Monthly Archives: October 2005

Poem: simple pleasures

new seedlings breaking soil

rough of a dry towel against my skin

hot tea on a rainy day

campfire crackle to the sound of crickets

steam rising from the bath

bougainvillea blossoms on a tile roof

warm wool socks

sunflowers following the sun across the sky

dry desert winds in august

pomegranate blossoms

sweet taste of cool water

flannel pajamas

fresh garden zucchini

lower winter creek trail

andy’s skin after a shower

scent of jasmine

iridescent color of sunlight

wind chimes on a back porch

fine sheets fresh from the dryer

hot barley soup with warm  fresh bread

fine irish linen

leon dancing

small cat in a ball of sleep

quiet as night descends

memory of fireflies
__©2005 Emma Rosenthal All Rights Reserved. Permission to post or forward in entirety including the copyright.

Diary post: the happiness money buys

i have a different journey than most. It should not surprise me that few will understand and that i will, at times feel very much alone.
it does hurt though, when their inability to understand comes in the form of judgements, condemnation, accusations and cruel words.
and it oppresses when it keeps me from accessing health care or needed resources.
anyone who thinks that money doesn’t buy happiness, doesn’t understand what it means to not have money: the choices it affords, the autonomy it provides. lack of money gives too much of my power to others, the doctors, the officials who get to determine for me, the severity of my condition, the basis of my need.

Diary post: a little bit of strength

i have been experiencing pain though out my body, but my energy level is good. it is amazing what one can accomplish with a little bit of strength.

Diary blog: two good days

two days of good energy. today i was out of the house by 10:30 am. i went to the chiropractor, acupuncturist and therapist, then to whole foods to get groceries. half way through shopping, my legs got very weak and heavy. it was hard to finish shopping. i made it home and rested, watched a film, (y tu mama tambien), meditated, then cooked dinner. i don’t mind this illness except when i am so tired i can’t even sit up. too many of those days lately. there is much i have to do this week and the beginning of next. i hope i have the strength. tomorrow my son needs out patient surgery and will be home for a week. i have a massage scheduled for tomorrow afternoon, and lupe’s hours have been increased to help us get through this. up until now, lupe’s hours have been paid for by an agency working with my son. but those funds run out by the middle of december i have to find a way to keep her on. the acupuncture and massage are not covered by my health insurance, but are covered by the car accident. even after the effects of the accident have healed, i’ll still need these modalities. by then I hope to be strong enough to work part time. i hope to find work i can do without compounding this illness, work that this illness won’t interrupt.

Diary post:working

Today was a good day. I started out in a lot of pain but it dissipated quickly. I was able to cook three healthy meals, and I could sit up in bed and get to my paperwork, bills mostly, some human rights work, the upcoming UTLA Human Rights Committee Conference and my own web page. Leon worked on the yard and Andy spread out papers in the living room and worked on his projects. I was able to get away for a massage in the afternoon. I’m still working on things.. It’s wonderful to be able to get work done.

http://home.earthlink.net/~utlahrc
http://home.earthlink.net/~emmarosenthal

Daily indignities: Circular firing squads

-a log of obstacles, impediments and injustices in the course of a life of disability.

this is my first “daily indignity” post on this blog. i have stories to write and tell, but this is fresh, and occurred yesterday. the ones from days before the blog will have to wait. most of the daily indignities will have to do with outright discrimination against the disabled. inaccessible events, unjust policies, violations of my human rights. this one comes from an activist list for those suffering from a condition known as chronic fatigue syndrome, to which i posted my introductory letter. many consider the two illnesses, fibromyalgia and cfs to be one and the same, at least in a majority of patients. at the very least, one might assume that those suffering from a disease so similar and struggling with the same obstacles would want to share a certain solidarity with others in a similar situation.

BUT NOOOOO!

yesterday i received the following email from the moderator of the group. now, understand, hardly anyone posts to this group and this was my first post. here’s my welcome message:

——– Original Message ——–
Subject: post for CFIDSME-Activist
Date: Mon, 10 Oct 2005 01:48:25 +0000
From: maryslists@______________
To: emmarosenthal@earthlink.net

Hi Emma – sorry I haven’t been on line for a bit. All new members are moderated because we had a lot of trouble with spams a while back. And I should have picked up new messages but have been busy with other things (and time is limited …)

This is mainly a list for CFS/ME (which is not fibro) – but I found it interesting you chose Frida because another friend of mine who is on a feeding tube with CFS/ME is a great fan of Frida’s, and knows the same history you mention.

If you could shorten that reference to your blog to just a few paragraphs, instead of such a long post, it would be okay to send to the list.

Mary

______________________

I responded:

——– Original Message ——–
Subject: Re: post for CFIDSME-Activist
Date: Sun, 09 Oct 2005 19:27:44 -0700
From: Emma Rosenthal
Reply-To: emmarosenthal@earthlink.net
Organization: earthlink
To: maryslists@________________

if the reason for moderating mail was to avoid spam, then not posting my
email does not fit that criteria and should be posted without editorial
interference. cfs and fibro are basically the same illness. cfs is
marked by fatigue, fibro, by pain. 80% of all people with either have
both. i am in that category. i fit the criteria for both illnesses.
furthermore, as orphan illnesses, cfs, fibro, and a host of other health
issues might be of interest to members of this list, as activists who
might want to build alliances and connections around points of mutual
concern. i could add “cfs” to my piece if it please you, but won’t
shorten it. that’s ridiculous. if this venue is so picky, it isn’t the
right one for me. it isn’t as if you get a lot of posts!!!!! since july
you’ve had only 14 posts. only one this month. you might want to
encourage participation, not discourage it. it reminds me of stupid
feminist arguments over who shaves their legs and who doesn’t, or the
old riddle:

how do feminists (in this case, cfs lists leaders) form a firing squad?

answer: in a circle.

post the article or unsubscribe me.

emma

______________________

some time later, not having received a response, i checked to see if perhaps i had been unsubscribed. i have not. but i did take the time to reread the description of the list. (it’s a yahoo list.)

and i wrote back to the list moderator:

——– Original Message ——–
Subject: Re: post for CFIDSME-Activist
Date: Mon, 10 Oct 2005
From: Emma Rosenthal
Reply-To: emmarosenthal@earthlink.net
Organization: earthlink
To: maryslists@______________

Mary,

The description of your list states:

“The CFIDSME-Activist has been created as an opportunity to discuss activism with relation to the illness known as M.E. (Myalgic Encephalomyelitis or Encephalopathy); CFS (Chronic Fatigue Syndrome), CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome), or most recently for those who test positive for the RNaseL defect, R.E.D.D. (RNaseL Enzyme Dysfunction Disease), as well as the allied illness Fibromyalgia… (emphasis mine)”

so where exactly did i go wrong and how is your censorship of my post conducive to dialogue between activists? my letter and my blog, specifically address the relation of activism to these illnesses. the responses i got from those who were allowed access to it, on other lists, was very powerful. i seem to be speaking to something people want to hear.

on the other hand. i have no interest in participating in a forum where one person decides for the group without their input, what is and is not, beyond protecting the list from spam, appropriate activism and analysis.

as i stated in my previous communication, post my letter, or unsubscribe me.

emma

Diary post: baby steps

today was a day of baby steps. it is hard for me to measure my worth or my progress at these rates. i had a modest yoga practice, essential stretches, scheduled massages for next week made it to the bank to deposit checks that i had been carrying for several days now, bought sports cream because greta thought it would help with the pain, meditated, watched two movies, well, one film and one movie. rested, rested, rested. i ate well, took my vitamins and minerals, an area where i lack discipline. i had wanted to do more, wanted to go to the peace walk and then to the program at the labor center on the change of leadership in utla (united teachers los angeles). lacking the strength for that, i had hoped to get work done around home, update web pages, change internet carriers, fill out credit applications in an effort to diminish the amount of money i get charged in finance charges. two months ago i had zero debt, not including the mortgage, but THE CAR took care of that. (but that’s another blog entry.) i would have liked to finish essays and poems i’m working on and perhaps send some out for publication, I might have looked for work, or prepared to look for work, i would have liked to have felt strong enough to take on regular work, planned film events for café intifada or the we project. i would have liked to have seen some good, concretely, come out of today, but i wasn’t strong enough, not enough to sit up in bed and type beyond these meager paragraphs. i just felt sucked into the mattress, not even able to read. i am learning not to go into despair and self hatred. i am learning to wait until my strength returns. i am learning to honor what can be done in a day. If i look at it all from the outside, these are huge developments, but from inside the cage of this body I just look out with hazy vision at a world out of reach, while both the tasks that bring me joy and those that bring me stability wait until tomorrow, or the next day, or whenever I might be able to take them on.

Diary post:Everything hurts

everything hurts today. i am very tired. very little got done yesterday. something is wrong with my brakes on my car and my mechanic can’t seem to figure out what it is. i need to write a blog entry on the car alone. what a mess that’s been this year. right now the car shakes at high speeds when i put on the brakes, but not all the time. i just had the calipers replaced along with the brake pads and they turned over the rotors. but it still shakes, a lot. the whole steering wheel shakes. every day the car is in the shop is a day i can’t get to health care providers. i missed a chiropractic and acupuncture appointment yesterday, i couldn’t schedule a massage for this weekend and today i’m in a lot of pain, even though i rested most of the day yesterday. it hurts to sit up or try to get around. i had great plans for the day, but it looks like i’ll be home, waiting to be stronger. there’s no timeline for the inconvenience. when I’m sick, i just have to lie here and wait until i feel better. it could take hours. it could take months. i might try swimming or yoga, and i’ll see if i can find a massage. there’s also so much to do here, at home, so much to take care of; the management of life. i did get the garden in, in a rare burst of energy that was short lived, but sufficient. i ate well and cooked dinner all week for leon and me. i’ve been getting out more, to more events, which is what i wanted to do today, and may yet do. i want so much to tackle everything in front of me, to put tasks behind me, to work hard to solve my problems, find solutions, but hard work leads to unbearable pain and fatigue that often i just have to stop and rest for extended periods of time. and now i have to save myself, that is, i need to get strong enough, and find some work. financially, everything is falling apart around me. so many basic needs aren’t getting met. it all does get back to the car, and what it has cost me this year, but, as i said, that’s a whole entry in itself.

Diary post:Resistance of ordinary seeds

i woke up today at 10 am, in santa monica, at andy’s home. he left hours ago to go to work. i’m so tired. but there isn’t much pain, a bit of vertigo, that vague hung over feeling that comes after an exciting evening. we were able to go hear howard zinn and others reading from his latest book. andy, loves the theater and we get to go out so infrequently, between his work schedule, activism and my health, it gets harder and harder. last weekend we had planned to go to a movie after dinner, but we went to see the south central farmers (www.southcentralfarmers.com -an amazing farm, organic, bio diverse, lush, dense, in the heart of los angeles, and in threat of being torn down by a system without a heart.) there had been no parking near the garden, so i had to walk from the car. later, i wandered in the garden, which was wonderful, but left me very tired and in a lot of pain. so by the time we were done, having written most of the day, which puts a strain on my back, that lying still does not inflict, i was in too much pain and could not sit through a movie. there is a challenge to any relationship, how to find time for divergent interests and time as well for the relationship. this is not a petty task, but one so often discarded in the sacrifice for relationship. so many of us lose ourselves in what today, is called love. it’s even harder when one person is sick. so much falls on the caretaker. i know this is hard for him. It’s not that I don’t love the theater, I do. i’m just too tired much of the time, and stiff chairs, stairs, inaccessible venues, lots of walking, standing, is hard work for me. what he does to relax is, for me, a real physical challenge. so when we had the opportunity to go out last night, i did spend some time in the morning with desk work; home management, political activism, writing, electronic housekeeping, but spent the afternoon resting; watched a movie, meditating, sleeping. by 3 pm i was still very tired. by five i was stronger and ready to go out. we found a restaurant with booths in little tokyo, near the theater, booths are important. they are more comfortable for me, give me, my back. more support, allow me to sit longer, to move around more. at the theatre we saw many people we both knew. i’ve been getting out more the last few weeks, getting a bit stronger. most days are better than the one preceding, but there are some very lethargic days, very painful days, days i can’t move very well. today i’m just tired. we got to sleep very late last night and andy’s alarm went off before 6 am. i got up with him for a little while, but went back to sleep after he left for work. i woke up several hours later. there isn’t much i have to do today. i hope to plant my winter garden, health permitting. leon already prepped the soil with compost and organic fertilizer. i bought the seedlings and some seeds. we’ll have cabbages, lettuce, fennel, beets, kale. spinach, peas, beans. the peppers, we had over ten varieties this summer, are still coming in, and the roses i planted in the fall are in bloom, amazing. edible flowers include nasturtiums, pansies and roses. they make beautiful salads, as do the pomegranates. the last zucchini waits to be picked and the tomatoes are long gone. they were short and sweet. the snails have over populated, making new seedlings excellent targets for their voracious habit. otherwise there’s enough food for everyone; the people and the bugs. It’s more of a problem in winter, when the crops consist of the leaves of the plant. in summer we grow the fruit; tomatoes, zucchini, eggplant, peppers. if the bugs eat the leave, there still remains much left for the people to eat. i don’t usually plant winter gardens, but soil is plentiful, deep, loamy, and organic vegetables are prohibitively expensive. so this is a bit of a new venture for me. in some ways it should be easier, cooler weather. less watering.
the day has other requirements as well: i need to stop by the market and pick up some bread. i need to schedule appointments for my health care. i have to drive home. i should leave before traffic gets too thick. the thirty-two miles between our homes, andy’s and mine, can be so long so much of the time. the window of time to travel is so thin. what could take a half an hour, can take two, at the wrong time of day.
that’s enough for now. i look forward to finding work, finding the strength to do work, having the money to pay my bills. today i am grateful for the improved strength i have. it is all so slow, so measured. but that’s another entry. i’ll write more tomorrow

to learn more about the south central farmers run a google search and/or go to: http://www.southcentralfarmers.com

Poem: Daily resurrections

Daily resurrections

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

“I must fight with what little strength I have, for the revolution.  The only real reason worth living.”  -Frida Kahlo

seedlings
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

each
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

hope
disguised as tears
to fool the vultures