only mostly dead

“They say I got brains, but they ain’t doing me no good; I wish they could.”
     – BRIAN WILSON, ‘I Wasn’t Made For These Times’

“There’s more to life than books, you know, but not much more.”
     – STEVEN PATRICK MORRISSEY, ‘You Handsome Devil’

When I was eighteen years old, I would have told you that writing was every bit as vital to my existence as breathing. Many days have passed between then and now – fifteen years’ worth of steady decline – until the same effort that once would yield a fully imagined story, if not two, now offers only a handful of stonewrung blood, a scant few overwrought sentences heavy with scratchouts and false starts, clotted with waste ink and knots of frustration, and lacking. Now I am thirty-three, and I am no longer a writer. But the memory of my youthful passion and resolve, of that deep faith I once held in my own abilities, is extraordinarily vivid, and sometimes so tangible that I almost believe it could still be hiding inside me somewhere, crouched in the dark and waiting.

* * * * * * * * *

My wife has a habit of saying that she “can’t find” a thing when she has not yet actually looked for it. This rarely fails to make me laugh and has become sort of a running gag between the two of us. A typical exchange goes something like this:

“I can’t find my keys,” she’ll say.

“Well, have you looked for them?” I counter.

To which she’ll respond, always mock-offended, “Well, no,” or, “A little,” or sometimes, “You see me looking, don’t you?”

Then I’ll say, “Why don’t you try…,” and offer up my best guess as to the whereabouts of the Item In Question. She then either goes to check this new possibility or puts on her best exasperated adolescent and says:

“I looked there already. Of course.”

“But did you look look,” I’ll say, “or did you just stand there and stare at the desktop without touching or moving anything?”

Then she’ll put one hand on her hip and sigh heavily and ape further pouty, bottom lip stuck out, and by that point we both usually crack up laughing.

The more I think about this, the more mine seems like nervous laughter.

* * * * * * * * *

Over the years I have found no end of things to blame for my gradual silence, but always I was able to at least feign denial by continuing to write intermittently, however insignificant the results. Then, a little more than three years ago, my son got sick. In addition to the obvious emotional pressure of having a critically ill child, the ordeal also put an enormous strain on our meager family finances. I took as much time off as I felt I could get away with, but it was only perhaps ten days after his initial diagnosis that I was forced to return to work while my wife stayed alone by his side.

The hospital where he received all of his care is about 50 miles away from our house, a commute which made it impossible for me to visit every day. This left me with far too much time on my hands to sit and think unhappy thoughts. One would imagine that this would have been a perfect opportunity to sit down with pen & paper and begin to try working out some of the things I was going through, and I did attempt this on an almost daily basis. But nothing was working. I couldn’t seem to get anything out except a rambling, senseless sort of late night pontification, generally calling into question most everything that had come before in the wake of this profound life-changing event.

And whether it’s always like that when faced with such circumstances, I don’t know. I still have a hard time putting it into perspective. I always thought I had endured life-changing events before – lots of moves, break-ups; a messy divorce; myriad career changes; childbirth; et cetera – but nothing close to this. Nothing anywhere close to this.

At any rate, there I was, still considering myself a writer, in the midst of what should have been the most tragically inspiring events of my life, and I could scarcely turn out a coherent sentence. I made attempts, as I said, not all of which were completely awful, but I was reaching beyond my abilities to express myself, and I could feel it. It felt like pretending, and that disgusted me. As far as I was concerned, the subject matter was sacred, yet instead of rising to the occasion, I found that I’d been rendered virtually mute. One day I reached the point at which I couldn’t go on simply playing at it any more, and just like that, I allowed myself to give up. It wasn’t that I suddenly lost all desire to write, but more that I could finally let go of the idea that I had anything truly worthwhile to say.

And here I am. Largely fruitless, as ever. But feeling, for the first time in a long time, unwilling to quit just yet.

par[ent]ry

So, I'm a dad, the proud father of two. My son is two and a half (or 32 months, in the odd menstrual shorthand of which parents seem so fond), and my daughter was born just one month ago today. Admittedly, parenthood isn't a job for which I thought I'd be very well-suited. I have never harbored any illusions about my own maturity level (or, rather, lack thereof), and I had serious concerns about my adequacy at the outset. The levels of selflessness and vigilance and determination required to be successful as a parent, not to mention the sheer magnitude of redefinition one's lifestyle must weather, weren't so much frightening to me as they were awe-inspiring, and my torpid self-esteem allowed for only the most marginal confidence as I began this adventure.

To my great surprise, I have found that fatherhood has come quite naturally to me, and in fact now seems like the only truly worthwhile thing I've ever done with my life. Equally surprising was the revelation that this so-proclaimed "world's toughest job" is an absolute riot; though it is not without its myriad vagaries and struggles, of course, I certainly find myself laughing much more often than I am crying.

My son Jeremy (named for Jem Finch in 'To Kill A Mockingbird') is so very cool. He's at the amazing age when some new aspect of his blossoming individuality seems to manifest itself each day, and it's such a blast to watch a person appear from the ground up like that, magically; I can't get enough of talking to him, listening to him, studying the ways he interprets and interacts, watching him puzzle through the intricacies of the world and how it works. The time I get to spend with him, though never as much as I'd like, is always the highlight of any day, and for all my concern beforehand regarding the ways in which my life would change, I can scarcely remember what it was like without him.

Not too long ago, the possibility arose that I would be reminded in the most terrible way; at three months old, Jem was diagnosed with a rare and potentially fatal blood disorder that saw him enduring chemotherapy at four months old and a stem cell transplant two months later. With more than a little luck and grace and the most extraordinary pediatric medical care available anywhere in the world, we're thankfully out the other side of that darkness now. As 'out the other side' as one can ever be after such an experience, anyway; Jem is almost 100% healthy, but still, there are remnants, remainders. He grew sick at such an early age and was sustained on liquid nutrition through such a pivotal period of development that he never learned how to eat properly. This situation continues to improve, though we do still struggle with it, and despite the fact that we must continue to supplement his meager intake of solid food with four-per-day boluses of a prescription formula passed through a little plastic-and-rubber g-tube knob in his stomach (two inches or so to the northeast of his bellybutton). Sometimes I have to remind myself of his age and the fact that two-year-olds often don't eat very much, that it's actually fairly common behavior, circumstances notwithstanding. I wish it didn't require reminding myself.

He also just recently transferred from the care of the oncological team at the hospital where he was treated into what they call their Survivor's Clinic. The Survivor's Clinic is a new team of doctors assigned to kids who are two years post-transplant or into remission. The team's collective expertise is dedicated to the careful study of his physiology with special attention to the countless thousands of ways in which deliberate and sustained administration of radioactive chemicals into the human body can jack it all up. They run lots of tests that monitor his development and then do their best to utterly horrify us with the results. But we have to love them -- they mean well, really they do. Surely, they must.

Through it all, Jeremy has been wonderful, such a happy child, the picture of sweetness and intelligence and spirit. I hate to be one more parent who can't shut up about how their kid's the ideal, but seriously, folks -- the guy's a knockout, a total home run in the child department. He said two things tonight that I can't recall ever hearing him say before. The first was when he answered my wife Holly's admonition of "I love you, Jeremy" with "I wuff you too," and he now acts as though he will never respond to a declaration of love in any other way, having repeated it over and over all night, including when I tucked him into bed.

The second occurred while we were playing in the floor of his room before dinner. I was trying to clean up a bit, and he got distracted and wandered out of the room. About sixty seconds later, he reappeared in the doorway and said, "I'm back!" This kind of happiness is unquantifiable.

And now, as of thirty days ago, we also have a girl. Her name is Ella Caroline, and she is full of piss and something quite unlike vinegar. She also suffers the misfortune of bearing a marked resemblance to her father, but other than that lamentable business, she is perfect in every way.

Not much to say about a newborn, really -- they eat, they sleep, they cry to eat, they poop, they eat, they eat; they poop, they poop again, then pee on you, then puke on you, then sit there looking cute and very old, then sleep, then eat, and eat, and eat. And eat. Holly is working hard to cope with the extraordinary challenges of breastfeeding in addition to the enormous physical and mental strain of the surgery and the sleeplessness and the hormonal revolt, and I am doing a lot of housework and trying to lighten the mood by acting my usual silly self. For example, I have begun to use the term 'boob juice' when referring to breastmilk. Thus far, I have not found its usage to elicit the mirthful response I intended (alternatives under consideration: 'boobiefood', 'breastfruit' and 'teatloaf'.)

Somehow I had forgotten just what a very small thing is a newborn baby. Infants are so very tiny, in fact, that it always makes me feel somewhat uncomfortable to handle them. I realize that I am fully capable of doing so in a reasonably responsible manner, but still the naked reality of their fragility can be enormously intimidating to me. Wow, but this one's supercute though, man. She totally melts my heart. And I find that it's considerably easier to stop worrying so much about breaking them when you can cradle them against a chest filled with something like fresh-baked cookie inside.

I just stood up from where I've been writing this out and took a few steps around the kitchen to stretch my legs. It's almost two a.m., and Holly & Ella have been sleeping on the couch in the next room since before midnight. Standing in the doorway a moment ago, watching their breathing, the sleeping faces of my beautiful girls, I thought about how very lucky I am, and how some days I'm so tired I just want to whimper like a puppy, and how other days I'm so excited about my life that I'll sacrifice precious restful sleep for the equally rare opportunity to stay up late at the kitchen table singing love songs about it with a pen.

ill-advised

I have begun an experiment wherein all the recent e-mails I've sent have been otherwise perfectly ordinary, but the subject lines are goofy crap I've copied from spam - stuff like 'Wall Street Alert!' and 'R U Big as a Barn?' and 'Be a sperm-man with truckload of sperms' - in an attempt to see if more people scan their new mail by sender or subject.

Incidentally, it would seem that more people scan by subject line, since I haven't received replies to any e-mails sent since I began this brain-damaged endeavor. Either that, or nobody likes me.

Oh, PS - check this out! Cleveland rocks!

need gift ideas for those hard-to-shop-for behavioral psychologists on your Christmas list?

Look, everybody – it's Pavlov's toy.

a quickie

Hello, everyone.

I'm sorry so much time is passing between updates these days. The last few weeks have been utter madness at work, and I have only been able to make it to the hospital for short visits in the evening every two or three days. It makes me crazy, being away from my babies, but there hasn't been any choice lately, and I've had to press on the brave face and pretend it fits.

Jeremy's progress is achingly slow, but right on track. Things are good - blood levels continue to climb, and we're down to one antibiotic (from the previous buffet) and off the morphine completely. He's taking Methadone for the withdrawal symptoms, but so far, thankfully, they only manifest themselves in general grouchiness and a little nausea. Almost all signs of the mucousitis have disappeared, which means that he feels much better, and the elevation of his mood is significant, while being slightly offset by the aforementioned morphine withdrawal and the big doses of steroids he's been receiving. Still, seeing him smile and laugh and play again, seeing him begin to eat again, act the part of a normal healthy baby again, brings me such great joy that I have absolutely no basis for comparison.

Thank you all again for your thoughts and prayers. One of these days, I'm gonna drive to every one of your homes and personally administer much-deserved hugs, despite the protests of your unsuspecting spouses.

Meanwhile, Holly and I celebrated our two-year wedding anniversary this week. My father, kindly gentleman that he is, allowed us an entire night on our own. Holly got to visit our actual house, which she hasn't been able to do for almost six weeks now, and to witness firsthand the full extent of my startling domestic skills. I took it as a good sign that, immediately following her statement that the place was "spotless, holy crap", she totally jumped my bones.

Boy, that house sucks without them. I find myself listening to loud music almost every second I'm there now, in an attempt to diffuse some of the emptiness. Lately I've been stuck on The Glands' eponymous record from several years ago; it's excellent, and I've been positively wearing the grooves off it (the vinyl version is five or six tracks richer than the CD version, and ordered differently, and far superior, in my own little opinion, but it's a great album regardless, and if you've never had the pleasure, then get thee to Best Buy or wherever, 'cause life is filled with uncertainty, and this is one of those rare guarantees). Has just the right flavor of melancholy exuberance that seems to perfectly soundtrack my life these days. I want to be blissfully happy about every piece of good news, just jump up and down, to do donuts in the clown car 'til the wheels come off, but I can't completely let go and revel in my joy for fear of the backlash of bad luck I'd surely cause.

But hey - if that's the worst part of the fight right now, then hallelujah.

PS, folks - if you're interested in keeping closer tabs on the progress of our little heavyweight than a layabout such as myself provides, then check out Holly's hospital weblog, which she pretty much updates daily. She also knows lots of medical terminology that makes my face go all frowny. (No pictures of her, tho, unfortunately...)

corny

It's 5am, and I'm heading home from the hospital to shower and get ready for work. I only have a second, but I wanted to let everyone know that the transplant went beautifully yesterday, better than anyone expected. Jem continues to amaze his doctors (and his parents) by practically skating through all the parts of this lengthy ordeal that they expect to be the most trying, and yesterday was no exception. He made it through the entire transfusion with no nausea, no fever, no fluctuation in blood pressure at all, stayed perfectly content until about six minutes after they were done, and then fell soundly asleep.

We still have a good stretch of road left in this pilgrimage, but so far, so good. He's the most immunocompromized for the next month, and it'll take two or three weeks before we know if the new cells will regenerate his system like they're supposed to, but we're off to a terrific start. We found out today that the cord blood donor was female, so not only is his blood type changing from O negative to O positive (how's THAT for sci fi?), but he'll also really freak out anyone who ever tests his blood, as they will find female chromosomes there that they can't explain. Go, human body! Far out.

Thanks again to everyone for keeping us in thoughts and prayers. My little blog family means the world to me. More when I've got the time, I promise.

Oh, ps - there's a preservative in the transfusion blood that has a very peculiar odor, and ever since the procedure yesterday, Jem's breath smells like canned corn. I don't even slightly mind all the girlie chromosomes floating around in his sweet little body, but I really hope that smell doesn't last. I mean, I like corn and all, but yuck, dude.

superhero

As I type this, I am sitting at a courtesy computer in the hallway of a cancer ward on the third floor of a children's hospital. I am just outside my son's room, inside of which he sleeps peacefully, aided by the somnolent drift of Atavan and morphine and Benadryl through his bloodstream. It has been a long three months that has brought us here, to this night in this place. The clock at the bottom right hand of the computer screen says it's one a.m., which means that today's the day; in approximately ten hours, a nurse will start the blood transfusion that will determine the course of the rest of our lives.

The story in its entirety is a long one, and I have been fighting to tell it for many weeks. In fact, I don't know that I've ever struggled with writing like the telling of this tale has brought, and the fight still isn't over. Then again, nothing this important has ever happened to me. It becomes incredibly difficult, I've found, to shape the words that will convey how your entire life has changed in a few short moments, and you can spend innumerable sleepless nights examining and reexamining the details that surround those few moments, turning them over and over in your hands, trying to make sense of it, to find a pattern, some semblance of math or reason that would seem to add up to what has happened, who you've become, how the world looks and feels to you now, from this new perspective, through these new eyes. But it can't be done, of course. It's like taking a single piece from a thousand different puzzles and then trying to fit them all together to make an image you've picked at random from volume Nam-thru-Op of the encyclopedia. Even if you could manage to force the pieces together, maybe snipping off an extraneous tab with scissors here or there, you still can't fashion a picture that makes any sense.

I've written many pages about the events of the last three months of my family's lives, none of which fit together particularly well, and none of which can explain what has happened. At some point I may manage to assemble these bits and pieces into a moderately coherent whole, perhaps even for the pages of this very journal, but until then, this thumbnail sketch will have to suffice. The short of it is that my wife and I took our son to the hospital the weekend of Memorial Day with a persistent high fever. Less than a week later, his abnormal test results led doctors to their diagnosis of a rare blood disorder called Hemophagocytic Lymphohistiocytosis. The disease isn't classified as cancer, but it essentially behaves the same way as cancer and so is approached using a similar course of treatment. Our little Jeremy has handled it all like the brilliant, ebullient, tireless star that he is, with smiles and laughter in the face of so much ugliness and suffering. Through six weeks of the initial chemotherapy, his mood and character were so bright and delighted that you could never have guessed how sick he was if it hadn't been for the thin rubber IV line that sprouted from a tiny hole in his chest to poke out between the snaps in his onesies, or the steadily receding hairline that eventually left him bald as a cueball for the first time since before he was born, or the way his diapers would smell the first few days after a treatment (most chemotherapy is processed by the kidneys and leaves the patient's urine smelling strongly chemical, not unlike something burning on the eye of a stove). His remarkably constant good humor has made this ordeal infinitely easier for his mother and I to shoulder.

Still, it has taken its toll, on all of us. The past two weeks have been the toughest thus far, comprising the most intensely concentrated barrage of chemicals to his system, and it's finally begun to show in more upsetting ways. His appetite has completely dried up, leaving him to receive all of his nutrition through the IV now, and when he vomits (which happens at least four times daily, regardless of round-the-clock nausea medication), it is only a slick translucent green bile, just like the awful stuff we find in his diapers. His skin is dotted with hives, and mucousitis lines his throat and the inside of his mouth with sores, making even thumb-sucking too painful to endure. There are headaches, chills, and fever. He cries often now, whereas he so rarely did before, and the cry is pronouncedly different from the moderate urging tone to which we'd grown accustomed, sounding so mournful as to require enormous patience and courage from Holly and I to keep from bursting into uncontrolled sobs at the sound of it. The smiles and laughter from our happy boy are much fewer and farther between these past few days, and it is to us as if the sun has suddenly disappeared from the sky. And yet, we know the worst is far from over. All this recent hammering down of his immune system has been leading up to today - at 11 a.m. he will receive a bone marrow transplant that will hopefully negate the disease entirely and leave the three of us to lead relatively normal lives from this point forward. Whatever normal is anymore. I'm fairly sure I never knew in the first place.

For those of you that hadn't already connected points A and B, it was our family to which Poppyseed's generous entries about her friends' sick baby referred. The handful of 'bard denizens who learned of our plight through their kind inquiries regarding my prolonged absence from these pages have been wonderfully supportive, as have all our other friends and family, and I cannot thank them enough. Your words of comfort and concern have made a huge difference to me, and I'll never forget them. Please continue to keep us in your thoughts and, if you are inclined to such, your prayers as well.

Jeremy was 25 weeks old yesterday; he has spent more than half of his life now with radioactive chemicals coursing through his veins. I keep telling Holly to try not to worry too much. I tell her that this is always how superheroes are born.

---

As footnote: I can't sleep tonight. The strain and stress of the coming transplant have rendered my mind's shutters useless, and they've been stuck wide open for the last three days or so. Last night I cleaned our house (which is an empty, lonely place since Holly and Jeremy took up residence here at the hospital again) within an inch of its life. Tonight I wandered the vacant hallways of the hospital, eventually making my way down to the ground floor, where there is a bay of vending machines filled with all manner of bad food. I walked over to the only Coke machine I've found in the entire hospital that dispenses cans rather than those plastic bottles (Holly thinks I'm completely mental, but I swear the soda tastes different from one container versus the other, and I much prefer the cans), deposited 65 cents, and pressed the button for regular Coca-Cola. There was a huge CRASH! from inside the machine, and I watched in amazement as the issuing chute at the bottom of the machine filled with cans. For my 65 cents, I was dispensed nine ice cold Cokes.

It may seem silly, but I believe that providence can announce itself in silly ways sometimes. It was just after midnight when I pushed that button. I feel lucky today.