Are You Perfect?

I was driving home with my boy today when a strange question popped into my mind, a question that I think has been percolating just beneath the surface of my gray matter for years. I asked it of him and now I'm asking it of you: What do you imagine is the difference between being a perfectionist and trying to be perfect? Do you think there is one?

I do.

For most of my life people have been telling me that I'm such a terrible perfectionist. (Side note: that's such a strange phrase, "terrible perfectionist." Does it mean that one sucks at her perfectionism? Or, does it mean that being a perfectionist is terrible? Or both? End note.) Anyhow, people have been telling me that I'm this terrible perfectionist. My response has always been to look at these people askance. I am not, by any stretch of the imagination, a perfectionist.

What I am is a mess. An utter, fallible, complete and total mess. I can barely get my socks to match everyday.

At the same time, nonetheless, I am trying to keep this world, my world, from falling apart. And in this respect, I am trying so very hard to be perfect. I am clenched and tightened and holding my breath. I want so badly for everyone to be OK and so, if you need for me to do it so that you can be OK, I will do it. If you don't know what it is, I will set to finding it out. I will worry and I will weary and I will try. I will keep on going and I will never mind because I will never notice. Just you don't fall apart.

I will be perfect if you will promise to be OK. I will keep this all together.

I imagine you sitting there, reading this, eyes bugging out, especially those of you who know exactly who I am, even as I poorly mask my identity, thinking, whoa. This is not good.

And it's not. If we were sitting here together I'd make a wry, pithy joke and try to let us off the hook. But here's the thing: I think maybe I'm just extreme in my trying to be perfect. We're all trying to control this life, this shit. We're all trying to find a way to know that it's all just Chicken Little, so even though it might seem like the sky is falling, and even though all the evidence points in the direction that the sky is in fact falling, it's just a big trick and everything is really OK.

My method is trying really hard not to make any sudden moves, taking responsibility for things that never were mine to own in the first place, and all the while trying to be chill, an act that nobody buys because I'm wound as tight as a new mattress from Sears. Other folks got their ways -- and this laundry list is too long rehearsed. Shopping. Drinking. Eating. Whatever. I judge ye not.

I'm just saying to you this: the sky is falling. I don't know how fast. If it seems like you can't get that corner straight, I'm guessing you can't. I'm sorry it hurts. And I'm going to pass on what my boy said to me.

He said, "You try to be perfect because you want to feel safe." That's right.

It's hard to feel safe when the sky is falling. Keep breathing. I don't know much, but I know that helps. And I'm learning, day by day, that somehow in the midst of too damn much, we're finding a way to be OK.

Fear and Reprieve

When I was in high school, I played basketball. Lots and lots of basketball. It was hell. In elementary school and junior high school it had been great -- and egotistical though it may sound, I hadn't been three-quarters bad -- but in high school it all went away. My stomach still sinks when I think about it and, shoulders shrugging, I'd still like to know what went wrong. Somewhere inside I still feel bummed. I had these plans, see. These plans to go to college on a real scholarship, to make the varsity my sophomore year, to be the point guard, to play.

But it didn't turn out like that. Lots of my life feels that way when I think of it. I watched a lot of the movie that came out at Christmas a few years ago, The Polar Express, with tears in my eyes, because I understood what the little boy meant when he said, "Christmas just doesn't work out for me." I feel that way. Life just doesn't work out for me.

Starting, I suppose, with basketball. I guess the problem must have been me (am I not supposed to say that?), maybe I wasn't so good anymore (it seems like I was, though). Perhaps the chemistry with the first coach, who left after my sophomore year to be an assistant at a big college, was a little bit off? Certainly I had no chemistry with the coach who came after her, who made me feel terrible about me and who I still bitterly wage war with, deep in my heart, far back in the lost places of my young girl's mind.

Some wounds seem like they shouldn't matter as much as they do. For me it's this basketball thing, but only in part. Only in part because I'm starting to think that life doesn't work out all that well for anyone. We all seem so sure it's working out well for the other guy, but the more I talk to him, the more he keeps telling me how great I seem to have it, or if not me, then you. I'd be a pretty sad sack of potatoes if I thought I hoed this row alone. It'd also be a pretty good farmer's market if basketball were my only potato, or if that one coach were my only foe. But I've blundered more than that, and in my mind I've got my finger in quite a few faces. Plus, let's don't forget I'm battling some actual, tangible enemies. Endometriosis, I'm talking to you.

Back to basketball. I remember there was one game when that coach came down extra-hard on me. Told me on the way to the locker room at half-time that he couldn't see any reason why he should let me play anymore. We were playing one of the less-than teams in our league, and we were not playing them very well. But I was trying as hard as I could. I've never been the sort of person who responded well to more pressure. I never, ever need more pressure. Looking back, that was part of the chemistry disconnect. If I ever would have thought for one second that he really believed I could do it, I'm sure we both would have been surprised by the results. But I always knew that he expected me to fail. It was a crushing burden to bear.

I really have no idea what happened in that game, if we won or if we lost or how much I played in the second half. But something happened that night for which I will always be grateful. I got home and it was winter in Idaho, and I put on my sweats, and my headphones with my old Walkman tapeplayer, and I went out to run. It was a black, black night. I don't know if my parents were home or if they even knew I left. I just remember that I went out to run.

I ran so hard, and for so long, and I remember that there was a point at which -- for just a moment -- I didn't feel scared. I didn't care. I didn't feel the pressure. I knew it didn't matter. I just ran. I lived in the same house for nearly every day of my childhood, and so every one of those streets was familiar. It was dark, but I wasn't lost. I realized that night that I know how to be alone without being lonely. I realized that things can be so hard, but you can still be there. That's it. You're still there.

For just a few minutes I was with me and I wasn't scared.

There are so many reasons to be afraid. It is good to be afraid. It means you understand what you're up against. But it is good to know that you can be counted down and out; you can, in fact, be utterly powerless, and still find your way in a cold, black night. Nothing got better after that run, not for a long, long time. But that run was still a good thing.

It is good to be afraid. Good, too, are moments of reprieve, even when they come in the dark.

Both at Once

Haven't posted in awhile. Can't say why. Just haven't quite been up to it. Things get hard. Words fail. Finally I write.

I've been talking to my husband a lot lately about how life can be "both at once," both good and bad, yin and yang, shitty and wonderful, and realizing that it's a really hard concept to wrap your mind around. I guess I'm lucky because it's not so hard for me. I laugh as I write that because I wonder if I've had so much shitty that I've always been scrounging around for the good, like little Charlie in the Chocolate Factory, insisting against all of the odds that, goddamnit, I will find the golden wrapper, I will, I will, I will... Even when there's no reason to believe it's possible, I'm somehow sure that if I just hang in long there enough, Grandpa will get outta that bed and come with me to the rivers of milky-sugary-wonderfully-chocolaty-brown. What's so great about that story, of course, is that when Charlie does find the golden wrapper, he finds it because first he finds the money -- the money to buy the chocolate bar. And where does he find that money? In the gutter.

The beginning of the trip to the chocolate factory started in the gutter. That's from the book. Nerdy kids like me always got the real story out of the book. I think in the movie he might get the chocolate bar at his birthday party. His family had saved and scrounged to get it for him. But in the real story, in -- gasp! -- the book -- he gets the money in the gutter. And he goes in the store, and he buys the candy, and he opens the bar, and he sees the golden wrapper, and pandemonium breaks loose, and he has to flee for his life. Poor little pauper Charlie goes from gutter to glory just like that. Both at once.

And then in the end Willy Wonka gives him the factory. The whole damn thing.

What do we get? I get this endo on my liver that doesn't go away, even after that awful surgery that left me living on the line between what felt possible and impossible for months. I got some other stuff that I don't write about but that busts me down to my knees way worse than any ol' abnormal growths on my abdominal organs. I got insecurities that I can't even deal with. I got questions that don't got answers. I got this loneliness deep inside that wells up in my throat and makes me think that a person has never felt more vapid than me. I got mistakes, regrets, losses, painful losses. I got things I understand that I wish I never learned.

But I got this boy who keeps coming home everyday. He drives me crazy, you know. He does. When I tell him that it's both at once, that we're just like Charlie, he tells me that all I see are daisies. It's absurd. Nobody, and I mean nobody, but that guy thinks I'm an optimist. I do like those daisies, though. They're part of the both at once, and so is he. I'm running better and faster everyday. I'm learning not to let my heart beat so hard and so fast, and that makes everything better. I'm writing again. I'm reading more. The world is full of books and, holy shit, it's so much better than filling my eyes up with all of that TV. Music, glorious music. My few friends who showed up when I was in the hospital, showed up when I came home, showed up a month later when it still hurt, showed up last week when I felt discouraged again. October baseball.

Fall, sweet fall, when summer heat fades away.

Both at once.

In the academic life, especially in the social sciences, we talk about the Enlightenment, and those white dudes who wrote about Progress, and the forward march of society, and how gosh darnit things are getting better all the time. And after we learn about that, we learn about how to critique that, and it's fun. We ask the simple question: When we speak of this progress, about whom are we speaking? Who's reaping the benefit? In academic circles the answer usually is those same white, property-owning dudes who seem to see everything getting better all the time. But I suspect that at the end of the day even their hearts break. I know plenty of them who've gotten sad a time or two. (Plenty of non-sequiturs could get launched here, that would take me off track, that even I could launch at myself. Let's don't.) We don't live on number lines where we walk forward for a bit and then get thrown back because we've been cheated. This is not a game of input output. God knows we try so hard. I try so hard. I get so angry because it isn't enough.

It isn't enough, because we're just little people in a really big world, and the really big world is smarter and faster and slyer than us all. The world fucking cheats, too. Denying that just makes you annoying. It's doubly annoying if you're not a cheater. However.

We live both at once.

It's true that some people seem like they have a lot more glory than gutter. Lucky bastards. Hard not to hope they trip.

Hey, what can I say? I'm still struggling with both at once and feeling safe and realizing that I can't always do more than I'm doing.

Bleep, bleep

I've been doing something on my runs this week that I hate doing: I've been wearing a heart rate monitor. I hate doing it because it forces me to calm the fuck down. I normally run hells bells, all out, demanding that I hit a pace that's at least under nine minutes a mile, usually much closer to eight.

Eight minute miles are about what I used to average during high school cross country practices. Probably a little bit less, but not a whole lot. High school was a long time ago. Like, before endometriosis. Hip pain. Graduate School. Insomnia. Age 30. Plus.

Just saying. Eight minute miles are pretty fast for me now, but I push pretty hard for them. On training runs.

Until I strap on the heart rate monitor, that is, or I should say I'm starting to think. Heart rate monitors make me realize that running can bring out the bananas in me. At least that's what all the bleeping seems to imply. I strap the thing on and the next thing I know the damn thing is shouting out absurdities like 171 beats per minute, 172, 176, 178, 181, bleep, bleep, BLEEP. Is this thing even working right?

The first time I used it this week, I was on a treadmill. I warmed up at a 10 minute pace, no problem, 138 beats per minute. Went up to 6.2, 143 beats per minute. Up to 6.5, 150 beats per minute (that's about a 9:13 pace). I should have held there, but I was thinking -- I'm not kidding -- I bet my heart rate won't even increase if I press my pace up to 7.0 (within a minute I was at 163). Now, here's where all rationality went hasta la vista, baby. I actually had the following conversation with myself: "I know why my heart is beating this hard. Since I'm not getting tired, my heart is over-working itself trying to go this slow. I better up the pace."

I amped the treadmill up to 7.5 (an 8-minute mile). My legs were whisking along beneath me, proud and strong, and I knew that somewhere out there Paula Radcliff herself was aware of my graceful prowess. I made sure to relax, concentrated on my form, took several deep cleansing breaths just to make sure I was as calm as possible and looked down at my watch.

192.

WHAT? I'm not even breathing hard, I thought to myself. So I looked down again, legs still galloping beneath me, in their seemingly effortless stride. 194.

Fine. Whatever. I pushed the buttons down, first back to 7.0. This only got my heart rate down to 176, still in the watch's "emergency" red zone. Also, the treadmill at my gym automatically syncs with my heart rate monitor, so it had started warning me, too. Giant red letters were scrolling across the machine's screen, "Urgent! You are exercising too hard! Reduce effort immediately!" It was awful.

I turned the pace down to 6.5. Now even this was too hard and only brought my heart rate down to 168, 69, 68, 69. The watch continued to bleep, the treadmill continued to lecture. I was completely dismayed. I still didn't feel tired. I was still not even breathing hard.

Down to 6.4. This got my heart rate down to 160, which at least settled down the treadmill, but the watch was still unhappy. (I had programmed it to encourage me to hold a pace between 147 and 157 beats per minute.) I couldn't get down to 157 at 6.4, a lousy 9:22 per mile. I punched the level down one more time, to 6.3. I finally achieved a rate of 155 beats per minute, running a pace of 9:31.

9:31! I'm embarrassed just to write it down. That's barely even anything. Who runs 9:31?

Well, me, I guess. Because, the thing is, I ran that pace, for the most part (I did allow myself a pick up for the last one minute), and the run actually wasn't awful for once lately. I didn't need to collapse at the end. I still had something left for the pick up at the end, when I could run hells bells, and most runners know that pick ups are really important, because they teach you to finish strong, run hard, go all out when you're tired.

But most important, I held the pace. I just ran. I wasn't working so damn hard, I was just lost in the running, not doing more than I really can do. God, that's so how I live my life, constantly doing more than I really can do, demanding that I turn up the pace, no matter how damaged my insides are, there has got to be a faster pace that I can find a way to hold. Truth be told, I've been running more on treadmills lately, and I think it's because I haven't wanted to admit that I can't run as fast on the open roads anymore if the pace is left to me, and the treadmill can force me to do it. The belt can make me go, and before the heartrate monitor, I would not turn it down. I would run those nearly 8-minute miles, no matter how my liver hurt, no matter how my diaphragm begged, no matter how my pelvis ached. I would do it, because I used to be able to, and so if I can't do it now, it means that I am losing.

Losing what? I don't even know. I know that running used to be smooth and easy for me, something that I just did, not to prove something, but because it existed, and I existed in it. I wish sometimes that I would never have found out that I was relatively good at it, because sometimes in finding out that we're good at things, all the grace and beauty gets sucked out. But I did find out and, anyway, that was a long time ago.

Now maybe I'm not so good anymore. This makes me sad. I identify strongly in being able to run farther and faster than can lots of other folks. But you know what? My arrogance in that ignores the fact that there have always been lots of folks who could run farther and faster than me, that I've always been getting older, and that I've always been trying to outrun so many things that were bound to catch up with me at some point anyway. Now I have to face the truth. My liver grows this stuff it shouldn't grow and it grows it right next to my diaphragm and it hurts when I run too hard. I had a really big surgery not so long ago. Maybe my heart is saying, we're sad, me and you, and we need to go slow. We're not like we were before this happened. We have to live in the after. We have to hear the bleep.

There were bleeps in the hospital, too. Bleeps when I pressed the button for more pain medicine. Bleeps when my blood pressure dropped too low. Bleeps when we called the nurse because the pain was so intense I was hyperventilating. Bleeps for things I can't even remember anymore.

But even though I know all this, I'm not so good at slowing down. Not in my running, and not in my life. I want this to be over. I want to run like I did when I was fifteen. But I have to admit that the running feels better when I'm not pressing so damn hard. Everything feels better that way. I feel so stuck.

I want this to be over, but that's not a realistic want. Like I've said before, this is something I'm under, and I'm gonna be under it for quite awhile yet. There's not a pithy wrap-up or an easy lesson. I can't promise I'll never go hells bells again. I know that I will, maybe even tomorrow. But at least I know when I do, there'll be a bleep-bleep going off somewhere deep in my head.

Or maybe even on my wrist.

On Kindness

I've been thinking a lot lately about kindness -- the kindness of strangers, the kindness of friends, the kindnesses we trust and the ones that we don't. I believe that being kind is the most honorable of traits and yet its presence is so quiet and unassuming that it often gets taken for granted. We forget that the counterpart to kindness is sacrifice because kindness requires submission: Submission to the other, to the moment, to the loss of the material goods you really intended to keep for yourself.

To be kind is not the same thing as to be nice. Many people are nice but very few are truly kind. Niceness wears thin and comes with limits. Kindness sits with you in the dark, cold night when you shiver and hate and demand to be left alone. Kindness finds a way to let you be, but neither does it walk away, because your troubles are not too much for kindness. Kindness also tells the truth when your wallowing wears thin, but does so in a way that continues to be about you, your needs, your life, your hurt, your potential and your possibility. Kindness says, get up, let's go inside, let's try a new space for awhile. Kindness offers chocolate chip cookies underneath an old afghan on a worn-in sofa. Kindness fits. Kindness waits. Kindness hopes on your behalf.

Kindness. Sometimes it hurts. At least sometimes it hurts me. It drudges up the times that I tried to trust in its presence and pull that afghan up underneath my chin, only to discover the blanket was fraying in my fingers and the cookies were all burned. To recieve kindness, one must flirt with the possibility of disappointment, because nobody, no matter how kind, can come through on every occassion. This sucks. And to be human in this wild world is to desire distance from the chance of getting let down... again.

I just don't want to be disappointed again.

It hurts so much. To know and to receive authentic kindness is to risk a great deal because it means walking into the kitchen, taking the cookies, sitting down on the sofa and knowing -- damn it, knowing! -- that hurt is going to follow. The only question is, how big is the hurt going to be? I think this is why so many of us enjoy so much accounts of the so-called kindnesses of strangers, anonymous gestures of incredible munificence that come without explanation and leave us speechless in their plentitude. We aren't just mystified and grateful for the magnitude of the gift. No. I postulate that we are also relieved. We are relieved because the gift is really free, unfettered of the requirement of reciprocation or, often worse, the humility that can come in knowing who helped you and not being sure of whether you're worthy or why why they did it in the first place. Instead, the question of, "Why me?" goes unanswered, as do the needs for direct payback or syruppy, sycophantic thank yous.

Known kindness improperly executed excoriates its recipient. An act meant to help can cause immeasurable harm. This is the unseen but utterly felt dialectic. This is the rub with kindness, and this, I think, is why kindness is so difficult to trust. Kindness can be very demanding. How do I know, if I take your cookie, that you won't make me feel forever indebted? How do I know that you're giving me your best and not just your crummy leftovers? How do I know that you will receive my pain in dignity and hold it with grace? How do I decide not to just do it myself? My way might be imperfect, but at least I'll be free to cast blame. If you offer me your kindness, and I end up getting hurt, will I have to hold the hurt, because you meant it in your kindness? No thanks.

And yet we are stuck.

We are stuck because of the loneliness. Because it hurts so much to never depend on anybody. Because it makes us so sad. Because even though we fail each other so readily, most of us don't mean to, at least not most of the time.

And maybe because in my life nothing has felt quite so good as a second chance.

Because I've been learning lately that I suck at making it on my own. Every time I get close to hauling my own ass up to the top of the mountain, the endo does its thing and I'm back on the Vicodin. Again. On the Vicodin (I swear it isn't just an hallucination) I realize I got boosted up the mountain anyway. And I need a cookie. And a couch. And a blanket. And somebody to say, trust me, I'll sit with you, you're ok, let's wallow for a bit.

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.

Tragic Optimism

I haven't posted for awhile, and I'm not sure why. It's been a strange few weeks. In some senses I feel stronger -- physically, emotionally, maybe even spiritually. But in other ways I feel more hollow than ever. I recently read the book, Man's Search for Meaning, by Viktor Frankl, and it was good. Good in the sense that it has helped me to conceptualize anew some of my thoughts about my journey. Frankl's premise is that one finds purpose in life through finding meaning, and most of us find meaning in one of three ways: work, love, or suffering. In each case, it is up to us to assign the meaning -- in essence, to find the way out. It is a very future oriented approach, especially with regard to suffering. You hold the shards of glass in your hands, and you decide what to make with them now.

At first it is a very empowering idea. Frankl writes as a survivor of four concentration camps, and his account of his suffering is very profound and impossible to argue with. I would not trade places with him. His depth of trauma adds ineffable validity to his book and his brain child, "logotherapy," logo" from the Greek for "meaning." But the reader has to do the work to find the meaning in Frankl's suffering. He doesn't do that within the pages of his tome. He writes his story from a psychoanalytic point of view, and then he writes of his therapeutic approach. As a reader I sensed his forgiving and humble soul, and I admired him for that. But there is no, "why?" there. Included at the back of the book is the written text of a lecture he gave which is titled, "Tragic Optimism." The words tragic optimism resonate. He rejects the philosophical schools (of which I have studied much) of nihilism and insists that life must have meaning. But what is the meaning of 6 million Jews dead while he survived? He doesn't even begin to answer. He acknowledges that his survival was due in marginal part to his optimism and will, but much more so to luck. He urges that a grain of hopeful sand in a mountain despair is enough. I am not so sure.

Tragic Optimism. What a fucking cool two words. I wish that I had been the one to have written that. I feel it. I feel it deep inside. This -- whatever is this -- this is not over, this is not the end of the story. I am still more than hepatic endometriosis. My boy and I went out to watch our first baseball game of the season together on Sunday, and as we stood in the concessions line, we watched a dad holding his son in the line ahead of us. We didn't come into our endo diagnosis craving a child. We came into it horrifically, through pain in my upper abdominal region, and then through ultrasouds and endoscopes and lapraroscopes and MRIs. Infertility was never on our mind, and the possibility of not being able to conceive feels a bit like a fender bender after a three-car pileup. At least it feels like that right now. But as we watched the dad and his son, I felt my sadness meet my joy and something in that became hopeful. There is still life ahead.

There is a song that came into my life just when I needed it most, from just the right person which is part of its gift to me. The lyrics go like this:

Now you can call it the devil, call it the big lie
Whatever it is, it ruins almost everything we try
It's the sins of the fathers, and it's the choices we make
It's people screaming without making a sound
From prison cells in paradise, while we're chained to our mistakes

Well, I don't know when and I don't know how
I don't know how much it's going to cost you
Probably everything
But I know you will go free

You can't see the jailer, you can't see the bars
You can't turn your head around fast enough
But it's everywhere you are
It's all around you
Everywhere you walk, these prison walls surround you

But in the midst of all of this darkness
Yeah, in the middle of this night
I see the truth cut through this curtain like a laser
Like a pure and holy light

I know I can't touch you now
And I don't want to speak too soon
When we get sprung from out of these cages, baby,
God knows what we might do

But I don't know when, and I don't how
I don't know if you'll be leaving alone or if you'll be leaving with me
But I know
You will go free...
~Tonio K. "You Will Go Free" from Romeo Unchained 1986.

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.