It takes a long time to find a way to make a new and functioning life living with a debilitating illness.

At least it is for me.

I can go into self-criticism fairly easily if I forget that the changes I am working on don’t necessarily show up like: “OK! NOW WE GOT IT GOIN’ ON AND WATCH OUT WORLD!”

No.

Sometimes, even to myself I look like just a progressively disabled woman headed for under the nearest bridge as home.

That is when the ability to articulate what feelings I am having and the courage to get my butt over to where I know wisdom grows, saves me.

THIS IS NOT A SOLITARY PATH!

A hidden life seems comforting in it’s ability to render me seemingly invisible.

But the dragon / angel keeps filing her nails on the screen door and eventually I let her in just to keep my sanity.

The changes in me are ESSENTIAL, meaning ‘of-my-essence.’

But also essential in the way that means PRACTICAL in that my newly crafted life cannot take root without these interior shifts and gains.

When I lose sight, I need someone wise to remind me of my largest self.

For me, this could be a group of trusted people, a sacred (to me) place, meditation or a visit to one of my mentors.

Yeah, the way out is surely through..

And when I am surely through with the ‘through’…..

I pick myself up off the ground and put some great lipstick on and make a call or take an action.

And nobody out there will probably ever know the heroics it takes to push on through.

But that is ok because if someone reminds me, I KNOW..

And it is all right.

My dog, Olivia is my primary healer some days.

The weakness in my legs seems to stem from a specific spot in my lower back.

She knows something is ‘off’ there.

This little creature burrows down under the covers and presses her back into the small of mine and stays there.

When she does this we both heave a huge and audible sigh.

How does she know?

What did I do to gain the privilege of her company and healing?

If I cry, she lays on my chest with a furrowed brow and licks away my tears.

She keeps licking until I am soothed and quiet.

I see her face becoming progressively whiter by the day.

I know part of what she does for me is to take on much of the energy I release as I heal.

We are both working very, very hard.

People tell me they are not sure they could negotiate this terrain I deal with moment by moment.

The truth is we never know what we are capable of until called to the plate.

I do what I do but I am blessed not to do it alone.

This is my favorite title of a piece for all time..

And it is true.

I always wanted a Native American friend. (see?? the wanting thing..)

But they don’t like me.

And I know exactly why.

I am an ingratiating person by nature.

I like to connect.

If you meet me I will likely have a smile for you.

Native people can smell truth and point to where you’ve hidden it in two seconds.

They do not meet you with a smile and seem frankly suspicious if they carry one at all.

Goodness knows, they don’t really have an overflowing archive of stuff to be thankful for.

One thing they have that we want is the ability to contain themselves.

And be quiet until something presents itself to say.

I respect these things.

But in Native people, these qualities were born out of pure survival.

They kept their religion, anger, knowledge of the land and the stars, loves and losses hidden.

Because they could not afford anything less that a hermetic seal on their life ways.

I am not so indiscriminately ingratiating these days.

My own hermetic seal is at the ready.

It still feels weird to practice NOT TRYING TO CONNECT.

I go places and purposefully GIVE NOTHING AWAY WITHOUT A PROMP FROM THE UNIVERSE.

No smiles, no eye contact, no participation in the collective mess UNLESS I AM URGED TO DO SO.

And then.. then I find that the ‘vibe’ of the thing I have chosen to connect with is elevated in some way.

Not watered down by overuse or inattention or carelessness in any way.

There is purpose behind my connecting… not habit or need.

This way of being saves me SO MUCH ENERGY!!!!!!!!!!!!!!

I am just beginning this practice.

Just beginning all over again.

Oprah always has the last page of her magazine full of “THINGS I KNOW FOR SURE.”

A whole page!

Imagine…

Is it ok to hate her a little bit?

I went to Fredrick’s memorial the other day.

He took his own life at the top of his game.

He lived a very big, big life for still being in his 30’s.

Lots of people depended on him, looked up to him, had expectations of him.

He was a very smart, giant-hearted, rich and generous man.

He began as a collector of mine.

He had very good taste.

But besides that, he was an extremely refined gentleman and I loved him.

Celebrating him as we did the other day made me think about his choice to throw in the towel.

It shocked everyone and no one more than his beloved wife.

I thought about the various ‘lines’ I have had in my life so far.

Lines I never thought I wanted to or could live beyond.

Peed or shit in my pants? Done that.

Can’t find the strength to lift my body up to sitting from lying down and convinced the weakness was forever? Yep.

So depressed you can’t find the where-with-all to find a glimmer of an appealing future? Uh huh..

The thing is that each time I feel I have reached a line I can’t/ have no interest in going beyond.. I somehow pull it together to stick my toe in the waters beyond the line and find the weirdest thing…

That it was not my real ‘line’ after all.

And that the me who crossed the line is soaking in a new humility that helps me drop some of the hard and angular density of being human and take on a bit of translucency.

I can only imagine that my friend, Fredrick found himself at a line he could not find his way through.

If I love him, I cannot judge him for his choice.

Do I feel gypped because I don’t get any more of him? Yes.

But that is all about me..not him.

I loved you, Freddy. Love you still.

You left your mark on us and we wish you peace.

I am more because you were here.

Before dawn I throw crumpled clothes on and, out of habit and desire, put some lipstick on.

I smile at my dog’s high-velocity tail and strap on her leash.

I unplug my wheelchair from the charger and sit down.

I wheel over and open the door to ‘out there.’

It rained just a tidbit last night and so the air meets me like a lover; soft, mysterious, full, inviting.

I love the half-dark.

The colors are dimmed, the air quality elevated and chilled and perfumed.

Songs are begun and ended on cues I can’t know from treetops and under tangled brush.

My breath slows.

My brow and jaw let go into original softness.

My dog feels the release in the loosened grip on her leash.

The wheels of my secondhand chair make a sort of tired but bearable sound.

I breathe.

And pray.

And breathe some more.

There seems to be enough.. right here in this moment.

I am full.

Of nothing.

Well…… this here made me pause:

It is almost funny.

But for me, the one who now lives her life from 5-10 am and then again from 7-11pm because of the heat here,

The thought of having to find a dime for the privilege of sitting down is just too much for the girl.

Honestly, is this a commentary on the preciousness of PAUSE or WHAT!!!!!!?????

It is most certainly a cultural thing that puts the fear of god into us at even the THOUGHT of a midday siesta.

Do more, be more, earn more, say more, go more places, read more, accumulate more.

MS is the drill sargent for LESS.

One just has to get used to dropping dreams and capabilities and muscle strength and pride and plans along the roadside.

All of a sudden, after years of unloading, you lie down for a rest and your heart starts beating wildly.

Oh my God!

It is 2:00 in the afternoon and there is so much STUFF TO DO! I can NOT lie down!

I fight this fight in myself almost every day.

It is so very stupid.

I need rest though I can’t seem to allow it.

The heat is really the best antidote for this neurotic wave of ‘cultural norm’ I ride.

What would happen if I gave myself over to the wretched weariness?

Who would I be if I welcomed it as a signal to stop?

Is moving faster and more, BETTER?

For who?

And why is the rest pill so hard for me to swallow?

If I surrendered to it would I ever get up?

How do you make a life in the bench-sitter lane?

Is desirability all about productivity?

Is the space between as valuable as the form on either end?

As I keep dropping coveted stuff by the wayside under the forced discipline of MS, I am being asked to fall in love with emptiness.

It actually has quite an ‘elan all it’s own.

But I’ll probably be asked to drop that too..

I’m lucky when I think it is funny that I notice myself making up intricate stories about the future.

I say lucky because it is so seductive to execute a full-out novella when really I only know the first few words for sure.

Let’s back up here..

There’s a man.

Then there’s me.

We feel connected in a sexy and invitational way.

We really like each other a lot. Respect one another. Can sense a little bit of the ‘us’ behind each of our backstories.

So we inch a bit forward to test the waters on a ‘kindof date.’

We share a table and it is CROWDED with all the expectations, longing, assumptions and tangled webs of two precious humans hungry for a soft place to fall.

I wanted..

And he wanted..

And we missed each other in all the wanting.

The essence of our connection which is pure and real and very rare is not meant for lovership.

It interests me how the instant a powerful energetic synergy is perceived between two people we immediately think it is about a particular kind of intimacy.

These days, I see myself drawing people into my life who support me on very essential levels which have nothing to do with staying the night.

I know the world is moving ever faster because my past is full of relationships I knew were not essentially supportive yet I stayed in them for years.

I love that I can trust myself more easily these days.

Recognize the many, many faces of love.

And not feel I have to take them all home.

Yesterday, I had a much needed massage as I fell the other day.

Not hard but enough to weird my body out.

Goodness knows, I have seen my share of body workers in the life of this disease.

I am a discerning client to be sure.

In order for me to glean any benefit from a session the bodyworker, whether acupuncturist or masseuse or physical therapist or chiropractor must possess a few qualities:

1. INTEGRITY…They have handled the sexual boundary issue. I’ll know in an instant if their energy is other than on the task at hand. Healing can only happen supported by an atmosphere of integrity. I don’t have the energy to wade through other people’s ’stuff.’

2. EXPERTISE… Probably all knowledge can be learned but in certain cases I have had the honor to work with people who ARE the knowledge, meaning they don’t seem to have to work to access it; they just embody the essence of healing. Rare birds, indeed.

3. COMPASSION… I am not sure you can be a true healer unless you have been shattered in some way yourself. I am not certain we are born with the oceanic capacity for being with another’s sorrow unless we have experienced some of it ourselves or as witness to someone we care for.

4. ABILITY TO BE A CONTAINER.. Signing up for a healing session can be full of surprises.. tears can come or limbs can tremble.. If the healer does not have the ability to provide a safe place for the healing to happen, healing CAN’T happen.

Yesterday, I was so weak that I could barely get up on the massage table.

When up there, I realized the privacy sheet was crumpled up at the end of the table under my thigh and feet.

I struggled and moaned to try and grab it to cover myself before he came back in the room.

Couldn’t do it.

Because I felt totally safe with him I had some embarrassment but no shame as he came back in the room and there I was.. butt to the wind exposed..

I told him I could not reach the sheet to cover myself and he untangled it from my feet and draped it over me.

The session we had was profound in the level of release that occurred.

The letting go that began yesterday is still happening this morning as I write.

I am so very grateful.. for him as the true healer he is and for myself for having the level of discernment and courage I do and for the GRACE that arrives when everybody has their hat on straight yet tipped a bit in homage toward the great unknown.

Cross is a strange word.

It is a religious symbol, yes.

And used differently it can mean sourness as in: “I am cross with you.”

You can cross over or into.

Cross one mushroom with another and get a third.

Cross out a whole sentence.

Or cross paths with another.

The gist seems to be a meeting point where one thing joins another or pretty much obliterates what was happening previously.

I heard someone on the radio speaking about the symbology of the cross in Christianity.

He described it like this: The horizontal line is representative of our very humanness.

We traverse these waters and have our various experiences, good and not so good.

The generator is our WILL.

We will ourselves forward and shoulder the very heavy HORIZONTALNESS (my word..) which certainly can be peppered with adventure, intrigue and golden things.

If we are fortunate, the luggage gets too heavy and we put it down to rest a bit and see a street sign still dripping with fresh paint with only the word “OTHER.”

We are so damn tired of the road and the weight and the willing of it all that we haven’t the strength to keep to our plan and so we leave the bags at the corner and make the turn.

The only thing we take with us is surrender.

And the turn opens to us and keeps opening and we fall in love with the question mark.

‘Till we get scared and need our favorite shirt from the left behind luggage and we retrace our steps back to the crossing.

But now the beloved shirt has a moth hole.

So we leave it at the side of the road and make the turn once again…

…and again..

..and again.