mental health

A Full Plate

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It’s finally mid-December, which means we’re ~20 days away from this hell year being over. The FDA has approved the Pfizer vaccine with shots beginning ASAP (I think someone in the Massachusetts government was saying that the first shots would be going out on Thursday), so there’s a light at the end of the Covid tunnel; and a new president will be inaugurated on January 20 (although he’s not as progressive as I’d like, it’ll be nice to wake up without that sinking sensation of pure dread for a little while). 

In my house, things are busy and have been, to the point where my body is 100% telling me to slow tf down, but it’s like… I can’t, because if I do, everything falls to pieces. I’m not saying this because I’m being overdramatic; sometimes SAHMing feels like being the manager for an entire company. 

But I digress.

I said last time that I’d been planning to write about sciatica, and boy do I have a story. Towards the end of my partial hospitalization program, where I was feeling mentally healthy and ready to get there physically as well, I woke one day with excruciating back pain. Nothing touched it–not NSAIDs, not Tylenol, not warmies, not stretches. When I went to the doctor for it, the x-rays showed that I basically have (a) mild scoliosis; (b) bone degeneration; and (c) bone spurs in my spine, which explains why I’ve been prone to throwing my back out since I was in college. 

(it was November of my junior year, I had just turned 20, and I had a lot on my plate: finishing out the semester, providing stage manager/dramaturgy stuff for our chamber choir’s Madrigal Feast, violin lessons, pulling my act together for a semester studying abroad at Oxford University, plus all the typical late-teens/early-20s drama that comes with being a college student. Oh, and that’s when I first got diagnosed with asthma and what’s probably chronic bronchitis, so yeah. A little on my plate)

My doctor had me go to physical therapy, and I was slowly getting better, but I’d also have days where I’d get worse. The pain seemed to be doing weird things, sometimes being very calm and manageable and other times being too bad for me to get out of bed. Eventually, by about mid-November, I found that I couldn’t sit up for long periods of time. I had to lounge on the couch or in bed with my legs and back in a specific position or else the pain would become unbearable. I started using a TENS unit regularly, trying to confuse the nerves in my back and leg, where the pain had now spread, and while the massage was pleasant, it didn’t do much long term. 

This all came to a head in the days leading up to Thanksgiving. Even without the usual hubbub (read: 20 something people at my uncle’s house and baked brie and so many desserts and family for days), I had plans to bake cinnamon rolls and cookies and green bean casserole for our more subdued holiday (my parents, whom we see pretty much every week anyway, were hosting and making the pies). The Tuesday before, I had physical therapy first thing in the morning and felt GREAT, but that afternoon, we did pictures with the kids…

…which, don’t get me wrong, turned out AMAZING, but once we were done, I was in too much pain to do anything but go collapse in bed. I wanted to be at my best on Thanksgiving, so I decided to spend Wednesday in bed, recovering.

Well, silly me, because that’s the opposite of what you should do with sciatica, especially if it’s caused by a herniated disc (which I suspect mine is). Being horizontal spreads the disc material out and makes it bulge out more when you eventually, inevitably stand up (because I am not going to get a fucking bed pan for sciatica). So Wednesday wasn’t too bad at first–I spent the day lying on my stomach, doing press-ups as instructed by my therapist, and listening to hypnotherapy and guided meditation on YouTube to get my mind off the pain. 

BUT sometime Wednesday night, all the things I had been doing just… failed. And Thursday morning, I woke up in blinding agony.

I have pain rankings, and this was only the second thing in my life to hit a 10. The first was gallstones, and those rank lower if only because they’re temporary. Once the gallstone breaks up or passes, the pain fades, and you go back to your life until it happens again. With sciatica, though, sitting and standing and walking and doing anything hurt like hell, and if you don’t figure out how to take care of it well, you eventually get to the point where there is nothing BUT pain. Pain is your existence, and you can’t remember a time without pain, and you can’t imagine a future time without pain, because that’s all there is. 

Eventually, I was screaming. Just mindlessly screaming because it hurt so much. My primary care doctor had suggested that if my pain got this bad, maybe I should go to the ER, but I’d been avoiding an ER visit because our new health insurance has terrible copays for everything, to the tune of “an ER visit before you’ve met your annual out of pocket maximum will cost you at least $3500, and if you HAVE met your out of pocket maximum, you’ll have a $1000 copay.” 

(MAN I am so glad that we pay 20% of Kyle’s paycheck to get THIS insurance instead of however the fuck much we would pay to get universal healthcare, like WOO this is so much better than living in Denmark and getting taken care of for the low low price of FREE)

But we called the ER and said I was on my way, and then I couldn’t even sit up at all, so we called an ambulance. I had to wait for the ambulance in the living room while screaming and crying and shaking from pain, and Sam had to see me like that, which I hate. I don’t remember anything about what I said or thought beyond “I hate that Sam is seeing me like this”–allegedly, I was telling the EMTs that I hoped they were going to get to have turkey, and I was really worried about making sure they’d have their turkey, but I don’t remember any of it. 

They were great, as I recall–they gave me a nasal shot of fentanyl to take the pain from an impossible place to a place where I could be transported, and they were really funny. The pain did not go away completely from the fentanyl, but I stopped screaming for the ride and managed to get to a point where I was just lying there, quietly hurting, with nobody helping me. 

That was probably the second worst part (the worst part was Sam seeing me like that)–being in the ER and nobody being there to even check in with me. They looked me over once I was there and gave me like… whatever generic painkillers they had available and eventually did prescribe me a nerve blocker called gabapentin, which has done WONDERS. BUT it also reminded me why I hate going to the ER for anything ever, because unless you’re dying or possibly dying, they sort of don’t pay attention to you at all. 

And that’s understandable–there are a lot of people coming in and out of the ER, sometimes just to get painkillers, sometimes just to get an ultrasound of their baby, sometimes just because they’re like. Itchy. It’s especially bad now with Covid and people having to go to the ER because they might have it (on my way out, I saw three rooms designated as Covid-only). And I didn’t WANT to go to the ER, but my pain just got to an impossible point. 

My therapist helped me with it this week. She told me that one of the hallmarks of chronic pain is that eventually, your body is too tired to try and fight it off, and the more you have on your plate, the harder it is for your body to work through the pain. Which was like, wow, I didn’t come here to be attacked like this, but that makes way too much sense.

There’s not much of a choice in the matter, of course. Kyle’s job doesn’t necessarily demand too much of him (he’s able to come out and help when I really need it, especially since after the ER), but he’s still working full time, and I’m full time with the kids. Especially during the holiday season, that means that my daytime hours basically evaporate, because there’s so much that I need to organize and do and make sure of, all while I’ve got three kids asking things of me at all times.

I’m not complaining. I love being a stay-at-home mom. But I think I might be reaching a pandemic breaking point, because said pandemic has unquestionably made things MUCH harder. There’s no chunk of afternoon time where the twins are napping and Sam is at school where I can just focus on getting household stuff done, whether it’s cleaning or setting up appointments or paying bills or whatever. There’s no time when I’m awake and not exhausted where I can just be. 

I think I’d be able to bear it much more if I weren’t prone to chronic pain, but when you add all that work to the work of bearing chronic pain, the pain gets severe that much faster. You’re already exhausted from the everything–the kids jumping on the couches and knocking each other over and batting at Christmas ornaments because they want to be kittens, the homeschool battle because even on good days it’s a battle, the trying to keep up with everyone’s therapies like ABA and speech and coordination and whatever the fuck, the socializing that starts to feel like work because you’ve been overwhelmed with people being literally ON you all day, the weekends where it used to be getting more done but are now just gasping air before being pulled under again–and then the pain creeps in. 

And pain is so exhausting. I remember when I was younger and used to get excruciating menstrual cramps (I found out while trying to have Sam that I had a tilted uterus, which has fortunately fixed itself since having kids, but let me tell you, it’s a for-sure recipe for very bad periods), I’d reach the end of the day and just fall asleep for 18 hours straight. There are a lot of ways to think about pain that involve accepting it and trying to help your body cope with it better, but sometimes, it really is just a battle that you end up losing.

So here we are in December. I can tell that if I weren’t on the meds I’m on, I’d be in a lot more pain, but the gabapentin is doing the excellent work of keeping the pain manageable, as long as I don’t push myself too hard and keep mobile. Sciatica is a weird thing where the more you’re able to stay mobile and keep exercising, the better it gets; but at the same time, when it’s at its peak, the pain defies belief, and all you want is for someone to just knock you out so you don’t have to deal with it anymore. BUT the meds I’m on make it possible for me to stay mobile, and I have a timer set on my phone that reminds me to get up and loosen up every two hours or so (I call it my dance break, and the twins participate, and none of us are very good dancers). 

I keep doing Everything because I have to, which is something I keep thinking whenever someone remarks on us having two-year-old twins (and also three four-month-old kittens, more on that in a second) and asks, “how do you do it?” The only answer is that we do it because we have to. We had these kids, and we’re going to make sure they thrive. And there’s a light at the end of the tunnel–as I’m writing this, the FDA is an hour past approving the Covid vaccine for emergency use. By the time the twins turn three in March, we should be well on our way to getting our jabs, and in any case, the twins start preschool March 15 (assuming all things run smoothly). That will make things easier. 

But in the meantime, I’m sitting here, feeling my leg be numb because it can’t hurt, and knowing that I can’t stop juggling all these balls or else everything falls apart.

And in the midst of all this, we adopted three kittens!

Honestly, they don’t add a lot to the load. We’ve been on waiting lists since Tinkerbell passed because I cannot go a long time without a cat, and the shelters we applied to wanted to make sure they paired us with kittens that could thrive in a house with three kids. I got the call Monday about a litter of five cats that had been raised with kids about Sam’s age and the caveat that I had to bring all three kids to meet them and the kids had to behave or else the kittens wouldn’t come home with us.

We went in wanting just two, but of the litter of five, two had already been adopted, and these three were the only ones left. And we couldn’t just LEAVE them, so. 

Well. 

They also kind of adopted us. Each one snuggled up to us and purred and rubbed against our legs and force pet us (you know, when cats bump their heads against your hand like “LOVE ME” and you’re like “I already do?” and they’re like “NO LOVE ME” so you do), and… well, they’re necessary. Not because we have any sort of mouse problem, not because I need more on my plate, but because they spark joy. A whole lot of joy.

Biggest brother is Duke Orlando Stinkybutt Catrissian, so named because he farts like an unholy terror. He’s a little fighty, but only with me or Kyle; with the kids, he keeps a respectful distance unless they’re petting him. He’s the most adventurous of the trio, most prone to getting into trouble and the murderer of at least one tree ornament. 

Then we have Duchess Oreo Zoomies the Experience, who has established herself as Sam’s Cat. He named her–he saw the pictures of the kittens and decided that her name should be Oreo because she’s black and white like an Oreo. She ADORES Sam–hunts him down wherever he is and snuggles up with him. And she’s been so good for his anxiety, too, helping him to calm down and feel safe enough to sleep, even when he’s worried about something. She’s almost as much of an explorer as Orlando and is highly prone to Zoomies at all times.

Last, but certainly not least, is Duchess Orla With the Chanel Boots…

…who is Mine. She established herself as Mine when we were meeting them and she only came out to socialize with me and Carrie. She’s the shyest of the three, only really coming out for cuddles when the kids are safely in bed and Kyle and I are in a quiet place. Once she’s out, though, she’s a party animal but very ladylike about it. She’ll mince around the covers and attack our feet with the same attitude as Miranda Priestly going after an incompetent staffer. She’s adamant about being held but will also fight me forever about the cat pouch hoodie I bought (yes, I am being That Kind of Cat Mom). 

And, well. It may have been biting off a lot, but I feel like the joy and stress relief they give with their cuddles make up for the buying food for three cats and scooping a litter box again and “what are you chewing on???” and “GET OUT OF THE TREE” and “Isaac, it is REALLY ADORABLE that you’ve decided to pretend you’re a kitten, but if you try to climb the Christmas tree, nobody will end up happy” and the “yes, Carrie, the kitty is sharp, have we learned a lesson?”

They’re necessary. They don’t feel like more on my plate. They feel like they’re individually taking the stress of having so much on my plate and dissolving it, and that’s a nice feeling.

Unmasked

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I was born in 1983 and grew up in an age when girls weren’t really diagnosed with autism unless the symptoms they presented severely interfered with their daily life. A girl like me, quiet and awkward, a little weird, a little too obsessed with the Thing Du Jour (American Girl dolls, Mandie books, My Little Pony, Barbies, spooky stuff, etc.), mostly gets good grades but really struggles with homework in subjects she doesn’t like… I flew under the radar. I didn’t stim or do anything that would make me seem weird. I didn’t freak out when the sounds in the cafetorium/cafeteria were too much for me to handle, I just got really quiet and didn’t participate in the lunchtime conversation. I excelled in certain subjects and flailed in others. I was flawless when it came to standardized testing, but then got an 8/100 on a math test the same week I soared into the 93rd percentile for the NMSQT. 

I could talk, and I took care of myself physically, enough that I didn’t usually warrant a second glance. Oh, I got bullied and made fun of in junior high–brutally at some points–but I flew under everyone’s radar for the most part. I don’t think anyone ever clocked me as weird enough to maybe be autistic, because back then, in the 1990s and early 2000s, autism wasn’t as well understood as it is today, so my cocktail of manifestations didn’t alarm anyone.

That and I masked. 

Masking is pretty common in our world. We all wear masks sometimes to hide certain aspects of our personalities depending on the situation; for example, if you’re at an important job interview, you’re not exactly going to be showing off the part of your personality that likes to do keg stands or the part of your personality that likes to lounge around in the nude on weekends. There’s nothing wrong with either those traits or the masking of those traits. It’s just something that you do to survive socially, because your new boss does not need to know that you like a gentle breeze ‘round your privates on Sunday afternoons.

Where autism is concerned, masking is a lot more… consuming, let’s say. Autism isn’t a personality trait that shows up in certain situations (like even if I do like to run around naked on weekends, I don’t do that in the office); it’s the way your brain is wired. Not wrong, just different. The trouble is that different can be socially damning. 

I remember when I was younger, there was a kid on my school bus whose autism manifested much more noticeably than mine. While I would sit quietly and stare out the window, focusing on the cool sensation of the glass against my forehead, he would talk and flail and laugh, and the kids from the back of the bus bullied him mercilessly, sometimes going so far as to sexually harass him. He stood out too much; it was social suicide. 

And, well, I learned from that and from other small situations as I grew up that letting those weird parts of you show is too dangerous. That it’ll get you made fun of and torn to shreds. That you’ll be alone. I saw the girl who came from a lower income family, whose clothes and hair were always dirty, who always sat alone. She was too different; she was alone. I saw the kids who I now regret not befriending, who went on and on for days about D&D and all of those fantasy stories, and I saw how people avoided and laughed at them, and I learned a lesson. They were too different; they were mocked. 

You hide things, you know? Don’t talk obsessively about Disney World, that’s weird. Are you excited about that thing? Don’t flap your hands or bounce or do a little dance; that’s weird. Are you too tired to think? Don’t play with your hair; that’s unhygienic (Mrs. Dube, if you ever read this, I hope you feel like shit for what you did to all of us in your class). Everyone is having fun at this party, and even though it’s too much for you, smile anyway. People think it’s weird when you talk to them without meeting their eyes; make eye contact, even though it hurts. 

In a way, I sometimes felt like an alien, trying to learn the way that the world was supposed to work. It’s part of why I loved being onstage–it was like an evaluation of my ability to act like a human being. “SEE?” I could say, as I got into one of my character parts (I had so much fun with those). “LOOK AT HOW GOOD AT HUMANING I AM!” And I wasn’t weird or different, I’d unlocked the secret to being human like everyone else. 

And then the lights went out, I got offstage, and I was right back to being bad at being a person again.

(this all sounds very sad, but I promise, there’s good coming)

But one thing nobody talks about, when they talk about masking and autism and all of that, is the beautiful freedom of unmasking: of finding someone or several someones who catch a glimpse beneath your mask, show how much they love you anyway or even because of what they see, and help you feel comfortable enough to remove your mask completely, to say, “fuck it, I am who I am.”

My most obvious example of this is Kyle. Over the early years of our relationship, he peeled back layers of my mask bit by bit, knowing what was underneath but letting me take my time to show him. And now, my god, how comfortable I am around him! We were watching The Mandalorian a little while ago, the episode where Moff Gideon reveals that he has the darksaber, and I shrieked and started flapping my hands, which I never do because I know it’s a weird thing, that even if I have the instinct to do it, people don’t like it when you do it, but with Kyle, it just hit me that maybe it’s okay, that maybe he loves that about me, and he does, and he smiled at me and just said that he knew I’d love that, and that was that.

GOSH I love him. 

And I’ve been thinking about it, and I realized that my first intentional unmasking came when I did my semester at Oxford back in 2004. Away from people who knew the masked me, away from anyone who knew the big long plans I had for my life and the narrative strand I wanted my life to take, I felt free to just… be. Not to the extent of flapping my hands excitedly about things, but I went in exhausted, torn down from a shitty relationship right before I left, and basically stripped down to my essentials to a point where I just… couldn’t be bothered. After all, it was only 100 days, and if my housemates thought I was too weird, we’d all be going to different corners of the world after that anyway.

But they didn’t think I was too weird. Pretty weird, I’m sure (I am pretty weird, after all), but they liked me, the me with only the barest of masks on, and the best part about that was how it allowed me to solidify who I am, not just which mask I’m wearing. And since that point, I’ve been a lot less interested in hiding any part of me: autistic, neurotypical, pleasant, unpleasant. I am who I am, warts and all. 

I also look back and think about the handful of “ones that got away,” you know, the people with whom you know you could have had something special, that even when you’re perfectly happy in the life you’ve got now, you regret the way things ended. And I realized that the ones that got away, the ones I wish I had actually connected with for longer than a millisecond, they all peeked beneath that mask and tried to let me be myself… and I got scared and ran, because even with that reassurance that hey, I love you for who you actually are, it’s hard to trust. 

Because you know, you get people who want to remake the mask into something more to their liking or you get people who trust the mask is reality, but when someone genuinely wants to see what’s beneath the mask before you’re ready, even if they like what they see, you get scared. 

Anyway.

Isaac, so far, has no mask. He looks to his brother and sister for information on how he should behave as a person–it’s fascinating to watch in real time–but he doesn’t pretend to be anything other than who he is. And he is an absolute delight of a child. He’s creative and funny and an absolute little shit in the best way possible. 

(parents know that when you’re calling your kid a little shit, it’s not because you don’t love them; it’s because they figured out how to do something they weren’t supposed to do in a way that you can’t help feeling a little bit proud of. Like, no, you’re not supposed to have eaten 32 cookies before dinner, but the Rube Goldberg device you built to access the Oreos is technically amazing and I’m sending in your application for Mensa while also sending you to your room)

We call him our little rogue, because we are a D&D family, after all. Sam, with his strong sense of personal rules and tendency to charge headfirst into everything (walls included) is our paladin. Carrie, always performing and able to reduce you to giggles or tears with a single look, is our bard. But Isaac, climbing and sneaking and figuring out every possible puzzle, is our little rogue. 

He likes to build and set things up in particular ways. He uses the books in his bedroom to make smaller rooms–setting them up at the foot of the bed or against the wall to make into a room with a door that opens and closes. And sure, he tears the pages out and tosses them around like confetti (we are down to about 3 books that he hasn’t destroyed, save for the older ones that come into the room for bedtime and leave afterwards), but the amazing creativity and cleverness he exhibits to build his own little rooms like that just astounds me. 

And then his cars. He’s doing the stereotypical lining up cars thing, but he does it in such a way that the cars all face out of the window through which he watches cars coming up and down our street. And I just flail because what a guy! What a clever little dude! What an amazing mind at work! 

We never discourage him from stimming; instead, we stim with him, the whole family gets involved. We turn on his favorite music, and the five of us just rock with him, and he has this HUGE smile on his face because he’s not alone. His family gets him. We’re not going to stop him from being who he is. 

I think the fact of him eventually masking is inevitable; even in a more enlightened world, 30 years after I was a weird kid combing her hair with a fork in the first grade, you can only deviate from the norm so much before people start giving you a wide berth. He’ll have a teacher scold him at some point for rocking too much during a test or he’ll get teased for talking too much about cars with another person. He’ll learn to hide those aspects of himself for a while, around people who don’t know him well enough to love him for who he is. And I hate it.

But.

I hope that Isaac understands this: that he doesn’t need to mask around us. That we’ve seen the way he’s made from the very beginning. We know why he does what he does, and we love it about him. Isaac, unmasked, is the person we love and always will. 

Breathe Again

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2020 is still garbage, but at least the garbage is starting to look like nice garbage instead of a complete dumpster fire on a personal level. 

(globally, the dumpster fire still rages and leaves us with a LOT of work to do once the flames die down in the hopefully near future)

My time in the PHP has drawn to a close, but it ended on a pretty positive note. I actually stayed a week longer than anyone had planned because I started back on my birth control to try and calm some of the really wretched pelvic pain I’ve been dealing with for years now (still no idea when I’ll be having the laparoscopy to look at that, by the way, which is annoying). Back in April/May, we wondered if my birth control had contributed to my depressive downswing, so the psychiatric RN for the program wanted me to stick around another week in case she needed to make immediate changes to my antidepressant in response to my altered hormones. 

BUT so far so good where that’s concerned, so my last day in the program was on Friday the 18th, and I’m now readjusting to the world. One of the biggest ways the program helped, I found, was that it kept me from getting super overwhelmed by the sheer volume of STUFF on any given day with twin two-year-olds and a six-year-old, because the program is over and I’ve found myself feeling overwhelmed again. Not like I’m drowning but just like parenting three kids, two of whom are two years old, one of whom is autistic, another of whom has a tentative diagnosis of ADHD, plus homeschooling the oldest, and all of that during a pandemic… is a little much. 

Nothing has become less since I finished the program; if anything, it’s become MORE because the twins have to get used to me running ABA again and have been super clingy since I finished the program because MOMMY DON’T GO BACK INTO THE OFFICE AGAIN AAAA. The biggest difference has been that I recognize what’s going on and am able to stop it in its tracks with a bunch of techniques I’ve learned. It’s all dumb stuff that mostly relies on me recognizing that I am feeling overwhelmed and that I have a right to feel overwhelmed (and that, in fact, most people would also feel overwhelmed in my shoes), and that’s the hardest part. Depression is a sneaky monster, and it uses whatever looks even slightly like it to gain a foothold, and that’s the danger with it. 

BUT BUT BUT

I’ve also got a lot of things in my corner now. Like a better dosage of my medication (same meds, just more of it, which has slowly but steadily been helping me get to a better place), and like tools to help me recognize when I’m feeling garbage (all written down in the now very FAT notebook), and with all of that working for me, a weirdly genuine optimism. 

It’s weird to have optimism in 2020, but I do. The world is a garbage place right now, but there are still stars, and there are still Octobers and Novembers. Despite it all, people as individuals are good. The pandemic isn’t forever; even if things go horribly in November and incompetence persists past the point of overwhelming sense, pandemics eventually end. An overwhelming majority of the world agrees that climate change is an emergency that needs immediate tending. People care about each other. Vaccines are coming. And time passes so fast these days, which is how aging works, so by the time I’ve blinked twice, it’ll all be over and hopefully better for it.

I wonder if some of the optimism isn’t also because Kyle got a job.

Finally.

No details here, because details there are still being ironed out, BUT the long and short is that it’s a FANTASTIC position that will not only help our family financially (our primary criteria) but will also look AMAZING on his resume, and I’m really proud of him for getting the position and persisting through these last ~5 months where it all seemed really hopeless. 

The only downside is that the job is just north of Boston, an hour commute without traffic (lol no traffic going into Boston, bless). We’re going to drive the route as a family sometime in the next week, just to see how it looks and how stressful it is to get there and back again, like unto a Hobbit. The higher ups are pretty okay with Kyle working from home (since it means fewer days with hours lost to an exhausting commute), but it’s still a schlepp. 

But. We’re going to make it work. 

And with him working again, I feel like I can breathe again. 

*

In other news (in bullet list format because I take my antidepressant at night now, so I find myself being completely useless well before I want to be): 

  • I’m seeing a physical therapist for my everything. I went to the doctor about two weeks ago to see if I could do anything about my back pain that was coming along with the pelvic pain, and my doctor referred me to a physical therapist after taking an X-ray and seeing that my spine has a slight left curve and some minor bone degeneration (which is wild because I’m 36 and that’s not supposed to happen yet?). I’ve been doing those exercises for about five days and (a) ow, but (b) I’m already feeling an improvement. Essentially, the therapist found that my core muscles are a disaster area (no surprises here), so most of my exercises are focused on getting those working again so that the other muscles related to making me upright don’t dissolve from overuse.
  • Homeschooling Sam has been mostly good. He does better on days when we vary up how we study–read a story, get up and run around, watch a video, do some math. There are still more than a few days where he’s not interested in doing ANYTHING, but those days are becoming fewer and farther between. This week will be weird, since he’s having to wait to start until Wednesday (he had a doctor visit today and has a dentist visit tomorrow), but mostly, he’s blowing us away with how clever he is and how even things like third grade math are a breeze for him. 
  • The twins are talking up a storm–parroting (Isaac) and making up the most hilarious sentences (Carrie), and it’s a delight. 
  • And Isaac kept us up until 4 a.m. last night, so I’m going to cut this off here before my writing ceases to make sense. 

Until next time…

Caterpillar Deconstruction

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I was an adult before I learned what happens to a caterpillar when it’s in a chrysalis, mostly because between the age of about seven until adulthood, the metamorphosis of a butterfly just wasn’t at the top of my priority list of “things to know about.” I knew that butterflies had four steps to their lives: egg, caterpillar, chrysalis, butterfly. I knew that I got really excited whenever I saw a butterfly. But I never really cared to find out what the process of changing from a caterpillar into a butterfly looks like. 

(the process of changing from an egg to a caterpillar is basically the same as egg to chick or egg to leopard gecko or egg to spider baby: you get out and you are the thing)

I suppose, even into adulthood, that I’d always assumed it involved the caterpillar just sleeping for a couple of weeks and growing wings while asleep, despite that butterfly bodies and caterpillar bodies look so very different. Maybe when I was smaller, I’d thought that it involved more thought on the caterpillar’s part, like they spent two weeks in front of a closet full of wings trying to decide what color to wear. Had I been a child with access to Sailor Moon (which I was not), I’d probably have imagined a teeny tiny magical girl transformation within the chrysalis. As far as I knew, those things were magic.

Well, as it turns out, the magic of turning from a caterpillar to a chrysalis to a butterfly is kind of messy. Essentially, the caterpillar’s body digests itself from the inside out. Everything it used to use in order to process the leaves it ate instead turns and just… eats its body. All but a few tissues of the old caterpillar are broken down and destroyed as the biological processes that create a butterfly take place. 

(moths do essentially the same thing, except they have cocoons, which are silky, instead of chrysalises, which are hard)

Imagine if that’s how puberty worked. Your kid suddenly starts eating like a bottomless pit then finds a place to hang upside down by their ankles and wrap themselves in a random suit of armor. If you open the suit of armor anywhere within about two weeks, you’ll find nothing but goo because your kid’s stomach acid just devoured them, and then when they come out two weeks later, their legs and mouth are the same, but the rest of them is completely different. 

Bugs are weird.

*

So anyway, week one of partial hospitalization!

Every day starts at 9:00. About fifteen of us assemble on a Zoom call, which functions pretty similarly to most non-work Zoom calls. Some people are in their living room, some people are in their bedroom, some are in their office, some are on their phone and we get to see the entirety of their house over the course of the day. One of our team of five therapists (we also have two psychiatric RNs) comes on, and we do our check-in. 

Check-in is a little bit like checking in for a doctor’s appointment except that nobody sees your weight or tells you to take off your clothes afterwards. We’re asked a series of specific questions about the last 24 hours (or weekend, if it’s a Monday): what did you do last night, did you have any challenges, what sorts of coping skills did you use, things like that. The two big questions end up being “how are you” and “what do you want to accomplish during today’s session?” The first question seems pretty straightforward, but when you’re in a partial hospitalization group for mental illness, it’s anything but. We’re also not allowed to use any noncommittal answers: no “good” or “okay” or “bad.” Every day, we receive a list of potential mood descriptors that we can use. Instead of “good,” maybe you’re “content” or “reassured.” Instead of “okay” you’re “nonchalant” or “preoccupied.” Instead of “bad” or “sad” you’re “pessimistic” or “lonely” or “restless.” The idea there is to get us to really narrow down our feelings so that we can identify where they’re coming from and what, if anything, will help us cope with them. 

The other question is pretty straightforward, sort of, but we have to give a concrete answer. Something like, for example, “I want to listen” or “I don’t know,” doesn’t work. Things like “I want to gain one new coping skill” or “I want to participate in the discussion once for each group” are much better. It gives us a metric to reach or not reach so that, at the end of the day, we can talk about whether or not we managed it and, if not, what we can do to change that in the future.

We have a ten minute break. I usually run out and use the bathroom and give the kids each a hug and a kiss (and Kyle, if I can reach him above all the kids). 

The next two groups are also divided by a ten-minute break, but they’re more teaching groups, helping us to learn skills that will ease the burden of our mood disorders or addictions or whatever else we have going on when we’re not in group. These are a lot harder to break down into a simple paragraph of description because they run the gamut, everything from watching an Instagram model talk about stream of consciousness writing and putting it into practice to finding five sensory objects that we can focus on when our minds begin to spiral out of control to practical advice on when and how to talk about our mental illnesses with other people, including employers.

Oh, and Brene Brown. SO MUCH Brene Brown. 

(if PHPs and IOPs were boiled down to one gif, it would just be an army of Brene Browns running at you full force telling you that you’re worthy)

I like those groups a lot, especially the ones that offer practical advice and coping skills. It’s one thing to gain those theories of “vulnerability is courage and leads to fulfillment” and “shame is neutralized by the words ‘me too,’” and not that internalizing those messages (which it’s hard not to do when you’re being bombarded by them) isn’t helpful and useful, but having practical advice gives me something I can incorporate into my days and either cope MUCH better with the issues I have or else prevent them from getting as bad in the first place.

For example, one that we talk about SO MUCH is called the 5-4-3-2-1 technique, which I’d heard about before, but it comes up basically every other session at least twice. It’s a grounding technique you can use when you’re having a panic attack or dissociating or feel yourself spiraling out of control. You find and identify (by saying out loud) five things you can see, four things you can touch, three things you can hear, two things you can smell, and one thing you can taste. This gets you out of the panicky mindspace and helps to calm your body down by focusing your mind on concrete things rather than abstracts. I’ve learned to start keeping focusing objects around my desk for those inevitable times when I’ll start panicking or getting too in my head (Kyle is, for his part, not complaining that he’s smelling my perfume more often). 

Another ten minute break (and time for me to take some of my meds), and then it’s our last group, check-out. The questions at check-out follow a similar pattern to those at check-in: did you accomplish what you set out to do today, what is one thing you learned today, what are your plans for tonight, etc. And each check-out ends with the question: are you safe at home? If you seem like you aren’t doing so great, the therapists offer to have someone call and check in with you at some point, and they make sure that everyone who wanted to speak with the psychiatric RNs or with their case manager has done so. 

It doesn’t sound like it would be terribly helpful, but it is. It’s all so simple, but it’s what I–and, I think, all the people in the program–need. It breaks things down for us, gives us very simple and practical ways of looking at our mental health and caring for ourselves so that we don’t feel overwhelmed by the task.

That doesn’t mean we all do really well all of the time. I haven’t walked since Wednesday (in my defense, Thursday and today were rainy, but I have no excuse for Friday), and I had a really bad night last night (more on that in a minute). Mental health is more of a squiggly up and down line than a straight incline–your rough days and good days are going to be all over the place. But hopefully, soonish, the trend for me will be more up days than down ones.

*

Like I said earlier, part of the program is having a psychiatric RN available to help you adjust your medications as needed, and that’s where my bad night yesterday began. 

It was so dumb, really. Yesterday was SUCH a nice day, and I was feeling really good going into the weekend. We didn’t have any concrete plans beyond D&D tonight (I’m skipping because I am just worn thin), but I thought it would be fun to try and get the kids out to a park somewhere tomorrow because it’s going to be really nice. Before doing that, though, I talked with my psychiatric RN about how increasing the dosage of my antidepressant was difficult because the first few days following that increase are always marked by me being really sleepy (or, as they call it in the medical world, “somnolence”). 

“Why don’t you try taking your meds at night instead?” my RN suggested, and I was like

Obviously! If the meds make you sleepy, take them before you’re about to go and sleep! Problem solved! You’ll start getting really sleepy just in time to go to bed, and everything will be happy funtimes!

Ha.

So here’s the thing about my antidepressant: it has a REALLY short half life, about 3-7 hours depending on your dosage and body and whatever. Miss your dose by too long and you’re in for a rough time because my antidepressant, an SNRI, has really bad discontinuation symptoms. We’re talking everything from the jitters to nausea to panic attacks to psychosis. 

I’d experienced a lot of it before, once. I was on half the dosage I’m on now, and I’d forgotten to take my pill with breakfast (this was well before I started using a days of the week pillbox, an accessory that makes me feel like I need to subscribe to AARP magazine but also basically saves my life because depression destroys your memory). I didn’t realize that I’d forgotten for most of the day, and as the day came to a close, I developed a terrible headache, jitters, general agitation, and a very bad mood. I went to bed early, figuring that I could just sleep off whatever this was.

But no, that’s when things got WAY worse. Effexor, my antidepressant, already causes vivid dreams, which has been a lot of fun over the last ~6 years I’ve been on it (I can still tell you most of the details in the yellow house dream or the numerous “we’re going to Disney World but something is going terribly awry” dreams). When the drug isn’t in your body anymore, though, you start having really vivid night terrors. 

When I say “night terrors,” I don’t mean dreams that were logically frightening–those, at least, I could have accepted as waking me up all night long. No, these dreams weren’t even that scary. They were otherwise completely normal dreams that just left me absolutely terrified and certain I was going to die in dreamland. It was around the third bad dream that I woke up in a cold sweat, put two and two together and realized, “Oh, shit. I forgot my meds yesterday.” The next night terror took this information into account and focused on me trying to get to the hospital to get my medication but constantly missing the subway stop, which, in this bizarre dreamworld, was the scariest thing imaginable. 

SO. 

When my RN told me to start taking my meds at night, I knew I’d be in for something of a rough time beforehand, but I figured that it wouldn’t be nearly as bad as the time before because I wouldn’t have to deal with it while sleeping. No night terrors, maybe a headache or some jitters, but I wasn’t missing a dose. I was just taking it later.

I mean, about eight hours later than I’d taken it the day before, but it would be fine, right?

Around the time Kyle and I put the kids to bed, it started. I felt so irritable. Furious scoldings of my children were in the back of my throat, but the withdrawal hadn’t completely kicked in, so I held them in with some deep breathing and visualization. I came downstairs, and the jitters began. I wasn’t shaking outside of my own control, but my arms and legs felt like they needed me to shake and flap them (“why, brain?” I wailed internally. “You gotta,” my brain, the asshole, replied). I tried to ignore it while eating ice cream, but as I took the last bite, a sense of absolute dread descended on me.

If you’ve ever had a panic attack, you know what this is like, but I think everyone has had that kind of fear at some point in their lives, even just as a kid. It’s beyond the usual fear of “haha that was a really scary movie, good thing zombies aren’t real, but I’m going to sleep with this baseball bat under my bed just in case.” It’s that sense that if something doesn’t change IMMEDIATELY, you are going to die, with all of your primal instincts to preserve your life kicking in. And that’s super cool and helpful if you’re a caveman and there’s a sabretooth tiger stalking you, but when you’re a 21st century mom who just wants to get to the kitchen to put away her ice cream bowl, it’s a little inconvenient.

I put the bowl back. I grabbed a bottle of water. I sat down. It was half an hour early, but I took my antidepressant anyway because I couldn’t stand it anymore. And I wish I could say that the relief was immediate, but medication that goes through your bloodstream has to actually get there first, so I had about an hour, maybe more, to wait until the medication kicked in. 

By now, I was shaking like a leaf and couldn’t stop. I took my phone and my iPad out to the living room and flipped on the Weather Channel, not to pay attention (it was something about trucks and snow, I think?) but to have consistent noise. I tried to focus on every exercise I’ve learned to get through a panic attack, and they’d work for a couple of minutes before the panic set back in, because it was physiological not psychological. My brain wasn’t panicking because it was afraid; it was panicking because the medication that makes sure it gets enough serotonin and norepinephrine had vanished from my system, and the only fix for that was to get that medication back.

(psychiatric medications are a trip, let me tell you; this is why you have to taper off them instead of quitting cold turkey, and I 100% understand why it’s so hard to stop using illicit drugs)

Kyle eventually came out to the living room and sat with me and let me talk and talk until I could stop panicking, which was about an hour and a half after I took the meds. Even that was scary at first, because I couldn’t keep my train of thought, and half the time, I wasn’t 100% sure that I was saying words in a way that could be understood either. But the meds did kick in, slowly, and I came down from my panic, slowly. It still wasn’t a great night afterwards, and I felt exhausted this morning, but at least my lizard brain isn’t currently telling me that DOOM IS COMING anymore.

The exhaustion that carried over to today translated into me taking a nap this afternoon, since today was just. Gross. Super humid outside, rain all day (but not the pleasant kind, the kind that gives me a migraine), everything feeling like it was dragging through sludge. And then I was supposed to do D&D tonight, but five minutes in, I started panicking and cut out as quick as I could because I didn’t want to have another attack. 

It’s like. Days where I have the PHP, I’m tired but okay. Days where I don’t, everything goes upside down and sideways. But on the plus side, I’ve been coloring a bunch of downloadable pages and that’s been fun. And it’s still just the end of week one, so who knows. Maybe at the end of next week, I’ll be. Saner? We’ll see.

Two weeks in a chrysalis

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The kids have this book they adore called “The Very Impatient Caterpillar.” As the title suggests, the book is about a caterpillar who has a difficult time coping with the fact that metamorphosis takes two weeks. He tries to rush the process, cries that he can’t last the entire two weeks, but in the end, he makes it and transforms into a butterfly… only to learn, to his dismay, that migration will take a long time, too. 

It’s this book, it’s absolutely hilarious, and I love it.

It’s genuinely hilarious, and it gives us a good lesson to point to when any of the kids need to be a little more patient (after all, we do have to wait for things in this life, even if instant gratification takes too long). Carrie, in particular, has fallen in love with the voices I do for all of the characters and can recite the book without blinking, despite stumbling over a few of the larger words (“metamorphosize” is, after all, quite a mouthful for a girl of only two). 

*

I’m writing this nervously because I know how easy it would be to take the wrong way and be used against me. I file it with other things that could be taken the wrong way and used against me: that time I didn’t teach any Friday classes when I was supposed to, my struggle with getting to the office on time, my list of “incomplete” graduate school classes, my constant panicked running after my student loans, my obnoxiously blossoming weight. 

But.

Today, I learned a thing or two about shame, about how it serves as the critic on your shoulder saying that you’re not good enough, and then saying who do you think you are? And, as it turns out, that critic is just your mind messing with you. That when you allow yourself to be vulnerable, you’re opening yourself up to failure, but you’re also throwing your voice out there to others who are going through the same struggle; your “me too” is the enemy of their shame and allows them to be vulnerable as well, to step into the light and see that the stupid critic on your shoulder is a liar. 

So here’s where I am. 

About a week, maybe two weeks ago, I found myself in a dark place again. I don’t know what precipitated it, except maybe the weight of everything I’ve been doing, from coordinating the kids’ therapy to trying to make the burden on Kyle as small as possible to my own health issues (more on that in a minute) just crashing down on me at once. I’ve been seeing a therapist once a week since May/June, but that Friday, I didn’t want to see her. I didn’t want to talk to anyone. I wanted to go upstairs to my big, comfortable bed, with the AC blasting on me, and just disappear. 

(naturally, only while the twins were napping–after all, doing otherwise would leave Kyle with too much to do, and I don’t want to do that)

Some part of my brain, the part that’s still rational, pointed out that all of this meant I probably needed to talk to my therapist, so I did, and she pointed out that with me still in this dark place, still going back to it so easily, we needed to do something more–the recent increase in my medication and the recent therapy weren’t quite cutting it. 

At her suggestion, I met with a psychiatric RN a few days later, and she took a look at my medications, but more importantly, she talked to Kyle. We don’t always notice when we’re drowning, and Kyle pointed out that I mask so much, even to myself, that it’s sometimes hard to tell; but he’d noticed that I wasn’t doing well. I was struggling to force myself to do things like take a shower. I was sleeping upwards of 14 hours a day and wanted to sleep more. I couldn’t engage with things that used to make me happy. Little problems seemed overwhelming. 

My RN listened to all of this and suggested to me, and to my therapist, that it might be a good idea if I looked into an intensive outpatient program, also called a partial hospitalization program. 

It sounds scary, right? Partial hospitalization. A step more and you’re hospitalized because you’re mentally ill, and that’s a scary thing. That’s something that only happens to people who’ve got it really bad or people who Los Angeles police in the 1930s need to silence or Kennedy daughters whose birth injuries cause them to be a little too scandalous for daddy’s liking or housewives who are more trouble to their husbands than they’re worth. It’s a black mark, a stain, something that can and will be used against you by people who’d rather you not live your best life. It’s a trump card that can be pulled whenever: “Well, I might not be able to tell you the five socioeconomic factors that led to the French Revolution, but at least I’ve never been partially hospitalized.” 

And it’s really stupid that society and our own biases make us think that way, particularly about mental health issues. Someone who has to do 40 hours of chemotherapy isn’t looked down upon or seen as being a hot mess because they’re doing something to heal themselves. Someone who goes to physical therapy every day for two weeks doesn’t have that therapy used against them by assholes (well. Depends on the asshole). Someone who needs a team of doctors to help them solve a physical problem isn’t seen as being weak or having a black mark against them. Why should mental illness be any different?

The prejudices against mental illness and mentally ill people are really stupid when you think about it. I take medication to help my body become less insulin resistant and to make sure that my brain is getting enough serotonin to function correctly. The last time I had bronchitis, I was too sick to get out of bed for a week; this last depressive downswing, I wouldn’t have gotten out of bed at all if the kids didn’t need me. Yet my metformin and resting for my bronchitis are seen as necessary steps for my health, while my Effexor and resting for my depression are seen as weakness and laziness, respectively. 

Which, really, is why I’ve been reluctant to write about this. I’m afraid that somewhere, down the road, someone will find this blog post and use it against me. But that said, I think odds are greater that someone, somewhere, is going through this just like I am, and they think that they’re alone, and they feel ashamed for letting it get this bad and ashamed for having this black mark on their record. 

So, to you, whomever you are: you’re not alone. I signed up for the partial hospitalization program. 

It looks very different, I think, from how anyone would expect. I’ve been calling it a “class” to people who don’t need details (like my kids’ therapists; their ABA therapist had the misfortune of overhearing my entire first meeting on Friday because my computer fritzed out right before I joined the Zoom call). About 15 people, all ages, all walks of life, get together every day on Zoom for four hours with 10 minute breaks between sessions. We talk about our struggles and coping mechanisms, and we have psychologists who work with us to learn better coping skills, to rewire our brains so that the world isn’t as heavy, to hopefully move towards wellness. We have a psychiatric RN who monitors our medications and checks in with us to see how the side effects are. We’ve watched several TED talks. We take notes. We compare situations. We work with and for each other. 

It’s not a perfect situation, and today was only my second day in the program. Most of what I’ve been learning has been telling me where my issues originate, not how to fix those issues. 

Which, like. It’s the second day. 

And I’m journaling. I have a really cute journal that I decorated with stickers because it made me happy to do so. 

I took a walk today, only for about 7 minutes because my ankles were screaming at me, but I did it. I took a shower this weekend, and my hair is clean. I ate an apple for breakfast. 

I’m trying to make myself feel obligated to do these things so that I keep doing them, because I know they’re good for me. I know that they’re helping me, even if it’s not an overnight change. And I’m content being in this two week partial hospitalization program, because it’s like the impatient caterpillar’s chrysalis: it’s a safe place where I can deconstruct what’s brought me to this point and hopefully rearrange it into something more beautiful. 

And then maybe I’ll migrate.

*

Physical health wise, things are… interesting. I’ve been having lower left pelvic pain for ages now, more than a year, and I don’t know what’s causing it (ER reports that it was constipation are strongly off the mark). I’m supposed to see my gynecologist next week to try and figure out what’s going on, and that might require some surgery (nothing major, just putting a camera inside of me to look around, because as it turns out, this level of pain isn’t normal). I’m not even sure that it’s a gynecological issue. It could be my gastrointestinal tract finally deciding that it’s through with cheese (please no). It could be my hips suffering after bearing the weight of twins for 34 weeks. 

BUT the fact that it flares up most frequently around when I ovulate and around my period makes me think that no, it’s something gynecological, and I’m hoping something easily fixed. The last thing I need right now is to find out that I’ve got like. Cancer of the everything or something. 

Anyway. That appointment is on September 1. After that, health-depending, it’ll be time to start Sam’s school year and push on until the insanity of 2020 finally goes away. 

Which it will. We just have to be, well. Patient. 

Brought to you by the letter D

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Hello.

It’s been a Time, let me tell you. Two weeks since I last wrote, and everything is happening so much.

Drugs. I’m not talking the ones that you were warned against in the fifth grade (aside: when we had D.A.R.E., it was before there were any mascots or anything, and all we had was this… “music video,” if you can even call it that, of what we were supposed to believe were police officers singing, “Dare! For keeping kids off drugs!” and then this guy in the background would radically wail, “KIIIIIDS OFFFFF DRUUUUUGS,” and I will tell you that I do not remember anything about the program besides that specific snippet), but the ones that you get prescribed from your doctor. 

When I went to my OB-GYN for my crisis of intrusive thoughts, he had me talk with a behavioral health specialist (which is the new name for a shrink), and said specialist both prescribed me counselling and called my primary care doctor to request an increase in my dosage of my current antidepressant, Effexor. I had been taking 75 mg (the lowest possible therapeutic dosage), so now I’m up to 112.5 mg, which means two little capsules every day instead of one. About a week after that, I had a psychiatric medication review with a nurse whose job is doing only that ever to see if I should continue with the Effexor or if I should switch to a different antidepressant and/or take something else as well. This was a lot like my therapy intake appointment, where you just go through alllll of your issues, realize how long they’ve been issues, and feel like somebody’s just peeled your emotional skin off for a minute. 

Like. Normal therapy gets into these issues, but it’s a slower and more gradual process. Intake appointments get to the heart of things all at once. No slow, gentle “so what was it like during that one specific afternoon when you were eleven and those five boys in your class called you ‘ugly’ while you waited for the school bus?” but more of an “OKAY SO YOU’VE EXPERIENCED INTRUSIVE THOUGHTS SINCE YOU WERE ELEVEN AND HAVE HAD SUICIDAL THOUGHTS SINCE YOU WERE A TEENAGER, SOUNDS LIKE CHRONIC SUICIDAL IDEATION, NEXT TOPIC.” 

Anyway, the nurse (who was excellent; very to-the-point, and also very practical) ended up prescribing me a sleep aid called Trazodone to theoretically cut down on my bedtime insomnia from 2ish hours to 0ish hours, and I’ve been on that for about a week. I want to say that it’s working (especially in conjunction with Kyle and my decision to start taking melatonin at bedtime every night in very tasty cherry gummy form), but I honestly don’t know. I’m forcing myself to be more well-rested, by which I mean that I’m refusing to take afternoon naps even when circumstances would allow me to (read: no appointments for anyone, either virtual or physical), but I can’t tell if anything is working well because Sam’s in an anxious streak and has woken us up one way or another basically every night for a couple of weeks now. 

(more on that in a minute)

So that’ll be fun to talk to my therapist about. Meanwhile, I’ve also had an appointment with an endocrinologist (not a reproductive endocrinologist, because while I’m 100% for snagging one more girl out of our freezies, we need to pay the $3500 to have them tested and have Kyle actually employed before we strike on down that path) to try and start getting my PCOS better under control. Last October, I spent a day in the ER with agonizing pain in my lower left abdomen, which the ER diagnosed as constipation (even though, and this is TMI, I was and am regular for basically the first time in my entire life) but which my OB-GYN figured was probably related to my PCOS. We went down a path there of trying progesterone-only hormonal birth control (review: too much breakthrough bleeding, too much depression, nowhere near enough pain reduction) because I’m prone to migraine with aura, which makes me a poor candidate for estrogen usage; and I got a referral to the endocrinologist to see if we could make my hormones start behaving. 

That appointment was supposed to happen in either February or March, but either I was sick as hell or it was during the Great Cancellation Of Things, so the appointment proper didn’t happen until this month. After we talked about my symptoms (I am quite fat, I have wonky periods, I am very hairy, acne is my constant companion, getting pregnant was a pain in the ass, and my ovaries have the distinct “string of pearls” cysts on them), my endocrinologist ordered about six sprillion blood tests to check how my hormones were doing overall. Everything is consistent with PCOS (absurdly high testosterone, which I wish I could donate to some trans men out there, and hallmarks of insulin resistance though not diabetes), so she’s starting me on metformin (500mg to start, gradually increasing to 2000mg/day) to combat the insulin resistance, and I’m adding that to my daily regimen.

Basically, I’ve reached a point in my life where everything is measured in various pills; and that’s not even counting my migraine meds (because I only really take those when I manage to catch a migraine starting). And honestly, I don’t mind it much. There’s some faux wisdom about blah blah blah, being medicated is bad, makes you conform, something something 5G Bill Gates QAnon bullshit (or, on the other side of things, “all you need is fresh air and a positive outlook, plus maybe some crystals and essential oils!” Or both. Silliness has no boundary), but it’s like. Maybe I like not feeling like garbage. Maybe I like it when I’m able to spend an afternoon writing a blog instead of sleeping. Maybe I want to treat my body’s hormonal wackiness. Maybe I want to have the ability to feel genuinely happy, because depression has stolen that from me, and if I need medication to get that back, I will literally take all the pills. 

Like not to feel happy all the time. That isn’t how things work. I just want to be able to look at the days and weeks to come and not feel like I’m drowning. 

BUT ANYWAY.

Dads. This weekend was both Father’s Day on Sunday and Kyle’s birthday on Monday. I’ve spent a decent amount of time, therefore, baking and also organizing gifts and cards and the like. 

The baking was the fun part. I love baking; it’s one of those things that, if you know a few tricks and are very precise with what you do, people will love you for it. Kyle’s cake, catering to the things he adores in a dessert, was a red velvet layer cake with a s’mores filling (marshmallow fluff mixed with crushed graham crackers and mini chocolate chips) and decorated with rich chocolate buttercream, marshmallows, graham crackers, and candy bars. I don’t like to say that I’ve outdone myself when I bake something, but this time, I absolutely outdid myself. 

I also outdid myself showering Kyle with multitudinous gifts, each designed to remind him of one of his kids when he used it. From Sammy, he got the game of Sorry, because we pretty much just play board games with Sammy (Sorry is… not anyone’s favorite right now because it’s really frustrating independent of anyone taking revenge on anyone else, and we’re all learning valuable lessons about not trying to stack the deck, because the game Knows). From Isaac, he got what’s called a dice tower; it’s basically a better way of rolling dice that resembles a marble game…

…and makes satisfying “click clack” noises as the colorful math rocks descend. Isaac loves putting things in things, especially if that act creates a Noise, so the idea of him giving a dice tower was just irresistible. And from Carrie, Kyle received some of those colorful math rocks, specifically a dice set with pink and purple butterflies because that’s just who she is. Sparkles, pink and purple, butterflies, rainbows… that may change in the coming years, but for now, she’s my girly girl. 

Lockdown has been easing in a good way here in Massachusetts–at least out in our neck of the woods, people have remained compliant with mask orders, so some things are somewhat back to normal, and we’ve felt comfortable enough the past couple of weekends to go and visit my parents at their house (even though our house is now visitable with its delightful couches, we wanted the twins to get some time at their grandparents’ house, since they haven’t had much time there at all). We went there for Father’s Day on Sunday and enjoyed some takeout from Outback Steakhouse and some good visiting. My dad and Kyle both got cards signed by all three kids (some more legibly than others), and I got my dad a book of Dad Jokes, because he is the absolute master of them. 

So it was a good weekend with a lot of normalcy, and that was really good for my mental state. Yesterday, for the first time in I don’t even know how long, I felt wide awake without having to go and take a nap when the twins did (I try not to nap when the twins do, but usually when that happens, I end up so tired throughout the afternoon that I can’t function; that I’ve been able to go several days without feeling like I need a nap–today excluded for being a migraine day–has been really nice). I also managed to go out and run some errands like the world was back to something resembling normalcy and not just. Chaotic.

Problems have even started being more normal, too, specifically where Sam is concerned. He’s had a loose tooth for several months, as you do when you are five, and it got really loose the other day, probably earlier than it should have. I guess he bit down too hard on a piece of bacon, and that pulled his tooth away from the gum and, apparently, exposed a nerve. The dentist told us there’s nothing for it except to give him Tylenol or Motrin and Orajel, because pulling it before it’s ready would cause more problems than it would solve.

The trouble is that this small adventure has caused a lot of anxiety for Sam. He’s understandably wary about eating now, because his tooth hurts–last night, despite us having his favorite noodles for dinner, he sobbed hysterically and refused to eat them because he was afraid. And then tonight, he sneaked down to snuggle with me when he was supposed to be in bed and told me, “I know I’m supposed to be happy about my loose tooth, but it hurts so much, and I’m really kind of mad at that bacon.”

I told him that the only way he’s supposed to feel is how he does feel–that it’s alright and even makes sense for him to be angry about this happening, because losing your first tooth should be exciting, fun, and painless, not scary and painful. 

And then he wanted to talk about spiders, because he’s six.

His pediatrician recommended us to a therapist to try and help him cope with anxiety better–I think his is worse than it should be because he’s got parents who are prone to anxiety, so there’s that natural tendency to pick up on it, and since the two of us are only just learning healthy coping skills, it’s hard for us to teach him. With any luck, speaking with a therapist will give him tools to use now so that he can grow up and have a handle on this instead of growing up like we Millennials do. 

So we’ll see where it all goes. But hopefully, it’ll go good places. Until then…

The Gremlins

/ lovescienceandnat20s / 1 Comment

Hey, guess what, here’s a TRIGGER WARNING, because I’m going to talk about my depression, and it’s going to be raw and real, so if you have a hard time reading about suicidal ideation or depressive psychosis, please click the little X on your tab. Please also click the little X on your tab if you’re the type of person to make “lol triggered” jokes because fuck you.

Right, so anyway.

I know I’ve talked about depression a lot, but not in a while, because for a really long time, I was doing really well. My meds (Effexor, specifically) were doing their job, I was feeling pretty good about life, even my hormones weren’t stopping me from being healthy. Ish. I still don’t have the high levels of serotonin required to make a cutesy Zoom video (and, in fact, the handful of video collabs I’ve been invited to participate in since quarantine started have whooshed right by me, for which I sorely apologize), and my energy levels have stayed steadily somewhere around “engages kids in play but only if it doesn’t require a lot of frolicking on my part.” I’d been mercifully free from downswings for years, even in the postpartum times, and I’ve been feeling genuinely optimistic, despite the world being a dumpster fire in a lot of ways. 

And then 2020 happened.

I felt the first hints of a downswing in January, when the president decided that starting World War III over Twitter was a great idea. It wasn’t anything severe at the time, more of a few nights panicking while trying to fall asleep and thinking, “Really. Fucking really. I cannot emphasize enough how little I and everyone else in existence want this, and yet it is happening, and it might result in massive casualties on all sides and nuclear winter. Yayyyyy.” 

But it passed. 

And I might’ve gotten through the year without a downswing, despite everything. The nonstop rush of everything happening so much that’s the modern newscycle has actually been good training for me at getting righteously angry while also being able to distance myself when I need a mental health break. We donated to help Australia recover from its wildfires, I spent most of the winter in bed because of bronchitis or norovirus, and once I’d recovered, I went into Sammy’s class twice to read him books. When I wasn’t sick, I went to the twins’ playgroup every week, and as exhausting as it was, it was good for me, because it was getting out of the house and doing a thing. 

But then Covid-19 came. 

And I hate talking about it as a catalyst for my depression getting worse, because it’s not like I’ve really suffered all that much from it. I have a dear college friend who’s an ICU nurse, and the fact that she’s not just rolling over into a ball of nope every day astounds me. I know people who’ve gotten sick themselves or lost friends and family members. By comparison with all of the above, I should be fine: I’m just homebound. That’s all. 

But depression doesn’t work that way. Instead, it sees patterns and recognizes those patterns as itself. For me, the pattern that pushes me into a downswing is monotony. If there’s little to no change in my day-to-day life, it gets hard for my brain to produce serotonin, no matter what good things are happening, like birthdays and new couches and D&D on the weekends. And I knew the second the Commonwealth started locking down that things were going to get ugly. I hoped that maybe, just maybe, the fact that I’m still on my antidepressant might keep things from getting too ugly, that maybe I might be able to come out of this with the lack of depression that makes sense for someone who’s not really suffering from the situation, just bearing emotional weight for the people around her.

I pushed through it as much as I could. I put off talking to someone as long as I could. What were they going to do, give me medication? Tell me that I could start therapy as soon as things were over? I didn’t leave the house because I’m prone to illness induced asthma and got bronchitis just a few months ago. My days fell into the same routine, even once Isaac’s ABA started and we had people coming into the house. The added pressure of keeping up with the twins’ Zoom call therapies didn’t help things at all, especially when I kept missing therapy sessions because I lost track of who was meeting when. Our poor services coordinator texts me at least once a week asking, “Are you still able to meet today?” when I’m 10 minutes late for our Zoom meeting because of basically no reason. 

I got through half of March. April passed by. We had Easter. We stayed in our routine. We were good. We didn’t leave the house to do anything but get groceries once a week. We washed our hands all the time. We made Isaac’s ABA therapists wash their hands the second they came into the house. We wore masks. Kyle worked twelve hour days, seven days a week, to keep up with a new project his old company was doing to help with Covid. 

And then, on April 30, he was laid off. 

Maybe that was the catalyst for the spiral; or maybe it’s that March, April, May, and June are usually my busiest months, spent obsessively organizing birthdays and anniversaries and holidays, and this year, I’m basically just sitting on my butt, doing nothing. I don’t really know. 

I just know that one night, I was sitting on my new couch, watching my kids play, and suddenly, it was like a little gremlin in the back of my head, saying, “Isn’t it a shame that you can’t want to die because of your kids?”

I should’ve seen it coming, probably. All of my previous hobbies have gotten kind of lackluster to me. I can’t disappear into writing anything anymore. None of my video games are fun anymore. I can’t make myself get up and read a book anymore. Even looking around at the mess in my house that needs cleaning makes me feel frustrated and empty, like why even bother when we can’t get it done while the kids are here anyway?

But there it was, that first intrusive thought, something I haven’t had since I started Effexor. More followed, usually late at night when I was trying to fall asleep. They really were like little gremlins sitting in the back of my head, saying things I didn’t like. “You know,” they said one night, “if you told Kyle you were going to take a nap, you could sneak up here and do it in a way you can’t sneak away any other time.” 

And the rest of my brain was screaming, “But I don’t want to die!”

Another time: “Let’s google ways of doing it painlessly, because pain isn’t fun.”

And the rest of my brain was screaming, “Dying in general isn’t fun either!”

I’m not a self-sacrificing idiot. I did some googling, not of painless ways to die, but rather of potential side effects of all the medications I’m taking. My birth control pill had listed under its name, “Contact your doctor if you experience new or worsening depression,” so that was the first step I took, calling my OB-GYN and saying, “hey, I don’t know if this is because of the progesterone or anything, but…”

And in a heartbeat, although Covid still mattered, it didn’t matter. Immediately, my doctor set up appointments for me to come in and see him. At the same time, he set up an emergency triage with the mental health department, which made the appointments kind of weird: I sat in his office having a pelvic exam, PAP smear, endometrial biopsy, and polyp removal (owwww), and then I went into another room and had a phone call with someone from behavioral health to make sure I wasn’t in any immediate danger.

And I wasn’t, because the gremlins aren’t terribly convincing, but they’re still present, so the mental health provider set me up with one of her colleagues, and we spoke on Friday.

The first appointment with any new doctor is an adventure, because you have to go through your medical history with a stranger and talk about how you’ve only ever smoked tobacco once and it was a pipe in college and it was terrible, and how having three kids and taking progesterone to help with PCOS means that your sex life is a craps shoot as to whether or not it exists and so on. 

The first appointment with a therapist, though, is basically an emotional debridement. You don’t just talk about your physical health and history, oh no. You have to go through the history of your mental health, which means delicately going into your background and realizing, as you talk things through, that maybe you haven’t been as okay all along as you previously thought. Like for example, your therapist asks, “How long have you had intrusive thoughts like these?” and you start to answer that it’s just been in the last couple of years, but no wait, you remember them in college, and no, they went back farther than that, and suddenly, you realize that you were having intrusive thoughts as a kid, and you were so scared of them because you grew up in a church that preached demonic possession and didn’t want your parents to think that you were possessed, so you kept it all to yourself. 

“What were they like as a kid?” the therapist asks, and at first you think you don’t remember, but then you do remember the thought of wouldn’t it be nice to get hit by a car or be sick in the hospital so that everyone would feel sorry for you. “What a weird thought!” you say laughingly, and the therapist says, “It sounds like you subconsciously wanted to ask for help but didn’t know how.” 

So you have to absorb that while also chatting about yes, things were better for a long time after you started meds, but now they inexplicably are not better anymore.

It’s a lot. And as you’re raw from letting this all sink in, the therapist remarks, “I think you’ve got severe depression and depressive psychosis, and also your meds don’t seem to be cutting it anymore. I’m ordering a medication review with your PCP and one of our prescribing RNs to see if we can’t find something that will work better for you. And you and I are going to talk again next week. In the meantime, here are some crisis numbers. Please make sure you’ve got them on hand and make sure your husband has them in case there’s ever an emergency.”

And you’re like, oh, I guess it’s worse than I thought.

I’ve got a lot to unpack over the coming weeks and months, on a lot of levels–judging by that, more than I probably realize. Having therapy to look forward to is helping in the short term, but in the long term… I don’t know. I just want to feel hopeful again, you know? 

Anyway. I didn’t write any of this as a ploy for sympathy or to try and divert attention from infinitely more important causes (and if we’re friends on Facebook, you know where my mind’s been this past week), but just because I want to be honest on this blog, as I always have wanted, and that means sometimes telling some hard stories. So there you go.

Pandemic Dreams

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These are stressful times, friends, and stressful times mean weird dreams.

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I’m already prone to weird and vivid dreams. Effexor, my antidepressant, tends to make weird dreams a Thing, and in the five years I’ve been on it, I’ve had some real doozies. Sometimes, they relate to what I’m dealing with in my waking life, but more frequently, they’re just really weird. They’re occasionally good, rarely bad (and when they’re bad, they’re really bad), but mostly just vivid, to the point where they embed themselves in my psyche for years and years. 

So. Combine my innate tendency towards weird, vivid dreams with these weird and stressful times, and let’s just say that my nights have been… fun lately.

*

At first, my dreams weren’t bad at all. In fact, they were very reassuring and heavily thematic. Every night, I had a slightly different dream about moving with my parents and siblings (and sometimes Kyle and the kids) into an old house in my hometown. Now, when I say “old” I don’t mean “I used to live here!” old but rather “wow, I think George Washington may have lived here” old. Old, as in “this is about as old as a white person’s house can be in this country.” Old as balls.

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As houses that are old as balls tend to be around here, these houses were severely haunted, none more so than the one built beside a CVS and just down the street from my favorite pizza place. It was within walking distance of the high school (which I still attended in my dream), and the ground around it was stark and dusty, like the house had drained the land of its very life. The house itself was solid, dark brown, with a front door as vibrant red as ripe strawberries. 

Inside, the house made its hauntedness more than apparent. Ghosts lurked around every corner of its twisted interior, an interior that kept changing shape to suit the house’s moods. Getting upstairs was a challenge, because you never knew where the stairs would turn up. One minute, the stairs would begin in the kitchen and lead to the back yard. The next, the stairs would start right inside the front door and lead to the roof. 

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The door to the basement remained static, though, ominously so. It didn’t move because it didn’t have to move, you see. It radiated an ominous energy that should have threatened away anyone curious about what was in the basement. The darkness wasn’t visible; it was palpable. Whatever lurked behind that door seethed malevolence. It needed the world to know that nobody was welcome inside.

Nobody, that is, except me. 

In my dream, I went through the door without the slightest bit of fright, and when I did, the house rearranged itself for me specifically. It created a sanctuary for me with a huge writing desk, lively green plants, and soft amber lights all around, as if the desk on its pedestal was situated in a field of stars. Perhaps the house was haunted, and perhaps the presence haunting it was malicious, but that old house (built in 1716, I remember clearly) accepted and embraced me. Even if it rejected everyone else that came inside, it wanted me to know that I was home within its walls.

*

Travel has been common in each stage of pandemic dream series. This first series transitioned with a dream about touring the world with a subset of my college choir, all girls. We took a ship from various ports, but then had to drive from China to Russia in the middle of the night, escorted by the mafia. We passed at lightning speed through a forest of impossibly tall trees, so dark and enormous that their tops melted into the black sky above. 

Once we arrived, we were given quarter in another old house, this one renovated within and not at all haunted. “I’d like to live here someday,” I remarked to the old house’s owner, who spoke with a British accent (apparently, the actors in my dreams can’t do Russian accents). “It’s a little odd, but it’s a very nice house.”

“Perhaps you shall someday,” he answered. “Perhaps you shall.”

*

As the pandemic has continued, and we’ve all coped with Schrodinger’s virus (which we must all act as if we have, so that we cannot contaminate others, but simultaneously as if we’ve never had so that we cannot be contaminated ourselves), my dreams started to change shape. Everything remained haunted, but the comforting feeling of the old house vanished to be replaced with malevolent haunted dolls.

Haunted dolls have always fascinated me. I’ve never had a fear of dolls like a lot of people; in fact, I’ve always loved dolls, and haunted dolls just added a layer of fun to the whole idea. My best friend in the third grade had a whole room full of dolls, those porcelain ones that are always possessed in the movies, and I loved them and the delicious shiver of fear I felt when she’d tell me scary stories about the ghosts she saw moving outside of her window. 

Most of the haunted doll dreams have blurred together, save for the first and the last. The first involved a doll my mother and I found about twenty years ago while we were on vacation in Maine (because of course; there’s a reason all of Stephen King’s stories take place in Maine, and it’s not because he’s lived there most of his life. It’s because Maine is scary). My mom and I used to go antiquing during our annual family trip to the lakes region, and on this particular trip, we found an ancient doll that had obviously been very loved but looked very deeply cursed. We agreed that it was probably possessed by something and left the store, never to return.

Well. In the first haunted doll dream, that very doll started following me around, and I couldn’t get rid of it. It didn’t do anything to me; no Chucky-esque murder sprees here. It just followed me around and delighted in popping up whenever it knew its presence would shock me the most. 

It was, in short, an asshole.

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There were a few more haunted doll dreams, and then, earlier this week, the last haunted doll dream. 

This dream took place in London, which I’ve visited about five times in my entire life, never long enough to really get a sense of its vibe beyond the neon tourist glow of Piccadilly Circus and the double decker buses pointing out where the king used to have people beheaded. Based on my dreams, though, London is very dark with amber lighting, except near the airport, where the dark sky gives way to white clouds and surreal glowing interiors.

In this particular dream, I was trapped in a market–not the covered market I knew from my days in Oxford, but a hybrid of a ballet school and a supermarket (don’t ask me, I don’t write these things). I didn’t want to be trapped there; I knew that I wouldn’t be able to leave London if I stayed much longer, because of the pandemic, and I knew the last flight out of Heathrow was leaving soon. 

But I was trapped, and I was trapped alongside a boy and another girl (we were all young at the time), all of us in the bodies of dolls. People passed us by and we silently screamed at them to break us free, but they never listened. I don’t know where my real body was.

Night fell, and it soon became apparent that the other girl doll was behind the boy and my entrapment. The boy and I were from modern times and very much alive; the spirit possessing the girl doll was far older, far angrier, far more dangerous. Perhaps she’d trapped us within the dolls because she wanted company in her curse, or perhaps it was just aimless maliciousness. Whatever the case, we struggled with her atop a flight of stairs and through a hallway with doors leading to a candy shop and a cafe. Her fate, we agreed, was horrible, but that didn’t allow her to condemn us to the same miserable future.

Rain began to fall. It looked as if the girl might have the upper hand, but she slipped on the stairs and fell screaming to the cobblestone pavement below, her face shattering as she landed in a shallow puddle. As our porcelain skin reverted to flesh, the boy and I could see her spirit lying in the puddle as well, defeated and destroyed, growing slowly mistier and mistier until it faded away.

But I still had to catch my flight, doll or no doll. I raced through London; the streets went from black to grey to white, and  I finally reached Heathrow airport. The last flight out was leaving the next morning, and they offered me a room in the glowing hostel nearby. As I checked in, stowing my luggage behind the front desk, the desk clerk remarked that I looked terrible. I laughed. 

“You have no idea,” I told her.

*

I took a nap yesterday (because I didn’t sleep the night before for reasons that are far beyond my comprehension), and I knew my dreams were shifting theme again because I had a travel dream. 

I went to Disney World, as we’re planning to do this fall with my parents (assuming the Rona calms its tits before then), and I’d arrived before anyone else, including Kyle and the kids. 

(don’t ask me how that happened)

I waited for everyone in the lobby of our hotel, which was enormous–miles and miles of carpet and lacy white walls and enormous windows showing the warmth outside. Terminals every few yards listed the arrival times  of various modes of transportation alongside the park hours; each terminal had a circle of seats around it, and one even had a stage in front of it. 

I mention the stage because it was home to, of all things, the entire cast of Lord of the Rings, or at least the Fellowship. They were as beautiful in my dream as they’d been in the theaters 20 years ago, but they also glowed silver, which I assume none of them do in real life (maybe; I’m not really sure. If anyone knows anyone who was in Lord of the Rings, could you let me know if they glow in real life?). I hugged them all, and I lingered in Aragorn’s arms a bit longer than I probably should have.

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(wouldn’t you?)

Afterwards, I grew tired of waiting for my family and settled down in a gondola. I didn’t want to go to a park; I just wanted to ride in the gondola, and I did, around and around, enjoying the views of Disney World from my moving room in the sky.

*

And then there was last night, the only truly thematic pandemic dream.

Things started logically enough. Kyle and I had the kids in the van, and my mom was with us. We were rushing to get Kyle to a commuter rail station so that he could get to work on time; despite the pandemic still being a thing in the dream, he had to go into work, so maybe this dream was about the future.

But the commuter rail station was closer than we thought it would be, and it was right next door to my favorite local supermarket, Wegmans. “We might as well do some grocery shopping while we’re here,” Kyle remarked, and added, “Why don’t you go in? You haven’t been shopping in a while.”

(I haven’t been shopping in a while, it’s true)

So I went in. I was bolstered, emotionally, by the things I saw as I walked into the store: entire pallets of Charmin and Angel Soft toilet paper being brought into the store! Was this really happening? Was the earth really healing?

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Yes! I got inside and found that, while the store’s shelves weren’t full, it still had a far more robust selection than most stores I’ve seen and heard about in the last several weeks. I got stuck in the pasta aisle, dumbfounded by the wide selection, thrilled at the idea of buying as much parmesan cheese as my cart could carry. I guess I’d been there too long, though, because Kyle and my mom came inside with the kids and another cart to get me back on track.

We bought everything. Candy, soda, pasta, so much toilet paper. And not just toilet paper, two ply! Really good, cushy toilet paper! We bought fresh fruits and veggies, canned fruits and veggies, frozen fruits and veggies, and food for Easter. The only blip came when we were checking out and Kyle pulled six pounds of ground beef out of my cart.

“They were on sale!” I told him, pleased with myself for finding such a deal.

He clucked his tongue at me. “This,” he said, “is ground chuck. It comes from the chuck truck. I don’t like chuck truck chuck.” 

And then he went and put the chuck from the chuck truck back on the chuck truck chuck shelf. 

*

Anyway. There’s no point to this entry beyond that (a) this was a really fun writing exercise, and I hope that you really got a sense of these dreams the way I experienced them, and (b) these were some really weird dreams, and I’m looking forward to seeing what the rest of this weird time brings me while I’m sleeping. 

Clinging

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“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words-
And never stops – at all –

And sweetest – in the Gale – is heard –
And sore must be the storm –
That could abash the little Bird
That kept so many warm –

I’ve heard it in the chillest land –
And on the strangest Sea –
Yet – never – in Extremity,
It asked a crumb – of me.
(Emily Dickinson, “Hope is the thing with feathers (314)”)

I was initially doing okay with all of this, and ultimately, it was the thought of a longterm social distancing adventure that drove me to snap with rage that disappeared as quickly as it had come. 

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(this happened, like, a week and a half ago)

I can’t remember what set me off, but I think it was Kyle saying the words “…if Disney World is even open by then” about our trip that’s coming up in November. The idea of living life like this the entire rest of the year just made something break a little in me, and I sort of snapped at him in that way moms do when we’ve been carrying it all inside to keep the rest of the family from seeing, because it’s fine to vent to your partner when they’re available, but the emotions show up whenever anyway, and you tamp them down because you don’t want your kids to be scared or pick up on you freaking out.

But eventually, the dam breaks a little.

I snapped, and then it was gone, and I’ve been about as fine as I can be, considering the circumstances, ever since.

That sounds like I’m dismissing things, and I’m not trying to. I’m feeling the emotions everyone’s feeling: grief over the world changing overnight into something unrecognizable. Rage about politics. Fear about what’s coming next. But I feel like I’ve got a better handle on it than I did before, when I was still hovering in the “denial” stage of grief about everything. 

(and anyway, I will eat my hat if Disney isn’t open in November)

Which is all good, because we’re kind of floundering a lot with many bizarre emotions in this house.

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Anxiety is, understandably, the big one. I think I’ve got an okay handle on that because yay, antidepressants. Venlafaxine will probably be the reason I go crazy if the world ever does end properly, but for now, I’ve got a healthy supply of it, and it turns my anxiety into either really vivid crazy dreams or just really pleasant but unrelated dreams. Last night, I dreamed about characters from the soap opera One Life to Live, which I never even watched when it was a thing that was on often. The dream also took place in a therapist’s office, but that’s it. Nothing otherwise notable about it. No portentous 19 crows or anything like that.

Nobody else in this house is on antidepressants, which creates some interesting situations, most of them with Sam. He doesn’t have a completely firm grasp of what’s going on, but he knows that he can’t go to school, he knows that his school year is probably over as he knew it (they’re saying schools are closed until May 4, but I’ll be very surprised if they reopen before summer break), and he knows he misses his friends and teachers.

So, of course, he’s scared.

It mostly comes out at night, and he’s too old for the magic jar of dirt stuff I did when he was younger. Too smart, too. He doesn’t believe it when I rub lotion on his hands and tell him it will protect him from bad dreams, because his anxieties are too big to be vanquished with some love and lotion. He knows that the world isn’t the same, and will never be the same again, and it scares him. 

He gets out of bed every night after he’s been tucked in. We talk to him, we hold him on the couch, we tell him the truth, but we sprinkle it with generous doses of hope, because he needs that. Still, he’s scared. 

He’s kind of shut down about homeschooling, and I’m not sure what to do about it; worse, I’m sort of limited in what I can do about it. He’s in kindergarten, and he’s covered most of the basics he’ll need before first grade in the fall (this will have reached some sort of equilibrium by fall or I am punching this virus in the face myself), so I’m not terribly worried about him falling behind… but I still want to try and help him learn things while he’s at home. 

He does alright for about two days when we give him a new routine, but then on day three, he decides he doesn’t like this anymore and has a meltdown. Which… okay, fair. Maybe he should just have Wednesdays off or something? The routine was, briefly, some yoga and then a video about a subject he liked, writing a sentence about the subject, then doing math. And, of course, forever checking his messages on Facebook’s messenger for kids (he’s got a long distance friendship blossoming with my friend’s daughter, and it’s basically destroying me with cute). 

I feel bad. I wish that I could be 100% there for Sam, but the twins are another adventure during this, my everyday adventure that hasn’t changed in the slightest, except that Kyle is home for that adventure all the time now, so lunch and naptime are both easier.

But the twins seem to sense that something’s amiss as well. They don’t like to not be on my lap, which makes trying to help Sam with literally anything a struggle, particularly because the twins are not small anymore. They’re two now, had their birthday less than a day after the state started shutting down altogether. Our plans to take them to the aquarium were dashed.

Everyone senses that something’s up, and nobody can really parse their feelings on it. I can’t either, but I’m trying to at least throw positive shit out into the world to see whatever glimmers of hope will stick. 

That mostly happens outside. When the weather permits, we throw jackets on the kids and take them out to the front lawn to run around for a little bit after dinner (the backyard is a disaster area, and before all of this, we were going to see about hiring someone to clean it all up for us).

The twins like to run to the edges of the yard and get caught. Carrie especially likes to look at our crocuses nosing up through the dead leaves and greening grass, and Isaac likes to watch trucks rush past on their way to the farms up the street. 

Sam likes to run, just run. He runs from the porch to our big oak tree back to the porch then to the mailbox and back to the porch and to the lilac bushes and back to the porch. Being able to run with abandon helps him, I think, because our house is not a jungle gym, no matter what he thinks.

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I try to plan for Easter, such as it is. We have candy from the Easter Bunny, or at least half of what we’ll need (the other half I need to order from our local candy shop, which is taking orders but not in store shopping). The kids need nice Easter shoes, because even if we’re not DOING anything, I want them to look cute. It’s the twins’ first Easter able to do anything besides be confused about “why is this basket on my desk?” 

I mean, they’ll still be confused, just about more things than “why is this basket on my desk?”

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Nothing is normal, but it’s the new normal for at least the next month, probably longer, at least if people are smart about this. I’m still working through my feelings about everything, kind of picking at them a little bit day by day and seeing how my dreams/nightmares play them out. I think the only real waking fear I have is not about famine or a lack of toilet paper or anything like that but of getting sick myself, knowing that my lungs are kind of crap and that, at the very least, I’d likely be one of the young people ending up in the hospital and on a ventilator, away from my husband and kids for weeks on end. Without the kids, I think I could stand it, but just knowing what it would do to them…

I have a friend who’s an RN in an ICU, and even though I don’t really pray, I pray for her, to anyone or anything that might be listening. She has three kids, just like I do, two boys and a girl. She can’t even snuggle with them anymore, not until this has all passed, and it breaks my heart for her. 

Basically, I just want everyone to hurry up and stay home and behave. I saw a post earlier about this whole thing being like when you were in elementary school and some kids just wouldn’t stop acting up, so you kept losing more and more recess time, even though you weren’t doing anything wrong. Maybe it wasn’t fair, but the teacher couldn’t let the kids who were behaving outside while she stayed inside with the kids who weren’t behaving. So you watched as the bright spot in your day was gradually eaten away because people didn’t know how to act. 

Maybe it’s because I tend autistic, or maybe it’s because it’s in the nature of the oldest child to loathe getting in trouble for something not your fault more than for other kids (like we all hate it, but I think we oldest children hate it the most; I can see the loathing building in Sam’s mind every time we scold him for something the babies are doing too, and I have to remind him that he’s older and knows better), but GOD did I resent those kids. I don’t resent the dumbasses still going out and being Typhoid Marys around the world nowadays, but I do wish that someone would throw dirty diapers at their heads.

I think about them, and I think, “This stupid thing is just going to keep going, and it’s going to be 2021 before anything is over, and we’re going to just have this long, miserable time because people don’t know how to act. There goes everyone’s recess. There go people’s lives. Womp womp.”

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I let myself think that, and then I take a deep breath.

And I say, the first thing I’m doing when this is over is packing the kids up in the van and going to spend a day with my parents. 

I plan for going back to group with Isaac and Carrie and letting them play with all the plastic toys and watching them do more art and wreak more havoc, but this time, it’ll be slightly different havoc because Isaac will have his ABA therapist by then (let’s not get into that can of worms right now, I’m so tired). 

I imagine having a weekend day again where I go up to Michael’s and get whatever craft stuff I want for whatever dumb project I’ll never finish. Like maybe I’ll get photo albums or start scrapbooking or something, or at least think about it. And wandering through Barnes & Noble, enjoying the smell of ink on paper and coffee. And going to see a movie, taking all the kids to whatever crappy kids’ movie is out because we’re free to do so. 

And eventually going out to the mall, walking those long stretches of gleaming tile and popping my head into my favorite stores. Getting a free chocolate from Godiva. Setting the kids loose in the indoor playground after patiently wandering the Lego Store with Sam. Eating something that’s wretched for me from the food court and just not even caring. 

We’ll go to the beach this summer, plan it out a little more than our last trip. We’ll bring quilts and set up a full little camp on the sand, and take off a weekday to go (after all, Kyle has been working 7 days a week the past two weeks; who knows what it is about tech companies that drives them to think, “Ah, you’re working from home, that means all your hours are mine!”) so things will be less crowded and we can get a spot closer to the water.

(probably not Hampton Beach this time, though)

And we’ll have our road trip, in the fall or next fall, one or the other. We’ll pack the kids up in a rented van, we’ll see the roads, we’ll stop for gas and goodies. We’ll take 95 all the way down. We’ll stop at South of the Border, because I’ve always wanted to go but never have. We’ll see enormous fields of cotton and black eyed susans on the sides of the road. We’ll stay on the beach and then we’ll drive to Disney and we’ll be in that delightful bubble for a blissful week. 

This will happen, it will all happen eventually. This is what I think about to keep myself sane, because things are really hard and really scary right now, but it’s not forever, and in the end, we’re all in this together.

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Can I be blamed if I’m angry?
Can I be saved if I’m barely clinging to hope?
I’m clinging to hope

When I say oh, oh
Rain don’t change the sun
Jealous is the night when the morning comes
But it always comes
(Delta Rae, “Morning Comes”)

 

Beds and Screenings

/ lovescienceandnat20s / Leave a comment

When you’ve got three kids, you pretty much feel like most of your Big Adulting milestones are far behind you, especially if you’ve got three kids, a spouse, and a house. You’ve finished whatever schooling was expected of you, you’ve got married, you’ve signed papers for a mortgage, you’ve done your taxes, you’ve had a job or two or ten, you’ve had kids, you’ve ticked so many things off the list that it’s easy to forget other smaller milestones that come along the way.

Like buying appliances. We bought appliances for the first time when we bought our house, as the previous owners planned to take the fridge with them and the dishwasher had a color scheme and serial number that suggested it had been manufactured in the 1970s. In those halcyon days before Sears became a memory, we wandered through the Kenmore section and chose our appliances in black, not because we had an affinity for black appliances (honestly, stainless steel hasn’t gone anywhere for years, so that would have made more sense) but because the one remaining appliance–the stove–was black and we wanted things to match.

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(this is literally what our old dishwasher looked like)

That was nearly four years ago, and this week, Kyle and I checked another milestone off the list that we didn’t realize was a milestone: we bought a bed.

It’s not our first bed, obviously. We started our married life with an inflatable mattress that lasted three months and was perfectly fine for sleeping and marital activities until one night in August. We’d been sleeping soundly until very, very early in the morning when Kyle shook me awake and asked, “Do you ever have that sinking feeling?” And lo and behold, we were in the process of descending to the floor as our inflatable mattress ceased to be so inflated. We discovered, once morning came, that the mattress had somehow acquired insurmountable holes and was no longer suitable for use by anyone. 

SO we eventually shuffled off to Big Lots and bought the cheapest possible queen mattress and the cheapest possible frame and, like the very talented young marrieds we were, didn’t even bother with a box spring. And for the next eight years, that mattress worked very well for us! Or… mostly well. In the last year, the bed has begun to show the strain of belonging to two fat people (one of whom, we discovered this week, has gone down 6 pant sizes–not me, but one of whom!). 

(it’s Kyle, he’s down six pant sizes)

And admittedly, a lot of the recent strain on the bed, at least on my side, came from the twin pregnancy making me enormous, which put pressure on the springs and turned the bed from delightful and comfortable to misery. The springs had reached a point where they were poking my hip violently throughout the night, and poor Kyle has been dealing with lower back pain for ages, which made everything harder than usual. 

So a new bed. We’ve had a recent windfall of money, thanks to Kyle’s family, and while they were up visiting this week, we wanted to actually shop for a bed, not just go to Big Lots and buy the cheapest and easiest thing in the store. Fortunately for us, my cousin works at a Mattress Firm and was able to give us the Sleep System Experience (I don’t know if it’s actually called that, but it is now). 

And, you know, it really felt like an adult thing because the consideration was less ‘we need this, let’s just get whatever we can afford’ and more ‘what will last us and ensure that we have a good night’s sleep for years to come?’ That, really, was the adult part, where yes, affordability was a concern, but we could afford to consider quality as well. 

We tried out beds like a pair of lumbering Goldilockses, and in the end, we walked away with a pretty nice mattress and an adjustable frame (which I wasn’t sold on until my cousin put it in the “zero gravity” position for us and we both kind of groaned in relief like “ah yes, I remember being 18 and not having back problems”). Both were delivered on Saturday, along with lavender sheets (Kyle’s color choice, and I’m not complaining, purple is awesome) and a comforter that was listed on Amazon as being steel grey but is really one of the many shades of poop we’ve encountered over the last five years of being parents. And I’ve added to my “must buy” list a headboard (preferably one with a bookshelf) and a less poop colored comforter and maybe some throw pillows BECAUSE we got a king-sized bed. 

I never thought we’d need a king-sized bed, even though Kyle and I are both generously sized. We’ve slept in king-sized beds while traveling before, and though we’d start the night spread out and on different sides and laughing about how much space we had, we’d inevitably end the night wrapped around each other in the middle of the bed because I guess we like each other or something? And even with Kyle’s height (he’s 6’4”), a queen seemed to suit our needs perfectly. 

And then we had kids. 

More specifically, we had one kid grow old enough to leave his own room in the middle of the night and come into ours for, oh, any number of reasons. Lately, it’s because he’s just lonely, because my son is nothing if not a people person (he’s going to do so well in kindergarten… I hope), but it can be anything from nightmares to a stomach ache to he suddenly thought of a story to tell us. When he was smaller, I didn’t mind him in our bed because he could easily snuggle between the two of us, and we could all sleep comfortably. 

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Now, though, Sam is creeping ever closer to the four-foot mark, and having him in bed with us had become… well, difficult, we’ll say. It was the worst when I was pregnant with the twins, because of course, I was a small moose and Sam was clingy, but there was just no space in the bed for Kyle AND Sam AND me AND the planet that was my huge belly. We brought him back to his own bed most nights, but that wasn’t an ideal solution because he’d need a long discussion to get him back in the mood for sleeping in his own room, which meant that one or both of us would miss out on a lot of sleep. If we’d had the space, we’d have just let him sleep in the bed with us, but…

Well. I’m no longer pregnant with twins (a fact I’m grateful for every day), but Sam is even larger than he was before, and his midnight jaunts to our room haven’t slowed down in the least. For a while, with our bed being the disaster it was, we set up a little nest next to the bed, and he’d just hunker down there, content to be in the room with us, even if not in the bed; but that always gave me “wow, I’m a shitty mom” vibes–me in my comfortable bed and my son on the floor in my room, as if he didn’t have his own bed.

(his own bed, despite having a kind of cheap mattress, is very nice–it’s a sleigh bed, even, which has me envious as I click through pages of headboards on Wayfair)

The bed invasions won’t stop, and I don’t really want them to. I’d read an article a while ago about a woman who’d bedshared with her son and how people would always snidely remark about how “you don’t want him in your bed when he’s a teenager” and while she no longer bedshared with him once he’d reached his teen years, she made it clear to him that her room and her arms were always open to him, without judgement or condition. And he heard her and she was the one he came to when he had a broken heart or a difficult time at school or any number of myriad things teenagers deal with.

We didn’t really bedshare with Sam when he was a baby (both of us are paranoid about rolling over in our sleep), but at the same time, I want him to know that he’s always safe with us, whether it’s sleeping in our bed or sitting on the couch between us or buckled in the back seat of our car. I want that for the twins, too, when they’re old enough, whether it’s because of a bad dream or a bad thunderstorm. That they feel safe and comfortable with us is absolutely paramount for me. 

SO! King-sized bed it is. Maybe, eventually, if we ever transfer another embryo and get a dog and more cats and who knows what else, we’ll get another king and push them together like some sort of magical giant frankenbed, but for now, we’re enjoying the HELL out of this adjustable king-sized bed.

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On the other side of things is Isaac.

Isaac, my beautiful smiley little boy, my unexpected middle child who’s cuddled his way into my heart so deeply and irrevocably, my adventurous snugglebug whose smile could cure cancer. He’s been developmentally delayed–and officially labeled as such–since he was about four months old, most of that coming from (a) some torticollis and (b) that he was born six weeks early. We’ve had him in Early Intervention for that since about that time, and for a while, he was progressing by leaps and bounds, going from a potato who could only look over his right shoulder to a rocket baby zooming around the living room at the speed of sound. 

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But lately he’s kind of stalled. It’s not a big deal, honestly, because babies do that. They go through a developmental leap and they stall, they gain 15,000 skills over the course of one (long, sleepless) weekend and they pause. It’s more noticeable when you have twins because they never stall at the same time (and this stall happened while Carrie busily learned to stand on her own and take small, uncertain steps), but stalls still aren’t unexpected. At worst, I figured, we could just speak with the Early Intervention team and see about getting him some physical therapy or occupational therapy so that he’d keep up with his sister in terms of walking and talking.

He’s also a rocker and a bouncer, constantly moving himself in almost violent back and forth movements, sometimes mashing his face against something and other times mashing the back of his head against something. He can’t fall asleep unless he spends a decent amount of time on his hands and knees, rocking back and forth while dutifully sucking on his Wubbanub. And to be clear, babies rock and stim a lot, because the world is new and they need to experience it from all angles. Rocking is soothing for babies, too, and for the most part, it didn’t worry me. 

But something in my brain pinged that maybe I should worry, just a little. After all, we have Early Intervention anyway, and they’ve always told us that any evaluation the twins need, they’ll do for free. With that in mind, I asked the twins’ caseworker to bring an ASQ, or Autism Screening Questionnaire, with her when she came to our house next.

The ASQ is a series of what felt like six billion questions that you answer “always/often” or “sometimes” or “never” and your kid gets scored based on your answers. I don’t remember the scoring specifically, but I do remember that 65 was the cutoff for further testing. Carrie, who had her six month evaluation today, took the test first and got a 30, which is numerically the equivalent of “might possibly be the inverse of autistic, like citsitua” and that surprises exactly no one who’s ever spent time with her. She lives for sensory stimulation of all kinds and is about as neurotypical as a sixteen-month-old baby can be. 

Isaac, on the other hand, scored a 95, which is numerically the equivalent of “at least two autisms, possibly even three.” 

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Fortunately, our caseworker and our physical therapist (who was there for Carrie’s evaluation) also had a copy of the M-CHAT, which is the next step in autism screening. Its proper name is the “Modified Checklist for Autism in Toddlers” and it’s basically the exact same thing as the ASQ, only with fewer and more streamlined questions. With that one, a score below 8 suggests a mild or moderate concern, while 8 and higher suggests that further evaluation is warranted. 

Annnnnnd Isaac scored an 8.

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So we’re moving forward with his autism screening, with our EI office’s autism specialist coming in the next couple of weeks to have a playtime evaluation with him, just 10-15 minutes to see if he should be fast-tracked to an evaluation program, a process that can otherwise take months or even years (which I think is absolutely ridiculous BUT there’s probably an enormous backlog). And I have feelings.

I was pretty weirded out (in a good way) by the questionnaires hitting on questions I wouldn’t have even thought to associate with autism, like questions about constipation or increased muscle tone or “have you ever wondered if your baby was deaf” among the more typical ones like “does your baby have good eye contact” or “does your baby perform repetitive motions?” And I’m relieved for those questions because at the end of the day, you don’t have to be a completely nonverbal Rain Man type to be autistic. Isaac has great eye contact and likes people… but he also has no sense of stranger danger, doesn’t have any real words, and is often very stiff like he can’t stand to be positioned any way that’s different from his current position (which makes diaper changes a blast). 

The idea of one of my kids being autistic is also unsurprising to me; it runs in my family as much as brown eyes, enormous knockers, and astigmatism do. Though my younger sister is the only one in my immediate family with an official diagnosis, the rest of us easily fall into the category of “had current diagnostic criteria been used when I was six, I’d have a diagnosis and a half.” Kyle’s been telling me for ages that I should see a doctor to be officially diagnosed, and honestly, if things move in a more autistic direction with Isaac, I probably will. 

I mean, there’s a lot to it, and so much of treatment and diagnosis nowadays focuses less on what it’s like to actually be autistic and more on how autistic people interact with the world around them. In my experience, and from what I’ve read, a lot of it relates to the usual filters in your brain just… not working the way they do in neurotypical brains. A neurotypical person might easily be able to filter out things like the scratch of a shirt tag, the sound of the air conditioner, the flickering light in the corner, the smell of a long since cleaned spill, the taste of dry mouth, but it’s honest effort to filter those things out when your brain works autistically, and so you’re always on the verge of reaching a level of overstimulation that doesn’t much come for the neurotypical brain outside of the throbbing, psychedelic dance floor of a local club or Disney World on Christmas Eve.

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It’s exhausting. Some days, I reach the end of the day and just need to zone out completely, sit in a dark room and breathe. I have a hard time socializing outside a quiet or one-on-one setting because trying to figure out which voices matter and which ones don’t is really hard. Online or when it’s just with another person–especially someone I know well–I follow conversations very easily, but beyond that, I tend to spend my socializing time towards the edge of a room, counting down the seconds until I can leave.

But anyway. The point of all that is to say that if Isaac is autistic, I’m glad that he’s got me to advocate for him. This sounds really smug and haughty like “ha ha, my autistic child could not have a better parent than I, for I am the best of the parentals!” but it’s really more like “how fortunate to have been born to a mom who understands exactly how his brain works because it’s how her brain works.” It means I’ll be able to help him recognize when he’s getting overstimulated before it ends in a meltdown and help him find ways to cope with the loud, brilliant world that won’t lead to his complete ostracization. It’s like a vision impaired or hearing impaired parent having a child with a similar situation: they’re able to help better because they’re in the thick of it with their child. They know how to navigate a world that’s going to be harsh for their child because of the situation of their birth, in the same way that all parents teach their kids certain things about functioning in the wide world.

So overall, I’m pretty chill about it, but I do have two fears: therapy and Autism Moms ™.

They tie into each other, really. With therapy, I fear therapeutic approaches that, instead of teaching Isaac to cope with the world, will instead train him to appear neurotypical while ignoring what’s going on in his brain that causes the atypical behaviors. I’m not interested in tweaking his behavior; if he needs to stim, I want him to feel confident enough in himself that he can do so. I am, however, interested in teaching him coping mechanisms so that the world isn’t too much for him. 

Related to that… the Autism Moms ™.

Not every mom of an autistic kid falls into the category of Autism Moms ™. When I think Autism Moms ™ I think of the Jenny McCarthy type, the type wailing about autism stealing their child away from them, the one who will try bleach enemas and raw diets and anything to “”””cure”””” their child’s autism. 

I never have good encounters with these types (and they are incredibly common on parenting websites and forums). Things usually start off calmly enough but end with me trying to get it through their thick skulls that kids who have autism are STILL PEOPLE and THEY STILL HAVE EMOTIONS and maybe saying “I wouldn’t wish my autistic son on my worst enemy” IS A SHITTY THING TO SAY. 

Fortunately, the vast majority of autism moms I know are not this type; they’re fantastic advocates for their kids and respect that their children are PEOPLE, that autism is less tragedy and more “well, I just have to adjust my style and expectations like you do with every kid.” But I still fear the Autism Moms ™ because I know my feelings on autism aren’t super popular with them, and I think I’d probably get torn a new one for being really calm about my son potentially being autistic (like… ?? am I supposed to freak out and cry and sob? What is that going to change?). I want to have a village, but I do not want THAT village. 

So I focus on things like the Autism Self Advocacy Network and the #ActuallyAutistic tag on Twitter, and I’ll keep doing so as we all move forward with this. Fingers and toes crossed that we’ll be able to have Isaac evaluated soon and know one way or another, but either way…

Well, he’s my sweet little baby elephant, exactly as he is, no matter how he is.