“The Nonfiction of Skin” published in Grist

Most happily, my essay The Nonfiction of Skin was published as a craft essay on Grist: A Journal of The Literary Arts this week.

Of the various things I could warn you about for this essay (length, the occasional mention of writing theory, a rather wandering approach), the most important, I think, is that this essay, as it’s title suggests, is about skin. Indeed, this essay lives up to its topic, delving into cultural taboos and medical curiosity alike. (Perhaps I am over selling the essay; consider this note a disclaimer of content rather than a promise of delivery).

I think I toe a line of propriety and possess at least some impulse towards discreteness, but, in any case, consider yourself warned. 🙂

Michael’s dysphagia: deciding to only eat soft foods

Michael and I decided to share something that has been on our minds and going on in our lives.

Earlier this week, I begged Michael to embrace a soft food diet. We’ve been building to this decision for a long time, really, and I think we both feel that it was more or less long over due.

Michael has dysphagia, and has since long before I met him, if not his whole life. This means that he has difficulty swallowing. In Michael’s case, it is common for his esophagus to spasm around a piece of food, such that it stays lodged in his throat, causing his face and sometimes his entire body to intermittently spasm with the increasing tension. These episodes sometimes last a few minutes, other times for a few hours.

For most of his life, Michael’s philosophy has been to not let CP limit his activities. This approach has served him well, helping him relish his time as a karate white-through-black belt student in his childhood, as a math and economics major, as a law student, as an attorney, as a racquetball player, as a biker, and in so many other ways.

It has also been Michael’s approach to food. Instead of telling himself to make his food softer, he tells himself that he should chew more carefully. That he should take smaller bites. That if only he could discipline his mind, his dysphagia wouldn’t be an issue. Sometimes, I’ve had that mindset too. I can’t say how many times I have prompted Michael to chew more slowly, or reacted less than sympathetically when he got food stuck because he was distracted by facebook or something.

We’ve been married for over six years now, and parents for almost five. A while back, I started asking Michael to avoid especially tough foods while eating in front of the kids. I didn’t want Jeffrey and Sam to bear the recurrent stress that Michael might get food stuck. I didn’t want them to see him coughing up and throwing up, which can often happen, or to see the spasms in his body and face that happens when food gets stuck.

Watching Michael have food stuck in his esophagus feels like watching a seizure. It feels very real and alarming. It is a crisis every time.

I’ve asked Michael to go on soft food diets before, when he gets stuck over and over again, multiple times a day for days in a row. We went on a liquid diet when he was taking the bar exam and the stress was making it almost impossible for him to eat any meal without getting stuck. We’ve done similar, though usually less strict diets every once in a while since becoming parents.

But no matter how non-stressed Michael is, food still gets stuck. He still spends his meals coughing up and gagging even when it doesn’t get stuck. I think it’s been happening more often lately, but it’s also possible that it just affects me more deeply. It does affect me more. I feel more stressed about it than I used to. I feel inadequate. I feel like my efforts to make little adjustments to our meals and to encourage Michael to chew in the six years we’ve been married haven’t made any purchase. I don’t want my kids to see Michael get stuck regularly, even mildly, and I don’t want to feel a recurring sense of jeopardy for the father of my children.

On Monday, when I brought this up with Michael, what I really said was “Michael, love. I’m done getting food stuck. I want to make a dysphagia diet part of our life. Permanently.” I was not conveying any sort of ultimatum, and I’m confident he knew that. Rather, I was conveying a sense of desperation, and a statement of critical need.

He said, “Okay. We’re done getting food stuck.”

I said, “I know it’s your experience. I know it’s your body. But it’s my experience too. Every time you get food stuck, I have an experience too, and so does anyone else around, especially the kids.”

He said, “I agree.”

I kept sharing how I felt, and Michael listened.

This week, I’ve made omelets for dinner and soft taco filling in pita bread (by far the toughest food on our new list). I’ve tried blitzing vegetables and rice into a soft, fine pilaf texture in the blender (with little success), and tried steaming-then-frying okra (with better success). In preparation for a day when we might go out more, I have looked into restaurants serving soft meals, including looking through menus of restaurants at the Salt Lake City airport.

But the other night, as I was getting a grocery order ready for pick up today, I felt an overwhelming sense of loss and grief on Michael’s behalf.

Michael is a foodie. He loves to eat good food. We’ve already discussed having occasional compromises in safe spaces, like getting poa de queijo to eat at home, slowly, with soft food on hand as a back-up. But it still hurt, to take Michael’s favorite pre-made sandwiches off the order, to imagine asking Michael to eat his pizza cut up in fine strips with a fork instead of eat it whole from the slice.

When it comes to food, no change is an easy change. Even if it makes life better. Even if it makes someone more healthy, or more safe.

Honestly, I don’t have a good point about all this. Except that something as little as food is actually huge, and that life is complicated, and that, even though Michael has asked me not to call this a sacrifice on his part, I feel that it is a sacrifice, and I feel grateful to Michael for accepting my plea.

I want to make this the best transition it can be, and hopefully make it an upgrade. I want to make a mean mac n cheese and incredible smoothies (and, if you know of any great soft-food recipes, please send them my way!). But the loss is still there. No matter how good this upgrade is, it’ll still be a hard one.

10 Tips for Disabled an Interabled Couples Considering Having Kids — up on The Mighty

Last week, The Mighty published my piece, 10 Tips for Disabled and Interabled Couples Considering Having Kids, and I’ve so appreciated the kind, engaged responses I’ve received from different people.

When Michael and I got married, we didn’t really know any interabled couples (at least very well) who had been interabled at the time they got married and decided to have children.

In my family life major, I was discouraged to find that there was almost nothing at all about written parenting with a disability–not in scholarly journals, textbooks, or just about anywhere.

Online, most of the advice I found either went along the lines of either “You can do it! There’s nothing holding you back,” or, “Why would anyone with a disability have a child? That’s just signing them up for a horrible life.” That isn’t much of an exaggeration.

Neither is true. Disability isn’t a one size fits all kind of thing, but most disabilities will have an impact on parenting. For some people, it might be better not to be a parent. For others, having a disability means nothing more than finding new ways to get things done. For many people with disabilities, parenting probably would be best with some form of extra support.

That’s not a bad thing. Most parents are not truly self-sufficient anyway. But I think that is a message that is undersold to people with disabilities–either because they are told not to be parents at all, or because they are told they can do anything just like anyone else could do it.

We get cleaning help once a week, and we get a few hours of childcare help each day. For us, that’s what helps us have a really awesome, wonderful, functioning family. And I think it’s working really well. But it would be so much harder if we didn’t have those extra supports.

That’s not all that I write about here, but these are some things that have been on my mind.


Most people actually like carbonation. Unfortunately, I don’t. (I wish I did; occasionally, I have spent hours swirling pop cans just to get some pain-free flavor).

Fortunately for me, Michael doesn’t either. Last night, we found the solution to all of our carbonation problems: blowing bubbles.

Basically, we wanted to have a date but were really exhausted, cause, y’know, we’re parents and feel like our bodies have just been on the wrong side of a car wash.

So we broke out our two favorite date night beverages–whole milk and martinelli’s apple cider–and commenced sending telepathic heart emoji’s at each other while sipping our drinks with dixie bendy straws.

But, being well trained by my toddler, and avoiding sipping too much cider at once (on account of the carbonation I don’t actually like), I started blowing bubbles in my cider, at which point Michael said, “I bet milk blows better bubbles.”

So we blew bubbles for the next forty seconds, and would have for much longer if it weren’t for the headache I was incurring from trying to compete with Michael’s milk bubbles. (Yeah. Milk bubbles annihilate cider bubbles.)

When I went back to sipping my cider, it was perfect. No cankerous carbonation pricking my tongue, just a very fine fizz. That’s all.

Practicing Gratitude

Like many, I am thinking about gratitude as Thanksgiving approaches, and trying to put more effort into practicing gratitude, with the hopes of cultivating habits that last beyond the holidays.

Gratitude just seems to me a critical element of a happy life, and social science research supports that intuition.

Practicing gratitude doesn’t necessarily cure anxiety or depression, but it improves well-being and happiness for those who do and don’t have mental illness struggles alike.According to Joshua Brown and Joel Wong, gratitude is one of the most efficient therapeutic practices–meaning, it can have significant and lasting impacts on mental health for relatively small time investments.

In addition to the many and deep effects gratitude has on emotional well-being, gratitude contributes to physical health. In one of my last family life courses, my professor talked about how gratitude improves Heart Rate Variability. Heart Rate Variability refers not only to a heart that can accelerate and calm down easily, but a heart rate that has a wider different between inhalation (faster heart rate) and exhalation (slower heart rate).

Paul J. Mills said, ““We found that those patients who kept gratitude journals for those eight weeks showed reductions in circulating levels of several important inflammatory biomarkers, as well as an increase in heart rate variability while they wrote. Improved heart rate variability is considered a measure of reduced cardiac risk,” said Mills.

“It seems that a more grateful heart is indeed a more healthy heart, and that gratitude journaling is an easy way to support cardiac health.”

Gratitude also appears to reduce cellular inflammation, as well as improve sleep.

This is true even if your life isn’t going as well as you’d like–perhaps especially then. Truly, none of us live perfect lives, and all of us have lived through periods of great trial and loss and despair. Practicing gratitude doesn’t mean saying that things aren’t hard. There have been times in my life when my list of gratitude was seemingly spare and certainly unconventional. Some of the things I have felt the most grateful for at certain times have included:

-marshmallows (which can dissolve under your tongue and give your blood sugar a small boost)

-IVs (dehydration is truly very difficult, and an IV always felt heaven sent when I needed it during pregnancy)

-the ability to binge-watch “House” all night (this got me through many a sleepless night as a teenager) or other shows in later years

And other things. I’ll stop there because I worry that I run the risk of being preachy, but I also do feel that gratitude is an asset in all manner of situations, even those terrible ones that feel unbearable. I think it is also worth saying that it is worth having a heart-to-heart with yourself in order to find those things that truly bless you, and allowing that list to be different than someone else’s.

Among many things, today I feel especially grateful for the social sciences, including the chance I had to major in Family Life, to take classes from professors who were passionate about family therapy and the social sciences, to learn how to read articles by family scholars and to have so many wonderful research projects related to mental health and family dynamics.

And of course, especially as a parent, I’m grateful for the wonderful family examples around me, as well as the treasure of online resources available, and the incredible support system that has made all the difference for Michael and I as we’ve started to get the hang of this parenting thing. Without the support we have, all of my study would have meant very little in terms of our ability to have a happy, healthy family.

On being judged for holding my kid down for his flu shot

I’m pretty sure the guy who gave my four year old his shot at the drive-thru flu shot place was low key judging me after I climbed into the backseat to hold Jeffrey’s arms and legs down, and when it was my turn he turned to Jeffrey and said, “Do you want to come hold Alizabeth down while she gets her shot?” (to which Jeffrey said, no.)

I kinda get it, and I definitely appreciate his helping make Jeffrey comfortable by asking him who his favorite super hero was and getting Jeffrey talking about batman. I really appreciate that, and I’d rather take a little bit of judgement along with a gentle, kid-friendly approach than no judgment and a no-nonsense attitude.

But here’s the thing. There is no easy way to handle something like shots, especially for a four year old who is old enough to understand what’s happening but young enough to not really appreciate the reasons why.

Personally, I always tell Jeffrey if something unpleasant is coming up, whether that is getting x-rays at the dentist or getting a shot. I let him know earlier in the day and we have discussions about dentist visits and doctor visits and shots as they come up on Daniel Tiger or Curious George or other times. Jeffrey knew we were going to get a shot, that it might hurt a little, and that afterward we’d get some food together. He didn’t want to come and told me as much, and I said, I know. You don’t have to want to come. I’ll try my best to make it quick and so that it only hurts a little, but it might still hurt. I know you don’t want a shot, but the shot is important because it can help keep you from getting so sick that you need to go to the hospital.

So we talked about it, and I knew he wasn’t down for it, and I was pretty sure that he would continue to thrash in his car seat indefinitely had I not climbed back to hold his arms and legs. I’ve sat in Doctor’s offices where I have heard a child screaming for a good half hour or so, not allowing anyone to give them a shot. Personally, I think that is more stressful than the actual shot, even if a parent a child trusts is holding them down. Certainly, I would rather be the one to restrain one of my kids than a doctor; my kids trust me, and if I’m the one holding them back as I tell them that I love them, I think they feel a lot safer than if I were to say something like, I wish you didn’t have to get a shot either but the doctor says you have to!

But even then, there is no easy way. Every parent tries to make it the best experience they can. We had also tried giving Jeffrey Michael’s phone to play a game on. He knew we would get food afterwards. There just is no easy way to make a child go through pain, whether for vaccines or any number of other medical procedures, even if it is brief and even if it is for an important reason.

That’s all.

My Favorite Wheelchair Dances

Shows like America’s Got Talent have long been my guilty pleasures–so, combine that search history with the many interabled couple and disability channels I follow, and the YouTube algorithms brought me the gift of wheelchair dancing.

Marisa Hamamoto & Piotr Iwanicki

Two of these dances come from Infinite Flow, an inclusive dance company in California. When I went to their main page, I also saw that they have a virtual Film Premier of Scoops of Inclusion this Saturday that you can register for on their website, which spurred me to write this post. I hope I can watch it after the allotted time (12 p.m. EST). I’ve loved all of their videos, and thought I’d share a few here (as well as some other wheelchair dancers).

Probably my favorite video, so far, has been of a dance called “Pliancy,” danced by Marisa Hamamoto and Piotr Iwanicki, and choreographed by Phillip Chbeeb. Marisa Hamamaoto founded Infinite Flow after having been temporarily paralyzed by a stroke, and Piotr Iwanicki has Spina Bifida. And I also had the added bonus of discovering Bishop Briggs for the first time, whose music I’ve also been binge listening to since. You can watch it here:

Florent & Justin

This dance originally appeared on France’s Got Talent, but I quite like the extended edition. From what I read on a Talent Recap, the story begins with a young man trying to befriend a man in a wheelchair, but the man is resistant. While that may well be the case, I thought this summary didn’t really do justice to the complexity of choreography and atmosphere, and had the potentially negative effect of stereotyping the disabled man as being generally curmudgeonly. I thought, rather, that the “young man” was quite accurately portrayed as being somewhat infantalizing and somewhat disrespectful in his initial attempts at initiating a friendship, and that the disabled man’s reticence was rather fair. But I also love seeing the friendship unfold throughout the dance.

Gabe Adams, Mia Schaikewitz & Marisa Hamamoto

This one (also from Infinite Flow) is a wheelchair dance, but it is also a Tetra-Amelia dance–Gabe Adams has no arms or legs. All three dancers have such good synchronicity and chemistry, and the levels work so beautifully. I thought it was rather delightful.

Julius jun obero & Rhea Marquez

I’m not sure which “Got Talent” this show is from, but the act is gorgeous, and you can find them on Facebook.

Infinite Flow Ensemble Collaboration

For this one, I’m not entirely sure who all is part of Infinite Flow and who all collaborated with them (or indeed if the dancers were the collaborators), but I rather love the ensemble.

Marc Lafleur & Dmitry Kim

Also from Infinite Flow, these two just have a really beautiful, moving chemistry, and this video also shows dancing in a wheelchair as well as dancing with a prosthetic.

Last, I thought I’d share the first wheelchair dance video I came across, which is a rather cute rendering of a Homecoming Dance proposal:

For now, that’s all. I hope you found them as gorgeous and fun and awesome as I did!

Sonja Livingston’s “Nota Bene: On the Bodies of Poor Boys”

One of my favorite essays from 2019 was Nota Bene: On the Bodies of Poor Boys by Sonja Livingston. It’s a short read, but dense, lovely, rhythmic, and heart pinching. She’s also one of my favorite writers.

Here’s her author bio:

SONJA LIVINGSTON is the author of four books of nonfiction, including her latest collection of lyric essays, The Virgin of Prince Street: Expeditions into Devotion, and, Ghostbread, an award-winning memoir of urban and rural child poverty. Her work is widely anthologized and taught in creative writing and social justice classes around the country. Sonja teaches in the MFA program at Virginia Commonwealth University.

Sonja Livingston’s Essay Collection, The Virgin of Prince Street.

I also think that her essay is a helpful model, and I’ve put together an exercise in reference it.

Writing Exercise:

Tell a story about a family member or a friend or yourself, but identify them by a feature of their demographic or experience rather than by name or their personal relationship to you. Examples could be “Midwestern fathers” or “asthmatic children” (be sensitive to how those of any given demographic want to be described). Connect that person to broader themes and conditions. Anticipate the possibility of overgeneralizing, perhaps through internal contradiction (i.e., “Sick cats swallow their medicine loudly, fitfully. Except when they don’t.”), or assuming an exaggerated, unreliable persona (“if someone tells you that you’re wrong, you can dismiss them easily. They don’t know what they’re talking about.”) 

This kind of exercise could easily hit the wrong note, however, so it might help to do a sensitivity check with those the essay represents.

“Kid” published in Iron Horse Literary Review

One of my poems, “Kid,” had been selected as one of the winners in the AWP Intro Journals competition, and earlier this year it was published in Iron Horse Literary Review. They didn’t have my address at first so it took a while for it to come, but it’s here now! Everything I’ve read so far has been amazing, and I’m excited to keep reading through.

Also, I think this came out in February, and I chuckled a little when I saw “Welcome 2020” after the foreword.

Dear hive mind: I’m getting a phobia of sneezing

So for about four years, since sometime after Jeffrey was born, I’ve had a clap of blinding pain right above my right hip when I sneeze or cough, unless I curl up a bit in advance. Or if I sneeze and the pain comes, curling up afterwards usually helps the pain subside. 

This could sound like a hernia, but there is no corresponding bulge, and, in the past few months, I’ve also experienced the same thing in the exact same spot on the opposite side. The pain is generally all or nothing, except for the time shortly after when it is subsiding.
I’ve also started to have the pain on standing up quickly which is frustrating. On Sunday, I stood up and the pain was searing and I immediately curled up in a ball on the floor while it ebbed and flowed. So it’s becoming more inconvenient.

I saw a doctor yesterday who thought it was not a hernia and suggested I have an abdominal ultrasound, though he warned me that such ultrasounds often look completely normal. Well, on scheduling it I was told the ultrasound would cost at least a few hundred dollars out of pocket, so it’s a no from me.

Has anyone experienced something similar, either after a C-section/pregnancy or independently?

If so, let me know!