Posts - Imperfections of the Human State

Dance, Baby, Dance

On October 30, 2025

The year before I had symptoms of ALS, I tried to teach myself to dance. I’ve written earlier about my inability to sing. In addition to that deficit, I have no rhythm. I clap off beat. I’m very stiff in my shoulders, so I can’t do the thing with relaxing my shoulders like people who have moves do.

I took ballroom dancing lessons over thirty years ago with my boyfriend at the time. I love ballroom dancing, because it has steps. No improvising required, plus stiff shoulders are not a disadvantage in many ballroom dances. I learned the foxtrot (slow, slow, quick, quick), the rumba (quick, quick, slow), the waltz (One, two, three, One, two, three), and the swing (slow, slow, quick, quick – but not the same direction or tempo as the foxtrot). Moreover, I’m great at following if my partner is a good leader. Or so I thought.

When I went to my 25th college reunion, I planned that I would go to the swing dance club’s event. The swing dance club wasn’t there in my day. I told myself that if I made a fool of myself, it didn’t matter, because I would never see those people again. (All of my college friends were in different years from me, so they weren’t there.)

It was good that I had low expectations of myself. I participated in the lesson offered prior to the dance, and I saw that this group started with the rock back (quick, quick) steps, which was different from how I learned. After the lesson, a recent graduate asked me if I wanted to dance. I warned him that it had been a long time since I had danced. We got off to a good start. Then he made the mistake of saying, “you remember!” That was all it took to throw me off. I didn’t get back the rhythm for the rest of the song. When the same guy was looking for someone to dance with later on, I offered to dance, and he just walked away.

Someone else asked me to dance, and I reluctantly accepted. I was a mess. After the song ended, I asked him if he wanted to continue. He backed away from me, waving both hands, as if warding me away. I spent the rest of the event having an enjoyable conversation with the parents of a current graduate.

Later that spring I was at a bar mitzvah reception with my kids, and the last song the deejay played was Pete Townshend’s Let My Love Open the Door. I danced with Max, and I hummed it all the way home. That song brings me joy to this day, because whenever I hear it, I feel the same giddiness I felt when I danced on that day.

That night I embarked on a quest to develop rhythm. I somehow found a website called I Hate to Dance, which was perfect. Its intended audience is men who dread dancing, but it’s for anyone who is rhythmically challenged. The website starts with the basics: feeling the beat, clapping on the up beat, etc. It goes on to teach how to do several types of dances that one is likely to need on various occasions. Most notable for me is the fact that the website teaches a survival tip for any dance: a simple step to the side, feet together, and repeat to the other side, all on the beat. I practiced over and over again. I also taught Max and his best friend how to do the Electric Slide and the Macarena. We had so much fun!

Now my arms and legs are paralyzed. My dancing days are behind me, but I’m still using the I Hate Dancing website, and I dance in my head whenever I listen to my dancing playlist. I’m going to be ready for the great beyond or my next life. As my favorite choreographer, Bob Fosse, said, “It’s showtime!”

Teaching Writing

By Jessie

On September 29, 2025

In living with ALS, loss, teaching

My friend Julia has been reading one of my teaching journals aloud to me, because I wanted to refresh my memory about that particular year. I wrote a reflective journal most days for every year I was in the classroom. I used lesson plan books, which have boxes with lines for six periods, which is how most secondary schools have their schedules, six periods per day. My writing had to be tiny to fit into the boxes. Julia has to use the magnifying glass and the flashlight on her phone.

I would never be able to read it on my own. I even have trouble reading things on my device, because since my ALS has become advanced, I have trouble reading words on the left side of the screen. That’s why I prefer audio books and podcasts.

But I digress. The second half of the journal, meaning the second half of the year, focused on writing. For more years than I would like to admit, I thought the way to teach writing to a whole class–as opposed to one student at a time– was to give everyone a graphic organizer, like the one below for argumentative writing:

I may have modeled filling out the graphic organizer. As you can imagine, it didn’t work very well for most students. The ones who grasped the concept just wanted to write, and those who didn’t, gained no help from the graphic organizer. I always ended up making many comments on the finished drafts, and the students would never transfer my comments to subsequent writing assignments.

Two things happened to change my method of teaching writing. One was when I transferred to the Highline School District. There I had a literacy coach, Mary Edwards, who vastly improved my practice in many ways, including introducing me to the “green book,”. That’s what we called a book published by Teacher’s College, Columbia University, that was filled with detailed scripted lesson plans with accompanying resources. With Mary’s help, I implemented an editorial writing unit, and started with having the kids read a bunch of editorials, and I modeled identifying various techniques that the writers used. I conferred with each student about what they were trying to do. This process was much more productive than graphic organizers.

The second thing that pushed me to change my teaching of writing was the book Study Driven: A Framework for Planning Units of Study in the Writing Workshop by Katie Wood Ray. The premise of Study Driven is that students need immersion in the type of the writing that they are going to do. The examples need to be published pieces.

I realized I already knew this from my own writing. When I wrote an article for Educational Leadership about my experience teaching for the first time in a high needs school, I first read several published articles about teaching.

So, from then on, I structured writing units with immersion as the first step. When my ninth graders wrote their own Odysseys, we went back and studied how Homer began the Odyssey. When my eighth graders wrote biographies of someone in their family, first we read short biographies (picture books) of famous people. It made a vast difference in the quality of their writing.

A few years later, another book revolutionized my writing instruction. It was An Ethic of Excellence, by Ron Berger. Berger describes a process that begins with students familiarizing themselves with the qualities of excellence in whatever they are going to make. Then the students do a first draft of the project, participate in feedback groups (after extensive modeling and whole class practice), and then repeat those steps until the student is satisfied that they have achieved excellence. (If you would like to see an inspiring example of this process, watch Austin’s Butterfly.)

Joshua, my teaching partner at Highline Big Picture School, and I implemented that process with nearly everything the kids worked on. With writing, it was a perfect fit with what I was already doing with immersion. I had extensive experience with teaching how to frame feedback from my years as a facilitator of professional learning groups with other teachers. The immersion/identifying qualities of excellence and the multiple rounds of drafting and feedback, together with conferring with more experienced writers – either me or one of the volunteers I often had for big writing projects – was magical in improving student writing. Beyond that, it fostered a culture of multiple drafts. After all, that’s what professional writers do.

I’m fortunate that I enjoy writing, because it’s the only creative endeavor I can do since I lost the use of my hands. When I decided to create a blog, I first read blogs from other people living with ALS. I learned that their blogs typically include a post about their diagnosis process, so I wrote one early on. I always write multiple drafts, and Barry gives me feedback until I’m satisfied that the post is ready to publish. The one thing I can no longer do regarding writing is teach. I miss it very much.

Summer

By Jessie

On August 9, 2025

In living with ALS

I love, love, love summer. I was on an academic calendar from the ages of five to 49, and I still feel the rhythms of that cycle. Summer means freedom and decadence. The freedom and decadence to sleep as late as I want on weekdays. The freedom and decadence to do hot yoga three times a week or more. The freedom and decadence to go to the farmers market and buy berries and peaches every week. The freedom and decadence to gorge on those berries and peaches. The freedom and decadence to go to the up u-pick blueberry farm during the week with my kids. The freedom and decadence of not having to respond to the endless barrage of student work.

Nowadays summer freedom and decadence means I can shed my blankets. I can’t regulate my temperature, since I have no muscles and very little fat, and I don’t move around. I use an electric blanket on top of a regular blanket for three-quarters of the year. No one ever sees my outfits. When it’s in the high 70s, I get to put away the electric blanket. When it’s in the 80s the regular blanket goes on my legs only, and that is only because it stays cool in my house (mature trees, nature’s air conditioner). Outside, I don’t need a blanket at all.

Along with feeling the rhythm of the academic cycle comes the dread of August 1st. As long as it’s July, teachers have a buffer of August before we have to turn our attention to the next school year. And the last week of August is always reserved for mandatory school district training, meetings, and kick off events.

I still feel that dread of August, although I have been retired for seven years. The good news is that when I was teaching, the freedom and decadence would become too much by the time I had to go back to work. The brutal thing was getting up early again. Now that I’m retired, I get to sleep as late as I want. ALS silver lining number five! ¹

1 If you’re curious, here are the other silver linings:

Falling in love with Barry.
Learning that strangers will help me if I fall.
Learning that friends will help me with all kinds of things.
Being able to be home with my kids.
Sleeping as late as I want.
Not having to renew my National Board Teacher Certification for the second time.
Not having to teach during the pandemic

Caregivers

By Jessie

On July 14, 2025

In living with ALS

I have had more caregivers than I can remember over the past six years. Some were from word of mouth. Others were from agencies. I preferred the caregivers who were from word of mouth in general. They were better, for the most part, and agencies cost more.

There was a time when I had as many as five different caregivers a week, depending on the day of the week and the time of day. Now I’m down to two: Barry, my husband, and Ateka, the caregiver who has been with me for six years. It no longer makes sense to bring on anyone new, because my needs are so complex that Barry would have to spend so much time training them, that it’s not worth it. It’s exhausting for me too. The downside is that whenever Ateka is sick or out of town, Barry gets no respite from caring for me. And Barry can’t travel for more than a long weekend, since it’s hard for Ateka to cover 24 hours for more than a few days.

I found Ateka on a website called CareLinx. It’s like a dating app for caregivers and care seekers. It is a great resource, and I have found several caregivers that way, but it takes a big cut of the caregiver’s pay. And it doesn’t give benefits, since the caregivers aren’t employees. I offered to pay for Ateka’s medical insurance, but it resulted in unanticipated problems on her end. Yet another way in which the United States fails its citizens.

I have learned from Ateka that Ethiopia is the only country in Africa that was never colonized. I also have learned through observation that most of the caregivers in my area who work for agencies come from Kenya. Kenya was a British colony, so most people there speak, read, and write English. One must be literate in English in order to work for an agency. That is why Ateka can’t work for an agency and can’t get the associated benefits. I have learned a lot about the world and our society from my caregivers.

In the way that they care for me, Barry is classical music, and Ateka is jazz. Barry deals with the enormous number of steps every time I transition from one activity to another by keeping a list in his head, and heaven forbid he gets interrupted. If I want to introduce something new or change something, I have to bring it up well before the transition time, and I have to explain the purpose of my request.

I often wish I didn’t have to explain it, that Barry would grant my request automatically. But that’s not the deal. We’re a team, and Barry’s brain doesn’t work that way anyway. If I forget and issue a request at bedtime, he reminds me that it’s in my interest that he does it this way, because it’s the only way he can “remember all 37 things.”

Ateka has a loose routine, but she improvises. She riffs. I have to be patient and wait until she is completely done, before I indicate that she has forgotten something. More often than not, she hasn’t. Being patient is hard for me, and in those moments I appreciate Barry’s classical music method. I know immediately if he has forgotten something, because he follows the same pattern every time. He tries to play it off, as if he meant to do things out of order, but I know the truth.

Luckily, neither one of them fears change in the routine. When I share a request or something bothersome with Ateka, she improvises on the spot. She feels it out and tries things, and more often than not comes up with something that will help. When I share a request or something bothersome with Barry, he takes it away and thinks about it. He composes and orchestrates, and comes back with something that more often than not will help.

Aside from their different care methods, Ateka and Barry have different strengths. If I had my druthers, I would have two caregivers with the strengths of each of them. But since I can’t, I try to focus on the things I appreciate about Barry’s and Ateka’s individual ways of caring for me. And that they love me.

Welcome to My Eye Gaze World

By Jessie

On May 29, 2025

In living with ALS

I took it for granted that you all know that I use eye gaze technology (I type with my eyes) to communicate in all forms: speaking, texting, and writing everything from emails to this blog post. That is, I took it for granted until my sister, Sephrah, said something that made me realize that only the people who have seen me within the past four years know my reality. In honor of ALS Awareness Month, I will now attempt to show you what it’s like to rely on eye gaze technology.

I have to type with my eyes, because I’m completely paralyzed except for a little bit of movement in my legs. I can still feel everything, which makes itches a lot of fun.

Before I continue, I want to clarify that I didn’t get ALS and immediately go to eye gaze. First, I was still able to type with my hands. As my right fingers became weaker, I did a modified version of touch typing with just my left hand. That lasted for about a year. When my hands got too weak to type, I used a voice to text software, which worked well, but I couldn’t use it around other people, both because the software wouldn’t work well with ambient noise, and because I was still teaching, and had to write confidential information about students.

My next phase started when ALS affected my speech so much that the software wouldn’t work. Jackie, the tech specialist from the ALS Association, came to my house and attached a camera to my laptop and put a silver dot in the corner of my glasses. This system let me manipulate the cursor by moving my head around to select the letter or icon I wanted, and then click by waiting for a few seconds. It was my favorite accommodation. It was fast, and the process led to few mistakes.

Eventually my neck got too weak for this system. Enter a tobii dynavox touch tablet with built-in eye gaze technology and a giant clicker button, which I held on my lap. I would use my eyes to select what I wanted, and press the button on my lap the way most people double click a mouse. Eventually, I couldn’t do the button anymore. I’m 100% eye gaze now.

Every time someone rolls me up to my device, the first thing we have to do is track my eyes. That means we line up the machine with my eyes. Here’s what the tracking screen looks like.

The white circles are my eyes and they have to be centered, and the white arrow has to be level with the white eyes. Distance, height, angle…it is harder than it looks, because if it’s not just so, one or both eyes will disappear, and the person who is helping me has to move the device around until it gets fixed. The lights on the bottom are what track my eyes. If they are blocked, I can’t do anything.

Next, I calibrate my eyes, which synchronizes my eyes with the machine – ideally. I calibrate by following circles around to nine points on the screen. See below for what the end result should look like. If the tracking is not perfect or my eyes are tired or watering, my eyes won’t be synchronized, and I will have trouble typing or doing anything with the machine. This usually means starting over again from the top with tracking and calibration.

This is the keyboard (see below) I use to type what I want to say and I often type other things and cut and paste into other documents, because it’s faster than the windows keyboard. I wanted to type “…I make mistakes all the time.”, but this is what I actually typed. That’s why I don’t like people reading what I’m typing over my shoulder. I make a lot of mistakes.

Notice that the question mark and other punctuation marks or numerals are not on this screen. For them, I have to switch to other screens. However, my biggest complaint about this keyboard is that there is no caps lock anywhere. The only way to capitalize every letter in a word or acronym is to do it one letter at a time and hope that I don’t select the wrong letter on my way. Imagine selecting whatever you look at. That’s my world.

It’s maddening when there is a video or animation on part of a website I’m looking at, because it is impossible for me to look away. You know the advertisements on YouTube that you can skip after four seconds? It takes me much longer than four seconds to skip the ads, because I can’t stop watching them. It’s like telling myself not to look at a car accident on the freeway; I can’t help but look anyway.

One more major complaint about eye gaze technology. No one has figured out how to get it to work with sunlight, so I can’t use it outside or in the car. That is the reason I don’t like to spend a lot of time outside, which is unfortunate, because I love nature. I need someone to create a collapsible awning, like the ones on baby strollers, to extend over my head and the device, shielding us from the sun.

I used to think that eye gaze technology had existed since the 1960s, because Stephen Hawking used it, but no. He used a muscle in his cheek to do all of his communication, including writing books! I don’t have any muscles in my face that I can control to communicate. I recently found out from Jason Becker, who has been living with ALS for 30 years, that 20 years ago, eye gaze technology was terrible. For all the complaining I do about my device, I am lucky to have access to the assistive technology available today. If I had been diagnosed even just 5 or 10 years earlier, I would be silent by comparison and certainly wouldn’t be able to write.

Mrs. Prezioso and Why I Loved Geometry

By Jessie

On April 28, 2025

In living with ALS, teachers

Senator Elizabeth Warren is collecting stories from Americans: “If you have a favorite memory from public school, you could only go to school because you got financial aid, or you have any story that can remind people why we need to save these programs [of the Department of Education] share it now.” I shared an abbreviated version of my Tribute to Miss Brooks, and now I’m sharing with you my memories of another dear teacher: Mrs. Prezioso, my ninth grade geometry teacher. Senator Warren is reading some of the stories from the Senate floor, with the author’s permission. I invite you to send her your story.

On the first day of geometry class, Mrs. Prezioso gave each of us an index card and invited us to write on it our feelings and experiences with math. I wrote that I didn’t like it and sometimes feared it. No one was more shocked than I, when geometry quickly became my favorite class in ninth grade.

I loved solving geometric proofs. They totally fit my abstract-sequential way of processing information and my affinity for logic. I remember the time I stared forever at a proof we had for homework, and finally saw the solution. It took three steps. After someone asked about it the next day, Mrs. Prezioso took everyone through her solution, which took about 25 steps. I waited silently for her to finish. Then I revealed my vastly more efficient solution. Mrs. Prezioso and my classmates were amazed. That sealed my fate as the “best” geometry mind and the teacher’s pet.

I was definitely the teacher’s pet. It was mutual. But what I remember most about Mrs . Prezioso is the rapport she had with all of us. She told us that she felt so comfortable with us that she did things that she would not do with other classes. She read The Missing Piece, by Shel Silverstein, to us, because she had used it for an exam in her Master’s program. She brought in the film of her on the television show Candid Camera when she was little. In order to make it clearer for confused students, and then because we got a kick out of it, she would stand in the front of the room and say, “I’m an isosceles triangle,” while holding her arms at angles to her sides, and then turn around to demonstrate that it was the same on both sides.

Mrs. Prezioso also shared with us that her son, who was in graduate school to be a psychologist, thought she was crazy because she loved math. Hearing that inspired me to create a sign using my family’s Macintosh computer. I drew a picture of Mrs. Prezioso, and above that it said MISSING. Below the picture, I wrote, “ Escaped from the institution where she was committed by her family because of her love for math. Be careful. She is disguised as an isosceles triangle.” I taped it to the chalkboard in front of the room before she got there. She took a really long time to turn around, and all of us were snickering and trying very hard not to bust out in guffaws. When Mrs. Prezioso finally turned around, she read the sign and laughed. I don’t remember if we did any geometry for the rest of the class. I was too busy beaming. (See below for the actual sign, a little different from how I remembered it.)

I remained in close contact with Mrs. Prezioso for the next 27 years. The summer before we went to college, Mrs. Prezioso took three of us who had stayed in touch with her to lunch. I continued to have lunch with Mrs. Prezioso whenever I was in town. I always looked forward to seeing her and catching up. Even when we corresponded by email, it was very special to see her in person, especially the time I brought baby Ethan to meet her. By then I called her by her first name, Arlene.

Mrs. Prezioso had to retire because of health problems. Her family suspected that her breathing problems were due to her years of exposure to black mold in the school following the remodel, which happened long after I graduated.

It got increasingly difficult to get together, because Mrs. Prezioso suffered from emphysema for at least the last 15 years of her life. More than once she had to cancel our get together, because she wasn’t up to it. She was hospitalized and almost died three times. Her husband spent those years caring for her. We said he was a saint, because of the way he devoted himself to her care.

We kept in touch until her death in 2012, 27 years after I was in her class. As much as she meant to me, there was no way I could have known that she would also offer me a model for living with a degenerative, fatal illness. I have often thought of Mrs. Prezioso since receiving my ALS diagnosis.

I really didn’t understand how she could be too tired to get together. Or how it could take her three days to recover from attending a function. Or how she could be happy just having her husband push her in her wheelchair around the grocery store. Now I do.

On our second date, I told Barry that I was not looking for a caregiver. I meant it, but I got one nonetheless. With Barry, I got my own saint. And I do what I can to be grateful for the small things that bring me joy.

Mrs. Prezioso with me in 1993.

The sign, courtesy of Mr. Prezioso . Spelling was never my forte.

On Language and Insomnia

By Jessie

On April 8, 2025

In living with ALS

I have had insomnia for years. I fall asleep with no problem, but I wake up and stay awake potentially for hours. If nothing distracts me, my thoughts will spin, and I will never fall asleep. Since I can’t get up and do something, my solution is to listen to podcasts.

One of my favorite podcasts is The History of English Podcast, by Kevin Stroud. It’s a fascinating, chronological history of English, from its Indo-European roots through modern English. There are 182 one-hour+ episodes so far, and I have listened to all of them many, many times. This is a great podcast to go to sleep to, because it’s interesting enough that my thoughts don’t wander, but not a nail biter that keeps me up to hear how the episode ends. Plus, each episode can stand on its own, so I don’t wake up and need to scroll to the top because I can’t follow what’s going on.

I especially love episode 165: ” Glamorous Grammar.” Grammar has always been one of my strengths, to the fury of my younger sister, whom I mercilessly corrected every chance I got.

Beginning in the 1580s, English scholars took an interest in English grammar. Prior to that, they focused only on Latin grammar. Here’s where I get giddy. The English scholars applied the rules of Latin grammar to English! The rule about not ending a sentence with a preposition? That’s because in Latin one can’t do it. I can verify it, having taken four years of high school Latin. I can really get behind eliminating that convention from English. It’s terribly awkward to find a way not to end a sentence with a preposition when the sentence begs to end with something like up, on, or under.

The convention I am having trouble giving up is not to split infinitives. It’s true that it’s impossible to split infinitives in Latin, because in Latin the infinitive is one word: amare, to love; cogitare, to think; esse, to be. If it’s impossible to split infinitives in Latin, why did the scholars of the 16th century even think of splitting infinitives?! I know that I don’t need to stop splitting infinitives, but I like to be right. If people are free to split Infinitives, the whole English speaking and writing world is going to be in chaos. On the other hand, if I have learned anything from the podcast, it is that the English language has endured many periods of chaos and survived.

A Tribute to Miss Brooks

By Jessie

On January 23, 2025

In teachers

Mrs. Burns, my kindergarten teacher, clearly loved my best friend, while she did nothing to hide her disdain for me. One day she caught me sticking my tongue out at a classmate in response to an insult. Her idea of teaching me not to do that was to make me stand at her desk and stick my tongue out at her. If I had had thicker skin, I would have enjoyed it, but I cried in humiliation the whole time.

According to my mother, when I came home on the last day of kindergarten, I declared, “Mrs. Burns may know how to teach, but she doesn’t know how to be nice and she doesn’t know how to take care of children.” Then my eyes welled up and I said, “I wanted to like her.”

Intending to avoid another Mrs. Burns, my mother requested that I have Miss Brooks, who had a reputation as an excellent first grade teacher. The administration complied.

I loved Miss Brooks. She was warm and kind, everything Mrs. Burns wasn’t. Whenever we left the classroom, we walked in a single file line, as is the way of elementary students everywhere. Miss Brooks walked next to the line, and always stuck her hand out for the student next to her to hold. I felt special whenever she chose me.

Miss Brooks didn’t play favorites. There were some boys in our class who were a handful, but I don’t remember her treating them differently from the more compliant kids. Don’t get me wrong. Miss Brooks ran a tight ship. But she was never mean.

All of Miss Brooks’s students knew that she loved mice. She had mouse stuffed animals, mouse stickers, and other mice themed things at her desk. We liked knowing something personal about our teacher. We also knew that she was Irish, because she taught us an Irish jig.

I will never forget the time when I was in third grade, (a big kid), and I was walking by myself from one end of the campus back to the third grade building. Miss Brooks was walking ahead of me, without her class. She turned around, saw me, stopped, and stuck her hand out. I held her hand the whole way back and told her about my summer, feeling special the whole time.

The year I started fourth grade, Miss Brooks moved to Rhode Island to take a job as the principal of an elementary school. I wrote to her, and she always wrote back. One time I sent her a gold mouse pin that I got from the prize bin in my dentist’s office. The mouse wore a red dress. Obviously it couldn’t have been high quality having come from my dentist’s prize bin, but you wouldn’t know that from Miss Brooks’s response. She thanked me for the pin and told me that she wore it on her red turtleneck on the first day at her new school. After I read that, I had the biggest grin for hours.

Another time, my friend Alicia and I wrote letters to her and included some cat stickers. I remember that in her reply, Miss Brooks wrote that she would keep the cat stickers away from her “mouse ones.”

When I moved to Rhode Island for graduate school I thought I would look up Miss Brooks. I spent hours on the phone with the receptionist for the principals association. I only knew the year she became a principal. I didn’t know the name of her school. The receptionist could not find her. I figured she got married and changed her name. Or maybe she moved to a different state.

I was crushed. Still am. Maybe it’s because I became a teacher that I wanted so much to reconnect with Miss Brooks. To tell her how she made me feel, because over the years, it has brought me so much joy whenever my former students have told me that I had a positive effect on them.

When I think about Miss Brooks now, I recall a passage in Jewish liturgy about getting to the promised land. It states, “…there is no way to get from here to there, except by joining hands, marching together.”

To read an earlier post about Miss Brooks, click here.

Mostly Food; Sometimes Drinks

By Jessie

On December 7, 2024

In living with ALS

I chose to have a feeding tube inserted in 2019 in anticipation of the day I would no longer be able to swallow comfortably or effectively. I have not eaten food by mouth since early 2021. At first I didn’t miss eating, because it was so unpleasant. I would gag and choke. My last meal was oatmeal.

I remember early in my tenure of not eating, I read in the blog of another person with ALS that she had no appetite but craved the texture of food. At the time, I didn’t get it. I had an appetite, but didn’t crave the texture of food. Now I get it. I long for the delightfully hard outside and chewy inside of a New York bagel. Better still if it comes with lox and cream cheese from Russ and Daughters. My mouth waters at the thought of the thinly sliced, silky cured salmon with a hint of saltiness, paired perfectly with double-whipped cream cheese. Heaven.

As I indulge myself reminiscing about the food I miss most, I have to include my favorite dishes of all time. First, Nime Chow ( Cambodian fresh spring rolls). If you’re familiar with Thai fresh spring rolls, these are similar. The greatest difference is the dipping sauce. Cambodians don’t use peanut sauce. Instead, they make a sauce out of white vinegar, sugar, lime juice, hot water, and fish sauce, with chopped peanuts on top. The sauce, spooned onto each bite, is what makes the experience. It’s thin, more like a dressing, and tangy, sweet, and salty. Again, my mouth waters imagining it. The other of my all-time favorite dishes is Bee Bong, a Cambodian noodle dish with thin rice noodles in coconut milk and baby corn, plus other vegetables. The warm rice noodles in warm coconut milk make it the ultimate comfort food. Both Nime Chow and Bee Bong are available at my all-time favorite restaurant: Apsara in Providence, Rhode Island.

Next, I desperately miss my favorite breakfast: granola with yogurt and blueberries. The blueberries were preferably fresh, either from the farmers’ market or from the farm where the boys and I picked our own. I miss the texture of the crunchy granola and nuts, along with the creamy, plain yogurt and plump blueberries. I have to credit my dad for introducing me to this breakfast. He ate it nearly every morning of his adult life.

Lastly, I miss whatever my family is eating. I have learned that the cravings for whatever they are eating are not terrible if I have a full stomach. But I still long to join them.

Sometimes I get a wicked craving for lemonade or ginger ale. Or just fresh, cold water.

It is hard to get my head around the fact that I will never eat food or drink anything again. I know there are people who would not want to live such a life, but I am not one of them. I want to continue living even with all of these losses. I’m having too much fun and I’m not done with all of the things I want to do. Besides, I eat in my dreams.

A Dressy Jessie Coda

By Jessie

On October 27, 2024

In family, living with ALS, loss

For posterity (and for everyone who missed it on Facebook), I want to record the two updates here to that story.

I notified subscribers that I had added a picture of Max’s Origami Yoda finger puppet, as well as the recording of my pitch to The Moth, to the Dressy Jessie post. Then, unbeknownst to me, my friend David Lasky, artist and graphic novelist, sent my Dressy Jessie story to his friend, TOM ANGLEBURGER, author of the Origami Yoda series. Tom emailed me a note, appreciating Max’s Jedi wisdom and attached two drawings!!! Here are the drawings:

Dwight, the character who brings the Origami Yoda finger puppet to school, with the finger puppet.

The Origami Yoda finger puppet.

In my reply, I asked him a question about the end of the series that I was certain everyone asks. Turns out that no one has asked that question, and he wrote a generously long response. It’s great when a famous person turns out to be a mensch.

But wait, there’s more. A couple of weeks after getting the emails from Tom (we’re on a first name basis now) I received this surprise from Jay Lender, creator of the original Dressy Jessie!!! Here is the cover and two of the outfits: The Laugher and Cyber Babe.

Benefits to losing Dressy Jessie there are.