Tuesday, May 19, 2009


Yesterday acupuncture. Felt good right after. Plummeted since. Today immobile. Wanting to get a million things done including the post I intended to create on this blog, thanking the wonderful people who have helped. Know you're in my thoughts.

Friday, May 15, 2009

more catch 22

Kaiser couldn't provide psych services because we're on MediCal. The local community service organization that usually provides psych services to MediCal patients cannot provide psych services because we're on Kaiser. Depressed, yet?

Sausage on my nose.

The worst pain is emotional. Sure I feel sorry for myself sometimes when I think of things I used to do and can't now, but there's ten thousand times the sorrow and frustration in seeing my older kid completely bedridden.

A kid who used to love hiking and kayaking, who reveled in working hard in the garden and in solving challenging math problems, who wrote quirky complex stories packed with clever wordplay, who plans to be a lawyer and who at 15 would like to be running with a pack, dating, hanging out---on a good day, this kid is out of bed for a meal.

I would do anything to free my child from this illness. If I could, I would take twice the disease on myself, to take it off my child. I could happily enough watch and guide from bed while my kids forged ahead, tried their talents, took on their challenges, made their mistakes and created their triumphs, finding their ways in life. If someone gave me one wish, their health is all I would wish for. But I know from the old stories that given a wish I would end up with a sausage stuck to my nose. You know the folktale? He wishes for a sausage, and she says he blew it and in anger wishes the sausage were stuck to his nose. So we do what we can, short of wishes.

We've been to doctors, we've researched on our own, we've tried alternatives, and what it seems to come down to is rest. Complete, profound rest. It's hard to get, when your mind stays active while your body lies still, and your mind travels over all the things you'd like to be doing, ought to be doing, can't be doing.

Most parents can congratulate their kids on great performances on tests, in sports, in arts, can thank their kids for helping out with household chores, can praise them for so many accomplishments big and small. My child is achieving one great and terrible feat of rest, with rarely any tears to betray the cost. I mean it wholeheartedly when I say, "Don't worry about it. I know how much you'd help if you could. You're doing exactly what you should be doing, and you're doing it so well!"

I take what we have, I try to arrange for our basic needs, I try to rest as well, and I try not to wish. There are harder lives. There are mothers who mourn their children. I treasure this child's smiles and jokes and honor the heroic courage that few but me will witness, and I try not to wish for anything but the blessings we have, because it would really be a bitch to deal with all this plus have a sausage stuck to my nose.

Thursday, May 14, 2009

Sonnet 170 South

Comic relief will occasionally filter into the tulgey wood. Silliness is after all my raisin dart, and ME just my tragic flaw.

Sonnet 170 South

I knew a man who dreamed he saw Joe Hill
and all the best minds of our generation
alive as him or me. I know him still.
His dog is better. He eats Ken’L Ration.

We sang together, “We shall overcome;”
the speeches were sincere, the marches long;
until we fell exhausted and sat dumb
or sang the Oscar Meyer Wiener Song.

We went our separate ways. He wrote some verse
about the universe and what it thought
and if his poems were rot my own were worse:
on being all I can be but am not.

So gather dust, typewriter, empty sheet.
The Pepsi generation can’t be Beat.

The Current Conundrum

It makes as much sense to prescribe antidepressants for ME as to prescribe them for Parkinson's or polio. In fact, antidepressants may worsen our condition. Yet there is a mainstream medical assumption that it would be of value for us to be under psychiatric treatment and on psych meds, and we must show that we're receiving treatment to qualify for disability benefits. And if we don't receive the minimal benefits to which we would be entitled (based on my fairly low lifetime earnings) how are we to find a place to live and finance the complete rest and healthful diet we actually need if we're to hope for improvement? In pain and brain fog, I can only hope that I can work through the system, educate the doctors, struggle, juggle, and, as prescribed, avoid stress.

For more information...

"This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterization."
Laura Hillenbrand, Bestselling author of Seabiscuit

ME Society of America has excellent information, as has A Hummingbird's Guide to ME.

Who am I and What is ME?

Two separate questions, but becoming harder to distinguish.

Who am I?

I've always shied away from definitions. Even the most casual---select an icon, post a one-line status message, the tweet of a moment----bring me up short. How to define myself in this time, in this place, to this audience? How can my photo, my name or my bio convey a sense of me that has approximate truth? And of course it doesn't really matter, as we're all busy constantly defining ourselves and only briefly making reference to the definitions of others; bees touch flowers and fly on, the point never being the flower or the pollen or the honey, but the bee.

Pressed, however, I would once have defined who I am in standard ways: by what I do for a living and what I do for fun, what groups I belong to by nation and state or by gene pool, the phase of life I'm in, degrees earned, sexual preference and familial relationships. I remain a female Arab-American Californian MFA USC Film School graduate straight liberal pagan environmentalist funny homeschooling single parent in her 40's, not in any particular order.

Once I would have added, "I'm a screenwriter. I write and edit for a living, and sometimes work with the state parks. I enjoy hiking, kayaking, and struggling to identify flora and fauna. I prefer acoustic music and particularly world folk music: listen to a lot and play a little. I enjoy folk dance and am learning a few varieties. I love steampunk style and have some sewing and manufacturing projects in mind, as well as a steampunky screenplay in the works. I could be called a bit of a homebody since I enjoy gardening, cooking and baking more than going to parties. Even so, my kids and I travel whenever possible, taking road trips, visiting friends and family, camping. I can cross-country ski a little and want to learn more. I'm not a great artist but I like to mess around with pastels, sketch a little. I dream of sailing clockwise round the Mediterranean, stopping in every possible port and recording dance and music. I'm a homeowner, working to pay a mortgage and planning on assisting my kids through college with the equity."

All of that has changed.

Enter the second question: What is ME?

Myalgic Encephalomyelitis is a disabling disease. I won't go into a clinical definition. You can look that up as easily as I can, and can probably comprehend it better than me. Reading comprehension is one of the things the disease has stolen from me.

So I'll stick with what ME is to me. ME is the pain that holds me in bed for an hour or two after I wake. It's the profound exhaustion and all-over aching that strike after the slightest exercise. It's struggling to cook a meal or wash a dish, and feeling triumphant but exhausted if I can run an errand. Then, it's back to bed to rest up, hoping to ride out the pain and haul myself up onto my feel again to cook dinner.

Take the worst sinus infection you ever suffered and keep it with you forever. Or how about pneumonia plus a concussion? I've had both so I know. This is how ME feels to me.

I have better days and worse days. I make plans and cancel them. Loose ends stay handy, ready to be picked up and dropped again.

I can't dance, play music, hike, sew, earn a living or plan for my children's education, travel or dream anymore, so who am I? Am I ME?

ME is the governing part of me, now. It's the part of me that says I can't add to or revise this, that if it will ever be posted it must be posted now, and that this much writing was too much: it's time to rest, and rest, again.