Thursday, September 30, 2010


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.

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.

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 24 at 10:56pm

Tonight my home nurse came to the hospital and gave me a bed bath and a massage. There are angels on this earth; of that I am certain. Good night everyone. Thank you for all your support.

 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.

the chirping of the night

written November 2007

I sit on the cold granite
in my worn jeans
in my worn self
and I write to the chirping of the night.

Sometimes, life leaves me tired.
This afternoon, I sat on the toilet
and wept into a crumple of 2-ply
still attached to the roll.
These are the things people do
when their brains are full
or their souls feel empty.

I never know where my keys are
and I never know how to tell people
that I'm sick and I'm okay
or I'm sad and I'm ok.
Or that I'm not ok at all.

It's night now and I'm outside
my thoughts floating to the moon.
Perhaps this will give them the freedom
to find their place in things.

I listen to the chirping of the night.


written February 2, 2008

We are the rainwatchers
He and I.

I see circles circling circles.
The single file line on the rim of the roof
Suspended like icicles
Like transparent angels
Like infinite promises
Quiet and clear.

He sees them better than I do.
His eyes are softer than mine.

He sees dancing and splashy fish
Bringing glowing plankton from the bottom of the sea.
The magic of the sun
Falling to us to be lapped up
And fill us full of belief in the way things could be
Or how wonderful they already are.

It is a festival, a gala, an extravaganza
The falling of the rain
for him
for me
for us
the rainwatchers.


written January 21, 2008

Today I am a troll.
I want all the people to go away
With their talking and talking
Like thumbtacks in my brain.

A small elephant stands sideways
With his big flat feet pressed
Into the sockets of my eyes.

I was thinking to write a blog
about how much I like being Chinese
But I didn't.
I missed it.
Because I'm not going to do it today.
Trolls don't write that sort of thing.

Get off, I tell him.
He ignores me.

I love elephants
And small ones have a particular appeal
But I hate this one.
He's stubborn and mean.

Form Letter

written June 18, 2008

They sent me a form letter to send to the presidential candidates. There was a section that I was supposed to fill about about how CFS has affected my life. I write a paragraph that is supposed to show how hard it is to have CFS. My mood drops through the floor and into the ugly earth. To share how awful it is, to try to prove your suffering, makes it even more awful.

Something to remember.

A depression aches in my bones like the glaring of metal. I want to skip this feeling. It's anger and pain that is bigger than I am. There is not enough room for it in here, so it runs out of me and spreads across the floor.

I close my eyes.
I keep them open.
It doesn't make a difference.