I saw a miracle yesterday.
It wriggled in under the door frame
before the heat of the day had settled in.
It stretched its willowy wings
perched on the foot of my bed
and looked softly into my pained eyes
A promise, it said
that despite the forever it's been
of viral warfare
in twisted, knotted nerves
and what they say about there being no cure
and all that has been taken away
The brightest of lights lie ahead.
This, I promise you.
It gave me a squeeze on the shoulder
the reassuring kind
that tells you to believe
and in a twirling trail of hearts
opened the door and left.
Friday, June 24, 2011
Saturday, June 4, 2011
In Ecuador
Waterfall spatter
across my sun shined face
riding past the craggy granite
in the wild rainforest
With heavenly wings
I am a dandelion seed
carrying precious wishes on wind
a floating feather
dancing in the spray
of cold Ecuadorian clean
Racer back tank
camel back bag
I stand to lean into the pedals
"Let's go faster!"
A memory,
my memory
of before
living under the shelter
of down and linens
Propped pillows and a laptop.
It's soot colored clouds today.
The window pane says
"Burr, it's cold."
I guess I'll stay in
maybe check the forecast.
published on voxpoetica.com 2011
across my sun shined face
riding past the craggy granite
in the wild rainforest
With heavenly wings
I am a dandelion seed
carrying precious wishes on wind
a floating feather
dancing in the spray
of cold Ecuadorian clean
Racer back tank
camel back bag
I stand to lean into the pedals
"Let's go faster!"
A memory,
my memory
of before
living under the shelter
of down and linens
Propped pillows and a laptop.
It's soot colored clouds today.
The window pane says
"Burr, it's cold."
I guess I'll stay in
maybe check the forecast.
published on voxpoetica.com 2011
Monday, May 30, 2011
Advocacy Success in San Franciso!
PRENOTE: A second small yet successful demonstration for the rights of people with ME/CFS was just held. A key goal of these mini-demos is to inspire more of the same; we hope you (those who are able) will hold a mini-demo, too. Only 1-5 people are needed to pull one off, get some press attention and make some waves. Make your own signs, or we can send you our pre-made 25-foot banner. All 3 goals of this Mini-Demo Strategy are found below.
WHO CAME: On May 25, 2011, an ME/CFS public demonstration was held in front of the U.S. Department of Health and Human Services (HHS) Region 9 headquarters, in San Francisco, California. Despite the rain, eleven people came: two people with ME/CFS, Susan Kreutzer and Andy Au; three family members (mother, mother-in-law, spouse), including the protest co-organizer, Bobbi Ausubel; and six able-bodied friends. The multicultural group included people of Asian, Latino and Caucacasin decent, gay and straight, young adult and seniors. The people with ME/CFS came in spite of all the obstacles and barriers this illness throws in their way.
SETTING UP: At 1:30 pm, the protesters positioned themselves on the busy, highly trafficked sidewalk in front of HHS Region 9, also known as the Federal Building. They unfurled a 25-foot banner that read: "Obama, Sebelius, HHS: Shame on you for abandoning 1 million sick and disabled Americans with ME/CFS and XMRV (Chronic Fatigue Syndrome and a newly discovered retrovirus). Clinical trials now!" (This banner was first used on May 10th at HHS national headquarters in Washington DC: http://cfspatientadvocate.
WHO CAME: On May 25, 2011, an ME/CFS public demonstration was held in front of the U.S. Department of Health and Human Services (HHS) Region 9 headquarters, in San Francisco, California. Despite the rain, eleven people came: two people with ME/CFS, Susan Kreutzer and Andy Au; three family members (mother, mother-in-law, spouse), including the protest co-organizer, Bobbi Ausubel; and six able-bodied friends. The multicultural group included people of Asian, Latino and Caucacasin decent, gay and straight, young adult and seniors. The people with ME/CFS came in spite of all the obstacles and barriers this illness throws in their way.
SETTING UP: At 1:30 pm, the protesters positioned themselves on the busy, highly trafficked sidewalk in front of HHS Region 9, also known as the Federal Building. They unfurled a 25-foot banner that read: "Obama, Sebelius, HHS: Shame on you for abandoning 1 million sick and disabled Americans with ME/CFS and XMRV (Chronic Fatigue Syndrome and a newly discovered retrovirus). Clinical trials now!" (This banner was first used on May 10th at HHS national headquarters in Washington DC: http://cfspatientadvocate.
SECURITY: Security came out immediately in the form of one person. He appeared to be the Head of Security for the Federal Building/HHS. Bobbi told him what they were doing and how she had been told by the city police that they could be on the sidewalk without a permit, as long as they didn't have a loudspeaker. The security officer agreed, took some of the demonstrators' literature and went back inside. It was all very relaxed.
PRESS: The protest co-organizers, Bobbi and Rivka, a mother/daughter team, had spent the days prior reaching out to the press. Success! The New York Times reporter who has covered ME/CFS in the past came "to say hi" (no article expected, but good to keep relations going) and a San Francisco Chronicle reporter and cameraperson came as well. The resulting article is found here: http://www.sfgate.com/cgibin/
ACTIONS: Standing in front of HHS with the banner for 1 hour, the protesters videotaped prepared and spontaneous statements (see resulting video), handed out flyers to passers-by and in a surprise action sang the song, "Clinical trials now!" (Also seen in this 2010 video: http://www.youtube.com/watch?
HHS MEETING: Also surprising, after the demonstration, there was a group meeting for a half hour with Eric Alborg, Regional Outreach Specialist of HHS's Region 9. His boss, who was out of the country, is Herb Schultz, the Regional Director of Region 9. In the hierarchy, Alborg is positioned directly under Schutlz. (Alborg's job main is to implement the new health care program.) Alborg had thought he'd be meeting with just one person, Bobbi, and had not known about the demo in advance. But after checking with someone (we don't know who), he agreeded to meet with the whole group, that is, the two protesters who have ME/CFS and their three family members. Alborg was open to listening and wanted to know why the protesters were there. People talked about the concerns and needs of people with ME/CFS (funding and clinical trials!). The demonstrators put the struggle regarding ME/CFS in the context of HIV/AIDS, linking the possible retrovirus connection (XMRV). This discussion made sense since HIV is historically a key issue in San Francisco, due to a large and politically active gay community. The protesters emphasized to Alborg that HHS should have an understanding of the politics of all this, due to HIV/AIDS. They also told him that the information about this demo, and the meeting with him, would not be limited to the small group he was presently gathered with, but would be rapidly disseminated all around the globe via the internet, and that ME/CFS was an issue that was not going to go away.
Alborg's suggestion to the protesters: 1) Call/lobby local institutions and legislators; 2) build coalitions with groups with other disabilities and chronic illnesses -- groups that have already-established power and influence. (Though he did not say it, one protester went away thinking HIV/AIDS and Autism groups).
Bobbi gave Alborg copies of a letter she had written with her own personal statement on top, followed by a list of basic needs/demands from our ME/CFS community. Bobbi's letters were addressed to HHS Secretary Sebelius, NIH Director Collins, NIAID Director Fauci and Schultz (Head of HHS Region 9). Alborg promised to make sure the letters were given to each.
Wednesday, May 18, 2011
This sort of thing isn't supposed to happen to angels
As I have proceeded through 17 years of having CFS, I have encountered more and more individuals who also suffer from this terrible disease. I have had conversations with people who struggle to have the will to keep going even one more day, seen videos of people who cannot roll over in bed or even speak, people who have not left their homes for decades or have had to move from one home to another year after year because of financial dilemmas that have resulted from this disabling illness. Chronic Fatigue Syndrome is among the cruelest of diseases. There are no words to capture how it takes that moment where the train goes off the tracks, crashing into the earth in flames and makes that moment every moment of your life.
All of this is terrifying to an undefinable degree, but what is most amazing to an equally undefinable degree, is that these same people are consistently the kindest, most generous, caring people I have ever encountered. I see people reach out to others they have never even met with the care and love of a parent or a partner. I see a connection and sense of community, where we are all acknowledging one another's brilliant and bright existence, outside and in spite of this illness. I don't know if CFS simply strikes the bright and the kind, or if the experience makes us so. Regardless, I wanted to share this with all of you who have CFS, and also those of you who don't and may not have the privilege of bearing witness to this community of humanitarians.
A final thought. It strikes me in my heart whenever I hear of another person with CFS that this sort of thing isn't supposed to happen to angels.
But it does.
Millions of them.
And as an angel would, these people gracefully spread their wings and continue to fly about the earth doing what angels do.
All of this is terrifying to an undefinable degree, but what is most amazing to an equally undefinable degree, is that these same people are consistently the kindest, most generous, caring people I have ever encountered. I see people reach out to others they have never even met with the care and love of a parent or a partner. I see a connection and sense of community, where we are all acknowledging one another's brilliant and bright existence, outside and in spite of this illness. I don't know if CFS simply strikes the bright and the kind, or if the experience makes us so. Regardless, I wanted to share this with all of you who have CFS, and also those of you who don't and may not have the privilege of bearing witness to this community of humanitarians.
A final thought. It strikes me in my heart whenever I hear of another person with CFS that this sort of thing isn't supposed to happen to angels.
But it does.
Millions of them.
And as an angel would, these people gracefully spread their wings and continue to fly about the earth doing what angels do.
Wednesday, May 11, 2011
HAVE YOU NO SENSE OF DECENCY?
"To the CDC and NIH scientists who’ve been doing this ludicrous research for three decades and sweeping a worldwide human catastrophe of 17 million people under the carpet, I say to you: Have you no sense of decency at long last?"
by Mindy Kitei, a science reporter who's covered ME/CFS for 20 years
To read this fiery, frighteningly true article about the gravity of the disease and the levity with which it is dealt go to: http://www.cfscentral.com/2011/05/next-manhattan-project.html
Thank you for telling it how it is, Mindy.
by Mindy Kitei, a science reporter who's covered ME/CFS for 20 years
To read this fiery, frighteningly true article about the gravity of the disease and the levity with which it is dealt go to: http://www.cfscentral.com/2011/05/next-manhattan-project.html
Thank you for telling it how it is, Mindy.
Saturday, May 7, 2011
May is ME/CFS Awareness Month!
MAY IS ME/CFS AWARENESS MONTH!
Put a ribbon on your Facebook profile picture to show your support!
http://stickers.pebly.com/group/12521/CFS-ribbon-Profile-Sticker
***Once you have placed it on your photo, YOU NEED TO GO INTO YOUR PHOTOS AND CHOOSE THE NEWLY RIBBONED PHOTO AS YOUR PROFILE PICTURE. (sorry for shouting, it's just that everyone misses that part.)
Make the invisible VISIBLE!
xo♥ amberlin
Friday, May 6, 2011
One man's deciding to come "out of the closet" with CFS
"Until now, I've told no one except a small inner-circle of family that my mysterious breakdown in health, vitality, and cognition that started the night of May 5, 2007 was not due to an exotic virus I picked up in the Congo while on assignment for National Geographic. The truth? I'm actually a textbook case of someone with CFS, a syndrome I sniffed at until it happened to me. For the sufferer CFS means a total health breakdown, like a plane that inexplicably begins tearing itself apart mid-flight. Together, all the various dysfunctions associated with it leave the patient in a state of health more debilitating than chronic obstructive pulmonary disease, heart disease, or multiple sclerosis. " - John Falk
To read the article, click here:
http://www.huffingtonpost.com/john-falk/chronic-fatigue-syndrome-_b_829651.html
To read the article, click here:
http://www.huffingtonpost.com/john-falk/chronic-fatigue-syndrome-_b_829651.html
Dr. Andreas Kogelnik’s Talk on Re-Evaluating Chronic Fatigue Syndrome and Immunology
This is an extremely thorough summary of Dr. Kogelnik’s talk “Re-Evaluating Chronic Fatigue Syndrome and Immunology” at El Camino Hospital in Mountain View on April 19, 2011.
Re-Evaluating CFS and Immunology
Re-Evaluating CFS and Immunology
An Interview with Laura Hillenbrand
Some excerpts:
What advice would you give to others out there who suffer from ME/CFS?
The most important thing I have learned in my 24 years with this disease is to listen to my body. Everyone with this disease has different boundaries, and we find out through trial and error where they are. It’s critical to know where they lie, because when ME/CFS patients overextend themselves, the result can be utterly disastrous. Several times, I have overdone it, leaving myself bedridden and desperately ill for years. Because many patients have been accused of merely being “lazy”—something I heard all the time in my first years with ME/CFS— they often push themselves too hard to prove they aren’t malingering. I did this myself, and paid dearly for it. So my advice is to always put your body first, listen to what it is telling you and respect those signals.
The most important thing I have learned in my 24 years with this disease is to listen to my body. Everyone with this disease has different boundaries, and we find out through trial and error where they are. It’s critical to know where they lie, because when ME/CFS patients overextend themselves, the result can be utterly disastrous. Several times, I have overdone it, leaving myself bedridden and desperately ill for years. Because many patients have been accused of merely being “lazy”—something I heard all the time in my first years with ME/CFS— they often push themselves too hard to prove they aren’t malingering. I did this myself, and paid dearly for it. So my advice is to always put your body first, listen to what it is telling you and respect those signals.
ME/CFS?
I’ve been doing yoga for about a decade now, and it has been a godsend to me. Even when I’m quite ill, there are a few poses I can still do, and it’s wonderful for my body, keeping it flexible and maintaining muscle tone. It’s even better for the mind. Yoga relaxes me, alleviates stress, and quiets my thoughts. There is a beautiful and nourishing mindset that attends yoga, focusing on acceptance of yourself and your situation, living in the moment, awareness of the interconnectedness of all things, and cultivating gratitude for your blessings. There is so much loss, so much anguish, and so much stress involved in being as ill as I am; yoga helps me cope with it and love my life and all I have been given.
Along with yoga, I practice meditation. No matter how sick I am, I can always meditate, and it always refreshes me and fills me with optimism. In spite of what the disease does to me, I’m a very happy person, and I credit meditation for much of that. In my sickest years, I sometimes meditated three times a day.
I am also careful about the chemicals that go into my body. I try to buy products that are natural. I buy products from companies like Loving Naturals, which sells products that are organic, simple, natural and absolutely safe. I try to do this especially with products I use every day, like moisturizers and lip balms. Also, we only use nontoxic, natural products in our home, because we don’t want to breathe in harsh chemicals, and we don’t want to pollute the environment.
Thursday, April 7, 2011
What We Give Up
I tried to reach you tonight
but you are probably already curled up with a book
or doing some other winding down from the day activity.
I heard this song today and was taken back to you
the sadness seeped out from my heart
which had been carefully locked with a promise
that this would be best
best for my ever so fragile health
which could not bare to acknowledge the grief and loss
of so many dreams.
The tears came
leaving salty trails
down my cheeks.
but you are probably already curled up with a book
or doing some other winding down from the day activity.
I heard this song today and was taken back to you
the sadness seeped out from my heart
which had been carefully locked with a promise
that this would be best
best for my ever so fragile health
which could not bare to acknowledge the grief and loss
of so many dreams.
The tears came
leaving salty trails
down my cheeks.
Wednesday, March 23, 2011
I Should have died on Sunday
The poison wasn't strong enough
or the air was too fresh
but i should have died on sunday.
and now
i take the gossamer threads of my life
made of the laughing sea
and the reflection of scarlet lady bug wings
in the eyes of those who still believe in magic
and i wrap them
carefully
slowly
it hurts
i burn
it aches
gently
i wrap them about me
weaving
weaving
in a cocoon
a shell
so tightly woven
that only the light can seep through.
i will wait here.
for the pain to stop throbbing
for my heart to start beating
for my soul to start breathing
you cannot catch me
in your black, tarred depression
i will merely
slip out of my ballet shoes
let you devour them
and return to my cocoon
until
i have returned to myself.
or the air was too fresh
but i should have died on sunday.
and now
i take the gossamer threads of my life
made of the laughing sea
and the reflection of scarlet lady bug wings
in the eyes of those who still believe in magic
and i wrap them
carefully
slowly
it hurts
i burn
it aches
gently
i wrap them about me
weaving
weaving
in a cocoon
a shell
so tightly woven
that only the light can seep through.
i will wait here.
for the pain to stop throbbing
for my heart to start beating
for my soul to start breathing
you cannot catch me
in your black, tarred depression
i will merely
slip out of my ballet shoes
let you devour them
and return to my cocoon
until
i have returned to myself.
Monday, February 21, 2011
A Blessing for a Friend on the Arrival of Illness
by John O'Donohue
Now is the time of dark invitation
Beyond a frontier that you did not expect;
Abruptly, your old life seems distant.
You barely noticed how each day opened
A path through fields never questioned,
Yet expected deep down to hold treasure.
Now your time on earth becomes full of threat;
Before your eyes your future shrinks.
You lived absorbed in the day to day,
So continuous with everything around you,
That you could forget you were separate;
Now this dark companion has come between you,
Distances have opened in your eyes,
You feel that against your will
A stranger has married your heart.
Nothing before has made you
Feel so isolated and lost.
When the reverberations of shock subside in you,
May grace come to restore you to balance.
May it shape a new space in your heart
To embrace this illness as a teacher
Who has come to open your life to new worlds.
May you find in yourself
A courageous hospitality
Towards what is difficult,
Painful and unknown.
May you use this illness
As a lantern to illuminate
The new qualities that will emerge in you.
May the fragile harvesting of this slow light
Help you to release whatever has become false in you.
May you trust this light to clear a path
Through all the fog of old unease and anxiety
Until you feel arising within you a tranquility
Profound enough to call the storm to stillness.
May you find the wisdom to listen to your illness:
Ask it why it came? Why it chose your friendship?
Where it wants to take you? What it wants you to know?
What quality of space it wants to create in you?
What you need to learn to become more fully yourself
That your presence may shine in the world.
May you keep faith with your body,
Learning to see it as a holy sanctuary
Which can bring this night-wound gradually
Towards the healing and freedom of dawn.
May you be granted the courage and vision
To work through passivity and self-pity,
To see the beauty you can harvest
From the riches of this dark invitation.
May you learn to receive it graciously,
And promise to learn swiftly
That it may leave you newborn,
Willing to dedicate your time to birth.
Now is the time of dark invitation
Beyond a frontier that you did not expect;
Abruptly, your old life seems distant.
You barely noticed how each day opened
A path through fields never questioned,
Yet expected deep down to hold treasure.
Now your time on earth becomes full of threat;
Before your eyes your future shrinks.
You lived absorbed in the day to day,
So continuous with everything around you,
That you could forget you were separate;
Now this dark companion has come between you,
Distances have opened in your eyes,
You feel that against your will
A stranger has married your heart.
Nothing before has made you
Feel so isolated and lost.
When the reverberations of shock subside in you,
May grace come to restore you to balance.
May it shape a new space in your heart
To embrace this illness as a teacher
Who has come to open your life to new worlds.
May you find in yourself
A courageous hospitality
Towards what is difficult,
Painful and unknown.
May you use this illness
As a lantern to illuminate
The new qualities that will emerge in you.
May the fragile harvesting of this slow light
Help you to release whatever has become false in you.
May you trust this light to clear a path
Through all the fog of old unease and anxiety
Until you feel arising within you a tranquility
Profound enough to call the storm to stillness.
May you find the wisdom to listen to your illness:
Ask it why it came? Why it chose your friendship?
Where it wants to take you? What it wants you to know?
What quality of space it wants to create in you?
What you need to learn to become more fully yourself
That your presence may shine in the world.
May you keep faith with your body,
Learning to see it as a holy sanctuary
Which can bring this night-wound gradually
Towards the healing and freedom of dawn.
May you be granted the courage and vision
To work through passivity and self-pity,
To see the beauty you can harvest
From the riches of this dark invitation.
May you learn to receive it graciously,
And promise to learn swiftly
That it may leave you newborn,
Willing to dedicate your time to birth.
Sunday, February 13, 2011
I've been asked to write a paragraph about living with CFS.
My life with CFS was kicked off with a harrowing 3 months of pneumonia. I tried to pretend it wasn't happening by continuing pre-med classes, and dance, only to find myself in bed and in bone cracking pain at every minute I wasn't in lab or rehearsal. Slowly, piece by piece I watched the things that made my life mine fall away. Instead, it became doctors that didn't believe me, living back at home and wishing my parents a good time when they went out dancing at age 22. I broke down in anger and tears weekly, trying to cry out the unfairness. That was 16 years ago. CFS and I have a different relationship now. I realize it has sent my life down a very unusual path, one with unrelentless suffering, but also one that gives a person a lot of time to think and watch how people live. This horrific disease has given me the opportunity to really put together how and who I want to be, and that, oddly enough, has been precious.
Thursday, February 10, 2011
What do you do when you are too sick to do anything.
I have had CFS for 16 years and more than anything, I think it is a challenge of endurance. I have taken up full time employment in being happy. I ask myself throughout the day, what will make me feel even a wee bit better? and that's what I do. I have a million hobbies that come and go. It's different for everyone, what brings you joy, but I do feel it is essential. It takes the spirit of a warrior to carry on under such circumstances.
a bit of writing.
a work in progress of course...
I am in fierce pursuit of joy.
I write.
I paint.
I play guitar
and then I don't for months and months.
Sometimes it just looks too heavy over there
propping itself up against the wall.
I share my story
I believe that purpose can be made of all of this suffering.
I photograph my chickens as each finds her way to bed at sunset.
They make me laugh.
They know how important it is
to remember that life is not so serious.
Somedays, it's still hard.
Of course it is.
Other days, I plant a fresh crop of arugula
curl up in a sleeping bag
on the backyard bench
and see the water colored sky
over the puddles on the nasturtium
and know that rarely have I been better.
a bit of writing.
a work in progress of course...
I am in fierce pursuit of joy.
I write.
I paint.
I play guitar
and then I don't for months and months.
Sometimes it just looks too heavy over there
propping itself up against the wall.
I share my story
I believe that purpose can be made of all of this suffering.
I photograph my chickens as each finds her way to bed at sunset.
They make me laugh.
They know how important it is
to remember that life is not so serious.
Somedays, it's still hard.
Of course it is.
Other days, I plant a fresh crop of arugula
curl up in a sleeping bag
on the backyard bench
and see the water colored sky
over the puddles on the nasturtium
and know that rarely have I been better.
Monday, December 6, 2010
Cover Story in this week's Mountain View Voice
December 2, 2010
'Some days are worse than others, and today isn't the worst, but it is far from a good day. Since she first began noticing symptoms, she has had periods -- which can last for months -- when she has felt right as rain. Of late, however, she hasn't left the house, or her bed, much at all.
"I don't have any plans," she says in exasperation. "Everything I've ever planned in my life got cancelled."'
To read the article, click here:
Sick and Tired of Being Sick and Tired by Nick Veronin
'Some days are worse than others, and today isn't the worst, but it is far from a good day. Since she first began noticing symptoms, she has had periods -- which can last for months -- when she has felt right as rain. Of late, however, she hasn't left the house, or her bed, much at all.
"I don't have any plans," she says in exasperation. "Everything I've ever planned in my life got cancelled."'
To read the article, click here:
Sick and Tired of Being Sick and Tired by Nick Veronin
Monday, November 29, 2010
Laura Hillebrand, author of Seabiscuit, sufferer of CFS speaks out.
"'You have Chronic Fatigue Syndrome,' he said. He explained that it was one of the most frustrating illnesses he had encountered in his practice; presented with severely incapacitated patients, he could do very little to help them. He suspected that it was viral in origin, although he believed that the Epstein-Barr virus was not involved; early lab tests had liked the virus to Chronic Fatigue Syndrome, but subsequent research had demonstrated that some patients had had no exposure to the virus. He could offer no treatment. Eventually, he said, some patients recovered on their own.
'Some don't?'
'Some don't.'
That night, for the first time since March, I didn't dream of being an athlete. I dreamed of being ill. In my dreams, I was never healthy again."
- from A Sudden Illness - How My Life Changed, by Laura Hillenbrand
www.cfids-cab.org
'Some don't?'
'Some don't.'
That night, for the first time since March, I didn't dream of being an athlete. I dreamed of being ill. In my dreams, I was never healthy again."
- from A Sudden Illness - How My Life Changed, by Laura Hillenbrand
Sunday, November 28, 2010
Newsweek addresses legitimacy of CFS
For years, chronic-fatigue syndrome has been dismissed by the medical establishment. Now researchers may be closing in on a culprit.
http://www.newsweek.com/2010/11/28/could-a-virus-cause-chronic-fatigue-syndrome.html#
Friday, November 5, 2010
I am trying to remember
I am trying to remember
what life was like before CFS.
how it was to
do things
watch things
climb things
without worry or concern.
I'm trying to remember what it was like
never to have to construct a plan B and an emergency kit
for every outing
to say "Yes, I'd love to!" to any invitation
to dance to pounding loud music
or float across the floor in a ballgown
to hike up mountains
and feel the strain and glorious pain in my legs
rewarded by magical, far reaching views
to swim in the cool of the ocean
and feel the water wash through me.
to be in crowds of people and hear the hush
before something wonderful is about to happen
to be in a swarm of people and language that is different
dizzy from the richness of a life and enthusiasm
painted by a different palette of colors.
I think it's freedom that I remember.
And what will I remember from now?
I hope to remember the freedom to live by my own clock,
exempt from the frenzy of silicon valley speed.
I hope to remember a life brimming
of art, animals and love.
A connecting of people with hearts
passionate about a common goal
the healing of me,
the healing of all of us.
Of squeezing the life out of each day
even if it's watching the sky stroll by my bedroom window
A living of paying close attention to myself, to others
and making decisions mindfully and in my own time.
That however hard they spin you, tornadoes pass
and love will find you wherever you may be tucked away.
I hope I will remember.
what life was like before CFS.
how it was to
do things
watch things
climb things
without worry or concern.
I'm trying to remember what it was like
never to have to construct a plan B and an emergency kit
for every outing
to say "Yes, I'd love to!" to any invitation
to dance to pounding loud music
or float across the floor in a ballgown
to hike up mountains
and feel the strain and glorious pain in my legs
rewarded by magical, far reaching views
to swim in the cool of the ocean
and feel the water wash through me.
to be in crowds of people and hear the hush
before something wonderful is about to happen
to be in a swarm of people and language that is different
dizzy from the richness of a life and enthusiasm
painted by a different palette of colors.
I think it's freedom that I remember.
And what will I remember from now?
I hope to remember the freedom to live by my own clock,
exempt from the frenzy of silicon valley speed.
I hope to remember a life brimming
of art, animals and love.
A connecting of people with hearts
passionate about a common goal
the healing of me,
the healing of all of us.
Of squeezing the life out of each day
even if it's watching the sky stroll by my bedroom window
A living of paying close attention to myself, to others
and making decisions mindfully and in my own time.
That however hard they spin you, tornadoes pass
and love will find you wherever you may be tucked away.
I hope I will remember.
Monday, October 18, 2010
just weather
i am the sky.
and the feelings
the huge feelings
that rattle in my heart
and shake the very roots from which i grow
mere thunderstorms passing through.
how easily we are fooled into believing
thoughts carelessly grafittied on the walls of our minds.
how carefully we must remember to remember.
and the feelings
the huge feelings
that rattle in my heart
and shake the very roots from which i grow
mere thunderstorms passing through.
how easily we are fooled into believing
thoughts carelessly grafittied on the walls of our minds.
how carefully we must remember to remember.
Monday, October 4, 2010
What Were You Taught in Med School about CFS?
A dear friend just wrote me that she has been reading all of my facebook posts. She said that they really helped her understand more about the disease and made her a better doctor. She said she was disgusted with what she was taught in med school. So I asked, her,
"What were you taught?"
"You're not going to like it," she started out.
"We were (and I bet most med students still are) taught that people with CFS, fibro, vuvlodynia, interstitial cystitis, etc - are basically crazy people with a psych problem and some physical components."
(Chicago Medical School, circa 2005)
It all starts to make sense.
"What were you taught?"
"You're not going to like it," she started out.
"We were (and I bet most med students still are) taught that people with CFS, fibro, vuvlodynia, interstitial cystitis, etc - are basically crazy people with a psych problem and some physical components."
(Chicago Medical School, circa 2005)
It all starts to make sense.
Friday, October 1, 2010
The most recent shockingly unsurprising, appalling visit to the emergency room
written on September 19, 2010 at 12:48pm
I'm weakened from the most recent episode at the ER where they treated me like crap as soon as they heard that I have CFS. They shot me up with all kinds of pain meds for my brain shattering 30+ hour migraine and bone cracking body pain. None of them worked, but only made me super drugged out and then they literally threw me out in less than ten minutes after giving me the last shot.
The ER doc told me that my health problems were not viral (Does anyone in the medical field read the science section of the frikkin news???!? CHRIST!) and needed to be "dealt with at home." Infuriating.
So my hope is I tell all of you about this and you tell everyone you know and maybe it leaks out to doctors so they treat all of these very sick and suffering people with some dignity.
Private pain -> public purpose.
Thanks.
The ER doc told me that my health problems were not viral (Does anyone in the medical field read the science section of the frikkin news???!? CHRIST!) and needed to be "dealt with at home." Infuriating.
So my hope is I tell all of you about this and you tell everyone you know and maybe it leaks out to doctors so they treat all of these very sick and suffering people with some dignity.
Private pain -> public purpose.
Thanks.
comet
written on June 22, 2008
it's sunday evening. i sit by the open window and i write. i write to drain my head of it's thoughts. to take cascade or what's the scrubby stuff in the green can called? to the insides of my pipes and my roots and my soul and cleanse. it's a cleanser i need. one that comes out in mini scrub brushes with blinky eyes and bristles that get up and in between. cleansers that go over the ugly and the painful and the filth and leave a trail of clean and pure.
i know i'm under here somewhere.
i know i'm under here somewhere.
Thursday, September 30, 2010
Ugly
Sunday, October 5, 2008
I don't know if I've ever felt I needed to write as much as I do right now. I've been feeling that way for days. It's not words in me, but thoughts and feelings crashing against one another like the wrestling of waves. There's been this feeling, or a hope at least, that there would be a quieting in the laying of words, the stringing of letter and punctuation.
I don't know. I am lost and have been for a while.
I saw a movie recently in which he said, "If you do this you will be lost forever," I guess implying that if we do bad things we lose ourselves. I think sometimes it has become hard for me to know the difference between being the doer and the receiver of bad things. After a while, the feeling is the same. Lost. You don't remember where your heart lives and your organs are buoyed up somewhere around your shoulders because the rest of you is filled with grief and fear and black and ugly, shame and hate. Rage. Whichever it is, it's too much. Too much to stay and so you vacate premises. You disappear on yourself. You kick and scream at the world around you or you don't talk to it at all. You stop calling and checking and answering. You hate everything and there is no sunshine in your eyes.
Shhh. The writing is too fast and the feelings are pushing my fingers around on the keys. You have to quiet yourself enough to believe that there is peace.
I can't. I feel like I could write myself into a hurricane. A tidal wave. A fear so tremendous that my feelings would fill all of me with blackness and and come crashing out of my eyes, a cascade of black ink that trails across the floor and pools ugly stain into the carpet. I have never been so afraid so much of the time in my life.
There are moments when I come back. Glimpses of me. Class. Sitting in the yard with my dog. Talking to some guy on the street about his chihuahua. I can still sometimes hear the ringing of my wind chime reminding me,"It will be ok." I don't necessarily believe it, but I can't argue with something as sacred as wind.
How much sense does that make.
Peace and compassion to all living beings.
I guess I'll try writing again tomorrow.
I don't know if I've ever felt I needed to write as much as I do right now. I've been feeling that way for days. It's not words in me, but thoughts and feelings crashing against one another like the wrestling of waves. There's been this feeling, or a hope at least, that there would be a quieting in the laying of words, the stringing of letter and punctuation.
I don't know. I am lost and have been for a while.
I saw a movie recently in which he said, "If you do this you will be lost forever," I guess implying that if we do bad things we lose ourselves. I think sometimes it has become hard for me to know the difference between being the doer and the receiver of bad things. After a while, the feeling is the same. Lost. You don't remember where your heart lives and your organs are buoyed up somewhere around your shoulders because the rest of you is filled with grief and fear and black and ugly, shame and hate. Rage. Whichever it is, it's too much. Too much to stay and so you vacate premises. You disappear on yourself. You kick and scream at the world around you or you don't talk to it at all. You stop calling and checking and answering. You hate everything and there is no sunshine in your eyes.
Shhh. The writing is too fast and the feelings are pushing my fingers around on the keys. You have to quiet yourself enough to believe that there is peace.
I can't. I feel like I could write myself into a hurricane. A tidal wave. A fear so tremendous that my feelings would fill all of me with blackness and and come crashing out of my eyes, a cascade of black ink that trails across the floor and pools ugly stain into the carpet. I have never been so afraid so much of the time in my life.
There are moments when I come back. Glimpses of me. Class. Sitting in the yard with my dog. Talking to some guy on the street about his chihuahua. I can still sometimes hear the ringing of my wind chime reminding me,"It will be ok." I don't necessarily believe it, but I can't argue with something as sacred as wind.
How much sense does that make.
Peace and compassion to all living beings.
I guess I'll try writing again tomorrow.
What I Learned In the Last 3 Days about Hospitals and CFS
September 25, 2010 at 10:54pm
1) If you have a serious, controversial illness and feel that your health and/or life are in danger, it is very likely that it is not in your best interest to go to the hospital.
2) If you do go to a hospital, do not be honest about your health history or mention this controversial illness.
3) If you are backed in a corner, and the truth of your illness comes out, the quality of your care will immediately plummet and every effort will be made to have you released immediately.
4) If you happen to have Chronic Fatigue Syndrome and the hospital finds out, you will more than likely get sicker and feel worse each day that you are hospitalized.
5) If you are having one of the shittiest days of your life, having strong, amazing family and friends around you is priceless.
Thank you Mom, Dad, Abby, Clayton, and Rochelle.
2) If you do go to a hospital, do not be honest about your health history or mention this controversial illness.
3) If you are backed in a corner, and the truth of your illness comes out, the quality of your care will immediately plummet and every effort will be made to have you released immediately.
4) If you happen to have Chronic Fatigue Syndrome and the hospital finds out, you will more than likely get sicker and feel worse each day that you are hospitalized.
5) If you are having one of the shittiest days of your life, having strong, amazing family and friends around you is priceless.
Thank you Mom, Dad, Abby, Clayton, and Rochelle.
CFS is a Terrible Thing; My Stay at the Hospital
September 23 at 8:54pm
I've just been admitted into El Camino Hospital. CFS is a terrible thing.
September 24 at 4:00pm
physical therapy came in today to check my mobility. she wanted me to stand and i kept telling her i couldn't. she said i needed to try anyway. i got half way up and blacked out - crumpled to the floor. ridiculous.
September 24 at 6:09pm
Hospital update: they are unable to find a solution to my unmanageable pain so the next idea is to discharge me. Wha?!?!
September 26, 2010 at 6:38pm
They have put in a new system of gatekeepers called "hospitalists." These are the 'doctors' that decide if you are sick enough to be there. Yesterday afternoon, I had been given an incredibly painful shot (for pain ironically), screamed out in a piercing cry that I've never heard come out of me before, broke out into convulsions and then fainted. Moments later, my hospitalist said to my family and friends that my vitals were fine, and I was medically sound (over my quivering body). She also said that she knew a lot more about my health than they did (she had spent about 7 minutes talking to me total, all of which was explaining that I was not sick enough to be in the hospital). This is the state of medicine now. They pulled out my IV, tossed my limp body in to a wheelchair, and sent me to the psych unit.
September 26, 2010 at 8:14pm
I fainted this morning in the psychiatric unit. The nurses panicked as they are not trained for that sort of thing on their floor. I was on a bedside commode (toilet) and hung over like a rag doll for quite a long time as no one knew how to move me. The nurses were telling me just what I had told the doc on the med floor. They were not trained nor equipped for such situations. They actually asked a friend of mine to put on a pair of gloves and help to pick me up (Can anyone say malpractice?) I was discharged from the hospital hours later.
And so, my back is wrecked as is the rest of my body. I am significantly sicker than when I went in along with the bitterness of such mistreatment from my last stop for help in dealing with my health problems. I'm at the end of the line for pain control, even my own doctor agrees with this. There is nothing else out there that I haven't tried. CFS treatments are still in prehistoric times and I am far too weak and beat down right now to endure any kind of experimental treatment.
So what can I do? Throw it in and kill myself? No, I've decided. Perhaps, this string of recent events is my opportunity to tell this horrifying story of medical neglect to a greater audience. That's where you guys come in. Lawyers, journalists, activists, connections to people who know people that will be heard, please let me know what your thoughts are on this.
If my entire adult life is to be spent like this, there is no way I'm going to let that be in vain or wasted. There is a story to be told here and change to take place. It's not my story but one of millions of people with CFS who are petrified of doctors and hospitals as they have been through all this as well.
I spoke to a CFS patient the other day. She has not left her home in nearly 30 years due to CFS. That's not ok with me and really, it shouldn't be ok with anyone.
Subscribe to:
Posts (Atom)