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 piñata, I’m going to risk the jinx.

I’m still alive.

But Jesus Howard Christ, do I still hurt.

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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.

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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.”

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.

Matters of the Heart

So I guess I’m going to talk about this thing, which has nothing to do with disability advocacy or Schuyler, except of course it does, because those are the parts of my life that I couldn’t separate from the rest even if I wanted to, and I very much don’t.

Last March, as you might remember, I had a hospital scare that ended in me getting my own health regimen back on track. That day sucked, to be sure, and it was followed by plenty more that were also pretty awful. But it ended up for the best, I suppose. I got better and my health improved to a point where it was more solid than it’s been in years. I ended up traveling with Schuyler to extraordinary places and had equally extraordinary experiences. And to stay on top of my health, I’ve been going to the doctor regularly, because that’s what normal people do, I guess. So I hear.

Things were going well, right up until early October when my doctor detected a faint heart murmur that wasn’t there before. He wasn’t overly concerned, so I took his lead and decided not to be all that concerned, either. He referred me to a cardiologist, just to be thorough, and a few weeks later, me and my mumbling heart took a stress test. When no red lights or alarms went off and no one called me back for a few days, I assumed I got an A. Which was cool; I didn’t even study.

About a week later, my cardiologist called me out of the blue, late one evening. According to my test results, at some point in the past few months, I apparently suffered a heart attack.

A heart attack. 

As they say in the movies, I didn’t feel a thing.

I never felt any crushing chest pain or shooting agony in my arm or cold sweats or barfing or any of that. I didn’t fall to my knees, one hand clutching at my chest, the other reaching to the sky. If I noticed anything at all, I certainly don’t remember it. Maybe I thought I had gas. Perhaps I just farted and went on with my life, unaware that my shitty, shitty heart just said, “Fuck you, Rob” and silently tried to murder me.

It failed, of course. I am STRONG like BOOL.

So. This is my new reality. I am a guy who survived a heart attack and didn’t even know it. I mean, that’s worth a few badass points, right? Just a couple? I don’t know a lot yet. I have an echocardiogram in a few days, and a heart cath procedure in January, which seems like a long time to leave me at the mercy of my murderous heart, but I’m also taking that as a sign that my cardiologist doesn’t think I’m in mortal peril. So I’ve got that going for me, which is nice.

I honestly don’t know how to feel about this. On one hand, I feel absolutely fine. Or I did. Naturally, now that I know, every single little pain or twitch sets off alarms. Tightness in my chest? Doesn’t matter if I was reaching into the back seat of my car to get something. Clearly, it’s the Big One. Random aches and pains? It’s the baby Jesus taking me home. Today I felt vaguely unwell, so I once again looked up the symptoms of a silent heart attack. (Apparently mine was of this polite variety.) Just so you know, those symptoms are pretty much identical with “stuff that happens to you when you are older than forty”. I read the list and thought “wow, I’ve been having this heart attack for ten years. Wicked.”

But behind all my joking (which apparently amuses no one except me, but whatever; if I keel over dead tomorrow, I’d like my final post on social media to be both entertaining and creepily prescient), there’s an undeniable truth. I’m pretty sure I already knew this, but as it turns out, I’m mortal.

For parents of people with disabilities, that mortality feels like it comes with a heavy price. It caries fear, not just of death but of the chaos it leaves behind. That brooding fear is inevitably accompanied by guilt for abandoning someone who needs me and will likely always need me, even after she no longer has me.

And that weighs on me.

Schuyler and I have been talking about this, because I don’t believe in hiding the hard stuff from her, not one bit. She sees through my dumb jokes and cavalier attitude. She knows what could happen, and she knows she’s not ready for that world. She might actually be wrong about that, which is a thought that eases my worry a little.

But we’re not ready to be done with each other. We have adventures left to embark upon. We need more time, we have beautiful, risky ventures awaiting us. I’m not ready for that to be done.

A few days after getting that fun phone call, Schuyler and I grabbed my tiny euphonium and drove a couple of hours away to join a bunch of other low brass musicians in playing Tuba Christmas in Wichita Falls. The next day we did it again here in our own town, and we’re going to hit two more next week, including Christmas Eve in Dallas. I’m still in love with being a big dumb nerd and playing my horn with other big dumb nerds. I still want to get a tuba before I die. (I even found a used one super cheap that I love, if anyone feels like throwing their money away to grant the dying wish of a feeble old man trying desperately not to go into the light, coff coff…) I actually got paid the other day for playing the ophicleide in public for people who weren’t even being held against their will, which isn’t nothing. I’ve got shit to do.

And I have a remarkable young lady to do those things with, and more. I have someone I need to walk down the aisle one day. I have unborn grandchildren to meet. I have glorious risks to take and a rowdy, rough life to live. I’m not loving being faced with the tangible suggestion that I could run out of time far earlier than I’d planned. My father died from a crap heart at fifty-one, the same age I am now. I’m not a big fan of repeating history.

If I am out of time, perhaps this is how I’d like to be remembered, in a photo taken last weekend by Schuyler, my biggest fan and the engine that runs my faulty but doggedly determined old heart. Just a dork with a really dumb hat and a tiny euphonium. I could do much worse.

So it goes.

I haven't written much about Las Vegas. Part of the reason is that it turns out Schuyler and I have a random weird association with the event. Nothing exceptionally personal, but one of those “goose walked over my grave” kinds of things.

Almost eight years ago, two of our dearest friends got married in Vegas, and since it was on Schuyler’s tenth birthday and they adore their goddaughter, they turned their reception into a birthday party for her as well, with a beautiful cake and some of the people she loves most. The photos I took of Schuyler that evening are among my favorites ever, as are the memories we made that day. The ceremony was held in a beautiful chapel in the Mandalay Bay Hotel. The reception? In a very fancy suite on the 32nd floor.

Yeah, that one.

So there’s some extra feelings about this tragedy, but not because I think there’s anything so grim in the world that it can automatically besmirch a perfect day just because of dumb coincidence. But it does mean that when reporters describe the scene that took place inside that room, I can see it vividly in my head.

I dreamed last night that both events were happening at the same time, with love and laughter and cake and most of all people I love, including a little girl in a pink plastic birthday tiara who happens to be the whole world to me, but also with a dark figure skulking behind everyone, moving from window to window. I was the only one who could see him, but for some reason I couldn’t tell anyone. That was an exceptional shitty dream.

So yeah. That fun fact has tied my tongue a little. More than that, though, I simply don't have much left to contribute. I feel like I said what I needed to say after Sandy Hook, but as others have pointed out, apparently we as a society have decided that dead six-year-olds are the price we're willing to pay in order to make sure gun fetishists keep their unfettered access to weapons of mass murder. Who am I to tell society they're wrong?

A couple of weeks ago, there was a shooting in Plano, blocks from my apartment, that ended up being the worst mass shooting in the US in 2017 so far. I'm shocked that it took this long to lose the title, honestly. I drive by it a few times a week, including this morning, and I watch it slowly turn from a crime scene surrounded by police cars and news vans to a memorial site covered with wreaths and teddy bears to what it is now, a sad and darkened house with one simple cross in the yard. Soon it'll just be property for sale. And soon Vegas will go back to being a place people go to party and gamble and forget how fucked up the world is, even in the shadow of Mandalay Bay.

And we'll forget, mostly. Not because we don't care, but because there'll be somewhere else stained in blood on our screens. New faces, new frenzied chyrons, new central casting terrorist bad guys (if they are people of color) or lone wolves with mental illness (if they're white). This is a show that never gets cancelled.

There’ll always be another one, and eventually a worse one, because we bought this scenario with the blood of children. And if there’s one thing this nation appreciates, it’s how to get our money’s worth. If you can convince yourself not to care about strangers who die, suddenly our big loud gun hobby just became a bargain. We like bargains in this country.

And so it goes. See you at the next one.

Lulu

Today we said goodbye to a member of our family. Today, we lost sweet, sweet Lulu.

She joined our little family fourteen years ago, at a difficult time for us. In the fateful summer of 2003, in the quest to discover the reason for her wordlessness, Schuyler underwent a very traumatic MRI, one where she had to be anesthetized through an IV in the back of her hand. It was awful, and it left us all feeling exhausted and emotionally drained. “You know what?” I said a day or two later. “We’re going to get a motherfucking puppy!”

And that’s how Lulu came to join us.

She was the smallest in her litter, the only black pug in the bunch. She was scrappy, but she had the buggiest eyes and the smushiest face. She was the pug-iest pug in the litter, and had the sweetest disposition. I knew as soon as I saw her that she was the dog for me.

And she always was.

Lulu travelled the streets of New Haven, Connecticut with little Schuyler in her Radio Flyer wagon, and then moved with us to Austin and later to Plano. She watched Schuyler grow from a toddler to a young woman. Lulu bonded deeply with our late Boston terrier Petey, even having a litter of ridiculously cute and rowdy puppies with him about ten years ago, and she endured the addition of Max and his wild shenanigans. A few weeks ago, when we brought our new puppy home, she patiently endured Oscar’s puppy antics, too. She was subjected to endless nicknames, from Samurai Housefly to George Squashington to Fatbug to The Smash. One Halloween, she let us dress her like the Devil with no complaint. Lulu was patient, and she was game for anything. For fourteen years, she has been a constant companion, snorting and farting her gentle way through our lives.

A few days ago, she stopped eating. She also became incontinent and lethargic. When we took her to the vet this morning, we were looking for an answer, a way to restore her to her tail-wagging, happy self. (When Lulu was especially pleased with something, she let one fang stick out of her little sea monster mouth.) We didn’t think we would be leaving without a dog.

The vet gave us some options, expensive surgery that might make sense for a younger dog. But when he gently suggested that this option, and its long recovery, might “buy a little more time”, we knew what he meant. It would buy US more time. Months of pain and discomfort for Lulu, so that we could have more time with her. Our quality of life, not hers. In the end, it was an incredibly difficult choice, and at the same time, a really clear one. Letting her go was the right thing to do.

And yet, all day I’ve felt an unreasonable, impossible impulse. I want to go back to the vet, to hand them our receipt and tell them that I’ve changed my mind, that I’m selfish and cruel but I want more time, one more day even. I want to undo this thing we all did.

I want my dog back. I want my dear friend.

(As we sat waiting for the vet this morning, I took what ended up being my last photo of Lulu. I'm glad I did. For all her pain, she looked like her old self in the moment. She looked at me with love, and, I desperately hope, with forgiveness.)

Another Coda

Today at Support for Special Needs:

Excerpt: 

Her ultimate survival of her junior year is in large part due to the people who watch out for her, quietly and without drama, and who make it a little easier to put her on that bus in the morning and send her once more unto the breach, dear friends. Schuyler’s true friends have turned out to be the ones we didn’t see coming. There are the band directors who have watched out for her and striven to understand what makes her tick and to build a safe but unrestrictive space around her. There’s the assistant principal who has taken exactly ZERO of her nonsense but who has become her absolute greatest advocate on her school’s staff. Then there are the members of her percussion section who have pushed her but who also love her dearly, as they made crystal clear at a percussion party last weekend in a moment that most certainly did NOT make me cry, I have allergies, shut up. And there are the countless people who see her at school and like what they see and greet her every single time they see her. Walking the halls with Schuyler is like hanging out with the Fonz.

What she needs

I haven’t posted over here in a while, not exclusively. I’ve been engaged in a more professional weekly blogging gig at Support for Special Needs, and I’ll be back over there next week. This has been a little two week hiatus, albeit an unplanned one. I try not to get too insanely personal or profane over there, and in some ways a slightly more measured tone is probably good for me. When I’m over here, there’s no telling what I might say (balls), after all. I guess this has just sort of become my personal little sandbox now, and that’s kind of nice. (Asshole! Tits!)

I guess the primary reason I’ve taken a couple of weeks off from the other more professional site has been not a lack of experiences about which to write, but a persistent string of incidents that felt too personal to get paid to write about. Getting paid to vent feels a little weird, although I’ve certainly done it before, I guess. Without digging to deep into the details, if there’s been a running theme over the past couple of weeks, and maybe a little longer, it might simply be this. Schuyler has been used very badly by a lot of people. Those include some shitty little friends-who-aren’t-such-great-friends-after-all, a boy who made what can only really be described as a sexually harassing remark to her in his very public place of employment (and the thunder is still being called down from the peak of Mount Daddy-o for that one), and the earnest teacher who believes she truly understands Schuyler but who very, very much does not.

Schuyler has been used badly, and she has stumbled a bit as a result. I know we have a responsibility to discipline her when she makes poor choices, and we have, very much so. But I can’t help but notice that her shitty little friends haven’t suffered any consequences for their actions, which included stealing Schuyler’s iPad and sending horrible messages to a really nice girl in her name. The boy who made a horrible remark to her is protected to a certain degree by his own disability, and I’m not opposed to that, of course. But he keeps his job with minimal consequences, and the school won’t even talk to him about the incident because it didn’t happen on campus so their hands have the appearance of being clean. And a teacher who was supposed to help minimize Schuyler’s social anxiety and awkwardness has instead attached booster rockets to them and sent them hurtling skyward. Schuyler has been left to pick up a lot of pieces this week. It must be said that she helped scatter them, to be sure. But still.

I’ve said before that Schuyler needs overbelievers in her life, and that’s never been more true than now. She’s got a few. Julie and I, certainly. We’ve got an IEP meeting next week, and I think it might be an ugly one, but that’s okay, because it’s always worth the ugly if that’s the last advocacy option. We’re ready to release the Kraken. We’re ready for a whole Kraken rodeo if necessary. (Yippee-ki-yay, motherfuckers.) Schuyler’s godparents are always prepared to listen to her, and give her good advice without letting her get away with any shit, which she will absolutely try to do because she’s seventeen, and because she carries my buggo DNA. And she’s got a few adult friends out there watching out for her.

But Schuyler needs more overbelievers. She needs them at school most of all, where they are in short supply outside of band. Just yesterday, she found out that she was rejected for the campus club that she wanted to join, one whose members help kids with disabilities. The reasons mostly revolved around her difficulties with communications and independence, the very life skills she’d be likely to hone if she were accepted. Schuyler’s had a rough year, and roughest of all has been when she’s made mistakes and no one has been there to guide her into better waters. Schuyler’s had plenty of opportunities for tough love life lessons this year. I’m tired of watching her endure them. I’m inclined to let her breathe a little, but that opportunity will apparently have to wait a little longer.

My greatest frustration with Schuyler’s current school (outside of band, where she is well watched over) springs from how they often seem like they’re in a hurry to be done with her. I can almost hear them counting the days. But honestly, I might be counting, too.

This morning, I’m sitting in the stands watching Schuyler play baseball with her Miracle League team. If you want to see Schuyler in the wild, this is a good place to observe her. Schuyler loves Miracle League, not because she’s an especially gifted player (although she does make a couple of pretty sweet plays today, I’m happy to report), but rather because here is where she feels free to cut loose. Her big laugh is easily heard from the stands. She dances to everyone’s walkup music, she jokes around with every player around her, and she gives out hugs and high fives to players on the other team as they visit her at third base. Seeing Schuyler like this is to be reminded that she’s got the biggest heart of any person I’ve ever met, and likely that you’ll ever meet, too. Here on this playing field, she’s not a collection of expectations or evaluations. She’s not disappointing to anyone who expects her to step into the holes they’ve dug for her. At this moment on a spring Saturday morning, with her backwards-turned cap and her bright pink socks and that atomic smile, Schuyler is all potential. She is as deserving of belief as she has ever been.

I love this young lady, this little girl who isn’t a little girl, and yet kind of is. My patience is being tried, but not by her. I don’t let her get away with much; I’m probably a lot stricter of a father than you imagine me to be. But she’s at a crossroads right now. She needs grace, and she needs encouragement. She needs to be reminded of her strengths, because she has so many. She needs a more empathetic world than the one we currently live in.

Schuyler needs more overbelievers, and she needs them rather a lot.

Monster Island

Today at Support for Special Needs:

Excerpt: 

I’m not sure where I’m going with this post, because I’m not sure what the takeaway is. Schuyler had a good time, except when she very much didn’t. Her social anxiety only hit after her seizure, but boy did it land hard after that. She laughed hard most of the time, including once so enthusiastically that we literally heard her from the other side of the resort. But she also cried harder than I can really remember her crying for many years. She was probably happy 80% of the trip, but that other 20% had real teeth and claws. Schuyler adored the beach and looked hard for sea creatures on the sand. But in the end, it was a very familiar monster that found her.

From the bottom of the sea

Today at Support for Special Needs:

Excerpt: 

Schuyler's world just became much, much larger, and as it turns out, that scares her as much as it scares me. Maybe more, because the world she sees and experiences isn't quite the same as that in which the rest of us live. She's got a lot more to process now, and this week, I think it became a bit too much. Throw some errant electricity into her brain, and a storm erupts. She rides it out as best as she can, and we with her. This one was bad, but there'll be no shipwreck this time.

The New Danger of Difference

Today at Support for Special Needs:

Excerpt: 

When Schuyler gets up tomorrow and faces her weary and deeply disheartened father, she will be told that what's wrong with America isn't those like her who are different, or who insist on their humanity without limitations. What's wrong with America doesn't belong to her.

The Watcher

This morning at Support for Special Needs:

Excerpt:  

There's a lot more for Schuyler to unpack about this, some of it making zero sense at all. I'm not sure Schuyler entirely comprehends racism, except of course she understands being hated and abused or even just dismissed for being different, so I suspect racism's one she probably gets. It's hard to explain to her when she's probably safe and when she's not, because I don't know myself. Schuyler's white, she's a woman, and she has a disability. She'll probably be just fine in a way that is horribly unfair, until the day comes when she's very much NOT fine, also in a way that is horribly unfair. She has both privilege and disadvantage, neither of which is easy to explain to her.

The Very, Very Worst

This is Schuyler.

Schuyler is sixteen years old. She plays percussion in her high school band. Schuyler participates in Miracle League soccer and volunteers with Miracle League kids who play baseball, helping out with their practices and their games while wearing a Wonder Woman cap. She takes an art class and writes stories about dragons and monster armies and evil queens. She's a huge Star Wars fan and loves Rey the most, although she's got a soft spot in her heart for Sabine and Ahsoka, too. She vacillates between carefree atheism and curious agnosticism. Schuyler's ambition in life is to help others, particularly people with disabilities, those who have "little monsters like my own", as she puts it. The little monster of her own that she's referring to is the brain malformation called Polymicrogyria, which is the root of most of her struggles and will be for her entire life.

And at this stage of her life, the thing Schuyler wants more than anything in the world is close relationships. With friends, yes, but also more. Schuyler wants to date. She wants to find someone to share her life with, at least the life she's in right now. She can't tell you what that looks like, not even for sure if it's a boy or a girl she's searching for. She only knows that she wants to explore love, and one day soon, as much as it makes me twitchy to say it, she'll want to explore physical relationships as well. Finding that in her life, breaking her loneliness and leaving her too-long lingering childhood behind, these are of paramount importance to her, in ways that can be heartbreaking to watch.

So here's my question to you, reader. Do you think that idea is gross? Do you find it ridiculous to even imagine? Do you find the idea of Schuyler and young people like her with intellectual disabilities having physical and romantic relationships to be something that just cries out to be a punchline, not just of a joke but of a whole comedy routine?

Comedian Gary Owen does.

Apparently BET and Showtime do, too, since they've invested in giving his act, including his disability-related material, a home in their television lineup.

I'm not going to embed his routine in this post; the thought of his face anywhere near my daughter's makes me want to set things on fire. But I will link to the excerpt on YouTube. I encourage you to go watch it, because I want you to understand how much is at stake here, and exactly how bad it can be for people with intellectual disabilities in our popular culture. But if you choose not to go watch it, I'll understand that, too. I watched it halfway through once and then finally got the stomach to see the whole thing earlier today. That's enough for me; I'll never watch it again. It really is the very, very worst.

If you're not inclined to see it for yourself, I'll give you the salient points.

1) Gary Owen tells a story about his cousin, who is, as he says, "retarded". If you miss him sharing this with you, don't worry. He repeats this information, and that word, many times throughout his comedy bit.

2) The story involves what he believes is the unbelievable revelation that his cousin is sexually active. Even more shocking to Mr. Owen is the fact that her partner also has an intellectual disability. This conceit forms the core of his comedy routine. Two people with intellectual disabilities have a sexual relationship. Isn't that disgusting? Isn't it hilarious?

3) To illustrate this point, he impersonates what he imagines his cousin and her partner's behavior might have been like. Not just the courting, but the actual act of sex.

4) If you're imagining this to be the most awful thing you're likely to see someone perform in mainstream pop culture, I'm going to warn you. It's probably even worse than you're imagining.

5) All of this is okay, Mr. Owen assures us, because it's his cousin. That familial relationship gives him license to make her the butt of his comedy routine, to insist that her sex life must be an awkward joke, and to impersonate both her and her partner in the act. Also, and this is very important, he claims to have volunteered for Special Olympics for ten years on her behalf. (He notes his sacrifice in this regard, since, you know, Special Olympians run funny. He had to endure that, you see.) So, you know, he's one of us. He has license.

When he began to get some negative reaction to his material, shockingly so since he sees himself as such a beloved member of the disability family, he responded by posting a link to an interview with comedian Louis CK, in which Louis says, "Saying that something is too terrible to joke about, that's like saying a disease is too terrible to try to cure. That's what you do with awful things, you joke about them. That's how you get through it."

What Gary Owen doesn't appear to understand is this: It's not his thing to get through. He doesn't have an intellectual disability. No one is suggesting that his life and his own sexuality is a disgusting idea worthy of about five minutes of cruel, grotesque jokes and impersonations. Joking about it doesn't help him deal with the pain because there is no pain for him. Only a target. The fact that he may or may not have worked with Special Olympics doesn't make it any better. It makes it exponentially worse. When he suggests, through the Louis CK quote, that intellectual disability is an "awful thing", he should know that in this case, the "awful thing" about their disability is in fact Gary Owen.

I don't know Gary Owen's comedy; like many who are becoming familiar with his body of work because of this particular comedy bit, I knew nothing about him until now. (Nothing like a first impression.) I can't say whether he's funny or smart, except on the evidence of this one routine, which would strongly suggest that he is neither.

But Gary Owen has figured something out that is fairly insightful, and he's using it to earn some cheap but loud laughs. Gary Owen knows that our society doesn't see people with intellectual disabilities as whole human beings, and subsequently many people find the idea of these people having sexual lives to be uncomfortable. Schuyler and her friends can be cute, and they can be inspiring, even. As long as they remain forever children, forever without adult agency, they are allowed a place in our society.

Beyond that, however, people with intellectual disabilities run into trouble. Having awareness of their own adult emotions and bodies, and enjoying the agency to engage in relationships and live sexually active lives, these are the things that human beings do. It's not something that children engage in, and to so many in our society, people with intellectual disabilities are forever children.

In his heart of hearts, I think Gary Owen understands that the targets of his grotesque humor deserve better. He makes excuses and tries to cover his own culpability with his past volunteerism. He knows that what he's doing is terribly, horribly wrong. But the tragedy and the danger of the matter is simply this: Gary Owen may know better, but judging from the howls of laughter in that video clip, his audience doesn't.

In the past, I've written about the use of the word "retarded" in pop culture, but this time, I wish that's all that was going in. If Gary Owen stood up and simply said, "Retards, what are you gonna do, am I right?", I don't think I would do much more than link on Facebook and say, "Hey, look at this asshole." Watching Owen's wretched comedy routine makes me ill, and it makes me angry. It hits so much deeper than other comedians have in the past because he's not just being cruel. He's not just making fun of young adults like Schuyler, calling them less.

Gary Owen is attacking the very idea that someone with an intellectual disability deserves to be a human being at all.

I'm not sure what I should do, and I'm certainly not sure what I think you should do, either. There's a change.org petition to get Showtime to remove this particular segment from his comedy special, which is a start, I guess. I don't think they'll do it; I'm not even sure they can, legally. Remarks he's making on his Facebook page suggest that Gary Owen has zero intention of trying to make any of this better, and his fans seem to be fiercely loyal. I'm not sure there's much to be done in winning hearts and minds.

But I do know this. I need to do something. I need to know that lots of people feel that same impulse. I need to make some noise. I need to shake some trees and kick some walls. I need to howl at the sky and grab people by the shoulders and tell them about this. I need to expend energy in trying to fix this unfixable problem, because my daughter deserves a full, rich, human life experience. She does, her friends do, and the adults they will all become deserve to have their humanity recognized.

Words matter. Media acceptance of what is, in this case, undeniably hate speech, this matters. It matters that executives at BET and Showtime watched that comedy bit and said, "Yeah, that's great stuff. Let's put our brand on that and sell it to our subscribers." It matters a very great deal that many, many people are okay with that choice.

Schuyler and people like her live complicated and difficult lives. People like Gary Owen make those lives much more complicated and much more difficult. If I could say one thing to Mr. Owen and to the people in that audience laughing so hard and to his online fans defending him, it would be this:

Please stop. Please, just fucking stop.

---

EDITED TO ADD: When I tried to explain the comedy routine to Schuyler (without actually showing it to her, because I'm not a monster), she was obviously pretty pissed off. She asked if she could make a video in response. I said yes. Well, of course I did.

Community Standards

This morning at Support for Special Needs:

Excerpt: 

Some of the different hats I wear in my life don't always compliment each other very well. Even though I hate the R Word with the zealotry of a late convert, I'm also a writer, and I don't take the cudgel against language without real hesitation. But as a writer, I have to accept that words have actual power, and when we use them, we have responsibility for the outcome. The concept of hate speech results from the acknowledgement that powerful things sometimes need to be checked. I'd prefer that in this particular case, the checks would be self-applied, and that simply basic humanity would lead you to look at a language containing approximately 1,025,110 words and pick one that didn't cause so much pain to a particularly vulnerable population. I'm not for banned language, as a rule. But I recognize that hate speech occupies a very particular place in our culture, and our response to it is especially important.

A Hard, Correct Answer

Today at Support for Special Needs:

Excerpt: 

When we talk about accessibility and inclusion, those aren't just buzzwords. And they're not just about school, either, although that can be hard to remember sometimes. For people like Schuyler, participating in our society can be shut down as soon as they exit the front door. I worry about Schuyler finding employment, but really, there are a lot of steps between here and there for which there aren't any easy answers. Transportation may be the most straightforward, but it's also pretty daunting. It's easy to forget about the simple act of getting from here to there when we're putting together the list of Things To Keep Us Up Late.

Real Monsters

Today at Support for Special Needs:

Excerpt: 

Schuyler doesn't understand what's going on in any comprehensive way. I don't know how to explain ISIS or Syria or refugees, and certainly not religious extremism or American jingoism. I tried to explain the Paris tragedy to her as best as I could, but honestly, I'm not sure I understood it all that well myself. I still remember the world before it lost its mind. I don't really have the intelligence or the stomach to make sense of it to Schuyler now.

Deflated

Today at Support for Special Needs:

Excerpt: 

Today, I’m tired of the walking. I’m tired of screwing up, and I’m tired of other people treating Schuyler like a cute little pet who might pee on the carpet, rather than a complicated and nuanced human being. My weapon is a rubber sword today, and it feels especially ineffective. I’m just going to sit for a while and see what happens. I wish I had something in my tank, and I’m sure I will tomorrow. But not today. Sorry.

Goodbye, Petey

Over the weekend, we said a sudden and unexpected goodbye to Petey, who had been with us since he was a tiny puppy in 2005.

Petey was a shy and sensitive dog (nonverbal, too, ironically) and he and Julie in particular loved each other deeply. If Julie was home, Petey was next to her; I was very much Petey's B Team. But if Julie wasn't around, Petey and I were play buddies, growly wrestlers and shameless dance partners. Petey left a very sad bunch of people and pooches behind him. It hit me last night that I'll never sing my "Petey Bo-Beety, the Petey Pop Pop" song to him again. He left a hole in this family that won't go away any time soon.

Goodbye, Petey. You were the sweetest and most steadfastly loyal dog ever.

The Thin Line Between Wrong and Wrong

Today at Support for Special Needs:

But perhaps more importantly, for special needs parents, it's not always as simply the choice between right and wrong. Sometimes, you just have to shoot for the choices that will probably turn out to be wrong, but just perhaps a little less wrong than others. Less damage to undo, fewer apologies, maybe even marginally more restful nights.

Borrowed Happy

"So, this is my life. And I want you to know that I am both happy and sad and I'm still trying to figure out how that could be." 

- Stephen Chbosky, The Perks of Being a Wallflower

This is one of those posts I might not actually publish, or that I might think better of and delete after posting it. If you're reading this, you're either Johnny-on-the-Spot, or perhaps I decided not to give the going rate of two shits and left it up. This might be one of those cases where just writing this is cathartic enough to shake me out of my mood and send me on my merry way.

I've been thinking about happiness lately.

(Because of privacy rules, this paragraph is going to be vague. Sorry, I know that's irritating.) I recently embarked on a venture of sorts, one that I thought might lead me down a new path, one that would make me genuinely happy. It ultimately didn't, and I'm taking that failure particularly hard, I won't lie. I feel foolish, and I feel disposable, and if there's a worse way to feel, I'm not sure what it might be. I aspired to something, and my wax wings melted pretty quickly.

The thing is, and I think this is significant, I can't remember the last time I did feel authentic happiness. I know it's been a very long time. If the idea of being truly content with my place in the world is so elusive that I can't even tell you how long it's been, I guess maybe that's an issue. I thought I could see the path until this week. I can't, though.

It's important to note that I'm not some sad mopey bastard with not an ounce of happiness in my life. I think rather the opposite. And when I find my confidence again, as I will shortly, I'll be fine. But it's an undeniable truth that the true satisfaction I find myself feeling is almost always a result of Schuyler's happiness. It comes in things large from time to time, but it's mostly the small joys. A monster movie well-realized. A trip to a comic book store that neither of us expected until we found ourselves standing outside. A joke we've told each other a thousand times. ("Knock knock!" "Come in!")

Schuyler experiences joy, and as a result, I feel some of that reflected warmth as well. I suppose, like a lot of parents (Julie very much included), my own happiness has probably become too caught up in my kid's. I've become dependent on the borrowed happiness I get from her.

If that sounds desperate or sad, I guess perhaps it is. But as I stand here at the end of a shaky week, it might just have to be enough, at least for now.

Stumbles

It was a rough week. I won't lie. It was rough for me, and it was even worse for Schuyler. One thing I can say for certain about this week, however, is that if bad days offer the chance for learning, I feel like we all had some graduate level education going on. I feel like we should be wearing those little flat hats and robes and jabbering in Latin.

Most of all, we learned that the structures we come to depend on can be unreliable at best. We were reminded that in the end, we can depend on each other, and sometimes that's all.

There are a lot of very individual stories I could tell about last week, but they wouldn't be of much help to anyone reading. Schuyler and I were both actually threatened, individually and in unrelated circumstances, in ways that left us both a little twitchy. That doesn't actually happen very often, to either of us, which is obviously a good thing, but I'm not sure either of us knew exactly how to respond. We didn't fight back, either of us. For that, I'm proud of her and ashamed of myself.

Without getting into details that are not entirely ours to share, I'll simply say that Schuyler learned how friends can be very unfriendly indeed, and perhaps that her own sense of what true friendship looks like needs some new layers of subtlety that don't come easy to her. I think Schuyler learned that school isn't always a place of fairness, and that sometimes she might find her sense of justice bruised by the "path of least resistance" decisions made by the adults around her. As far as important lessons for adult life go, I suspect that's an important one, but I hate watching her learn it.

I learned some of the same lessons, perhaps. As special needs parents, we become accustomed to the idea that the teachers and administrators and therapists who work with our kids stand on certain principles of behavior. We forget, until we're very dramatically reminded, that those professionals are also human beings. They have insecurities and they have tempers and they have blind spots where they cannot gaze for long with an objective eye. They can do solid work but still stumble.

That doesn't make them bad at what they do. If it did, I would be run out of proverbial town on a proverbial rail. Mine is a most personal kind of writing, and my reactions to the world around me are rarely divorced from my emotional responses. That can be hard for parent advocates, but I also believe it's what gives our work a unique kind of value. Professionals work hard for our kids, but they're also invested deeply in their reputations; parents are invested in not screwing up our kids. Unfortunately, that's probably sometimes at odds with our commitment to being correct in our approach. Our strengths can be our weaknesses; our love can make us stumble, too.

This week, I learned most of all how very human we all are, and how that humanity can be the root of so much failure when it comes to doing our work. Schuyler learned that lesson, too, although for her, I suspect it felt like a lesson in the smallness of those of us who profess to, and occasionally even manage to, work to make her life and the lives of her friends better, richer, more fair, more MORE.

Schuyler ended the week owed more apologies than she received, and as her father, that's hard to bear. I made choices for myself that were about peace rather than justice, but I at least fought similar decisions made in her life. I can at least say that. And thanks to a very dedicated teacher who listened to our concerns and went way beyond what she was required to do in order to address those concerns, and on a Saturday night, no less, we were reminded that there are a great many professionals out there who do this work for the best of reasons, and they do it better than I could ever hope to.

It was not a bad way to end a week that went on far, far too long.