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The Structure of Values

I am using my diagnosis of PPMS+ to move me from previously unconscious places in myself toward authentic living.

This manner of healing has proven to provide more positive results than any pill or injection the medical field has offered as yet.

The theme these days seems to be values.

What I am noticing is the fact I have taken on so many familial and cultural values that do not seem to match up well with my own.

I have tried to BE GOOD, BELONG, BECOME.

Is it any wonder my body is behaving in confused and weakened ways and is attacking itself in autoimmunity?

Lately, I feel a chasm between the island I am leaving behind populated by the characters and sets and costumes and missives revered by one species,

And the whispered promise of the sage on the beach slightly beyond my reach, singing me home.

I guess I’ve awhile yet to weather the ocean swells with parched lips and the company of manta rays..

The truth of it is: this place of BETWEEN is raw but not without solace.

As I lean over the side of my small but sturdy boat I see the glimmer below of the white sand and the clear turquoise water that tell me soon I can leave this craft behind and trust that when I jump out of the boat, my feet will find solid ground.

And I will move forward in whatever manner my body will allow.

But I know my breath will reach down into my stomach,

Without the constant catch it now has in my chest.

We Shall Overcome. Or Not.

I watched this great film about the explorer ERNEST SHACKELTON.

It’s one of those fabulous IMAX films meant to be seen in a cavernous half-round giant theater.

But the effect on me just watching it in my living room was enough to set me straight for a long while.

The guy was an honorable explorer.

He wanted to do the Antarctic.

Posted an ad saying he wanted volunteers to explore unknown lands. Frostbite likely. Return uncertain.

Something like 2000 guys responded.

He chose a few and left.

Their ship was caught in an icy sea for months.

He left in a little boat with two other guys and somehow navigated through hurricanes and such and reached the ONLY little whaling village within thousands of miles.

The boat broke down all the way across the island from where the people were.

These guys then hiked w/ nails from the boat attached to their shoes across frigid godforsaken land till the actually reached their destination.

And everybody was saved.

Now why did I insist on telling you all that?

Because, if you are like me, self pity makes a place at the table whether we like it or not.

Watch this film and remember what we are capable of..

Steep yourself in the miracle of human perseverance.

Or just watch the pretty ice.

She Eats

Maya Angelou, who is a heroine of mine, shows someone the door in her home if she thinks they are practicing false modesty.

I have always remembered reading that as it so goes against what I was taught.

We were always encouraged to lead with humility and never play any kind of ‘one-upsmanship.’

As I think about this, it’s more than likely a girl-thing.

I bring this up as I noticed that yesterday, sitting at a gorgeous Thanksgiving table, I hesitated to eat the last bite.

Somewhere along the line it was suggested by my parents that it was good manners to leave the last bite of food on your plate.

I wondered, yesterday, at that custom.

WHY would it be good to leave the last bite?

I decided that it signified that we were not too needy.

We had plenty! We were blessed! We were not hungry enough to have to scrape the plate.

Well, yesterday I found myself among old and new friends I felt safe with and LO and BEHOLD!.. when asked if I wanted more of anything, I said EVERYTHING!!!

I actually laughed and blushed at the gaul of it..

The woman seated next to me says: “Modest girl..” out of the corner of her mouth…

I ate two full plates of the most divine food you could imagine.

I reveled in the hedonistic pleasure of being hungry and eating without shame or care.

I see that I have an undernourished part of me that continually behaves with cultural expectations plastered onto me as a child.

A continual ‘taking a few steps back’ so everyone gets their due.

Only then can I satisfy myself.  And by that time there is likely not enough .

Today, realizing that bit of history which does nothing to allow a thriving existence, I PUT IT DOWN.

Funny, these historical madnesses we follow with foggy unconsciousness until we’ve enough of ‘the real girl’ available to make a different choice altogether.

SHE EATS!!!!!!!!!

Thanksgiving

I keep thinking about my sister telling me recently that she saw me as resilient.

And how that one bit of reflection has meant so much to me.

I have always cared deeply about making my life some sort of contribution to others.

Taking care to acknowledge people along my path when they move me in their beauty or magnificent ordinariness, even.

This Thanksgiving, I am most thankful for the gift of my existence.

I am going to spend the day and hopefully beyond steeped in the richness, both grand and gritty, of BEING.

I’m not going to ‘make nice’ and wax on about beautiful sunsets and accomplishments in life.

For this day, I am grateful for the mystery and unpredictability and sorrow and forgiveness and brokenness and peace and the very tidal approach and retreat of life itself.

I woke up this morning and the tide was out.

As I write this post, it creeps back in.

I AM resilient, as my sister says..

Because I am in love with the movement of life.

When I can put myself aside as the central and most interesting character, the rhythm of the thing intoxicates me.

And I move…

We

I am spending my mornings in silence.

No radio and I don’t have TV.

I leave the CD’s in their sleeve and stretch for awhile.

When I eventually get here, to the computer, I’ve often got the thread of something that wants said.

But today… I’m sitting here just looking out the window at all the homes down the hill.

They all have lives just like me; full to the brim with angst and beauty and satisfaction and not.

Their worlds all revolve around the central character- themselves.

The drama gets intense I’m sure, as it does for me.

I’m pretty sure there are a lot of dogs out there rolling over to have their stomach rubbed as mine does.

When the holidays roll in, I usually have these thoughts of belonging to the vastness of the human race and being intrigued by our similarities and differences,

AND..

feeling somewhat like an alien peeping Tomasita peeking into windows filled with the theater of families being together in easy and festive ways.

But my experience is made all the richer in this season we are entering by lending one eye toward the joy in seeing humans be together, love one another, appreciate the OTHER..

..and lend the other eye toward the SILENCE which seems to be the template that everything else springs from..

It makes me feel very whole and connected to keep my attention in both places, oddly enough.

Push

This sculpture is 5′ tall.

I created it by slowly building up the walls in clay and using my thumb to press from the inside of the piece outwards and stopped pushing just as the clay was about to break through.

Something about this process was really satisfying as I did it.

Most of my attention was on the interior of the piece as I worked.

I wasn’t caring too much about the exterior.

The action of coming from the inside and pressing the clay almost to the breaking point left a really lively and raw surface I like very much.

The shape made it’s own way.

It seems uncontrolled and I like that, too.

I kept this piece for my own collection because I thought it had something to teach me.

Something about not caring too much about outer presentation and centering my attention on the ‘inside job.’

The innocent kind of beauty that seems to happen when I concentrate on my own container and keep my attention out of other peoples’ business is the kind of beauty I want more of.

Musical Chairs

During my recent trip to Colorado, I was diagnosed with late stage LYMES DISEASE.

I’ll write more about this later but it was a bit of a thing to wrap my arms around.

After some musing about this new development, I have a few thoughts:

Multiple Sclerosis seems really to be a ‘catch-all’ diagnosis for a bunch of chronic neurological expressions that fall into similar groups; lesions discovered on the brain and spinal cord, either progressive or episodic spasms, weakness, fatigue, eye symptoms, bowl and bladder changes etc, etc…

When I visited the MAYO Clinic a few months back after many thousands of dollars of diagnostics, what they left me with was one sentence: “You have PRIMARY PROGRESSIVE MS and we have nothing to help you.”

In this post today, I wanted to open the floodgates a bit; my own and ours collectively.

What does one do? Who do we trust? Where do we go to collect information regarding our well-being when there clearly is some sort of epidemic presenting itself looking like MS and Parkinson’s and Lyme’s and Lupus and all the other autoimmune illnesses popping their heads up faster than we can name them?

I don’t have all the answers to be sure.

I have questions.

All this confusion surrounding diagnosis and treatment possibilities is soulfully stressful and financially taxing.

It all keeps pointing me back inside myself.

I want so much to BELIEVE those who have spent their lives in the quest for KNOWING.

But I am unwilling to lay my life down in unquestioning acquiescence when there is so very much uncertainty on the wind.

We are all so good at posing with all our cool cowboy gear; guns and chaps and big hats at mysterious tilts and arms crossed as we defiantly say: I KNOW!

I, myself, DONT know.

And that right there, ladies and gentlemen, is what I’ve got for today.

Birds

“AS YOU PROCEED THROUGH LIFE, FOLLOWING YOUR OWN PATH, BIRDS WILL SHIT ON YOU.

DON’T BOTHER TO BRUSH IT OFF.”

-Joseph Campbell

I was thinking about my father the other day. He had a corporate job at General Motors.

He was an alcoholic.

Didn’t really know how to parent that well.

I don’t really know too many things that I’m sure he loved.. (He died when he was 51).

Nature was a solace to him. Working with his hands creating things in his workshop.

He tried so hard to be something he wasn’t.

And drank away the sorrow and confusion and disappointment.

I get it but what a waste.

That whole 50’s thing of the American Dream.

It seems we’re ALL over that one but what’s next for us?

These days I feel like I have zero energy to dust myself off after those birds have shit on me.

It would mean doing the laundry and folding it and walking into the closet and grabbing hangars and hanging clothes back up and picking out new and clean ones that go together that don’t have buttons or ties and don’t look too worn or out-of-date and sitting down on the bed and picking my right leg up with two hands to put the sock on but dropping the leg and picking it up…

You get the idea..

The point of this being that I have a weird preference in my mind and feel grateful for the hard work it takes me just to barely function in a way that lets me make some sort of authentic contribution like this blog.

The key word here is AUTHENTIC.

Yes, the birds shit on me like everyone else on the planet.

I guess the difference is that what I carry left by the birds is visible to everyone I come in contact with.

Do I long for the luxury and elan of a stretch limo to whisk me away in it’s sleek blackness and drop me surreptitiously backstage so I don’t dirty my Armani gown in greasy puddles left after a rain?

Funny… no I don’t.

I love my life because I haven’t the energy anymore to go after ANYTHING that is not authentic to me.

It’s a new girl on the block.

Perfectly imperfect.

I wrote that and my insides go: “YEAH, right…..”

The real girl is a work in progress but I think she’s headed in the right direction.

Extreme Kindness

In my support group the other day people were ranting about various tales of the unconsciousness and often downright cruelty they had experienced as disabled people.

Thankfully, that has not been my experience but I know that being confronted with raw disability face to face triggers able-bodied people in many ways.

In our culture there are not too many places where people can feel really SAFE helping a person less fortunate.

We see the scariness of homeless people in their life-weary vacant faces, filth and disconnect.

There are veterans peaceably holding cardboard signs blessing us and asking for our help.

Because humans are the most untrustable species on our planet, we shy away from extending our hand to those less fortunate in fear of something weird happening in the exchange.

It is easier; more sanitized to send a check to a favorite charity.

As I make my way through my days, I see the utter pleasure and relief in people’s faces and demeanor as I look them in the eye, smile and say thank you for the kindness of an opened door or a watchful eye as I maneuver a wet floor.

I see that people WANT TO HELP.

It seems to bring a particular pleasure and palpable relief for someone to see me with my walker; someone not scary looking.. in fact, quite like them! The softness and extreme kindness offered is a treasured gift for us both and not soon forgotten.

Such a little thing, this kindness connection. Clearly it takes the openness to extend it AND to receive.

Fallout

My entire night last night was a battle in my sleep.

It seemed that everything I’ve left undone, said I would do and didn’t, disappointment I caused in a friend or family was up for review.

I was keenly aware that people probably feel they have to walk on eggshells around me.

They might feel there’s no room to be angry with me or make their true feelings known because I have MS and they think that should be enough and don’t want to load me up with more stress.

It’s something I have felt with others so I’m just aware the possibility exists here, with me.

I could easily go into shame about all the life left undone here.

In fact, I almost titled this post SHAME but thought better.

Living alone like I do has it’s positive points to be sure.

But it also contains the danger of leading a secret life.

I don’t have a partner to hold me accountable.

If I am too tired to do the dishes, I often don’t.. only to be ‘found out’ by an unexpected visitor.

My life has an odd flow to it.

I am often so tired that I don’t / can’t care about the life I’ve left undone.

That is a state I would wish on no one.

I awoke this morning wanting to make amends to all the friends and family who are on the other side of this illness and have to deal with broken promises, irritability, non-count-on-able me.

I am so very sorry for the fallout.

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