Tag: loss

Mostly Food; Sometimes Drinks

On December 7, 2024

I chose to have a feeding tube inserted in 2019 in anticipation of the day I would no longer be able to swallow comfortably or effectively. I have not eaten food by mouth since early 2021. At first I didn’t miss eating, because it was so unpleasant. I would gag and choke. My last meal was oatmeal.

I remember early in my tenure of not eating, I read in the blog of another person with ALS that she had no appetite but craved the texture of food. At the time, I didn’t get it. I had an appetite, but didn’t crave the texture of food. Now I get it. I long for the delightfully hard outside and chewy inside of a New York bagel. Better still if it comes with lox and cream cheese from Russ and Daughters. My mouth waters at the thought of the thinly sliced, silky cured salmon with a hint of saltiness, paired perfectly with double-whipped cream cheese. Heaven.

As I indulge myself reminiscing about the food I miss most, I have to include my favorite dishes of all time. First, Nime Chow ( Cambodian fresh spring rolls). If you’re familiar with Thai fresh spring rolls, these are similar. The greatest difference is the dipping sauce. Cambodians don’t use peanut sauce. Instead, they make a sauce out of white vinegar, sugar, lime juice, hot water, and fish sauce, with chopped peanuts on top. The sauce, spooned onto each bite, is what makes the experience. It’s thin, more like a dressing, and tangy, sweet, and salty. Again, my mouth waters imagining it. The other of my all-time favorite dishes is Bee Bong, a Cambodian noodle dish with thin rice noodles in coconut milk and baby corn, plus other vegetables. The warm rice noodles in warm coconut milk make it the ultimate comfort food. Both Nime Chow and Bee Bong are available at my all-time favorite restaurant: Apsara in Providence, Rhode Island.

Next, I desperately miss my favorite breakfast: granola with yogurt and blueberries. The blueberries were preferably fresh, either from the farmers’ market or from the farm where the boys and I picked our own. I miss the texture of the crunchy granola and nuts, along with the creamy, plain yogurt and plump blueberries. I have to credit my dad for introducing me to this breakfast. He ate it nearly every morning of his adult life.

Lastly, I miss whatever my family is eating. I have learned that the cravings for whatever they are eating are not terrible if I have a full stomach. But I still long to join them.

Sometimes I get a wicked craving for lemonade or ginger ale. Or just fresh, cold water.

It is hard to get my head around the fact that I will never eat food or drink anything again. I know there are people who would not want to live such a life, but I am not one of them. I want to continue living even with all of these losses. I’m having too much fun and I’m not done with all of the things I want to do. Besides, I eat in my dreams.

A Dressy Jessie Coda

By Jessie

On October 27, 2024

In family, living with ALS, loss

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.

Voice

By Jessie

On September 24, 2021

In living with ALS, loss

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.