees with disabilities and illness, often forcing dedicated educators into retirement rather than providing support and accommodations.  I was relieved when she opted to retire; an inevitable decision under the circumstances, though I believe for her it was, as it is for many, a harbinger of defeat.

For someone so ill, the smallest tasks take courage: making a phone call, going out to lunch, telling someone “now isn’t a good time.” Lying in bed is tedious, solitary work.   To have to measure life in such small accomplishments; such glaring simplicities, can be daunting. I never saw her fall into bitterness or resentment for what was being taken from her.  Though we did visit despair together and we were both overwhelmed with the reactions our respective illnesses evoked: many of the same people who have resented my disability, pitied her.  Two sides of the same coin: the expectations of behavior, the obligation of the one afflicted to make the rest of society comfortable, the insistence of others that they know what is best –without consideration or consultation– the loneliness that comes when one is reduced to one’s experience without the opportunity to define it for oneself.  Always compassionate; on her deathbed, racked with pain and gasping for breath, she said she thought it had been worse for me. Under the circumstances, her empathy was exceedingly generous. But such comparisons are useless. Hierarchies of suffering only serve to divide. It is what we share that binds us.

A few weeks before she died she told me “I’m alive today, that’s what matters.” And while I do believe that in her final hours she came to make peace with death’s impending inevitability, if she could have stayed with us, she would have, regardless of the terms. On one visit, only days before Barbara died, Melissa, one of her closest friends, offered to bring food from a local deli.  At every suggestion:  macaroni and cheese, Asian chicken salad, mixed sliced fruit, gelato, green bean soup, Barbara became more animated with the anticipation of simple sensory pleasure.

She didn’t want to leave us.  She was waiting for her miracle, and like so many, blamed herself when it did not materialize, that perhaps she had not being positive enough. There is a huge burden placed on people who are ill, to will themselves to wellness. And while this may be possible for some, it is an unfair, cruel expectation for most; a spiritual tyranny, an enforced façade. One cannot be positive about harsh realities and still be honest.

In many cases, it is not the soul that leaves the body but the body that leaves the soul. A strong six-foot tall woman, she couldn’t have weighed more than 80 pounds when she died. The cancer had metastasized to many of her organs.  She was in constant, systemic pain.

Barbara had a softness, often concealing her deeper qualities.  While to many she was “sweet Barbara” to those of us who loved her, this accolade negated her depth, vision and power. It was her courage and wisdom that allowed for our friendship. “I’m so grateful that Andy connected us,” she said to me, one of the last times we spoke, the week she died.

We try to comfort ourselves in platitudes —  “it was her time. “ – “She was ready to go.”  But the truth is that she held on to life fiercely, and we have lost her.  Barbara was love and work and art and passion. And she’s gone.

We meet so few people in our lives with whom we can share our journeys.  I admire so profoundly, her integrity, her hope, her ability to love.  I wish we had had more time.  I will miss her very, very much.

Daily  resurrections

…that your passion may live through its own daily resurrection, and like the phoenix rise above its own ashes. ~Khalil Gibran

take hold to delicate earth
words carve images on empty sheets of verse
the house holds musty
the smell of baking bread
there are three new
poems in the world today
that weren’t here before

I wish
I had more strength
the sap sucked from my limbs
by birds of prey
I lie here before the next attack
and prepare my quiet insurrection

breath I take is manifesto
against the huge machine
we have yet to dismantle

I wait
for when we can plan the uprising
the birds picking at my heart
taste the bitterness of my tenacity
if you looked into my eyes
you would see clarity

disguised as tears
to fool the vultures

Poem: The Dance Bipolar

the dance bipolar
By Emma Rosenthal
(dedicated to one i love so much i cannot bear it.)
he’s not sick_he’s an artist_don’t call it an illness_call it a transformation_she tells me
if it were any other disease_cancer  ms  tay-sachs_yes it would call forth a transformation_but it would also be a disease_and we could name it_we could speak of it in polite society_without fear of stigma_there would be fundraisers_and society banquets
he isn’t sick he is an artist_don’t call it an illness_call it a transformation
i contemplate the difference_between matisse and van gogh
hands withered from arthritis_matisse picks up children’s scissors_the only implement his swollen joints could maneuver_and cuts_paper cut magnificent_new blue green splashes of color_cut paper_innovative_majestic splashes of color_paper cuts that sing a zzzjazz symphony_dance tap swing hips paper cuts_swaying in concert halls_accompanying the masters_zzzjazz symphony
van gogh_tortured racked and ravaged with the savage mind_chemicals imbalanced _his mind a soup of bitter thoughts _swirling images_pictures dancing on naked walls_stars spinning out of orbit hurtling to earth_irises a kaleidoscope of color_he is a beethoven symphony_or modern cacophony_turbulent disturbed
his final painting avant guard_pure  performance art
he walks into a field after the harvest_golden stalks sway naked in the wind_desolate and lifeless
one shot to the head_splaying blood on the golden canvas_brilliant composition_innovative use of color_contrast to the naked steel gun_the color of midnight_the acrid smell of gunpowder
the french countryside the sounds of birds_the desolate fields after harvest_the grazing goats in the next meadow_the sky vast and promising_the blood the gun the violence _unimaginable one second before _two minutes after_the final scene_brilliantly  juxtaposed
early surrealism_pre post modern decadence_performance art
he is an artist_he isn’t sick_don’t call it an illness_call it a transformation