Endo, Acupuncture and Leaning Into It

I've started acupuncture. So far, I've had two treatments and I'm not sure what to say about it except to say I'm encouraged and I like it very much. My accupuncturist is an old high school friend of mine and I think that helps -- I know she's not the "out there" type who will start ringing sterotypical chimes or chanting in some random way without warning. The description that I just gave is incredibly unfair to acupuncturists and proponents of Chinese medicine everywhere. Everywhere. I know this because of what I've experienced in my two go-rounds with the needles. Oriental medicine outdoes western medicine in its wholistic approach a thousand to one. Thank the heavens for humility and an authentic desire to listen.

Most amazing, incredible and, frankly, scary is my healer's insistence that I learn to lean into my pain. I call her my healer for I am not sure what else to call her, but I think that she would say that I must heal myself. She can administer my treatments, but I must do the work. But I don't want to call her my treater, and I don't want to call her my acupuncturist, and she is in a role beyond that of my friend when I am on her table so, for now, I shall call her my healer. I will assume that we both know what I mean and that you, my reader, do, too, even if I still have hepatic endometriosis at the end, if that ever comes. I very well might. I don't care. Centimeters of incremental improvement are enough, as is the incredible encouragement that comes from feeling heard and taken seriously.

But then there is the leaning into the pain. The pain. Yikes. When she says to lean into the pain, she means so much more than the hepatic endometriosis. There is no need to lean into that physical pain, it simply exists. Instead, she means, I am learning to mean, to lean into the direction that pain is meaning for me to take. What is that pain saying to me, to tell me about me? Where does it come from? Why is it here? What can it teach me? This pain as a gift -- a gift! -- to allow me to open to me, to my past, to the things that have sunk me below the surface of my life's water until I began to forget to breathe, held it all so tight that everything had nowhere to go except that one place where it had to live and learn to scream, my liver. Lean into that girl, lean into that.

Holy shit show. Holy shit.

Anger, sadness, grief, the sadness and hardness on myself. All the I didn't mean to's, should haves, could haves, would haves, twists and turns of fate.

Endometriosis is a bummer and a pain and a travesty to the hilt. I have also been telling people of late that it is an amazingly transcendent experience. Life's regularly scheduled programing -- the hurts that we all go through and the fun stuff, as well -- suddenly seem so much more manageable after these past few months (three months tomorrow) of getting through this. I find that when I laugh, I laugh harder. When I look forward, I really can hardly wait. I don't know how this story ends. I don't even know if it does. I surely hope this acupuncture is going to help. Lots of studies about acupuncture and endometriosis say it will. Yay.

I don't know how this story will end. But like I've said before, this is not it. Not for me. And whatever is your it, not for you either.

Hey you
Check out the view
Winding down the 1
Me and the miss
Sharin' bliss
And soakin' up the sun
And I feel like I've been resurrected
In my lifetime
I have never felt protected
And loved like I do
When I am here with you
Only You

And I know you've got something to believe in
Down deep inside your desperate soul
Hey friend don't you stop believin'
In the dreams that you had
The dreams that we all had
~Shawn Mullins, Beneath the Velvet Sun, 2000

Collective Loneliness

Sometimes the loneliness is too much. It's a strange thing to be lonely among people, caught between their presence and feelings of intense isolation, of being known and completly foreign to all. I imagine, too, that the loneliness is somehow collective; we all know it. Our skin is a boundary. It keeps you out. It holds me in. I must not spill. And so, I am here, inside of me, feeling my essence, but I cannot communicate to you, the other. For me this feeling resides like a sadness behind my ribcage, an ennui that both struggles and sighs.

Collective loneliness. This is the epitome of late modernity; where the social has fragmented and we are lost to one another, and so we seek new forms of identity to signify who we are, in the brands that we choose, the logos we sport, our consumerism run amok. It's becoming a song that I'm tired of singing, and I'm not even sure it is the point. Yet, we have the credit card bills to prove how hard we try. Collective loneliness. Trying to be like you, trying to still be me. But to articulate the ennui is impossible, right? To say, I am lost in the pain and the impossiblity of this task, this life, this emptiness, this possibility, this chance. I am immersed in love and foiled by loss, these opposites have met and I realize... I realize it is all going by me too fast. How did this happen? What will I do?

And yet, the current edition of Business Week is sitting next to me on my table as I write this, with the headline, What's a Friend Worth? The magazine, of course, means to establish how compaines will capitalize on Facebook and Linked In, as they did MySpace and Friendster before them since, ostensibly, there would be no point to the existence of these online sites without the possibility of making cash hand over fist. But I wonder -- in a world of collective loneliness, what's a friend worth? I feel so incubated all the time with this hepatic endometriosis, I want someone to know what I have, to understand what this is. No one really can because, well, people just don't get this. In the meantime, though, friends are worth a lot -- the humble ones at least, who just come and sit, and wait, and wonder, and say... It's going by too fast. We are immersed in loss and foiled by love. Let us risk this life to reach for some possibility, some chance.

Ennui. I swear to God that grief always comes with whispers of joy. I fucking hate that truth. And yet I humbly ascede to its promise. Even as I fucking hate it, too.

My first entry

I'm starting this blog because I've had it with what's being written out there about endometriosis on the web. Meaning: it's all lousy. Nobody seems to tell the truth about how much it sucks to have it; how much it hurts; how scary it is; or what kind of hell it wreaks in your life. I should know. I don't just have endometriosis. I've got it bad. Bad like in my liver. Hepatic endometriosis. Google it. Hardly anything will come back that you can make sense of. I've got it where you're supposed to get it, too. And I'm sick (literally) and sick (metaphorically) and tired of having it.

Doesn't much matter, though. Doesn't matter because this is it. I've got it, I'm gonna have it for the long haul. I had a massive liver resection done eight weeks ago that was supposed to set me straight but right now there's some doubt that it did. My monthly cycle rolled around and there it was again -- the pain that says, "Here I am, your dear old friend, Endo." Damn.

Everyone is telling me not to panic. I'm trying not to panic. Could still be post-operative pain, they say. After all, four big sections of your liver were removed. Doesn't explain though why the pain had resolved, the surgeon had cleared me from his service and then, Bam!, there's the pain again, same as before. What's a girl to do? I ebb and flow through the nauseaus anger; hunker down against the tears; make wry jokes that really aren't funny at all. It isn't funny. Phantom pain? My brain remembers that it used to hurt and so it has determined to keep on hurting even though nothing is there any more? Could it be? Seriously? Or is it still the real thing?

Phantom pain. That's the kicker, huh? Because those of you out there with just plain ol' regular endometriosis know what I'm talking about there. You don't have to have the super rare hepatic endo to know that it takes a whole lotta complaing to get people to believe that this stuff hurts and you need people to take you seriously. Man. I still have two ovaries that are no good to me, endo in other various spots, the super-fun opportunity to stack myself full of hormones. Yee-haw.

This is the truth about endometriosis. When I go on the web, most of what I find are people talking about it through the lens of infertility, or how there's still so much to hope for, or how to get over it, but I'm saying that a lot of us are still under it. My friend, my lovely friend, Kate, refers to situations that are way out of hand as "shit shows," and I've borrowed her phrase for this blog. Endometriosis is a total shit show. It's a shit show that ten or fifteen percent of women have a disease that doctors so freely admit they barely understand. Why doesn't this worry them more? I am befuddled and confused at their passivity. It's a shit show that women practically have to jump up and down on pogo sticks in medical waiting rooms before they're taken seriously about what's going on in terms of their pain and suffering . And it's a shit show that we're supposed to be brave against unbearable odds. I don't know if I'm ever going to get better and that's a shit show in and of itself. I'm really quite scared all of the time. What doesn't hurt physically hurts somewhere else, deep down inside. If you've got this disease, I bet you know what I mean.

If you're looking for answers or "try this's" well, then, this blog is not for you. I've noticed that out there on the Internet you've got lots of places to go for that. But if you just want to know you're not alone, stop by. I'll try to post.