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.

On Birthdays, Bright Sides, and Dog Shit

Yesterday was my birthday. It was a good day; I received many cards and wishes encouraging me forward into new beginnings, new starts, promises of days to come. I smiled. I agreed. I hoped. When it came time to blow the candles out, I forgot to make a wish. It's probably better that way.

The things I would have wished for, for me, for you, for us. Huh. What an extraordinary year it was, so much learning, living, loving, grieving, giving things up, giving things in, reaching for the bar, another start, falling flat on my face. One thing that hasn't come very clear as I've made my sporadic postings in this blog is how important I think it is to find the funny in every moment of the hell and the folly because, really, all of this shit can be very, very funny, and if you choose not to laugh, it's just all despair all the time.

For instance: a few weeks ago some most excellent pals of mine lent me their super-licious yellow lab to keep me company while my sweet boy was gone away for too, too long on a business trip. One Sunday morning, I took the old fellow out for a walk around the block so he could complete his morning tasks. Of course, the showoff preferred a performance. He decided to leave his remains in the yard of a home with a toddler, while the youngster watched us through the screen door, greeting us happily, good morning! His dad scooted over, I waved sheepishly and said, oh, hey, sorry about all this.

Don't worry he said; I bent down and picked up my grandstanding dog's leftovers on the lawn. Case closed, right? No big deal. Wrong.

I had the dog shit in my right hand, holding it in the enviro-friendly blue bag. The next step was to simply turn the bag inside out, so as to tie it up neatly and carry it away. Easy-peasy. Except the goddamn bag had holes on both sides. Out came the shit, ricocheted off of my pajama leg and went splat right back onto the sidewalk. And there I was, with two choices. 1. Decide that I was about to enjoy more or less the worst and most humiliating day of my life or 2. Figure that once you've had a pile of dog shit ricochet off of your leg and splat down irretrievably on the sidewalk, in front of an audience, it really can't get much worse. I did my best with option two. I made a half-hearted attempt to clean up the mess, actually waved again at the happy family behind the screen door, and tarried along on my way. What the fuck.

There's so much dog shit out there ricocheting off of us all the time. We try to clean up the way we talk about it so that maybe we can somehow talk ourselves out of admitting that it really is as bad as we fear it might be. If you read what I just wrote, you can see what I mean. At first I talked around my problem, the dog had tasks, remains, leftovers. But this is baloney. The dog needed to dump. And the worst part about caring for animals is that we get to clean it up.

We get to clean up the shit. So much shit.

Back to my birthday. Well wishes galore. People imploring my future to smile more brightly on me than have the past few years. I wanted to drop to my knees and insist it to be true. I don't know if it will be. I think it might be. I hope and I pray.

Minimally, I know this: even as I'm not sure about so much of what I believe, there are a few things that I cling to quite tightly, things that pull me through when I start to drown. I believe in hope. I believe in goodness. I believe that most people mean well. I believe in second chances, and maybe even thirds and fourths. I believe in saying I'm sorry and meaning it with all my heart. I believe in mountain hikes. I believe in drinking from streams. I believe in reading books. I believe in poetry. I believe in music.

And I believe the hummingbird at my window just might be the best sight I see all day, until my sweet love comes home from work and walks right through our door.

I believe all of these things, and for right now these things are enough to keep me moving forward through all of the shit I still must find a way to either clean up or else gracefully learn to endure.

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.