I’m so excited to be taking part in tonight’s storytelling event, “Virtually Able: Stories of Disabled Tech Life,” at 7p.m. eastern time. It’s free to tune in—I’m going fifth, but everyone will be great. Come watch us with this link!

Join DISCO tonight

I am thrilled that I was invited to join DISCO (Disabled Storytellers Collective) for another event, and I really want you to join us. The reading will be virtual, on Zoom, on Friday, May 29 at 7p.m. Eastern. All you have to do is click to join, there’s not even an invitation to mess with, but don’t worry, I’ll send out reminder nudges this week. I make NO GUARANTEES about the quality of my story or telling ability, but don’t you want to join me anyway? Of course you do. Look, I’ll even make a button just for you.

Join the DISCO event!

Okay, so now that you have your Friday night plans settled, I can tell you about MY weekend. Apparently I am old enough to have graduated from college twenty-five years ago, which means I am [calculates in head, . . carry the one, oh wait, there isn’t a one. . .], astonishingly close to fifty years old, considering that I don’t feel a day over thirty-four. (Okay, that’s not true—this disability makes my body feel old a LOT.) But it was great. Not just because six of my very closest friends, whom I’ve known since freshman year, came up and several stayed with me in my house, but also because I got to reconnect with women I hadn’t realized I missed. I was fairly antisocial in college—one woman reminded me that I introduced myself at the icebreaker for our dorm/house by wearing a black leather dog collar—and even now I tend to think that the six women I’m on a group text with are really the only ones I befriended. But it was wild: we got to campus and suddenly I saw J, and S, A, and K, and realized, Oh shit, maybe I made more friends than I thought.

A lot of us have similar lives, too: some are divorced, some have kids in their teens or even twenties, some have important jobs. (I thought it was funny that in my immediate circle this weekend, we had an immigration lawyer working frantically to keep people from being deported, a climate change expert working frantically to keep the world from burning up, a NICU social worker working frantically to keep babies and mothers alive and functioning with no resources, a nonprofit arts advisor working frantically to keep the arts a thing in budget cuts. . . Not funny ha-ha. . .)

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Honestly, the only thing I didn’t see was anyone else using a wheelchair.

The last in-person reunion I went to was my ten-year in 2011. (My 20-year was in 2021, a year into COVID and was online.) In 2011, I was not yet disabled. (Well, I was not yet diagnosed. I look back and realize I was having symptoms, they were just easy to ignore.) I was a year away from getting married. I had defended my dissertation the week prior, because I HAD to show up as a doctor, ten years out. I had fun, it was great, I had a picture to show you but it is buried ten years back in Facebook and I just can’t. Here instead is a picture from my wedding, the following October.

So I’d seen my close friends since then but not the majority of women, and I didn’t know how many knew I had progressed to needing a wheelchair, (Not many but more than I thought!) And the college is really pretty accessible, and they had made it easy to reach out to folks who could help. I was not worried about accessibility.

What I did find myself feeling, though, was jealousy. So much jealousy. I feel like maybe I am the only publicly disabled person who feels this way, but oof. I’m not jealous of the children people have—I have fantastic stepdaughters and, despite the concerns of the current presidential administration, I am in no way under-babied. I am not jealous of partners—I have my own, dare I say it, Super Spouse. But I was so jealous of the able-bodiedness of the alums. I was jealous of my friends who were staying with me, and who were able to go easily up and down my stairs. Who went for runs around my neighborhood, while I have never gone for a run around my neighborhood. I was jealous of the alums who snuck into the basement of one of the Quad houses for a secret-not-secret party. Of people walking to town, getting ice cream, walking into stores without worrying about steps or curb cuts. Of all the candid pictures that people could just jump up and pose for on their way to something else. Of the alums I ran into and was able to tell, truthfully, that they looked exactly the same. It’s hard, though, to look over 200+ women the same age as me, who have experienced some of the same things, and wonder how I managed to get the lightning strike.

And at the same time I am so glad I got to take part, that when someone saw me coming—as they always did because I’m hard to miss—that they ran over to see if I needed something, or gave me a hug. That my friends saw what my life is like now, how supportive my partner is and how manageable this disability can be, even as it progresses, how I am now comfortable asking for help, how their existence means so much to me.

I’m sitting with this jealousy. I know it will pass, as all emotions do. (In truth, it has already passed.) It’s hard though. It makes a weekend like this bittersweet, instead of just sweet. I write this newsletter in part to push the walls back and keep them from closing in. Reunion weekend helped with that. But it also reminded me that I have these damn walls in the first place.

I am also leaning in to the fact that I got my calves Botox’d last Tuesday and my semi-annual four-hour-long infusion on Thursday, and we STILL managed to attend a retirement reception, two Zoom events, and two dinners out. It was a busy week. Something had to give.

So I did NOT research anything about Primary Progressive MS, which I promised that I would do and which I WILL do, I swear. And I did not parent well—admittedly I only parent Rocky now, which is easy enough, but he did come down with giardia. That is a parasite, and he has been, as Michael says, “peeing out his butt” for the better part of a week. Don’t worry, we got him some meds but only today, because my approach to parenting has always been a variation of, “Are they dying? No? It’s probably fine then.”

So I went into Mother’s Day on a bit of a down-slope, but I want to blame the infusion because why not? And because people have asked me about the infusion before. Let’s talk about infusion day! My fellow auto-immune folks know about infusions; depending on what you live with, you might get an infusion once a month, or every six weeks, or every six months. All of them do some sort of hatchet job on your immune system, whether suppressing it through steroids or decimating it through targeted cell murder. I’m on Ocrevus, which is a “mab” drug (its real name, ocrezilumab, ends with MAB), which means it’s an immuno-killer. Other mab drugs include rituximab (Rituxan), ofatumumumab (Kesimpta) ublituximab (Birumvi), and so on and so forth. Basically they go after either your T cells or B cells, killing the ones you have and preventing the manufacture of more for a month or two. The only drugs approved for PPMS are Ocrevus and Kesimpta (B-cell killers), so that’s what I work with. Kesimpta is a monthly shot, and honestly, I just got sick of shooting myself up every month; Ocrevus is four hours every six months, and I can order Dunkin Donuts through Uber Eats, so obviously my choice was clear.

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Mab drugs work, I guess, by preventing the B cells of your immune system from attacking your central nervous system (mostly my spine, in my case), and thereby preventing relapses, which then prevents the progression of the disease. But Emily, I hear you say, you don’t HAVE relapsing MS! So what do mab drugs do for me? Well, dear reader, Not a whole fuck of a lot. It’s only been shown to have a positive effect for 35 percent of people with PPMS, which is better than zero. Unless (as I think I am) you’re in the other 65 percent, in which case you’re back to zero. I’ve been on it since 2018, and I now use a wheelchair. Prior to 2024, I used a Rollator (walker). And prior to 2022, I used a cane. And prior to 2018, I just had an AFO (ankle-foot orthotic, or brace). It didn’t help that my father died of cancer in 2018, after surviving for six extra years on a drug trial that boosted B-cell production. When he died, I went off of Ocrevus, since it reduced B-cell production. I didn’t have cancer, but it made sense to me at the time.

In any case, I went back on at the end of 2019, just in time for COVID to hit and make having no long-term immune system EVEN SCARIER. Then I switched to Kesimpta, because I wouldn’t have to leave my house to take it, but I hated the shots, so I went BACK to Ocrevus, and now here we are. I’m in a wheelchair, the neurologist who got me back onto Ocrevus in 2019 (because he had MS too, and was on it, too!) is dead from complications from COVID (no joke), and infusion days are fraught.

Perhaps unsurprisingly, these days are generally a wash. I sit in a recliner with an IV (the only person who has successfully gotten an IV into my arm every single time without fail is Jason, the infusion guy at my doctor, and for that reason alone I will always love him) and I pack air-pods but really I just want to talk to other infusers. They don’t always want to talk to me, though, so I read my phone and make small talk with the technicians and try not to have to pee since, see above, my legs are pretty useless after a few hours of sitting. It’s low-key and easy but it does make for a drowsy time, not least because they give you Benadryl to prevent any allergic reaction, and Benadryl puts me to sleep.

After my allotted time, I went to sit in the sun and wait for Super Spouse to come pick me up (literally, because I was mostly legless and so needed help getting up and down). Because it is spring in New England, sitting in the sun still didn’t break 60 degrees, so I was all good for the retirement reception and then the dinner out afterward. My legs even started to come back a little by the end of the evening, so Michael didn’t have to help me in the bathroom. (WIN!) So, I weathered infusion day okay. But then there have been some broken nights (Rocky had to go outside in the wee hours), and then lunch out with friends on Friday and dinner at new friends on Saturday, and then it was Mother’s Day and now I’m sort of tired.

More to come, but in the meantime, I have been watching this nonstop since yesterday. It makes me happy. And hopeful. Here is a country emerging from sixteen years of fascism. And they’re dancing. You’re welcome.

In my last Substack, I wrote about having a bad day, and how that was partly because my body was on a tear, and nothing was working, especially not my legs. (And here’s a thing: Legs are really heavy when the muscles in them aren’t working. Super heavy.) I had actually intended for that post to be a sort of, “My world sucked for a minute but now it’s better.” But I think it came off a bit more depressed and suicide-adjacent than I intended. Or felt. Sorry about that.

But this very cool thing happened, which is that a bunch of my readers and friends and family reached out, either in the comments or by email or even calling me, which I am old enough to appreciate. And while it’s true that a lot of the messages started with variations on “Are you OK?” (which made me feel a little guilty, truth be told), they resulted in invitations out, or phone calls (one from Germany!), or visits (from my oldest friend, whom I’ve been friends with since I was 13, which is more than 30 years, which is insane because I swear I’m only 30. Aren’t I?)

Anyway, I am grateful for everyone who reached out when I was feeling a bit bleak, and helping me—if only by reading this newsletter!—face living with a chronic illness that I thought I understood but I keep finding I do not. I was feeling this particularly earlier this week, when I read ’s post about friendship, which I highly recommend. Not because I worry, but because I see how lucky I am to know the people I know, and so that you can see what it is we, all of us with chronic illness, need and are grateful for.

the veil

Please Don’t Abandon Your Disabled Friends

Content note: Reflections on chronic illness, being believed, and the emotional weight of friendship and abandonment…

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2 months ago · 129 likes · 51 comments · vōx

On another note: I have realized over the last few weeks that I sometimes flounder. In the interest of finding life preservers, I am going to start a bit of a deep dive into Primary Progressive MS in the next couple of posts, not least because PPMS is so different than RRMS, which I know a bit more about and which all my fellow MSers seem to have. The chronic illness and MS communities are so lovely and supportive and useful. And yet. And yet I sometimes find myself seeking commiseration and instead getting jealous reading Substacks by folks who have bad days, but then can recover enough to, say, hike. Because I have a bad day and if I recover it’s just to again be able to stand up from my bed and fall into the wheelchair. And I get jealous and nostalgic for when I was stronger (but wasted time thinking THAT was the worst) and start wondering if maybe I SHOULD take mushroom tincture and stop eating bread and grains again and force myself to try chair yoga and the spiraling, oh, the spiraling! (That sounds better when it’s pudding.)

I think I need to remind myself of (and force you all to read about) what PPMS actually is. Because of course I have a rare form of a confusing disease. And of course it doesn’t respond to medication, because the current meds only work 30 percent of the time with PPMS anyway. And of course I have thought about stem-cell replacement therapy and CAR-T therapy, but the former requires chemo and two months in isolation and the latter is only available in trials that aren’t open to me.

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One of the questions I got a lot in the last couple of weeks was whether I might turn this series of reflections into a book. I don’t know (is the short answer). If I do, I should include some info and ideas that aren’t just mine (is the longer answer). I’m curious whether a deeper dive would hold my interest, to say nothing of yours, for more than a week or two. If so, maybe this is someday a book! If not, I’ll revert to regaling you with stories of my adventures. Either way, it’s win-win!

And I won’t have to take mushroom tincture.

In the meantime, here is a picture of Rocky, who courageously and clumsily clambered onto this bridge, then froze in fear when he realized there were big gaps between the slats. Something relevant in that?

But what is a bad day? I mean, beyond the whole shitty day thing.

When you have a chronic illness, especially one with physical disabilities attached to it, bad days are this weird phenomenon where you might wake up feeling pretty good emotionally, and then discover that you cannot stand up out of bed. Or that you can’t, for the life of yourself, remember what it was your body was supposed to do when thinking about food. (Get hungry? Eat? Something like that. . .) Or that, once in the shower, you don’t have the strength to rub the shampoo into your hair, let alone wash it back out again. And then your pretty-good feeling gets darker and more frustrated, and then you find yourself saying things to your spouse like, “It’s so hard to live trapped in a body that doesn’t work,” and he worries because that sounds despairing. Or you mention that exchange to your mom and she begins to fret that she should move down to your state like, yesterday, to make sure you don’t kill yourself. (Though ironically, in telling my mother about the bad day, I felt much better. Maybe because I sloughed off my frustration onto her. Thanks mom!)

I even wrote a depressed Note and my lovely readers and followers responded and I did feel a bit more spring-like. I also slept, which it turns out is a thing that helps. Who knew? And as a result, I’ve started being able to love the fact that the days are longer and longer, the trees are popping out in full bloom, and it’s inching up in terms of temperature (though not crazy, all the way up to 50 degrees F, yay!).

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OH! And we went to Texas! Because of course we did. Our nephew got married in a lovely tiny ceremony, at a bonsai garden. The guy working there was a trip—I needed a bathroom, and our other nephew was helping me find it. We thought we did—there was a room labeled TOILET, and I went in. And oh good lord. The toilet seat looked like it had a skin disease and the bowl was brown and mottled and horrifying. Now, I am a person who will pee anywhere. I will always use a toilet if it is available, because who knows when you might get another chance? And even I thought, ummm. So I went back out, thinking I would just wet myself if I must, at which point the guy came up and exclaimed about how “Oh my God, that’s NOT the bathroom! Don’t use that one!” An he showed me to the actual usable bathroom, which was totally fine. Thankfully. Because I really didn’t want to wet myself at a wedding.

So we got back from Texas and I had a couple of bad days and began worrying that maybe this is the next step in my disability, which has seemed to just be getting worse, inexorably, regardless of what I do. (Yes, I’ve tried the diets and the exercise and the physio/PT and the acupuncture and the UV light and and and). Then I scared everyone into worrying that I might off myself, though honestly I could never if only because I have railed publicly about the bullshit idea that disabled people must want to kill themselves rather than live using a wheelchair, and fuck if I’m going to give anyone the pleasure of thinking I was wrong. Because I am never wrong.

And then I got some actual sleep. And I started having good days again. Days where I was able to work out, even. And go out to dinner and to the local winery. Days where Michael could take the dog for a walk without fretting that I might be stuck in the shower for an hour while he’s gone. Days where I looked up and thought, Oh shit, I need to write a newsletter!

So here you go. It’s beautiful outside, and we are going later to a concert given by one of Michael’s colleagues, who composes post-modernist music. And this morning Michael gave Rocky a bath, which was both desperately needed (all his white parts had turned gray) and ridiculously funny, as he zoomed around afterward trying to get dry. These are the kinds of things I wouldn’t want to miss. So I’m going to stick around for a while longer. Bad days be damned.

In any case, that meant that I did not write about our trip down to D.C. for my oldest step-daughter’s baby shower, which was lovely and interesting and gave me a chance to talk with the family of my husband’s first wife, which obviously I rarely do. It also meant trying to figure out how to use the bathroom in their home, which has only one bathroom at the top of the stairs. Which means Super Spouse had to emerge and piggyback me partly up said stairs. But the trip was quite short and generally uneventful, and honestly the best part was that TSA wasn’t nearly as awful as it could have been, especially since I always need to wait for a pat-down. I waited about ten minutes that time, not short but way better than I feared, especially as TSA isn’t being paid right now. Ugh. Also, the pat-down women were lovely. So there you go.

Back home, though, spring was/is making its slow way forward, and for New Englanders, that means sugar shacks. Sugar shacks are the breakfast restaurants (though that term is pretty loose—sometimes it’s basically some tables and unlimited Eggos) that maple syrup farms open up between late February and the end of March/Easter. Why that time? Because the point is to showcase the product and get folks excited about the new batch—which will be made from the sap currently running. But sap only runs when it gets above freezing during the day and then drops below freezing at night. So basically March, if you live in the northeast.

We went to Davenport Maple Farm, mostly because we were chatting with the owner at the Winter Farmers’ Market and she mentioned that they had hired the cook from my PREVIOUS favorite sugar shack, which closed permanently during COVID. I am not a sweet breakfast person and I don’t like Belgian waffles, but this cook makes non-Belgian waffles and sugar-shacking is just an excuse to eat ALL the syrup, so we went and I ate two enormous plate-size waffles drowned in syrup and was so happy, (I also happily, silently judged the woman sitting next to me, who got a SALAD. After the typical two-hour wait to be seated! At a sugar shack! A SALAD! Whyyyy?)

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I want to mention that if you are ever in western Massachusetts during sugaring season, and you need a place that is accessible, go here. Many sugar shacks are not very accessible, since they’re generally a big room on the farm that they have repurposed for dining for a month. But Davenport was step-free to get in, and you can pull right up to (though not park at) the door. And there are TWO accessible bathrooms! This is not the typical surprise you get when you need an accessible place in the middle of nowhere.

I had a different but also oddly interesting encounter later last week, when on a whim I called about an apartment for sale in Paris. Do I have the money for such a thing? No, I do not. But I got this email about listings and the apartment in question was in the 7th arrondissement, which is near the Eiffel Tower on the Right bank, and oh my, it was so beautiful from the pictures. Those tall windows, in an 18th-century building, and there was elevator! And it was only 600,000 euros, which ok, yes, is a stupid amount of money but far less than a million euros. So, you know, a deal! In any case, I didn’t really think that the owner would call me but she did, and sent me a little movie of the place. And I asked her about the elevator and mentioned that I use a wheelchair. And she apologetically said that the elevator wouldn’t fit a wheelchair, which she knows because she uses one! Because she has secondary progressive MS! And honestly I just wanted to buy it from her right then, but you really can’t put an apartment on a credit card and also, as she gently pointed out, people like us really should be looking for living quarters that make life easier, not harder.

Ach, FINE, whatever. I didn’t want to live in Paris anyway.

Okay, I did. I do. Shut up.

But that brings me to one place I do not want to live, which is Temecula, California, during a record heat wave. We were visiting another daughter, and it was almost 100 degrees every day. A dry heat, but that means that in the shade it cooled down to 89. It was rough for me as a heat-sensitive person with body temperature disregulation (meaning I don’t really sweat to cool off, or shiver to get warm). It was a tough trip, staring with our arrival in San Diego, which was pretty temperate, but the Hilton Garden Inn had given away the accessible room Michael reserved four weeks prior. What that really meant was that I had no real way to get up from the super-low toilet, let alone take a shower. When we complained (politely, mildly), the woman at the desk said, “I know, we don’t have enough rooms like that, sorry.” Which yes, we know, that’s why we reserved one FOUR WEEKS AGO. That is what “reserve” actually means—you call dibs on a commodity because it is in short supply. If a reservation is just given away, then WHAT THE FUCK IS THE POINT?

A bright spot of San Diego, however, was Balboa Park, where (among other things) we went to an art museum and saw 18-century paintings. Featuring cavalier King Charles spaniels! Like Rocky! That was pretty great and almost made up for the fact that the more contemporary art museums were closed that day.

Luckily we were only in San Diego for one night, and I called ahead to the Temecula Hampton Inn, where we would be spending three nights, and confirmed that our reservation for an accessible room still held. It did. Thank god. Temecula is southern California’s wine country, so we did what we do best, and went to a couple wineries. It was great, but here’s the thing: even in the shade, even with the breeze, and the misters on, and going into air conditioning, it was too hot for me. But because I use a wheelchair and don’t have to stand up, I often overestimate what my body can stand. I KNEW it was too hot, I did, but I didn’t have to move so it was okay, right?

Nope! Because if you are like me, then you actually do need to stand very occasionally, like when you use a public bathroom. Or when you are transferring to the car. Or if you want to think straight and not fall asleep because your systems are shutting down. I had a rough time and ultimately needed to recover in my stepdaughter’s full-blasting AC while she and Michael laid out by the pool. It did a number on my stomach, too, and I will tell you, having an upset stomach at two in the morning, when you don’t walk great, sucks.

The upshot is that Michael and I had a serious talk about travel and how hard it can be on both of us, even with the chair. I think we’re going to slow down a bit. I hate that, honestly, since travel is another key part of my identity that MS is taking away. I don’t want to give in to that. But I don’t know how realistic it is to hope for the best and rely on an older Super Spouse to just lift me up from the floor when I fall. I envisioned us traveling when the girls were grown and we had more free time and money. I didn’t envision the disability progressing the way it has. It feels deeply unfair and incredibly frustrating.

Thank god there was so much wine.

But this weekend got away from me. We went to a (remarkably accessible) sugar shack, and saw all the Oscar-nominated short films and most of the long ones. And I stayed up late to do that and then to watch the Oscars proper, and I’m struggling a bit now.

I feel bleak. The world is so awful right now. I’m really tired. And I have cramps.

So I’ll write this coming weekend about our trip last week to attend the oldest daughter’s baby shower. And our trip this week to Southern California to visit another daughter. But tonight I’m going to snuggle into my fleece and wrap myself up in blankets and watch Mad Men.

Thanks for hanging in with me.

I have not been traveling and have mostly been having a difficult time with little tasks, like standing up from the toilet, which leaves me little to want to write about. (I mean, I could tell you about how my legs are generally weak in the mornings, and that it takes several minutes for them to come back online and so I sit on the toilet for ten minutes, just trying to psych my legs up to functioning and there you go. I’m already bored and frankly mildly embarrassed.) Though I do feel it imperative to point out that at this time last year, we were in Oxford, England, and it was already spring. See above. The flowers were out and blooming, and it actually made sense that March 1, being St. David’s Day, celebrates daffodils. Meanwhile, this year, we are in Massachusetts, which three days ago went through a Snowmageddon and looked like the snowy picture above (taken on February 25). And we’re supposed to get more snow this week. Argh. I keep repeating to myself, Spring is coming. But it’s hard to believe.

As a result, I don’t have much to write about personally, but I did spend the snow days reading and engaging some things that I want to share. So hunker down with me and wait out the cold in front the fire, and check these out.

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First, in my ongoing quest to find representation that’s not just metaphorical zombie-portrayals, I really liked Kelly Mack’s roundup of disabled people onscreen who aren’t just inspiring. Who are even occasionally dicks. It made me want to go back and rewatch There’s Something About Mary, which I have honestly never before felt the urge to do. And reminded me of my frustration that series (season) two of We Might Regret This is out in the UK but only available on BBC 2, which is only available in the UK. (NOTE: If someone can explain to me how to get/use a VPN that will convince BBC 2 that I’m currently in the UK, I will love you forever and maybe even send you a marshmallow present. Which is the best kind of present.)

Rolling With It

News Comment: Disabled Rule Breakers

Image Description: Danny Murphy and Ben Stiller in “Something About Mary.” Murphy sits in a motorized wheelchair on a street while Stiller stands in front of him with a large dresser strapped to his back. (Photo from the TMZ website…

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4 months ago · 11 likes · 6 comments · Kelly Mack

I also, in my rabbit-hole descension of the last snow day, discovered My Gimpy Life, which appears to have run its course but the extant episodes on YouTube are pretty great. I especially related to “Crowded,” as you will appreciate if you’ve read my Stack for any length of time.

All of this was partly prompted, of course, by the BAFTA awards incident, in which John Davidson, a man who lives with Tourettes’s (and was the inspiration for and writer of the award-winning movie I Swear), involuntarily shouted out the n-word at Michael B. Jordan and Delroy Lindo as they went onstage. BAFTA and the BBC handled this (live-but-delayed-and-therefore-editable) confluence of disability and race spectacularly badly, leaving everyone feeling like shit and capping things off with the normally-lovely Alan Cumming apologizing “if you were offended.” Alan, NO. Apologies that include the word “if” are NOT APOLOGIES. I am usually wholly on Team Disability, but this essay below made so much sense and a fantastic point. Which is, ultimately, yes the disability is real but that doesn’t mean you can’t apologize when (not if) it causes harm to others, too. Even if unintentional. Maybe especially if unintentional.

Ijeoma Oluo: Behind the Book

Racism, Ableism, and the Burden That Kills

I’ve been called racial slurs by people who likely had Tourette Syndrome a few times in my life. It may seem wild when only about 1% of the population has Tourette Syndrome and only a small percentage of those have vocal tics that can cause them to yell out profanities and slurs. But I’m a Black woman in a majority white area and if…

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4 months ago · 857 likes · 6 comments · Ijeoma Oluo

And that sent me down a political path, which is not ideal in this moment, as my country is still attacking its inhabitants and now has started an unprovoked war in the Middle East (remind me: how successfully does that tend to go for us?). In any case, Michael has written about this very thing this very moment—the starting a war thing—much better than I.

Makings of the Sun

Low, Dishonest

I never really understood why, on or about September 12, 2001, so many people started to circulate Auden’s “September 1, 1939.” I mean, I got the sense that they felt that something had ended, that something, perhaps worse, was starting. But the poem seemed (still seems, to me) not really to speak to the experience of the moment. Sure, there were the re…

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4 months ago · Michael Thurston

He also triggered my final piece of bingeing, which I will share with you and which kind of brings this post full-circle. Michael casually mentioned that, on the podcast, Past Present Future, host David Runciman spoke with political theorist, Paul Sagar. Sagar is a professor at King’s College London. He is also the author of the Substack Diary of a Punter, in which he writes about surviving and now living with a severe spinal cord injury. An avid rock-climber, Sagar fell and broke his neck in summer 2023; he’s been writing about it ever since, and I cannot stop reading him. Not least because he’s a great writer, but also because my disability is caused by spinal cord injuries (though not externally inflicted), and because what he writes is both painfully honest and also has moments of real depth and beauty. I’ve been ruminating on a very early post he made, wherein he thinks about the daily humiliations of severe disability and the juxtaposition of that with intimacy. “If humiliation is having to be at your most vulnerable in front of strangers and feel swamped with shame, then intimacy is the capacity to be totally open and vulnerable with another person that you know and trust and instead feel safe, loved and affirmed by. Indeed intimacy is the real hallmark of being loved and in love.” I just. I can’t. It’s exactly right.

Diary of a Punter

Humiliation and intimacy

Warning that this post contains some heavy material, emotionally and descriptively…

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3 years ago · 42 likes · 7 comments · Paul S

The full-circle-ness of it all is that, while I am highlighting his writing about his disability, his podcast appearance makes no mention of that, and engages Sagar in his professional capacity as a published expert and academic. Which I fear means that I am being one of those people I hate. Goddammit. Read it anyway.

It’s Valentine’s Day! Okay, actually yesterday was Valentine’s Day! I usually don’t really care about Valentine’s Day—when I was little it was an onerous responsibility (having to get cards for everyone in my class) coupled with crushing dejection when whatever crush I had didn’t seem to recognize how special I was. Then it was an opportunity for boys I did not like to buy me flowers, while whatever crush I had STILL didn’t seem to recognize how special I was. Then I met Michael, when I had just graduated and moved to the city, and we occasionally wrote each other long-distance love poems, but otherwise laughed V-Day off, and it became mostly a time when my dad sent me flowers. But then he died (my dad, not Michael) and V-Day became a time to give the daughters candy. If we remembered. Once I’d been sick for a few years, we started to celebrate in little ways, going out to dinner, buying little gifts or maybe a couples massage. And so here we are.

Angela's Substack

Still Standing—Because of Him

Dedication…

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4 months ago · 15 likes · 9 comments · You Don't Look Sick, Ang

This year I’ve been thinking about my Valentine a lot, not least because I read a lovely tribute to ANOTHER spouse, written by another MS-er, and it struck me as both true and an easy way to get out of buying Michael a present. (I kid! I let him buy me dinner at our favorite restaurant last night!) Also, I write a lot about Michael being Super Spouse and what that really means is that he is my caretaker, and that shift has been . . . something I wrestle with it constantly. Ugh, CONSTANTLY. (What is that from? I have this random memory of saying, “Constantly. Ugh CONSTANTLY,” about things and I know I was riffing on something but I cannot for the life of me remember what. Oh well.) We’re watching THE PITT right now and just finished an episode where the caretaker of a patient has disappeared, out of exhaustion and fright. I understand a bit of what helping me can entail, and I want to acknowledge it.

So anyway. Where was I? Oh right, my valentine for my Valentine. When I am overwhelmed by feee-fees (as the kids say), I tend to default to lists. (At my father’s funeral, my sister and brother wrote really heartfelt eulogies to read out. I wrote a Top Ten Things My Dad Taught Me list. Number 2 was “There’s no such thing as a funny racist joke.” TRUE!)

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Okay, without further ado, here is my list of Five . . . hmm. Five Traits? Identities? Roles? that make my life so much better than I ever dared hope when I was first diagnosed. Here we go.

5. Super Spouse. It is easy to say that your spouse or love or partner is a super hero, but I have been amazed by how, as my physical needs grow ever larger, so does his capacity to meet that need. Carrying all the luggage and my wheelchair and me. Finding help when I need it. Flagging down transportation. Driving me all over creation for hours to get to the doctor/rehab/body work. Picking me up when I fall down again and again and again.
   
   

4. Caregiver. Sure, this might be conflated with Super Spouse, but there are so many everyday things that a caretaker does that go beyond just being a good partner but aren’t as remarkable as being a superhero. Making dinner every night. Letting me sleep in each morning and bringing me coffee so I don’t have to fight to carry it and wheel my chair while stiff from sleep. Going grocery shopping and carrying the laundry baskets and getting up to house-train the puppy and taking my dishes to the sink when I’m done eating and buying me a sexy shower chair so I don’t fall down and picking me up again when I do fall down. Absorbing all the ways that I have morphed from full partner to occasional burden and never making me feel bad.
   
   

3. Writer. Letting me read work that has not yet been seen by anyone else, and asking me to edit it. Trusting that my editing skills have not diminished as my disease has progressed, and making it possible for me to believe it, too. Reading my writing before I send it out into the world, and helping me present my best self in the genres I choose to explore. Writing poetry that reminds me of why I like poetry, and also occasionally writing love poems for me, especially ones that don’t ignore my spastic legs.
   

   Makings of the Sun

   And Now for Something (Not So) Completely Different

   A break, Gentle Reader, from appreciative essays on the work of individual poets. Preview of coming attractions: reviews of new books by poets I’ve written about here before (Karen Solie, Emily Wilson). But in the meantime, herewith, some thoughts about . . . friction…

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   5 months ago · 3 likes · Michael Thurston

2. Explorer. I have spent the last 18 months—more!—traveling the world in a damn wheelchair and I couldn’t have done it without a partner who looks at what we’re facing and says, basically, Bring it. When we were preparing for Antarctica, I was scared. I started off nervous and then, after the phone calls from the medical director, wherein he all but asked me directly, Are you out of your goddamned mind? I was full-on freaked out. And it really was too late to turn back, to pull out, but I turned to Michael and said, “I think I can’t do this, go without me.” And he looked at me and said, “It’s going to be hard but we’re doing it together. This is us traveling. We will figure it out and make it work.” This attitude has made me as close to fearless as I can get while seated; it reminds me of who I used to be, and suggests maybe I haven’t changed that much. It makes me want to do everything because I’m not doing it alone.
   
   

   1.Boyfriend. I mean, okay, Michael hasn’t been my boyfriend for almost 13 years, but lover sounds ooky and husband sounds too staid. I’m talking about when you’re crazy about the other person and you keep trying to tell them they’re cute or pinch their ass (hard when that person is in a wheelchair) and otherwise get the other person to know that you’re excited to see them and they’re your lobster (to quote Phoebe from Friends). I lurch around or, more often these days, wheel around and crash into things. I drown in big sweaters that were super cute when I wore them over skinny jeans bur now just look slouchy and shapeless in the chair. I sometimes don’t have the spoons to even think about a shower, let alone actually take one. And when I do, I use a sexy shower chair with arms on it. But he still wolf-whistles when I come into a room, and watches appreciatively as I get ready for bed, and who knew being objectified could mean feeling loved absolutely?

There you go. Here’s my valentine to my Valentine. Thank you for indulging me. Next week I’ll get back to raging about the rest of the machine.

I have been trying to figure out how to keep writing this newsletter and to stay relatively outside of the political moment, while living in this political moment. I grew up in the D.C. suburbs; “wonky” is my middle name. (Well, actually, it’s Susan but don’t get distracted.) And I’ve kept my wonkiness fairly well-controlled, I think, sparing you all my thoughts about various issues and politicians (though I do suspect you can read between the lines).

But shit has gotten real in the last month in a way that transcends wonk and goes right to the heart of politics in the most basic Greek etymology of the word: “of, for, or relating to citizens.” (Thanks, Google AI!) And watching what’s happening from my relatively safe blue state, from my relatively safe privileged neighborhood, from my relatively safe house-on-a-hill, I find myself wracked with fear and guilt and despondency about what is being done to the citizens of this country. And we can argue about what “citizen” even means (I won’t, because fuck that noise), but even if you want to hew to the most basic language of our Constitution, that term includes all who have been born here, and all who have been naturalized. And if those citizens are children, then obviously we need their parents to remain safe as well, unless we’re planning to suddenly overhaul and expand the foster-care and adoption services of this country?

And yet. And yet people, citizens and those on their way to becoming citizens and those who are parents of citizens, are being attacked and disappeared and beaten and killed, and there’s an alarming trend among those who used to insist that the government was coming to kill you and now, well, want the government to come kill you. (Paul Waldman talks about this way better than I.)

The Cross Section

What Happened to the "Don't Tread On Me" Conservatives?

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5 months ago · 205 likes · 35 comments · Paul Waldman

And I am still afraid for those like me, in wheelchairs and walkers and using canes or assistive devices, I can’t even get into the eugenics of RFK Jr, and what if what I write here is absolutely frivolous and tone-deaf and isn’t helping anything or anyone? And people are dying. Or more accurately, people are being killed.

So yesterday I did the only thing I could think to do when faced with a horrifying reality. I went to a horror movie.

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28 Years Later: The Bone Temple, to be exact. You may recall that I have written about Danny Boyle and Alex Garland’s horror-trilogy before (Bone Temple is the second—I wrote about the first). About my conflicted feelings regarding the evolution of zombies from the undead to the merely sickened, about the uncomfortable but interesting ways that these writers and directors deal with sick bodies in contemporary zombie films and TV shows (hint; usually by killing them).

I was curious, though, because as I noted before, 28 Years Later has an interesting twist in the form of Ralph Fiennes, aka Dr. Ian Kelson, who I read as enacting an alternative reality in the first movie: Painting himself in iodine because it kills the virus (and maybe also dissuades the infected without him having to kill them?); building a memento mori temple for the dead, rather than forgetting them as weak victims who should have run faster (or privileging his own survival over their memories). Things get even more interesting in this second chapter, directed by an American woman (Nia DeCosta), which I want to think through here with LOTS OF SPOILERS. Because while this is not the most important thing happening last week or last month, I do think that pop culture influences the way we see the world and frankly, reimagining sickness and disability in a major movie is important. Especially now.

The Bone Temple is most likely the scariest of the three movies, and there are definitely some horrifying things. Weirdly, though, the scariest things are enacted by humans, not the infected zombies. (Well, okay, there is an early scene where a zombie rips the head and spine off/out of a human, but mostly it’s people who do the worst things to other people.) The boy from the first film, Spike, is rescued/kidnapped by a roving band of cultists who follow Lord Sir Jimmy Crystal, a vicious and deranged leader of a band of seven followers who all look like him (well, they wear ratty wigs to look like him and call themselves the Jimmies). Spike is quickly plunged into horror—forced to fight for his life on first entering the cult—which continues when the group home-invades a survivors’ compound and sets about skinning their captives alive. Like I said, gruesome stuff. (Full disclosure: I might have looked away during this part.)

With that, a bonkers reality is established: Survival is reliant on being part of this group, but the way to remain part of this group is to perform horrific and murderous acts upon the very people who ostensibly you’d hope would outlast and outnumber the zombies. There are a lot of political undertones in this movie, not least the failure of the church to have saved Lord Sir Jimmy twenty-eight years ago (with the result that he has now turned explicitly to satanism, though it’s also clear that he is using the specter of Satan to frighten his followers into remaining). And those followers cling to something unseen to protect them from infection and the infected—even if the thing unseen is mediated through a charlatan with bad hair who makes you act in ways that jeopardize everyone. In a moment of anti-vax, anti-science approaches to public health, this seems awfully relevant.

The reality of the Jimmies becomes even more stark when Dr. Kelson reappears. A former doctor (he even makes a joke about the NHS!), he has already established his interest in rehabilitating and perhaps even curing the infected. If nothing else, he has learned to live among them and begins to try to find connection and humanity in one infected zombie. He iodines up, which I still think is a nod to masking in real life, a way for him to be among the infected but not sickened or killed. And he observes, researches (the bunker in which he lives has several shelves of medical texts), and attempts cures rooted in science. His interaction with the Jimmies brings this to the fore, most pointedly when he sees that Spike—whom he clearly believes is the future of mankind—is trapped among them and unable to save himself. Kelson suggests a way to live with infected people—and make their lives better!—while also helping able-bodied humanity survive without becoming monstrous.

And Ralph Fiennes does it all to a soundtrack of Duran Duran and Iron Maiden. Which is pretty fucking great.

It’s a strange feeling to go to a horror movie and find the monsters less terrifying than the people. I mean, this is a staple of some horror movies: Frankenstein famously asks who the real monster is. But this weekend, I found myself comparing the zombies to real-life people on the ground in the U.S. People who are threatening and killing citizens in their zeal to protect(?) them from non-citizens. And more broadly, people who are so frightened of a possible future chronic illness that they follow a leader who puts them at immediate risk of a deadly virus. It’s weird to leave a scary movie less sure of the monster than when you walked in. Especially if you suspect that in the real world, you might be the monster everyone is trying to kill. Whether it’s because you have a disability or just an ethical core.

So there you go. I hope I haven’t actually ruined this movie for you, because I really do think you should go see it (if you can stomach some awfulness). It’s really good. When we walked out, Michael said he wanted to turn right around and go back in to see it again. I can’t stop thinking about it, which has been a welcome relief from everything else that I’ve been thinking about. If you do see it, let me know in the comments. I’m curious what you think.

I think I’m recovered from Antarctica, and it only took a month and a half. But honestly? The continent IS a metaphor for inhospitable, so I actually kind of do think that a month and a half is reasonable. Plus I’ve spent much of the first half of January laying low and recovering and trying not to tax myself too much and it’s been working. I mean, I did go to Toronto last weekend, but at this point, that barely counts as travel. A two-hour plane ride? Pshaw.

I will say that last weekend was a hard time to be from the US, and I was grateful to be heading to Canada, if only for a weekend. And though the trip was much easier than some of our recent travel, it was a two-hour plane ride. So I didn’t argue when I got to the door of the plane and—having assured the flight attendant that I could lurch down the aisle to my seat—said attendant took one look at me and Michael and said, “The plane is half full. Why don’t you sit here?” and indicated a seat in business class. Then he proceeded to treat us like we had actually bought business class tickets! Offering us wine and free charcuterie and telling me at one point, “Ask for whatever you want to drink, because you’re in business class!” It was great.

Actually the whole Air Canada experience was great on the way out, and mostly great on the way back (more about that in a sec). Not least because when you gate-check your wheelchair, they take a picture of it on the jetway. And then they send you an email confirming that they’ve put it in the luggage hold of the plane. And another when it is taken out and is heading to you on the jetway! It was reassuring.

We were in Toronto for a conference, which is to say that Michael was conferencing and I was mostly writing and rewriting the story I was going to tell at the DISCO Storyteller’s event that was happening the day after we got back. I mostly cannibalized from my earlier Substack posts, wherein I first learned how tricky travel in a wheelchair can be. And of course I had posted on here about the event so the audience was full of people who had already read what I was saying. Efficiency!

But first, Toronto. What a great city. We stayed at a nice hotel with an accessible room. (Honestly, it was almost too accessible for me—there was a huge disability toilet seat perched on top of the regular toilet, which I did try out because, you know, high seats are helpful for standing back up. But my feet didn’t even touch the floor while I was on it, and this is weird for me and I was too distracted to actually pee. So we took the seat off and hid it behind the trash can. As you do.) The shower had those wall-mounted shampoo and conditioner dispensers, but they had TWO SETS—one high up and one level with wIth shower seat. Reachability is always my pet peeve, so Yay!

It was sunny and cold, and we tromped around a bit, and went to the Saint Lawrence indoor market where we ate what I think of as a Toronto delicacy: peameal bacon sandwiches. Peameal bacon is what I would call Canadian bacon, though I guess if you are Canadian that’s redundant? In any case, it’s really good with mustard and hot sauce or marmalade, as the waitress told us. Then we bought macarons to take back to the room, because even though I did eat a sandwich, I’m trying to cut back on gluten, and as we all know, macarons are made with almond flour, which means I can eat as many as I want.

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We also, as is our wont, went out to a couple of fancy dinners. The first place was really good, and they had a ramp that they put out for me to get in over the step at the door, and we were seated on the main floor rather than up the stirs. And the food was great. I was very entertained by the couple next to us, who appeared to be on a first or second date, though I will say that I am not sure I would have tipsily told my first or second date about my recent breakup with the father of my children, which seemed to involve spying on him? I think? Or that I was once a member of a fight club, which resulted in a large, sweaty man lying unconscious on top of me, as the male date recounted. I really was trying not to eavesdrop, but it was hard because they were seated close to us, so I did keep fighting the urge to whisper, Maybe don’t say that part out loud yet to them. But then again, they seemed to be having fun or at least a lot to drink, and I haven’t been single in a long time, so what do I know?

The only bummer was that the bathrooms were up a flight of stairs, but I was told that there was an accessible bathroom in the lobby of the building that housed the restaurant. Which fine, cool, I’ve seen that before. Except it turns out, the lobby door was outside of the restaurant and around the block, and the bathroom wasn’t actually accessible so much as it was just big enough for a wheelchair. After banging on the lobby door for two minutes so the security guard would let us in (umm. . .), the bathroom didn’t have grab bars, and the sink wasn’t reachable. So that was not super ideal.

What was super ideal, though, was Restaurant Lucie, where we went the next night. I was excited because it’s Michelin-recommended, and I am a sucker for fancy things. BUT MORE THAN THAT! We got in and the space was big and had room for my wheelchair, but felt cozy and dark and small. The wait staff were completely unfazed by the chair and gave us a sweet little table that worked perfectly. I think the Michelin-ness means they take really good care of you, because we were visited by the host, the chef, the owner, the waiter, and the sommelier. I told the owner that I appreciated how accessible the restaurant was, and he told me that he had specifically wanted this space to work for everyone. Even the bathroom was not only accessible in all the usual ways, but the door opened by pushing a button, and locked by pushing another button on the inside wall. It was great. And the food was gobsmackingly good. Also as we were waiting for a cab to leave, the host told me that he’s friends with the Property Brothers guys, and if I move to Canada, I should let him know so they could outfit my home with accessible stuff. Win!

Air Canada wasn’t quite as cool on the way back, though they did still provide email proof of my chair in luggage AND we had the same flight attendant! Darren,with whom we are now great friends, of course. This time, Air Canada had changed the plane to a smaller one with no business class (boo), which boarded from the tarmac (double-boo). The gate attendants insisted that my chair couldn’t make it up the ramp to the plane (it totally could have; we’ve done it before) and so we had to wait for folks to come transport me in an aisle chair up to the plane. Which fine, whatever, except then they told us that they weren’t sure the guys would come before takeoff. Wait, what? Obviously we were getting on that plane, guys or no guys (I could see Super Spouse rearing his head), but thankfully they did arrive in time and I got onto the plane. And then we were back home.

Just in time for the DISCO Storytelling event, the theme of which was “Accessibility.” My friend Andrew had connected me to the host, and I was very excited to perform. It was my first time doing such a thing, so I practiced a LOT. I was pretty damn good, if I do say so myself. I reworked the Stack pieces so that I was presenting a legit story with a shape and everything, and the practice paid off: I could do it without notes (very TED Talk!), and felt the audience responding favorably. Which was important because I invited basically all of my friends to come watch, and there is nothing worse than embarrassing yourself in front of people you love. Not least because they’ll probably try to reassure you unconvincingly that No, no, you were . . . great . . . really. But no fear, I actually was great! Or at least, you know, decent and not-embarrassing. There’s no video, sorry, but I’m hoping to be invited to do it again. I’ll keep you posted.

And Rocky stayed with a new dogsitter who is also his groomer, and it went swimmingly. She took a picture and hopefully it , too, will make you smile. Here it is:

Man what a hell of a year it’s been. But hey! It’s a new year. Christmas is over, mine was lovely, thanks. New Year’s Eve is over, too, and again, ours was great—a couple of friends over for dinner, everyone home by 9. Because we’re too old for that amateur shit. And now we’re a few days in. I started this thinking I would talk frustrations and loves and resolutions, but I think instead I’m just going to give you a list. “A list of what?” you may ask. I don’t know, just a list. Stop asking me questions! Don’t you like lists? I know I do.

Also some things I think you should read. Because reasons. This will be part of my list.

1. On Resolutions. I’ve made a couple of resolutions, more about them below, but I really liked ’s post encouraging setting FUN, rather than SMART, goals. Mostly I’m trying to follow her advice, not least because I find resolutions help me put the old year behind me, and Jesus H., what a hell of a year it was. And given that, I need those resolutions to follow the Flexible, Uplifting, Numberless model rather than whatever business-marketing-wellness bullshit SMART embraces. Read here and free yourself from influencer-anxiety!

Words I Wheel By

SMART goals are not the 2026 vibe. Here's to FUN goals instead.

First, happy new year! I know “happy” may be a loaded word, so really, what I mean to say is: I hope the start of 2026 finds you taking good care, and that the year ahead will be kind to you. I’m so grateful you’re reading this. And if it resonates, it would mean the world if you…

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6 months ago · 53 likes · 14 comments · Emily Ladau

2. Pet Peeve of 2025 that Appears to Be On-Track for 2026. When did disability parking spaces become storage places for snow? I mean, isn’t this kind of like deciding that the NICU incubators are the perfect place to house extra linens? You know you need the storage, it is literally part of every. single. winter. So you look around and decide that you’ll use the (already limited) spaces needed by the most vulnerable members of society? Why? It’s a parking lot, the entire surface is spots that you could use to hold snow. Michael took the pictures below (he’s compiling a scrapbook). The one on the left is at the butcher shop, okay fine, whatever, I didn’t want your hipster sausages anyway. But the second one is at the Indoor Farmer’s Market, which is held in the community senior center! You cannot tell me that the folks who routinely use the SENIOR CENTER are cool with sacrificing one of their (few) disability spots to snow. Or that the grounds-people who work there are that oblivious. I just—I don’t want to feel tired already. It’s only the 4th. Do better.

3. I Influenced Someone! OK, sure, he’s my husband and he was probably going to do this anyway, but I told him to make a Substack and that totally counts. I believe I am now officially an Influencer. He writes about difficult contemporary poetry (he would say it’s just poetry, but these are the poets who move beyond first-person immediate reaction poems). He is a professor and I so rarely get to see his work because I haven’t been a student in a really long time. And it’s easy to forget that Super Spouse isn’t his only persona. It’s nice sometimes to think about something other than myself. Sometimes.

Makings of the Sun

And you may ask yourself . . . .

Gentle Reader, what have you gotten yourself into here? Some random old man’s thoughts on poetry – are there no better ways to waste your time…

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9 months ago · 7 likes · Michael Thurston

4. I Had Some Great Travel and Also It Was Hard. I loved all the travel we did over 2025, and I’m glad that we’re dialing it down this year. Oxford and England and Spain and the beach and Antarctica! It was a lot (though not as much as 2024). I mean, I say that, but we’re heading to Toronto next weekend for a conference, though I have been assured that the hotel is accessible and we are going only to restaurants that are accessible. My spoons are low and my excitement about leaving the house is less, and I am ready to relax into being a homebody for a while.

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5. I Resolve to Eat Like a Healthy Person Instead of a Stoned College Student. When I stopped doing the highly restrictive AIP diet (which totally works for some people but led me down the disordered-eating rabbit hole of wellness) after 18 months (you’re really only supposed to do it for like 12 weeks, but see above, wellness-rabbit-hole plus me, and also I combined it with the Wahls Protocol, so I had twice the disorder for half the food), I went whole hog into the Standard American Diet of alcohol, bread, and sugar. I am still planning to drink and eat the occasional bread or sugar (this is how I’m interpreting the Flexible part of FUN), but I’m going to try to eat a vegetable, too. At least two. Per day.

6. I Resolve to Lean In to Not Going to the Office Too Much. I wrote in 2024 that my office is trying to kill me. Instead of once a week, I’m going to try for twice a month. And if I’m still wrecked, I can go down to once a month. Or even force my coworkers to learn my job and then quit. Though I think I would get bored if I did that. I do love my job.

7. The Influencing Continues. Another thing that is making me excited about 2026 is that I will be joining an event as a storyteller next Sunday, January 11, from 4 to 6 p.m. EST. I will be telling a story, like The Moth Radio Hour!, about accessibility. I am going to cannibalize this Substack mercilessly. Any readers in the western Massachusetts area should come watch me and cheer loudly every time I say something funny. It’s free, though a suggested donation to DISCO (DIsabled Stories COllective) is appreciated.

   

8. Continuing to Embrace Assistive Technology, or If Rocky Can Do It . . . So just before Christmas, Rocky got neutered. (Yay! Merry Christmas!) For the first two days, the vet insisted he wear the Cone of Shame, because he’s long and could potentially twist himself up to lick at his incision. But then we got him an inflatable donut to wear around his neck, and he bore it like a champ. Barely seemed to notice it, and it was way more manageable than the cone. I think it’s inspiring. He healed up nicely and honestly, if a seven-month-old puppy can put up with an assistive device around his neck, then I can deal with my various needs. (A new bed rail! Using my shower chair!)

   

Image description: Black and white puppy looking up at the camera, wearing a gray inflatable ring around his neck.

And I made it to eight things! I think that means I can stop and send this out to you now.

So first, I am not good at recovering. By which I mean, there is this truism in chronic illness that says basically, if you overdo it one day, you’ll pay for it with fatigue and needing to lie low the next (or the next few). I don’t really do this. And for a long time, I didn’t have to. I was always happy and secretly proud of myself (because I had so much say in the matter?) that if I overdid it, I usually just needed to stretch out on the bed for an hour or so, or go to sleep that night, and the next day I’d be fine! Good even. This is/was great, because it meant I wasn’t scared to do things, since I wouldn’t pay too much of a price.

It’s taken me every bit of a month to recover from Antarctica.

Partly because it was a tough trip for a person using a wheelchair. But partly because I am shit at doing recovery. I’m not sure which is worse, but the two together? Yeah, These tastes, not great to begin with, do not taste great together. We got home and four days later hosted my family for Thanksgiving. Then we had a week to chill, during which I went to the office a couple times because this is our big fundraising time and I need to raise a bunch of money for my nonprofit literary magazine. (What? You want to help? Well, if you’re sure. . .) Then the next weekend we went back to New York City, to see Bill and Ted’s Excellent Godot, this time with friends, which was fantastic (even better the second time). Then we got Rocky neutered (sorry, baby) and decorated the Christmas tree and addressed 100 Christmas cards and I had a dentist appointment and a doctor appointment and I went back to the office, and throw in a couple dinners out with friends and a movie last night on top of it all, and maybe I haven’t been taking this recovery thing very seriously.

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Well, my brain hasn’t, at least. My body, though—oof. My body is super-aware that I have not tried to recover with anything like seriousness, and it is shutting the fuck down.

In all kinds of ways. On one of my days at the office it took me seven minutes to stand up from the toilet in the restroom, because my legs were like, NOPE. (And you know I’m not exaggerating because I’m being very specific about the seven minutes.) Really, it was just the knowledge that we definitely don’t pay our editorial assistant enough for me to ask them to come help me, that finally got me up off the seat with one massive burst of energy. And then: I have a hook on my bed that I use to lever myself to sitting when I’m really tired, and it broke, and suddenly I couldn’t sit up in bed without Michael helping me. WTF?

It’s been a hell of a month.

The result of all this, both this month but also the last year of travel, is I think my baseline (of ability, of physical fitness) has diminished. I spent the last eighteen months mostly traveling with Michael and I am definitely less able-bodied than I was when we started. I think part of that is my unwillingness to allow for adequate recovery. I think part of it is that I left behind my physical therapists and modified exercise equipment and just hoped I’d retain what strength I had by sheer willpower (spoiler alert: atrophying muscles gonna atrophy unless you force them to work). I think part of it is what my dear friend, who also uses a wheelchair, warned me about when I was still walking, that if I got a wheelchair, I had to be careful that my brain didn’t assume it was part of my body and allow it to take over for my muscles. I think part of it is that I have progressive MS, which by definition, progresses.

It’s wildly frustrating and enraging and depressing and is not helped by my brain giving me dreams of being able to run like I used to. (No joke: I dream, usually at least once a week, that I have forgotten that, while I can’t walk, I can run, if I just start. And I feel so stupid for having forgotten this! And then, in the dream, I always ask myself, “Wait, is this a dream?” and then reassure myself, “No, because I can smell the air/feel the sidewalk/touch the wall.” And then I wake up. Womp womp.)

So I’m going into Christmas and New Year with some things I hope will help me navigate this new and fun space. First, I bought and read How to Be Sick, by Toni Bernhard, after reading a post about it by (who I think is taking an actual recovery break from social media this month). It’s really good. Really really good. I am working on trying Bernhard’s Buddhist practices for navigating life with a chronic illness. I might make Michael read it, too, since he’s much more Buddhist than I. I am recommitting to trying to eat a little better. Not going whole hog into disordered eating like I did in 2018, but you know, maybe eating more than two vegetables a day. I think I’ll try to reconnect with one of my physical therapists in the new year, and tell him that I really need some targeted occupational/physical therapy exercises for, like, standing up from the toilet. I think I’m going to limit going to the office to only once a month.

Mostly, though, I am going to rest. Give this recovery thing a real try. Fingers crossed for a Christmas miracle!

Image description: The face of Rocky the puppy, with a white chin and streak up his forehead, black fur around his eyes and ears and brown eyebrows. He is showing me how to rest.

So we went to Antarctica in the beginning of November (which is late spring in that hemisphere). And it was incredible. And hard. And unbelievable. And so so hard. Partly because Antarctica is a polar desert (more about that in a sec), where most people will never go, able-bodied or not. Partly because it’s really important not to taint this isolated landscape with anything that might kill all the wildlife, like avian flu. So expeditions are limited and of course, there are no hotels or anything on land. Partly because I tapped into my vast reserves of internalized ableism and insisted, “No, totally, I can do this, what? It’s no problem. Sure, I can walk a little. Yep, totally fine.”

Spoiler alert: None of what I said is true.

Also a heads up: If you use a wheelchair 90 percent of the time, you are not actually “semi-mobile” anymore. Maybe “occasionally upright,'“ or “slightly-able” is a better phrase. Or, you know, just “wheelchair-user” and leave it at that. (“Wheelchair-bound”? Never!)

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NONETHELESS. I am a stubborn and semi-delusional human being, who often lucks into fantastic support systems, which in this case was the always-stellar Super Spouse, joined by some wonderful friends who came along, and the absolutely phenomenal crew of the National Geographic Explorer cruise ship. (Also Super Spouse was subsidized as entertainment, and I got a discount as his wife, so really it was two-for-less-than-one, and with such a great deal, who was I to say no?1) So let’s dive into what this trip was actually like, for me as a turns-out-pretty-much-full-time-wheelchair-user.

So first, we had to get to the bottom of Chile, which required a ten-hour plane ride from New York to Santiago. I knew I was going to be in trouble on the plane, because, although I can usually get to and from my seat to the bathroom by holding onto seat-backs, I really couldn’t make my legs function this time. So I used the aisle chair for the first time! The aisle chair is when the attendants come to your seat with a little narrow roly-chair and strap you in (like for serious, my legs were bound tight) and roll you down the aisle. Okay, so I am very much straight size. Meaning I am not heavy or big—most people would call me slim. But I barely fit on this seat and my hips hit both sides of the aisle seats all the way down. I do not know how anyone bigger than me could use the aisle chair. It’s kind of fucked up. Though in truth, I’ve thought this about airplane bathrooms for a while, and folks seem to manage. Still though.

From Santiago, we took a smaller plane to Puerto Natales, which is near the very bottom of Chile, at the edge of Patagonia. (I couldn’t help but feel spiffy wearing my Patagonia fleece next to Patagonia.) We had to disembark on the tarmac, and these incredible airline workers brought my wheelchair up into the plane, and then carried me off the plane, down the steps. It was above and beyond, and would be typical for plane disembarkation this whole trip. See above, lucking into incredible support systems.

In Puerto Natales (PN), we stayed at the Costa Australis hotel, which I had been warned ahead of time was not accessible, but did have an elevator. I figured that would be fine—I’d take a shower in the bathtub with Super Spouse’s help, and be grateful for the elevator. While we were there, though, I couldn’t help but notice the ramp on our floor, and the disability sign hanging up. I idly wondered if maybe this hotel WAS accessible (aside from the step in front of the entrance), then quickly put it out of my head. Turns out, as we discovered on our return, it totally was. We should have contacted them directly, instead of trusting the trip organizer. We did this on the return because there are only two available hotels in PN, and we were supposed to be in the other at the end of the trip. But THAT hotel is REALLY not accessible, like even the ground floor has stairs, so when we asked to go back to the other hotel, they arranged for a fully accessible room! With a roll-in shower and everything! So, y’know, lesson learned.

But I get ahead of myself. The hardest part thus far had truly been the bus from the airport to the hotel and back; it had very steep steps up and necessitated me being piggybacked up. (For those keeping track at home, this was the fourth continent on which Super Spouse has given me a piggyback ride.) The next day we were back on the bus and back to the incredibly tiny PN airport, which is literally like one room, and also they do not care what you take in your carry-on luggage to Antarctica, so I had ALL the lotions and soaps! And then we flew over the Drake Passage, which is infamously nausea-inducing to sail. We landed on King George Island, at a research station owned by Chile, and the flight crew AGAIN lifted me down the steps and wheeled me over to the Zodiac boat, an inflatable pontoon thing (see photo at the top). The crew lifted me (sans wheelchair) into the boat, where I sat on the pontoon and hung on for dear life as we all motored across the water to the waiting cruise ship. Then they brought a little metal chair down to the Zodiac, helped me sit on it, and CARRIED ME IN THE CHAIR UP THE LADDER AND ONTO THE SHIP. (Michael calls this way of helping me “Venice style.”)

I had been warned that the ship wasn’t entirely accessible. Well, that’s not exactly true. The travel coordinator who talked to Michael had assured him it was, with elevators to each level. (This, I’ve learned, is what most people think is the extent of accessibility needs: elevators. I mean, they’re not wrong, but it’s kind of just the tip of the iceberg. Heh.) The medical director for the expedition company, who called me to very nicely ask why the hell I thought I could do this trip in a wheelchair, was pretty clear the ship was not really accessible. By that time, though, we were three weeks out from travel, way too late to change our minds. So once on the ship I was happy to see that there was an elevator to our deck and to the dining room, and partway to the lounge, where all of the lectures were. (Not all the way, though, so I did have to go out on the deck and climb three stairs each time we went there, usually more than once a day.) And my wheelchair was 1/2-inch slimmer than the door to our cabin, so if we angled it exactly right, I could be wheeled inside.2

And once in the cabin, all was cool . . . except, um. There was a six-inch step into the bathroom (see photo). Why? Our friends thought maybe in case of flooding? But if your cruise ship has let on enough water that a six-inch step is necessary, aren’t you kind of fucked already? What it meant for us was that Super Spouse had to leap into action every time I wanted to use the bathroom, and help me up the step. That was less than cool. Luckily the other (public) bathrooms around the decks had no such steps, and I quickly figured out which of these I could more easily use. These bathrooms also weren’t accessible, so I had to lever myself up to standing to get into them, but they did have grab bars everywhere, because being on a rocking cruise ship is a bit like being in a disabled body. Balance is hard to find.

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Once on the boat, though, we could enjoy Antarctica. There were lectures from the guides each day (and Michael once!), and we had gorgeous weather, sunny each day and a balmy 32 degrees F (0 C). We saw so many penguins, and orcas and humpback whales from the decks. We ate so much food and drank so much Chilean wine. Michael did all of the outings and hikes except one, when he took himself instead to the inaccessible spa (boo!) to get a massage, while I resigned myself to staying on the ship and drinking coffee in the lounge that I could get to myself.

To be honest, it’s been a while since I have been in a situation where I had to think hard all the time about everything. I had to think hard about which bathroom I could use, and then try to make sure I could stand up from the toilet after. I had to psych myself up every day when we went to the lounge, and then muster the strength to lurch up the stairs and back down. It was really important to me that Michael do all the hiking and sea kayaking (!) that was on offer—a form of me being able to care for him, I think—but when he left me on the ship alone, it took extra effort to wheel my chair over the inch-high ledges before each door (if you’re wondering, I backed over them, using my feet to push off the ground at the same time), and to lever myself into bathrooms, etc. It was exhausting, and I was grateful for the evening cocktail hours, with passed hors d’oeuvres (even though this was in the lounge. Womp womp). I definitely needed a drink.

BUT! The expedition director was so kind and the crew were so lovely; every day he would come by and ask if I wanted to do the outing. And mostly I said no because see above (tired), and it would just mean sitting in the cold while everyone else hiked. But on the day of the actual continent landing (before, the landings were all on islands), he insisted that it would be no problem to get me to land, and that I really should set foot on the continent. And so the crew got me, Venice-style, onto the Zodiac, and we got to shore and I sat and watched (and smelled!) penguins, and got my fifth-continent-piggyback from Michael. The last full day had a Zodiac boat cruise around the bay of Deception Island, the caldera of a live volcano, and again, they all helped me get on the boat and do the thing. I was really struck, and deeply touched, by how eager everyone was to help me manage this trip.

Some cool things I learned:

1. I mentioned “polar desert” in the title. Antarctica is every bit of that. It only gets an average of 220 mm of precipitation a year. That’s 8-1/2 inches total. All that snow you see everywhere is built up from previous years. Also it’s SO DRY that my lips were chapped from the jump and my nails kept breaking. And of course there is almost no vegetation at all, so the sun, it burns. For true. Between that and the wind, we were very rosy indeed.

2. All of the penguins, seals, and orcas and other whales eat krill, which only eats algae under sea ice. (Seals also eat penguins and orcas eat penguins and seals, but still.) Sea ice is disappearing, which means there is less krill. But also humans trawl for krill to make omega-3 supplements. But the punchline is that the krill get their omega-3 content from the algae. So if you like penguins, seals, and whales, but you also buy krill pills, STOP. Just buy algae pills instead and save the wildlife. Also penguins smell really bad. Fun fact.

3. Going very far south in their spring/summer is similar to going very far north. The sun doesn’t begin setting until close to midnight and it rises around 3 a.m.

4. There is an underwater volcano in Antarctica and the water immediately around it is very warm. Whalers used to dig hot springs for themselves near it. And it cooks the unfortunate krill who try to swim across it. We saw a band of pink krill on the shore one day that had died trying to swim across.

5. Apparently jumping into freezing ocean water in just your swimsuit is exhilarating (but can also kill you? you have to sign a waiver saying you acknowledge that possibility). Michael and our friends did the polar plunge at the end of the trip, where guests were invited to come jump in water that was -1 degrees C (30 F). The crew discouraged anyone with health problems from partaking, so I had to nope out, but it’s supposedly fun if you’re into that sort of thing.

And then it was the end of the trip. We made our way back to King George Island, where I was again stymied by wildly inaccessible toilets. I was really tired by this point. I was Venice-d up to the plane but when we were back in Puerto Natales, getting onto the bus nearly killed me. When we got to the second, very much inaccessible hotel, the guide took pity on me and had us transferred back to the first hotel. Where we had a fully accessible room and bathroom! With a roll-in shower and grab bar next to the toilet! I nearly cried into my Pisco sour with relief.

Once we were home, after an uneventful but LONG travel day, we collected Rocky from our amazing friends who dogsat him the whole time. We had four days to recover before we hosted Thanksgiving, with four members of my family. And then I collapsed, and slept, and am only now beginning to recover. It helps to watch this video our friends made of Rocky and his new friend.

So after thirty hours, give or take, and rides on an inflatable boat, charter plane, two real planes, and a three-hour car ride, we are back from Antarctica. I have so much to say. But weirdly, I am quite fatigued, physically. Go figure. And also, this trip. Oof. There is a lot to process. Not even counting the disability signs with boobs! (Yes, this is a thing in the Santiago airport.)

I will write more after Thanksgiving. But the quick takeaway: 1) This was the hardest travel I have ever done. 2) Accessibility isn’t really a thing in Antarctica (but we knew that). 3) The staff and guides of Lindblad Expeditions are beyond. Super Staff. Truly. This, however, is not to say that Lindblad’s Antarctic trip is accessible or that they provide accessible vacations (I don’t know if they do).

But since it has been a MONTH since I wrote last, I wanted to share something, and that something is my thinking more about the Lucky monologue in the new production of Waiting for Godot, starring Bill and Ted (aka Alex Winter and Keanu Reeves).

I wrote about this a bit in October, but have been thinking more about it. I am going to get a little bit geeky here, so bear with me, but I promise I won’t go block-quoting the text or close-reading like some sort of nerdy English PhD. In this iteration of Beckett’s play, the Lucky character is physically marked as disabled in a couple of interesting ways, which inclines me to read the actor (the remarkable wheelchair-user Michael Patrick Thornton) as performing Lucky’s one speaking part with an eye toward disability as well. Traditionally, Lucky’s monologue is delivered at ever-increasing speed, which highlights its absurdism and nonsensicality (is that a word? I think so?). Like this:

Or this (with Billy Crudup as Lucky!):

But Thornton goes slowly the whole way through. As though what Lucky is saying makes sense. Which it almost does. He’s interesting about this, in an interview with TheaterMania. I’m going to revisit something he says here in a sec. But first, a couple of things:

The first is that the monologue (I think the Billy Crudup version above has subtitles, if you want to read along) is basically a run-on sentence that uses weird made-up words and phrases, some of which are English and some aren’t (like “Acacacacademy of Anthropopopometry of Essy-in-Possy of Testew and Cunard” and the repeated quaquaquaquaqua), references to God that don’t go anywhere, the repeated “a skull a skull a skull a skull in Connemara” (which might be a line you’ve heard or just the title of Martin McDonagh play, also really good!). And it all blends together in most versions, but when Thornton does it, you find yourself trying to listen hard (or at least I did). And even just the scraps I mention here show that Lucky is parroting out institutional language, of the Academy (higher ed), the Church, the legal profession (with all those quas recalling sine qua non and other stuff). Even the skull in Connemara recalls Oliver Cromwell slaughtering the Irish in the 17th century (military and government).

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And usually this is understood as: Lucky is very good at listening and parroting, but the words are meaningless in his mouth because he lacks understanding. And that maybe the lack is compounded by the institutions themselves being opaque or even absurd. And I’m a good student, I totally agree. But also! While these are institutions that have historically been bad in different ways to different groups of people. they have ALL been bad at different times to disabled people. Especially those who are obviously disabled, like, say, in a wheelchair, as Thornton is. It also opens the door to considering more invisible disability, too. Like intellectual ones or neurodiversity.

Which leads to my second thought: If Lucky is visibly disabled, AND if he is speaking slowly enough to be understood, AND if despite that, the words still don’t make logical sense, perhaps we’re also being put in a deliberate position vis á vis intellectual disability or neurodiversity. In the interview, Thornton said of his decision to play the monologue this way,

The most challenging and fun thing you can do with absurdist text is to treat it as if it’s not absurdist. A lot of times, that speech becomes a parlor trick of volume and tempo. I was more interested in trying to connect to the audience in a way where, even if they don’t understand exactly what’s being said, that they get the underlying emotion.

I think he’s onto something, because I think what results from the actor trying to connect with an audience that doesn’t understand what’s being said, is a twofold experience. Stay with me here: We’re simultaneously the neurotypical person trying to understand someone who is presenting as at least neurodiverse—and we’re failing. But we also find ourselves in a position of what I imagine neurodiversity might feel like, wherein someone is speaking to us very seriously and using big words and we just cannot make it make sense. The audience is thus both able and disabled at the same time, by Lucky’s slowed-down speech. And inhabiting both roles simultaneously is disorienting, and compounded by the other characters’ seeming interest in/bafflement by Lucky, which reinforce the duality of the audience’s own dis/ability positioning. AND the instability of that position, as the monologue progresses (now you are the able one, now disabled), seems to me awfully indicative of how disability actually works. So Thornton’s Lucky is both physically and intellectually disabled (or at least neurodiverse), and the fact of the former opens us up to the possibility of the latter, AND maybe compels us to inhabit that space with him, through the choice of performing the monologue as normal speech. Whew.

I mean, right? Maybe? I can’t post a video of the performance, of course, so I can’t refer you to specific moments. And I’m working off a month-old memory so, you know, I might be wrong. But I might not be, and if nothing else, this production really made me sit up and take notice. And not just because of Keanu Reeves.

Anyway. This is what I found myself thinking about when I couldn’t get off the inaccessible toilets on the Antarctica cruise. But more on that next time!

• October 23 is my brother-in-law’s birthday (yay!).

• October 24 is the day my dad died, which I didn’t really think would happen, even though he was sick for so long. Michael and I try to toast him on his way every year.

• October 25 is the day my beloved dog Scout died, at 16.5 years old (though unlike a parent, replacing a dog has proven to be both possible and even heartwarming).

• October 27 is my wedding anniversary (yay!).

• October 29 is my dad’s birthday (he would have been 77 this year).

• and then Halloween. When all the ghosts come out to play.

I mean, that’s a lot, right? It’s not just me. Throw in an October Slide, colder nights, and shorter days and this month is trying to break me. Thank god for apple cider donuts.

And for distractions! Pre-Slide, or maybe as it was beginning, a friend and I went to New York City. This friend had previously invited me to go with her to a resort, and I did in 2024, but it turns out that lying by a pool all day is actually not my kind of travel. Especially when I can’t manage to get into town by myself, and since I wasn’t yet using the wheelchair, my mobility was, ironically, limited. When she invited me again this year, I demurred and suggested instead an overnight in NYC, complete with a Broadway show.

OK, so I’m not super into musicals, which is I guess what people mean by “Broadway show”—but I am a sucker for seeing famous people I like onstage. So obviously I pushed for us to see Bill and Ted’s Beckett Adventure. Wait, no. That’s not the title. Just Waiting for Godot. Starring Bill and Ted, aka Alex Winter (the better actor, it turns out) and Keanu Reeves (who is Keanu Reeves, so really “better” is not all that relevant). But here’s the thing: There were many ways that this staging differed from past performances of Godot that I’ve seen and studied. Not just because of famous people! (I mean, there have been famous people doing this play before. One I wish I had seen was Steve Martin and Robin Williams, which of course was done long before YouTube was a thing, and so only clips of furtively taped scenes are available.)

ANYWAY. Keanu was NOT the most interesting part of all of this! No, really! The most interesting was that Lucky was played by Michael Patrick Thornton. And Michael Patrick Thornton, as a result of having had two spinal strokes (yes, this is a thing!) in his 20s, USES A WHEELCHAIR. He played Lucky, the mostly silent slave who breaks out with a doozy of a monologue toward the end of Act One.

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I had no idea.

I mean, I am sitting in the theater, the play is going on, and suddenly Lucky and Pozzo appear, but Pozzo is wheeling Lucky rather than whipping him, and the dynamic is completely shifted, from master-slave (which is definitely still part of it), to something more . . . caregiving? I mean, is that possible when one is yelling at the other and the one in a wheelchair keeps flipping the bird? But there are these moments where they are clearly looking out for each other’s physical safety. AND AND AND. Lucky delivered his monologue at a normal pace. This is huge. If you know the play, you know the monologue is absurd and is often delivered in increasing and ultimately breakneck speed, rendering it nonsensical and seemingly insane. But at a regular cadence, it becomes something you listen to. And something you think you might understand, if you just pay attention and maybe listen differently. I read an interview with Thornton where he said that the key to absurdist theatre is to deliver it as if it wasn’t absurd. I have a second thought, since my disability-awareness hat is on: I wonder, intentionally or not, if there was a gesture toward engaging neurodiversity here. The monologue, in its usual guise sounds nonsensical. But in this performance, I think there was an invitation to follow a different mode of engagement. We were captive audience members, and here was a character who very much wanted to communicate. And by going slow, he shows us that we might actually understand? Maybe? Maybe I’m givingThornton too much credit. But I don’t think so. I’m going to be chewing on this for a while.

Pre-show we went to Sardi’s, the classic famous Broadway restaurant with the caricatures of famous people on the walls. It was close to the theater, and honestly, it’s the kind of place that I’d never go to if I was just IN New York. But it seemed right. It is pretty accessible, overall, and they were great about letting me stay in my chair and ensuring I had room. The bathrooms, though? Oh dear.

So I have this thing where if I can’t use the bathroom in a restaurant, I can’t go to it. (If I can’t pee there, I can’t eat there.) So I was a little nonplussed to find that the Sardi’s bathroom is not only up a flight of stairs, but the only elevator is in the building next door. So getting up there was kind of a thing. And then there’s no accessible stall, and the corridor into the stalls is too narrow for a chair. So I had to lean on the woman who sits up there to give you towels, and stumble into a stall. I think that’s a fail. Which is a shame, because it was reasonably priced and decent food. Sigh.

On that note, NYC is a lot, and is hard from a wheelchair, though we did pass a couple folks—in manual chairs!—wheeling themselves around Times Square. I am glad I don’t live there now, though. Also hotel rooms are UNBELIEVABLY expensive now. Holy cow. One night at the midtown Hilton was equal to like, four days in an upstate AirBnB. Oof. And breakfast wasn’t even included! WTF?

October has been a busy month beyond that trip: we closed up the beach house, hurrying ahead of a Nor’easter, and the weekend after that we entertained visiting faculty for a symposium on Hemingway that Michael hosted and spoke at. Looking back, I can’t tell if I was Sliding or just frantically trying to keep my head above water. I’m grateful for today, which is quiet—my main plan is to catch up with a friend and go to anniversary dinner at a very accessible restaurant with my spouse.

Which is good because in November, I am embarking on what may be my stupidest travel yet. Definitely not very accessible (we are way beyond asterisk territory here). But more about that next time.

I did disabled-tourist things that I want to write about, including going to a show in remarkably accessible Broadway theater, eating at Sardi’s (!!! With the caricatures of 1950s celebrities!), and making decisions about how to make our beach house more Emily-friendly.

But yesterday we closed up for the season early and scrammed before a Nor’easter hit, and then I woke up today and my legs are out. And my hands are already fatigued before even typing! I did manage to shower, but only after reintroducing myself to gravity and spending twenty minutes fighting to get up off the floor again (Super Spouse was grocery shopping).

And I just can’t. I’m sorry. I slept fine and should be fine, but I am not. I think this is what the very smart calls the “October Slide.”

Whatever What Is

the October Slide

In late September 2018, we were scheduled to fly to Long Island for a beach wedding. I had booked a beautiful rental house. The bride and groom had rented a ramp so that I could access the oceanfront deck. But instead of the beach, I spent my week in bed with awful tachycardia episodes, including a night in the hospital where Amelia gallantly held my be…

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8 months ago · 57 likes · 42 comments · Jessica Slice

I have slid. I have nothing to give right now. But I plan to be back to it next week. We’ll see! Meanwhile, please enjoy this video of Rocky (12 pounds) and Jupiter (190 pounds).

The above photo is what early fall looks like, in the morning, in New England. Notice there’s no leaf-changing yet. It’s happening, but it really comes into its own in October. So don’t plan any leaf-peeping before then. Full disclosure: I did not take this picture, Michael did, while kayaking this morning. I was at home, showering and then getting myself dressed and making the bed. This took the full 2.5 hours that Michael was out. Also many spoons. But Michael brought me a morning bun from the bakery that’s on his way home, so I think I am good. Morning buns will do that.

BTW, this will be a cluster of thoughts ultimately sort of organized around things I think you should read, rather than a coherent essay about a thing. Changing seasons does that to me. I know I am always disparaging my posts by calling them brain-dumps, but this will REALLY be a dump. Enjoy!

Speaking of Michael, I want to alert all of my faithful readers (I love you, don’t change, you’re fantastic) to the fact that he has started a new Substack! At my urging, thank you very much. It focuses on contemporary poetry, mostly the harder stuff (not the confessional-free-verse that gets all the attention) and it’s way smarter that I usually am. If you like poetry, I recommend it, not least because I have insisted to him that there are people on Substack who want to read about poetry. And my friend and fellow writer says I’m always right. Also, it will always be free to subscribe. I don’t know what else I can say.

Makings of the Sun

And you may ask yourself . . . .

Gentle Reader, what have you gotten yourself into here? Some random old man’s thoughts on poetry – are there no better ways to waste your time…

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9 months ago · 6 likes · Michael Thurston

OK, I have done my spousal duty, and now I will talk about me again. And fall in New England, which has started and is lovely. But it is also reminding me of my inability to wrap my head around that fact that I can’t handle heat anymore with MS, and more than that, I can’t handle humidity. The heat part (and maybe also humidity part?) is something called Uhtoff’s Phenomenon, which I only learned about, NOT from my neurologist (WTF?) but from fellow writer and her very good Faulty Wiring, wherein she says all the things about MS that make me think, shit, I should have written that. And also she’s almost as funny as me. If your neurologist (what? you don’t have one?) hasn’t told you what Uhtoff’s is, just go read her post. Then come back.

Faulty Wiring

Uhthoff's Phenomenon

It is turning into one looooong, hot August – at least, that’s how the past four days have felt: long and hot. Time itself has been suspended inside dense, warm air – hot days melting into hot nights. Clouds have abandoned us, leaving an unencumbered pulsating heat beating down upon the earth. I’ve almost finished an entire bo…

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10 months ago · 4 likes · 6 comments · Evie Orr

ANYWAY. September has thus far been pretty manageable heat-wise. hanging out in the low 70s (around 22 Celsius), which is totally manageable for my body. But it turns out, humidity gets me at least as often, and it’s been humid AF as we finally get some rain in these parts. So, you know, I’ll be sitting on the porch with Rocky, and it’s a lovely 72 degrees (22) and I’m so relaxed and chill and then I decide to go to the bathroom and, well, my legs just nope out. Meaning that I try to lever myself up from the wheelchair to standing (a necessary part of getting onto a toilet), and my glutes are sleeping and my quads seem to not understand the assignment, and I’m flailing wildly at the grab bars because the only muscles left that function are in my arms. And I’m baffled because I have forgotten that humidity, even when it’s totally temperate, fucks with me. I forget this every single time. Every time. I am usually not this slow of a learner, but I cannot get it into my head to pay attention to humidity. Maybe it’s unconscious stubbornness? Hmm.

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Other fun things that happened to me this week: I got BLOCKED! By two different men! (It’s always men, #NotAllMenAlwaysMen.) The last time I was blocked on Substack was by a young guy with an intellectual disability who kept telling me he loved me because Jesus does, and also gay people are bad. And when I asked him how he knew that Jesus loves me but not gay people, he blocked me. (I actually think it was his dad, whom he lived with because of his disability, and who seemed quite fundie.)

But THIS time! No such difference of opinion, because I was blocked before that could happen. And the worst part was that I was engaging in good faith! I always engage in good faith. It’s like my response to passive-aggression, which is always to respond to what’s said, rather than what’s implied. (“It must be so nice for you, always traveling places. [Sighs pointedly.]” It IS, thanks! [smiles broadly]) Life is so much better when you do. The first guy, Bill, was responding to a post by , about the ridiculous autism announcement out of the White House.

Screaming Into the Void: Notes from the In Between

fine, i'll talk about the 'autism announcement'

I’m just so tired. Tired of the scapegoating, the blaming of women and pregnant people, the lies coming from America’s administration…

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9 months ago · 3 likes · 4 comments · Taryn Jaye

Full disclosure: There are neurodiverse people in my family so I care about this. And he made some comment about how there are studies that show that Tylenol causes autism (there aren’t, it doesn’t), I asked him for a source. And he gave one that said the link was about as strong as that showing that fevers in pregnant people cause brain damage in infants. So I asked him what he thought was worse, autism or brain damage, and he blocked me! After first accusing me of not being willing to do my own research. Which, to be fair, is true. But I did do some research into that Harvard study and this is way more compelling, from .

Dr. Rubin's Substack

Tylenol, Vaccines, and Leucovorin: What Trump and RFK Jr. Got Wrong

At a White House event, President Trump, flanked by HHS Secretary Robert F. Kennedy Jr., FDA Commissioner Marty Makary, NIH Director Jay Bhattacharya and CMS Director Mehmet Oz announced that Tylenol use in pregnancy causes autism and promoted leucovorin as a treatment. Trump also used the stage to revisit old anti-vaccine talking points, repeating long…

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9 months ago · 483 likes · 55 comments · Dr. Zachary Rubin

Then I got blocked by Don, who responded to a feminist Substacker, , posting a note basically riffing on the Margaret Atwood quote, “Men are afraid women will laugh at them. Women are afraid men will kill them.” Don suggested being canceled by a woman is what men fear, and I asked him to clarify if he meant that cancel culture is worse than being murdered. He responded something about me having MS (yup!) and then blocked me. I was so confused. And annoyed, because I had planned to respond that if I ever find the guy who gave me MS, I will totally cancel him. But I couldn’t. And I thought that was pretty funny. Dammit.

I’ll wrap up by promoting One Battle After Another, which we saw last night and is great. Go see it. You won’t regret it. Not least because it has Sean Penn, Leo DiCaprio, Benicio Del Toro, and a new actress whose real, actual birth name is CHASE INFINITY. That alone should make you go see it.

And now I must go enjoy this rather-too-warm Fall day, and play with Rocky, who is, in the photo below, pushing the boundaries of “lap” dog.

So I had thought I would pick up where I left off and write something this week. But I am slamming into a couple of disability-realities, and so this may or may not be a coherent newsletter, for which I both apologize and laugh at you for expecting coherence. Ha HA!

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Two things are coloring my writing this morning. The first, less-cerebral, more immediate, is that I got my COVID vaccine yesterday. I am currently on an MS disease-modifying-treatment (DMT), which is a twice-yearly, six-hour infusion that keeps my body from creating immune B cells. Your immune system is composed of B cells and T cells—the latter are the ground troops that rush to any injury or sickness, give you fevers and pus and all the things your body does to get illness out of you. B cells are like the generals who stay back and learn from the troops’ successes and failures. Or, to get non-metaphorical about it, B cells are the agents of lasting immunity. But they also keep sending out the troops to fight nonexistent foes when you have an autoimmune disorder, and so it’s helpful to render them non-functional.

Which is totally great until you want to do something like, I don’t know, develop immunity to something. For folks like me, this is why MS makes us “immuno-compromised.” Not because MS is inherently detrimental, but because the treatments for it leave you vulnerable. I therefore have a very small window during which I can muster something of an immunity in response to a vaccine: at least four months after the infusion (when its effects are wearing off) and six weeks before the next one (so that any B cells that have come back have time to make immunity). So that was yesterday.

I am lucky enough to live in a state where the vaccines are still pretty available. (If you think COVID is not a big deal, you are wrong. Leave aside Long COVID. Leave aside your relatively mild symptoms. Repeated COVID infections get into your bloodstream and break the blood-brain barrier. It’s really bad.) I believe quite strongly that my single COVID infection at the end of 2022 is what led me from walker and cane (where I had hung out for several years with no progression on my MRIs) to wheelchair within months (and new lesions on my MRIs for the first time in more than a decade). So I don’t fuck around with vaccine-skepticism. Screw that noise.

That said, the vaccine does a number on me for 24 hours. My legs, not great to begin with, turn to sacks of wet cement, with all the structural integrity that this implies. My arm aches and I son’t sleep well because, well, trying to roll over with cement legs is hard. Michael got his jab, too, and has been feeling run down all day, which was not helped by me lurching VERY unsteadily to the bathroom last night. (Should I have used the wheelchair instead of my Rollator? Yes, yes I should have. Lesson learned—but at least I didn’t fall down.)

All of this has led to my second thing, which is more of an ongoing thing. (The vaccine side-effects are already starting to wear off and I should be fine by tomorrow.) The second thing is the pervasiveness of “Burdensomeness” and “Diminishment.” These are terms I learned to apply to my situation and how I feel about it by our incredible therapist who helps me and Michael occasionally, when living with a chronic illness feels like too much. Basically, the MS has left me feeling diminished in all sorts of ways, from not being able to guarantee that I can go to the bathroom in the middle of the night without falling, to not being able to accompany my spouse hiking 96 miles in the Scottish Highlands. This then leads me to feel like a burden, especially when I do fall on the floor in the middle of the night.

So I’ve been grappling with this for months now, and what I’m trying to do is to remember that all people diminish as they age—it’s internalized ableism that makes me think it’s only my disabled ass that’s a problem. Very few of us are 25 any more (a fact that is, as my dad used to say, better than the alternative [of dying before we get older]). And then the diminishing leads to feeling like a burden. And then the shame-spiral starts or the fear-spiral or whatever, and I begin to get scared that I am unworthy of love or care, and so. Which again, ableism, because we are all burdens on the ones we love. Babies and children burden their parents constantly. It’s a burden to have to come home to the same person every night even if you’re fighting. It’s a burden to walk the dog.

But we think of these as demonstrations of love. You go home to your partner because you love them, even when you’re fighting. You diaper your baby because you love them, even when they’re stinky. You walk the dog because you love them, and also don’t want them to shit in the house. Win-win. Burdensomeness is the opportunity for another to show you love and for you to accept it. And burdensomeness in response to diminishment is an opportunity both for your own vulnerability to shine through and for others to feel secure in their inevitable diminishing.

And so I burden you all today with my vaccine-diminishment, and broader grappling with disability. Next time, the cement in my legs should be gone and we can talk about fall in New England.

I don’t know when zombies started changing from lovable, shuffling undead types to something else, but I am increasingly alarmed. I attribute this to my disability, but also to my insistence on close-reading everything. Zombies have changed, and so have I. And honestly, I think it has come to a weird and fascinating head with The Last of Us.

So strap in for some spoilers and annoyance and half-thought-through . . . thoughts. Four things, really. Because I think I’m on to something, and it’s complicated.

Thing the First: A Very Brief and Incomplete Theory

I think something interesting is happening in the second season of The Last of Us, even though the first season has a(n inadvertently?) fucked-up message, especially in this MAHA moment, where disabled folks like me are increasingly viewed with fear and contempt. And vaccine skepticism. But Season Two. Something is afoot.

So a tiny bit of horror-geek background, if you don’t mind. There are lots of ways of thinking about monsters but one general binary is vampires vs. zombies. Vampire stories are usually worried about contagion of some sort—Francis Ford Coppola’s Bram Stoker’s Dracula was so obviously about AIDS and the forbidden love that will kill you. Interview with a Vampire was all about sexual liberation and decoupling sex and reproduction (wasn’t it? I mean, with pretty Tom Cruise and Brad Pitt?). Twilight, Vampire Diaries—come be like us (or I’ll make you like us) and pervert the natural order! Even Stoker’s original novel was a warning about how feminism was going to poison our women, or maybe how the east would infect the west with its superstitions, or possibly how the poisoned ground of the Irish famine might migrate to other countries. End result in any case? Reproduction is curbed, though seduction is not. Not for nothing, Stoker’s Dracula had hairy palms.

Zombies, on the other hand, are about invasion. Hordes of previously dead people shambling back to life and taking over a town or country. George Romero’s Night of the Living Dead is the seminal film, a 1968 warning about kids and Black people fighting their parents (or grandparents, you know, the dead previous generation) and/or the cops, who might as well be zombies. But always, the setup was that the dead inexplicably come back to life and must be stopped before they kill us all/destroy our way of life. This continues through Dawn of the Dead and Day of the Dead; The Walking Dead has folks being attacked and killed, before coming back to life. Even in Jim Jsrmusch’s (not very good) The Dead Don’t Die, the zombies are risen because the earth is off its axis (or something, I wasn’t really paying attention). The main point is: You have to be dead first to become a zombie. Even if just for a few minutes.

So the opposition has been: Vampires = contagious seducers, zombies (already dead!) = invading hordes. And this maps (kind of) onto cultural moments: the 19th-century New Woman = vampires; Civil Rights protests = zombies; LGBTQ visibility and AIDS activists = vampires; Communism and the Cold War = zombies.

Thing the Second: The Evolution

Okay, so this is where we start, right? (And sure I might get argued with by horror-movie aficianadoes, but don’t bother because I am making a point!) In the last 30 years or so, something has happened to zombies, and it’s picking up speed in this cultural MAHA moment. Zombie stories have evolved into contagion stories. They are no longer the walking dead, brought back to a hideous form of life after rotting in the ground. No, now you catch zombie-ism, whether it’s the Rage of 28 Days Later and 28 Years Later, or the fungal infection of The Last of Us. (It strikes me as important that Danny Boyle, when asked about his 28 movies, very specifically does not call his monsters “zombies,” but “infected people.”)

Another aside, because that’s what I do. The novella, I Am Legend by Richard Matheson, on which at least three movies are very poorly based, has a sort of zombie thing. But Matheson is pretty clear that the air-borne virus/bacteria (he’s not big on the science) turns you into a vampire. Afraid of the sun and all that. And his conclusion is wild, especially if all you know is the gung-ho jingoistic Will Smith vehicle or (reaching way back), Charlton Heston in Omega Man. We might return to this later, too, but meanwhile, read I Am Legend! It’s so good. Your mind will be blown.

Where was I? Oh right. So what we all call “zombie” movies/video games/apocalypses have morphed in recent decades from invasion into contagion stories, where someone gets infected and then infects others. The infected really don’t do anything else—most importantly, they don’t die first. And the only way to stop the cycle of deadly-infection-creating-scary-infected-people is to thus kill the infected people.

And here, as someone infected with a disease that other people find frightening, I have to pause.

It’s one thing to normalize killing me if I am already dead and walking around because some voodoo priest or astronomical anomaly has disrupted the universe. I mean, that’s a good metaphor right? Here is this outside force threatening us all, and it manifests as us vs. them, with all of us collectively in danger.It is another thing entirely to normalize killing live people (ahem, me) who are infected with a disease that scares you, or that makes them look scary to you and which, if you get close enough to them, you might catch. Suddenly it’s you vs. me, and only one of us has the power of the state behind them. (Hint: Not me.) Collectivism is out the window, and for disabled folks, that’s a problem.

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And yes, yes, OBVIOUSLY MS is not the Rage, or the fungal infection, but these are theatrical exaggerations of increasingly normalized realities. Because let’s say Rage-infecteees scare you onscreen. Who’s to say that you won’t also be just a bit creeped out by my hunched and staggering body, which incidentally, just SUDDENLY BECAME SICK FOR NO REASON. Especially after a pandemic shut the world down for a year, and the takeaway for most people was, Not fair! Only certain kinds of people were really at risk in the first place (i.e. immunocompromised, elderly, sick). And if you’re a little nervous, about all this happening again, maybe you’ll be more open to the idea that those folks are not such a terrible sacrifice, in the scheme of things. Or that my quality of life must be shit anyway, and perhaps it’s more humane to isolate me or help me end it all. Or worse, perhaps it’s better for society overall, if I am not here taking up resources from healthy, working folks who can write poems and pay taxes (below).

At the very least we should probably let the government surveil people like me. I mean, who wants monsters walking around all free and shit, amirite? (And before you get all eye-rolley and tell me I’m exaggerating, please consider that some folks think we are in the middle of a “woke” crisis because they heard about some drag queens reading books to kids once. And then they voted.)

Thing the Third: Is The Last of Us Doing It Again?

Which brings me to the second season of The Last of Us, in all of its complicated glory. This will have a LOT of spoilers, so y’know, proceed with caution if you don’t like that sort of thing. When we take up with Joel and Ellie, it’s been five years since Joel killed all the doctors and saved Ellie from being made into a vaccine and/or cure for the fungal infection that has turned much of humanity into mushroom-headed zombie-LIKE creatures. So we ended with a little anti-vax affirmation, celebrating the “nobility” of saving one child’s life, even if doing so condemns millions to death or worse. Joel ended season one as a hero for the viewer, and a hope for saving humanity.

But Joel and Ellie’s relationship in Season Two is strained, and we learn over the course of the episodes that he isn’t that well-liked by some in the community either. And then he dies, killed by the child of one of those doctors he shot, because it turns out that there’s more than one child in the world who has parents. And suddenly the ableist path of Season One becomes rocky. This culminated for me with the infection and death of one of the community members, and Ellie’s ultimate denouncing of Joel. (Though his death makes her regret some of that, which is more than this essay can take on.) A community member, late in the season, is remembered in flashback as having gotten bitten by the mushroom people, while Joel is out with him. He says to Joel that he knows he’s only got about an hour until he turns, but that will be enough time for him to go back to his wife and say goodbye before Joel kills him. Joel agrees, and then shoots him when his back is turned. A sad but necessary betrayal.

Wait, WHAT?

A person who is sick, who knows what being sick means and is inhabiting the sick body, says that they also know they will be okay just long enough for one last request. But he’s killed by the able-bodied person anyway, because the able-bodied person knows best. What the actual fuck? Honestly, I was gobsmacked—a dramatization of literally the worst fear of anyone living with an illness, that someone more fit (??) will decide for you whether you live or die. Because necessary? I was ranting to Michael all that night. Once again, The Last of Us was making it clear that sick people should die quickly and out of sight.

This is where I fear the evolution of the zombie has led us: to the further acceptance that sick people are monsters who threaten us all with contagion, rather than a warning that we should work together to ensure that even the most vulnerable survive. I was reminded of this watching 28 Years Later, too, as the population of non-infected people dwindles and the sick have taken over England. There, too, killing the sick is the given, right thing to do, even if they are now the dominant population. I’m reminded of the book I Am Legend here, too: Matheson asks the one question that these movies/shows do not ask: Whether, having become the minority population, the able-bodied are perhaps the monsters now. After all, they keep killing the vastly more numerous sick, who now comprise the bulk of society. Doesn’t that make them the scary ones?

Thing the Fourth: In Which Everything Ends In a Complicated Way

Which brings me to the end of this rather long brain-dump. Because this zombie evolution also seems to be bringing some interesting complications, and therefore I plan to keep watching. In 28 Years Later, the former doctor played by Ralph Fiennes appears to have figured out how to live among the infected without killing them. He paints his body with iodine, because the infected “don’t like it,” and when he must, he tranquilizes them with darts. He’s clearly a hero of the film, as opposed to the leaders of the able-bodied community who are surviving on the outskirts of England, and he offers the main child character a glimpse of a life that honors the dead and coexists with the sick. I couldn’t help but see the iodine as the metaphorical equivalent of masking, his careful coexistence indicative of his true valuing of life. (I suspect he will not be in the next movie, but his appearance here is notable.)

So, too, with the end of Season Two of The Last of Us, where Ellie demonstrates a growing horror at the able-bodied actions that Joel undertakes, and articulates a different way of moving forward. When asked by the wife how her husband died, Joel spins a tale of “bravery” that echoes Frank’s fate in Season One: he knew he was sick and so he bravely killed himself. But Ellie stands up and loudly contradicts him with the truth. She proclaims that the husband knew he was sick BUT THAT HE HAD TIME, and that Joel disregarded his wish and shot him in the back of the head. The wife is horrified and rejects Joel’s comfort.

Later, Ellie demands that Joel tell her what happened when she was under anesthesia at the end of Season One. When Joel admits that he killed everyone in order to save her life, her face falls. How could he? she asks. How could he decide that her life was more important than everyone else, that it was okay to shoot many folks in order to keep her from serving as a lifesaving possibility? What had been building all season as a conflict between father and daughter reveals a deeper rift, one that underlines that central question of survival. Who survives? And at what cost? And who gets to decide? The abject horror that she feels at learning that Joel decided that his wants (because that’s what they are: he loves her and so he wants her to stay alive) outweigh everyone else’s. And it is better to save one able-bodied person than to listen to or save the numerous sick. Ellie isn’t having it, and seemingly, The Last of Us is torn.

So where does this leave us? Welp, nowhere! I mean, these are just movies and shows, right? Who knows if these questions will continue into the next season or movie? Who knows if the infected/ing zombie will ever actually be cured or lived with, rather than killed? But as a disabled person with a chronic illness, I am obsessed. I am starting to find myself rooting for the infected, even if they are a little bit angry or have mushroom heads. Because I think something is happening here, and I can’t look away.