A blog about living with ALS - and more

Category: family

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. 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.

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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