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.

Lost and Found

I think the thing that's been hardest for me to grapple with over the past several months, maybe even years since I first started to become symptomatic with this most weird form of endometriosis, is the loss I've experienced. I could talk about it in purely quantitative terms -- I weigh at least 20 pounds less than I did when this all started, probably even a good deal more than just those 20 pounds. And all of this without trying. I'm sure some people would think, geez, wow, that sounds like a good side effect to me, but for me it isn't. Now I feel like when people look at me all they see is this skinny-twiggy thing where a strong and athletic girl -- strike that, woman -- used to stand.

Which leads me to what else I've lost. I'm a runner. I've been running now for as long as I can remember, and being on the roads or out on the trails brings me a kind of wholistic grace that is ineffable yet entirely tangible. Right now this running is lost to me and the truth is, it might be gone forever. I seem to be the only one who admits this readily. My friends and family urge me forward, say, you'll be back. I hope they're right. But I live with the side-stitch that won't die, even if I'm just sitting in a chair. Even more than that, or less than that, you choose, I don't remember quite how to get into shape. Getting into shape is hard. You have to get out of the house. You have to slosh along for a minute, maybe two, and then walk for three. You have to hurt. There are no endorphins yet to pull you through, no yee-haws, ha, has, I just passed that dude who cannot keep with me. All of these highs are gone. In stead there is just stomp, stomp, stomp along. This does not make me feel like a runner. Maybe I should dig out one of my marathon medals and begin this process of starting anew carrying its steel along in my hand. Maybe that would help. I don't know. Right now I'm just struggling to get out of the house to do it, even though I know, I love to run.

I commented to my graduate advisor -- I'm silly enough to be working toward a Ph.D. in the midst of all of this madness -- that what's been amazing to me as I've grappled with the hormones and the surgeries and the pain and the isolation and the hurt and even the funny is the way that this disease has made me so much more generous in some ways and so much less so in others. For the past few days, I've been rolling around in my mind what I was trying to say when I made this comment, and I'm still not sure. I guess I just realize that along with the loss -- the don't eat this's anymore, the don't runs, the nobody else has what you haves, and a lot of other things I haven't had time to articulate here -- I'm beginning to recognize, to slowly realize, that generosity is a gift of the heart. Where this gift has been poured forward to me I feel a kind holy, soul-saving water that I want to share with others who hurt. And the others who hurt are, after all, each one of us. The generosity given to me, increases two-fold the generosity I have to give. Yet, something gets subracted in all of that addition. This is where my generosity has lessened. I feel like I want to write something about empathy and reciprocity, and the ability to stand silent in front of that which you can never understand. Endo has taught me how important this is, and how often in our arrogance we refuse to admit that we are small. Endo has taught me that we cannot demand that others attempt to understand or share our pain, but we can be humbled to the core by the few who take the time to try. This is the good stuff. This is the found. Endo has taught me to give as generously as I can (and I'd like to think that's pretty generous) but not to be used, and certainly to learn more often how not to be all used-up. Pain kind of has a way of teaching you that.

I live with a disease that doctors don't understand, though many of us have it. This is scary. This makes us small. We all experience the loss of this. But some people come along and hold our hands and wait with us, in moments of joy and in moments it hurts the most. I suspect this is when they feel most helpless. I wish they knew that this is when we -- or at least when I -- feel the very most found.

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.