A little like a C.S. Lewis story
Updated: Aug 13
Somewhere in the mess that is “dining room school” (named for the newest use of the most formal room in our house we don’t use) I found my daughter’s essay notes about what she’s been doing during the pandemic and isolation. I was surprised at what I read.
She wrote the first two paragraphs about how we’re “saving food” during the pandemic. Good start, but I’m still not sure what that means or how we’re doing that. I think she’s writing about Power Outage Season here, so whatever is on the counter gets eaten first and we don't have to open the fridge and lose the cold inside. The counter is where I store much of my produce during this season, hoping that it gets picked before the bags of Lindor chocolates also sitting there. I imagine in my daughter's mind "saving food" means that we’re saving the good stuff for after the pandemic. “The chicken nuggets and french fries are for postseason eating, honey, right now we have to eat curly kale and mini bell peppers. Do you want some room temperature hummus to go with it or peanut butter?”
But she finally concludes in her essay, “we’re eating what we can and eating leftovers.” I need to mention that this essay is being forwarded to the local historical society for future researchers of the 2020 Pandemic. Additionally, you learn that my husband is working from home and once in a while comes down for a snack.
Oh, now it all makes sense.
All of this talk of food gave me the idea to finally learn how to eat for MS while post HSCT (edit: I just erased several sentences here where I started to place judgment on claims that natural supplements and vitamins are “curing” MS. I am actually going to work on compiling a list of solidly-researched diets, supplements and foods that will help alleviate symptoms, because I do believe in homeopathy to alleviate my MS symptoms. But they do not cure this disease). I’ll just tell you that I did my homework and studied the science behind the most popular sources of food-based treatments for relief of symptoms and in the end, chose one because I have an MS friend who does it and she is kicking ass and looking great. Because we all know that if you look good with MS, you can’t possibly be suffering from the disease, right? Ask anyone.
All of us who have MS have the unfortunate problem of memory loss, to some degree. Some of us can’t seem to remember what we were talking about in the middle of a sentence. Some of us struggle to conjur up an image of feeding the kids breakfast this morning. But we are completely aware of what we’re losing. We lose feeling in our bodies, our mobility, our sight, our job, time, and our bib numbers at the marathon.
And now, we lose the ability to open up our pantry and grab. I’ve now lost comfort eating, boredom eating and by-the-clock eating. The three main food groups.
But I will adapt, I’m sure. Every single person reading this during the pandemic is fully aware of what it takes to adapt. I know that as I continue adjusting my diet, my body and this disease will adapt. Maybe losing legumes means I don’t have as much cog fog. Maybe losing my favorite squash will help with the spasticity in my legs and feet.
When I had my treatment--2 YEARS AGO HOLY SCHNIKIES!-- I was prepared to lose. And I mean more than just my hair. When fighting a potentially progressive and definitely chronic disease, you have to prepare for losing ability. This is a truth any MS patient faces no matter which disease modifying treatment they chose or how many years since diagnosis. For now, I have won the long term disability battle through HSCT, because my disease has not progressed (remember, that was the goal). But I was ready to lose. Loss is a part of MS life and didn't go away after HSCT.
I’ll keep you posted on how all of this new eating all works out. Maybe when you see me next, in the fall of 2021 when this is over, I’ll have eaten my way to less fatigue. I should also mention that I subscribed to online yoga classes and writing seminars and so perhaps when you see me after the pandemic of 2020-2021 I’ll be able to do a back bend and will have published a best seller about a woman who’s magical vegetable garden takes her away from an onion-bagel-filled dystopian life to a world filled with sulfury vegetables where people remember everything and aren't tired.
Until then, keep inside, keep going, and keep adapting. This will be over soon and we can all stop eating off the counters.