Things that make me cry now that my antidepressants have changed: A seriously random list

Oh, antidepressants. Where would I be without you? No, seriously. I’m asking. I’m a bona fide mess on antidepressants, still wading through some untreated PTSD and agoraphobia issues, watching shit like Monsters Inside Me and Googling all the different kinds of parasites in my drinking water. Waking my husband up in the middle of the night and going, LOU. I’ve been Googling, and I think I have MRSA. IN MY NOSE.

(I was right about that one, by the way. Henry and I have both had MRSA infections this month, and they’ve sucked. So sometimes my anxiety is actually founded. Suck on that!)

My anxiety came to a head a couple months ago when the combination of a hormone plunge and Henry’s constant, hawk-like screeching conspired to give me a sobbing panic attack. For the past few months, Henry’s been making this awful noise. I can’t even really convey how horrible and ear-piercing this noise is because the depth of human language doesn’t even skim the surface of how absolutely nightmarish it is. The closest approximation I can give you is this video of a screeching falcon — when I played it for Lou, he said, “God, yes, that sounds exactly like Henry. Now, TURN IT OFF before I throw myself out the window.” So if you want to know how my days have been going, turn your volume up to eleven, play that youtube video, and loop it for TWO MONTHS STRAIGHT, ALL THE FUCKING DAY LONG. That’s how it feels to live with Henry right now, who doesn’t have the words to express what he wants and just shrieks until we bend to his will. Last month, finally, I snapped: I left him downstairs with his dad, went upstairs to bed, and just flat-out refused to deal with him for the rest of the day. When he woke up the next morning — screeching — I woke up my husband and cried. “I can’t,” I said. “I can’t anymore. My skin hurts from listening to that screech. Every time I hear it my heart starts pounding. I can’t be around him anymore. I won’t.”

So I took a xanax and went back to bed — for the entire day. Lou took off work and dealt with the screaming. Later, when I dragged myself out of bed, I called the doctor and made an appointment to discuss my anxiety meds. It looked like I was going to need something a little more hardcore, if I was going to function like a normal human being — because who knows how long Henry’s going to be doing this screeching thing? (As of this writing, he’s still doing it. We have an appointment booked with the speech therapist soon — for my sanity. I mean, for his language skills. Yeah. That.)

All day long, mom. Because fuck you, is why.

I’m not saying this to get sympathy, believe me. But you know what’s funny? When I get on the right medication and my anxiety is under control, I get cocky. I think I’ve conquered my PTSD or outgrown my agoraphobia and I start tapering off my medicine, thinking that I’ve got this thing beat. And three days later, inevitably, I’m having some small body-related freakout thinking about all the ways I could have possibly died had I been born in the seventeenth century (this is something I legitimately think about, and obsess over. People just died of NOTHING back then. Typhoid. Or infected cuts. Or rat-bites. Or boils, for God’s sake. BOILS).

My point is that situations change. Anxiety levels change. Anxiety tolerance changes. It’s not something you can just cure (apparently). It’s an ongoing, ever-lasting, ever-changing battle.

So here’s what I’m battling with right now.

1. Any gospel song. Have you ever noticed, in tons of predominantly African-American movies, that a popular trope is to have a huge come-to-Jesus at the end of the film, at a Church, set to a moving gospel song? I can think of six just off the top of my head. This one. This one. This one. Sort of this one. Oh, and this too, which makes me cry whether I’m in a hormonal upswing or not. When Lou and I are watching a Tyler Perry movie and there’s a church scene, I lean over to him and go “Someone’s gonna come to Jesus by the end of this song,” with an astonishing rate of accuracy.

Oh, and definitely this. Yup, instant tears:

Shug Avery singing “God is Trying to Tell You Something” in the Color Purple. Will NEVER NOT make me cry, I don’t care how much medicine I’m taking.

2. This stupid dance from Dance Moms. Stupid, stupid, stupid dance with stupid lyrics that remind me of my stupid daughter whom I love more than anything in the entire world. I caught some of it on TV the other night and cried so hard I couldn’t eat my huge bowl of ice cream (that’s a lie).

 

“You don’t know what a song you sing, you don’t know how much joy you bring…” Screw you forever, Dance Moms.

3. Stupid kids books with an emotional appeal. Especially this book by Neil Gaiman, which is basically a little sing-songy prayer that he wrote for a lady-friend who was about to give birth to a daughter (literally tearing up as I type this). And. It’s. JUST. SO. BEAUTIFUL.

 

 

GOD FUCKING DAMMIT.

4. This Beyonce video, which I legit cried over because it’s just. so. inspiring.

“Women are so awesome, and powerful, and I’m just so darn proud to be one….sniff…LOOK AWAY!!!”

So basically, until I get adjusted to this dose, I’m going to be a living, breathing mess of epic proportions.

And did I mention that the month of October (starting tomorrow) contains my birthday, my favorite saint‘s feast day, most of my family’s birthdays, Spina Bifida Awareness month, AND my favorite holiday of all time (Halloween)?! Hopefully these meds kick in real soon, because I will be so happy, busy and just plain emotional I might just die.

Reader beware.

Actually, Ken Jennings, wheelchairs are awesome.

Wow. The wheelchair haters are really coming out in full force lately.

First, there was Kanye. At a concert in Melbourne, he demanded that all his fans stand up as he was about to start one of his songs. Apparently, he stopped the entire concert to single out one person who wasn’t standing — because he was in a wheelchair. Only after someone waved his prosthetic leg in the air and the entire venue knew that this guy was disabled did Kanye continue with the concert. Unbelievable.

(And, okay, I guess that’s not wheelchair hating, per se, but it’s certainly insensitive and totally objectifying: “HEY EVERYBODY — CHECK OUT CRIPPLED McNOLEGS OVER HERE! He’s in a wheelchair! He’s literally the only person not standing! He can’t use his legs like KANYE!! I AM A GODDDDDD!!!!”)

No, really … he said that.

Barely a week later, another high-profile celebrity made an insensitive, ableist comment. Ken Jennings, of Jeopardy fame, tweeted that there’s “nothing sadder than a hot person in a wheelchair.” And, um, I can certainly think of a few. What about a person who’s home-bound because he needs a wheelchair and doesn’t have one? Or how about a self-proclaimed genius who’s too blind to see past conventional standards of beauty, whining on twitter about how a life-changing mode of mobility shrinks his boner? Because that is pretty sad.

“I’ll take ‘Dumbass Things To Say’ for 200, Alex.”

Ken and Kanye’s wheelchair remarks were markedly different, in two completely separate contexts, but they both solidified what our culture, in some ways, has always said: People in wheelchairs are Other. Less desirable. Deserving, somehow, to be lumped together, singled out, pointed at, objectified, and ridiculed. (And by the way, it’s not rude to laugh at someone’s disability — it’s hilarious. It’s edgy.)

Just. So. Edgy. Like this best-selling shirt from T-Shirt Hell. Takes a lot of balls to ridicule someone whose legs work differently than yours.

The consensus in our culture, I guess, is that wheelchairs are sad and people in wheelchairs should be pitied. Or singled out. Or mocked. Or all three. Which makes no sense to me now.

But at a time it did.

Before I had a kid with spina bifida, I didn’t give much thought to wheelchairs at all. But I know for a fact that I did feel bad for people who were resigned to them. Man, I thought, what a pain in the ass it would be to have to use a wheelchair. You’d always be at butt-level with everybody else. You’d have to depend on that chair for everything, and what a pain it would be to transfer over to the toilet or into bed. Ugh. I’m so glad that isn’t me.

I didn’t need a wheelchair. But my child probably will. And when he was born, it changed everything I thought I knew about disability.

He has to use a nasal cannula and a feeding tube in the NICU? Thank God. Now his body can grow and heal without having to use all his energy for eating or breathing.

He has to have a shunt? Thank you, Jesus! A hundred years ago, and even today in some poorer countries, hydrocephalus is a death sentence. But we get a reprieve — just a thin, plastic tube that reroutes his cerebral-spinal fluid to another part of his body, and the hydro is virtually not a problem at all.

We have to catheterize him? AWESOME. Without catheters, Henry’s kidneys and bladders could get seriously messed up or infected.

He might have to use a wheelchair someday? Simply fantastic. Because this little guy might need one. Since his legs and feet don’t work like yours and mine, he’ll need special assistance to get him where he needs to go: On the bus for Kindergarten, out of the house for park and zoo trips, the possibilities are endless. With a wheelchair, we won’t have to worry about him being excluded from things because his legs work differently. He won’t have to be left out or homebound. Wheelchairs are freedom! Wheelchairs are opportunity!

And quite frankly, Ken Jennings, wheelchairs aren’t “sad.” They’re awesome.

The Children’s Book I’ll Never Write

It probably doesn’t surprise anyone reading this that, growing up, I was determined to become a writer. (Or, more to the point, a published author, like Stephen King, because how cool would that shit be? Write a novel, get critical acclaim, scare a bunch of people and earn a boatload of money? SIGN ME UP.)

One of my favorite characters in any book was Harriet from Harriet The Spy.  She was a bona fide writer — her class columnist– and I idolized her. Every day in third grade I’d come home from school, put on my trench coat, and hide in the closet to “spy” on my family. Then I’d go outside on my “route” and “spy” on my neighbors — I’d look in their windows with binoculars and everything. (Sorry neighborhood peeps; I wasn’t aware that was illegal.) I filled dozens of composition books with musings and observations and vowed that I would use my notes one day to write a sprawling book of incredible fiction. (And then I re-read them one day when I was fourteen, got terribly embarrassed and self-conscious, and chucked them all in the garbage. So much for that plan)

I even dressed like her — trench coat and all. God help me, I did.

All this to say — I’ve always wanted to turn my life into a story. Even the ugly parts, the embarrassing parts. I’ve learned not to throw them away. Now that I’m older, I appreciate them more.

When I emerged from the haze that was Henry’s diagnosis, something that absolutely rocked me to my core, I started writing about it. The shock. The ubiquitous sick feeling in my stomach, thinking about raising him. The absolute terror of anticipating a child with medical special needs.

And then I had the baby and it was kind of like

Well that was not nearly as bad as I thought it would be. Huh.

The terror went away almost instantly — not because Henry had zero medical issues, but because he wasn’t just the sum of his diagnoses any longer. He was a little boy with a personality and his own quirks and likes and dislikes, and oh yeah, he had feet that turned inward or whatever (big deal). So Henry was born and the terror disappeared. But the urge to write did not.

More and more as he grew, I’d write about spina bifida as it related to Henry — mostly on this blog, but sometimes in an actual magazine or speaking engagement, to my eternal amazement. And more and more, I toyed around with writing a book — something about disability, something about acceptance, something about how kids with spina bifida are normal and awesome and totally-not-terrifying like I had once imagined they would be. One day, during an interminable wait in the allergist’s office, I noticed that zero books at the doctor’s office featured kids with disabilities. Quickly, I searched Amazon on my husband’s iPhone and noticed that books featuring spina bifida kids (or any “disabled” kids, really, were few and far between). It bugged me.

Eureka, I thought. I’ll write a children’s book. Immediately I grabbed a napkin out of the diaper bag and started writing down some thoughts — in crayon, no less. A children’s book would be perfect, I mused. Not only could I do my part to normalize the ‘bif and write a lead character who happened to be disabled, but I had an urge to write and a fabulous cartoonist at my disposal. Our children’s book was going to kick ass.

Before we left the allergist’s office, I had a rough outline and even a title — Spina Bifida and That’s Okay. If I were fourteen, I would have crumpled it up and thrown it away, because I realized later that it was didactic and embarrassing, but I’ll share it with you now, because I’m older and it’s good to learn from our embarrassments: The book profiles several kids with spina bifida and their various abilities — Johnny can walk, Lucy walks with assistance (AFOs or KFOs), Gertrude doesn’t walk at all (wheelchair). And that’s okay. Some kids use feeding tubes, some eat through their mouths. Blah blah blah. And that’s okay.

Eventually, I realized I wasn’t talking to a hypothetical kid audience, and that’s where the embarrassment kicked in. I wasn’t talking to kids at all.

I was talking to other potential parents. I was talking to myself. My child might not walk — and that’s okay. He might have a learning disorder — and that’s okay. His “normal” won’t look like everyone elses’ “normal.” That’s okay. You’ll be okay. We’re okay.

One thing I’ve noticed so far, on our spina bifida journey, something that’s shocked me, is that it’s not the kids who need to be coaxed into accepting people with spina bifida — it’s the adults. Whenever we’re at the grocery store and a kid sees Henry’s cast, that kid is the first one to run over and shout, “COOL!” The parent, lagging behind him, is the one pouting and going, “Aww! What happened? Poor guy!” In general, It’s the adults who are terrified, who abort “defective” fetuses in staggering numbers, who hem and haw over making things like playgrounds accessible, who treat disabled people like props and publicly humiliate them (I’m looking at you, Kanye). If anyone needs a primer on love and tolerance, one thing is obvious: It’s not the kids.

My family, when they learned about Henry, was unanimously supportive. We were all terrified, shaken, but there wasn’t one family member who didn’t reach out and help us in whatever way we needed, thank God. But it was my cousin Grace’s reaction that really stunned me, in the best possible way. When our Aunt and Uncle sat her down and explained that Henry wouldn’t be able to walk or run around like all the other cousins, she weighed that fact for a minute, and then shrugged. “That’s okay,” she said. “We’ll just play on the floor. Some of the best games are on the floor.” That is the reaction I wish I could have had, instead of crying for three days straight and thinking my life was over. Kid with a disability? Can’t stand or walk? Well … whatever. We’ll just play on the floor. The floor is better anyway. Grace, at six, handled his situation with more tolerance and acceptance than I could have dreamed of, as an adult twenty years her senior. That’s impressive, dude.

Grace’s reaction, essentially. Along with every kid I’ve ever encountered.

I’ll never write Spina Bifida and That’s Okay, because kids like Grace simply don’t need to be reassured. Spina bifida is “okay” — and she ended up telling us.

(By the way, I realize that Henry is not yet two, and my experience with other kids and disabilities is painfully slim. I realize that the minute I press “publish,” Henry could be teased and taunted at the playground by some kid who is scared of and confused by the fact that he can’t yet walk, that his feet are weirdly shaped, that he still has bandages covering his foot from his recent surgery. And if that happens, I’ll eat my words and write the stupid book.

… Right after I burn that kid’s house down.)