Category: loss

Voice

On September 24, 2021

It’s the middle of the Jewish High Holiday season. I have been participating in synagogue services via Zoom, and I find that I miss saying the prayers out loud even more now than during Friday night services, which I also often attend via Zoom. It’s hard to feel completely present in the service without my voice.

A year or so ago, my son, Max, asked me which ability I most wished I still had since getting ALS. “Speaking,” I replied as quickly as I could type with my eye gaze device. Max was surprised that I didn’t choose walking. Sure, I would love to be able to move independently and do all of the things that go with mobility. Nevertheless, speech is the ability that would give me back my sense of self and independence the most.

My voice had an auspicious beginning. When I was born, hospitals still kept the babies in the nursery. My mom was in her hospital room, resting, and she heard a baby crying very, very loudly. She thought to herself, “That poor mother!” Then the crying got closer. And closer… until it was in her room. She saw that I was “purple with outrage.” Her pity for the mother turned to pride, and she thought, “No one’s going to push her around.”

For the most part, she has been right. I am no shrinking violet.

Getting back to services, I not only miss saying the prayers out loud, I also miss singing along with the congregation. Joining in song always flooded me with warmth and connection. Of course, if you ever sat next to me during services when I could still use my voice, you know that I sang extremely quietly, even silently. That is because I couldn’t carry a tune and I was both too self conscious and too considerate of those around me to sing audibly.

A colleague of mine who was the school choir director told me that anyone can learn to sing. I heard the same thing from other professionals over the years. One of the things I had hoped to do after my kids were grown was take singing lessons. I just wanted to be able to sing on key, nothing fancy. I’m sad that I will never get to try.

In my next life, I want a beautiful voice. I want a voice that gets roles in high school musicals. I want a voice that leads others in song. I want a voice that lets me harmonize with my husband. I want a voice that allows me not to be a shrinking violet when the congregation sings.

Doc

By Jessie

On December 31, 2020

In living with ALS, loss

I just wrote a Dear John letter to my dentist. We had been together for 25 years, and I absolutely loved him. Sadly, as is common in many long term relationships, he can no longer meet my needs.

I am making light of it, but it really is a loss. Of all the losses that come with ALS, I never anticipated that one of them would be my relationship with Mark “Doc” Nordlie, dentist extraordinaire. As amazing as he is, I now need more specialized care. I have a wicked gag reflex, as well as shortness of breath and difficulty swallowing. I also need to be able to stay in my power wheelchair during the cleaning, both for stability, and also because my communication device is attached. I’m certain that the wheelchair would not fit in any of the stations.

I never discussed these developments with Doc, so, in truth he might feel that he and his team would be able to provide what I need. While I would love visiting with Doc and the staff post pandemic, I don’t want to go to the office as a patient who can’t move or speak. Seeing Doc for dental care is one of those experiences I would rather preserve as a memory of my able bodied self.

I feel that way about a lot of places that hold a strong attachment for me. Eastham, Massachusetts, on Cape Cod, is my favorite place in the whole world. I would rather enjoy my memories of staying at the cottage on the pond, swimming at First Encounter Beach, and eating lobster, than going now and staying someplace ADA compliant, watching other people swim, and eating through my feeding tube.

I know that it’s possible to enjoy a place just by being in it. I do feel that way about some places. But I am also learning that I can do a lot of living in my memory and imagination. That includes reliving wonderful memories of going to the dentist.

Dressy Jessie

By Jessie

On December 25, 2020

In family, loss

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.