Adapted from Sitting Pretty: The View From My Ordinary Resilient Disabled Body by Rebekah Taussig with permission from HarperOne, an imprint of HarperCollins Publishers. Copyright 2020.
Rebekah Taussig’s engaging, thoughtful book, “Sitting Pretty,” is about growing up a paralyzed girl in the ’90s and early ’00s. Taussig is funny and smart and just sarcastic enough to be interesting and delightfully feminist and charmingly academic — and so is her book. In this excerpt, Taussig explores what it means to be lovable. And more importantly, what it means to love. Published by Harper Collins, “Sitting Pretty” is available from all the usual places. Learn more about Taussig at her site, rebekahtaussig.com.
An Ordinary Unimaginable Love Story
Sam Wagner was my one chance — at a love story, at being loved, at living the life of a wife. We went to church with the Wagners, and when Sam and I were 8 years old, he spent all of his allowance money to buy me a $3.95 Magic Eye book I’d picked out of my school’s Scholastic catalogue. His generous gift set off a tiny spark that maybe, if I wished it into the universe with all of my whole earnest heart, Sam would love me enough to marry me one day.
I still don’t know what did the trick but slowly, slowly, as the years stretched out and we turned into adolescents, Sam really did start to pay attention to me. He’d sit near me on the bus during youth group trips, and we’d sing along loudly to Relient K. He’d ask me and a handful of other church kids over to his house “to sing praise and worship songs,” then ask to braid my hair as we sat around the fire pit in his backyard.
I believed myself so rigidly stuck in my disabled role that it was very difficult for me to believe Sam saw me as anything other than his nonthreatening gal pal. I didn’t truly believe he felt anything special toward me until one 2 a.m. phone call, me sitting on the kitchen floor and Sam hiding in his basement, when he said the words, “I’m really into you.” “Really?” I said. I could hardly wrap my head around it.
I could never forget how lucky I was to be loved by Sam. Which made the experience of dating him very confusing. Because, it turns out, I didn’t actually like him the way I thought I did. I mean, yes, I liked him. Especially at first. But very quickly my crush turned into a begrudging affection, like the way you care for a little brother who grates on your every nerve, but he’s been through a lot of life with you and also, he’s pretty cute when he falls asleep on a road trip, so you can’t just throw him out on big trash day.
The idea of breaking up with Sam never really felt possible, because I knew what it meant. If I ended things with this harmless man-child, I would be alone for the rest of my life. I would never have a family of my own. Never feel loved again. Never feel wanted. And choosing to give all that up felt foolish. I could put up with almost anything to avoid being alone and unwanted.
At the wise age of 22, we decided to get married.
* * * * *
As you probably have guessed, the marriage didn’t go well. Out of desperation to get out, I found myself boldly unafraid of solitude, independence, or even being undesirable to potential love interests. What I found in this fearlessness was delicious: Nights alone drinking red wine and chomping down whole bowls of popcorn with Angela Lansbury on Murder, She Wrote. Sleeping in late with purring orange cats circling the top of my head. Reading every Jane Austen novel with hot drinks clumsily concocted from my sputtering, thrifted espresso maker. I leaned heavily into this sacred solitude for years.
I finally started an online dating account because 1. my roommate got a serious boyfriend, and the pair of them seemed very invested in getting me a boyfriend of my own, and 2. I was curious. At the empowering age of 28, I wanted to see: Would a wheelchair really be a giant obstacle for people? Would I put all this thought into my online profile and hear crickets in response? Or worse, would men be cruel? Would they laugh at me? Would they fetishize me? I was prepared for some uncomfortable dates that would make for great stories I could later recount for the entertainment of my best pals. I was even prepared for getting hurt. I wouldn’t let myself hope for much more than that.
I’m pretty sure I put more time and energy into curating my profile than any other online dating citizen. I agonized over which pictures to use, trying to find just the right number that included my disability, but to just the right proportion. What handful of images could convey that disability was a part of me without eclipsing all of me? How could I emphasize that I loved my nieces and nephews and eating take-out on porches and my own funky style without pretending that my paralyzed body wasn’t a part of all of it? How could I invite people to really see me without scaring them off?
At first I was pretty bored with the whole dance. There was the older guy with kids who only ever sent me long, quippy messages about how ordinary his life was. I found myself wondering what it might be like to be someone’s stepmom, but the messages slowed, and I hardly noticed. There was the sweetie pie in the blue baseball cap who met me for ice cream on a Saturday afternoon and clearly didn’t know what to do with a first date who asked follow-up questions after every little life detail he shared.
One notable interaction from online dating was with the scientist — a problem-solver, finding his great riddle in the disabled woman he’d met online! Soon I discovered he had a plan for curing my paralysis. It turns out, he had transformed his experience of Type 1 diabetes through a very specific diet and was convinced that my ailments could also be solved, at least partially, through a similar regimen. We’d probably have to add some exercises to the routine, but, as he assured me, he’d figure it out.
After a month of these fun times, I was amused, but little more. I had not felt a single spark of connection — in fact, nothing that even approximated a sizzle. I felt like an odd duck. Not necessarily because of the wheelchair in my dating profile pictures, but because something about the way I saw the world didn’t match these people I’d met.
Was it the wheelchair that had shaped that lens? Surely in part, right? Mixed with being the youngest of six in a family fueled by feelings and storytelling and the understanding that we had no money all with a backdrop of chemotherapy and surgeries and braces on my legs under the glow of the Midwest in the 1980s and 1990s. All of it, forces at work shaping me into the person who just couldn’t brush by life’s painful or complicated bits. None of it was traumatic. It just didn’t make my eyes dance.
And then, one measly month into the online dating, there was Micah. I found his face while scrolling through pages of profile pictures with my mom, giggling at all the shirtless, bathroom-mirror selfies. We both paused over his charming half grin. He wasn’t in a bathroom, no mirrors were in sight, and he was wearing a shirt!
“Send him a smiley face!” my mom demanded. She was giddy over his half-smile.
“Hold on,” I said, grinning back at his photo. “Let’s just see about this Micah, 28.” As I scrolled through his profile, I felt tiny little lovebirds flapping around my head. The more I read, the more I marveled. Was this a real person? Had the internet created him out of a lifetime collection of my Google searches and online shopping? This guy valued storytelling, curiosity, and artistic expression. He liked one-on-one conversations and was looking for someone who would be easy to talk to (Ding! Ding! Ding!). And, the real clencher, he made a joke reference to Dr. Quinn, Medicine Woman. Hello, you may have my heart right here and now, really, here it is, it’s yours.
I sent him a smiley face.
By the time I’d gotten in my car for the drive home, Micah had sent one back. It wasn’t until two weeks in that Micah asked me about my wheelchair. Gracefully, with care and curiosity in the middle of a back-and-forth thread about pain and empathy, he wrote: “You mention in your profile that you’ve used a walker and a chair since you were young. Is that something that has taught you empathy? How has it shaped your life? Maybe it’s a ridiculous request, asking you to fit such a large matter into a typed message, and maybe there’s a more polite way to be curious about such a situation, but curious I am, and so I ask.”
His question, his tone, his word choice delighted me. I treasured his genuine curiosity. Not a greedy grab for gory details, but humble interest. An acknowledgment that he didn’t know what it meant to me, and he wasn’t about to step in and try to fix anything. He simply extended an invitation to me to share my stories. I couldn’t have crafted the inquiry better myself.
We spent our first date eating giant cookies dipped in big mugs of coffee on a Wednesday night. When I coasted up the ramp to meet him, I don’t remember thinking about how he saw me — what the image of my paralyzed body sitting in a wheelchair might mean to him. Why is that? Maybe, in that moment when I saw him sitting alone on the patio of the coffee shop, I trusted that I was already so much more complicated to him than just one wheelchair or one turquoise dress with a lace collar (which is what I’d chosen to wear after three hours of deliberation). I rolled my hands into a pretend telescope (like I was a pirate sighting him across the ocean?) and said, “It’s you! You’re a real person!” We sat under a red umbrella, and I started talking too much, too fast, and he smiled and bobbed his head and chuckled sweetly.
Hours passed, I calmed down, and we hadn’t even begun to run out of things to tell and ask each other. Even when it started pouring rain, we huddled closer under our red umbrella and giggled at just how wild the storm was getting — were those actual rivers of water rushing down the street behind us?
On one of those early dates, we went thrift store shopping, and Micah confessed he didn’t know how to walk with me. “Do I walk behind you? Do I rest my hand on your handlebar?” I didn’t know what to tell him, but I liked that he let me in on his uncertainty. “I don’t know, how does this feel?” I asked, grabbing his hand and dragging him up the aisle. At first he didn’t want to push me anywhere. To him, it felt aggressive, controlling — the opposite of his driving force. “To me, it sort of feels like we’re holding hands,” I said. He considered. He hadn’t thought of it that way before. And bit by bit, we created our own currency, our own intimacies, our personalized displays of affection. From scratch, we imagined our love to life.
I was sure Micah was worried about sex, but he didn’t bring it up. In my head, fears about sex was the number one reason nondisabled people didn’t ask out disabled people. I felt an urgency to soothe any fears he might be keeping close to his chest, so one afternoon, sitting on my orange couch under the frosty window, I asked. “Do you have any questions about sex?”
Micah was casual and calm. “I actually read a few blogs and a really helpful article about sex and paralysis.”
“Did you?” I asked, amused and delighted. How simple, how helpful, how smart!
“Yeah, I mean, I felt a little silly, because they all basically said, ‘Of course disabled people can have sex.’”
I beamed at this curious, intelligent person I’d picked to sit with me on my orange couch, to introduce to my cranky cats, to spend all of my Saturdays with. He made the unimaginable love story feel so ordinary.
I was much quicker to know that I wanted Micah in my life for the long haul. He took a little longer, and that stung. It also felt true to his careful approach to life, and probably a bit more reasonable than my flash, bang, boom approach. But even after we both felt comfortable using the word “forever” with each other, we weren’t settled on the choice to get married. For me, marriage was wrapped up in the default route to life. I’d been there and had jumped out as quickly as the law allowed.
At the same time, I felt myself longing for a ritual, a day to mark, a ceremony with witnesses, a pocket in time and space to set down intentions with this miraculous, ordinary person I liked the most. Was there a way to build our own structure? To reimagine what two people can be to each other? To wipe the slate clean and create something from scratch? Did we have to do this thing like anyone we’d seen before, or could we use our unique quirks and rhythms as the guide?
In some ways, I think my disability is the force that disassembled the template to begin with. Then I found a person who already wanted something different, too. From the way our bodies reach for each other to the expectations we have for the future, we are open and curious. Together, we used our blank slate as an invitation for play and imagination.
I didn’t want a flashy ring or a one-way proposal. We chose a day to mutually recognize what the other person meant to us and declare our intention to commit to a very large building project together. We made collage wedding invitation zines using magazine clippings and thread. We invited only our families.
There was no aisle at our ceremony, and I definitely didn’t walk anywhere. My chair was a part of all the photos, an extension of me, a part of our romance. My dress was short, form-fitting, and all lace. (I also bought it for $7 at a thrift store three days before the ceremony.) Micah wore a pink floral short-sleeve button-up with a lavender tie, and we rented the rooftop of a building on the edge of downtown. We asked two of our favorite friends, Alyssa and Maren, to officiate, my sister to speak good words around us, and Micah’s sister to say a blessing. We all sat in a circle as the sun went down. Micah and I wrote a song together that we sang at the ceremony. It’s kind of like a vow song, but mostly a reminder of why we chose each other. A song to get in our heads, to sing in the shower or while we’re cooking or when we’ve forgotten why we’re together. A song to come back to us year after year.
Yesterday morning I slept in later than Micah. I’m always sleepier than he is, and on weekends, he gets up first and feeds the crying cats or washes the dishes that have inevitably piled up throughout the week. I rolled out of our bedroom in a giant sweatshirt with my big wooly socks and my bangs sticking straight up like an ’80s rocker. I found him working on the computer in our study. Our cranky orange cats were snuggling on the couch behind him, and the rain was making padding noises on our windows. I reached my arms out for him. He moved over to me and climbed onto my lap, straddling me. I nestled into his chest, breathed in his scent, and felt the muscle ropes along his back. This was our space, our story, our love. I rested there for a good moment and savored us.
A Q&A With the Author of Sitting Pretty
NM Editor Ian Ruder: The postscript to Sitting Pretty has to be one of the more drama-filled postscripts I can remember. You reveal that the day after turning in your manuscript, you and your husband, Micah, found out you were pregnant. Then, seven days later Micah was diagnosed with colon cancer. Add in the COVID-19 pandemic, and you’ve had a 2020 to rival anyone. How is Micah? How is the baby, and how are you holding up?
Rebekah Taussig: Thanks for asking. It totally depends on what day you ask. We have good days and rough days, but I think the thing that outweighs all of it is that Micah is doing really well. His treatment went really well. The cancer hasn’t come back, and he just went in for some tests and there weren’t any big red flags. I was really, really relieved about that.
It’s such a weird space because it is so hard, but there are also so many things we have to be grateful for, like this baby with his massive cheeks and his two teeth that are sprouting in. And when he grins up at us, it’s like, are you kidding me?
He can’t really see any of his family besides us, so he lives in this tiny little house with us and we don’t have a lot of help because of COVID-19. And so we’re kind of like all a little bit raw all the time. It’s a lot of everything. It’s just so much at once. I feel like a lot of people are in that space though, even if cancer isn’t involved, it’s just so much at once.
IR: Throughout the book, and online in your Instagram posts, you talk about the importance of getting your narrative out there and telling your story. What would you say to someone who wants to do that, but doesn’t think they have any writing skill or background and doesn’t know where to start?
RT: I don’t know that it’s a matter of having writing skill. If you don’t have the writing skill, you probably still won’t have the writing skill if you never start writing. I found my voice on Instagram and writing in that space more than I did in graduate school. Wow, that was a bold statement. I’ve never said that one out loud.
IR: I won’t tell your professors.
RT: Thank you. I’m scrambling to retract that one. I would say the two went very much hand-in-hand. I learned a lot in that online space in terms of craft, in part because it’s a limited space. And so I would write something that was three times longer than it could be, and I would have to go through and polish and polish and polish until it was short enough.
If you are interested in sharing your story and having people receive and connect with it, I don’t know that that your skill level as a writer is as important as the process of identifying for yourself what your story is and finding those memories or those thoughts. I think we’re pretty hungry for true, real life experience in storytelling.
IR: What’s next for your writing career? Have you started any new projects?
RT: I’m not sure what I’m allowed to talk about, so I would just say there’s a couple of things in the baby stages of coming to life. I’m stepping into some different genres, which is exciting. I can barely chip away at the iceberg in terms of how much more is waiting to be written and read and shared. There’s a lot of work to be done. I say work like it’s drudgery, but there’s a lot of exciting work to be done.