When the Situation Arises – Entropy Magazine

It’s been a journey, deciding how and when to publish this essay, When the Situation Arises, if at all. I don’t think I’ve written anything quite so vulnerable. But I wouldn’t be sharing it here and now if I hadn’t come to feel, deeply, that I really did want to share it, with my name and all.

Two years ago, well after I had written this, I came across a beautiful essay, The Birds: Heron by Anne Liu Kellor in Entropy Magazine. I’d never read the magazine before, but her essay haunted and charmed me, and I’ve returned to the magazine many times since, finding more and more essays and poems I love.

Somewhere along the way, I discovered Entropy’s Woven series, which features stories about domestic violence or abuse. By nature, the essays are heavy, and I’ve rarely read more than one or two on a given day. Reading them, though, has been more therapeutic than I could have guessed. Sometimes, seeing another’s pain, I feel vicariously seen. Sometimes, reading about the dark hours someone passed through reminds me, paradoxically, of just how secure and loved and safe I feel now. Mostly, I feel hopeful that with each essay, we can learn a little more about the nuances of private pain, as well as the situations that are often kept in secrecy or portrayed in broad and oversimplified strokes.

I don’t expect anyone to read this essay, and this might not be the essay for you. I kind of regret asking so many of my writing friends to read it along the way, though I can’t say how much that feedback has helped me weigh out this story as it needed to be told.

If you do read it, know that it means a lot. I hope, if you read it, this situation makes a little more sense, and, just maybe, seems a little more preventable.

Either way, thank you. I have an abundance of friends and family in my corner, and I am forever grateful for that.

Don’t Call the Cops on People for Parenting While Disabled β€” published on The Mighty

Michael’s had people call the police on him while going out with our son in public twice (yes, seriously), just because he has a visible disability… most likely because they thought that he wasn’t our sons dad or thought that he wasn’t a capable parent.

This article is about that. You can read it here.

Story Date: Honeymoon Blues and Tabernacle Road

We’ve uploaded a couple Story Dates after our first one, but so far this is my very favorite that we have ever made. I do think I’m primarily a writer at heart, but there are some great things about just recording a story and telling it verbally and visually, and I enjoy being a little bit of a jack of all trades (even if not the best, haha).

Part of why I like this one is because we got to incorporate it into our trip to St. George (many years after our honeymoon) and take some fun shots, but also I just think it’s good to normalize things like that honeymoons aren’t going to be 100% perfect and that it’s easy to set up unrealistic expectations.

Feeling a little blue for a day probably doesn’t really count as “Honeymoon Blues,” but I still think it’s worth acknowledging that it can happen at any number of different levels and is probably more common than we think. This is a great Washington Post article about general honeymoon or post-wedding blues.

That said, I hope you enjoy this story of how a blue day ended up a little brighter πŸ™‚

“Waiting for a Safety and Emissions Inspection at Jiffy Lube” published in Tar River Poetry

I’m so grateful to Luke Whisnant for publishing “Waiting for a Safety and Emissions Inspection at Jiffy Lube” in Tar River Poetry. It’s such a beautiful journal that I’ve loved for years, and it’s so exciting to appear in it.

I’ll admit that sometimes I get discouraged about the submitting process. It can be tough to get multiple rejections in a week or day, and it can be hard to go months or even years without getting an acceptance (though it certainly helps to submit more often). But I’m so grateful to those who keep encouraging me to submit, and some weeks, like when I am published on Brevity’s blog and in Tar River Poetry in the same week, I feel heard and heartened.

I realized last night, too, that both pieces published this week were written after finishing my MFA program. Honestly that means a lot to me–my MFA program was absolutely incredible and I loved it, but it can be so hard to feel like I can do this writing thing without the structure and workshops and feedback and creative atmosphere that were so abundant while I was there. So it’s nice to have a poem and an essay published from this era of writinghood.

Write on.

“Don’t Let Him Rob You Twice” published on Brevity Blog

I’ll warn you up front that this piece is about grooming behavior and sexual abuse, which I don’t talk about very often. But I do sometimes, and I’m so grateful to Brevity for publishing Don’t Let Him Rob You Twice on their blog.

Photo by MESSALA CIULLA on Pexels.com

Portraits

Last week, I did some commissioned portraits πŸ™‚ it was so fun, and the person I worked with was so nice. She gave me permission to share them and said that she loved them, which made my day!

It’s been a while since I’ve made a habit of portrait art, but I’ve been getting back in the swing and remembering just how much I love it. πŸ™‚

Introducing Story Dates :)

Last year, a month or two into the pandemic when we weren’t doing much socially, Michael and I recorded a few videos of us telling stories from our childhood or our marriage. They were some of the funnest dates I’ve had, and I’d like to keep making them every few months (they’re a lot of work, haha).

We had thought about making a private YouTube channel to share them with our friends a while back, but we decided to go ahead and make them public to anyone who wanted to watch, and uploaded the first one today. πŸ™‚

Hope you enjoy!



“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. πŸ™‚

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.