Tag: living with ALS Page 1 of 3

Eulogy Part II

On June 30, 2026

In family, living with ALS, loss, teachers, teaching

by Barry Lasky on 6/26/26

The weird part is that I actually had the opportunity to share a draft of this with Jess. She was busy one evening working on her funeral arrangements and I told her, “Honestly, I don’t know if you want to know this or not but I started working on a eulogy for you.” She said, “I want to hear it now”. I double checked, “Are you sure?”. And she responded, “Barry, I’m an extrovert. You don’t think I want to know all the fabulous things you’re going to say about me?”

So oddly enough, the following is Jessie approved…

When Jess and I first met, when we first starting dating, we divided our time into two broad categories…”Plan A” and “Plan B”. Plan B was everything you might expect. Going out to dinner or to see a movie or some live music. Plan B was being out and about in public having fun and getting to know one another.

Plan A was time alone together, just enjoying each other’s company. As Rabbi Aaron (Meyer) and Rabbi Rachel (Nussbaum) said when they officiated at our wedding, it was obvious to us and obvious to many folks around us that Jessie and I had very much found in each other “our person”. And so Plan A was the plan more often than not. Our preferred plan was just to be together, just to spend time with our person.

Well, we soon realized we had to add a third category. Often we would be out and about in public but sharing our respective Jewish communities with one another. Whether it was Kabbalat Shabbat at Temple De Hirsch Sinai on a Friday night (…Jessie’s favorite), or a Shabbat Morning Minyan at Kavana (…my favorite), or a Shabbat dinner or Passover Seder at one of your homes…these times felt neither Plan A nor Plan B, they were both public and personal. Jewish community is like that, it’s both public and private at the same time, it’s a liminal space, an in between space. So this became Plan Bet, named for the Hebrew letter B.

And so we carried on with Plan A, Plan B, and Plan Bet, mixing and matching them to suit the moment. And we carried on like that into our relationship and then into our marriage.

Plan B was the first to suffer when Jess’s mobility started to decline. We still went out and did stuff, of course. But with all the extra time and effort involved it was a matter of picking and choosing our battles. It was hard to justify a big outing when we could just as easily cook a meal or stream a movie at home without the accessibility challenges. Or better yet, snuggle up and read a good book aloud together.

Then the pandemic hit and all the movie theaters and all the restaurants closed anyway. Plan B was pretty much done. And the Temples closed down as well. Both De Hirsch and Kavana pivoted and went online as fast as they could. That was much appreciated and we definitely tuned in and tried to make the best of it. But it wasn’t really the same, of course.

Now, I have to say that the pandemic years were difficult. Not just for the loss of Plan B and Plan Bet. We experienced all the stress and anxiety and isolation that everyone experienced. And we had to layer on top of that Jess’s declining health and increasing care needs and deal with all of that in the context of a quarantine. It was hard.

But I also have to say, it was awesome. It was Plan A all the time! Jess and I did nothing but spend time with each other. And much more time than we would have or could have if we had not gone into quarantine. It was hard but it was also all kinds of wonderful.

So in situations like this with a long, fatal illness people often say they want to remember their loved one “…as she was…before all of this happened”. And I get it. I will. I will always remember Jess out and about around town with all her abilities.

I will always remember Jess ice skating, that freedom of movement which she loved. I will always remember Jess dancing (…not because she was a great dancer, but because of how she decided that she wanted to be the kind of person who enjoyed dancing and then proceeded to read and understand and evaluate and re-evaluate and teach herself how to dance). I will always remember Jess in the classroom, teaching, which she lived for. And I will always remember her amazing smile.

And I wouldn’t wish ALS on any family. It’s truly horrible. However, there’s plenty from this time that I do want to remember. I want to remember Jess showing up every day with courage and grace and humor, and as much acceptance as she could muster. I want to remember her constantly figuring out what she could do, even as more and more was receding just beyond her grasp.

In the Torah there’s a word/phrase, hineini (הִנֵּנִי). It’s usually translated as “Here I am!” But it’s not just “I’m here” in the sense of location. It carries with it more of a sense of place and time and presence. I’m here and now…in this moment.

Most famously, G-d calls to Abraham at the start of the Akedah, the story of the Binding of Isaac, and Abraham responds hineini, “Here I Am”. Moses also responds with hineini as G-d calls to him in the form of the Burning Bush. It’s often used like this at the start of a pivotal narrative when the speaker doesn’t know what’s happening or what will be asked of them. They simply respond “Here I am!”. The speaker is responding to the moment with presence and genuine awareness, more than anything.

Hineini appears two more times in the Akedah. Abraham also responds with hineini when Isaac calls out to him, his father, in confusion. And Abraham responds with hineini again at the climax of the story when an Angel appears and commands him to spare his son’s life.

So hineini is not just used at the start of a story, but also as things are shifting and changing, at critical inflection points. The speaker responds hineini to pause and gather themselves and return to the moment, to understand how things have changed and how they may need to change in response.

Despite her illness and decline, despite loss after loss, despite her fear and sadness, despite all of it, Jessie really embodied hineini over and over again these past few years. She kept showing up day after day no matter what. She kept saying “Here I am. What’s going on? What can I still do?”

Above all, I think that’s what I want to remember. That was the heart of Plan A all along, abiding in each other’s presence to see what we could accomplish. That was my person.

When I shared this with Jess I told her she was not allowed to go full teacher/editor on me. Luckily, she loved it pretty much as is. She said it was very barry. But she did want to add a brief addendum. It’s a sentiment paraphrased from her all time favorite television show, The West Wing.

Jessie wanted to thank you all for coming today. And for making this a real celebration of her life. She’s genuinely sad she couldn’t be here with you today. After all, she only missed it by a few days.

Zichronah l’vrachah / May her memory be for a blessing
זיכרונה לברכה

Eulogy Part I

By Jessie

On June 29, 2026

In family, living with ALS, loss, teachers, teaching

by Rabbi Jeffrey Silverstein on 6/26/26

The Jewish people have always prized the value of education; we know that learning and teaching are how we unlock the great potential of a world in repair. It is no surprise, then, that in our tradition we have many sources that speak to the honor due to teachers, but perhaps it is this selection from Talmud Bava Batra that speaks to us most today. Our sages taught, explaining a verse from the Book of Daniel, that “‘those who lead others to righteousness will be like the stars forever and ever,’ These are school teachers.” and we could add today: “This is Jessie Towbin.”

Jessie was born in New Haven, Connecticut on April 23rd, 1970, though she grew up in Bethany from the time she was six months old. According to her mother, Linda, Jessie made herself known from her very first day – and she was instantly proud of her daughter. This was a pride that would only grow as Jessie’s marvelous character was revealed over the course of her childhood. Even as a pre-schooler and kindergartener, she demonstrated a deep sense of herself and those around her. An instance of this, that perhaps was an indication of her calling to teach, happened after she finished Kindergarten.

During the year Jessie never complained about her teacher, who was known to be unpopular with students and parents alike. However, at the end of the year, when given the chance to reflect, Jessie shared her evaluation with the wisdom of a much older person. Linda shared that Jessie said, matter-of-factly, that her teacher “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.”

When it was Jessie’s turn, she too knew how to teach, but she also knew how to treat her students with respect, to honor their dignity, and to take care of them. Much of this was simply a part of Jessie’s nature, however in her self-authored obituary, she also attributes her philosophy of teaching to the great deal of research on teaching and school reform that she had the privilege to study before ever setting foot in a classroom. For 24 years Jessie lived and honed her philosophy across four different schools, touching the lives of a great deal of students and fellow educators along her way.

Jessie did not only teach in the classroom; she was generous with her talents and passions. Notably, Jessie was on the education committee for the Bridge Family Religion School at Temple De Hirsch Sinai. It is known around the religion school that her keen insight was truly instrumental as our programs have evolved. Her impact on our community is a legacy that we will feel for many years to come.

In her life, through private journals, annotated bibliographies, curricula and lesson plans, letters, and in the last few years her blog, Jessie was a prolific writer. Her writing reveals much about who she was, about her sense of humor, her intellectual humility, and her deep wisdom.

In a 2017 blog post for CSTP (Center for Strengthening the Teaching Profession), Jessie wrote about her process of choosing a read-aloud book for her eighth graders after her initial choice of To Kill a Mockingbird didn’t capture her students’ attention. She writes, “most of the time, I have to start with my group of students in mind, and search for the book that will be the right match. I had forgotten to do that when I selected To Kill a Mockingbird, and then, against my better judgment, I continued to put the curriculum ahead of the students. Anisa’s question gave me the jolt I needed to change course. The next morning, I told the kids that I valued To Kill a Mockingbird and hoped they would each choose to read it at some point, but I could see that it was not the right book for the class at this time.”

Later in the same post she writes: “I imagine that there are individuals who would see this course of events as a reason not to trust teachers’ professional judgment, and instead to centralize all decisions about instructional materials at the district or school board level. For me it has the opposite effect. It makes me think about the absurdity of individuals far removed from classrooms making decisions about text selections. If I, who know my students deeply, can occasionally make the wrong choice, how could it be alright to leave the decision making to individuals who don’t know my students at all?”

I will also share some of Jessie’s more recent words in two excerpts from her final blog post. In it, Jessie reflects on her experience living with ALS. Towards the beginning of the post, she writes:

“Occasionally I have a particular resentment for the people living with ALS who are slow progressors. I started going downhill within 9 months after diagnosis. That’s when my dominant arm lost all strength. Then at 11 months, I noticed my speech was sounding garbled. I had to give up driving after I fell and broke my elbow…So, at times, I have a special resentment for people living with ALS for many years who can speak and use their hands, and are maybe in a wheelchair or maybe not.”

And yet, true to the character she possessed and demonstrated throughout her life, at the end of the same post, Jessie writes:

“Recently, I found out about a group of young women who are living with ALS. They have young children or don’t get to have children, because of this terrible disease. That helps put things in perspective for me.

I’m lucky that I was able to have kids, and I was able to hold them while they were infants and toddlers. They are both young adults now. I was lucky to have so much time with my kids before I succumbed to the worst symptoms of ALS.”

Even in her pain and grief at all she had lost, Jessie maintained an appreciation for all she had gotten to have and all she still had. And she had so much. In her life Jessie was brought so much joy from her sons Ethan and Max. She had a great love and devoted partner in Barry. She had the love and support of her parents and siblings. She had a Jewish identity that filled her life with pride and meaning. She had a calling and made a meaningful impact in a field for which she had immense passion. She had big communities and close friends. She had many teachers and many more students.

Over the course of her life Jessie led so many to righteousness. She will truly shine as the stars forever and ever. May we continue to enjoy the reflection of her shine and feel the warmth from the legacy and words she left behind. Her memory WILL be for a blessing.

Keeping it Real

By Jessie

On June 3, 2026

In living with ALS, loss

I missed my self imposed deadline by a few days. I ran into delays because of visitors, which is positive, and device problems, which is very negative, because it meant that I couldn’t communicate with my family. I hope to be back to publishing every month starting in July. I bought myself two months, but June is a busy month. :-/

Many of you have told me that you find my blog posts meaningful and inspiring. It is very gratifying. I am lucky that every month many of you tell me how my writing affects you.

It’s true that the vast majority of the time, I’m grateful to be alive despite my condition. However, there are times when I feel immensely sorry for myself.

I envy everyone who can scratch their own itches. I envy everyone who can jump up and go to the bathroom alone. Basically, I envy every able bodied person.

Occasionally I have a particular resentment for the people living with ALS who are slow progressors. I started going downhill within 9 months after diagnosis. That’s when my dominant arm lost all strength. Then at 11 months, I noticed my speech was sounding garbled. I had to give up driving after I fell and broke my elbow.

I fell many, many times, including one time when I was crossing the street in downtown Seattle. I had to use a walker 18 months after diagnosis. Then I needed a wheelchair when going long distances. Oh, and my left arm had lost its strength by then. I had to resign from teaching, my calling. So, at times, I have a special resentment for people living with ALS for many years who can speak and use their hands, and are maybe in a wheelchair or maybe not.

In February of this year, I thought I was going to die soon, because I read about two women with ALS, who had died at age 56. In April I was going to turn 56. My therapist tried to convince me that that didn’t mean I was going to die, but I became very anxious. I got very anxious whenever I had to disconnect my external ventilator, for things that I previously had no problem doing, like going to the bathroom. I would hyperventilate and experience some panic. The only thing that would calm me down was closing my eyes, but most of the time my low oxygen in these circumstances made it impossible for me to close my eyes. So maddening!

Barry is awesome, and figured out how to take the ventilator with us when we did those things. He also called my neurologist to describe what was happening and to request an increase in my anti anxiety medicine, which was my idea. My doctor said we were doing all the right things, and he prescribed an increase in my anti-anxiety and a sedative. The sedative is magical. I take nowhere near the maximum dose for a day. Just half a pill stops my hyperventilating and I have no problem closing my eyes!

Recently, I found out about a group of young women who are living with ALS. They have young children or don’t get to have children, because of this terrible disease. That helps put things in perspective for me.

So I will continue to write and I’m sure much of it will be “positive” and full of gratitude for each day. However, it also feels good to keep it real now and then.

Entries

By Jessie

On April 30, 2026

In living with ALS, teaching

When I joined the School District in 2008, I had a summer professional development in writing workshop. It was based on the work of Lucy Caulkins from Teacher’s College, Columbia University. In the professional development, we had to model what our students would do, which included keeping a writing notebook. Within the writing notebook, we had to write “entries” – brief passages of ideas that we might develop into longer pieces in the future.

I have several posts in progress, and I can’t decide which to develop. I’m going to post entries. Maybe my readers will help me decide. Maybe the process will help me decide. Here are the entries.

End of the school year: The end of the school year is very hard for teachers. They are just as eager as the students are to reach summer break, but they have to keep the students engaged through the last days. Max’s high school had literally nothing worthwhile going on in most of his classes during the last ten days. I blame it on the fact that it’s a big school that does nothing to make small units of teachers and students. When I taught, regardless of the school, my team came up with worthwhile and creative ways to keep the students engaged through the end of the school year.
Scholarships: First with my eder son, Ethan, and now with Max, I have developed expertise in the area of scholarships. The summer before Ethan was a senior in high school, I started an exhaustive search for scholarships. I had read somewhere about a student who had applied for and received so many scholarships that she covered her entire college tuition for four years. I signed up for the top rated scholarship email service. There are three types of scholarships. Sweepstakes scholarships, needs based scholarships, and special category/leadership scholarships.
Students can change: One of my principals told me that educators sometimes don’t know when their efforts reach their students. I have been fortunate to know when my attempts to connect with a student had failed, but years later, I either saw the change myself, or heard about it.
Keeping it real: You have told me that you find my blog posts meaningful and inspiring. It is very gratifying. I am very lucky that every month you all tell me how my writing affects you. It’s true that the vast majority of the time, I’m grateful to be alive despite my condition. However, there are times when I feel immensely sorry for myself.

If you feel inspired, let me know which entry or entries you would like to hear more about. Barry already told me that scholarships sounds boring.

Update on Voice Clone

By Jessie

On March 31, 2026

In living with ALS

Barry “tricked” my voice clone into speaking Hebrew. The language model he used does not support Hebrew, so he did it by painstakingly phonetically transliterating the blessings in English.

It took Barry lots of trial and error. When we agreed that there was a version of a blessing that sounded best, he would save it and put it on my device.

I now have four blessings on my device that I can recite in my voice. I was able to participate in our (early) Passover seder for the first time in years by saying the blessings over the four cups of wine. Here it is.

My synagogue has been undertaking a huge renovation, including ADA accessibility. On May 1st is the grand re-opening, and I will be the first one to go up to the newly accessible podium in the front of the sanctuary. I will recite the blessing for the opportunity to repair the world. This is it.

If You Want To Sing Out…

By Jessie

On February 26, 2026

In living with ALS

I invited my husband, Barry, to be a guest blogger for this piece, because I can’t begin to explain how he achieved this miracle. Please note: Barry is a Principal Software Engineer by day. I will attempt to translate anything I think may trip up us lay people.

Jessie did some “phrase banking” when she was first diagnosed with ALS in 2017 in anticipation of losing her voice. She recorded a library of phrases that are stored for verbatim use on a text to speech device. When she types “Hello!” the device plays her banked recording of “Hello!” in her own voice.

Jessie intended to do “voice banking” as well, in which she records a huge quantity of sentences, and then a company generates a synthesized voice that sounds like Jessie’s original voice. Unfortunately, between teaching and looking for a new house, Jessie only got halfway through recording the sentences before her speech was affected.

Like most folks in this situation, she listened to the various canned voices on her Tobii Dynavox device and chose a female voice that sounded “close enough”. These voices are good. The technology has come a long way from the computerized voices we heard growing up (…think “War Games” or Stephen Hawking’s early use of text to speech technology) but it was never her voice.

Well, we recently heard an interview with Eric Schmidt, former CEO at Google. He was talking about how they had a prototype a while back that could create a realistic voice clone from no more than a few minutes of audio. It was not released at the time for various reasons but it got me thinking that the time was right for us to return to this issue and do something!

As you know, Jess was a public school teacher for 24 years and she had a number of classroom videos she filmed. I extracted a bunch of clear voice audio from these and fed them into the ElevenLabs voice cloning app (https://elevenlabs.io/).

ElevenLabs markets themselves primarily for agentic (autonomic AI) content creation: voice overs, audiobooks, podcasts, chat bots, etc. However, their cloning capabilities were reviewed as highly accurate and expressive.

Indeed, the voice modelling was spot on from the ~60 minutes of input we provided. We now had a nearly perfect sounding Jess-bot!

I thought at this point that we might use the voice clone to generate content that could be fed into the traditional voice banking apps, having the voice clone do the “recordings” that you would normally do yourself in this process. Unfortunately, there is a maze of intentional licensing barriers to such an approach.

However, ElevenLabs does have a partnership with BridgingVoice which is a non-profit organization focused on ALS and assistive communication technology. “We help people living with ALS (pALS) maintain their ability to meaningfully communicate with family, caregivers, and medical professionals, no matter the stage of their disease.” BridgingVoice picked up the licensing fees for our use of the ElevenLabs voice clone API (Application Programming Interface). (https://bridgingvoice.org)

Then I wrote a little application to act as a broker between the various components. It takes in the input text from her typing app, communicates with the ElevenLabs API to vocalize that text, and processes and plays the audio returned. (From Jessie: if this paragraph confuses you, just go on to the next one. It won’t affect your understanding.)

And voila, Jess has her voice back! She types (with her eyes) anything she wants to say and it is vocalized in near real time with her cloned voice.

Note that BridgingVoice has a Tobii Dynavox integration app similar to the one I wrote that they provide free of charge to the pALS they support. If you need this, you should totally use it – it works just fine. I decided to write my own software because…

I wanted to learn more about the technology and I was already halfway down the road of thinking through various issues in my head, so I couldn’t stop myself. 🙂
The BridgingVoice app had some volume integration issues I really wanted to address to make the user experience smoother.
I’m sure the ElevenLabs Text to Speech API is going to evolve quickly and I wanted to be in a position to incorporate new features without annoying the BridgingVoice folks with lots of questions and feature requests.
I also added a bunch of additional INFO and DEBUG diagnostic logging so I can help Jess when things aren’t working so well. (From Jessie: I ignore the technical terms I don’t understand, if it doesn’t get in the way of my overall understanding.)
2026-02-22 13:41:04.202 [INF] VoiceApp Main()…
2026-02-22 13:41:04.234 [INF] Text: 86 characters
2026-02-22 13:41:04.867 [INF] GetAudio(): 0.627 seconds
2026-02-22 13:41:10.624 [INF] PlayAudio(): 5.754 seconds
2026-02-22 13:41:10.628 [INF] VoiceApp Main(): 6.516 seconds

The “Speak” button to the right on her eye gaze keyboard vocalizes with the same canned voice as before. The new “Voice” button on the left vocalizes with the clone. But the clone is dependent on a network connection to access the ElevenLabs API so we left the Speak button in place as a backup when we’re out of the house, or having a Wi-Fi outage, or whatever.

(Also, the clone tends to add confusing emotional tones to texts with just a word or two in length. So the old voice or banked phrases are still much better at saying “Yeah” or other simple texts that don’t provide enough language context for the clone to model very well.)

This is a small clip of Jessie from 2011 leading a class of high schoolers through a reading of Homer’s Odyssey:

And this is Jessie 2.0 today:

(Ok. You got me. I typed that, not Jess. But you get the idea.)

I’m sure this process is going to get even easier from here on out. It’s not hard to imagine a time when you turn on your text to speech device for the first time and it prompts you to record or input a few simple voice prompts. And that’s it, you have a highly accurate personalized digital voice. I’m just glad we were able to manually connect the tech dots for Jess’s benefit today.

So let Jessie know if you’d like to come by for a visit some time soon. She’d be happy to catch up and talk with you in her own unique and beautiful voice.

…Sing Out.

– barry

My Activism

By Jessie

On January 30, 2026

In activism

In my mind, I’m someone who takes to the streets in protest. I march. I carry signs. I chant. But the reality is that I have participated in few protests. My activism has mostly been in written form. I have created and signed petitions, written letters to the editor and to government officials. I even sent telegrams to President Biden urging him to tell the archivist to sign off on the Equal Rights Amendment.

Here’s an open letter I wrote to the assistant superintendent of the school district where I taught at the time. It was the year 1999, and the school district had banned students from wearing Gothic clothing in the wake of the Columbine mass shooting. My letter appeared in the Federal Way Mirror. (Scroll down to see the beginning of the letter.)

I recently had training with the Jewish Coalition for Immigrant Justice Northwest. It was perfect for me, because although they send out action alerts for protests, the training focused on supporting state bills and contacting one’s state senator and representatives. They taught us how to support a bill without having to testify. They also emphasized the importance of contacting the committee chair person for any bills we’re supporting, especially if we’re a constituent.

I have supported two bills so far. One states that law enforcement persons and ICE can’t wear masks. That one is now law. The other, “the Immigrant Workers Protection Act, would require employers to notify employees when U.S. Immigration and Customs Enforcement plans to conduct inspections or audits in the workplace, so workers are not caught off guard and can better protect their rights.”

Next week, Barry and I will attend a Zoom training on rapid community response to ICE activities here in Seattle. I can’t jump in the car and be be an observer, but I’m sure there’s plenty I can do to support my neighbors at risk.

I would love nothing more than to participate in ICE protests. I don’t think I have ever felt more opposed to anything in my life. I take some comfort in knowing that there are things I can do to make a difference.

December Break

By Jessie

On December 29, 2025

In living with ALS

I’m taking December off from publishing a new post. I’m trying to solve some technical issues with my blog website. Incidentally, AI is surprisingly helpful in this realm. There’s no time limit like there is with live people. Whenever I chat with an actual human, it takes me so long to type that the person always asks me if I’m still there, even though I have prefaced the whole interaction with an explanation of my situation, and please don’t end the chat if I take a long time to respond. This doesn’t happen with AI. The explanations I get from AI have been better than those from humans, and I don’t worry about sounding dumb. Well, this turned into a little post after all.

I have a request for all of you. If you received the notification for this post, please let me know via posting a comment that states that you did, or send me an email.

Gratitude

By Jessie

On November 30, 2025

In living with ALS

My self imposed goal is to publish a blog post once a month. I’m working on a post, but it is far from being ready to publish. Instead of missing this month, I will take advantage of this season of thanksgiving to publish a brief post about my gratitude.

As many of you know, in February of 2022, my neurologist estimated that I had six months to live. I’m so grateful that he was wrong. At that time, Ateka, my caregiver, predicted that I would live to see my younger son graduate from high school. Amazingly, he is a senior now and only 7 months away from this incredible milestone (no evil eye).

Moreover, I’m thrilled that my quality of life is such that I want to live. I don’t get out much, because I avoid crowds, but I am never bored. I am grateful for everyone who makes life worth living, starting with my family and friends, especially my frequent visitors: Sandra, Julia, and Sara.

I’m enormously grateful to be able to write this blog and for having such loyal readers. I love all your comments and encouragement each month.

And so much joy and surprises have come from writing it. Most recently, Jim Joseph contacted me. He’s the person who created the I Hate to Dance website, which I referenced in my “Dance, Baby, Dance” post (you can read his comment here– scroll down to the comments). It’s so exciting to hear from people I’ve admired from afar, not only Jim, but Tom Angleberger too.

Barry and I have been reading the new biography about the life and death of Lou Gehrig. The technology I use as a person living with ALS today really is amazing. I’m truly grateful that I have this creative outlet for my thoughts and my voice.

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.