A blog about living with ALS - and more

Category: family

Eulogy Part II

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 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.

With a Lot of Love…

With a lot of love and compassion, at home with family and friends as she has been hoping and planning all along, Jessie passed this Sunday. It was very, very peaceful. I was with her for her last. –barry

https://www.dignitymemorial.com/obituaries/seattle-wa/jessica-towbin-12938861

A Dressy Jessie Coda

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.

Fleeing Ukraine

I had been working on a different post, but listening to the tragic plight of Ukrainians fleeing their country, I can’t help thinking of another story of flight from Ukraine, which I heard throughout my childhood. My grandmother, Miriam, her younger brother, Sam, and mother, Sarah, escaped the city of Kamenetz-Podolsk in Ukraine 100 years ago. Theirs was an escape from pogroms, violent attacks against Jewish people, which had occurred throughout Europe for centuries.

Ukrainians fleeing today wait for days to cross the border into Poland, Slovakia, Hungary, or Romania. One hundred years ago, it took my grandmother and her family three attempts over three years to cross the border into Romania. The most indelible part of their story for everyone who heard it, involved them walking across the frozen Dniester river at night. They had to bribe a soldier in advance to let them cross the river. On their first attempt, the soldier at the far bank of the river was not the one they had bribed, so they had to turn back. 

As they were crossing the frozen river for the third time, the ice under Miriam’s feet suddenly cracked, and she fell in. Not wanting to attract attention, she didn’t call out. Only because Sarah happened to turn around and saw that her daughter was not there, did Sarah get to Miriam in time to pull her out. 

After making their way through a series of European countries, Sarah, Miriam, and Sam met Sarah’s father in Paris. From there, they were to journey to America. Tragically, Sarah’s father had an ear infection and was not allowed to accompany them. Miriam cried and cried, knowing she would never see her grandfather again. I think of that scene every time I hear an interview with Ukrainians who have had to leave family members behind during the past week, not knowing if they will ever see their loved ones again.

Were my grandmother alive today, her heart would break for the Ukrainians fleeing Russian soldiers. She would also be amazed and delighted that the people of Ukraine elected Volodymyr Zelensky, a Jewish man, for their president, and she would pray for his continued strength and safety.

Amen.

Rigid Schools, Part 1

I went to a very rigid elementary school. If you know my family, you can easily imagine that we would all chafe against it, but it was the only game in town. My father was a clinical psychologist with progressive ideas about education and child development. My mother had been a music teacher before I was born, and her ideas were equally child-centered. I am very much their daughter.

When I was in first grade, one of the morning routines involved copying writing from the blackboard. I remember the sentences as completely uninspiring, such as: “It is fall. The leaves are many colors.” I hated copying from the board. It was grueling work. It takes a long time for a six year old to copy that many words, forming the letters correctly, so that they touched, but didn’t cross, the solid and dotted lines, as appropriate. But it wasn’t primarily the drudgery I objected to; I wanted to do my own writing.

Brief aside: I loved my first grade teacher, Miss Brooks. I will probably write a post about her, and yes, I will title it, “My Miss Brooks.” But in this scenario, she represented the rigidity of the system.

After weeks of complaining to my parents, my mother met with Miss Brooks to discuss letting me do my own writing. Miss Brooks told my mother that the reason we had to copy from the board every day was to develop eye-hand coordination. The second grade teachers had complained that their students lacked the eye-hand coordination to copy from the board, so we first graders were getting in shape for second grade. It had nothing to do with developing writing skills or with fostering a love of writing.

My mom managed to negotiate a deal in which Miss Brooks would allow me to do my own writing once a week as a substitute for copying from the board. Two of my compositions hung on the kitchen bulletin board for years. They are now preserved in a photo album somewhere in my mother’s house. Until she finds them and sends me photos of them, I will transcribe them here from memory, complete with creative spelling.

My grandmo and grandpo didn’t come this year. I wish that they would come.

My sister Sephrah has cirly hair, she is qute and I love her.

Miss Brooks corrected my spelling errors. She included an explanation on the second piece that qu makes the /kw/ sound. That was an example of relevant instruction. Imagine how much more I could have learned about language and writing if I had been able to write something meaningful every day!

Incidentally, my mother, who is known for saving everything, never saved the writing I copied from the board.

Dressy Jessie

Those of you who have heard it know that I loved to tell this story. I even pitched it to The Moth with the help of friends Sara and Joanna. (To hear my two minute pitch, play the audio clip below.) I wish I had recorded myself telling it before I lost my ability to speak. I thought I had more time.

I have always been a planner. My first grade teacher wrote on my report card, “Jess thinks a lot about being a grown up,” so this tendency goes back a long way. It should come as no surprise, therefore, that in June 2017, when my principal announced to the staff that we should all show up to the end-of-August retreat with three personal objects to share, that I would spend the entire summer planning what to bring.

There were plenty of things that I could bring: one of the many baskets I had woven; the yarmulke I had crocheted for my son Ethan’s bar mitzvah; the article I had published…. The problem was that Joshua, my teaching partner, already knew about these aspects of my life. I wanted to bring something that would be new for information everyone.

The night before the retreat, it hit me: I would bring Dressy Jessie!

Dressy Jessie is a paper doll of me that my friend Jay made when he was in art school. Dressy Jessie also came with a whole bunch of outfits. There’s Camping Jessie, Princess Jessie, Astronaut Jessie, Firefighter Jessie… And for each outfit, Jay had made a custom vellum envelope with a hand-lettered label. Not only that, but Jay had also made a box out of foamboard to house everything. It was about the size of a Monopoly box, and inside it had sections of varying sizes for the different sized envelopes, with one large section at the end, where Dressy Jessie rested on a pink satin pillow. The cover of the box was painted purple, with a painting of the doll in the middle, and “Dressy Jessie” across the top.

I didn’t know what Dressy Jessie said about me, but I was certain that I had never mentioned it to Joshua. I ran down to the TV room closet, which is where I had last stored it. I opened the closet and looked up, expecting to see the box on the shelf. I didn’t see it. I got the step stool, and still I didn’t see it. My heart skipped a beat, and I started tearing apart the closest.

Ethan (almost 14) and Max (9) heard the commotion and came running.

“What’s going on?

“I can’t find Dressy Jessie!” I wailed. “I need it for tomorrow!”

“Don’t worry, Mom. We’ll help you. What does it look like?”

Ethan must have sensed my panic. He was at an age where voluntarily helping me was rare. I quickly described the box and continued searching.

I searched the entire house, checking and rechecking every closet, the kitchen and bathroom cabinets, the garage. Eventually I sat at the table, defeated. With my head in my hands, I said to Max, “I wish I had Origami Yoda to tell me what to do!”

Origami Yoda is from a book series by Tom Angleberger. The series is about a group of middle school students one of whom comes to school one day with an origami Yoda finger puppet. The kids and their classmates ask Origami Yoda for advice, and he helps them. (If you haven’t read this series, do yourself a favor and add it to the top of your reading list. Max and I have read it twice. https://origamiyoda.com/)

As I sat there bemoaning my loss, Max came up to me with his homemade Origami Yoda on his finger. In his excellent Yoda voice, he said, “Dressy Jessie very important was. Other things important now are.”

I hugged Max and said, “That’s so true! Thank you.”

I spent the next several weeks wondering what Origami Yoda meant.

Eight weeks later I was diagnosed with ALS. Since then, I have tried not to be such a planner. Instead, I am trying to be more present-focused and to appreciate the love that surrounds me every day.

Other things definitely more important now are.

For an update on this story, click here.

By Way of Explaining the Title

At the beginning of Homer’s epic poem, The Odyssey, Odysseus is on an island with the beautiful nymph, Kalypso. He has been away from home for many years, first fighting in the Trojan War, and then waylaid while the gods messed about with him. At this moment, Kalypso tells Odysseus that if he stays with her, she will give him immortality. Longing for his wife, Odysseus turns her down.

According to a character in Erich Segal’s novel, The Class, Odysseus’s decision reveals the theme of The Odyssey, namely: “The imperfections of the human state are outweighed by the glory of human love.” That statement has stayed with me since I read it when I was 15. Since receiving my ALS diagnosis, however, it has taken on greater significance. When I feel myself leaning too far into despair, the truth of those words pulls me back and brings me comfort.

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