A blog about living with ALS - and more

Tag: living with ALS

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.

My Tips for pALS*

* people with ALS

I don’t intend for this list to be comprehensive. Some tips are more relevant for people at the beginning of their experience with ALS; others may be relevant to folks at any stage. I will update the list as things occur to me.

  • Get the best neurologist you can find. Ideally it will be someone with an interdisciplinary clinic so that you can see multiple specialists on the same day, and they will work together to coordinate your care.
  • It’s never too early – or too late – to get a bidet seat. It will allow you to keep your independence longer while toileting. Even if you lose hand function, it will allow you to feel clean before someone else dries you. (Some seats have dryers, but don’t count on them doing the job.) Another big benefit is that the posterior setting (vortex on my BioBidet) can relieve constipation.
  • Read The Butcher’s Daughter: The Story of an Army Nurse with ALS, by Sandra Lesher Stuban. I found Stuban’s story helpful, because she provides a perspective of dealing with ALS as a woman and, especially, as a mother.
  • Let people help. It makes them feel good. I have trouble asking for help directly, so I send announcements via my lotsahelpinghands.com website. My friends register with the site, and when I need something, like a trip to the grocery store, I send word to everyone. Whoever can do it signs up on the calendar, and I don’t feel like I have put anyone on the spot.

About Me

My name is Jessie. I have been living with ALS since 2017, when I was 47. My first year was pretty tame, but then my progression accelerated. I had to give up my teaching career at the end of June 2019. I haven’t given up my passion for education though, and you will probably see blog posts here about my thoughts on teaching and learning. I live with my two wonderful sons and my husband, love of my life, who learned of my diagnosis after our first date, and still wanted to get to know me.

At my wedding, October 2019

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