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Guilt, Shame, & Responsibility

I didn't ask to be born!

For some reason, trying to sleep in the early morning, I think of this adolescent wail. And I think, all around this world -- probably across the galaxy -- people are born into poverty and abuse, slavery and illness, hardship and brokenness -- and none of us asked for this. Of course, some philosophies and religions suggest that we did, but set that aside for the moment.

When I worked with sex offenders, their victims and their wives, the wives (especially wives of men who abused their own children) would often claim the blame for the abuse. There are, of course, some wives, mothers, girlfriends, who do know -- even condone -- their husband's crimes. But usually, not. Yes, it is possible to not know; or to suspect, but deny.

After awhile, I began to see these assertions of guilt as a rather sophisticated avoidance of responsibility. As long as a mother blames herself for her husband's behavior, she is distracted from her own. She did not abuse the child. But perhaps she did ignore the complaints of her children; refuse to hear. Perhaps she feared change; feared how things would be if the denial stopped. Feared what she would lose.

She can't change his behavior; she can only change her own -- and that means, often (usually) great upheaval for the protection of her children.

Why am I thinking of this now, and why am I posting it here, on a blog about illness?*

Emergence?

Well, here I am, up in the middle of the night, wanting to be a blogger again. It's been a tough time lately. I find myself worrying that I may not be able to continue taking care of myself; energy so scarce and erratic. I have so much -- this comforting house, this lovely garden -- my companion critters, who are fed and watered and petted, but no walks in weeks. Months, even.

It's one of those periods where I can do only one thing every few days. Even just taking a shower is exhausting. How am I to keep house, take good care of these animal friends, and write or take photos or do anything else as well?

I've lost my way.

I miss the satisfaction I used to get from this activity, from the creativity and thinking and virtual companionship it brings me. But it takes energy, too, doing this. Can I find anything useful -- hopeful -- to say?

And the long absence makes it feel overwhelming again. So many changes. TypePad has added lots of new features; there are new 'places' all over the web -- too many tools, too many 'social networks'. Things don't come naturally anymore; I've forgotten. It seems I need to begin all over, redesign, rethink. Re-Be.

I'm considering sending for Lorelle's new book, just to goose me. Reminders, inspirations. Maybe something to get me going again?

And a serious prune of the blogs I read, and the sites I've joined. There's so much, it's hard to choose. Especially when friends are scattered throughout all these places and tools and toys.

Emerging, again?

Or just overwhelmed??

Fibromyalgia Awareness Day

Non-blogging friends Joe & Charlene sent a note reminding me that today is the day to help remind others -- who are not otherwise daily reminded -- of what Fibromyalgia is.

If only we knew.

But we do know how it effects the lives of some who have it.

A few years ago this was known as International ME/CFS/Fibromyalgia Awareness Day, but an internet search today doesn't find that. Many of us have been diagnosed with both (and several other) conditions; my reading hasn't clarified for me what the difference is, except that folks with M.E./CFIDS are really tired, and folks with Fibromyalgia really hurt -- but most with either suffer both.

 

I look at that butterfly on the logo up there, and I know that we (patients) are expected to be hopeful and cheerful and spiritual and all that, but I gotta tell ya -- this illness does not feel like emerging, bright and beginning, from some cocooned metamorphosis.

Nope.

Just doesn't.

[Oh -- and I have a bunch of resources listed on the sidebar of Abide, if you'd like to have actual information about these conditions...]

 

Illness is a kind of winter...

Illness is a kind of winter. It strips the green, leaving only the bare, peeling branches of your life; but it opens the sky. The view widens. It is a new season, only that. You know it will get colder. You know ice is coming. You retreat indoors; inside.

Reading MFK Fisher, I see that I know nothing, really, of pain; and less of those who live with -- who love -- the person in pain.

I am in a between place. I feel change coming -- which, I suppose, is appropriate to the season. I sit on the deck, alone, late in the night, smoking in the snow.

I shall accept T.'s offer of a tree, cut from his property in advance of the power company saws. We will put it on the deck, and decorate it with icicle lights and the Buddhist prayer flags K. gave me for my birthday. I will welcome this solstice and whatever darkness and light it brings.

I don't know who I am. I am no-one. I am a dark vessel, waiting.

 

What Is Your Day Job?

Another blog meme, from problogger.

This one caught my eye, as I've been thinking quite a lot about my [lost] professional life. I've referred to myself as a workaholic, which is, I suppose, true -- but that minimalizes me, and my work, in a way that I don't feel is just. I was career-focused, and worked long hours, and loved my jobs. But I also, always, had a 'personal' life.

It wasn't work that stole my personal life from me; it was illness -- which stole it all. I've been thinking of ways to reclaim, and then let go, of my 'work history', and my identification with same. I've been thinking -- maybe I need to write a different kind of resume, one that's made of stories, instead of job titles. Perhaps that would help me to relinquish.

Of course, I've struggled with this, off and on, for a decade now. It's resurfaced, partly, I think, because of those silly little Moo Minicards.

For most of my adult life, I've had business cards, complete with job title and so on. The Moo cards give me an unbusiness card, and an opportunity to claim a new kind of identity.

Blogger. Poet. Snapshotter.

Is that enough?

Is that being of use?

What is Your ‘Day Job’?

Coming soon:

• Novelist! 

Currently:   

• Blogger, Poet, Snapshotter 

Previously:

• Program Director, community mental health center
• Program Director, drug & alcohol education agency
• Grant Writer for above
• Grants Reviewer for state agency
• Executive Director, treatment agency for violent offenders
• Program Director, sex offender treatment program
• Clinician, sex offender treatment programs
• Medical Social Worker, hospital psychiatric unit
• Clinical Social Worker, community mental health center
• Instructor, university social work program
• Graduate Student
• Program Director, rape crisis center
• Independent Consultant & Group Facilitator
• 'Para-faculty', state college
• Counselor, college counseling center
• Counselor, college placement office
• Executive Secretary, college student activities fund
• College Student
• Waitress
• Secretary, various private and governmental organizations
• Grocery Clerk
• Nurse Aide, hospital psychiatric unit
• Movie Theater Cashier & 'Usherette'
• High School Student
• Day Care Aide
• Babysitter

I can't find my resume, so I may have forgotten something. Probably did.

Abide

I've posted a new article at Abide: Illness Etiquette II: How to visit a sick friend. I promised this quite some time ago, and the current  Probloggers How To group writing project gave me the push I needed to finish it.

But it wore me out -- so don't look for anything here until tomorrow.

CFIDS/ME & Fibromyalgia Awareness Day

Today is International CFIDS/ME & Fibromyalgia Awareness Day. I posted about this last year, and dutifully do so again. I am unhappily aware of these conditions every day, but most people aren't -- until they or someone they love falls down with it.

Last night, Keith Olbermann made a little joke, not quoted here, but paraphrased: small-town chronic fatigue group plans Awareness Day events -- posts two posters -- planned to post more --  but they were . . . just . . . too . . . tired . . .

I watched myself prickle, even though I've made similar jokes myself (Chronic Fatigue Activism?! Isn't that an oxymoron?) I think it's one of those things you get to joke about only if you have it.

I'm aware that I don't do much to raise awareness (though I do have the Abide weblog.) This is because I really prefer to ignore it as much as possible. Better to pretend that I'm just very old, living the normal life of a frail and elderly retiree. Do I want to inflict my complaints on you? No, I do not.

What would I want you to be aware of, if you get it, if you live with or love someone who has it?

I would write about this, but I'm too tired.

Really.

Resources and information:

The National Fibromyalgia Association
The CFIDS Association of America
WebMD Fibromyalgia/CFIDS Health Center
Abide|fms & cfids -- lots of links on the sidebar
& via webfriend Joe  G,  Letter to Normals, at Fibrohugs

ADDED: a useful post here, at Bookworm, and I will add others as I come across them.

International ME/CFS/Fibromyalgia Awareness Day

May 12 is International ME/ CFS/ Fibromyalgia Awareness Day. The day was chosen to commemorate the birthday of Florence Nightingale.

Resources and information:

The National Fibromyalgia Association
The CFIDS Association of America
WebMD Fibromyalgia/CFIDS Health Center

Chronic illness has been my enemy for several years. Now I am trying to make friends with it.

The (rather prosaic) poem below was written early in my struggle:

                          Fibromyalgia

I've become the princess I disdained as a child. I'll prove my
royal blood; put twenty mattresses between me and that pea.
My bones will feel its sharp, hard curve, here, at the small
of my back. I am only sick, I am not dying, no faster

than I was before. I want to stretch my muscles across
the cool length of the blue pool. I want to walk four miles a day
in the rainforest, through the cedars, beneath the eagles and herons.
I want to laugh from the middle of my belly so hard my breasts

bounce. I want to throw Clancy's ball one hundred times in a row.
Instead, I consider the purchase of a stylish cane, one with an animal
head to hold in my aching hand. I've become cranky and rude. I eat
off paper plates, drink from plastic glasses. China and silver fade

under dust on the shelves. I want to be back where I was before.
I want to wrap my legs around another body. I want to earn hard
breathing. I want to build my own garden wall, bend to place
seeds in the black earth with my own hand. I want to wake

in the quiet morning glad for the day in front of me and the dreams
behind. I want to lie in the sun all long afternoon, hot and easy and
dazed by good fortune. I want to bicycle down the hill with Elizabeth.
How do others move through this with such grace and good manners?

My days are short as winter solstice, even in summer heat. I have no
desire left, except for sleep, solitude, a feathered bed. No, sorry, I'm
too tired, too many people at parties, too much noise in the streets.
There is no prince. There is no heaven. There is no sleep.

[These long lines look better on Oratory, here.]