walking out of the pain clinic's building

out the glass door
onto the pavement
she notices something

her eyes pull her towards it
looking downward
focused and intent
colorful
yellow
with four dots
one on each wing
four beautiful wings
a butterfly's

a butterfly's body on pavement
she hesitates
she notices; a man observing her
she thinks; he must wonder what keeps my head bent towards the pavement

And then she bends down, like to a child
and gently lays the butterfly body onto her palm
quickly cupping it between two hands before the wind grabs it and sends it sailing to nowhere

Cupped between two warm hands, safe from wind that plays with the falling leaves, blowing them upward and chasing them until they settle somewhere else and again...

This butterfly body has a different destiny
Cupped in her hand, the Trolley driver notices its beauty
At the jewelry store she asks for a box
The sales-lady comments on its beauty
And at home, her mother admires its beauty

Beauty
can sometimes
take one's mind
off of pain

Butterflies shed their bodies and flutter into my soul

If i give you a piece of me
Will you give me a piece of you?

And then can we split the two pieces into halves and mix them all together and make a small mosaic to hang above our heads?

But, what if i want my piece back?
Will you return it to me?

Or will you say that it is all glued and pieced together and that I cannot have it back.

Then, if you say that, I will take it off of the wall and put in the drawer so that I will not have to look at it anymore. So, that I won't have to remember how once I hoped and believed that our pieces would fit together.

But, if you come back to tell me that it is okay, and you tell me that I can have the piece of me and the piece of you then I will know for certain that you trust me with your piece and then I will love you to pieces.

Trust in Love.

My body is my ship-wreck. I have yet many jewels and treasures to discover.

My body is my temple.
And my prayer-book.

It is my compass and my map.

My body is my beloved.
And my beloved is mine.

Yes, I know.
Yes, I hear.
Yes, I vow.

I vow to help you heal.
I vow to accept you as you are.
I vow to learn from you.
And to teach from you.

My body is your body.
Your body is mine.

My body is me.
My soul is pure.
My body is wounded.
My soul will guide you.
My body is aching.
My spirit will comfort you.

My ship-wreck is mine. The treasures that lay underneath it are beautiful. The collections that traveled with me into and from distant countries. The wildest storms came and tore me apart. Here I sunk. In the middle of the ocean, deep down to the dark my splintered self fell to the ocean floor.

What I have found here on the ocean floor are the secrets that I carried and collected with me everywhere. I dig and search beneath the planks, the flanks.

And what I find are the secrets, the collections that I carried with me everywhere.

And now it is time to share. To share with the life that has sunk to the ocean floor. Slowly I move between ship-wrecks. Tragedies of similar storms, different times, same place.

I visit the ship-wrecks and share my jewels.

There is a whole life here on the ocean floor.

It clamors and calls and I can hear it all so clearly. I know the cries so well for I cried and called them all before.

Oh, the ocean floor has become my new home. I walk through the underground ghost-town and i wonder how long has the ocean floor been crying for?

Apparently cutting down on the Lyrica did nothing good for me. My pain level has been much more erratic, catching me by surprise and pushing me back into bed with a vengeance. I wanted to see how my body would respond with less Lyrica, the hope of one day getting pregnant pressing me to see if I can handle less medication. It seems that the answer is no. Since I have gone down on the Lyrica I have been needing to use my other meds more; Opium suppositories, Valium suppositories and Marijuana. I have been bed-ridden more often and have been less able to stick to plans. I will be going back up to 100mg of Lyrica 3 times a day. I hope that things even out again and that the increase in pain really is due to having decreased the Lyrica. I need by baseline back so that I can work on improving from there. So, it is me, Lyrica and Cymbalta 4ever. I sure hope not. Cymbalta leaves me awake, wide awake most nights. I prefer to not sleep then to go back  to the pain levels that tormented me before I got on Cymbalta. Damn though, it is really hard to not sleep.

I really hope that I will be able to handle the bus-rides to Waltham and the jewelry classes. I start two new jewelry classes this week. Last week I started a mosaic class and I could do it standing!
What can I say? It is very hard not being able to do the things that come to me so naturally. I know that I will be very good at working with the metals. I love delicate and precise art-work. But will I be able to handle the sitting pain? Will my pain spike and leave me searching for a place to lie down? Two friends of mine live walking distance from the school so this gives me a bit of a sense of security. I have to hope that my pain level will be under control again and that .....i so want to create and feel proud of myself and i so want to be able to enjoy creativity and creation again. The process of discovery has always touched my heart so deeply. Will I be able to enjoy????
Please, i pray. Staying at home in my room feels endless. Oh, please.

I wanted to go to Vilna Shul, to meet friends and to pray but my pain level spiked so sharp that instead I went to lie down and put not one but two Valiums up my private pussy kitten. I have to work on not adding depression onto pain, accepting that tonight is not the night for me to go out. It helps to be able to check in with the Pudendal Support Group on Facebook, to feel like I can hang out and communicate with a lot of others who understand my plight completely.

It is weird but I do have faith. I have faith that new medications and treatments will be developed. I have faith that more doctors will be hearing about our condition. I have faith that I can be part of this larger movement towards healing.

That of course does not mean that it is easy for me to get out of bed or to to do daily life activities. I went shopping with my mom and brother today and upon returning home made a quick dive for my bed. Damn was the knife sharp. Killing me. But I didn't get depressed about not being able to go out as I had hoped to. And I appreciated my friend's understanding. He told me to stay home so I did not have to feel that I let him down or disappointed him. It makes it easier when the people around me understand that I am trying my best. I am happy that though the pain was mad I stayed level-headed and just accepted that it would be another evening in my bedroom. It is okay. I can accept myself without judging myself or hating my body or pitying myself to tears. Equanimity is what I want in my life. Equanimity in the face of my own suffering.

I hope that I will be able to attend the jewelry classes that I signed up for. I better psyche myself up now for the possibility/probability of having to miss some classes. Remember Atara, don't get down on yourself. Try to listen to your body, accept, breathe....

I should be going to sleep cuz it is 3 in the morning. My circadian rhythms are so messed up and i am not helping them find peace and balance. I just wanted to write that I am happy that I have been talking more about my suicide attempt. I shared it on the facebook support group and i have told some new and dear friends about it too. I don't want it to be a secret. I want people to know that pudendal neuralgia can very easily lead to suicide. In fact one has to be very strong to not give in to the obsessive desire to die. Every day I remember that we are getting more help, that we are working towards getting doctors and surgeons involved in helping us. Every day, many times a day I remind myself that there are new interventions and new medications.

For those of you that are reading this and are struggling; the most important thing is to find a good doctor who understands the severity of this condition and wants to treat it. The pain has to be kept under control otherwise suicide becomes a very convincing route. I don't recommend it at all. We need every single one of you to voice this pain out loud and embodied. We need to create movement in the direction of healing.
And i have to go to bed. My sleep and my appetite are so messed up. And i am not helping at all. So, how can I help others if I am not helping myself?

Goodnight

And remember
suicide just is not the way
our way is hard
but we will have our victories

stay strong sisters
i am here for you

always praying

I want pictures
can't get myself to take them
to bring that red twisted wire to my room

feels like i can't do it alone
too heavy

i have plenty of time

but there are so many days when i feel that i am not moving forward

i move forward in my relationships, in my connections with people

that too is slow, though meaningful, deeply

things feel immovable

the weight of the pain always bearing down on me

clamping me down to now

the challenge of growing through the pain
my god, it is hard

try weaving meaning with a knife lodged between your legs

i weave meaning with a knife lodged between my legs!!!!!!!

Amazing!!!!

I must be a very talented acrobat.
In the world of souls i must be a brilliant and enlightened soul
Wouldn't i be deeply wise by now?

Huh, in this world i am disabled and enabled.
I see and know of a condition that others don't.
I speak and tell and prophesy

I will fight till the end!!!
I will uncover!!!
I will discover!!!

Damn,
the pain is tough now and i just don't feel like sticking opium up my butt or Valium up my vagina. If i smoke i won't sleep and i want to sleep.

Back too bed, to breathing deeply, deeply, deeply breathing...

Goodnight lovers
Goodnight friends

One day people will hear about this and we will get the help that we need and deserve. I swear that I am willing to suffer for this to happen.

I will fight!!!!!

And so must all of you.

Faith

Sometimes

i know

that

all of this

is my soul

yearning to grow

deeper

into the soul of the world

And though it hurts

And though i cannot make it go away

i know

that i can

help to make it heard

And so

i grow

into the soul of the world

and pray for all of us


angels
angels
by our side
come don't hide
angels
angels
by our side
with our wings flapping
and our hearts beating
we come to share
to tell
to scare

angels
angels
by our side
we come with faith
we come with fear
to teach to learn to heal

angels
angels
by your side

we come
we are here
we will not hide

Last night and today I felt an old familiar feeling
Something that I have not felt in a very long time
I wanted to hug the world
To hug it in all of its brokenness
To love it just the way it is

The pain

chains me down
and leaves me struggling my way back into bed
criticizing myself that on such a beautiful day I stay in bed
And i remember the walks
the walks of timeless suffering
trudging my way through the snow to physical therapy after a night of torture and torment
And i remember the walks with my father
every step as heavy as the guillotine and the noose

The sun shone
The trees were green
My father walked with me
I didn't want to see anyone
i knew that my eyes were empty
empty eyes

walking

into

timeless

suffering

so, today, i still stay in bed, resisting the fight to walk
i don't want to walk
i want to lay in bed and feel the pain and wish i was dead
and then when i get up and go out
i am revived from the dead
water fills my soul

And i know that i am alive and dead
that i walk and that i stay in bed
that i am still
struggling

Sometimes I am sure that I am giving in to the pain
That I am not fighting hard enough

I am not sure
I am just trying to survive
Life is so different then what it used to be

I just don't want to fight anymore
I want life

Come to me life
I have a heart full of hugs