November 25, 2019

A Short Ride in a Fast Machine

There’s a dream I’ve had repeatedly in my life, including quite recently. In this dream, I am driving down a long, remote West Texas road at high speed, with no other cars around me. I’m going fast, in that way you hurtle forward on a desert highway when the perspective tricks you into picking what feels like leisurely pace until you look down and you’re doing ninety miles per hour. The sun is setting, the sky exploding in reds and oranges and a deepening purple.

Suddenly, without warning or drama, the wheel comes off in my hand. I’m holding it, gripped with panic, as the car continues down the road. I hit the brakes but of course they do nothing. In my dream, I know they’ll be unresponsive before I even touch my foot to the pedal. The car rockets down the road, still following its straight line, but with no indication of what’s to come. That’s my dream, and it’s almost embarrassingly transparent, but then I guess my dreams have never been subtle.

The past few weeks have followed a disquieting theme. Last month, one of my very best friends from Interlochen died, out of the blue on the other side of the world. He was young, forty-five, an esteemed musician who was apparently universally beloved. He was handsome and fit, he looked like Captain America, for fuck's sake, and in a horrible instant his heart, that most unreliable of organs, turned on him, and he was gone. Just like that. His sudden death was inexplicable at the time. It remains so today.

Last week, a friend from high school was also suddenly taken, also by an uncooperative and unforgiving heart. And last night I learned that the first band director to ever hire me as a low brass teacher back when I was in college died over the weekend. I guess I’m at the age now where I have more funerals than weddings in my future. It’s not a trend I’m enjoying.

Through it all, I live.

Tomorrow is my birthday. I’ll be fifty-two, assuming I make it through the rest of the day today. (I like my chances.) Fifty-two is an age my poor wretched father never got to be, and honestly, there were times this past year when I felt like I might miss out as well. But I’m here. I live. My own problematic heart keeps showing up for work and powering me through. Every morning I get out of the shower and catch a glimpse of myself in the mirror, with this ugly scar that’s much less daunting than before, but which still tells a story I’m not sure I understand--not after losing my friend. How is he gone and I’m still here? I’m not sure it feels unfair, exactly. It just doesn’t seem to make sense.

I started running a few months ago, with the encouragement of someone who is entirely uninterested in attending my funeral. I never thought I’d be a runner, and to be clear, I’m a terrible one. I lurch forward like the undead, slowly and gracelessly, and I only emanate real joy when I collapse at the end. But I finished a 5k in September and am planning on more. Every time I step on the road, it feels like both an encouragement to my potentially murderous heart, and a defiant gesture. Come on, motherfucker. We’re doing this.


The past nine months (has it really been that long?) have felt as chaotic as any point in my life. And yet, I’m not sure I feel like the wheel has come off in my hands, not exactly. I don’t know, maybe it has, but with the possibility that veering off the road might lead to something surprising and fulfilling and not just a fiery death. It’s certainly true that the wheel hasn’t just come off in my hands. I wrenched it from its place, with purpose and selfish abandon. If I do hurtle off a cliff, I have no one to blame but myself.

Through it all, the primary thing in my life that has given me purpose remains the most important part for me, and it’s also the most chaotic. Schuyler remains, and she moves forward into a future that is now very much her present. If my future is unsure, if it’s to be glorious or a cautionary tale, a lengthy journey or a short ride in a fast machine, that life is always going to have her at the center of it all for me. And that’s something I draw a great deal of comfort from.

Schuyler turns twenty years old next month. Stop for a moment and consider the unlikely sound of those words. Some of you have been reading since before my book and even before her diagnosis, all the way back to the beginning. You’ve been reading this story for twenty years now. I assume you’re starting to feel some aches and pains in your bones now, too.



After ending her internship and briefly working at a hobby store in a position that turned out to be an almost cliched example of what disability employment looks like to far too many people, Schuyler interviewed at and was immediately hired by a place called Kidzania. Follow that link, and imagine a place where kids 14 and younger get to explore their possible futures in the most over-the-top and ridiculously fun way possible. It’s as if Willy Wonka changed jobs and became a career guidance counselor.

Schuyler moves through this new world with a skill and a grace I frankly worried she might not ever possess, to my deep shame. She communicates verbally now with a clarity that belies the years she spent modeling with speech tech and working with speech language pathologists. She makes choices that are good ones; smart ones. At Kidzania, it was her suggestion that they spell her name “Skylar” on her badge so that the little kids she works with will have an easier time with it. Most of all, she’s handling some tough family stuff with maturity.

As I told her last night, I always wondered about the adult she would one day become. And she has turned out to be exactly the young woman I always hoped she would be.

The future is as uncertain as it’s ever been, for me and for Schuyler and for the people we love around us. But I’m going to dare to hope that it’s going to be okay. I’m believing in that, and willing it with all the energy I possess to be so.


July 31, 2019

Sixteen Years of Monster Life

Sixteen years ago today, everything changed. I mean, nothing changed, but everything changed. 

Schuyler was diagnosed with polymicrogyria on this day in 2003.

I think back to that day sometimes, a day that I described in the prologue to my book. In a lot of ways, it marked an end to the person I was at the time, probably a lot more fun but also more selfish and seriously lacking in self-reflection. It also began my transition to the person I am now: smarter, more sensitive to the people around me, more socially aware and a stronger advocate, but also more cynical, more curmudgeonly, a bit of a scold and a wet blanket, and like every single special needs parent I know, poor (the only special needs parents who have a little money are the ones that started off with a LOT of money) and tired. Face more lined, body more worn, bank account less robust. 

Disability parenting is rewarding, and I wouldn’t trade my life with Schuyler for anything. But it puts miles on you, and they are city miles at that.

I’m writing about how that day changed me because mine is the story I can tell. What did it mean for Schuyler? She doesn’t remember it, of course. She was three years old, after all. Her little monster has been with her from birth and before, of course, but it’s also been a known adversary for as long as she can remember. For Schuyler, an accurate diagnosis meant a corrected and appropriate course set for her future. School, medical evaluation and treatment, therapy, life planning, all of this began in earnest with that diagnosis. For her, it was an entirely good thing.

And for me? That’s more complicated, I guess. That day made things harder in my life, it took away options for a narrative of success that our society values and that I would have valued as well, and it broke my fucking heart right in two. That break healed, but god, the scars it left.

New Haven, CT (August 2003)

But Schuyler’s diagnosis made me a better father. It unlocked a level of empathy that I’d shamefully kept closed for most of my younger, stupid life. Because she was never going to talk like everyone else, I became a good listener, and a devoted and skilled interpreter of her odd but beautiful way of speaking. I became sadder, but I also learned to appreciate real, authentic joy. I learned that the world is a hard place for vulnerable people, but it’s also richer and more beautiful than I ever imagined at a cursory glance.

And I learned how to write, and maybe helped some people.

Would I change anything? It’s tempting to say that if I had the power to change Schuyler’s development in utero and let her have the brain she was supposed to have and the life she could have had from that, then yes, I would absolutely change that. I know that’s not the accepted disability advocate position to take, but I’m just going to have to be honest and say that I don’t care much about getting that right every time. If I could change that for her, I might. That’s just the honest truth. Schuyler was robbed, and I’ll never ever be entirely okay with that.

But having that power taken off the table, would I do things differently? Would I surround Schuyler with different people and explore different paths? Yeah, I would. But I also wouldn’t trade one moment, not a single second, fighting for her and stepping on toes and most of all immersing myself in the world of Schuyler.

If I could do it again, I’d spend more time with her. We’d watch more monster movies, we’d eat more ice cream (sorry, doctors), we’d travel more, see more places, breathe more country air, visit more museums, attend more concerts, make more friends, love more people, pet more dogs, read more books, do more THINGS.

Funny thing about that list, though. We can still do all that.

New Haven, CT (August 2003)

March 9, 2019

Three Weeks Broken

Here’s a fun fact that I just recently learned. When they (the people who make up such things, almost certainly with a clipboard in hand) determine survival rates for people who survive procedures such as open heart surgery, they don’t just count those who made it off the table and back to their rooms. For some major categories, they actually measure the rate of survival for thirty days, beginning with the surgery and ending with the cake decorated with “ONE MONTH DEATH-FREE, WOO!” in heart-healthy icing on top.

So this is perhaps a bit premature. Watch for a posthumous “edited to add: Oops, never mind, yikes…” But for now, tonight, three weeks and a couple of days after I voluntarily allowed someone to take a little buzzy saw to my sternum and open me up like a piƱata, I’m going to risk the jinx.

I’m still alive.

But Jesus Howard Christ, do I still hurt.



What did you do for Valentine’s Day? Something nice? Something boozy? Something resentful and Netflix-y?

I showed up at a fancy hospital with a cute but gigantic heart logo on the outside of the building and a serious commitment to branding (the restaurant is the Heart Rock Cafe, I kid you not) and had me some heart surgery.

As it turned out, I got the deluxe package, the quadruple bypass. (Is there a quintuple version? Did I get ripped off?) This sounds both a little badass and vaguely awful, like something you get if you are in an emergency situation. Or, you know, if you are extremely elderly.

But the truth is, the surgeon got in, started poking around at my shitty, shitty heart and decided that it looked better than he expected, but since he was already in, what the hell? Just as easy to do them all, right? So it was perhaps less “oh my god, quadruple bypass for the old fart!” and maybe more “while I was under the hood, I swapped out your plugs and changed the wiper fluid”.

The plan was that I would wake up slowly, and by the time I was actually conscious, the tube would be removed from my throat and I would miss the part that everyone says is the worst.

Yeah, not so much.

When I came to at about 1:30 in the morning, it was all at once, so dramatically that I scared the nurse and started choking. She was so flustered that she began shouting at me, trying to tell me that everything was fine and I needed to breathe normally. I slowed my panic, and for what I can say with certainty was the worst forty-five minutes of my life, I desperately tried to keep breathing and not allow this horrible alarm to go off again. The alarm signaled that I was fucking up the simple act of breathing, which was not what medical professionals categorize as “encouraging”.

Finally, they removed the tube, which was exactly as horrible and discombobulating as I’d been told it would be. I lay there breathing on my own, aware that I was in a body that felt like someone else’s and apparently had a large invisible cow sitting on its shotgun-ventilated chest. The nurse asked me to say my name. I tried to say “Rob” but nothing beyond a whisper escape my lips. She gave me the teeniest of tiny sips of water from a straw.

“Can you say something?” asked the nurse kindly, her hand touching my face. I turned very slightly and looked at her.

“Motherfucker,” I croaked.



So when you imagine recovering from heart surgery, you might imagine being in a hospital bed for a week or two. You would be mistaken! As soon as the morning shift really got going, I was moved from my bed to a big comfy recliner and never really went back. (Indeed, three weeks later, I still haven’t spent more than five or ten minutes in a bed. Lying down is still a little... ouchy.)

And it was only a little later that same morning when an occupational therapist, who was the nicest, sweetest, gentlest Nazi dominatrix torturer I’ve ever met, got me out of that chair and had me drag my poor, broken body for a grand total of 200 feet around the floor of the hospital. A couple of times a day we repeated this, only once with a walker and always a little further than before.

At first, it was ridiculously pathetic. I had zero stamina, very little breath capacity, shaky balance and a giant hole in my body that hadn’t been there before. The first time I was out, a gentleman who must have been well into his eighties breezed past me with his OT, cheerfully encouraging me as he whisked by. I was too tired and unsteady with my walker to give him the finger, which is probably for the best.


I went in on a Thursday, and was released on Monday. They give you the little wheelchair ride to the car when you’re released from the hospital, and while I know it’s a liability thing, I always imagine it as a ceremonial rite of passage. But this time, it was entirely necessary. As I wearily got into the car, carrying the heart pillow the hospital had given me and the fun little stuffed heart that I’d given Schuyler but which she’d almost immediately loaned right back to me, I felt entirely ill-equipped to face the world outside the hospital.

And then we drove away. Just like that.



I’d tell you about the past three weeks at home, except that pretty much describes it. I can tell you that the view from my own recliner doesn’t change much. I can attest to the fact that Wayne Brady and Drew Carrey are both excellent hosts of Let’s Make a Deal and The Price is Right, and that I never get tired of singing along with the tuba/trombone combo when someone fails to win their prize. If you’ve ever looked at those motorized carts at the grocery store and wondered if they are as much fun to drive as they look, I’m here to tell you that yeah, they kind of are.


And if you have Frontier cable, you should know that it does the same sloth-shaming that Netflix does, where a message pops up making sure there’s still a human being watching the programming.

Don’t judge me, tv. I have a hole in me. You’re supposed to fill it.



So let’s talk about that hole.

I’ll just say it. It’s large. It’s large, and for some reason my incision is weirdly jagged at the ends, like they didn’t make the hole big enough and had to open it up some more. The idea that this hole might have been insufficient for whatever they were doing is astounding to me. It’s roughly the size I would imagine you’d require to install a microwave.

I want to talk about my body, because it’s the thing that’s in the air but I think most people don’t want to talk about. Which is a pity, because I know people worry about the changes to their bodies after a big surgery like this, and we’re told that the differences will be negligible. And in a few months, that may very well be true.

But now? Three weeks out? I’m in a body that looks extreme. I get out of the shower and I see it in the mirror, and the sight never fails to catch me up just a little.

My skin is pale, almost alarmingly so, and I have no upper body strength or muscle structure at all. At the same time, I still have a little of the weight I gained from surgery, although most of that was fluid and it’s pretty much gone now. (Fun fact: they give you so much in the way of fluids that you actually gain weight, and kind of a lot, in the hospital. Insult to injury right there.) So I look like a skinny, almost emaciated fat guy. That is, as you might imagine, disconcerting.

And I have holes. In addition to the giant vertical incision, which looks as nasty as you imagine, there are holes from where drainage tubes were inserted during the surgery. They don’t appear to be in any hurry to go away. I have random smaller holes from various ports and IVs and such. Some I have no idea where they’re from, honestly. And my right leg has an ugly incision from where they took a vein for my shitty, shitty heart. Additionally, much of that same leg is purple, and I mean seriously purple. Like, Grimace purple.

I look like a shark attack victim, perhaps one that washed up on the beach a few days later.

As of today, three weeks after surgery for a condition which I never felt or was physically aware of at any time (except possible a little fatigue towards the end), I still look like a wreck. I do not look or feel like I went in sick and came out better. Not by a long shot. I feel like I got tricked.

I look like a wreck, my chest still hurts rather a lot, my breaths still feel shallow, and any time I cough or sneeze, it feels, with zero exaggeration, like I’m getting stabbed with a big serial killer knife, right in the chest. Three weeks later, I still clutch that big heart pillow to my chest when I cough and try to ignore the sensation that my chest is going to burst open and my guts are going to explode forth, like that scene from Alien.

This is, by the way, apparently a common sensation with heart surgery survivors, of whose numbers I get to count myself in a few short days.

So yeah. I’m not going to lie. This fucking sucks. And I know it beats being dead, except not entirely, not always, not at every single moment. And that’s the other thing they might not tell you ahead of time.

Being under anesthesia for that many hours carries a risk. Because it takes a while, sometimes days or even weeks, for the effects of that anesthesia to completely leave your body. And that’s FINE. Better too much than too little where that’s concerned. But with the anesthesia, and the painkillers, which are mighty, come the risk of a real deep black depression settling into your bones. Unless it was already there, in which case it gets a shiny new crown and gets to walk around like it owns the place.

It’s important to talk about this, and no one did before my surgery. I wish we had. I really wish we had.



One reason I wanted to do this little wrap up, even though it’s a little ahead of schedule (me not being an actual survivor yet, for example), is that I realized the other day that there had been an important (if subtle) shift in my feelings.

I didn’t feel like I was going to die, not like before.

When I say that, I don’t mean it like “Man, I was in so much pain, I felt like I was going to DIE!” I mean literally, ever since the moment I woke up and freaked out under intubation, all the way up to the present, I have felt like I’m going to die. I have felt broken, wildly so. I have felt depressed, more than I let anyone know. I feel closer to the earth. At night I am keenly aware of the sound of my own heart beating, so much so that I need to mask it with music, because I get caught up with listening to it, which honestly means listening and waiting to hear it stop.

I have felt a very real shadow hanging over me. It feels visceral, it feels inevitable, and God forgive me, it has on occasion felt frankly welcome.

And that’s the hard thing no one talks about. I have felt like I was going to die, and I have been okay with that much of the time. And neither of those are probably optimal.

Today, I feel a little less like that. I have felt less of it for two days, so I guess it’s okay to talk about it now. The thought that I could live long enough to turn 52 or to vote for the next president or see the next Star Wars movie or take Schuyler to the beach this summer or go back to work or do anything in even the very near future has been simply unthinkable to me.

The future has been a closed door for me for three weeks. Today it feels like maybe that’s not true, and while it’s a subtle and perhaps temporary change, it’s enough for now. It’s not necessarily light, but it’s not darkness, either.



As I sit writing this, my tv is tuned to a channel that just plays classical music all day. I love this channel; much of the time it’s playing stuff I’ve never heard before. But tonight, they’ve opted for one of my favorites, Beethoven’s 9th Symphony. Such a cliche, I know, but whatever. It’s overplayed because it’s great, maybe the greatest work of musical art ever composed.

It’s full of pathos and anger and tenderness, of the joy of living and the specter of death. It’s hopeful, almost ridiculously so, but it’s not an unearned joy. Beethoven makes you work to get there. You might not make it through the first three movements. A lot of listeners don’t. But if you do, if you stick around for that unashamedly joyous chorus, you will be forever changed.

I will confess without shame, I stopped writing to sob when the Ode to Joy burst forth. I haven’t cried since the surgery, except for involuntary tears while I was intubated, so I guess I was due.



And tomorrow, it all begins again. I have a rehearsal for the brass band in which I play trombone and ophicleide, and it will be my first time back to music in three weeks, aside from playing a little just to make sure I still could. Another week at home and then hopefully I will be cleared to return to work. The glue and stitches from my horrible wound are beginning to fall off on their own, and they are revealing a scar that is perhaps a little less severe than I feared.

And so whatever is next is next. I’ll take this for what it is, for as long as it gives me with the little girl I love and the universe I both resent and marvel at, Melville’s grand rough world that I’m not quite finished with. Unless it turns out I am, in which case, I think I’m okay with that, too. I tried my best to make a difference, and I’ll keep doing so if given the opportunity.

“You millions, I embrace you. This kiss is for all the world.”



January 15, 2019

Just One of Those Things

Last week I had a heart catheter procedure, to measure the amount of blockage in my shitty, shitty heart and possible put in a stent or two. Put them in, send me home, back to work in a day or two, right?

That’s not what ultimately happened. No, I’m going to have open heart bypass surgery. Well. I didn’t see that coming.

Tomorrow afternoon, I meet my heart surgeon, hopefully to get this thing scheduled. I’ll meet the man who will literally have my life in my hands. So, you know, big day.

I’ll admit it, I’ve been in a weird, unpleasant emotional place ever since I found out where this whole thing is heading. I’ve been thinking about the future but also trying to shake this sense of dread, this sense that the future might not be a thing for me. Like maybe I prematurely celebrated outliving my father, who has become a very unquiet ghost indeed. I want to believe in that future, more than anything. And I know this procedure has like a 95% survival rate, but as one person recently pointed out, someone’s got to be in that five percent.

 I’ve had this guy sitting on my desk in my office for months; he’s probably my favorite monster. Warner Bros. calls him Gossamer, but once Schuyler pointed out that he looked like an angry heart, he became my representative Shitty Heart Monster. My feelings about him are also complicated; he’s trying to hurt me, but I obviously have high hopes for him and his future, which is my future, too.

I’m giving him to Schuyler when I go in for my surgery, and she’ll take care of him until I come out. It’ll be easy, I keep telling myself. A trip to the moon on gossamer wings, as Cole Porter said.

 We shall see.