A blog about living with ALS - and more

Month: June 2026

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

Keeping it Real

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. 

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. 

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. 

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