#57: We do have a child, actually
Society hasn't caught up to acknowledge milestones like this
A couple of years ago my parents went on their first real vacation since before the pandemic. They actually rarely go on trips together, and the reason is my older sister. Finding someone to care for her is really difficult. Most family members who have tried it have quietly decided they won’t do it again. So my parents turned to me, and of course I said yes and that’s how I became her primary caretaker for three weeks. For me, those were an emotional three weeks in which I quickly learned how much I didn’t know.
In that time I organized a day at the New York Hall of Science with my sister, my friend, and his 10 year old daughter. He was making my sister laugh and I was watching them and honestly feeling kind of proud of myself for orchestrating this outing, which was going well. Then I noticed she had wet herself while laughing.
I hadn’t reminded her to go to the bathroom before we left. She doesn’t remember on her own, and it was on me to remember for her and I just hadn’t. I felt so dumb for not remembering to bring a change of clothes and I was running on maybe four hours of sleep and while I was cleaning her up she kept going “sorry! sorry! sorry!” over and over, and I realized she understood what had happened and she was apologizing for it, which really wrecked me. I cried right there in the museum bathroom, which wouldn’t be the first time in those three weeks or the last.
My sister is a year older than me. She was born extremely prematurely, without a fully formed esophagus, with heart complications, with the kind of start to life that recalibrated every expectation my parents had ever since. She can’t read or write, or sign, requires assistance being fed, using the bathroom, bathing, and can’t speak in complete sentences. Someone always needs to be with her, always watching and anticipating, always remembering things that she can’t. She has scars on her torso from a feeding tube, and I’ve known those scars my whole life.
My parents have been caring for her full time for nearly 36 years. They’re mostly retired now, with friends scattered across the country and world who invite them to visit but whom they always turn down. It’s not because they don’t want to go but because taking her anywhere is a serious undertaking, because she gets tired quickly, is easily overwhelmed, and can’t communicate when something is wrong. The stakes of something going wrong are too high to hand off to someone they don’t completely trust, which is…everyone. So they mostly stay home, and they do it without complaint. Watching them has always made me feel simultaneously moved/awed but also super guilty, like I’m getting away with something just by living my life.
I live a very full, cushy life and I want to be honest about that. I’m a hedonist, after all. When my parents asked me to step in for three weeks I said yes immediately but privately it dawned on me the weight of what I had agreed to. I started to write that you can’t really explain the relentlessness of it, how you can’t be off even for a moment, even when you’re exhausted or overstimulated and just need five minutes alone. But I know new parents know this feeling all too well.
I brought my sister to my monthly gratitude dinner because I didn’t want to cancel and I had to leave right after instead of staying out with friends like I always do. I tried bringing her to my apartment for one night instead of staying at my parents house so I could be in my own space once, but neither of us slept. She was yelling at me for being in her space the whole time, and I just lay there staring at the ceiling and crying, feeling like the worst person alive for being annoyed about it.
There was one night I was feeding her dinner, every single spoonful because she won’t do it herself, and I was so frustrated, so visibly so. I went to bathe her, and I saw how thin and frail she was, how her whole body shivered violently just from the air for a second before she got under the warm water, and I saw those scars, and I thought to myself what is WRONG with you. She is so fragile, and she can’t help any of this. She has been through so much just to be here. And my frustration dissipated.
I felt like a bad person very often in those three weeks. I kept thinking about how my parents have been doing this since before I was born, and I’m just falling apart because I’m losing sleep, just feeling sorry for myself. It’s a running joke among my friends that I’m a diva who doesn’t like to suffer or struggle and I’ve never pretended otherwise but that time didn’t have room for that version of me.
Have you seen the show Love on the Spectrum, a reality show that features folks on the spectrum as they navigate finding love and companionship? It’s very popular with an enormous audience season after season (season 4 comes out next month), and I’ve watched it and also read criticism of it from within the autism community, a lot of which is totally valid. There are moments where the music is goofy, in a way that seems like the audience is being invited to laugh at someone rather than with them, or that the show mostly features really well-resourced families. I do think the show has done something genuinely important which is to put people like my sister in front of an audience that would otherwise never think about them, and show them the range of how neurodivergence is experienced and how it’s so vast but also human. Most importantly they show that these folks want what everyone wants— to be seen, to be loved, to be chosen.
Unfortunately, even with greater awareness, society still segregates this portion of the population away from everyday life and then people act surprised or uncomfortable when we encounter them. My sister is extremely extroverted and I watch her go up to strangers constantly. She doesn’t pronounce her words clearly and people often can’t understand her and you see them cycle through confusion and discomfort and not wanting to be rude but also not wanting to engage. A lot of people are sweet about it, but definitely a lot of people are scared, or they just don’t want to deal with it. And I’ve watched my parents, who have witnessed this for a long time, feel every interaction in their hearts.
A few years ago Louis used to regularly perform in this monthly sketch comedy show, and there was this woman who came to every show and was clearly a devoted fan. The cast and friends would hang out after every show and she always hovered around the edges, wanting to be included, and her mom would watch from a distance looking so worried because someone like her could so easily be manipulated or mistreated. While most people ignored her, Louis invited her to our monthly dinner and invited her to join us to hang out. While she was out of earshot, another crew member pushed back because he found her presence uncomfortable and didn’t want to be around her. In the moment I was really angry about that but I’ve thought about it a lot since and I have more compassion for it now. People genuinely don’t know how to act, and are so worried about saying the wrong thing or reacting the wrong way and the fear makes them retreat, and retreating looks like cruelty even if it isn’t quite that.
I think about myself too. When I was around seven years old I made popsicles for me and my cousins on a hot day, and excitedly handed them out one by one, but didn’t make one for my sister. Truthfully at that age I did not include her in the category of kids I played with. My dad pulled me aside and yelled at me, asking why I hadn’t made one for her. I shrugged the way seven year olds do, because I didn’t understand the question yet and my dad brought up the popsicles for months afterward. Maybe it was years. I experienced a lot of feelings about that over the years, like confusion when I was younger, then a low level resentment toward him for expecting so much of a child, but now I just feel so sorry and so sad. He was just a parent watching one of his children be invisible to the other, over and over, and he didn’t know what to do except to keep asking the question and one day hope to get a better answer.
She’s been rejected her whole life. By schools, by peers, by strangers on the street who didn’t know how to meet her where she is, and my parents feel it each time. That’s their baby, so of course they do.
I still get it wrong sometimes. There have been cousins hangouts where I didn’t bring her because the setting was too difficult, too complicated, but I’d find out later that my mom cried to her sister about it. My mom never says anything directly to me, she’s always so breezy, “just do what you want, live your life, have fun” but I learned that doing this really hurt her. I might be underestimating my sister’s emotions but I also don’t think my sister knows she’s being excluded, and even so, I can’t decide if that makes it better or worse.
Sometime in the last few years, not in one big conversation but just gradually, through the way Louis showed up for me and my sister and the things he said, he made it clear that this wasn’t just my thing to figure out. We talked about how when my parents are no longer able to care for her, he’ll be in it with me. He has said it multiple times over the years and I really want to believe him. But I’m someone who doesn’t like relying on anyone for something this big, and I’m someone who doesn’t believe in finality. I know that people mean things when they say them and that life is long and circumstances change. So I hold it carefully. But last weekend a group of my friends who all happened to be child-free by choice were talking about our child-free futures, and Louis interrupted to say “We do have a child, actually. Charlene is ours.” Everyone nodded solemnly and quietly. My friend Brian told me days later that he went home and thought about that statement for a long time, just Louis saying it so plainly, like it was already decided.
A few years ago we were on a date with this couple and I felt an immediate connection to the woman when she shared that her parents had both passed away and she had been caring full time for her adult brother—who is on the spectrum— ever since. I recognized something in her I had never seen reflected back before. Her partner and my partner Louis have had long conversations about how special it is to take on a caretaker role like that, the weight of it but also the beauty of it. I’ve watched her partner with her brother and I felt something loosen in my chest that I didn’t know was tight. I could cry about them honestly. They have such a beautiful community of friends who have stepped up to help. I can hardly believe that non-blood related people would ever step in to help in that way.
I write a lot about the relationship escalator, which is society’s template of moving through the right sequence of milestones in a relationship. Dating leads to exclusivity to cohabitation to marriage to children. Each step unlocks the next and signals to everyone that this is real, this is serious, this is certified. I’ll keep pushing back on that model as being the only one, but what I really want to say, without making this into a woe-is-me post, is not that I feel cheated out of a celebration. I’m mostly making a cultural observation that others before me have made but is worth repeating: We have formalized rituals for certain kinds of love and not others, and for some reason those are the only things that really count. There’s no card for what Louis said in that room. There’s no venue to book, and no one’s flying in for it. Yet it’s the most significant thing anyone has said to me in maybe any relationship I’ve ever had.
Thinking about what we’re all gunning toward in life, I wonder what the point of it all is. Are we just moving through a checklist someone handed us? We seek promotions, a ring, a mortgage, a baby shower. Is everyone doing these things because that’s just what you do next, or are they making conscious choices about what they want their lives to look like? I trust that a lot of people are thoughtful and I want to be so clear that if someone I care about is doing these traditional things and it makes them happy I am absolutely happy for them, period. It just seems that many people also just go through the motions to get married because that’s what’s next (also tax benefits & hospital visitation rights, I get it!!), or they have kids because they want someone to take care of them when they’re old or something (def shouldn’t count on that). We could stand to interrogate what we want more honestly rather than what we inherited as the definition of a life well-lived, whether that’s inside the traditional template or outside it. I would say that committing to helping someone through something really difficult and longterm is its own category. Perhaps it doesn’t need a milestone name or a party or registry, but I still think of it as a milestone.
My sister’s special interest has always been books, carrying a big stack of them since she was about three years old. Even though she can’t read, she likes flipping through the pages of catalogs, of all things. Right now she’s really into a janitorial supply catalog she found somewhere that I truly cannot explain, and she has an internal inventory system such that if you take away a book she will notice immediately. Her stack gets heavier and heavier and my parents have all sorts of creative ways to distract her so they can lighten the weight of the stack when she’s not looking, because she is too frail to carry it. She also likes to give shoulder massages, really terrible ones, completely unrequested. She loves fart jokes (same), and will belt out Disney songs when she thinks no one is listening.
I commend my parents most of all for showering her with so much love and care with so much patience, and I’m also grateful to all the people who have genuinely, really shown up for her through the years. The future is still an open question for me and I’m trying to make peace with that, while seeking out more information about what is possible for her. I know I’ve been underestimating her for a long time, and I think a lot of us do that with people who can’t communicate the way we’re used to. She said sorry to me in that bathroom and she meant it. Autism awareness month is in April and I wanted to get this out before then, and this one’s a lot more stream of consciousness than other posts but I needed to write it and I hope someone needed to read it. Thanks for reading.
Heated Rivalry fans, have you already gone down the rabbit hole of short films Hudson Williams has starred in? They are all very zany. Maybe start with this one, which I think was filmed just months before Heated Rivalry came out.
I almost stopped reading this post on parenting styles thinking it wasn’t relevant to me, but I liked their breakdown of authoritative vs. authoritarian parenting & how the "I'm the boss and you'll thank me later" approach produces lower confidence and higher anxiety in kids, especially in a US context.
You may know Lindy West from her book and the show Shrill. In this recent Modern Love interview she comes out as polyamorous and the origin story is messy: her husband essentially cheated, she redirects her jealousy into a solo road trip where she rediscovers herself, and eventually ends up in a relationship with both him and his girlfriend. Her fans are skeptical given how coercive the beginning sounds, and I get it. But I hope we're at a place where polyamory gets to have messy origin stories, the way monogamy does, but maybe that’s too hopeful.
Since this newsletter is about the ethical pursuit of pleasure, and good food is one of life’s most accessible pleasures, here’s what’s been making my taste buds happy:
I’m reaching the email length limit here so all I’ll say is that I went to Afghan bakery Diljan and loved every single pastry I got!
This post, Louis' heart, your words, Charlene's smile. All beautiful + deeply moving. Thank you for sharing your world with us 💗
Wonderful post, as per usual. Can’t wait for the next Chinese dinner ! 🥳