Unmasked

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. 

November

This month has been here for roughly two weeks, and it’s already established itself as wild, even by 2020 standards, and as a month that nobody understands why it’s here already, as if the rest of 2020 hadn’t lasted for 70 years. But here we are, November 12, and I’m overwhelmed with all of the things I’ve accumulated in my mind this month.

(the arrows are the things I’ve accumulated in my mind this month, for reference)

We’ll start with the end of last month.

On October 26, I went in for laparoscopic surgery to see if I had endometriosis and, if I did, remove as much of it as possible. The surgery didn’t make me nervous in the least; when you’ve been through as many cycles of IVF as I have, things like anesthesia or the usual surgery worries kind of roll off you like water off a duck’s back. I was actually kind of looking forward to all of it, because it meant a day where I wouldn’t have to juggle the kids and everything about the house but could just rest and heal.

The surgery itself went about as well as I could hope, though my doctor didn’t find any endometriosis. He did find a non-zero number of adhesions in my abdomen—basically scar tissue glueing my organs together—from a previous surgery, probably my C-section, and he removed those. And honestly, that seems to have done the trick? My only pain right now is from sciatica, which is a BITCH, but the abdominal pain seems to have utterly vanished, and I’m LOVING it. It’s a good step on the road towards eventually yeeting my uterus and ovaries into the sun, because those bitches have been nothing but trouble for me. Couldn’t even manage their biological function without scientific intervention, stab and crush me on a monthly basis for the past 25 years… fuck them utterly.

Even though my adhesions likely came about as a result of my C-section, I’m still glad I had said surgery, and I still look back on it with a lot of fondness. It was a really good experience, genuinely—from it being 100% my choice to the way I was cared for before, during, and after the procedure, I wouldn’t change a thing. But that’s a rant for another day. 

So I’ve been recovering from that surgery for about two weeks now. I’m at about 85-90% functional most of the time, though I still get tired way more easily than I did before the surgery. I also have had to get creative with twin parenting, since I wasn’t supposed to pick up anything heavier than 10 lbs for the first two weeks after the surgery, and the twins are much more than 10 lbs. And they’re two, which means they’re getting into EVERYTHING and living life on the edge. Isaac’s latest game has been getting as close to the television as possible, despite the playpen fence we have around it, and my only tactic for dealing with that is to pathetically holler for Kyle until he’s able to come and rescue our son from trying to pick Donald Duck up from the TV screen.

Carrie, meanwhile, doesn’t need to be picked up because she merrily plops herself right in my lap at all times, sometimes to disastrous effect. The other day, I was sitting on the couch, minding my own business, and Carrie pranced up to me and proceeded to throw herself—elbow first—right on top of the incision at my belly button, popping it right open. Fortunately, it’s since closed back up (laparoscopic incisions heal pretty quickly, and I got on it with a bandaid right after), but oy. Recovering from literally anything with one toddler is difficult; recovering with twins is basically impossible, and it’s a miracle that I haven’t been eviscerated.

In the midst of all this, an election happened. 

Fortunately, Kyle and I had requested absentee ballots when our state offered them to everyone in light of the pandemic. We voted sometime in mid October, with me telling Sam how important it was to choose political leaders with good character (because we were studying good character in social studies and still are—citizens with good character are respectful, responsible, kind, and honest, per his curriculum). And then the surgery happened, and wouldn’t you know it, I was sound asleep at 11:30 a.m. on Saturday when the election was called for Joe Biden. 

Thank God. Like I am not religious, but thank God.

It’s hard to emphasize how difficult it’s been the last four years to raise kids to be proud Americans, to be citizens of character when the leadership in this country was so desperately lacking in it. I imagine it was similarly hard when Bill Clinton was off being a sleaze bag in the 90s (before anyone gets on me for “tribal thinking” or what the fuck ever). You want to tell your kids that character matters, that it’s important to be respectful and responsible and kind and honest, but then you look at the leadership in your country, and the people in the highest offices are the opposite of those things and, what’s more, so many, so VERY many people who voted them in have merrily embraced hatred and spite to the point where they’d rather see their fellow citizens die than listen to them. How can you teach your kid not to be a bully when the bullies seem to have all the power? How can you teach your kid the power and value of respect and responsibility and kindness and honesty when the world seems to reward the opposite?

Joe Biden wasn’t my first choice of candidate, but it’s refreshing to see someone who’s treating their colleagues and fellow citizens with respect, regardless of political belief, who’s responsibly planning his transition into the presidency despite all of the obstacles being thrown in his way, who goes above and beyond to treat individuals with kindness, and who, while not 100% honest, is at least not telling me that my eyes and ears are the ones lying. It feels good to be able to envision telling Sam about the president next year and not biting my tongue. 

But I don’t want to dive into it too much, mostly because I just don’t want to deal with the people bitching about this whole thing. They can all go hang out on Pander or Parlor or whatever-the-fuck, and I’ll be over here, sleeping a little bit easier these nights.

And there’s light at the end of the pandemic tunnel! I was already feeling better because of the election news, and then boom, the Pfizer vaccine is over 90% effective. I’ve been reading up on it, and this translates to only needing about 60% of the population vaccinated for herd immunity—how awesome is that? My biggest fear with any vaccine was the sheer number of people who wouldn’t take it—not from justified concerns but because it might give them 5G or something (ha! I wish! I could use a personal hotspot!)—negating its benefits. But here’s another area in which I’m breathing so much easier.

I’ve been thinking so much about what I want to do once things have cleared up, and I think one big thing will be taking the kids down for a three or four day weekend in Philadelphia. It’s educational, what with the Liberty Bell and all; it’s close to Sesame Place, with its autism friendly atmosphere; and I 100% need to find and hug Gritty, avatar of chaos that he is.

And then, I think, a road trip down to Texas again, with stops in Philly and Atlanta. Let the kids see their grandparents again, finally, see more of the country again—GOD, how I’ve missed being outside this little bubble. 

The twins are past due for their first trip to Boston, so that’s on the docket. We’ll take them with their stroller, probably down by Quincy Market and the Harbor, and we’ll ride trains to get there. Sam wasn’t old enough to appreciate being on a train the last time we took one into the city, but he definitely is now, and I can’t wait to take him. 

We’ll go to the mall again, eat in the food court, get truffles from Godiva, and browse the shops slowly and without worrying how crowded they are. The kids can go to the indoor playground and run around to their hearts’ content; they can go to the new outdoor playground down the street and do the same, no masks or worries. 

Kyle and I will have a long overdue anniversary date at the Melting Pot, and maybe another date at Chili’s, not because it’s exactly fine dining but because those are our places.

In September, the kids will all go back to school, Sammy to second grade and the twins to preschool. I’ll have precious quiet hours in the house to write more, to clean up more, to feel my own skin again. I’ll run errands without wondering if I’ve got enough masks or enough clean masks. We’ll go to the movies and eat popcorn and not care if the theater is packed. 

(…well. We’ll care a little)

We’ll see our extended family, my aunties and uncles and cousins that we’ve missed since last Christmas. I’ll see my cousins’ new little babies, and we’ll celebrate being together again with Feasts. 

(I feel like all of our third generation kids need “cousin crew” shirts for that inevitable meeting)

Sam wants to go to the beach, and of course we will, and build sandcastles and not mind that it’s crowded on a summer day. Maybe I’ll even wear a bathing suit this time. Like, it’s not LIKELY, but it’s possible. 

In other words, November has done to me what I never expected any month in 2020 to do: it’s made me back into an optimist, someone who’s looking forward to 2021, not just because it’s no longer 2020 but because it seems like it may bring something good after all. 

…but we’ll see. Until next time!

Teach me how to say good-bye

I don’t think it hit me at home until last night, at around 1:30. 

Kyle had already rolled over and fallen asleep, and I’d just finished reading an article about baby elephants (because the lack of motor control in their trunks is the cutest thing ever) and was rolling over to follow suit. And for some reason, that rolling over made everything hit me. 

For months before now, my cat Tinkerbell was too frail and old to climb up onto our bed, and even when we lifted her onto the bed, she wouldn’t stay long, and her departure always made us panic that she’d managed to break something, because to the last, she was not smart enough to realize that maybe she shouldn’t jump off of things that are so high. But last night, for some reason, my arms felt really empty without the possibility of her being there. The nights when she would be on the bed, I would cuddle with her until she got fed up with me, and all I wanted last night was just one more cuddle, just one more hug. 

It was pretty bad. I eventually got up (it was now encroaching on 2 a.m.) and got my old teddy bear from the bookcase where he’s been sitting for a while. He’s an ancient thing, a stuffed animal I got right around my first birthday, and he’s caught more tears and been through more hugs than almost anything I own. As toys in their 30s go, he’s not in the best shape, but he’s almost Real in the Velveteen Rabbit sense. Missing an eye, all his stuffing in the wrong places, a few awkward tears, burns on his back from one time when my mom tried to dry him in their fancy dryer and it was set too high for a nearly 40 year old bear.

But anyway, I haven’t held him while I was sleeping in a really long time; after all, I have a husband now. And last night, Kyle was there, snoring away, but I needed something smaller and more… I guess primal to hold onto. So I got my bear, Patchwork Bear. And I cried.

We don’t know what made Tinkerbell so sick lately. She’s been going downhill for upwards of a year, maybe 18 months, but we’d agreed at some point around the last time we spent $1500 because she was constipated that diagnostic tests were just too expensive for a cat that wasn’t likely to live much longer anyway. Any sort of treatments we’d give her would just stress her out and would ultimately be for us, so that we could put off saying good-bye and feeling like this. 

And throughout the last ~18 months or so, she’d been somewhat normal. Lost a lot of weight, became more and more reclusive, but still wandered out and screamed at us to feed her first thing in the morning and last thing at night, still puked to show her displeasure, still loved getting pet behind the ears and under the chin and on the neck. 

It was really just this week that she leaned into that decline. All of a sudden, she stopped eating completely. She stopped drinking more than kitty sips of water. She started to be incontinent. She was wandering places that she didn’t usually like to be–the front door, her old room, the dining room–and meowing for no reason. 

We called the vet, and the vet confirmed what I already knew: it was time. 

We’ve been talking about her death for a long time, because she was an OLD cat. Not record-breaking (she’d never have given us that satisfaction), but old enough that she’d stopped looking alive about two years ago. She’d had kitty incontinence for a while, which resulted in us closing off a whole room of our house solely for her use until she was in too much pain from arthritis and too tired to climb up and down the stairs (said room is, by the way, getting refloored as soon as I can get a decent estimate and get someone out here to do it). We talked a lot about the next cat we would get (“not until we’ve fixed the cat room!” Kyle continues to insist as I scroll through pictures of black cats and ginger cats and Maine Coons that look like Ron Perlman and Oriental shorthairs with ears too big for their heads), and it always came with the joke that she’d live forever just out of spite.

Spite fueled her a lot–after all, her first introduction to domestic life involved our dog excitedly deciding she was a new chew toy and putting her entire head inside of his mouth–but she was also very lovey once she decided you were Hers. She’d butt her head against your legs, roll around on the floor while giving you big cute eyes so you’d forgive her for puking her dinner up and asking for more. She communicated with a lot of squeaking and “brrt?” noises, and especially towards the end of her life, she’d give these purry, gurgly meows whenever we were petting her, as if to say, “Yes, that is delightful, do not stop.”

She was the runt of her litter, so she always ate her food way too fast, especially when there were other cats in the house; after all, if she DIDN’T eat the food fast enough, there might not be any left. And then, like the absolute genius she was, she would horf it all back up and beg for more. And just when I’d be SO. ANNOYED. with her for doing that, she’d delicately (or indelicately, when she was young and weighing in at 15 lbs) curl up right over my heart and fall asleep there, purring all the while as I inhaled her fur and had many coughing fits because of it. 

Kyle and I took Tinkerbell to the vet for the last time on Friday night. Despite Covid, the vet’s office let us be in the room with them and her to say good-bye; otherwise, we’d have had to wait outside. They had a little electric candle that they lit at the front desk to let other families know to please be quiet because we were saying good-bye to her. 

Very little of it was surprising or unexpected to me, because I’d spent the days leading up to her death reading about what would happen. I knew they’d put in a catheter, and I knew she’d fall asleep quickly. I knew it would be painless for her. I knew she’d let out a little sigh as the last air left her lungs. I knew her eyes would be open once she died, because closing your eyes requires muscle tension, and she had none once she was gone. 

The only two unexpected bits were exactly how sick she was and how above and beyond our vet and vet tech went to make her happy and comfortable. Because as it turned out, she’d lost so much weight that she was down to less than 2.5 lbs. It took them a long time to find a vein for the catheter, but they assured us that was normal for a cat of her age (adding, too, that she was the second oldest cat they’d seen there lately; the oldest being 21). And then, when it was time to let go, the vet tech suddenly asked, “Does she like cheese?” and I managed to say that she did, in between sobs (those enormous ones, coming from a pain so deep inside of you that it’s part of your very making). The tech gave her one ENORMOUS squirt of squeezy cheese, you know the fake stuff from the can, and she devoured that so fast that he managed to give her two more before the vet was ready to administer the final injections.

And then, it was over, so fast that it didn’t seem real. I cried and I cried, but I didn’t hold her body or cuddle her or stay for a long time afterwards because… well, that wasn’t her anymore. She’s gone, moved onto her next kitty life (from her idiocy, I assume that she was pretty early on in the nine lives cycle; maybe her third or fourth life, tops).

I know you can’t really look at death and say that anything happens afterwards with real certainty. Despite not knowing, I take a lot of comfort in the fact that no matter what, if anything, happens to any extra-physical part of me–a soul or spirit or the me of me–the atoms that make up my physical body will return to the cosmos that birthed them and become parts of stars and flowers and cockroaches and raindrops and soil and everything else in the universe at some point. And maybe, by chance, my atoms and the atoms of the people I love will meet up and make a spiderweb or a comet or a cloud together. And the atoms from Tinkerbell’s ashes (since we’re having her cremated, rather than deal with figuring out whether we can bury her in the backyard and risk attracting the foxes and bears and bobcats that have been running around our town lately) might be part of that, too, and that’s comforting enough on its own.

But I still like to think (even though I couldn’t prove it and wouldn’t expect anyone to agree with me) that maybe, on Friday evening, a mama cat was having a litter and maybe, she had one girl kitten who was born with a taste for squeezy cheese, and maybe in 6-8 weeks, when the floor in Tinkerbell’s old room is all fixed and we’re able to adopt another cat, I’ll see her picture on a website; and when I go to meet her, she’ll start purring like mad–too quiet to hear but easy enough to feel–because she found me again.

Breathe Again

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…

Hysteria

I have no idea how long this is going to end up being, but I wanted to get it down on “paper” just in case someone else is going through something similar and wants to know if anyone can relate (because yes, I can). 

About 18 months ago, I started having vague pain in my lower left abdomen, just a faint, bruise-like pain as I was trying to fall asleep. I could mostly ignore it except that last October, it got so bad that I couldn’t function, and I spent a morning in the ER over it, only for them to do a CT scan, observe that I hadn’t yet pooped that day, and diagnose me with a case of constipation that I should follow up with my gynecologist about (a.k.a., they had no fucking idea). 

And I did. I’ve mentioned here before that my gynecologist is awesome. He’s one of those doctors who believes you when you say that you’re suffering, and offers you whatever avenues could possibly exist to alleviate that difficulty. When I was pregnant with the twins and started getting the really bad itching that led to an ICP diagnosis with Sam (albeit, at the very tail end of the pregnancy when I was ready to deliver anyway, and my body just said, “listen, get the kid out of me or I am going to turn myself inside out”), he believed that it was a real problem, even if the lab results didn’t reflect that, and referred me to whomever he could in order to get me treatment that worked.

(in the end, it didn’t matter a lot because not long after the itching started, Isaac decided that he was done with being stuck under his sister and I delivered them)

So his initial steps were (a) to get me a consult with an endocrinologist because my ovaries showed signs of being polycystic; (b) to get me a birth control prescription to try and regulate my menstrual cycle some; and (c) to get me a breast cancer risk assessment as an added bonus. And, admittedly, with the birth control, I wasn’t having as severe pain. It was still there, but it didn’t have the highs and the lows it had without the birth control. The problem was that I got super SUPER depressed (remember that?) and didn’t know if the birth control was to blame, and anyway, I was having so much breakthrough bleeding that the whole thing just seemed silly. I thought he’d said that I should stop the birth control when I saw him back in May/June for the depression, and he thought that the endocrinologist said that I should stop the birth control, but ultimately, the birth control stopped.

SO.

Now we’re getting into July/August. Early August, I suddenly had agonizing pelvic/abdominal pain, like the kind of pain where you feel like you can’t see or think or breathe when it’s happening. It lasted for three days, also around the time that I got depressed enough to need the partial hospitalization program. Well, tl;dr – I got my period on day three. A nasty period. One of those ones that’s just… 

Yeah. 

The pain was bad enough that I could’ve probably gone to the ER for it, but here’s the thing: when you’ve been dismissed in an ER for pain you’re dealing with, you don’t trust them anymore. What were they going to do–give me another CT scan, tell me I was constipated again, tell me to go see my gynecologist? That would be $250 that we didn’t and still don’t have thrown towards an exercise in futility, so I just… skipped the middle man. I called my gynecologist again and said, in essence

I went to see him last week and had an extensive ultrasound, both transvaginal and abdominal. He found nothing on ultrasound but did notice that every time the probe or someone’s hand pressed on a specific spot on my left side, I would writhe in pain. Even if it wasn’t showing up on the ultrasound, something was clearly going on, and he decided that it would be a good idea to do laparoscopic surgery to investigate.

I haven’t had the surgery yet; it’s not for at least another three weeks, maybe more, since his calendar for the month is booked solid. BUT basically, it’s an exploratory surgery to see if I’ve got any endometriosis hanging out. 

Endometriosis is a condition where bits of your uterine lining (called the endometrium) somehow end up other places in your pelvis and abdomen. They don’t die there, though, and instead grow and shrink with your cycle like the rest of your endometrium. And it’s extraordinarily painful. If you’ve gone through childbirth, think about the pain of transition, and that’s about where I am right now. If you haven’t, imagine a giant bull has driven its horns into your lower abdomen and is using them to pin you to a wall. Every time you start to get used to having giant bull horns in your abdomen, he wiggles a little bit, just to make sure you know that yes, you have been stabbed by a bull. 

Or at least that’s what I’m feeling. The other fun thing about endometriosis is that you can’t really diagnose it without getting elbow deep in someone’s abdomen or giving them an MRI, and the surgery is kind of the more helpful step because if the doctor sees endometrial cells while poking around, they can just remove them right then and there and give some temporary remission of pain. 

(they can do this either with a knife or with fire, but a knife is the preferred method because fire can make your organs stick together, apparently, which sounds roughly as unpleasant as what I’m going through now)

So THAT is going on, and I’ve been having this specific bout of pain for five days now–my usual pain relievers haven’t been cutting it at all, so it’s this frustrating mess of misery, where I’m feeling mentally in a place where I want to get out and walk, I want to walk for 30 minutes, I want to hop in the shower and get clean, but I can barely stay upright for more than 2-3 hours at a time. I’m frustrated because this is depression behavior and would/will make it so easy to slide back to a bad place, but I’m just physically having such a hard time right now. 

And THEN, since I’m on day five of being stabbed in the abdomen by a large bull, I went to see my primary doctor today, and she pointed out that while she definitely agrees that it seems like endometriosis (we purposefully didn’t bring that up to see what she’d say, and she said it, so I felt validated), she also thinks I’ve got some sort of wonky thing going on with my hips/spine, because when she pressed on my spine to see how it was doing, it made me scream and writhe and also because I couldn’t lift my left leg very far without it shaking because it hurt so much. 

SO.

Now I have Xrays being processed, a prescription for horse tranquilizer levels of ibuprofen, a physical therapy consult, a laparoscopy to be scheduled, a partial hospitalization program, and a partridge in a pear tree.

AND I’m homeschooling Sam. 

Honestly, occupying a physical form is so dumb and pointless, and I would be much happier, I think, as a being of pure light and energy (that could still eat, because let’s be real, brownies almost make the horrifying ordeal of being mortal worth it). 

I’ll hopefully have updates on all of this hot mess soon. Right now, I’m feeling just barely well enough to sit up and spew words on a page because the huge ibuprofen hasn’t worn off yet, but it will fairly soon, and then it’ll be back to wondering if my uterus really is wandering my body while possessed by the devil. In the meantime, please enjoy Sam’s back-to-school pictures and the knowledge that, despite everything, he’s done really REALLY well with the first two days of homeschool. 

Caterpillar Deconstruction

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

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. 

Something I never thought I’d say…

Little known fact about me: I was homeschooled for a year.

If I’m remembering correctly, the reasoning went something like this. My grades had been slipping for two years at that point, due to what I now recognize as my first ever bout with depression (because no, eleven-year-old me, wishing that you’d get hit by a car is not normal). I remember a lot of talk about me not knowing how to study, which is fair enough I suppose, and a lot of blame being cast at the decision of the school district to put me in a fourth grade class that was, charitably speaking, a disaster. 

(the same fourth grade class in which a boy gave me an index card with pee on it, in which I was so bored by the material that I took to drawing on my desk for hours at a time, in which I was a permanent member of the “100+ club” because I’d learned two years before that 0x0=0)

(if I’m casting blame for my depression, it falls at the feet of puberty hormones, a pair of abysmal school years in a row, and plenty of bullying)

So I was homeschooled for eighth grade. My sister was homeschooled the same year, because the district was thoroughly messing up the accommodations for her learning disability (at one point, someone caught her closing herself in her locker during a break in classes because she didn’t want to do her assignment). My brother was homeschooled the same year because it wouldn’t be fair to leave him out. 

It was a weird year. I know that, at the start, I was… reluctant, to put it gently, and by “reluctant,” I mean that I remember having some screaming afternoons for no reason beyond that things were weird; but I eventually got the hang of learning at home, especially after we got into a routine that largely consisted of schoolwork ending by 12:30 every day and plenty of free time afterwards.

My parents used mostly religious curricula; I don’t think it was all A Beka, which was the In Thing at the time, but I feel like I used A Beka for math. My science book talked a lot about how evolution wasn’t a real thing and came with some supplementary materials on that subject, including a book I loved called “Dinosaurs by Design,” which had lots of informational pages on dinosaurs sandwiched between illustrations of, for example, Adam and Eve hanging out with a parasaurolophus. 

(I had to look up how to spell that, don’t judge me, when I was in my dinosaur phase, everything got its name from The Land Before Time)

The history text wasn’t terribly memorable. The English/language arts stuff was great, but then again, I’ve always been an E/LA person. I had to memorize a bunch of poems, and while I don’t remember how any of them went, I remember the act of memorization. For math, I did Algebra I, and I cheated so very much. Whenever my mom would leave me alone to take a test, I’d grab her answer key and input everything, which she must have known about, but it happened anyway. And then in June, as I was preparing to head back to public school (having apparently learned how to study), I had to take the Algebra I final at the high school and panicked because I’d been cheating all year and now my inability to math would be public knowledge and my parents would be furious and it was the end of the world…

…and then I got a 93?

Oh, and then every week or so, we hoofed it up to the nearest Christian school for my sister’s in-school therapy (I think? I don’t remember much because I spent the entire time reading Baby-Sitter’s Club books and longing after the smell of pizza in the other room), and most of what I remember about that was sitting in the front seat of our van singing off-key along with my Sound of Music CD.

Even 20 years later, I can’t decide if it was a good or a bad experience; honestly, I mostly settle on neutral. I don’t know if I actually learned to study or if my depression just ebbed somewhat. I was in honors and AP classes throughout high school, so something went right somewhere. And I remember, my first day back at high school, being beyond surprised when the friends I’d last seen in June two years prior not only remembered me but were incredibly happy to see me. 

(hahaha, thirteen-year-old me was such a miserable child, someone please go back in time and help her and also please de-frizz her hair)

*

Meanwhile, in the world of today, we’ve decided to homeschool Sam for the school year. 

I’m excited for it and simultaneously terrified and worried, because I don’t want to pull him out of school this year, but it honestly seems like the best option. Even in Massachusetts, where a lot of people have been doing really well social distancing and wearing masks, we’ve started seeing Covid-19 cases creep back up, which bodes incredibly ill for the school year. Had we kept up with the low numbers of the summer, I’d have been happy to send Sam back for at least a few weeks so that he could’ve had access to the school’s counselling services and learned to use the distance learning tools they’d set up for the students. 

But the numbers started to creep up.

And ultimately, Sam is… not the best at being self-guided. If we set him up on my computer or on a laptop and said “you need to do your schoolwork,” it wouldn’t take very long for him to end up on YouTube watching Markiplier play a game in which he’s a piece of bread (this is a thing, apparently). I don’t blame him for that, because he’s six. I barely know any adults who, when presented with doing work versus watching videos on YouTube, will easily choose the former. 

It’s the rock and the hard place I’ve been talking about. School isn’t safe. Distance learning won’t work for him. What are we supposed to do?

Well, it turns out that the answer is homeschooling. 

Just for a year, mind. I still think that Sam really needs that social aspect to his education, and that if Covid can get under control by next September (please please PLEASE), I want him to be back in a classroom for that reason alone. He needs kids his age. He needs socialization. He hasn’t had that in ages. 

But for now, homeschooling.

A friend of mine in the next town over posted a link to the curriculum we’re using; it’s called “Moving Beyond the Page,” and it’s largely literature-based and customizable. Sam’s a pretty smart kid overall, but he’s definitely far more advanced in math than he is in reading/writing, so we’re doing a first grade curriculum for reading and writing and a third grade (!) curriculum for math (because he can multiply and divide, and I listen to him do it and think how are you doing this, I couldn’t do that in my head until I was an adult). 

In my fantasy dream world, I’d want to grab one or two of his friends and their families and just do a small group working on the same curriculum, but that almost feels too risky and seems impossible. I wish there were a way to make sure he keeps in touch with his friends, but they’re all so young that the Messenger Kids app ends up being a “sometimes I remember to message my friends but mostly, I play games” thing. And I know that, if he’s anything like me, he’ll spend a lot of the first couple of months in screaming tears over our new normal. 

But. If he’s anything like me, he’ll adjust and come away better for it, having a good and fun (albeit very weird) year and blowing his future second grade teacher’s mind by asking them, “So when do we start square roots?” as everyone else is just getting into their times tables. 

School Shopping

The Fourth of July is behind us, we’re not quite to the point where people find it acceptable to go all out on Halloween (at least some people, I’m more of the mindset that spookiness should be a year-round thing), which means that it’s time to think about going back-to-school.

Our town has come up with some plans, though they haven’t shared the full details with all of us yet because their plans aren’t completely finalized, and they’re going to be getting them approved by the state first. What they did, since we are a small town of less than 10,000 people, was hold a series of town hall meetings with the principal of each school explaining the way things will likely look in the fall.

Because yes, by some beautiful miracle, schools aren’t starting until after Labor Day. I am so relieved. I hope that this remains the case for the rest of forever, even when there isn’t a deadly global pandemic.

But our town is small, and Covid cases here are few and far between–no clusters, just a person here, a family there, that sort of thing. Easily traced and manageable. And the Commonwealth wanted school districts to have three separate plans for back-to-school, so they came up with three separate plans, with the caveat that (a) the full in-person school just was not going to happen this year and anyone trying to insist on it can suck the big one; and (b) regardless of plans made, we’d probably be switching to remote learning again at some point during the school year.

The plan they want to implement, at least to start, is a hybrid remote-distance plan, with half the kids coming into school for two days, a half day of Zoom calls for everyone, and then the other half of the kids coming in for two days. On days they don’t come in, kids will have day long learning assignments, which I hope won’t translate to their time being monitored, because Sam finishes his stuff in less than an hour, and I genuinely cannot devote a lot of time to handholding; not because I don’t want to, but because other things are happening. 

I’m definitely leaning towards sending him in during the hybrid days, partly because I just don’t have the ability to give him the guidance he needs five days a week, and partly because I think it will be good for him, emotionally and mentally, to be around kids his age again, even if it’s only for a little while. 

I don’t like it. I don’t like any of it. I’m furious that we, as a country, shat the bed so profoundly with this pandemic (like, come on. Wear fucking masks. It’s not hard. You are all just whiny babies), because we shouldn’t have. We should have just been able to put on our big kid undies and socially distanced and worn masks for six weeks and then moved on. We should have had a government that cared about people instead of lining pockets.

But we don’t, and like I told Kyle earlier this week, should is irrelevant. You need to focus on what is.

And in that line of thought, I went school shopping for Sam today. 

It’s early to do it; last year, school supply lists weren’t available until around August 1, if not later, but because of the pandemic (I think), our district is trying to offer everyone a little more wiggle room, so they released the school shopping list last night, with another caveat that we needed to get double supplies–half to keep at home for distance days, and half to have at the school for in-person days. 

I honestly always have fun with school shopping; it makes me feel like a kid again. You know that really great feeling that only comes with smelling brand new, sharp and never-used crayons? The perfectly sharpened pencils, all in a row? The erasers, still pearly pink and perfect? I popped open Sam’s pencil case from last year today to see what of it we could salvage for school, and I got immediately overwhelmed with the scent of pencils, crayons, and erasers. For just a moment, it was like I was back in my first day of first grade.

This year, classrooms are going to look like they did when I was in school, too. I think we had some classrooms where teachers arranged the desks in something besides rows, but I also know we had more than a few teachers who were pretty old school and kept desks, even for first and second graders, in carefully distanced rows, not groups or circles or anything. 

But things will be different, too, because each classroom will only have less than 10 kids in it at a time. Things will be different because if your kid’s friends are in a different class from them this year, they won’t get to play with each other at recess–they’ll be outside, running around in little cordoned off yards, staying six feet away from each other. Things will be different because there won’t be a holiday concert or birthday parties or parties for holidays or anything that would be dangerous. 

And I wish that I didn’t feel like Sam needs that in-person interaction to really succeed at school and to be mentally healthy. 

They’ve told us that we can change our minds at any time, though, so I’m giving it something of a trial period. For the elementary school, they’re using the teachers the kids would normally have for distance learning instead of using an outside agency like they are for the upper level schools (which is just one of the six billion things the district is doing wrong, according to Random People On The Town’s Facebook Page). We’ll see.

And in the meantime, I buy supplies. I stocked up on two things of number 2 pencils, and six erasers. Fourteen sticks of glue, three pairs of blunt end scissors, two boxes of 24 crayons, two whiteboards with markers, lots of paper (colorful and plain white). Every time I go into the back-to-school aisles, I feel this enormous pang of sadness for the teachers having to deal with this mess. They deserve so much better pay and so much kinder treatment than they’ve received. I’m grateful beyond words that I live in a state where our elected officials are taking this pandemic seriously; I feel horrible for teachers in other states who are being forced to write living wills as they go back to school, a time that should be exciting and fun, so that they can help keep the cogs of the economy turning. 

I was feeling sulky today and saw that the coveted box of 96 crayons was on sale for less than $5, so I bought it, along with some drawers for all of my various craft supplies purchased in better times (I have about 3000 stickers and pens and washi tape and markers and so on). It helped for a minute, but just that minute of “wow, being six was awesome!” that quickly melted into “being six is less awesome right now.”

My therapist has gently been reminding me that this, too, shall pass, which is such trite advice, but it’s something I need. I need to know that this isn’t forever, because it’s not. People are going to continue to be dumb about it, but a vaccine will come soon enough, and if they don’t take it, that’s on them. Kyle will have a job soon (he has to), the twins will start school soon, things will go back to something resembling what we knew, though hopefully a little better for us having learned some harsh lessons along the way. 

(part of my plan for this year, back before it became 2020, was to get my first tattoo–something small and simple to see if my skin would scar horribly. If my skin didn’t scar horribly, I’d want to get something more complex later, and it would probably be a crocus)

And I ordered Sam ten more cloth masks so that he can cycle through them all as he needs them. He inexplicably wanted ones with pizza and tacos on them, and I say inexplicably because he does not eat either pizza or tacos.

We paid bills yesterday, not worrying at all whether or not we could afford it. I don’t know if I’ll be able to say that again for a long time. 

But I have 96 crayons, and Sam has school supplies. Kyle has job interviews, the twins have therapy, and this will not last forever.

Stuck

Like nearly every parent in the country right now (shh, homeschoolers, you can gloat about not having to change anything later), I’m facing a dilemma right now: do I send my kid to school in person this fall or do I try and do at-home learning for him?

It’s a rock and a hard place.

On the one hand, this pandemic is a serious thing, and I don’t believe that schools should be opening right now. Our state is doing pretty well by the numbers for now, but I look at sites like CovidActNow (www.covidactnow.org) and I see the states around us creeping back up to ugly numbers. I see people carelessly heading down to Disney World on a vacation–it can’t be that bad if Disney is open, right??–and wonder how much they’ll adhere to quarantine practices when they come back. I see things from the Federal government that make me wonder if they aren’t actively trying to make things worse, and also that something as simple as wearing masks to protect yourself and the people around you has inexplicably become as much of a political statement as open carrying in Walmart. 

(who are you going to fight in Walmart, anyway, the deep discounts?)

I read our state teachers’ union’s ideas for reopening, and they sound theoretically okay–phased, slow, paying attention to the numbers–but none of them want to risk their lives like this, and we shouldn’t be asking them to. Some people say that oh, it doesn’t spread among kids, so it’ll be fine! Other people still think that the whole thing is a hoax to get us all implanted with 5G chips so that Bill Gates can take over the world or something (I wish they’d implant me with a 5G hotspot; I’d take my family and my Netflix and go ride this nonsense out somewhere very far away from other human beings). 

And then there’s that… look, have you met kids? Schools are absolute petri dishes, and unless you’re going to be putting them in little bubbles for the whole day, they’re going to be getting themselves sick and getting each other sick. I remember Sam’s first year of daycare, he had a cold and ear infection every three weeks. Literally, every three weeks. And it put my job in danger because he couldn’t be at daycare with a fever and ear infection every three weeks, so I had to take off to take care of Sam, but that wouldn’t matter now because I don’t work anyway, BUT ANYWAY, the point is that any given virus will go around a school like wildfire.

Like another example. I remember when I was six, the chicken pox went through my school. This was before the vaccine, back in the days of ill-advised chicken pox parties (my parents did not have one of those; I just happened to sit near a kid who was patient zero for that particular outbreak). Even without the chicken pox parties, though, you couldn’t avoid it. If the kid next to you had the chicken pox, you were going to get the chicken pox. And that was doubly true for the everyday viruses that marched through the school like a faceless army on a mission. In the winter, we’d all rotate being out of school for days to weeks with whatever yuck was going around. Stomach bugs, colds, flus, all of it.

So the idea that Covid-19 won’t spread through schools like wildfire is kind of silly to me. The idea that it’s a risk worth taking is also kind of silly to me. I don’t want to get this disease. I don’t want my two-year-olds to get this disease. I don’t want my parents to get this disease. I don’t want my kids’ teachers to get this disease. 

The obvious answer to all of this is to keep Sam home from school until there’s a vaccine (please please please let one of the three or all three work, I don’t care which one, just please give us a chance to focus on fixing our inherent issues instead of watching the world burn down around us). It’s theoretically possible. We finished out last year entirely online, with twice weekly Zoom calls, new boxes of crayons as consolation prizes, and gosh I miss the first half of last school year.

Even if I didn’t follow the school’s inevitable plan, homeschooling is easier now than ever. A lot of my friends currently homeschool (dear international friends: the school systems here in the state were wonky long before the current disaster timeline, that’s why), and they’ve got kids Sam’s age, and they’ve all been sharing helpful link upon helpful link. So it’s a thought.

But.

Here’s the hard place.

The hard place is mostly a picture of my average day. The morning, from 8:30 until 11, is all about the twins. On any given day, I’m coordinating ABA (they still come into our house because they’re considered essential, thank goodness), plus 1-2 other therapies for each twin, all of them at random times in the day that have nothing to do with any logic that I’ve found beyond “this is what time I’m free.” Afternoons are free of coordinating, but that’s when I dive into trying to get Stuff done (as in, house management stuff: bills, trips to Target, making sure we’ve got the things we need, doctors’ appointments, etc.). And all of that before 5 p.m. so we can get the kids to bed at a normal time. 

Earlier, when this was all starting, Kyle took charge of a lot of Sam’s school stuff–he didn’t stare at Sam and force him to do stuff, but he was able to coordinate Sam while being a little light on stuff at work. He was also able to help set Sam up on Zoom for those calls, and when he lost his job about two months into this nonsense, he was even more able to help–he was a lot more hands-on, helped Sam with art and science projects, etc. 

BUT. Kyle will absolutely be in a new job by September (please please please or else we’ll have more to worry about than just Sam’s schoolwork), and while I didn’t worry about the impression it made when he was stepping away from waiting for his computer to load a build when he was at a company he’d been at for six years, I do worry about it at a new company. Whoever he works for will likely be “understanding,” but it’s still not a good look to get a brand new job and then spend most of every morning away from your work. 

All of this creates the hard place. Who’s going to teach Sam? He’s not old enough that I feel comfortable leaving him to his own devices–I know that if he’s left alone with the internet, he’ll be through with schoolwork and diving into Let’s Play on YouTube, which he’s not supposed to do, but he does when left to his own devices. This isn’t kindergarten, either. He’s actually going to have subjects to study this year, beyond just learning to read and write and very basic stuff. He’s going to have things that he needs to be taught, not just things we can throw at him and say “here, color this.” 

That’s not even getting into the social side of things, the other intangibles that come with in-person learning. Sam hasn’t seen other kids his age since May. He hasn’t spent time with people outside of the family in about as long, and I know that’s affecting him. He’s more anxious, more nervous. He wakes up at night at least 2-3 times a week, sometimes with nightmares and other times just wanting to be with us. He doesn’t want to go and play by himself at all, so his playtime has mostly devolved into video games, which I hate because I’m like–dude, stop playing video games. You have six sprillion Legos, you have such cool toys all over the house, play with those so I can stop feeling like I’ve been flushing money down the toilet the last six years. Every day, he checks his Facebook kids messages, but that’s a sporadic form of connection at this age. 

There’s no good answer. I still don’t know what we’re doing. And I’m angry that it’s come to this: that the alleged “greatest country in the world” couldn’t get our act together four fucking months ago so that, come the start of the school year, we could send our kids back safely. Because it’s not safe right now, but the costs to not sending our kids back are pretty high, too, and as a parent, I’m feeling entirely lost.