hand painted silk robes, 1987
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I think about death.

It is the great gift of chronic illness; the impetus to peek behind the velvet curtains our culture has so elegantly hung;

Obscuring the taboo, the sacred, the untidy.

I truly am not in the least ‘done’

However I let death inform my life.

Befriending death allows me to better recognize Life when I see Her.

Steve Jobs’ sister delivered his eulogy.

He lived gorgeously.

Like a rocket.

And died beautifully.

From the tidbits we have been privy to,

You’d think his ‘life-theme’ was creativity..

Surely, that was there.

But there was something else.

The fuel he ran on was other that we knew.

And so..

Befriending death

I add gold to my days

By just keeping my eyes peeled

For Life.

In Steve Jobs’

Life and Death

I found treasure.

Been busy filling out forms

With the hope of accessing some support from various places.

There is a veil of toxic smoke

Which literally circles my beloved Santa Fe

As wildfires burn willy nilly.

The general read on the consciousness

Of the population here

Is skittish and snippy and fearful.

And I am right there with them.

Until I’m not.

This girl is getting pretty darn practiced

At shifting her point-of-view

To a life-enhancing one

As needed.

It really has come down to this:

Fear, drama, shakin’-in-your-boots-mentality

Utterly bores me.

It is SO EASY to go there.

So seductive.

Like a religion, almost.

It is what we know best.

There HAS to be another way..

And I’m out to find it.

And find it again..

And again….

….

…..

I fell the other day.

It happened in a dirt parking lot which was rutted and sandy.

I was not hurt.

I slipped in the gravel next to my car as I was negotiating the narrows I had left between a railroad tie and the car in an attempt to give my dog some shade.

Needless to say, it was not a handicapped parking spot.

As I sat there in the dirt, I looked at Olivia who was sitting in the driver’s seat with a mixture of confusion, compassion, impatience and love on her face.

We chatted, my beloved dog and I as I sat there in the dirt.

“Well, Livvy… here I am sitting here and I can’t get up.”

Her eyes go half mast as they do when she feels love toward people.

I tried to turn myself over but my feet kept slipping underneath the car, not able to get a foothold in the dirt.

“Let’s try this again… hmmmm… if I hold on here and twist here, I might be able to do it..”

This went on for 15 minutes without a tear in sight.

Yes, I was swimming in humility.

Yes, I was frustrated.

Yes, I wanted to be ‘saved.’

But most of all it felt like a challenge far from the spiral of darkness it could easily have attached itself to.

What does this have to do with MOTHER?

I am the eldest of four.

I saw an old family movie recently where I was impossibly innocent and cute.

There was light there in my eyes.

I lost that at 5 years old when I got buck teeth and a new, blonde sister.

Something happened, then, that put me on a very gritty road I actually am not sorry about.

I was… believe me..

But not now.

Because I really am enjoying who I am these days and know she came forward BECAUSE OF choices I made in the midst of a challenging childhood.

My mother and I parted emotionally supportive ways early on.

Pretty much at birth.

She wasn’t ready to be stripped of the possibility of getting her own enormous needs met.

Forgive her? No.. not there as yet.

My sister got to ‘have’ her.

I have sometimes hated my sibling for the injustice of it all.

My sister became my mother’s confidant and ballast and empty space-filler-in-er.

They gathered in the kitchen whispering and judging.

A covert comment.. then the weird ‘cover’ of silent cooking or cleaning or: “Just LOOK at that crabapple tree in bloom.”

Needing a place of my own, I learned how to change myself around to charm, entertain, soothe and mollify my alcoholic FATHER.

She got mom; I got dad.

This arrangement served us well in the ability to survive a very dysfunctional family.

But my sister and I lost each other in the process.

I became a juvenile delinquent as I spun around, trying to finding a place in the world that felt free and mine.

I spent hours and days in the woods behind our toxic house, soothed by nature and the blessed non-humanness of it all.

I smoked cigarettes, pot, did drugs and skipped school.

I got a semblance of the attention I was so hungry for.

My mother and I got so far apart that when I was raped as a college student she did not show up at all.. a cursory “I’m so sorry” on the phone was the extent of support.

I asked her why? years later and she said: “I just didn’t know what to do or say.”

My sister and other siblings have created healthy and happy families, marriages and lives.

I am so proud of us all for surviving what we did without hurling our unhappiness outward toward whoever was there at the moment and creating good lives for ourselves.

I see that my sister knows how to be in relationship in ways I don’t.

Watching her in family and marriage inspires me and instructs as well.

This ability she has is the thing I envied for so long and can only happen as a transmission from ‘the mother.’

When I was struggling in the dirt of the parking lot after my fall, I was using all the skills I learned as an independent and rebellious forsaken child:

I know how to work my way through challenge by entertaining myself with a shift in point-of-view.

My movement toward Life includes the ability to NOT COLLAPSE and trust myself to know I can figure a way to achieve the thing.

I find myself and Life eternally interesting as I watch the ways in which people (and I) negotiate the shadow; society’s and their own.

I have learned to find solace and inspiration in the smallest of things.

We protect the things we love.

I grew up without that sense of safety that should have been a given.

I have had to learn to lick my wounds and choose now to enliven in each moment because it feels good.

This is an EARNED skill and truly one of my greatest achievements.

These abilities are the things I love and protect.

Here’s where duality comes in:

I know what LOVE feels like BECAUSE I also have been privy to it’s absence.

I can get over myself and love my sister,

And keep those away from my sphere who want what I have without putting in the work.

Because work it is

And truthfully, I’ve had enough.

I open myself now,

As a healthy, emotionally sturdy

LOVER OF LIFE;

Albeit a bit grimy on the backside.

I have a few embroidered coats I wear

To bridge the gap

Between the disabled world

And the other one..

These coats are power tools for me.

Each time I wear one

Without a doubt

Some person will see the coat before they see my walker and leg brace

And tell me how beautiful it is.

It IS beautiful…

But the beauty of it for me

Lies in it’s inherent bridging quality.

It helps me feel less isolated,

Less weak

And more engaged with the party…

Here are some people

Who practice the ‘MEDICINE OF ADORNMENT’

As a testament to their relationship

With ALL THAT IS.

Survival of the fittest…..

Reckoning with a disability

Allows some deep conjecture on this topic.

(At least, in my lovely, curious mind…)

What, exactly, does “FIT” mean?

Am I ‘un’FIT because I can’t do the thing the guy is doing in the photo above?

Does being fit mean walking without support?

Being able to run from a Tsunami should I need to?

Bear children?

Forage for dinner in the forest?

Grocery shop?

Plant a tulip bulb?

On NPR this morning I heard a 100 year old woman sparkle in her love of life.

The reasoning behind her longevity (109 years old…God, please spare me)

Was called ADAPTIVE COMPETENCE:

The ability to bounce back from stressful situations

By getting up and dusting one’s self off.

I recognize that capacity in myself

And because of that blessing

Consider myself quite “FIT.”

Really,

I’d rather this gift

Than running a 4 minute mile.

But I wouldn’t turn it down

If it was offered………………………………..

When my brother, the fabulous captain in the fleet of Southwest airline pilots

Comes to visit

He knows to prepare.

He has to do stuff.

He’s done it all his life;

The thing is.. he knows how to fix pretty much everything

Which really makes it impossible for him to just kick back

BECAUSE THERE ARE JUST SO MANY DARN THINGS TO FIX!

He cruised through my list in short order

And one of the items was to take a photo of my fabulous new BRUNO mechanical arm

Which lifts my wheelchair into and out of the car.

My brother-in-law wanted to see it in action.

So I stood there with the controls

And the chair attached just so.

Because it was a weird enough situation

Inviting a family member into the strange world of disability I live in

And because my brother and I just naturally make things fun,

I decided to ham it up and behave like I was at a car show

And introducing this new and wonderful model everyone should have.

My brother says: “See here..even a WOMAN can do this!

Even a WOMAN WITH MS!”

And we both collapsed into down deep gut laughter.

It was a moment I’ll always remember

Because of the ease with which we moved from awkwardness

Into silliness

And a cherished memory.

It really isn’t just mechanical things he fixes.