a little chutzpah and a breath...

This is about bravery.
This is about transparency.
I am conquering my fears. I am breathing in. I am breathing out. I am laying down these words.

I have spoken to most of you, in one form or many, since my last posting.
I have been unsure about whether or not to post here, ever again.
Soon after my last post, we discovered that Jeff's ex-wife subscribes to and apparently follows this blog. She does not do so publicly, never comments or gives any indication that she does so... Or rather, she didn't give any indication of these facts until, during one of Jeff's Skype calls with Ethan after my last posting, she revealed that she knew about our pregnancy.

When I initially began writing here, my intention was to make these postings public, always. If any of these writings are ever to be published in a forum other then this one, then they will be part of the communal discourse, not just for the consumption of those of you whose words and actions I support, nurture, love. Not only in a discursive arena where the participants are of like minds or ideals, where basic compassion and respect are assumed and of course given unconditionally as they are amongst anyone who publicly follows my writing, my life as I, follow and support all of your lives and your creative endeavors and struggles. But for everyone.
I suppose that is still true. My intent is still the same. My determination is still the same.

I decided within days of my last posting that it doesn't matter to me that Jeff's ex knows about my pregnancy, it does matter to me what she does with that information and how she handles herself. The choices she makes about how she talks to Ethan about his being a big brother, whether or not she decides to honor Jeff and my wishes about how the pregnancy and then the resulting, amazing child are discussed are entirely hers and reflect solely on her. We all reap the consequences of our choices.We have so little actual knowledge. In the end, the choices we all make will impact each of us, Ethan, the new baby... All Jeff and I can do is share our enthusiasm for Ethan's new role, our trust in his ability to be a great big brother and to continue to be an essential part of our immediate and extended family. We can hope that those sentiments are shared. We can take responsibility for what we say but not for what anyone else says. We can know that we are only accountable for what we say and for interacting with Ethan and all children to be, with unconditional love, respect, honesty and total devotion to their self actualization in all the myriad possible forms that takes. We can only continue to be positive forces in those children's lives.
We cannot control anyone else's behavior, I know this. So, while Jeff's ex wife told Jeff that she was happy for us and glad that Ethan will have a sibling, I think the fact that she hasn't congratulated me although she has had the opportunity, the fact that she follows this blog which is really about me and my reflections on life, living in my body, trying to live with intention, passion, compassion, awareness, without ever commenting or giving any indication that she was doing so; Those facts say more about her true feelings, her intentions and honesty,her basic, intrinsic character then any trite 'congratulatory' message she could have delivered second hand.

What Jeff's ex decides to do with the knowledge of this pregnancy or anything else she might read here, is none of my business and will reflect entirely on her.
Am I happy that in reading this blog she has read intimate details, emotions and musings? No. But I respect my audience, whoever they may be and trust that as thinking adults we will all handle each other and our respective outputs with respect, love and trust. By following my writing here,privately orin full view of the world, you have all agreed to do that. Whoever you are.

So, this blog will remain 'public' and I will commit to continuing to be brave and transparent and honest. I will commit to not censoring or censuring myself preemptively, as dangerous as that feels. I will continue to honor, respect and love those of you who this blog is meant for, my loved ones, my community. We are scaffolding and building blocks. When one crumbles, we all fall apart.

I will continue to write with humor and light and brutal truth because I owe that to myself and all of you, whether you are strong enough to comment in the open, or not.

As much as being followed,unwittingly felt and still feels invasive,stalker-like, even, as a writer I am used to and in fact, welcome the idea that my writing, once out in the world, no longer belongs to me. That idea is freeing more then anything else, if the writing no longer belongs to me then the response to those words is no longer my responsibility but the responsibility of those of you who read it.
I am grateful to those of you who comment, email, message and call on the phone in response to my writings here and else where.

All I can do is commit to not giving up, to continuing to be direct and clear in my communication as a parent, both biological and not, as a partner to Jeff, as a writer... I have a responsibility to myself and all of you to not change the way I write or what I write about regardless of who may or may not read these words.

I will commit to using the words that are true. Always.

As thrilled and filled with excitement for this pregnancy, Jeff is even more so, about a hundred fold! That fact is an amazing comfort. Of course we are both thrilled that Ethan will have a sibling as we both have siblings who we adore beyond measure who are roughly the same number of years younger than us as this baby will be than Ethan, all of those possibilities lay before us and are so wonderful to contemplate.

For me, being pregnant has been and continues to be a journey, sometimes an arduous one. Certainly, the chronic pain piece is an unexpected and sometimes difficult factor. But it is part of who I am and has been a part of my adult life as long as I can remember. The pregnancy is just another added layer of my identity, as much a part of my life as being a parent and a partner already was, as difficult as outside influences sometimes make the embodiment of those identities. I have a responsibility to live out all of my identities here, to be vulnerable and true and take risks, in writing and in action.

I have a responsibility to be an activist and a truth-sayer and an advocate, for myself and many others- that is the job of the writer, the artist. Outside of knowledge of who reads this or doesn't and what they choose to do with what is written here, I am bound by passion and conviction, by belief in myself and devotion to my existing and growing family and community, to take a big breath in and take the leap.

a forty week sublet

Jeff and I found out we were pregnant on July 6th, 2010- the day before Ethan's 4th birthday. This never felt like a coincidence to me.
It has been a bumpy ride. I had (and still have to varying degrees) a conflation of pregnancy related 'ailments' which mean I could quite easily beat down a horde of 12 year old boys in a belching contest.
Two weeks before I found out I was pregnant, I began another odyssey of sorts... I found that even my amazingly high pain threshold was no match for the pain I was feeling or my increasingly worrying lack of mobility. This discovery lead me to an orthopedist, an acupuncturist, a physical therapist, an orthotics and prosthetics specialist and a bevy of orthopedic surgeons! Oh my!
The rub on that side of the story is this; I need 2 major orthopedic surgeries on my left foot/ankle/Achilles tendon and of course; won't be having them any time soon because my body is (quite literally) otherwise occupied at the moment!
Last week I was talking about the pregnancy with Jeff and came up with this gem- "Its like my body is an apartment and I'm the benevolent but rather unskilled landlady!" The tenants are fine, they have all the basic necessities covered...The outside of the building, however, is falling apart!
I don't think that feeling is unique to me, I'm sure in fact, that many pregnant women feel that way for some if not all of their pregnancy; overjoyed by the fact that their family is expanding, petrified and appalled at how little they actually feel like themselves or how little how they feel matters to anyone else, save perhaps partners and immediate family.
I've been shocked by some of the reactions I've gotten from friends, medical workers, the public and sadly, not so shocked, sometimes in the same moment.
There's the close local friend who worried that I would have trouble negotiating Portland sidewalks with a stroller or the prenatal nurse who suggested a particular OB because she was "tolerant"... Or the in laws who were concerned about "birth defects" and wanted to know if Cerebral Palsy was genetic.
I think the answer to all of those inquiries is no. Just no. Because while I know that it is, at least in part, my responsibility to educate, elucidate, assuage fears, right now I just don't have the time.
I'm too busy dealing with my own conflicting emotions. I can't tell you how overjoyed I was when all of the genetic tests came back "little to no risk" or, how simultaneously disgusted I was with my reaction.
We don't know the baby's sex yet and won't know anything about gender for quite a few years, I'm determined to raise this child in as gender-free an environment as possible and I'm quite vocal on the subject. Why is it so difficult for me to advocate just as vociferously for my right to raise this child in an environment that with not laden with ableist judgments or expectations.
I have climbed mountains in several countries, jumped out of a plane over the Sahara desert, gone sand boarding in the Namib, catapulted myself onto moving passenger trains with 6 foot platforms in Eastern Europe, as a post-coffee ritual. I have worn impractical, ridiculous shoes in all kinds of weather, while treading over cobblestones.
I can negotiate a city street with a stroller, I can explain to anyone and everyone the difference between condition and disease, that there is no such thing as a birth defect, that we are all different and that each of us gets to decide how to identify and what our particular set of skills and weaknesses, likes and dislikes are, over I can welcome this pregnancy as yet another in an ongoing chain of adventures.
I can welcome this child into the world without any deeper expectation then that they be who they are. I can provide them that space.

Remembering Alida

I woke up suddenly from a dream of running through an enormous green field, at 2:34 this morning. A dream of being chased or chasing, of trying to read a scrap of paper that floated always out of reach but seemed utterly, entirely essential.
As is often the wont of my insomniac self, I indulged in a terrible habit, one that causes particular damage when the goal should be, getting back to sleep, I checked my email.
What I found was a message from an old friend about the sudden passing from a rare and incredibly quick cancer of another dear old friend.

I haven't seen or heard from or of Alida in nearly 20 years. I have often wondered where her path lead her and equally as often had the feeling that somehow our paths were running parallel to each other.

Alida was tall, like some sort of amazingly majestic yet incredibly gentle tree, completely comfortable with just swaying, just being.
I remember finding it funny, ironic even, at 7 years old that we seemed to be polar opposites. Alida, tall, willowy, blond and ethereal. Me, close to the ground and dark and too old for my age, both of us so knowledgeable, so certain of ourselves, so powerful- always.

Most of what we did together was lie aimlessly in the green meadow behind the childcare center that my mother co-directed. We got lost, in our heads, in our own imaginary worlds where Alida would grow up to be a mermaid and I would grow up to be a foreign correspondent. Even then, our goals seemed somehow opposite and yet complimentary.
Alida had the most amazing way of seeing things and making them real. I had a way of talking, acting and writing them out.

I lost touch with Alida in my early teens but have now learned that we both lived all over the world, loved fiercely, even when that love wasn't deserved or wasn't the smartest choice. I know now that just as we planned, we lived for the sake of living, just like we knew we would at 7. That we both followed our dreams and our hearts, disjointed, convoluted, circuitous and necessary.
I know now that we lived as we wanted to live, with our complete selves, always.
I could say that I regret the years in between that I missed out on knowing Alida on a daily basis.
I will say that somehow, from very early on I always knew her and am proud to have had the opportunity, proud to know that she continued to live and love in a way that was always true to who she was. Proud that knowing her was part of allowing me to do the same in my own way.
i know that, just as I have for nearly 20 years, I will think of her nearly daily and miss her always.

recognition

Early last Thursday morning, I got on the bus in time to make my regular 9 am appointment. The bust was not too crowded not empty, nothing either eventful or, non, happening- except this:
2 stops after mine at a 8:12 am, I noticed a man I'd never seen before which, in Portland, if you ride the same bus on the same day at the same time, habitually- is rare.
At first glance, there was nothing unusual, nothing particularly attractive or not, about this man, until that is I watch him make his way from the payment kiosk to sit in one of the only remaining seats left on the bus, directly across from me.
I noticed him because it was like looking in the mirror. I have never in my life seen someone with such an identical way of moving to mine.
At first the realization shook me and I looked away, afraid that I had been staring and aware that while I may be having an identity epiphany, there's no reason that this guy, who hadn't actually seen me move, should or would be having a similar moment of self awareness and connection.
For the next 10 minutes, as the bus made its way to my connection point I thought about why this moment of visual recognition had struck me so deeply and I studied him, in what I hoped was an unobtrusive way.
I notice that like me, he was wearing a wedding ring and I wondered how many nights he had spent wondering whether any of those signifiers of "normality" would ever be his to claim? As I have. I wondered too, if he then went on to self interrogation on the concept of normality and why it is so important, even or sometimes especially who at first because it happens to us and then late, because we rebel against the very existence of "normal"; live outside of it.
I wondered how he felt about the ambiguity of his condition, the state of being "disabled but not quite enough" or "just shy of able"- whatever either of those statements mean, and they mean different things on different days...
All of this happened in ten minutes.
As I got up to leave the bus and make my connection, I passed him and smiled. He winked at me and said, "Its not everyday you see mirror image, is it?"
No. I wanted to skip my appointment, to stay on the bus to the end of the line and ask him all of those questions and more, but I didn't. I wanted to tell him how many negative experiences I've had on all manner of public transportation, to ask him if people often tell him where they think I should sit, as they do me, and then get insulted and abusive when I don't take their advice?
I also wanted to thank him for giving me what might be my first entirely positive public transit experience and to tell him that someday, if this blog does grow into another form, it may be just that- a series of anecdotes about being disabled in public- afterall, there is no greater equalizer, no space less private or shielded then an early morning bus ride.
Perhaps I will get that chance another day.

Gimping at the mouth...

This weekend, while Jeff and I were in Vegas, during one of the few times we were in the gaming part of a casino, as a cocktail waitress walked by us, in all of her curvy beauty, Jeff, trying to give me a compliment said, "You could totally do that, you absolutely have the body and the beauty, I'm not sure how they would feel about the walk though..."
Immediately after saying this, Jeff realized what he had said and how his attempt at being complimentary had totally backfired! My initial response was one of indignation and frustration, not so much at Jeff but at the millions of times I have heard similar comments, sometimes from people who love me and sometimes from strangers who fire these supposed witticisms at me with either malice or complete ignorance.
I explained to Jeff how hurtful that was, in general and especially coming from my husband who I love so deeply and unconditionally. I said, "...it would be illegal for them to not hire me based on the walk, though they would probably just come up with some other reason why I wouldn't be a good fit and I wouldn't want to be in that kind of service position anyway, one, because I know how hard those women work and what kind of crap they put up with AND because I am not so good at carrying drinks."
Jeff was totally apologetic and understood why my initial response was fear, I have dated, flirted with, been flirted with by, so many people who have made claims of understanding my inner and outer gimp and have made similar, though of course, more hurtful, statements. It was sort of like the good friend who once explained to her young children that. "Aviva's body can't do everything she wants it to and you should both consider yourselves lucky that you have bodies that will do what you want..." When her children wanted me to climb the ladder to check out their attic with them. This before asking me what my limits were (none really- I think if I can handle climbing mount Kilimanjaro and working out enough that I have lost nearly 50 pounds since the second week of October, I can handle an attic ladder!) The thing is, everyone, and I mean everyone has limitations, physical skills and weaknesses, just because mine have a name does not make them public property. As I always say, if you want to know what I can or am interested in doing, ask me! We all know what they say about assumptions.
In the end Jeff and I reached an understanding and are no less in love with each other then we ever have been. It was a good reminder for both of us. For me, because I forget sometimes that even those who love me the most haven't lived in my walk, as it were, and there is a learning curve. I owe it to those I love to be gentle and explain why those comments are unacceptable. I also owe it to myself and the world to be clear and vocal and explain why those comments and the views of differently abled people they encourage and support, are unacceptable.

moving while basking in the light gimptastic

Big news! Jeff and I are moving! Out of Beaverton, away from the ghosts, and there are many, of his former wreck of a marriage, into a blissful place of being very very much in love, more every day and a place that is ours to create, love, laugh and build a family and a community in.
Much of the packing, organizing, hauling, pushing, pulling has been my job. As someone who has moved countless times across many oceans, this is no new feat for me!
While the moving is old hat to me, doing it with Jeff, my absolute love, is a new thing. Absolutely, having someone else to go through the move with has been wonderful and it has been a testament to our love that Jeff is able to accept and learn and ask questions. Specifically about what my skills and weakness are in relation to the move.
I can pack like a cyclone, lift boxes that weigh more then I do, load a truck, unload a truck and organize beyond belief. Basically, as I told Jeff the other day, while we were preparing for the first Uhaul endeavor, The only thing I'm not good at is walking down stairs backwards while carrying large pieces of furniture or heavy boxes or negotiating stairs at all if I'm carrying something I don't have a good grip on or, that eclipses my view of my feet! I think those last limitations have more to do with being 5 feet tall then being disabled!
One of the first things that made me know that Jeff could be the one happened about 15 minutes into our first date... Typically, my limp and it's origins and ramifications are not something I discuss in prelude to dating or on first dates, unless of course questions are asked. And those of you who share this view with me or, have spent any time with me, know that there are "good" questions and "not so good" questions, those I will answer and those that tell me this isn't going to work, this has always applied to dating as well as work and social situations.
So, back to our story! On our first date which was virtually "blind", after getting in the car and devouring each other for a few minutes, we decided that instead of going to dinner we would pick up food and bring it back to my house, the food is unimportant as it didn't get eaten until the next day; What is important is that as we crossed the parking lot holding hands and not being able to keep our hands to ourselves, Jeff asked, "Will you tell me about the limp?"
Yes. No judgement, just a question and not a "what's with the walk, what's wrong with you, what happened? kind of question!
So I gave him an honest answer. I was 3 and a half months early, have CP, was born this way, it's not progressive, moderately painful, well, if you have the world's highest pain threshold, as I do...
"Ok" he said, "Let's go home..."!
I knew then, I know more every day, that with Jeff we are both able to live our own truths, to be completely honest with each other and in being ourselves. We acknowledge that everyone has abilities and limitations, skills and weaknesses... How you move, speak, negotiate the world has less then less to do with making real connections and honoring yourself and your partner.
This move and everything that lead up to it, the limbo of waiting for the house to sell, the difficulty of waiting for Jeff's divorce to be completed, everything we have been through together and the way we continue to laugh and love and support each other, through everything in acknowledgement of who we are and what we are good at and not so good at, tells me that my first instincts about Jeff and about us were absolutely right... Now back to the packing. May you all find love and light in your lives and continue to honor your truths and your loves..

Inviting Desire, Callback Audition Piece!

So, for those of you keeping track of these things, I've been invited to a callback audition for "Inviting Desire", the piece I auditioned for a few weeks back that explores women's sexuality, erotic personae and fantasy, created by a former Royal Academy of Dramatic Arts colleague of mine. At the initial audition I was encouraged to really push limits in terms of erotica and taking risks. I know that the creator and director has made some changes to her vision about this year's rendition of the show and is focusing on increasing diversity amongst the cast and their expressed experience.
The piece I plan to use is pure erotic fantasy and comes from a longer, either written or performance piece, called, "Bad leg, Nice Ass" about disabled women's sexual expression, experience, fantasy, reality and personae, that I've been working on, on paper and in my head for years.
I will include the piece here, because I know that you are all adults and can make choices about what kind of exposure you want to these kind of subjects, a warning- the piece I am performing at the callback audition is pure fantasy and fits the critique I was given at the initial audition to really push the limits and take risks, it is definitely racy and honest! The language is very explicit and meant for adults. If you think that you will be offended by the language and content, feel free to stop reading now.
I find it important to include the audition piece here as, having the courage to do so is the first step in my being able to perform it tomorrow evening, quite a risk indeed. It is important that I share all aspects of this process with you, my readers, my equals, my trusted community and confidants.

Of course I wish that you were here right now. I want to put your cock in my mouth, I want to make you come, I want to touch you everywhere, I want to kiss you everywhere, I want your tongue on my clit, I want to taste you, I want to leave marks...I want you to fuck me, I want you to fill me up, I want you to tease me, I want to not know what you will do to me next, I want to hold you...

I dreamt of you last night. I dreamt that we went to dinner somewhere that was far away and the whole time you were driving my hands were on your cock, my fingers lightly grazing the head, my whole hand sliding up and down on the shaft. I dreamt that finally, we had to pull over so I could put my you in my mouth, tease you with my tongue, make you explode with pleasure.
In my dream you had told what to wear, that dress from the other night with nothing underneath. At dinner you put your hand on my thigh, and slowly force my legs open so my pussy is yours under the table, your fingers teasing my clit, you are pumping in and out with your whole hand now, I am so wet I can't move, afraid someone will notice, not really caring anymore if they do but every time I make a sound you threaten to stop fucking me with your fingers. Finally, I come, violently, silently, so that my explosion is only for you, so that no one else can tell what is happening....

of course, I woke myself up, my pussy soaking wet and throbbing missing you, missing you inside of me, coming...
And now I've done it to myself again.
until tomorrow, I adore you...