A blog about living with ALS - and more

Tag: loss

Teaching Writing

My friend Julia has been reading one of my teaching journals aloud to me, because I wanted to refresh my memory about that particular year. I wrote a reflective journal most days for every year I was in the classroom. I used lesson plan books, which have boxes with lines for six periods, which is how most secondary schools have their schedules, six periods per day. My writing  had to be tiny to fit into the boxes. Julia has to use the magnifying glass and the flashlight on her phone. 

I would never be able to read it on my own. I even have trouble reading things on my device, because since my ALS has become advanced, I have trouble reading words on the left side of the screen. That’s why I prefer audio books and podcasts. 

But I digress. The second half of the journal, meaning the second half of the year, focused on writing. For more years than I would like to admit, I thought the way to teach writing to a whole class–as opposed to one student at a time– was to give everyone a graphic organizer, like the one below for argumentative writing: 

I may have modeled filling out the graphic organizer. As you can imagine, it didn’t work very well for most students. The ones who grasped the concept just wanted to write, and those who didn’t, gained no help from the graphic organizer. I always ended up making many comments on the finished drafts, and the students would never transfer my comments to subsequent writing assignments. 

Two things happened to change my method of teaching writing. One was when I transferred to the Highline School District. There I had a literacy coach, Mary Edwards, who vastly improved my practice in many ways, including introducing me to the “green book,”. That’s what we called a book published by Teacher’s College, Columbia University, that was filled with detailed scripted lesson plans with accompanying resources. With Mary’s help, I implemented an editorial writing unit, and started with having the kids read a bunch of editorials, and I modeled identifying various techniques that the writers used. I conferred with each student about what they were trying to do. This process was much more productive than graphic organizers.  

The second thing that pushed me to change my teaching of writing was the book Study Driven: A Framework for Planning Units of Study in the Writing Workshop  by Katie Wood Ray. The premise of Study Driven is that students need immersion in the type of the writing that they are going to do. The examples need to be published pieces. 

I realized I already knew this from my own writing. When I wrote an article for Educational Leadership about my experience teaching for the first time in a high needs school, I first read several published articles about teaching. 

So, from then on, I structured writing units with immersion as the first step. When my ninth graders wrote their own Odysseys, we went back and studied how Homer began the Odyssey. When my eighth graders wrote biographies of someone in their family, first we read short biographies (picture books) of famous people. It made a vast difference in the quality of their writing. 

A few years later, another book revolutionized my writing instruction. It was An Ethic of Excellence, by Ron Berger. Berger describes a process that begins with students familiarizing themselves with the qualities of excellence in whatever they are going to make. Then the students do a first draft of the project, participate in feedback groups (after extensive modeling and whole class practice), and then repeat those steps until the student is satisfied that they have achieved excellence. (If you would like to see an inspiring example of this process, watch Austin’s Butterfly.) 

Joshua, my teaching partner at Highline Big Picture School, and I implemented that process with nearly everything the kids worked on. With writing, it was a perfect fit with what I was already doing with immersion. I had extensive experience with teaching how to frame feedback from my years as a facilitator of professional learning groups with other teachers. The immersion/identifying qualities of excellence and the multiple rounds of drafting and feedback, together with conferring with more experienced writers – either me or one of the volunteers I often had for big writing projects – was magical in improving student writing. Beyond that, it fostered a culture of multiple drafts. After all, that’s what professional writers do. 

I’m fortunate that I enjoy writing, because it’s the only creative endeavor I can do since I lost the use of my hands. When I decided to create a blog, I first read blogs from other people living with ALS. I learned that their blogs typically include a post about their diagnosis process, so I wrote one early on. I always write multiple drafts, and Barry gives me feedback until I’m satisfied that the post is ready to publish. The one thing I can no longer do regarding writing is teach. I miss it very much. 

Mostly Food; Sometimes Drinks

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

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

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

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.

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