mental health

Once Upon a Time in New York City

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Most of the time, I’d at least want to put some effort into slightly masking my ADHD in a blog entry, but since I’m drained and in pain, I am putting in the absolute bare minimum of effort in general BUT I wanted to get this all down because I’m still chewing on a lot of feelings, and unlike the cucumber topped with boursin I had this weekend, they are not dreamy and delicious. So you get words, but you’re also going to see a lot of parentheses where I go off on a small tangent, and I’m not sorry because you knew what you were getting into.

So.

This weekend, we did a family vacation to New York City.

I love New York City. Even after this exhausting weekend, I still love it. I love it with lessons learned and with confusion gained, but I do love it. There’s something about the energy there that… I don’t know. It feels like it breathes. I don’t just mean the six sprillion people there at all times (because if it were just the people, I’d say the same about Disney, which has its own distinct energy, or other crowded places, but I hate crowds, so that can’t be it). It’s just something about the city that is simultaneously so populated that there are entire countries that can’t compare and that is just a tourist destination, that’s both full of photo ops and must sees AND full of people just going about their daily business. The sidewalk sparkles, which is probably just a combination of mica in the concrete and garbage, but it just. I don’t know. There’s an energy there that I love, even when I’m not feeling it myself.

I won’t say that I used to go all the time, because that’s simply not true, but I used to go with some sort of frequency. My teens through my early twenties were sprinkled with trips varying in length from roughly a school day to a week, and I always loved those trips. I remember the first time I went was with my high school government class, and I remember nothing about anticipating this trip or planning for it or anything but actually being there, and then the experience divides itself into a handful of tiny memories, like snapshots from a photo booth:

  • Driving downtown on our tour bus and being very close to Central Park on one side and buildings on the other, and the locals were just crossing the street in a manner that suggested they were about to walk straight into the bus, and we country hicks were universally baffled by this behavior because did they not see the bus right in front of them? Spoiler alert: tour buses are almost as common as pigeons in Manhattan, so it’s less that they didn’t see the bus and more that they didn’t care.
  • Battery Park and then what can only–by process of elimination–have been the boat ride to see the Statue of Liberty, even though I don’t remember anything about seeing the statue or anything about Ellis Island, the other part of that tour option. I just remember “I am in Battery Park” and “I am on a boat.” 
  • Visiting the United Nations building, which I assume was the purpose of the trip. And this gets broken down into two smaller memories:
    • Seeing a gift from China to the United Nations in the form of an enormous carved diorama made of pure jade, which was extremely rare and expensive. I don’t remember what the diorama was, just that it was jade and carved and from China.
    • Being in the gift shop and telling my government teacher that I was buying an Israeli flag because I’m Jewish. Note that, at the time, I was not (to my knowledge) Jewish at all; it was just very fashionable in Evangelical circles at that time to say things like “I’m an adopted Jew!” which… there’s a lot wrong with that statement, to be honest. And I told these bizarre details to my government teacher and, to his credit, he did not call me out on this, just sort of nodded like “sure, makes sense.” But the joke was apparently on sixteen-year-old me, since as it turns out, a branch of my Polish ancestors were actually Ashkenazi, so whoops? 

And that’s it, that’s the full experience from that first trip. I remember exactly nothing else. I almost feel like I could’ve dreamed it, but no, in old pictures of my bedroom, there’s that Israeli flag, sticking out like a sore thumb among my doll collection and other international artifacts. So it must have been real, but it certainly felt like a fever dream.

The next year, I returned to the city, this time as a Christmas gift from my parents and Auntie Beth, who lived in New York at the time. Auntie Beth did an AMAZING job showing me around the city; we did everything from getting sweet potato fries at a diner (I had never known such a thing existed until that trip) to hitting up the MoMA and the Met to seeing Phantom of the Opera four rows from the stage (as any theater kid from the 90s knows, this is an absolute peak experience) to taking in a flower show to meeting up with more aunts and uncles and cousins for a big fancy expensive meal to taking in the view from the top of the Empire State Building. Unlike with the previous trip, the memories from this week are overwhelming and numerous. Because Auntie Beth was a local, she seamlessly navigated us through the city in a way that seemed as effortless as breathing to seventeen-year-old me. 

The only truly negative experience of that trip was the Amtrak ride to and from the city. I don’t know what Amtrak’s deal was, but the ride that was supposed to be maybe four hours, tops, wound up taking closer to six on the way there and closer to ten on the way back. The way back was particularly awful, as none of the cars had air conditioning on what was the hottest day of the year so far, and then, when the stuffy air already had us all gagging and swaying in our seats, the dining car ran out of every food that wasn’t hot coffee or light beer. 

There was the time that I went with my college choir and stayed in this really odd place that was part theater, part dinner theater, and part… dormitory for 9/11 relief workers, I guess? We all slept in this bizarre room that seemed to have bunk beds going on forever and ever, and there was a proper fancy stage in the building and a little meeting room that overlooked whatever street was outside. I remember that the place was just off Times Square, literally steps from all of that mayhem, but you never would have guessed. I don’t remember if we performed (though we must have), but I do remember going all over the city like the dorky tourists we all were, and that everyone was scandalized by the appearance of the Naked Cowboy as we scooted along through the Times Square area to where we were staying. 

Another time, my brother got us tickets to see Wicked on Broadway, so we found a hotel with two beds (a surprisingly tall order in Manhattan) and took a Mega Bus into the city. We spent about two days just wandering around, seeing whatever sites tickled our fancies, taking random pictures all over the place. When we called home on our last day to tell our parents we were heading out, they shocked us both by announcing that they’d acquired a kitten in the roughly eighteen hours we’d been gone. In the crowded streets, I thought I heard them say that her name was “Twitty,” and I was fully prepared to scold them heavily for choosing a terrible name for a cat, but no, her name was Tweety, which was much better.

Then Kyle and I hit the city for a day on one of our many drives back and forth to Texas. We mostly hung out around Central Park and took it easy, not really looking to do too much while we were there. We did, however, make the terrible and severely touristy decision to eat our dinner at T.G.I.Friday’s, which, like, it’s New York City. It’s one of the foodie capitals of the world. And we ate at Friday’s, and their food is microwaved and they charged double for it because we were idiots who ate at T.G.I.Friday’s near Times Square. Brilliant move, really.

The last time I went was with my mom, who was trying to get a visa to join my dad on his six week work trip to China. Chinese visas are, apparently, complex beasts, and the process required heading to the Chinese consulate in New York City. She never actually did get that visa, but we had a good time in the city anyway. We stayed in some fancy pants art deco hotel near Macy’s, and because my mom understood that New York City is a lot of walking, we took cabs everywhere. And we didn’t do too much touristy stuff–Central Park, shopping at Macy’s, peeping various sites near Times Square–but it was still a fun little trip. 

So I like New York City. A lot. And I thought, in a genius manner, that it would make for a great family vacation, and honestly? It kind of did, but I also learned a lot of things while we were there. Namely: 

  1. New York City at almost 20, New York City at almost 30, and New York City at almost 40 are very different animals. In my 20s, I could probably have wandered around the city from dawn until dusk and suffered no ill effects, and I have to remind myself that I’m not in my 20s anymore, even though I haven’t been in my 20s for roughly 10 years at this point. When I planned out this trip, I noticed that everything everyone wanted to do, save for Carrie’s preferred adventure of going to see the Statue of Liberty (or as everyone renamed her on the trip when we saw how much the ferry was rocking, the Statue of Liability), was around Times Square by a few blocks. Easy peasy! I can do that!

    Except, well. No I can’t, apparently. Twenty years ago, I was practically skipping around the city. I could have gone all night! Even ten years ago, I took the cabs with my mom, but I think I could’ve done okay without. But I’m not twenty or ten years ago, I’m now, and the me of now moves a lot more slowly and gets tired a lot more quickly.

    For example, on our Statue of Liberty day, I planned for us to do three things, which seemed reasonable: we’d go see said statue, then have lunch at a really cool market/counter service hybrid place I knew about, then close out our day in the city by seeing the New York Public Library’s map room. Three things seems reasonable, and for twenty-year-old me, it probably would have been reasonable, but almost forty year old me struggled with just getting to the statue. This was partly because we got a little lost looking for parking, partly because we had to navigate everywhere with my rollator (named “Wheelie” by the kids), and partly because the Statue of Liberty is kind of a most of the day thing. You have to do airport style security to get there and then wait in this long line for the boat and then try not to hurl as the boat pitches through the water and then maybe you go up into the statue or maybe you don’t but either way, the wait for the boat was hot and the boat itself was kind of stuffy and more than anything else, you want one of those fresh squeezed lemonades you keep seeing people drinking, and then when you do look at the statue, you have a bunch of emotions about so many things and you’re not really sure why, and then of course we have to go to the gift shop to get kitschy souvenirs and by the time you’re ready to leave, it’s almost two, and you’ve still got to eat lunch and find an accessible subway station and get back to Bryant Park before the library closes at 4:30.

    What I’m saying is that we got to lunchtime and Kyle and I looked at each other and then gently negotiated with Sam to see the map room later because even if he was okay (and he wasn’t, he was whining about his feet hurting), we were exhausted.
  2. The rate of change in New York City is terrifying, but also I’m just old and haven’t been there in a long time. Remember above where I talked about all the times I went to New York City between being sixteen and being twenty-eight? It wasn’t a lot, not like an annual thing, but enough that I felt familiar with certain parts of the city (like Times Square, Central Park, Rockefeller Center) and could wayfind pretty easily when near those places.

    This is no longer true.

    I don’t know what happened. Everything about Times Square looked completely backwards to me on this trip, and I couldn’t figure out which end was which or where I needed to go or why. I’d think I was looking at one end of Times Square and then nope, I was looking at the other. We spent a LOT of time in that area this weekend, mostly because we parked at the New Jersey Port Authority Bus Terminal, and I just had no idea where I was the entire time. Rockefeller Center was the same way; I felt like I was in some sort of alternate dimension New York City where everything was the same except a little to the left or sideways.

    Which made the whole trip really hard. I was our navigator at first, sort of (I say “sort of” because it’s hard to hold a phone and navigating while also holding onto a rollator), but before being even halfway through day one, I had to give up. I had no idea where I was going. I understood the streets as much as I ever did, but beyond that, it was a weirdly off version of a place I’d been before. I didn’t like it. It felt like shoes that were two sizes too large or driving somebody else’s car.
  3. This city is not very accessible. I’d never considered this before, honestly, because when I used to go to New York, I had two fully functioning legs and zero fibromyalgia. Now I have one leg that works all the time, one leg that’s like 60% there and 40% dead nerves, and fibromyalgia that flares like a bitch when I’m stressed, even if the stress is good (like, say, the stress of a vacation). I thought I’d prepped enough for this by bringing my rollator, taking plenty of Aleve, and pacing myself. And don’t get me wrong, that all helped, but…

    Well. Like I said, NYC is not terribly accessible. It’s got one of the most comprehensive subway systems in the world, but with all of those stops, very few are actually accessible if you have a wheelchair or other mobility device. We were lucky because I can stand and walk shorter distances without Wheelie, so if we popped up at a station without an elevator or accessible entrance, we just lifted Wheelie through and pressed on. I can’t imagine if I’d been in a wheelchair.

    To the city’s credit, many of the sidewalks are fantastic to walk, but plenty aren’t. I kept getting stuck and having to heft Wheelie over curbs or cracks or whatever, and then I’d imagine if I were in a wheelchair or scooter and then I’d feel kind of sick to my stomach. As I said above, I’m lucky because when worse comes to worse, I can walk, but even so, the accessibility left a lot to be desired.
  4. I am a lot more disabled than I thought I was. I’ve had this conversation a lot with my physical therapist, where it’s turning out that my body is–for myriad reasons–nowhere near where it used to be or should be in terms of functionality. When I started PT a couple of months ago, my therapist (who is wonderful and encouraging and has helped me make really great strides in terms of overall strength) noted that my left leg is significantly weaker than my right leg overall. Likely this is because of the nerve damage I’m 99% certain is there (because it’s not like I’ve been doing leg day on one leg while the other dangles), but whatever the case, I’m at about one and a half legs at the moment.

    Which I didn’t think was a huge deal because, for the most part, I’m living my life in a normal way. Sure, I need my rollator to get around, but that helps a TON. Last month, we did a family trip to Salem, and I managed just fine there. I can go to the mall without issue, I can go to Target without issue, I can do my PT without too much issue (though it wears me out, but anyone who’s been through PT understands that particular tiredness). In my day to day life, I’m fine… well, maybe not fine, but I’m not suffering and I don’t come across things beyond my capabilities very often.

    New York City is beyond my capabilities.

    I don’t mean that my legs fell off as soon as we entered the city limits or that I flopped around the streets like a fish (can you imagine that, flopping around NYC city streets? Blech). New York is a very walk-y city, as I’ve been mentioning, and some combination of the heat and sun plus my only one and a half legs plus my fibro acting up when I’m stressed (even good stress like vacation stress) had me exhausted so quickly every day, drenched with sweat, gulping for air, and begging to go back to the hotel (or well. Internally begging, which warred with me also internally saying, “NO, we are STAYING HERE until we DO ALL THE THINGS.”).

    On our last day, when we shuffled from city parking to the New York Public Library beside Bryant Park, my legs immediately began screaming in protest, like a pair of toddlers denied their binkies. Before, I had been trying to pace my walking stops a little more evenly: every 2-3 blocks, in the shade, for no more than a minute or two. That day, I couldn’t. I had to stop so often, and I hated myself for it. This was less because I saw myself as an inconvenience (I’m in therapy to delete thoughts like that; unless someone in my family actually expresses that they find me inconvenient, I know that’s just my brain lying to me) and more because I SHOULD BE ABLE TO WALK A LITTLE BIT LONGER BEFORE MY LEGS NEED TO QUIT.

    Having your physical capabilities diminish is fucking hard on a lot of levels. I’m having a lot of chats with my therapist about it, but it’s a process. It’s grief and frustration and so many things. 

ALL of that said, I don’t want to give the overall impression that (a) it was a bad trip or that (b) I’m now going to become a hermit and stay in my little hovel forever and ever amen. We had a genuinely good time overall. I definitely teared up at the Statue of Liberty (something about seeing a symbol of the best my country can be hit me in the gut… either that or I was seasick) and had an incredible lemonade sitting in the park on Liberty Island.

I had the most delicious pasta of all time–mafaldine with a mushroom ragu–at Eataly near the World Trade Center.

We enjoyed an honestly adorable meal at the American Girl Cafe near Rockefeller Center, where I discovered the joy of cucumbers topped with boursin and also got to watch my kiddos interact with the dolls they borrowed to be their lunchtime buddies. 

I breathed in the energy of the city, more than a little marijuana smoke, that heartbeat I remembered so well. I got to enjoy the inside of the library, imagining that I would one day be Very Rich and build my own library to match with just as many Expensive And Important Books, maps, and artifacts. 

And then after, when I was evaluating my experience, I took a moment to be REALLY ANGRY that my body is now creaky and exhausted instead of young and spry and then I started thinking about and researching trips we could take as a family that took my disabilities into account. There are so many of them! More than I was expecting! In particular, I got excited about all the National Parks that are accessible because I’ve been dying to take my kids to see everything gorgeous this land has to offer, from Yellowstone volcanology to that giant hole in the ground that is the Grand Canyon to the enormous sequoias and everything in between. Apparently, being permanently disabled (which I can’t call myself because fibro is such a weird condition and we don’t have a proper idea of wtf is the issue with my leg yet) gets you free admission to National Parks as well; so while I’d much rather be able to walk and run and do New York City without every day ending at 2:00 p.m. because I’m exhausted and crying in pain, there are a few silver linings. 

(another silver lining that Kyle doesn’t enjoy is that cruises are often very disability friendly, and you can rent a scooter to have with you onboard a lot of the larger lines so that you can enjoy that vacation as much as an able bodied person. His argument is that cruises are still large boats on water)

Anyway. Another trip in the bag. Even when it’s painful and exhausting, I love going on these trips because I know my kids are making incredible memories. Sammy, despite complaining for weeks beforehand that he didn’t want to go, told me the last night of the trip that he didn’t want to leave, and really, I think that speaks for itself in terms of how well things went. 

Labeled

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Labels are a weird thing.

When you feel comfortable with yourself, you often don’t see the need for labels. Why label something? Why label anything? But the more you step outside the realm of what’s viewed as “typical,” the more you want to know what you are. If I’m not “normal,” what am I? Or maybe “typical” and “normal” are the wrong words, so let’s use the word “default” instead. Kind of like when you open a video game for the first time, you’re presented with the “default” option for character creation; that’s how life can feel. There’s the “default” option, and then there’s the rest of us, trying to figure out how we fit in, and that’s where labels become important.

A while back, I wrote about two of my labels: “bisexual” and “demisexual.” Both of those deviate from the “default” setting: heterosexual. The first thing most of us are exposed to in life, and the sexuality that describes most people, is heterosexual. That doesn’t mean that there’s anything wrong with not being heterosexual, but it does mean that if that word doesn’t describe you, you want a word that does describe you. And so, there are labels.

Labels that we talk about a lot in our family have to do with neurodivergence. Both of my sons are autistic; my oldest also has ADHD, we suspect my younger son will probably have that diagnosis when he’s a bit older as well (he certainly has the impulsivity for hyperactive type); my husband recently got a diagnosis of combination type ADHD, and I’ve been sitting here for years, calling myself autistic because it’s the label that best fit my experience with the world.

It still does, by the way, but things have gotten much more complicated.

Self identifying as autistic is a controversial thing, and people can get pretty cranky about it. The assumption is that some people claim an autism diagnosis–especially online–for various types of clout or as a kind of “get out of jail free” card. I’d say that neither of those things happen nearly as often as the cranky folks like to claim, though being an old on today’s internet, I can’t know for sure. It’s been my experience, though, that at a bare minimum, those who self-diagnose as being autistic don’t do so on a whim or for funsies, but because they’ve done as much research as they can reasonably do and have found that the diagnosis resonates with them… and because getting professionally diagnosed can be pretty difficult, especially as an adult and especially as a woman.

My own path to self diagnosis–and eventually, an unexpected diagnosis, but we’ll get there in a minute–started when my younger sister was diagnosed with Asperger’s Syndrome in the late 90s. She was 10 before anyone suggested that she might be autistic and 12 when she got a diagnosis (for comparison, Isaac was diagnosed at 19 months, and Sammy was diagnosed at 7). 

As my family learned more and more about autism (which, note here: Asperger’s Syndrome has been reclassified as simply being part of the general autism spectrum disorder list, at least partly because the diagnosis was created by a literal Nazi who wanted a classification for autistic people who were functional enough to avoid the gas chambers. The more you know~), we started talking about “autistic tendencies,” which isn’t a thing, but it was what we had to describe ourselves at the time. A lot of this involved talking about the more overt signs of autism that would tip off a neuropsychiatrist or two: stimming, rigidity when it came to schedules and behaviors, social awkwardness, sensory sensitivities, picky eating, echolalia, communication struggles, etc. None of it was ever severe enough to warrant assessments for my brother or I–we were mostly good students, albeit socially awkward with terrible time management and a penchant for not doing homework, but nothing about us raised flags red enough that our schools suggested diagnoses for us. As far as anyone told us, we were “normal.” Quirky, but within the “default” range.

The trouble is that no, I was not “normal” or “default,” and I knew it. Which is something I want parents to internalize because I’ve read and heard before of parents not wanting their kids to be diagnosed with something because they don’t want them to have that label or go through life thinking that they’re different. Your kid knows they’re different. They know that their peers do certain things more easily than they can. They know where they struggle. They know that they aren’t the “default” setting, and disallowing that label absolutely does more harm than good.

Because, you see, when nobody tells you that your brain works differently, so of course your experience with the world is going to be different, you assume that the problem is that you’re just not good at being a person. Which is where I was for most of my life. It was like other people had been given a manual on how to do certain things: how to read between the lines of conversations, how to not bump into walls or trip over thick clumps of air, how to recognize when it was their turn to speak or not go completely silent in an echoing cafeteria or restaurant. They knew by default the order that things should go in, they knew how to pay attention in class without doodling and how to do their homework all the time. They knew how to make and keep friends. 

And then: me. Socializing has always been an uphill battle for me. I don’t know when to say something or what to say or how to say it, particularly when talking to people face-to-face, unless it’s a conversation with a set sort of script (for example: “Doctor, I’ve been having worse and worse migraines for the past several months, and I wondered what we could do about that?” “Yes, I’d like to return this blanket because I accidentally ordered it in the wrong size.” “What time should I drop off my kids for this activity?” “What would you like us to bring to the Christmas party?”). I struggle to read between the lines of conversation, so those unspoken messages that are such a huge part of communication (some researchers say it’s at least 55%) go right over my head. I can write well, but most other academic pursuits are a struggle, and I can never get my homework done. I bump into walls, I trip over thick clumps of air, I sprain my ankle walking off a one foot stage platform. The louder the environment, the quieter I am. I fiddle with my hair, pick at my skin, bite my nails to nubs, pull out my eyebrows. I walk on my tip toes all the time, especially when I have bare feet. I hate wearing jackets, and I only started trying new foods once I hit adulthood and wanted to impress Kyle when we started dating (and by “impress” I mean that I didn’t want him to find out yet that I was a weirdo who subsisted on butter noodles and chips and salsa).

(which he did eventually find out, but only after I made myself look cool and default by eating ribs and drinking Dr. Pepper)

The explanations for these things ranged from physiological (“you walk on your tip toes because you have a short gastrocnemius tendon in the back of your leg and need physical therapy”) to complimentary (“you’re an absolute genius writer and breezed through the style class, which nobody has been able to do in years”) to insulting (“well that was stupid, why would you even think to put the papers in that order?”) to cruel (“you are lazy and terminally unprofessional, and unless you learn to shape up, you will never succeed in your career”), but they all seemed to boil down not to a difference in brain function but rather to a deficit in my behavior or personality, something that I could change, but I simply wasn’t for reasons that nobody could pinpoint.

And that’s a blow and a half to your self-esteem. It’s one thing to know that you struggle in areas where others seem to excel quite easily, but to have those struggles blamed on your own personality deficits is pretty brutal. And worse, I didn’t know how to repair these supposed personality deficits, because nothing I did–nothing anyone else did–seemed to work. Punishments, scolding, yelling, training, therapy, encouragement… it all seemed to go in one ear and out the other.

Which is why, when I started thinking that maybe, just maybe, I didn’t have autistic tendencies but actually had autism proper, it was like a weight slowly being lifted off my shoulders. It seemed that maybe I wasn’t bad at being a person, that maybe I hadn’t missed out on receiving the “how to human” manual. Maybe my brain just works in a different way from other people’s. Maybe I’m not “default” and bad at it; maybe I’m autistic and perfectly fine at being that.

It took a while of digestion to start accepting it, and I don’t think I really embraced the idea of being autistic until around when the twins were born, perhaps a little while afterwards. At that point, I’d left yet another job being scolded for things I didn’t realize I was doing wrong or things I was doing wrong but had no idea how to properly fix. I ended up with three straight years of being a stay-at-home mom without much of a break, save for my kids’ therapies, and that was enough time for me to start really looking at myself and accepting that hey, this is who I am. This explains so much about me. This is a label that I want to have.

The trouble is, of course, that self-diagnosis doesn’t get you very far. You can talk about being autistic, but at the end of the day, it’s your interpretation of things, and I wanted it to be solid fact, set in stone, I’m autistic and if anyone has a problem with that, they can eat my shorts. When I took my oldest to his assessment, the pediatric neuropsych politely looked at me and asked if I’d ever been assessed or considered it. I said that I hadn’t and she said, “hm,” and wrote things down, and it got the wheels turning. 

I talked to my therapist, my prescribing RN, and my primary. The former two were enthusiastic about giving me references, while my primary, who is “meh” at the best of times, remarked, “I haven’t seen anything in your behavior that would suggest autism to me, but I’ll see what I can do about that referral.” Which, okay, I’ve learned over the last 35+ years of living on this planet that if I appear too weird, I may as well exile myself from society at large and go live in a cave; and what’s more, doctors only see me when I’m coming in with the prepared “doctor” script: “hello, I am dealing with [problem] and would like [solution].” It’s rare that they see me unmasked and unscripted, so. Okay. 

(the doctor who has seen me unmasked and unscripted is my OB-GYN because he has performed two surgeries on me, one of which I followed by telling him–while high on fentanyl and ketamine–that I loved him)

The referral process was, to put it mildly, exhausting. I started it roughly two years ago, and it’s been a lot of back and forth with insurance companies, doctor’s offices, neuropsychiatry departments, more insurance companies, more doctor’s offices… about a month ago, someone from the neuropsychiatry office called to say that they didn’t accept my insurance any longer (which sounded fishy because it’s one of the largest insurance providers in the country) and that they’d put me in a file and I could call back if I ever changed insurances. I hung up, started to have a breakdown, and then she called back saying that she’d misread the file, and about a week later, I had my appointment scheduled for the day before Valentine’s Day.

And it almost didn’t happen. This past Friday and Saturday, I got hit with congestion and sinus pressure so bad that I thought I was going to lose my mind. I took a Covid test that I thought looked faintly positive (blame all my years trying to conceive for that one) and started to internally panic because rescheduling this assessment would be another enormous ordeal. Thankfully, though, subsequent tests came back blatantly negative, so I went ahead on Monday, even though I’d only gotten three hours of sleep and had a crushing headache.

I was apprehensive from early on, as I was told there would be a written portion to the assessment, and I had no idea what that would entail. The neuropsychiatrist mostly made me feel better, since she had a welcoming personality and was very straightforward about everything. She asked me questions about my history, my family’s history, my health, and then asked what I was looking for in the assessment. I explained that while I was fairly certain I was autistic, I wanted confirmation that no, I’m not just bad at being a person, that maybe there’s something else going on. She understood but also explained that even if she thought I was autistic, she likely couldn’t give me that specific diagnosis. As it turns out, insurance companies aren’t terribly keen on covering autism assessments once a person has turned eighteen (because, as we all know, the autism flees the body at midnight on the eighteenth birthday), so in order to get a proper assessment as an adult, you have to find a neuropsychiatrist that doesn’t take insurance and pay for it out of pocket, often to the tune of thousands of dollars. 

This is, of course, absolute horse shit. Which is the neuropsychiatrist’s assessment as well.

“What I can do,” she said, “is give you an idea of anything else that’s going on in your brain that might contribute to the things with which you struggle. We’ll do an I.Q. test, and then I’ll have some questionnaires for you, and while I won’t have the full report ready for another two to three weeks, I’ll try and at least give you my impressions before you leave today.”

Fair enough, I thought, and we began.

The I.Q. test was by far the longest portion of the assessment, and while I have my own thoughts on I.Q. tests as a whole (they have a racial and class bias and don’t really test inherent intelligence so much as opportunity), it was an interesting experience. We started with the verbal portion–memorizing lists of ~15+ words, naming as many animals or words that started with S as I could, defining words, explaining relationships between pairs of words. I knew I did well there; the neuropsychiatrist kept humming and saying, “oh wow, I don’t think I can spell that one,” which are generally good signs. 

Then we moved on to less verbal things, and I started to flop. She listed off a series of numbers for me to repeat back, and I think I did alright. Then she listed off a series of letters and numbers (like “192AQM7KD0217B”) and had me tell her how many numbers were in the sequence she’d given me. I had to read a page of the words “red blue green” in various orders; then I had to look at a page where each line was one of those colors and list the color given; and then I had to look at a third page that also had the words “red blue green” but each word was a different color from the word and I had to name the color and not the word. I had to look at patterns of increasing complexity and find the missing piece to each pattern. I had to look at shapes and choose the three puzzle pieces necessary to build the shape. I had to do complicated connect the dots puzzles and draw abstract shapes from memory. I had to look at a computer screen and press the spacebar whenever I saw a letter except the letter X.

(I didn’t do well at all on that one)

Once all of the I.Q. testing was done, I did the written portion, which was ultimately just self reporting on depression, anxiety, ADHD, and autism symptoms. And then the neuropsychiatrist tallied all of my scores and gave me her impressions.

The first impression she had was that she was comfortable diagnosing me with inattentive type ADHD. This basically means that while I don’t have the impulse control issues or hyperactivity associated with ADHD, I can’t focus on things to save my life–which honestly tracks with literally everything. I was explaining last night, for example, that while Kyle is an excellent DM for our D&D campaign, I cannot stay focused on just the game to save my life. I can’t focus on TV shows without having something to play with in my hands. I can’t do work without having something open in a second screen (which drives my managers bananas). My mind wanders frequently and far, and it always has, and the trappings of ADHD as a whole–struggles with time management, executive function, and rejection sensitive dysphoria–are things I’ve been familiar with for a very long time. 

It’s not surprising that I was never diagnosed with ADHD as a kid, as I grew up in the 90s, and ADHD wasn’t something they looked for in girls back then, especially if it lacked the hyperactivity and impulsivity component. I have zero impulsivity and like to sleep (and always have), but distractibility is my personal demon and has been since I was a kid. Still, I got decent enough grades that I managed to slip under that particular radar and stay in the honors and AP class setting throughout high school, so nobody really thought much of the doodles in the margins of my notebooks or the fact that I couldn’t finish homework to save my life. The real struggles were ones that people either chalked up to me being lazy/not math brained (read: failing out of trigonometry) or me just being shy and socially awkward. And neither of those are things associated with ADHD or really treatable with medication, so it didn’t ping the radars of any teachers, parents, or doctors.

(which I want to make abundantly clear: because my ADHD and NVLD, which I’ll talk about below, present differently from what people expect, I don’t blame anyone for not seeing them for what they were; I just accepted them as being personality deficits for the longest time because nobody knew better back then, but knowing better now is part of my own journey towards healing and living a better life)

I have the option to treat my ADHD with stimulants, but I’m holding off for numerous reasons, not least because right now, the gold standard medications for ADHD are very hard to find for reasons nobody can quite explain. I think I do eventually want to try and medicate, just to see what magical things I can accomplish when I can actually focus for more than thirteen and a half seconds a time, but I don’t want to start only to immediately start dealing with withdrawal. I’ve done that with my antidepressant, and it’s ugly. Instead, I’m mostly using this to inform my life. No, I can’t pay attention. A fae creature at one point said, “Can I have your attention?” and I stupidly gave it away and now it’s gone forever. Give me accommodations so that I can make your life better.

Outside of inattentive ADHD, the neuropsychiatrist said she felt comfortable diagnosing me with something that’s somewhat controversial because it’s not yet in the DSM (The Diagnostic and Statistical Manual of Mental Disorders, basically the guidebook for neuropsychiatry and psychology) but that she felt fit me rather well. It’s called Nonverbal Learning Disorder, and it basically does the opposite of what it says on the tin: people with NVLD are excellent at verbal expression and comprehension but really struggle with almost everything else about learning and existing, especially things in a visual/spatial context and things in a social context. People with NVLD tend to be very well written and well spoken but they also tend to be clumsy and not understand a lot of social cues or rules (like rules that might define professionalism in the workplace, for example). So for example, someone with NVLD might be able to write you the most beautiful letter you’ve ever read but then will get completely turned around trying to get to your house because they couldn’t read a map. They have extensive vocabularies but get tied up when it comes to puzzles and math. They express themselves beautifully but don’t read between the lines of a conversation.

NVLD is a disorder that’s come up a lot more frequently since Asperger’s Syndrome was removed as a potential diagnosis for people who have similar symptoms. It’s often an alternative to an autism diagnosis when neuropsychiatrists look at autism from a framework of always meaning a struggle with communication and excellence in visual and spatial (and often mathematical) fields. And at the same time, it’s often comorbid with ADHD, autism, and a whole host of other learning disorders. 

And I guess I’m of two minds about it. On the one hand, I do feel like the NVLD covers a LOT of my issues when it comes to schoolwork and work work. It’s something I wish I could have on a piece of paper and take back to my high school trigonometry teacher and shove it in his face, like, “SEE???” It makes my learning methods make sense, where I’m not necessarily bad at things that aren’t language, but where language is concerned, I utterly soar while with everything else, I stroll along at a normal pace. 

But I also don’t think either the ADHD diagnosis or the NVLD diagnosis cover everything. I still don’t have a lot in the way of talking about my sensory difficulties, how I can’t talk in loud restaurants or how wearing socks makes paying attention five thousand times harder. While I’m not as rigid as either of my sons (because heaven forbid our daily schedule look even slightly different for either of them), I do get tense when things change unexpectedly, more tense than you’d expect someone without specific neurodivergences to get. I think that I am autistic, and while the NVLD may be a more specific flavor of that autism, it’s autism just the same.

The thing was, too, that the neuropsychiatrist explicitly said that she wasn’t qualified to diagnose me with autism anyway, that she didn’t have the necessary training to recognize that, particularly in an adult. So whether or not I am autistic remains something of a mystery that I don’t really have an answer for, and that is, in no small part, because of the way health insurance functions in this country.

But I have some answers. Some labels. I can request specific accommodations that will help me in specific ways. I know that I’m not simply bad at being a person, just my brain is operating on a different system, and while that may be a disability (and it is, in a lot of ways), it also gives me something of better insight into who I am, why things in my life have happened the way they have, and what to expect going forward.

And that’s not the worst outcome by a long shot.

Inability

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Fibromyalgia.

That’s what I texted Kyle and my mom and my best friends after I got out of the rheumatologist. Just one word because it was the diagnosis I received, and it didn’t need a whole lot more explanation in that moment. I was in pain; I have been in pain for years. And there was the answer to my wondering why: fibromyalgia. 

The frustrating thing about getting a diagnosis of fibromyalgia is that most of the medical community looks at it with a loud shrug when it comes to what it is, what causes it, how to fix it. On the one hand, certain therapies help: gentle movement, gentle activity, tai chi, yoga, and certain medications that I was on already like gabapentin and venlafaxine all tend to lessen symptoms or, at the very least, trick your brain into saying “well this isn’t so bad.”

(the irony of the movement is that if you do too much of that, you end up exhausting yourself, so it has to be balanced: walk, do yoga, swim, but be gentle with yourself, or you’re going to reach the end of your routine and be a noodle)

But on the other hand, it’s a disorder that’s not understood very well, and unlike a lot of autoimmune disorders, it’s not one where your usual regimen of NSAIDs or even opioids will do much good, because the problem isn’t inflammation so much as it’s your brain getting confused about the signals it’s receiving from every nerve in your body. It’s sort of like this:

What research there is shows that fibromyalgia tends to develop after a physical or mental trauma, which tracks because I’ve had this pain since shortly after my Awful Back Incident in 2020. It exhausts you on so many levels because you’re constantly fighting pain that doesn’t even make sense; it’s not like inflammatory pain or pain from an injury. It’s just pain, every nerve in your body responding to every conceivable stimulus it receives by sending pain signals. 

And nerves are one of those fun areas of the body that most doctors just shrug loudly about and say “idk, it’s magic I guess?” (obviously not literally, but you know what I mean) It’s roughly a step up from “you have ghosts in your blood and you should do cocaine about it” like we had in ye olden days of medicine, but not a huge step. And there are experimental and off-label treatments all over the place–LDN is one that I’ve heard a lot of good about and plenty of people happily extol the virtues of marijuana, particularly higher CBD strains–but it’s not a super sexy and easily understood disorder so it’s not something that people are champing at the bit to fix, at least not right now, at least not in huge numbers.

So. Fibromyalgia.

I’ve had a couple of good cries about it. Maybe that’s emotionally fucky of me, but I don’t really care. I know it’s not the end of the world, and I know that functionally, very little about my life has changed–I’m not even on any higher doses of medication or anything–but I think knowing that not only is my diagnosis one that’s lifelong (because as of right now, there is no cure for fibromyalgia) but also it’s one that doesn’t have any therapies that work quickly. And that shouldn’t be frustrating, but it is. Before I went to the rheumatologist, I was doing my own research (I can see you, doctors, tsk tsking me over there) and playing “what if it’s this” with a bunch of autoimmune disorders. So many people talked about going to the rheumatologist, having said doctor take one look at them and say “you have [x]” and prescribe them some shot or drug that made them feel better within 24 hours. Obviously not a cure, but a reduction in symptoms. 

But fibromyalgia isn’t like that. My rheumatologist told me the main things she’d suggest prescribing were medications I was already taking. That exercise and movement would help me but both would take time to really work their way into my brain. That fibromyalgia is very real–that the symptoms aren’t psychosomatic or anything–but that it’s heavily misunderstood.

I don’t know. I feel like that’s something fair to cry about. Sorry, you’ve got an incurable disorder and the best we can suggest is that if you exercise you will eventually start to feel better, and maybe some drugs on the market could be useful but we’re your physicians and we’re very skittish about prescribing things for off label usage, so have fun. 

It’s required adjustments in thought, for better or for worse. I’ve already been looking at my life differently because, hey, autism; but then you add this disorder to the list and it’s a whole new level of different ability, as the Autism Mommy T-shirts say. Right now, that looks like taking things a lot more slowly than I have been. I’d been looking at life kind of in a mindset of “I’m just going to get back into things, I’m going to push myself a little bit more each day” and yeah, that’s technically what you should do with fibromyalgia, but if you’re also dealing with mental stress while pushing yourself physically, it produces interesting results. 

Specifically, this past weekend. Halloween, what have you. I feel like once upon a time, my Halloween adventures with the kids wouldn’t have caused problems for me: I stopped by a few stores Saturday morning and then took the kids to the town trunk or treat in the evening, which was a lot of standing in line, waiting, etc. Then on Sunday, we took the kids to Barnes & Noble and Target. Again, normal things, but both days just wore me out completely. Maybe it’s the stress of this month (we’re going on vacation in a little while, so I’m still piecing that together), but my brain and body are like… not fans of doing stuff. 

I talked it over with Kyle, and we decided that it’s a good idea for me to have a disability placard for our cars. It’s a weird thing because fibromyalgia is a decidedly invisible disability, but I’m discovering more and more that any level of overdoing it, including walking too far between the car and the store or between the car and the hotel and so on and so forth. And on one hand, I feel like I need to justify it over and over again, but on the other hand, like… no? ??? It’s justifiable from my doctor’s standpoint and from the standpoint of the state, so there’s really not anything else I need to do. 

Besides take it easy.

And get to a dispensary sometime. 

And figure out an exercise routine.

But all of that when vacation is over. For now, I’m more focused on getting cars inspected, oil changed, tires checked; getting road snacks and creating packing lists; pulling together a driving playlist and figuring out where we’re going to have Thanksgiving dinner.

And doing it all while being like, ah, I can’t do as much as I used to. 

So that’s neat.

Style

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When I was in high school and college, I paid a lot of attention to how I looked. I loved dressing up in certain ways, wearing real outfits that weren’t just jeans and a t-shirt. In college, I fought off depression by spending absurd amounts of money on makeup (admittedly, not expensive makeup, but if you’re buying a bunch at CVS every week, it adds up), and while I never put much effort into my hair outside of the salon chair (blonde for one year, red for the rest, never quite achieving the chunky highlights I wanted and thankfully avoiding a Kelly Clarkson look), I still took care to make sure I looked decent, at least when I wasn’t heading for an 8 a.m. class.

I lost that at some point.

I don’t know when I lost it. Maybe the summer between junior and senior years, when depression hit me like a lahar, knocking me down and burying me up to my eyebrows in mud so thick I couldn’t get out of bed most days. Maybe after I graduated, when I was so panicked about finding some sort of work that the idea of really pulling together a Look seemed insurmountable. Either way, by the time I’d left school and entered the “real world,” the effort required to pull together a cute outfit and do my makeup seemed pointless. I wasn’t quite schlubby–that came later–but I didn’t care. 

It wasn’t really from lack of desire to care; it was more from–I don’t really know. Something sapped my ability to do so. Maybe it was the corporate grind of those early years, the drag from temp job to temp job or retail work to retail work (because an English composition degree doesn’t lend itself to very many career paths) and the slow spiral of untreated depression. I wanted to curate a closet of cute looks, but lack of money and that fucking drag prevented that from really being the case.

And now I’m on the other side, a nearly forty year old parent whose fashion sense can best be described as “pajamas that are (probably) clean.”

I don’t much like that. Don’t get me wrong, I am a proponent of comfort over style, function over form, but I look at myself in the mirror and don’t like who I see looking back at me because it’s not just that she doesn’t care about her outfits or makeup (lol what makeup). It’s that she doesn’t care about herself.

I honestly don’t know when that happened, but I feel like it was a slow decline. Bit by spoony bit, saying, “well, that doesn’t matter,” until the person looking back at me was unrecognizable by most of my standards, and I’m left doing some weird sort of mental calculus every time I want to go out, the math of “how schlubby can I get away with looking.”

And it’s part chronic pain making it hard for me to dredge up the energy necessary to really put work into my appearance, and it’s part being tired all the time, and it’s part “wow, three kids is a high number, and oh, they all have IEPs and you’re constantly emailing back and forth about whatever they’re doing at school? Wow, that’s an even higher number than three somehow.” 

BUT NONE OF THAT IS THE POINT OF THIS ENTRY and also it’s really depressing to think about, so we’re moving away from it.

The point is that I now have the time, some of the energy, and the resources to actually try and make myself less schlubby. I’ve got my Caboodle full of makeup that I can use when I really want to (and/or when I find time to dig up a makeup tutorial somewhere that’s easy to follow and caters to my hooded but not super hooded eyelids), I’ve got large swathes of the day free to play with makeup and fashion, and I’ve got the desire to look less like a sentient pile of (mostly clean) laundry. My only struggle at the moment is figuring out what I want this new fashionable me to look like. 

See, when I was younger, while I was really good at having outfits and wearing makeup, I didn’t really have a Look, per se. It was more just “ooh, this is cute!” regardless of whether it pushed towards surfer chic or vaguely skater-esque or grunge or preppy or goth. My closet had personality, or more accurately, personalities, and I could never settle on just one look. Now as a woman pushing forty, I want to really narrow that down and decide what I want to look like. 

My first instinct is to go wholly goth. I love the goth aesthetic, less from a super edgy look at me perspective and more from a “why yes, I would like to be a vampirewitch all the time, thank you” perspective. 

And I’ve been leaning that way with most of the clothes I’ve bought in the last year. I’ve started to move towards a collection of t-shirts and dresses that are all black, all the time, or at least mostly black or gray. It’s kind of lazy goth, really, because the hardcore goths REALLY go for it in a way that’s a bit more than I’m comfortable doing (largely because it seems like quite a lot of work for a trip to Target). Doing this has made shopping both more difficult and easier–I can narrow down my choices more quickly, but I also really have to dig for certain things (shopping for a dress to wear to my cousin’s wedding at the beginning of the summer was an adventure, and I’m still not wholly pleased with what I got). 

The trouble, though, ends up being that I can’t commit to goth shoes any longer. This fact saddens me greatly, as goth shoes are just. Perfection. Everything about them is perfect. I’ve lived for finding good goth shoes most of my life to this point, starting with a pair of knee high platform boots my mom got me for Christmas when I was 17 (boots that, along with my favorite red dress, frequently got me into trouble during my college years) and continuing right on through to the knee high combat boots and black motorcycle boots I have nestled in my closet right now. I love them. 

But I cannot walk in them any longer. 

Between the wtf of my chronic pain in my fingers and toes and small bones of my feet and the “oh that makes sense” pain of my sciatica, I’m basically relegated to Very Supportive Sneakers. And that’s fine, and I love my Very Supportive Sneakers, but it is a bit jarring to pair a wonderfully curated goth ensemble with a pair of gray and pink New Balances. It’s like a fashion mullet: spooky on top, Dad mowing the lawn on Saturday on bottom. 

Hrmph.

So it’s a work in process. But I’m figuring it out, and I’ll keep y’all updated as I do.

Some Me Time

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All three kids are in school full time now.

Somewhere, some judgmental person is like “how can you be so happy about your babies being out of the house all day???” but listen. I have spent the last eight years with someone either on me or in my uterus nonstop. Today, I got to go on a lunch date with my husband without finding someone to babysit for us. When I had to send emails this afternoon (because being a mom of three school-aged children means doing a lot of emailing), I didn’t have to worry that someone was going to get bored with whatever I’d thrown at them to distract them. I could just email and reply, email and reply. I was so fast.

So now I’m figuring out what to do with these hours between 8:00 a.m. and 3:00 p.m. when I used to have to spend 110% of my time making sure Isaac wasn’t bungee jumping from the top of the stairs (that still is a focus between 4:30 p.m. and 7:30 p.m., for the record), and a lot of it boils down to actually taking care of myself.

Anyone who’s raised twins can tell you that it’s a LOT of work. You essentially have to be in two places at once at all times, even more as they get older and more capable of causing problems on purpose (as they gleefully inform me they’re doing several times a day). Your own needs don’t just take a backseat; they get strapped to the rear bumper with some duct tape and you pray they won’t fall off when you hit a particularly gnarly pothole. And when it’s twins, it’s not a societal thing telling you that mom should give up taking care of herself while dad does whatever. If you’ve got a decent marriage, both parents are struggling and dragging themselves across the finish line at the end of every day, wondering how they survived.

Actually me at the end of any given day.

And then add autism into the mix, with its superpowers and drawbacks, and basically, I’m amazed that I made it to the twins’ first full day of school without actually being committed to a mental institution. 

(note that I did come close, but it was technically a partial hospitalization and it was under extenuating circumstances, i.e., a literal plague, so I still consider it a victory)

This week, self care mostly just looks like having very relaxing days. I was in sleep therapy for a while this spring and summer, and I’m pretty sure my sleep therapist would shit a blue kitten to see how I’m spending this first week with no kids at home. But that would be her problem because I’m sleeping not because I feel like I need to but because I can and I want to. I like sleeping, and I like sleeping even more when I know that I don’t have to worry about my kids while I’m sleeping.

After this week, though, it’s time to really buckle down on the actual self care. Not the forever naps or the eating bonbons or wearing sheet masks type of self care, but actually pulling my body back from whatever hellhole it’s been in for the past two years.

I’d written back in March, when I had time to write here semi-regularly, that I was working on getting a CPAP, and I have gotten one. And I’ve noticed a marked difference in my before and after life, though I didn’t realize the difference until one day, when I didn’t get enough sleep and suddenly, I felt cranky. That didn’t happen before because I was just in this permanent state of exhaustion that never ended, so I didn’t ever feel cranky. I just felt normal. 

But then the other day, I didn’t get as much sleep as I had been and had to function on this insignificant amount of time. And I was cranky. I was so upset about everything and I was like ??? what is going on? Until I realized that oh, I was acting like I hadn’t slept because I hadn’t, and boy was that weird. I was so used to getting such bad sleep for so long (roughly 70%-80% of my nights were spent not breathing) that I didn’t know what being sleep deprived felt like anymore because it was just my normal. 

So I’ve taken care of the sleep aspect, at least, but a lot of me is still tired. This is partly because I’m still recovering from however many years it’s been that I’ve had sleep apnea and been getting zero sleep. This is also partly because, increasingly, I’ve been dealing with absurd amounts of bizarre pain.

I say “bizarre” because it’s pain that I can’t really explain with anything simple. I can explain my knees and hips and ankles hurting because I am fat. That makes sense to me. I cannot explain why my toe knuckles and finger knuckles hurt pretty much all the time. As far as I know, I haven’t been running around all night like a gorilla, balancing on my fingers, or learning to dance en pointe. My fingers and toes have hurt for the last two years off and on and it’s just very, very weird.

When I spoke to my primary care doctor about it (not intending to, by the way; I went in to speak with her about a completely different matter, and Kyle said, “hey, while you’re there, why don’t you talk to her about your fingers and toes hurting?”), she basically diagnosed me with “being fat” and spent the rest of the appointment meticulously reading through the list of ingredients on the Dr. Pepper I confessed to drinking. Which… yeah, pretty par for the course when you go to the doctor as a fat person. And, mind, I’m not saying that I’m either healthy or not fat; quite the opposite, really, and I know the steps I need to take to improve my situation. 

But.

Anyway, my doctor thankfully also ordered bloodwork to check for autoimmune issues, because when you have the symptoms I have (nonsensical joint pain, skin that gets hot when it’s in the same universe as a day over 65 degrees, fatigue even when you’re getting decent sleep), it tends to indicate something autoimmune going on. One of the results came back elevated in a range that, from what I’m reading, tends to be consistent with autoimmune situations, so that’s exciting.

I do not want to have an autoimmune condition, I should add. They all sound wretched. Bare minimum, they sound like a lifetime of pain and medication to do away with the pain that has awful side effects of its own. But I’d also like to know what the fuck is up with my body already hurting. Like my body already hurts; I don’t need an autoimmune diagnosis to make that a thing. 

(as to why I never brought it up before, quite simply it’s because between the pandemic and raising three kids with varied special needs, my own needs were, as I said before, strapped to the back bumper with duct tape)

I have an appointment with a rheumatologist in late October, and I really hope that she isn’t dismissive, that she says, “yeah, no, drinking soda isn’t good and you should exercise, but neither of those things should cause your knuckles to hurt like this.” 

So in addition to alllllll of that, I’m looking to start exercising properly, now that I actually have free hours during the day. I don’t know when I’ll be doing that exercise, but I figure ~30 minutes a day, 4-5 days a week of moderate cardio should do the trick of getting my heart pumping and my body saying, “whoa, hey, we’re taking care of ourselves now! Neat!” We have a membership at a local community center that I plan to use for that purpose, and that’s something I’ll be doing starting next week.

And in between all of this, I’m also getting my tubes tied. With all the new bullshit laws happening across the country (side note: if you agree with any of those laws, you and I are not going to get along) and with any future children I’d want probably coming from a freezer at this point, tubal ligation just seems like a good option to me. And that is happening on October 3, and I am pretty jazzed about it. Hilariously jazzed, too, considering literally everything I went through to have the kids I do have, but honestly, having power over my own body is a good feeling and one I want to maintain as much as I can, all things considered.

(those things being everything I talked about above)

And I’ve got plans to clean out a whole bunch of stuff from our house and I’ve got plans to write again and I’ve got plans to take my camera out places and and and 

Basically, I do, in fact, miss my kids somewhat during the day… but I’ve missed myself a whole lot more.

Waking Up

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So when I got my CPAP, I hoped it would kind of be like in Sleeping Beauty where she just kind of wakes up and is beautiful and fine and life is able to go on. I knew from a lot of experiences I’d read that this usually isn’t how things work, that a lot of people who’ve had severe sleep apnea for a while (based on my history, it’s been at least since I was in high school, if not longer) need time to heal their brain and body from being so sleep deprived from so long; but I still hoped that I’d be one of those people who’d get on the CPAP and suddenly feel great and ready to fight dragons.

The first day was like that. I was too awake to go back to sleep after the kids left for school, and I wanted to stay awake, so I drank a Dr. Pepper in the morning (hey. hey. it’s probably less calories than the caramel mocha whatever you get in the line at Starbucks) and that kind of took me from awake to AWAKE. I was hyper. I have never been hyper. I felt like I wanted to be on a trampoline. I cleaned. And then at lunch, I had another Dr. Pepper and stayed somewhat zingy until I went to bed, and that was that. And I hoped against hope that I would be like that every day because wouldn’t that be nice? 

But that hasn’t been the case. The first day was like that, but subsequent days have been significantly less so. On the one hand, I think this is because a cold (not Covid, we tested so many times) and allergies have been rolling through our house making everyone snore (especially Kyle, very loudly) and making us all more tired than usual. On the other hand, I do think I have a lot of healing to do because it’s been something like 25 years that I’ve been dealing with this, and that sort of damage doesn’t go away overnight.

I have noticed differences. When I am awake, I feel like my brain is more there than it used to be. I used to have trouble keeping my eyes open at all, but now I just feel “normal” tired, if that’s even a thing. Before the CPAP, it was like I couldn’t sit down anywhere without my eyes trying to close on their own. Now, that isn’t a problem. I still feel really tired, but I’m not falling asleep where I sit, so that’s an improvement. I think. I don’t know, it’s hard to say, since it’s been so long since I’ve actually NOT felt tired that I don’t know what not tired really feels like?

I’m still on pain meds that warn that they cause brain fog, and I definitely still have some of that, but it’s not as bad as it was. I don’t feel like whoever’s in charge of the simulation keeps canceling my actions whenever I walk into the room, and I’m not completely losing conversations mid-sentence, so that’s helpful. I’ve even had the mental bandwidth to start being creative again, mostly with journaling (I do something called “junk journaling,” which is when you basically use stickers and scrap paper and whatever to make your journal look like a beautiful mess); and even though I absolutely do not have the emotional bandwidth to deal with the 72 separate apocalypses happening on a daily basis (do any of us?), normal weeks are back within my capabilities, and that feels better.

I think that’s the gist of it: I don’t feel great, but I do feel better. There’s a noticeable improvement. Everyone’s noticed it in the way I talk, even when I’m really tired. They say that I sound less exhausted, which is accurate. And that’s not to say that I never get exhausted (after all, I still have three kids and a life going on), but it’s not just my constant state of being.

I’m trying to push myself a little. This week, I’ve been trying to go to bed a little bit earlier so that I can get up at the usual 7:15-7:30 wake-up time and stay awake, but it’s a weird balancing act. On the one hand, I don’t mind going to bed a little earlier as a general rule, but on the other hand, I absolutely struggle with revenge bedtime procrastination. I feel like there aren’t enough hours in the day to refill my own emotional cup, and I know that if I don’t do that, the kids will be the ones to suffer for it because I won’t be able to engage with them the way I want to. 

Which is, after all, a big reason why I’m working on overall improving myself: to be able to engage better with my kiddos.

The next step is, I think, being more active. We’ve got a membership to a local gym/community center so that Sam can have swimming lessons there (Sam, by the way, HATES swimming lessons), and I want to start using their facilities either in the morning when the kids are in school or in the evening when the kids are in bed. I don’t know, though. Every time I try to start being more active, I end up failing somewhere along the way, and it frustrates me. The times I’ve managed to incorporate more activity into my daily life are times when it wasn’t a choice: when I had to walk ages to get to classes or walk to the store or things like that. Where we live now, walking is just not a thing that can happen. The roads have no sidewalks, and we live on a really steep grade, and while I could absolutely do that eventually, right now, it feels daunting. 

As does actually going to the gym. 

But I still want to try. 

That’s really the theme of it all. I don’t know if I’ll succeed, but I still want to try. I don’t know what the eventual outcomes will be, but I can’t really find out if I don’t actually make an attempt. And the attempt is scary, mostly because of the potential for failure, but. Well. 

We’ll see what happens.

Tired

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I’m tired. And I’ve been tired for a very long time.

I don’t remember the last time I got a good night’s sleep, and I don’t say that in an overdramatic parent sort of way. We all have a hard time with sleep and rest as parents–the kids get you up in the middle of the night, you worry about them, they wake up at 5:30 a.m. for no reason. Parenting is exhausting.

But that’s not it. 

I don’t mean it in the daily grind sort of way. We get up and commute to work and subsist off caffeine. Our supervisors demand too much of us, and by the end of the work week, it’s all we can do to plop down in front of the TV and binge watch something so that we can have conversations at lunchtime. The capitalism grind is exhausting.

But that’s not it.

I don’t mean it in the school sort of way, where you stay up all night working on a paper or studying for finals and then hold your eyes open with tape the next day and crash afterwards, or where you and your friends are so wired after studying for those finals that you go to Dunkin Donuts at 3 a.m. in weird clothes to try and get whatever coffee and donuts you can to push through. School is exhausting.

But that’s not it either.

Everyone I know has dealt with those exhaustions, so I figured mine was just more of the same. It was easy to write off how tired I was when I was in high school–after all, school started at 7:40 a.m., and I was in AP classes and had extracurriculars and church and friends keeping me out late. And no, it wasn’t preventing me from getting at least 6-7 hours of sleep a night, depending on what I was doing, but of course I was tired then. And then college–the exhaustion ebbed a lot then because I planned my day around it. When selecting classes, I avoided anything earlier than 9:30 a.m. and kept my afternoons free for napping as much as possible. I did stay up incredibly late, but not so much that I wasn’t getting any sleep, and I still needed those naps in the afternoons, every day. But I wrote that off because, well, it’s college. Everyone naps in college. Right?

When I started working a regular 9-5 job, the exhaustion resurfaced. My first job, I had to leave the house at 7:15 a.m., at least if I wanted to beat traffic, and I was so tired that I kept making stupid mistakes on the job: filing things incorrectly, forgetting who told me what, that sort of stuff. Eventually, I left the job to substitute teach for a bit, and I always ended up at schools far away. I’d feel so tired during the morning commute that I’d have to slap myself to keep awake, and then I’d come home and nap as long as I could. I told myself that I was staying up too late or that I just had fucked up my circadian rhythm in college, because obviously, it was my fault, right?

And then I had kids.

And that didn’t help, because kids exhaust a person. At gentlest, they’re a lot of work. I blamed being more tired than the average parents on my being autistic, because all that sensory input and all that socializing at all times of the day forever is a lot. When I was working AND raising Sam, I’d reach the end of the work day and only have the energy to sit on my rocking chair with him and watch TV, to the great concern of both Kyle and Kat. They worried that me having another kid would result in more of the same, but for a hot minute, I proved them wrong. When the twins were little–not infants, but around the time Sam started kindergarten–we had a good time. We played all day, I was very tired but I could do stuff. 

And then the pandemic and then my spine and then everyone started school, and I thought I’d be less tired, but here I am. 

I’ve tried all sorts of explanations. The medication I’m on for my nerve issues does make a person pretty tired, so I thought maybe that was it, and that getting off the medication would make it so that I could get through my days without a nap again. The pandemic flushed my mood right down the toilet, and I figured that probably was a contributing factor. I had all of these reasons, and they finally came out when I talked to my prescribing RN a few months ago, frustrated that I was losing more than half of my day to sleep.

Because I love naps, but I like to take naps for pleasure. I like taking naps on days when it’s raining outside or crisp and cool or it’s gently snowing. I like looking out my window and letting nature kind of hypnotize me into a nice, relaxing sleep that doesn’t last too terribly long and makes me feel rested afterwards. These naps don’t make me feel rested. I think the last time a nap made me feel properly rested, I was fresh out of college and working just part time and dozing after work. 

So anyway, I talked to my prescribing RN with frustration, and she referred me to a sleep therapist, thinking the issue was that I had insomnia. And, I mean. I have had insomnia in the past. We all have nights of insomnia. Most of mine lately stems from achy legs when there’s a front coming through or else the general weight of “ah, neat, living through yet another major historical event.” 

BUT THE INSOMNIA WASN’T THE THING, AS IT TURNS OUT. Because my sleep therapist had me keep a sleep journal recording how long I thought it was taking me to fall asleep and how long I was sleeping, and as it turns out, I’ve been getting upwards of 7-9 hours of sleep every night, falling asleep within half an hour, and doing relatively well with the getting to sleep bit. And I’m even staying asleep, as far as I can tell, for most of the night, and that seems to have been the case for most of my life. 

So my sleep therapist and I both said, “wtf” and she ordered me a sleep study. I got all these components that I brought home with me and strapped to my body–one for my chest to register whenever I took a breath, one for my nose to register when air was coming in and out of me, and one for my finger to measure my pulse and how oxygenated my blood was throughout the night. 

AND WOULDN’T YOU KNOW. It’s not insomnia. It’s not me being lazy. It’s not me staying up way too late or being unable to handle life. It’s severe central sleep apnea, and it’s probably been with me for a very long time.

This isn’t the sleep apnea that you get when your tongue blocks your airway or your neck is just too heavy to keep your airways open. This is the sleep apnea you get when your brain forgets to tell your body “hey, maybe we should keep breathing” while you sleep. Rather than choking and gasping for air as your airway gets blocked by your tongue, and rather than being fixable with just losing weight or wearing a mouth guard, you just stop breathing. 

Which is bad.

Moderate central sleep apnea happens when you have around 30 incidents of not breathing in a one hour period. The night I was monitored, I had 40 incidents, and my blood oxygen dropped to 79% (which is, for the record, REALLY BAD). The pulmonologist I saw after and my sleep therapist both told me to really push the sleep center to get me in as soon as possible so I could get a confirming study that would also see what kind of titration (read: forcing my body to breathe when it doesn’t do so on its own) works best for me. 

A lot of people with sleep apnea do well with a CPAP machine, which forces air into your lungs at a steady pressure (set up during that in hospital study to see what pressure you need to just keep breathing while you sleep). Other people do better with a BiPAP, which forces air into your lungs at a harder pressure when you’re inhaling and a gentler pressure when you’re exhaling. And then there’s an ASV, which is a BiPAP that learns your breathing patterns and adjusts accordingly. And it’s all very complicated but necessary because my body cannot do this one very basic thing that it should’ve been doing consistently since I exited the womb.

I’ve got options, basically. And I’m looking forward to them on one level because I am so TIRED of being TIRED. It really is just an emotionally exhausting thing to be this tired all the time; you want to do so much and BE A PERSON, but you only have enough energy to exist. Even the things that are usually fun fall short because you’re too tired to put in the effort you want. 

But then I’m also scared because I’ve been this tired for so long that I don’t know who I am without this permanent exhaustion that feels bone deep. Am I going to turn into some sort of raging dictator who’s angry that not everyone is on my level of dragon slaying awakeness? Or will I just be the engaged and clean mom I’ve wanted to be for a while? Will I finally be able to kick my own ass into actual activity or will I just say “nah” and remain a blob but this time able to focus on things?

And THEN I’m frustrated that it’s taken this long to recognize that it’s a problem because I kept dismissing my own health issues and had them dismissed by everyone around me. Of course I was tired, high school and college are hard. Of course I was tired, I was going to bed at 10:00 every night instead of 9. Of course I was tired, I had hobbies outside of work. Of course I was tired, I had a baby and then two babies. Of course I was tired, I was working and raising a kid at the same time. Of course I was tired, there’s a pandemic on and also I’ve got a spinal injury and depression. Why wouldn’t I be tired? Or maybe I wasn’t tired, maybe I was just lazy. Maybe it wasn’t that I couldn’t physically muster the energy to clean and roll around on the floor with my kids and go for a walk and have hobbies and a life. Maybe I just didn’t want to put in the effort. Maybe I preferred to just dick around on my phone because effort is bad, and after all, I am just a lazy Millennial with a rebellious streak or something.

I internalized all of that. And when I think about how that kept me from actually getting diagnosed and treated for so long, it scares me and enrages me. My level of sleep apnea is so severe that it can cause brain damage and seizures; somehow, I’ve gone this long without that, but you can only stay lucky for so long. Since I found out the results of the study, I’ve been afraid to sleep because I know that it’s entirely possible that this would be the night I’m not lucky. 

And I’m furious that my exhaustion has been so easy to dismiss for my entire life, as me just being “low energy” or “lazy” or something along those lines. That it never occurred to me that anything about it was abnormal and that it was so easy to say, “oh, that’s normal.” It’s like when I had my gallbladder issues after Sam was born; I found it so easy to dismiss the 11/10 pain because the postpartum time is supposed to be painful, aches and pains are normal after you give birth, etc. 

But that wasn’t normal. And this isn’t normal. And I don’t know what it is about me that makes me so ready to dismiss real medical problems that I have, but I do know that I feel vindicated that I haven’t been lazy my entire life, that I may very well be able to handle working and having a kid and having three kids and having hobbies and writing and exercising and all of that. 

I’ve just been fighting with both hands tied behind my back.

July

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The other day, I realized I hadn’t written anything the entire month of July. 31 days, no writing, just me buckling in and holding on for the month. And it’s been a month, but it’s been a month where comparatively little has happened, so it’s not like I have a whole lot to talk about overall. 

We left the month intentionally empty because I was supposed to have my spine surgery on July 1, which would’ve had me still recovering for the rest of the month and then slowly being able to sit up more and more again and eventually getting my life back, BUT that hasn’t happened. Instead, July was nothing but rain and nothing, over and over again. 

I don’t mind the rain. I overheat so easily for so many reasons, and having nothing but rain all month was nice. But despite going on several dates with Kyle over the month of July and despite leaving the house with some regularity, it felt like the month just existed in a limbo of not giving a fuck. And then that ultimately cascaded into me giving too MANY fucks at the very end of the month for a variety of reasons, which is all to say that I spent a lot of last weekend crying and getting a headache from doing so. 

It’s basically that whole tripping at the finish line feeling about the pandemic combined with me letting the stress of Kyle not having a job get to me. For the latter, I’m not surprised that Kyle isn’t employed yet because even in the best of times, finding a job takes a minute. And he’s had a LOT of nibbles and basically hasn’t gone a week without half a dozen interviews or technical screenings or what-have-you. But, you know, you try to keep a smiling face despite things not exactly being great and eventually, things are going to crack somewhat. And I cracked. And I’m fine. Sort of. Probably not that much. 

My therapist has basically been pointing out to me that I’m treading water right now. Three special needs kids at home, very little break for them from anything. Husband out of a job. Bills coming due. A pandemic (on that point, I am so very sick of catering to people who are so afraid of science that the idea of science helping them is a completely foreign concept) that seems like it will never end. My own health being on the back burner for the foreseeable future.

Yeah, that’s a fun one. When Kyle lost his job, we lost our health insurance. We signed up for a different health insurance through the state website, but shortly after getting on that health insurance, the state called to tell us that no, actually, we had to be on basic bitch state health insurance instead, and that unless we choose the correct basic bitch program through state health insurance, we can’t get actual healthcare for the foreseeable future. No surgery to fix my back, no primary care, nothing but emergency care, but at least we’re covered for that?

Oh, and if that wasn’t enough, if Kyle ever gets an unemployment check (yeah, still haven’t received those, don’t know what’s going on there), we’ll have to report that income to the state and switch health insurances again, but at this point, we’re probably not going to get any unemployment checks until roughly January. Which nobody knows really why. In theory, it’s because Kyle’s previous PREVIOUS employer (not the one from which he got laid off in June but the one from which he got laid off LAST YEAR) needs to confirm to the unemployment department that he’s been laid off from them for a year, but I just??? 

Like we’re really fortunate to have family helping us through this stressful time, but if we didn’t? Are we supposed to wait for the whims of enormous corporations to ensure that we can put food on the table? 

(if anyone was wondering, being on unemployment SUCKS, nobody would do this unless they had to, if you think they would, maybe go read something outside of your own echo chamber for five minutes; also if anyone was wondering, that we don’t have universal health coverage that’s not tied to employment in this country is frankly barbaric)

SO ALL OF THAT TO SAY that I put my surgery off AGAIN. It’s been bumped to at least January now because I can’t imagine trying to get through the beginning of the school year and the potential beginning of a job for Kyle while stuck flat on my back recovering. It’s definitely the best decision, but I feel angry and frustrated and stuck. I want to do so much and there’s so much that could improve my physical and mental health, but I’m so afraid of triggering that severe pain again before I’m in a place where I can have surgery to repair it, so I end up being a lump on a log, which really just makes everything worse.

Hence the treading water thing. Hence the not writing. Maybe I’ll have more to write about later. I don’t know. But right now, I just feel so drained and angry and stuck that it’s a more exhausting experience than it should be. 

Spring

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I started writing this a couple of weeks ago because I was feeling ranty, and I don’t even remember what I wanted to rant about (C-sections and autism, I think? Tl;dr – my C-section was amazing and I would do it again, Autism $peaks sucks, and autistic people like myself and my kiddos need acceptance, not just awareness, the end). And now, I’m looking at it like (a) I’m not in a ranty mood anymore, so I’m not going to rant; (b) my blog is WAY too depressing, WAY too often; and (c) what if I want to talk about good stuff?

So you’re not getting a rant today. Sorry!

Instead, you’re getting me cheerfully updating you on my life, why I’m feeling optimistic, and what’s up next!

BIG OPTIMISTIC POINT #1: SHOTS!

My name is Abby, and I am FULLY VACCINATED AGAINST COVID-19!

Obviously, all sorts of crazy things could still happen. The world is still in some measure of chaos, and who knows what variants might come from Brazil or New York or something. I sincerely doubt anything will mutate so much that we’ll be back where we were in 2020, but anything is possible. 

BUT for now, I am 90-someodd percent protected from getting infected. And oh, my god, it feels so GOOD. And even better, almost my entire family that can be vaccinated is very close to the same boat! My dad got fully vaccinated around the time I did (I qualified earlyish because of my asthma and obesity, he qualified earlyish because of his old) (ha ha), and my mom and Kyle both have one shot under their belts. My sister is up next once I find her an appointment next week (I’m the family’s designated “vaccine finder”), and I keep hearing from people I love that they’ve finished their second shot, that they’re fully vaccinated. 

And I know that *technically* we’re not supposed to jump right into everyone hanging out again, but GOSH, I just really want to go and give my aunties and uncles and cousins very tight hugs because I haven’t seen them in forever. And I can’t wait to see people in person after canceling playdates and get togethers all last year. Two of my cousins had babies in the last year and I haven’t even showered them with gifts like they’ve done for my babies yet! And we’re all so close to being vaccinated, and I’m just like AUGH please please PLEASE let us be able to get together for the Fourth of July, that would be amazing.

(granted, I will probably be on copious amounts of painkillers–more on that later–but I wouldn’t miss it for the world)

My favorite, favorite, FAVORITE shots moment came really early on when my friend who’s an ICU nurse got her shots. She’s been really heavily on the frontline this entire time and has been so strong and brave (which, I remind everyone reading this, doesn’t mean she hasn’t been afraid or had moments of weakness, but that she accepted those facts and continued to be the amazing, compassionate nurse she is anyway), and knowing that she isn’t going to get Covid was just like…

(I don’t even have words for it, so just picture me squealing with delight and bouncing)

The pandemic is far from over. There’s still a non-zero chance that my kids will get sick, and that makes me very nervous, BUT the risk is decreasing pretty steadily. Shoot, look at death count graphs lately, and you see a very sharp drop-off starting about two weeks ago, at least in states where the most at-risk got vaccinated first. These vaccines work. When I got my second shot, I teared up a little bit, not because it hurt, but because it feels like a genuine real time miracle: the world got together to fight back against a collective horror and we’re going to win. It is amazing what human beings can do when we stand united.

And related to me getting my shots…

BIG OPTIMISTIC POINT #2: PLANS!

I have plans.

Maybe it’s just how my autistic brain functions, I don’t know, but I am at my absolute best mood-wise when I have plans. I love looking at the future and being like “oh awesome, something to look forward to.” And honestly, the pandemic rained on that particular sort of parade a lot, because you just couldn’t plan for anything. Inevitably, things would close or get cancelled, and you’d be stuck at home, thinking too much about Tiger King or something (seriously, how was Tiger King a whole-ass year ago?). 

But I’m vaccinated, Kyle will be fully vaccinated as of May 6, and we’ve got plans.

Plan number one is our anniversary. We’ve been married for ten years as of May 22, and I was feeling mildly sulky about it not being as big of a deal as it could have been because of Covid, but then vaccines actually worked and I was like, no, you know what? This is a big deal. We’ve been through a lot together, some really difficult years, but what we haven’t been is on a real actual date without the kids in more than a year. 

So we’re going on a BIg Date, by which I mean we’re flying to Florida for a weekend.

It’s a risk, but it’s a calculated one. We’ve been reading every article that’s come out about Covid, variants, and vaccines for ages. We’re not data scientists, but we’re human, and while we’re not crazy about the idea of being in a plane with recycled air for three hours, we’re also vaccinated. So we booked a first class flight (anniversary trip, plus it ensured we wouldn’t have to sit next to anyone who didn’t share a house with us, AND it meant that we could be in the absolute front row with nobody’s air coming back at us), we rented a car, we made the plans. Of course, we’re hitting Disney. Of course, we’re getting our toes wet on a beach. Of course, we’re still going to the Melting Pot. 

And I feel beyond excited and also a little stunned, like is this really a thing that’s happening? I half expect everything to get cancelled again, and it may very well do just that. 

But oh, to TRAVEL again. The thrill of going places, of using tickets, of the smell of stale coffee and exhaust, of announcements over a PA and the knowledge that something exciting is happening, I’m just over the moon about even being in an AIRPORT again.

And then we get back, and life is going to continue! I’m getting new glasses! I’m prepping Sam to go back to school in the fall!

I’m having surgery!

BIG OPTIMISTIC POINT #3: BACKS!

Remember back at Thanksgiving, when I had such agonizing sciatica pain that I went to the ER and they were like ‘mm, that’s nice’ and gave me a nerve blocker and a lot of painkillers and promised they’d follow up but very little came of that because everything is 6000 times slower because of Covid so I’ve been gradually feeling more pain ever since and panicking about the idea of it getting WAY worse and me basically having to shit in diapers all the time?

(my brain is a fun place)

So despite Covid delays, I did get to see an orthopedist in January, and he recommended that I go get an MRI. The MRI was its own fun thing because they were already booking a month out, but then Kyle’s company switched insurances at the beginning of March (and my appointment was initially on March 5, I think?), so they had to cancel the appointment, get approval from my new insurance, and rebook the appointment. 

WELL. 

The new insurance said they wouldn’t cover the MRI because I hadn’t met my deductible yet, so the office just. Didn’t rebook it. And blah blah blah, I basically had to call them and say I’d pay out of pocket for it, which, long story short, is part of where our Biden bucks went (more on those later). So my MRI, which was supposed to be at the very beginning of March ended up happening at the very end of March. And it was a fine experience. I got there before sunrise, lay perfectly still in a loud machine while looking at pictures of a calm beach, and then was told I’d have my results soon. 

So here’s my back:

At the very bottom on the left, you can see the root (haha) of all my problems: a herniated/ruptured disc that’s compressing my S1 nerve root between itself and my magnificent bone spurs. On the right, you can sort of see the way the erupted disc material is covering up the nerve in question, which is why I can’t feel any of my inner thigh and otherwise feel like cold lightning is shooting down my left leg. It’s really fun.

The first doctor I saw wasn’t too big on the idea of surgery; he wanted to start with conservative approaches, like epidural injections to just turn off the whole nerve for a while, which would’ve been great back in October when the problem started. But now, it’s the middle of April, nothing has gotten better, and I just want to get my life back. And I know that surgery doesn’t guarantee me getting my life back, but I feel like it’s doing more than just putting a booboo bandaid on it and wishing me good luck. 

So the second doctor I saw agreed, but said that the surgery might be somewhat complicated by my size (because I am, in fact, fat), since their retractors are only so big, so if they can’t reach my spine during the surgery, they can’t do it. BUT in either case, they scheduled me for surgery on July 1 (and I’m like HNNNNNGH SUFFERING FOR TWO AND A HALF MORE MONTHS THIS WILL BE FUN), so we’ll see what happens. I’ve been judicious about my diet since that point (save for Easter week, when I just ate brownies and chocolate bunnies as quickly as possible so they’d go away), and I’m hoping to find a way to walk every day (which is harder than it sounds, since we live on a very steep hill, like it feels like a 45 degree grade, and that is B A D for herniated disc spinal issues). 

But either way, we’re actually doing something, and I know where the problem is now. Once the surgery is over, I can reenter physical therapy and focus specifically on healing that area instead of just doing general stuff and hoping it works (which I think actually made things worse before). And with any luck (read: hard work on my part), I can finally put my back behind me. 

BIG OPTIMISTIC POINT #4: MISCELLANEOUS!

And a list of other miscellaneous things that have me happy right now:

  • We bought a new (to us) van yesterday. A 2016 Honda Odyssey fancy pants version with heated leather seats and screens in the front and a cooling box and seating for eight and rear temperature control and SO MUCH SPACE and everything about it is wonderful. It’s a little bit of a price stretch at the moment, BUT it’s worth it because our old van was basically falling apart at the seams. 
  • Sam is finishing up his testing to go back to public school in the fall. A lot of it relates to him being almost obviously on the autism spectrum and scoring SUPER HIGH on ADHD tests, and we want to make sure that he’s able to get whatever accommodations he needs in school next year so that he doesn’t fall behind at all (because he’s absurdly smart but he’s also very… mmm, executive dysfunction-y). We’ll be having that meeting the day before Kyle and I leave for Florida next month and with any luck, they’ll really see him and be able to give him whatever accommodations he needs next year.
  • The twins continue to excel in school, which is wonderful. Their vocabularies are soaring, and they’re absolutely loving their class and their friends. Carrie, who was already pretty conversational, has added so much vocabulary to her speech, and it’s hilarious. She’s got enough vocabulary to express herself more clearly but she also sometimes grasps for words, like the other day, she wanted us to close the car windows because they were messing up her hair, so she said, “Turn it [the windows] off! My hair is not working!” And that was adorable. And Isaac has gone from being incapable of expressing himself when things are hard to being able to confirm in words what he wants when we ask him. Today, he informed me that he wanted the lights turned back on in his bedroom (because he didn’t want to sleep yet), and he’s just overall been so much more talkative and happy because he has words and is understood.
  • Also the cats are awesome. And Kyle is awesome. We’re all awesome.

Spring is trying its best to start in these parts, and thankfully, it feels like life itself is coming back to life. And that’s a good feeling.

Parting Clouds

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I feel like this blog has been an absolute downer for the past year, though understandably so. The last year has SUCKED. I don’t think anyone had an objectively good year last year (except Big Daddy Elon Musk, but billionaires don’t count towards people having good years), and I was scrolling through my blog reflecting on how… just MLEH I’ve been about everything in the last twelve months. And again, completely understandable, but also I feel like that can’t have been fun to read. I’m sorry.

But here we are, encroaching on March 2021, one year of pandemic and social distancing and 500,000 people dying because assholes and masks and so on and so forth, and I’m actually starting to feel something that tickles a bit like hope. Real hope, not the false hope that kept popping up over the last year when people were naively like “it’ll be gone by summer!” or things like that. Real, honest-to-god hope.

After all, this is roughly the timeline they told us to expect back in mid-March of last year, when everything shut down and everything changed. Mid- to late-2021. We’re right on schedule. 

I’m getting my first Fauci ouchie tomorrow, 4:30 p.m. I don’t think I’ve been this excited about a needle since the first injection for IVF, way back in 2016. My state, dear old Massachusetts, has kind of bungled the process for people to make appointments–my dad, 68 and with a heart attack in his medical charts, hasn’t been able to get an appointment, so I’m refreshing all sites frequently to try and snag one for him–but by some flash of luck, I woke up the other day to an alert on my phone telling me that a CVS near me had appointments available. I fit squarely into Tier 2 of the second phase of vaccine rollout up here–obesity and asthma qualifying me as medically at risk of a Bad Time–so I signed up. 

And I’m ready.

(even if I’m a bit frustrated that Massachusetts hasn’t bothered to start prioritizing teachers yet while other states have and the websites to get appointments are basically strung together with some twine and duct tape and a few prayers and GOD, I wish I could take a hammer to said websites and get my handful of coding friends to rebuild them functionally from the ground up)

I have plenty of friends who’ve already been vaccinated for various reasons, ranging from frontline workers to teachers to people with medical issues and everything in between. Of that plenty, many have experienced the “your immune system is working” side effects–the aches, the fever, the chills, the generally feeling like shit from about hour 33 to hour 48 after the second dose. I’m ready for that. Kyle’s been keeping in touch with his boss about what’s going on, so with any luck, when I get the second dose, I can just coast through all of those side effects feeling vile but being mostly unconscious.

But I’m ready. I’m ready to not be afraid to go places besides Target or to not be afraid when I’m IN Target because the people behind me don’t seem to grok that six feet and six inches are not the same thing. I’m ready to feel like I’m not going to be putting myself in more danger if I have to go to the doctor for whatever reason (seriously, in the past year, I have avoided going to the doctor so many times I probably shouldn’t have because I didn’t want to accidentally expose myself). I’m ready to hopefully not be a link in a chain of people getting sick (like we don’t know yet that the vaccine prevents or reduces transmission, but the science–even with the new variants–looks pretty good so far).

And I mean. When even the most conservative estimates have everything easing up by summer, it’s hard not to be hopeful, outside of the trenches.

(in the trenches is another story, and every time I talk about hope, I think of my friends who do work on the frontlines and wish that I could somehow have a million dollars each to give them so that they could go on the most luxurious, relaxing, magical vacations of all time. Like hell, wanna spend two months on sabbatical in Hawaii? Go nuts, aloha. French Riviera whispering your name? Au revoir, you amazing heroes)

I’m getting vaccinated tomorrow, and then the twins turn three on March 14 and start school on March 15. Sending them in person isn’t a decision we made lightly; even though the school they’ll be attending has had exactly 10 cases out of 300 students and about 50 staff (and none of them in the preschool), the risk isn’t zero. On the flip side, though, Isaac has stagnated and regressed so much since daily ABA stopped, and I HATE phrasing it like that because it makes his autism sound like this horrible thing, and it’s NOT, but at the same time, I can feel how badly he wants to communicate with us, and goddamnit, I can try with the rudimentary PECS and I can say the words and do all sorts of things as his mom, but because I’m his mom, there’s a lot I can’t do. I’m not trained or qualified to do so much of it. 

He really was making such incredible progress when he had ABA five times a week, and I know the language is there. And he wants to express himself and is SO HAPPY when we understand him. And preschool will give him an opportunity to be better understood, whether that’s vocally or through signs or through PECS. Whatever he needs. I just want him to not feel like he can’t be understood, because to me, that’s about as lonely and terrifying as it gets. 

And Carrie is something of a ragdoll. She’s clever and sweet, and where communication is concerned, she’s at age level if not above it. BUT when it comes to physicality, her muscle tone is almost comically low. She seems comfortable wherever she is, which is great, but she gets tired quickly because she has to put more effort into making her muscles work than a kid like Isaac (whose muscle tone has always felt high to me because he’s always. so. tense.) or even Sam does. It impacts her ability to use her fine motor skills with holding a pencil or getting herself dressed and undressed, and I have no doubt it’s impacting her digestion. In the long term, it’s going to cause problems for her–she’ll be in pain, and I don’t want that at all. And if we can get started fixing it now, if I can get her therapy now, maybe she won’t follow in my footsteps and end up in remedial gym or getting an MRI for sciatica and feeling like she’s in her 90s when she’s not even 40 yet.

Plus, they’re SO good with masks. It’s kind of surprising, honestly. I would’ve expected the twins to just hate wearing a mask and to fight it all the way, but the two of them are absolute champs. They even have Barbie and Hot Wheels disposable masks along with the other disposable masks I’ve gotten them for the remainder of the school year. I think we’ll be okay. I think they’ll thrive in school, and I think we’ll be okay. 

For the first time in forever…

…I can kind of see the rest of the year clearing up, like the way the sky clears up when it finally stops raining after a particularly long stretch of wet days. I feel like when I say, “when the kids go back to school in September…” I’m not doing some sort of wishful thinking; I’m saying something that will happen. When Sammy goes back to school with his friends, when the twins are in preschool five days a week, when I see my extended family for the first time since Christmas of 2019. WHEN, not IF.

Speaking of Sammy going back to school (WHEN that happens), I got in touch with the special ed department at his school to see if they could evaluate him for ADHD and autism or at least just to see if he has anything that would require an IEP to deal with in the coming year. His therapists have him on a waitlist to see if he can be evaluated outside of the school, but because of Covid, that waitlist is excruciatingly long–we’re talking years–and I don’t want him to start second grade at a disadvantage. I know that whatever else is going on, he deals with a lot of executive dysfunction and hyperfixation. I know that his mind goes so fast from one thing to another to another, I know that he acts like boredom is torture. I know that the idea of failing at something even a little brings him to tears, no matter what reassurances we offer. I know that if he’s asked any question about himself, no matter how benign, he shuts down and furiously refuses to answer. 

I don’t know what that all adds up to. I do know that it affects his schoolwork. That he melts down when something is hard for him, that it’s an absolute WAR to get him to do his social studies and reading. That he doesn’t focus, can’t really focus, even on subjects he loves. But give him Pokemon or Minecraft or the deep sea, and he will tell you everything in excruciating detail. That he’s terrifyingly smart–doing third grade math as a first grader and absolutely OWNING it–but that he needs someone to help him apply that intelligence.

And I don’t know. Maybe it’s that I’m not as good of a teacher as I like to hope I am. When he’s on, he REALLY gets stuff. He’s getting straight As in math without even blinking, and I think he’s doing okay with improving his spelling and handwriting, but I feel like there’s something about his learning style that’s out of my reach, and if nothing else, I’d like to see if the staff at his elementary school can identify it. 

SO. 

A lot on my plate. Again. I can sort of feel my sciatica flaring, but I’ve been more careful to take time off and be diligent with my medication because I am NOT doing that again. I have an MRI to look at it up close on the 8th, and until then, I’m just taking it all one day at a time and knocking items off my to-do list little by little. 

And feeling like the sun is starting to peek through the clouds. Which is nice.