A Letter to My Students

I've been teaching a class to highschoolers on newswriting the past few weeks. The final assignment is a column -- a chance for the kids to shine and leave us all with some thoughts to remember them by.

I promised them that I would go, too.

Here's what I'll have to say. We'll see if they like it.

A Letter To My Students

When I was a senior in high school my English teacher gave me an incredible gift. Actually, she gave it to our entire class, in the days leading up to our graduation, and now I am passing this gift onto you.

Her endowment came in just a few simple words and they went like this.

Dear students, she said, you are being told that these are the best days of your life, and this is such a great lie. These are not the best days of your life. Most decidedly not. Not even close.

I remember receiving her declaration like a lifeline, my lungs expanding like balloons beneath the walls of my chest. I had gone through my high school years fearing that I had missed out somehow, that the good things had passed me by because I was not terribly popular, pithy, pretty or rich. I didn’t wear the right clothes. I rode the bus to school. I liked to read too much. My elbows were too bony. My shirts never fit quite right. I tried too hard. I knew that I was missing out.

Our school presented a musical my senior year – if I remember right it was Grease – and the excitement of the performances stuffed up the hallways of my high school in the days leading up to opening night. I wanted to go and see. No one invited me to go along with them. I asked my mom to the Saturday night show, and we went. When we arrived at the auditorium, some of the other kids talked and laughed and made jokes with me. It was fun. My mom said I could go and sit with them if I wanted to, that she’d be fine sitting alone. But I knew I had to sit with her. No one had asked me over to the chairs next to them.

And so I feared with all my heart that the best days of my life were such a terrible bust. Then came Mrs. Coehlo’s wonderful words. These are not the best days of your life, she said. She promised. She promised and I believed. Whether or not you’re the lead in Grease or the skinny girl sitting next to your mom, it doesn’t matter, because it gets so much better than this.

You must go forward into the great unknown and come to understand that there are love affairs to be had, children to bear, countries to visit, mountains to climb. There are things to study, colleges to go to, people to meet, dreams to behold, songs to learn, friends to cherish, jokes to laugh at, and dances to groove.

You must still go out there and live in your first, very own apartment, with the leaky faucet and without the dishwasher so that you can grow mold on your cheese and fur on your tomatoes and slime on your turkey. You must feel so proud of this accomplishment. You must promise yourself to eat healthy and immediately fall off the wagon and survive on Dominoes Pizza for a week. You must hurt sometimes, because hurt – if you let it – can become an incredibly instructive and you will watch as your ennui blossoms into possibility and you flourish. You must simply trust me on this point. Someday you will know exactly what I mean.

You must get your first job, your first true love, your first broken heart, your first taste of justice, and your first whiff of the amazing expanse of whatever you know to be grace. You must become your own friend, and when you do this, you will have accomplished an incredible feat. You must learn to recognize what this feels like, because you will probably have to do it again, and again, and again. We humans like to turn on ourselves, and the knives we throw in our own backs cut hard and deep.

You must learn to do this less. You need your own companionship so much.

You will go forward and you will remember these days, some of you more fondly than others. Remember this, too, though. You can tell a lot about a person in their later years by how much their adolescence still means to them. Life is a journey toward what is ahead. And so –

Take risks, but make them smart ones. Don’t get yourself killed doing dumb things, like drinking and driving, taking too many drugs, having reckless sex, or just being stupid with guns. Know that whatever happens to you and however hard you fall, you can get up, somehow. Bear in mind that getting up is easier if somebody extends a hand in help. Be a hand for somebody else. Hope. Always hope. Don’t worry so much about looking foolish. Remember it’s always better to learn than to know. Laugh. Dance. Be.

After all, the music, the moment? You know that you own it.

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.