Get Outta That Chair

hand-painted silk
This thrills me..



hand-painted terry robe

I am almost embarrassed by how often the words “I’m sorry” float from my lips.

The thing is: I truly AM sorry that I am the queen of canceling due to fatigue

Or I missed your birthday.

Maybe I have disappointed you in my self-centric healing process.

Tending to the self can make one unpopular at times.

Is it better for me/others to just ride out the life stuff stoically

And let silence reign?

Hoping against hope that the necessary re-knitting will happen quite magically without us doing anything at all?

I know I have tended to diminish myself at times with too much “I’m sorrying.”

But then again- there are those in my life from whom I NEVER remember hearing the words;

Sliding blithely along far from the tempering humility brings.

Being right costs so very much.

I am better these days at using an “I’m sorry”

When my integrity asks for the utterance

And not just to ease the waters somehow.

A good and true ‘I apologize..”

Is the grand leveler.

It can make alive previously dead zones between people

And provide food for hungry souls.

I hate going hungry.

Authentic Personalities

This is what we look like before we care what we look like:


The Art of Disappointment

hand painted silk robes, 1986

When I moved into my current apartment an ecstasy welled up in me because it was bright and clean and mine.

Living here for a few weeks has weaned me away from that initial rush and left me hollow.

I am living essentially in a parking lot..other apartments face mine a scant 30′ away on one side but mine borders the parking lot on two sides just 6′ away from my bedroom window..

I wheel 8 blocks over and through vast concrete swaths of other apartment complex real estate to finally arrive at a tiny patch of green for my dog to relieve herself and me to pause and breathe in the air of life.

Santa Fe is a tri-cultural (Anglo,Hispanic, Native American) city and I am feeling the bubble of ‘anglo-privilege’ I took little notice of when I was a fully functioning part of this community.

I could afford to keep my ‘tribe’ close in and choose to where I was to live.

Since I do not have the luxury of working, my surroundings are crucial to my health and well-being.

The reality remains I am in need of the governmental assistance I receive and am grateful for.

My apartment complex is populated with many, many young Hispanic mothers raising large families of small children alone.

They are tired, angry and spent. Rightly so.

I am a foreigner in their eyes and they are to me as well.

I thought I was noticing racist tendencies in myself as I began curling my energies in toward myself for protection against their steeliness and indifference.

It isn’t racisism after all as I discovered; just a desire for a quality of life with more possibility of connection, feeling of safety should I need their help and the absence of armoring-up.

And so.. as providence would have it- the complex I have always wanted to live in has called and there is a spot for me there at the end of the month. I have been on their wait list 2 years.

I will move once again end of this month.

How will I ever manage to rally once again is anyones’ guess but I am choosing quality-of-life as we never know how much of that precious stuff we will be granted after all is said and done.

I call on my adventurous angels to assist me emotionally, physically and spiritually.

I am still on the road to ‘home.’

Holding The Opposites

hand-painted terrycloth robe

Yesterday, I wrote a post I am not proud of but I promised not to edit myself as this seems the only way to see what is true for me.

I have made my life’s quest to become authentic.

This, for me means having the awareness of WHAT IS; pretty or not, slimy or smooth.

I awoke this morning eager to get to the computer and delete the post.

But I won’t because it is part of me.

Sometimes I am the woman who knows the truth of what I began the post with which was a quote regarding how to hold suffering.

Other times I am the woman who read over the finished post and declared it (and me) “shit.”

Last evening I attended a C.G. Jung Institute of Santa Fe community program which was a forum entitled: THE RELEVANCE OF JUNG’S PSYCHOLOGY TO OUR POLITICAL CRISIS.

I see a Jungian therapist and was interested in what might be said during an evenings discussion of the polarities we face intimately which manifest themselves politically.

One speaker told the story of Mitt Romney’s family dog Seamus, tied to the top of his car (but with a homemade windshield installed) to endure a 12 hr. road trip. The result was that Seamus had severe diarrhea. Mr. Romney hosed the dog and car down and continued on.

This speaks of severe detachment. Would he care for me if he treats his dog with such abuse and disrespect?

Another presenter spoke of the disappointment we feel in Obama’s reticence to be the mover and shaker some of us hoped he would be. (Why doesn’t he do what we want him to do and do it quicker?)

This election is unnerving for many reasons- one being the ‘winner’ could represent either polarity and what will we do..each of us if our guy doesn’t win?

Should I hate the part of me who ‘shit on myself’ and curl up in a ball as I throw in the towel?

One of the forum presenters mentioned Barak Obama’s invitation to all of us: something like ‘If you don’t like how I’m handling things – MAKE ME hear your desires/needs.. ‘ (my paraphrase)

The point being that if we are passive about handling our own personal muck and mire, paralysis and discontent then we have little right to demand someone else fix it for us. Barack was telling us that he can’t do this alone and was inviting mature (his word) ideas and solutions. He was inviting us to act.

But I don’t think we all need one another enough yet. We seem to still enjoy placing blame to rid ourselves of tension.

I pray for the ability and courage to walk in balance, to make room for what is and remember that through actions of my own I can bear the tension of the opposites and thereby live with more compassion for myself and others.

Core Of Goodness

hand-painted textile

Can a trip to the Verizon store feel like church?

Yesterday, I wrecked my phone by tossing it into the pouch of my walker. There was a cup of tea in there already…oops.

Since I have no land line my cell is my ticket to an extended life should I fall and not be able to get up so you can see why my next stop was the Verizon store..

The thing is- the main place to do this task actually feels like a trip to Satan’s lair; 2+ hours of waiting in enough electromagnetic
juice to fry bacon on one’s brain, close contact with irate, impatient people intent on their own ‘specialness’ and no chairs to rest in.

I went online to see if there was another location in town. YES!! and the reviews people had left were swimming with praise. This place was less that 2 miles away in downtown Santa Fe.

I was conversing with myself out loud as I walked toward the front door: “Cath- I know you have no energy and it is hot out here but you have to pull it together to do this.”

I opened the door and LO! I was the only customer! I walked to the counter and there was Derrill with a genuine smile and an evident kindness.

As we began my order I saw that standing for this transaction was not in the cards for this girl and so I sat. Derrill proceeded to walk me through my options, bring me paperwork and explain techy stuff by continuing to walk all the way from behind the counter to my chair and back as the time went on.

When I had to use the loo he went before me and opened the door for my safe passage.

Before I left the store I had every question answered, each task not needing me personally to perform completed by him and a bag with organized paperwork, new phone and a very full heart.

Ad so- was that experience all that different than church? Is that substantial feeling of communion that passes for kindness a lesser version of the reverence we seek in a house of worship? Perhaps.

All I’m saying is that in the midst of hot summer days with humanity massing in readiness for the high-season here, in Santa Fe there is a Verizon store with a guy in it named Derrill who plumped up my heart and made me feel happy to be alive in the most unlikely of places.

Blood Love

hand-painted silk

My sister, Jen is here for a visit. Last time we saw each other was two years ago. In that time she has packed up a family and moved to Chicago, endured 18 months of a commuting husband, 2 kids graduated from high school, one cat died, she found a new job in a new city, started book groups to attract like-minded people into their new life, decorated their new pied-a-terre with utter aplomb and showed up at my doorstep the other day looking spectacular.

I love my sister.

We are easy with one another. And we laugh.

We tell and re-tell the story of being fed ‘eggs goldenrod’ when we were young; poached eggs on toast with grated yellow egg yolk sprinkled on top and for dinner when Dad was responsible for us we were treated to bowls of orange juice with apples cut up and floating in it.

Then there was the gerbil she was so eager to give me which chomped down on my finger and I tried valiantly to shake it off (took awhile..).

These are the memories that make up sisterhood.

Here she is now with me- sitting on my elevated toilet seat, walking the dog, uber-cleaning my ENTIRE kitchen for me, eating chips for dinner, loading the walker into the car, telling me about city life and the kids and how it seems a legacy from our mother that we are aging so well!

My heart is happy to have her here. I feel so good about who we have become-together and separately.

I feel that low and deep hum that is family blood flowing strong and tenaciously. The river has always been there but in youth whipped up to a froth with misunderstandings, jealousy and the cruelty that often accompanies individuation.

Here we are, my sister and me..

Just sittin’ up here on the deck of a boat in that river with a beer..

Lookin’ out at the world with interest.

Quiet and content with the punctuation of laughter.

I Love You

textile design, 1985, pigment on wool flannel

I love my bed (this is not my bed pictured here..).

I love my bed but I don’t want a steady diet of her.

The very thought of it scares me, frankly.

The past few days have found me with a fever which elevated my body temperature

Significantly enough to render my musculature inert (read: I could not lift myself out of bed).

Nap-time is great. Sap-time is not.

In the night I tried to get up only to slide to the floor in a heap.

Now- this is scary shit.

Cold floor.

Dramatic out-loud conversations with myself.

Some tears but mostly it felt like taking the SAT test from long ago:

WHAT is the answer to the question of how to get up?

I had my phone and knew I was essentially safe.

It took me a couple of hours to get to my knees and then to do what it took to return to bed.

It was a long and messy voyage.

I was not humiliated because there was no one there watching

Except my dog

Who came to check on me every so often but left me there to figure it out knowing she could lend support

But hangin’ on the cold floor with me for who knew how long

Was not in her plans.

Which was ok by me

Because I needed my fullest accessible ‘push through’ energy to do what I had in front of me.

Here I am a few days later..

Back to the Cathy who can do all kinds of stuff.

Heat (fever, outdoor temperature) is the vampire MS negotiators face

Which bares it’s teeth in sometimes surprise visitations

And leaves it’s teeth marks on our neck

As a parting gift.

Following an experience of having to surrender and redraw the map in moments like these

Gives me a leg up on the life-skills needed to die a little every day

In order for the REAL CATH to please stand up (or whatever) and be counted.

This, to me means stepping out once again with a newer sense of humility, the honest-to-God knowledge of the impermanence of things (with and without pissiness about it), gratitude for my victories such as they are and the sense my heart is more porous and able to be moved in deeper ways.

When you (we,I) do the work of dying a little everyday to who we were

Taking lots of naps is very good medicine.

How To Choose A Healer, Therapist, Bodyworker, Teacher

detail of painting on wool flannel

Since my diagnosis of MS in 2000 I have had the privilege of working with many, many healers of all types.

I say privilege because having access to so many various modalities in the healing arts by living in Santa Fe as I do

Is something I do not take for granted.

A diagnosis of PPMS has a peculiar freedom sewn into it: that of the reality there are no medications with a history of relief tagged for PPMS-challenged folks like me and so we must find our own way.

My body has most often chosen a more natural path toward healing anyway, which is serving me well in hindsight.

When I say ‘natural’ I mean that I have chosen to address psychological, energetic, physical, dietary and spiritual means to assist me in creating a thriving life.

Santa Fe is oozing with every kind of practitioner one could ever desire. I have spent too much money and time in my incessant search for hope.

Because I have such an archive of experience, I offer you these few things I have learned along the way regarding how to choose someone to work with where the likelihood of achieving positive results is high:

1. Listen to your body’s intelligence over your mind’s.

Depression may indeed be assuaged with a drug but you are doing yourself and everyone else a disservice if you don’t give yourself the opportunity to open the door and start making a relationship with your personal monsters. For me- shame has been a huge issue I still have to attend to. I see how my body goes into ‘lock-down’ because of it. (as an example)

2. Is this person a trustable space for you, personally?

Reputation is essential, surely, but not the entire equation. My first foray into the world of neurologists had me in the office of the most highly respected MS doctor in the state. I left my appointment feeling weak, confused and much sicker than when I arrived. I could not go back. Each neurologist I have seen has had one thing to offer: yet another MRI which has been expensive and told us very little.

Another experience which helped me learn to discriminate what a safe place to heal feels like (and doesn’t) occurred with an energy worker who was clearly an adept in his field. During my session my body began shaking uncontrollably which scared me. The fact he did not call me the day after such an unusually powerful and strange session told me all I needed to know about him.

Often, I have experienced people who have not done ‘their own work’ regarding sexual boundaries. To create a safe place for someone to heal demands rigorous boundaries to be in place in the sexual arena. If I feel any vestige of flirtiness my guard immediately goes up and I am unable to surrender to the possibilities present in the room.

A trustable human means, to me, that the person has attended to their own shadow, has cared enough to do the work it takes to become aware and thus be able to leave it outside the room.

3. Accept nothing less than results.

This seems odd to “Duh..” Except in the world of the chronically ill we can become blind in our quest for support and healing. We(I) tend to stay too long. Results can be subtle, happen over time but my trial period with new practitioners is very, very short these days. I can not afford it financially or on a soul level.

4. Is the person strong enough of character to deal with ALL of me?

Meaning: can I get angry, disagree, challenge them, be sad, emotional, unclear as well as ‘on my game’ in the largest sense not feel them retreat? Illness is a lonely business and if I am paying you for your expertise and support I have to know you’ll stick by me no matter what.

5. Do I leave feeling lighter?

This is a good litmus test for whether you are moving in a vital and health-full direction together. I don’t mean free of conflict,confusion, symptoms. I mean does your soul feel backed-up, recognized and not alone?

Do you have other things you’ve found helpful in making an informed choice?

My Sister

hand-painted silk, 1987

My sister has style.

She didn’t always, mind you..

It happened when she and my brother-in-law moved to Dallas.

She knew that in order for her to be at all visible as a woman in that scary town she must up her grooming ante. And she did that. In spades.

She never went whole hog into the big hair-obsessive presentation thing.

But she took what was best and left the rest

Which revealed her own style in the classiest of ways.

Her birthday is today.

I wanted to give her something to tell her I love her.

Because we are ‘sans-mother’, we have both stepped in to make sure a high level of recognition is passed between us centered on the celebration of beauty and class and sass on birthdays and holidays.

She knows me well; meaning liking some parts and trying to lend a blind eye to the rest..

As we grow older the edgy parts of our sisterhood fade to grey and something surprisingly beautiful, comforting and real shows it’s face.

She nurtures.

I mean, REALLY nurtures.

She is a knock-em-dead (?) gourmet cook for starters. Beyond this it is her family and the core of goodness she has concocted by mothering her kids the way she has and tending her marriage with whatever it is that has the two of them still in love, respectful and having fun together which I admire.

We are different seeds from the same plant. She: watchful, reserved, action-oriented, adept in most realms I am not. It used to be an irritant but now has become an inspiration. Where she is measured, I often fly without my ruler. I learn from her. And she from me.

My sister has gifted me in this past year with the kind of support and love which takes a heart, wraps it in the finest gold and furs and ribbon and leaves it to rest in the sudden softness and security of what was before a very deep wintry chill.

And so.. on this, the anniversary of your birth, I give you, my sister this gift of love…

The recognition that for me, you are:

a woman of style and substance
pretty good cook
wicked sense of humor
amazing mother and partner
generatrix (?)
sensitive to nuance

I am so sorry for the times I have hurt you or disappointed you or caused you sadness or confusion.

I can not wish those experiences away for they were each a part of getting me here..

Here, as I stand leaning into my ‘good’ leg and feeling the miracle of your support which eases my willful and often weary stride,

I thank you.

With love,


Talking Down

textile design, hand-painted silk, 1987
Over the years I have seen nearly every neurologist in Santa Fe and a few in Albuquerque.

My experience is that of feeling sick to the core as I left the office. I arrived feeling fairly centered and lively.

What happened? And why is it important?

In each instance the neurologist was entirely sure of knowing what he (most often though not always) knew.

By that, I mean that the system he had studied and sweat over to corral into the brain acted as his bible and nobody could tell him any differently.

The knowledge was etched there, and he had a white coat to prove it.

I actually am not bitter but more interested in the healing aspect of this dynamic.

MS is a slippery slope and my research has told me very few specialists in the field are truly sure of much of anything. Yes, there is a grab bag we, as patients are given at the point of diagnosis filled with options for treatment.

And yet, the efficacy rate is minimal at best.

I, Cathy, am inhabiting this body and have my own empirical knowledge of what works and not.

When I am in the presence of ANYone who is disinterested in my experience of self, I just pull up the moat and find something more interesting to do.

I absolutely love being around smart people. I learn things and my life is enhanced. There is a way to be smart that feels derisive

And a way that feels inclusive.

Healing, in my experience, absolutely never takes place in a polarized environment.

Love is the same. A bridge must be there for each participant to choose to walk.. or not.

I’m just saying the choice must be there and entirely respected.

If you are so sure of knowing what you know then where is the room for inspiration or possibility or healing in the face of poor odds?

As my diagnosis reads: PPMS, I register that information, research, study and devour what is available to me and make healing decisions from there.

Seldom has a neurologist guided me toward anything other than another MRI and a cursory readout of lesion activity.

Our medical (political, economic, environmental) systems breed loneliness

And healing feels so very far away.


detail of hand-panted textile

” It is important to have a sufficiently elevated life condition so that you will be able to calmly accept whatever happens in life, striving to put problems into proper perspective and solving them with a positive attitude. Happiness blossoms forth from such a strong and all-encompassing life condition.” — Daisaku Ikeda

I installed a new support in my bathroom..

Keep in mind that I am an artist

And care deeply about aesthetics.

So- WHAT is a girl to do with the VISUAL ASSAULT

Of this elevated commode seat, I ask you?


BIG, bulky and entirely ‘hospital-fare’ looking.

The thing is: the assist it gives me helps a lot.

How does one buffer these marks in time which could so easily be turned into tics on the wall

Measuring decline?

Each time I have invited assistance of this sort into my life;

1. AFO leg brace
2. knee brace
3. Walker
4. Power wheelchair, ramps

I find the need to do an ‘ego-overhaul.’

The initial sting of present reality asks to be dealt with.

Am I less? Sicker? Farther down the rabbit hole of a carved-in-stone diagnosis?

Is this new thing EVIDENCE for that story-line?

“Cathy.. Do you deserve support?”

“Indeed, I do.”

“So get over yourself and receive it gracefully.”

And so… I do.

In this case, I knew I needed a visual and energetic buffer of some sort to assuage the assault..

I took an exquisite piece of silk, handmade lace I inherited from my grandmother and draped it over the elephant in the bathroom.

The incongruity of it has me laughing when I see it.

And so… I have slipped the clutch of ego once again

And crafted a better story.

I am so entertaining to myself!

And onward I go

In the quest for crafting a life of beauty.


textile design, silk jersey, 1985
I lived in the seedy part of Boston’s South End in the 80’s creating hand-painted textiles for men’s and women’s wear.

I was surrounded by people eager to shock, startle and roar their way through life by separating themselves out from the masses in some way and finding a smidgeon of identity in this way.

Oh my goodness… I felt so lost and uncool.

I came to work each day and built an energetic bubble around myself and communed with color and brushes, dyes and fabric.

I have spent my life trying to find an identity that felt like natural me. It has been years and years of trying. I had no idea how to approach the quest for authenticity other than ‘trying’ to get there.

No longer do I have the energy for TRYING which is a true gift in illness. I have had the good fortune to segue into pockets of BEING and care less and less about coolness.

Because horizons and shadows are really pretty uninteresting to me, being more intrigued by the present as I am- (periodically, mind you….)

There is space enough to register authenticity when I meet it.

These photographs came to me yesterday:

To me, these images represent the treasure we all are beneath any posturing or pretense.

I look and experience only beauty.

Yes, his body probably doesn’t look like yours.

Can you feel him there?

See his light and reverence for the gift of life?


I can safely say you will likely not forget what/who you saw; GUIDO GABRIELLI is the publisher of Italian YOGA JOURNAL.

I can say that because when truth is put on the table, everyone knows.

And a mysterious silence rolls in… authenticity is here..

At last.

Authenticity is here.

Gifts I Give And Am Given

textile design on wool flannel

This year found me having to re-think my gift giving over the holidays. I hadn’t the cash to go gallivanting across town hither and thither in search of the perfect THING for those I love.

I settled on writing a letter to a few friends, family, services I use and places I go regularly telling them they make a difference in my life; a BIG difference.

I told them my life is so much better because of them, that I recognize and celebrate their goodness and wanted them to know I am over here feeling rich because of their presence in my life.

The self worth issues which haunt me came from a never-ending question in my very being: ‘Do you see me?’ ‘Do I matter to you?’ ‘Are you glad I am here with you in your life?’

Because I essentially had to create my own foundation for lack of what seems a child’s birthright, I now know what it takes to feel whole and securely connected from the heart.

This has been a year of miracles for me. My amazing family and friends have stepped into my life with a kind of support and love which is quite overwhelming in it’s commitment to my well-being.

They are making sacrifices in their own lives to benefit mine. I hate it that I need their help. I feel too transparent and adrift in the ‘life-muscles’ department.

And yet- they SEE ME here…

Making my way the best I can with mistakes and confusion and successes; all of what it takes to create a new life when circumstance befalls us..

They are giving me love.

And that has been my gift to others this year as well.

I leave you on this Christmas eve with this:

Disability Perks

hand-painted wool flannel, 1987


In my new and astoundingly satisfying home I have a chair.

A white egg chair to be exact.

It has always been my safe haven in a storm; safe as the downy underwing of a swan.

Post-relocation discombobulation recedes far into the shadows as I wake and ease into it’s fold.

I sit there as dawn dresses herself and I enjoy her costuming while entirely forgetting about my untended hair and other ablutions.

I sit there.

And I sit there some more.

I do things like look.

I look at the masterfully crafted rock wall.

I look at the satisfying placement of needles on the juniper tree outside my big picture window.

My dog is snoring at my side and she is impossibly yielded into sleep with a slight press into my thigh.

I want to get up and address my coffee hankering.

But I can’t.

I’m too tired and content.

And so I feel the want of it

And let it go

In favor of more sitting.

And my breath drops into my belly

With a sigh

For the wisdom that arrives so unexpectedly with weariness.

Disability is the doctorate course

In authentic reordering of values.

What used to be accolades and cash and luxurious filling in of each and every empty place

In the heart and home and mind

Has shifted to the love of the ordinary,

Gratitude for having the means to provide for my true needs,

And moving toward emptiness for the pure pleasure of it.

That was a big sentence

But it wanted to be written that way.

The perks of disability seem to begin

When we fall in love with vulnerability;

It’s porous and yielding quality

With the benefit of the age-defying qualities

Of true humility.

Get shattered- hurt bad…

Get humble- start living.

“Still More Beautiful Later..”

hand painted silk robes, 1987

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.

The View From Here

hand-painted wool flannel upholstery, 1990

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….



Gifts of the Mother

hand painted terry cloth robe, 1986

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


Albeit a bit grimy on the backside.

Getting Dressed

textile designs, 1987,silk

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



textile design, 1987, silk

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)


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.”


I’d rather this gift

Than running a 4 minute mile.

But I wouldn’t turn it down

If it was offered………………………………..

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