Wednesday, April 4, 2018

Epilogue.

I began writing this thing on March 11th, 2008.

About a week ago, for the first time in seven years, I opened this up, and I read it beginning to end. I didn't plan to, it wasn't some grand purpose, I just opened it up, and it gathered its own momentum. Much of it feels like dispatches from another country, and another time. This is how my life was, once. It's not how it is now. It didn't feel bad, strictly speaking, to revisit this account of this part of my life, but it did feel largely foreign. I felt acutely the time and distance. 

I began writing this a little more than two months after the death of my sons. It was an incomprehensible blur of a time, swallowed by shock and numb incomprehension. I would feel things, think things, experience things, and have no idea what to do with them. But before their death, I knew how to write. I'm an academic, I have to write (and worse, grade the writing of others) as central to my job. Before that, I wrote creatively. I'm comfortable with language. It made sense as a medium, as a channel for my rage and sadness and platform to hash out something for which nobody can be prepared.

So I began writing this thing.

It's a little more than ten years since then, now. Ten years since S. and I lost our sons to the cruel whims of genetics. For about three of those ten years, this was my voice, and other people spoke to me through their own experiences. I discovered that we weren't alone in this. I mean, on a daily basis, we were. But there were others out there. And so I yelled into the void, hoping that if I yelled long and loud enough, I could will myself to healing, to understanding. And I got responses, and they helped.

But, to be honest, after a certain point, I was overwhelmed.

You never want for writing about your grief to become an obligation or a job. After a point, I didn't feel like I had anything new to say. In reading this now, I see the same themes, images, jokes, examples, come up again and again. My language was limited. What felt like optimism then reveals itself now to be denial, my mantra that things were getting better, that we would get through this, that there was light at the end of the tunnel. That was me telling myself what I needed to believe to keep going.

After a certain point, it didn't help anymore.

The year following my last post here was a bad one. S. wasn't getting better. She was slipping further into depression. I couldn't help her, it took everything I had to keep my own head above water. I was functional enough to work, so that's what I did. I felt like I was carrying a lot - I felt like I was carrying our survival on my shoulders, and I couldn't stop, I couldn't rest. I had to keep going, and endure. Because I could function, I had to function, and 2012-2013 was its nadir. I didn't have anything left that wasn't doing my job, a one-year gig that uprooted us to a different city, looking for the job that would - would have to - replace it, and pay what bills I could, cook food, do laundry. Everything I felt got shoved to the back of my head to focus on what was in front of me: Keeping a roof over our heads, looking after S. to the extent that I could, which was not much.

A lot of anger, a lot of resentment built up, and I shrank into myself.

There wasn't anything left for writing about it. I couldn't say any of it out loud. I had to put on a brave face. And that used up everything I had. I kept hoping things would get better, afraid they never would, and just put one foot in front of the other. Endured.

And things got worse before they got better. S. was in and out of the hospital. Substandard care, doctors and counselors who didn't listen, or who tried, but were overwhelmed by too many people to serve with too few resources. Both of us adrift, trying to hold on, barely able to care for ourselves, let alone each other. Those bright moments outlined in my posts here grew fewer and further between, the bar for "good day" got lower and lower.

And I didn't write about it here, because I couldn't say it out loud, even to myself. So I went quiet.

Every now and then, I'd see comments, or people would email me asking what happened, how we were doing. I couldn't even begin to respond to them. I'd have to say things out loud that I couldn't.

It still nagged at me, though. This thing felt unfinished.

I have a recurring dream, that I'm moving out of an apartment, and in trying to get everything packed, I discover a room full of stuff - boxes of things, shelves full of books, stacked on top of each other, covered in dust and cobwebs, and I am struck by the realization that I can't remember the last time I was in this room, that I had forgotten about all of these things, and overwhelmed by realizing just how much more work I have to do - where is it all going to go? Should I hold onto it? I feel bad for neglecting it, forgetting about it, locking it away.

It really struck me this year that it's been ten years since my sons died. Not bad, necessarily, just the awareness that that much time has passed, how much I've changed, for good or ill, since then. I feel much older than the person who wrote the posts here.

So, ten years later, I return to this thing, to unlock the door and do something with it. To provide an epilogue.

In the seven years since I stopped writing this, things did get worse with S, but they're getting better. We split up three years ago, our relationship another casualty of child loss. That's not entirely fair, the cracks came earlier than that, I think when I started grad school. It, and the move that accompanied it, changed the dynamic of our relationship in ways that didn't immediately damage it, but laid the groundwork. It took us awhile to find our feet, and after we did, then came the infertility, and then the loss, and those were wedges that just got driven deeper and deeper. We're still in touch, still close - as she observed, lack of love has never been our problem, and nobody but us will ever understand what we went through together - and it was as amicable a parting as one could hope for. I think we both realized that what happened to us was such a profound change that we needed to figure out who we were from the ground up, and we'd grown so codependent that that wasn't going to happen in the presence of the other. We needed a do-over. I'm rooting for her every day. We had plenty of time together, and I want her to find her happiness again.

S. still has her struggles - her trauma and grief and loss were embodied in way mine weren't, and it took her a long time to find people who would listen, who would take her seriously, who could actually help, who could provide effective treatment. She's still healing and is finding her feet, but she's brave and tough and resourceful on her own. And she's a genuinely good person which, all world events to the contrary, does count for something.

I found another job - something long-term, where I'm appreciated and where I fit. I'm in yet again a different part of the country entirely, and as on my own as I've ever been in my life. All of the grief and sadness and loss I spent years deferring - and how much was me needing to be the functional one versus just using that as an excuse to not deal with my feelings is still not clear to me. I was in a lot of denial, and being alone basically brought all of it home with interest accrued. After about five years of being varying degrees of a mess, I'm starting to see daylight, to consider what life might look like when it isn't defined by endurance, for the first time in fifteen years or so. (Like I said, grad school was rough.)

So this is the epilogue to my story. I don't know if any of the links on this thing work any more, whose voices are still out there, but I want to keep this preserved, as an account of this journey nobody wants to take. Especially for the fathers, because we don't get a lot in this to call ours. I wish I could say it had a happy ending, but it hasn't really ended, and happiness isn't an endstate. It's something you get along the way.

I'll just say this:There is hope. It doesn't always feel like it, and there will be stretches - days, weeks, months, years even - when it feels like there isn't. But there is.

There is hope.

I began this thing by asking "how did I get here?"

Well, literally and metaphorically, I'm not here anymore. But feel free to read, to take the trip, and get from it what you can.

There is hope.





Tuesday, April 5, 2011

Life Under The Microscope

As most/all of you probably know from my wife's blog, she just recently got trolled by some grotty little specimen who thought it'd be funny to say things like "dead babies are funny" and "haha you killed your kids" and linked to a childfree forum in as well. Honestly, I'm surprised it took this long, and like I told S., "forget it, Jake - it's the Internet."

But still, they said something mean to my sweetie, so I went to this childfree forum to see if I could detective up anything, see if this chucklehead bragged about it or if they had a devoted section to trolling mom blogs or dead baby blogs. Came up empty on both counts, which was a little reassuring, but I was a little surprised to see the amount of sheer vitriol these folks had for people with kids. Oh, sure, much of it was focused on wholehearted participants in the cult of mommy, the sort of people that years of infertility and child loss have made pretty hateable to me. But so much time and energy devoted to being angry at people, even people at whom I'd be angry, sort of baffles me. 

It makes my own identity more complicated. There's a decent chance that S. and I will never have kids at all, and a better-than-decent chance that biological children are already off the table. So who would we be then? "Childless?" That's, like, one house down from "barren," with all of those pitying connotations. "Childfree?" That make it sounds like you had a bad case of children, and are now child-free. Maybe we're just us, and if anyone asks, we'll just say we don't have kids. If they're gauche enough to push, I will tell them, and they will regret it.

I'm not childfree in that forums' sense. They revel in it and the contempt for people who have had children is palpable. I understand where that vitriol comes from, but it's not me. It will never be me. But part of the reason it's out there is because there's nothing between childless and childfree. Either you can't have them or you think they're disgusting. And you can't not be either. People ask. People always ask. And always judge.

So fine. Pull out the microscope and look at me. The first thing you'll see is a middle finger.

Worth It For The Story

A few weeks ago, I was listening to a talk on counterfactual seeking - our tendency to look for alternatives to outcomes. We're wired as thinking creatures to make meaning, to place our life events in context, to think how things could have been worse in order to make ourselves feel better. "What if" can help keep us sane, as I've told classrooms full of college students.

All throughout the talk, I kept thinking of the next line of my lecture...

"But what if the worst did happen?"

I've been reading a series of graphic novels lately called The Unwritten. If you like Neil Gaiman's stuff, Bill Willingham's Fables, etc., I'd suggest checking it out. In short, it's about the relationship between the world and stories. The protagonist is a story made flesh, at war with shadowy men who control the narrative of the world. Stories frame our worldview, we tell ourselves stories to understand the things that happen to us, the world is made out of stories. Imagine a thought that you could not communicate with language. Try to recount something without narrative. As my wife is fond of saying, "to read the world, you must read the word; to read the word you must read the world."

To understand the death of my sons, I have talked and talked and talked. I have written and I have talked and I have written and I have written. It is part of me now. And I think one of things that has kept me sane in the absence of "what if" is internalizing that story in the context of a much larger one.

Whenever I teach a class on child development (that it's not my area of expertise is doubly hilarious), I bring up my experience when I give the lecture on birth (including miscarriage and stillbirth and ART). I don't give them the whole story, just enough. It is one version of the story. I rehearse the different levels of detail, different types of explanation for different groups of people, the ways I can artfully dodge the ugly details. Who gets to know what when.

My grad school advisor once said to me: "All we have are our words." All I have are my words.

I was talking to S. about this today after a very nice, sunlit lunch out together. About passion for academic subjects and where it went after the boys died. I came back from the break, from the deaths, to my major project for the semester - my doctoral dissertation. How the fuck was I going to give even a fraction of a shit about dual-process models and the merits of an associative/propositional approach over a systems of reasoning approach? How? No fucking idea. It seemed ludicrous on the face of it. I just put my head down, did the stuff I could do, and over time, I began to tell myself that I had to have a life beyond the loss, beyond the deaths, and that something was going to need to occupy it. What was going to occupy it was my curiosity about how people think and act, and my conviction that education is important.  I never said it out loud until today. The words made it real.

It's been going on 3 years now that I've lost my sons. Those days right after are both a distant memory and viscerally present, sitting on the couch, wrapped up in soft, comfortable clothing, staring at the TV and not seeing anything. I can be around children now, it's not so raw. I am not so angry all of the time anymore. They are a part of my story and always will be, but I'm still here and they aren't. There's still a lot to tell.

Every now and then I'll find myself in some improbable situation - the time my flight had to make a refueling stop at my final destination because we'd been stuck in a holding pattern over my connecting airport, or the time I got stuck in quicksand in the middle of my small college town - and every time, I say "this is worth it for the story alone." I would hate to live a life without funny, interesting, moving stories. Every story adds to life, even the tragic ones.

Sunday, September 19, 2010

Welcome To Fight Club.

Fight Club might have had a point.

Not the obvious one - that underground bare-knuckle fighting is awesome - because that's retarded machismo.

But the idea that you can't know yourself unless you've been in a fight? There might be something there.

Getting beaten is a direct, specific experience. It isn't another thing, it is what it is.  It is the most basic form of an intensely personal crisis. There's something about the implacability of it - whether or not you want to be, you are getting hurt. Losing the boys was happening, whether we wanted it to or not. It had its own momentum, and we were caught in its center. Begging for it stop would do nothing. So, as a man, I had to stand up in the middle of it. Like a beating, I had to withstand it. This is the lesson we learn from childhood - that we have to learn to take it, to push through crisis and chaos and grief and continue to function. To man up.

At one point in the film, Tyler Durden gives the narrator a chemical burn and prevents him from doing anything but experience it. No going to a serene place, no blocking it out, no mediation. Feel the agony. Be present as you are hurt by something you cannot stop. Think through it. It is an unstoppable force, and in everything - communicating with doctors, calling family and friends, taking care of S., paying attention, weighing costs and benefits, pros and cons, probabilities, having to think even as I could do nothing but scream inside - I had to become an immovable object.

And now, in many things, I continue to be immovable. As bad as it was, never say it couldn't get worse. But the stakes were higher than anything that came before. Life and death, and decisions, and raw suffering I couldn't avoid. It's hard to get really upset or anxious or freaked out about little things anymore. I've seen an abyss. The cold, unblinking eye of circumstance. I don't get as anxious as easily as I used to. I was called upon to do what men are expected to do, and I did it. I grew up that day. Ironically, it was the loss of my sons that made me the sort of man truly suitable to be a father.

I became a man. Like Richard Pryor said, you aren't a man until you've had your damn heart broken. I had my heart broken. This is what it means to be a man who suffers this loss. Toughen up. Withstand it.  This is the moment that defines you and puts everything into perspective. You are in this, you have to be here and still be clearheaded enough to make one of the worst decisions of your life. And for us, that's where our story ends. We go back to work, we continue with life. We soldier on.

The first rule is you don't talk about it.

The second rule is you don't talk about it.

If this is your first night, you have to fight.

Sunday, September 12, 2010

Caesura.

My dreams are full of dread.

This is the earliest I've been up on a Sunday in some time, and it's because despite the comfortable bed, the snoozing dog, the proximity of S, and the decongestant/cough suppressant that I take to reduce my snoring (mostly the cough suppressant part because that shit knocks me out), my eyes snapped open. I don't remember my dreams very well - I think last night there was something about the ghosts of some cult members, possession, and the importance of bell-shaped objects, all taking place in what I think was supposed to be a brand-new Apple Store - and although many of the dream's features would normally push it over into nightmare territory for me, I was just left with the same lingering sense of unease that I'm also getting from my more innocuous dreams lately. Not really sure what's that about.

It might be my medication. I'm on what seems to be a pretty optimal combination of happy pills, and my waking life is on a pretty even keel right now. I've also had some pretty nice experiences lately, just affirming, validating things, and that helps too. S. is doing a lot better, and that helps quite a bit. She's still grappling with a lot of issues, but she's actually dealing with them. It's hard sometimes, and it's painful, but she seems less stuck than she used to.  She laughs and smiles more. I see more of the woman I love every day, and it's good. Besides the fertility drugs, we also took all of the maternity clothes and books on motherhood we'd stashed in my home office after we lost the boys and donated them to a community resource center, a place that exists to provide the needy with necessities for free. A hand up. Even though it's tough to remember it in our pain, there are young women out there who are pregnant and are going to have a healthy child even though they aren't ready, and I have to know, even if I can't actually empathize with them, that that is fucking terrifying. Getting rid of that stuff made me feel lighter, less burdened somehow.

I'm still pretty angry, but it's at a narrower range of people. I'm at the point now where I wish Discovery Health would just subdivide itself into Discovery Gruesome Medical Stuff and Discovery Holy Shit Babies Everywhere so I could just avoid all of the pregnancy shows altogether and focus on the gross E.R. and autopsy shows. I've always had an easier time dealing with the wreckage of injury than the miracle of birth on a visceral (ha-ha) level - even before we were trying, we used to watch the show "Maternity Ward" (back when a healthy, typical person having one baby was considered interesting enough for TV), and the births always looked like bad monster effects to me - rubbery-looking babies covered in slime squicked me out way more than a guy whose legs were pointed at impossible angles.

So if I was grossed out before, I'm ruined for it now. Even above and beyond shows like "Paralyzed Dwarf With Autistic Quadruplets" or "I'm Not Middle-Class And White, And Yet I'm Pregnant" or "Is The Next Baby Going To Actually Kill Michelle Duggar And What Does This Say About Our Value System", the whole miracle of birth thing is ruined for me. My only experience of it is a dark, horrible parody, a nightmare-dimension version of blood and screaming and sharp, expressionistic shadows and fading in and out of consciousness. I think I know why I'm so fascinated with horror movies now - half the most useful tropes of the last forty years were there in that delivery room. That's where my trauma lives.

But I was talking about anger. I think finally being able to articulate my biggest gripe with modern parenting in the U.S. has helped some of the free-floating rage. Just being able to express that it seems like there's something about parenting that makes some people develop a blind spot for civil behavior around their kids - as if being a parent gives you license to be ignorant, irrational, rude and shitty about issues around parenting, and makes some people consumed with the most trivial shit all of a sudden - seems to have made that easier to deal with. Some of the stuff I say to the TV would still turn most people's hair white, but fuck'em.

I still don't know what the dread means, though. Maybe it's because S. is doing much better - the last time she was doing well (which was when we still thought we had a chance at having our own kids biologically), I started feeling my own grief more because I wasn't looking over her. That might be it, it's like an ache. Dull, diffuse, but still an ache. The throb of an old wound or injury when the weather turns. I'll live, I'll be happy, but this may be my legacy - the quiet ache when I see fathers holding their children, living alongside them. Whether this is okay with me or not is immaterial - it just is, whether I want it to be or not. I think we'll be okay. We'll probably never be whole, but we'll be okay.

The sun is out, and the sky is a cloudless blue. It's a quiet Sunday morning, and the cats are asleep on the couch, S. and the dog are sleeping upstairs. I'm glad for this moment, and I'm glad that I have what I have. If my dreams have to be laced with quiet dread, that's okay. Because at least right now, the world when I am awake is not.

Sunday, August 15, 2010

The Meaning of Just

adjective - guided by truth, reason, justice, and fairness.
adverb -  only or merely.
The word "just" keeps coming up.

It was one of those words that grated against us as we were trying to conceive. 


"Just relax...it'll happen!" 

"Just stop trying...you'll get pregnant in no time!"

"Just put your trust in the Lord and it will be fine."


"Just." As if it is simple, as if it is effortless. The easiest thing in the world for others.
It has been a struggle for us since day one. And it has not been a mystery for us. We know why we can't have kids.  Coming by this knowledge wasn't simple or effortless either. Lots and lots of tests. Operations. Meds. "Speculation" shares a root with "speculum."


Nothing about this process at any point could be described as "just" doing anything.


And there is the other meaning of the word.


If nothing about this process has been simple, then even less has been fair.


I used to pay lip service to the idea that the world is cold and arbitrary, that any meaning in it is the meaning we impose upon it. I thought I believed it. But being unable to conceive and losing the children we were able to have, and watching that tragedy burn a swath through my life...


I used to believe it, but now I know it.  There is nothing just about what happened to us.


Maybe I'm surrendering. Not to the despair, but to the idea that struggle is not enough. Ironic, since the idea that hard work isn't enough is something I've had to explain to my students over and over again. Finally learning my own lesson, I guess. So I've internalized it, this idea that just wanting it and working hard for it is no guarantee. I've surrendered to the idea that the world does not care about my problems. People do, but the world at large does not. The world moves on whether I grieve or not. And it is not going to wait for me. 


S has been struggling a lot with the sheer unfairness of all of this. So much effort, so much money, time, life lost to it, all for something other people can even do by accident. There's even a TV show, "I Didn't Know I Was Pregnant." Struggling with the cold, hard slap of the world. A world that moves on, that does not wait, that watches our grief with a lightless, unblinking eye.


A world that just is, and is not just.

Saturday, August 14, 2010

Casualties

S and I took a big step today. We got out of bed (before noon - that would have been a big step two years ago), did some housecleaning, and then did some more housecleaning.

Specifically, we gathered up all of the leftover drugs and medical paraphernalia from our fertility treatments so we could get rid of it. Deep breath, the thing hanging over our head as we ate lunch. Want to do it but don't want to do it. Hurts facing it but hurts to have it looming over our heads. Little reminders in every corner of the house. Time to get rid of it.

So we went through every room, pulled together all of the various and sundry bags of medication bought and donated to the cause. Found all the sharps containers (including the one we kept in the liquor cabinet along with the Ativan - our one-stop vice cabinet, it was - and gathered everything together on the living room floor. Where we sat, sorting. This has expired, this hasn't, these are still usable, these aren't. Box up the stuff that's still good, gather the containers, separate regular garbage from garbage with expired drugs in it (probably not a good idea to pour hormones and blood thinners into the water supply) and go, go throw it away, get rid of it.

For S it felt like another failure. Years of trying, hope, and heartbreak, reduced to a few boxes and plastic bags.

For me, it felt like something between the removal of a tumor and an exorcism. Something offending yanked and tugged out. The hole is open and raw, but fresh air is getting in.

The day is gray like slate, hot and humid. An oppressive day, not a day for joy.  It's quiet. We've indulged in some comfort food - potato chips for her, beer for me, ice cream for us both.  As we pick it out, my mind returns to the days after we lost the boys, the thought "why am I buying junk food? Fuck you, dead babies." That was the mantra, the war cry after the boys died. "Fuck you, dead babies."

I'm thinking more in terms of war with regard to our experience lately. In a recent post I referred to people who haven't struggled with child loss and/or infertility as "civilians." And today, as we were disposing of the expired drugs, I thought of all of the vials crushed, and it reminded me of some dialogue from The Wire, a/k/a "one of the best pieces of television ever created and probably the best cop show of all time"...

Detective Leandor Sydnor is preparing to go undercover to do drug buys. He and the other officers solicit the opinion of one of their informants, a longtime addict nicknamed "Bubbles." Bubbles comments on the relatively clean soles of Sydnor's shoes...
"You walking down them alleys of the projects...
you stepping on the dead soldiers."  


"Dead soldiers?" 
"Yeah, empty vials. You can't walk down a Baltimore street without them cracking underneath your feet. You want to know if a fiend is for real...check the bottom of his shoes."
So I'm thinking about all the dead soldiers. All the vials, all the needles. The ruin left in the wake of all our attempts. Every war has casualties, every military operation (huh, "operation") does collateral damage. The veterans who return (and it occurs to me that S used to read a forum for people doing IVF called "the veterans board") have memories they won't share with anyone else - the blood, the screaming, the loss. One minute they're alive, the next they're dead.  You make life and death decisions, and the deaths happen in front of you and there's nothing you can do but keep them from suffering. We make horrible jokes, cruel jokes, and find it hard to be sympathetic or sensitive to the problems of others.

We have come home from a war, but we brought the war with us.

An old joke:
Q: Why did the Vietnam veteran cross the road?
A: You wouldn't know, man! You weren't there!
I don't know that it's a hard and fast line, but in my head I've divided up our friends into "the ones who get it" and "the ones who don't get it." They're all still my friends, but some...know. They've had their own losses or their own struggles conceiving, or they were there for us when it happened. They get it. Others don't, and I don't tell them stuff, it's not for them to know. Just like fathers and grandfathers don't like to talk about what they did in the war. I still love them, I still enjoy their company, and our loss doesn't define me, but there are some places in my head and heart that are mine and mine alone.

Maybe the anger is my desire to survive, to keep this from winning, as it were. To try and rise above the trauma and live well. Today felt like a step in that direction.  Coming home from the wars.