Tequila
textile design, 1988, herringbone silk
_____________________________________
I spent last Sunday with a charming man.
We had never spent an afternoon together so there was some trepidation on both our parts, I’d guess.
Me, because I wanted to somehow take the charge out of the ‘disability- thing’ and smooth out the rough edges a bit so we could concentrate on beginning to ‘learn’ one another.
He, because being a gentleman, he wanted to make sure I was ok and comfortable and safe.
Before we even went out he said: “You have to teach me how to be with you.”
I LOVED that forthrightness and clarity.
It gave me an invitation to match him there..
Meaning that I felt much less awkward in orchestrating my needs.
I know that a huge stumbling block in relationship to one with disability is whether the person feels patronized by offers of assistance.
If I help you , will you feel even MORE vulnerable? kind of thing.
People are generally kind of heart in my experience and just need a wee bit of a ‘go ahead’ from me to step into the hero’s role.
I give the green light by smiling. Or meeting their eyes with warmth. Or asking for help so they don’t even have to go to that weird place of wondering.
Sometimes, in new situations like on our date, I get in a muddle.
We had gone for a gorgeous drive through winter-esque New Mexico with her inky blue sky and blonde grasses and rust,purple,red edges of creeks easing through pastureland.
He took me to meet some of his good friends whom I really liked.
We sat around a big round table piled with books of art and poetry.
And we drank tequila.
Just a little bit.
On the way out, I had to negotiate three flagstone steps without a railing to steady me.
My date wanted to help and I found that I have been negotiating the world solo for so damn long that I didn’t even know where to grab or what to do to steady myself.
He says: “You aren’t using me..” as we both laughed nervously as I stumbled and lost all equilibrium but somehow steadied myself in the end.
Fact was: I DID NOT KNOW HOW TO TAKE ADVANTAGE OF HIM!
I passed it off as the tequila.
But really… it has to do with too long spent reaching INSIDE myself for strength instead of taking the chance to hone the trust it takes to reach for another with the expectation they’ll be there.
Fact is: sometimes they’ll be there,
And sometimes not.
But what a sorry life it would be to withdraw the reach altogether.
Addendum #2
textile design, 1988, silk
________________________
A good friend gave me a welcome nudge the other day.
She mentioned I really hadn’t quite addressed the Social Security Disability issue I recently wrote about as completely as I might’ve.
And I heartily agreed.
What with all the outside coaching I received to prepare for my appointment like: “Dress like a bag lady and refrain from showering..”
I really was left with more missionary zeal than I had before,
To CHANGE THE WHOLE PARADIGM OF DISABILITY ALTOGETHER.
We, as a culture, are stuck in the antiquated and fetid position of forever shuffling our lame and infirm off into some shadowy place far away from the prized human specimens with all their parts shiny and buffed.
Must I actually stoop LOWER to receive governmental assistance?
Is it actually not enough that I use a walker to gain access to places others run and jump and spin their way into?
Or that I say prayers of gratitude for my access to ambidexterity as I’ve lost the use of my right hand?
No, I WILL SHOWER,
And I WILL wear the elegant clothes that help me feel beautiful,
And I WILL wear a particular shade of red lipstick.
Because hiding my light under a bushel basket will do nothing for me
But make me sicker.
So..the whole experience of playing the game of acquiring disability assistance was and is a valuable one.
My survival depends on this financial aid, yes.
And I am not stupid enough to shove my attempts at well being under their noses to make sure they smell my Chanel #5..
Going through the process has me acutely aware that the system is so very flawed and dangerous, even.
Shrinking our psyches and souls in order to fit through the keyhole beyond which the money is placed,
Is the antithesis of health-promoting.
Which, if the powers-that-be are awake..
IS COSTLY!!!!!!!
Small
detail of textile, pigment on wool flannel
________________________________________
.
.
NOTHING – a poem
.
.
The small of my back
.
Hosts a creature with tan fur.
.
I need nothing more.
.
.
.
-CA
.
.
Talking Loud
detail of painted textile
_______________________
My tone in prayer is new.
Louder.
Out loud, even.
I have spared God my true voice for eons, it seems.
And ‘it/She’ want to BE HEARD!
No more ‘mamby-pamby-make-nice’ at the altar.
Pretty flowers and incense and an ordered and lovely display meant to seduce.
No, the back of my throat is raw from sounds and tears and questions and humanness.
No more tucking myself in on the God-front.
I WILL BE HEARD.
Do I think adamance and ferocity will gain entry?
I am interested only in the bedrock of this life-thing.
A life lived cloaked in ermine rather than homespun has lost all ‘elan.
My voice on my knees is close to inhuman, sometimes.
I have gotten to that point very few times but whenever I do, the red carpet just appears and unrolls itself magically before me,
And, in that moment or whenever I reclaim enough strength, I step on.
And IT takes me.
And I am new.
And never look back.
And so very glad for the raw thing I just went through.
But only after it’s done.
And, as surely as I take breath, this deliverance can NEVER, NEVER, NEVER be concocted…
The theater of it must sneak up on me and grab me by the throat and kick me ‘hind my knees,
Until I fall..
At Your feet..
And let You carry what I cannot.
And You always do.
You always do.
You.
Halloween
“TWO”, 4.5′ x 4′, pigment on wool flannel, something like 1995
______________________________________________________________
In my book, Halloween holds no ‘elan.
It feels like a holiday for the privileged masses uninterested in or unaffected by a life lived ‘DE-masking’.
Folks take up the guise of goblins and pirates and mummies and witches.
They revel in the softening of themselves in order to slide into the skin of another.
I have spent my lifetime stitching together my very own costume.
And it truly did feel like a costume most of the while I was at work on the project.
“Fake it to make it’ as the adage goes..
The act of piecing together a solid sense of Self as a human, woman, life-participator-of-value,
When one has not had a reliable parent to back you up in the process,
Is a VERY long row to hoe.
And certainly NOT for the lazy or faint of heart.
There are horrors and mishaps and desert-dwelling years without much water.
But the result of such foraging..
IS AN AUTHENTIC SELF!
And that I have.
It is my highest achievement to date.
And I am uninterested and unwilling to pick a costume to cover this preciousness up.
She is too new and untried as yet.
But I keep feeding her with the finest of food,
Like people who can add to her song and huge dollops of Nature and an intravenous line of Spirit.
The restaurants I frequent ask that all masks and disguises be left at the door.
And so the few of us sit there with shining faces and don’t really say much of anything.
We just appreciate one another in our birthday suits.
My Friend and Foe
textile design, pigment on wool flannel
______________________________________
I love my bed. (this is not my bed in photo)
Sometimes it bores me because I know it too well.
Other times I think it is my absolute favorite and bordering- on- sublime place on the planet.
This, I know, is an unhealthy amount of attention to be paid to a piece of furniture.
I love it. I hate it.
Where is my therapist?
A symptom most people dealing with MS experience is a kind of fatigue not unlike the sudden onset of a full on stupor.
It is different than just normal exhaustion following a trip to the gym or a day digging a ditch (not that I would know..)
This core tiredness visits at inopportune times as an unwelcome guest.
I was sitting with a good friend yesterday having a charged and REALLY inspiring conversation.
Every cell of me was engaged in what we were talking about.
One moment all of me was there..
And the next moment 2/3 of me was gone or going.
I know this pattern well enough to be able to say: “OK.. I’m fading.”
And those that know and love me get it that I need to stop doing what we were doing and go home.
I am always a little bit miffed when I need to truncate my life like that.
It is then that I love my bed.
Until I don’t again.
And get up to meet life and give it a solid hand shake and move on down the road.
To see what’s next…
Hungry
detail of textile, pigment on wool flannel
_______________________________________
.
.
.
HUNGRY- a poem
.
.
My heart is tired.
.
And hungry. She needs the best food.
.
But the shelves are bare.
.
.
.
CA 2010
.
.
.
.
Witness
detail of textile, pigment on wool flannel
_________________________________________
A few days ago I was honored to sit with three women I respect and feel safe with.
Safety is the key word as I knew without a doubt they would keep a confidence and not judge me.
The woman I call my ‘teacher’ is wise beyond knowing and has shepherded me through many hills and valleys.
Her recent request that I choose two women to witness a disclosure on my part challenged me.
Who DO I feel safe enough to invite to sit with me as I say aloud something I feel deep shame about?
My task was to make public something I had kept hidden for so long that I really did think I had forgotten.
And yet.. it still had me.
Had me in a stranglehold choking off life that wanted to come in.
And my teacher knew that unless I unveiled the secret I could never be free.
And so she asked me to speak it.
And let the three other women in the room help me hold it from that day forward.
The time leading up to our congregation was charged with release for me.
I found myself afraid to speak the thing and tearful at the thought of being so exposed after 20 years of hiding.
What would it be like to tell the truth?
It doesn’t really matter what the subject of my shame was.
We all have something wrapped tight and hidden in some secret corner, it seems.
The thing is, when I finally spoke the words; sent them out into the light of day,
The weight of them was far less than my private stronghold.
After my companions witnessing my admission, the core of it was still with me.
But all the charge was gone.
Gone.
Gone.
And I was free.
I look different now.
My skin is a little more pinked.
And where all that shame was is now ready to hold something else altogether.
And I trust it will come in it’s own time.
But I won’t hurry it as this space feels awfully fine.
Very fine, indeed.
Too Tired
hand-painted textile, pigment on wool flannel
_____________________________________________
Sometimes, I start feeling so good
That I forget.
It happened yesterday as I literally soared through my day.
It was a full one, to be sure.
I got up early, wrote, meditated, rode my new exercise bike, take Olivia for a roll, take lots of supplements and make a smoothee.
Take a shower, make myself beautiful, go to meetings and appointments, deal with disability stuff, rifle through unfiled papers to find something.
Go to storage unit and pray I can find one special photo to send to high school chum putting together a memorial for a friend, get dirty, dirty, dirty, find the photo, too filthy to do anything in public so go home.
Need gas in car to go further.
Hold my head in hands as I sit in car and wonder if I have it in me to do this.
Don’t cry but want to.
Save it for later.
Open car door, get out the walker, put in the gas while leaning up against car for support, get dirtier, put walker back in car.
Energy dangerously close to gone so stop at MacDonald’s for an iced tea to re-hydrate.
Pull over to side of road to be safe and rest while drinking tea.
Let seat all the way down to rest while I reclaim myself. Dog sits on chest.
Finally feel good enough to go home.
Pull in driveway and say prayer of gratitude I made it.
Unplug phone and computer and crash.
This kind of tiredness does not happen to me too often anymore.
It used to be my constant companion for years.
So, in a way, days like yesterday are good as they help me remember what is easy to forget:
That I AM HEALTHIER to be sure.
I could NEVER have pressed through a packed day like yesterday a year ago.
But I have got to take care.
Take extra good care of the health I’ve fought for and won.
Not squander it willy-nilly in undeserving corners.
I slept and slept and slept and slept last night.
And this morning I seem to get a reprieve..
Another go at the ‘life-in-moderation-for-the-moment’ thing.
It is another opportunity to refine my precious life.
A wake up call to my own value.
I want to live.
And live well.
So.. I’ll use today to begin again.
And thank God I can.
In The Raw
textile detail, pigment on wool flannel
_____________________________________
.
.
IN THE RAW- a poem
.
.
I’m going to stand here
.
Dressed in nothing more than my
.
Unsolved heart humming.
.
.
.
-CA 2010
.
.