Posts - Imperfections of the Human State

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.

Another Public Service Announcement

By Jessie

On September 2, 2024

In living with ALS, Uncategorized

Or, why I need to have a fundraiser for my care^*

The very next thing on my financial advisor’s list for me in autumn 2017 was long-term care insurance. However, I got my ALS diagnosis before I started the process, and my financial advisor said, “Now you can’t get it anywhere at any price.”

The irony of out living my prognosis and the standard ALS statistics (2.5-5 years from diagnosis) is there is no agency to fund my care. Medicare doesn’t, nor does my supplemental medical insurance. The ALS Association doesn’t fund home care, and neither does the Steve Gleason Foundation. I could spend down my assets to no more than $$2,000 and go on Medicaid, which does fund home care at a terribly low hourly rate. But given the look back period (5 years in Washington state), I would likely die before I finally qualified.

I have exhausted all sources of funding available to me over five years of paying for caregivers. These sources have included savings and taking the maximum possible accelerated death benefit from my life insurance policy.

What really must happen in this country is for Medicare to cover home health care. That would allow people to stay in their homes without having to impoverish themselves. However, it won’t happen until Democrats control both houses of Congress and the White House. Until then, I urge you all to purchase long-term care insurance.

Blessings

*A huge thank you to all who have contributed to my GoFundMe campaign. This truly is a public service announcement — not a sales pitch.

A Public Service Announcement

By Jessie

On April 12, 2024

In living with ALS

In the series finale of The Crown, the Duke of Edinburgh is gleefully planning his own funeral. Since I planned my funeral a couple of years ago, I related to his glee. My funeral will have none of the pageantry that was in the Duke’s funeral, thank goodness, but there is something very gratifying about taking care of this final act and sparing my loved ones from the decision making and the expense during their grief.

When my friend Roberta was planning her mother’s memorial service, and struggling with her siblings to agree on the time and place, I told her that I had already planned my funeral. She said, “I love that idea!” And with that Roberta and her husband got started planning their memorial services.

I’m sure that I would not have planned my funeral in mid life if I didn’t have a terminal illness. It’s just like making a will. Few people do it before they reach their golden years. But as my friend Lisa Booth, a stage four cancer survivor, said when I asked her for advice about telling my kids that I have a terminal illness, “all we really have is today.” Every time I hear about a fatal car accident or a mass shooting, I hear her words.

While the Duke was enthusiastic about planning his funeral, Queen Elizabeth felt the opposite about planning hers. She told the Duke to stop talking about it because, “it’s too sad.” I don’t know if that feeling is what stops more people from doing estate planning, but I would argue that for those of us who are not royalty, failing to do so will be much sadder for those we leave behind.

I recommend the site Get Your Shit Together – for advice on what to gather in the event of your death to make it as easy as possible for your loved ones.The woman who created the website, her husband died in a bicycle accident and had not prepared for this eventually. She‘s a reluctant expert.

Blessings.

Friends and Neighbors

By Jessie

On May 3, 2022

In living with ALS

At one of my first ALS support group meetings, our host, Carl, said, “When you have ALS, your address book changes. You learn who your true friends are.” That has not been my experience. All of my friends have remained steadfast. They visit often, although Covid, off and on, has disrupted my willingness to have visitors. They stay in touch by email, and the local ones eagerly volunteer to help when I put out a call. Moreover, my friends treat me exactly the same as they did before I lost my ability to speak and move. I am very lucky.

I have been lucky in other ways. One of the first things I did after I got my ALS diagnosis, was start looking for a new house. We were living in a three-story townhouse, and I knew it was a race against time before I could no longer climb stairs. I wanted to buy a single-story house with four bedrooms and two bathrooms, within walking distance to the boys’ schools. It was a very tall order.

After looking for nine months, I found the ideal house. While I still had the option to back out, my realtor, Tara Farquhar, advised me to meet the neighbors on either side, “in case they turn[ed] out to be crazy.”

On an evening in late July, I ventured to my future neighborhood. After meeting Sandra and Jeff to the south, and Chiara and Nate to the north, I felt like I had won the neighbor jackpot. Not only did they welcome me enthusiastically, each couple also invited the boys and me to the upcoming annual neighborhood night out. I said a silent thank you to Tara for urging me to introduce myself to the neighbors.

Shortly after we moved in, I wrote to Sandra, Jeff, Nate and Chiara about my ALS. They responded with warmth and offers of help. After I stopped working, I needed help making phone calls and filling out forms. Sandra, who was retired, often came over to help me with those tasks. Having worked in the insurance industry for many years, she was especially helpful when we called my auto insurance company about my policy. She was (and still is) my go-to person for all kinds of assistance. I distinctly remember texting Sandra when I couldn’t unscrew the cap on the soy milk container, back when I was still eating, but my hands were very weak. She came right over.

Sandra’s husband, Jeff, has been my unofficial electrician. He replaced a lighting fixture for me, down to the wiring. When the power went out in my bathroom, Jeff diagnosed the problem and replaced the faulty outlet. In addition to his electrical prowess, he used to be a professional bicycle mechanic, and has all the necessary equipment. Last spring he gave the boys’ bikes full tune ups.

After I told my neighbors about my ALS, Sandra shared the news with Julia and Joe, who live across the street from her. Julia, whom I hadn’t met yet, also wanted to help me. Before long, Julia became one of my volunteer caregivers. She got me out of bed on Thursday and Saturday afternoons, took me to the bathroom, and gave me my formula through my feeding tube, all while we had a wonderful visit together. This went on for many months, with Sandra joining in when transferring me became more challenging.

Joe, Julia’s husband, has offered to read to me. I have not taken him up on it yet, because of time. I have taken him up on his annual art sale. Joe is an avid photographer and painter. Each December, he has a show of his work, and asks the buyers to donate the money to a hunger relief organization instead of paying him. Since their house is not accessible to me in my power chair, Joe and Julia brought the art to me for a private showing.

When we had a powerful windstorm a couple of years ago, a section of my fence blew over. Chiara and Nate noticed, and propped it up so well that it has withstood subsequent windstorms. On another occasion, I heard what sounded like someone on the roof. When I looked out the living room window, I saw Nate climbing down a ladder from my roof, holding his leaf blower. He told me that he was cleaning my roof and gutters before the rains came.

Whenever I think of my great good fortune with friends and neighbors, I recall the parable of the man in the flood. There are many versions of the parable. I will quote the one from the “Take this Sabbath Day” episode of The West Wing, since it’s where I first heard the parable. In this scene, Father Thomas Kavanagh speaks to President Bartlett:

You remind me of the man that lived by the river. He heard a radio report that the river was going to rush up and flood the town, and that all the residents should evacuate their homes. But the man said, “I’m religious. I pray. God loves me. God will save me.” The waters rose up. A guy in a rowboat came along and he shouted, “Hey, hey you, you in there. The town is flooding. Let me take you to safety.” But the man shouted back, “I’m religious. I pray. God loves me. God will save me.” A helicopter was hovering overhead and a guy with a megaphone shouted, “Hey you, you down there. The town is flooding. Let me drop this ladder and I’ll take you to safety.” But the man shouted back that he was religious, that he prayed, that God loved him and that God will take him to safety. Well… the man drowned. And standing at the gates of St. Peter he demanded an audience with God. “Lord,” he said, “I’m a religious man, I pray, I thought you loved me. Why did this happen?” God said, “I sent you a radio report, a helicopter and a guy in a rowboat. What the hell are you doing here?”

ALS is the most tragic thing that has happened to me, but I don’t ask God why it happened. Instead, I thank God every day for sending me the many, many people who have made having ALS easier, including Sandra and Jeff, Julia and Joe, and Chiara and Nate.

Fleeing Ukraine

By Jessie

On March 4, 2022

In family

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.

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.

The Slow Pace of Science

By Jessie

On May 27, 2021

In living with ALS

The ALS News Today articles that showed up in my inbox a couple of weeks ago – SOL-257 Gene Therapy Targeting TDP-43 Shows Promise in Mice and Arimoclomol Fails to Show Efficacy in Phase 3 Trial, Topline Data Show – pretty much sum up the state of ALS research. That is, there are studies underway that sound hopeful, but which are a long way from being on the market, and there are many studies that fail. Sometimes I’m amazed and heartened to read about the various clinical trials taking place around the world. Lately, however, I’m frustrated by the slow pace of science.

There are only two ALS drugs on the market today. Riluzole received FDA approval in 1995. It can prolong lung function and increase survival by two to three months. Yes, two to three months. The other drug, Radicava, was approved in 2017, and slows progression, but not necessarily for more than a year or for people with advanced ALS. In fact, insurance won’t approve Radicava for pALS whose symptoms are beyond a certain threshold.

There is a new drug seeking FDA approval. I was fortunate to be a part of the clinical trial. I don’t know if I received the study drug or the placebo, but once my participation ended, I had the opportunity to take the actual drug, which I’m still doing. People ask me if it helps. I have no way of knowing if my progression would be worse without it. The results of the clinical trial were statistically significant, but very modest. We are still nowhere near having a drug that stops the death of motor neurons.

The fact that ALS has many causes further complicates things. Even if scientists develop a successful treatment, it will likely help only some ALS patients. We will probably need multiple treatments in order to stop ALS for all who have it. (See Why ALS is more like a Syndrome than a Disease, and what that Means for Treatments.)

The ALS Association just announced a goal to make ALS livable by 2030. To achieve this goal will take enormous resources, but it is possible. If you would like to help, please donate to the ALS Therapy Development Institute or to the ALS Association.

May is ALS awareness month. Please spread the word!

Successor Skepticism

By Jessie

On April 4, 2021

In living with ALS

In the new Marvel TV series, The Falcon and the Winter Soldier, the government introduces a new Captain America. The new one replaces the original Captain America, Steve Rogers, who retired from his career as a superhero at the end of the movie, Avengers Endgame. Max, who was watching the show with me, rejected the new Captain America right away. I tried to keep an open mind, but it was hard. We loved Steve Rogers. Any successor is going to have to prove himself.

On Thursday I had a similar experience at my ALS clinic visit. The ALS clinic involves four teams of specialists who rotate through the exam room. One of the teams is the care coordinator from the local chapter of the ALS Association, along with a social worker. Some months ago, Suzy, the fabulous social worker, left. On Thursday, a new social worker appeared. I will call her Rhonda.

As with the new Captain America, I tried to keep an open mind about Rhonda, despite her off-putting first moves: when she entered the room, she went right to the computer without saying anything. After a minute, she introduced herself to me. She never acknowledged Barry. She only acknowledged Ellen, who was there via FaceTime, after I called attention to her.

Rachel, the care coordinator, joined us by Zoom, and took the lead on asking questions. One of her questions was, “How has your mood been?” To which I answered, “Pretty even.” That’s the truth. I definitely have episodes of sadness, but most of the time I’m content, due partly to a low dose of anti-anxiety medication.

Rhonda had been silent throughout the conversation. As we neared the end of their time, she asked, “How’s your mental health treating you? Are you still seeing your therapist?”

Seriously?! First of all, we don’t even know each other, and that’s your opening question? Second, weren’t you listening when I answered Rachel about my mood?

In my stunned state, I responded that although I’m not currently seeing my therapist, I still could if I wanted to.

She followed that with, “Do you feel depressed or sad or down?”

Ever?! Of course I get sad; I have ALS!

I responded, “No.”

As with teaching, it’s all about the relationship. Rhonda did nothing to establish a rapport. I reacted as many students do when they don’t trust the teacher: I refused to open up.

I have very high expectations of professionals and little tolerance for what I view as falling short. I do, however, believe that people can improve, especially with the right feedback. I don’t have a direct line of communication with Rhonda, but I will send some well crafted feedback to Rachel, who can pass it along. The real test will come in three months when I return for my next visit. Let’s all hope that Rhonda develops effective people skills in the interim.

Rigid Schools, Part 1

By Jessie

On February 1, 2021

In family

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.