Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

vegetarian

Skirmishes

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Dear people, do you know of the battle of the vegetables?
All is put before you.
The tomato rises up from the center:
“My food is famous, better than the eggplant!”

The eggplant responds:
“Be quiet, tomato.
You are not worth a penny.
Two days in the basket,
you are ready for the garbage!” . . . 

—from Si Savesh La Buena Djente (Dear People, Do You Know of the Battle of the Vegetables?)

A lot of vegetables will be clamoring for attention at our seder this Tuesday night. We host the second night of Passover, and there will be both tomatoes and eggplants featured—but not in the same dish, so no fighting at the table.

On Sunday afternoon, I set out to buy the freshest vegetables (and fruit, too) that I could find before the holiday. The weather was warming, the air pleasant. I backed out of the garage. Ca-chunk!  Not sure what that was about, I tested my brakes. All seemed fine, and on I drove.

That is, until the tire pressure gauge lit up about a mile down the road. I pulled over. Sure enough, I had a very flat tire. I drove carefully into a nearby parking lot, called AAA, then called home.

There was a time, long ago, when I might have tried to change it myself. In grad school, I once spent a very cold afternoon in a garage with one of my classmates, who taught me how to tune up my old Chevelle. It was fun. My hands froze, but this was long before I knew I had any medical issues.

Much as I wished I could have saved time, there was no way I would now attempt to change the tire with my hands so damaged by scleroderma. Instead, Al came to the rescue, traded cars with me and waited for AAA to arrive, while I headed off to the market.

Already behind schedule, I got there about 1:30. Never go shopping for vegetables at a Wegman’s on a Sunday afternoon, especially before a holiday week. The produce section was mobbed. Mesmerized shoppers wandered amidst rainbow mounds of fresh vegetables and fruits, sniffing and squeezing, checking for ripeness and price, with many near misses between shopping carts. “Pick me, pick me!” cried the delectable produce from their artful displays—all except the organic strawberries, on special, which had been snatched up long before I arrived.

Fortunately, the eggplants were piled at one end of the produce section and the tomatoes, at the other. I assume the produce staff are well aware of their rivalry and keep them separate.

I resolutely stuck to my list—except for picking up a bag of lovely, multicolored fingerling potatoes. One more easy side dish of roasted veggies certainly won’t be a hassle, right?

On my way to check-out, a seductive display of fresh plum tomatoes nearly broke my resolve. But I reminded myself that it would be so much more hand work to peel and seed them for the Prassa Yahnisi (Turkish Braised Leeks and Tomatoes), rather than use the Kosher for Passover canned variety that Al had already bought for me. Plus, I didn’t trust them to be sweet enough this time of year, no matter where their place of origin.

Yes, yes, I know. Sorry tomatoes, I’m afraid the fresh eggplants won this round. Maybe next year.

But . . . did you have anything to do with that flat tire?

Note: You can read the entire translated Ladino poem, Si Savesh La Buena Djente—and find wonderful vegetarian recipes for Passover and year-round—in Olive Trees and Honey: A Treasury of Vegetarian Recipes from Jewish Communities Around the World, by Gil Marks (Wiley Publishing: 2005).

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com

Feast of Freedom

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My hands are in pretty good shape today. A blessing, because I spent all of last Thursday and Friday cooking our annual Passover seder—a five course extravaganza that I manage to pull off each year.

I’ve evolved the menu over decades, based on what works, what doesn’t and what everyone asks for and complains about if I don’t make it. For the past few seders, I’ve switched from a meat-centric meal to fish and vegetarian entrées, creating a new challenge to find great recipes for guests who still wish I’d make that brisket.

And I’ve tried to modify my approach to accommodate my hands, which I’ve managed to wreck a number of times in the past when I went overboard with elaborate menu planning. I pace myself through two days of cooking, choose recipes that are fairly simple but taste terrific, and always wear disposable vinyl gloves to protect my ulcers as I cook.

Al serves as sous chef and kitchen first mate, helping with all of the chopping, slicing, jar-opening, package-ripping, utensil-retrieving and the many, many, many rounds of dish-washing and drying as I power through preparation of each dish. I could not do this meal without his help. Not to mention the fact that he takes care of the huge task of switching over our kosher kitchen to our Passover dishes.

But for all my planning and experience, on Thursday I was struggling. My hands were killing me because much of our Passover cookware is old and cheap (no point spending money on stuff you use only eight days of the year), and harder to handle than our regular kitchen utensils. By the end of the evening, after I’d worn out my right hand from folding all the meringue into the spongecake batter, I sat down, exhausted, and wondered why I was doing this to myself once again.

I could simplify the menu—this year’s included Egyptian haroset, a paste made of dates, raisins and filberts; pickled salmon; Persian cucumber and yogurt soup; a Moroccan salad of fresh oranges and greens with a cinnamon dressing; a main course of Turkish leek patties, Moroccan eggplant and tomato casserole, and steamed asparagus; and apricot sponge cake, strawberries, grapes, figs and chocolate for dessert.

It’s a lot of work. But the truth is, much as it takes a physical toll, I don’t want to give it up. The meal was wonderful. Everyone loved it. There were barely enough left-overs for our Sunday night supper.

My bottom line is this: I just don’t want to give in to my scleroderma. I am incredibly stubborn, a perfectionist and, yes, a card-carrying control freak when it comes to anything I’m creating.

In Gabriel Axel’s 1987 film Babette’s Feast (based on a story by Isak Dinesen), the heroine, a French refugee who becomes the cook and housekeeper for a pair of Danish spinster sisters, creates an exquisite meal for them and members of their small, austere church community, to thank them for sheltering her over the years. I won’t spill the delicious secret twist that’s revealed at the film’s end, except for Babette’s concluding line: When the sisters realize she has spent all of her money to create her amazing gift of a meal, she answers, “An artist is never poor.”

Creating a wonderful meal for people you love is an art form. It’s nourishment wrapped in beautiful presentation and delicious flavor. It’s a gift that makes everyone feel good, that enhances sharing, conversation and connection. For the Passover seder, it’s also a reminder of all that we have to be grateful for, living in a free country. I don’t entertain often because of my hands. But when I do, I go all out. And I’ll keep doing so as long as I’m able.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

 

Why I Don’t Eat Meat but Still Wear Leather Shoes

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Living amidst abundance, graced with super-sized supermarkets that devote an entire aisle to the vast variety of mustards and ketchups Americans supposedly crave, we struggle with the luxury of choice: What to eat?

Years ago, I decided, out of religious commitment, to follow Jewish dietary law and keep a kosher home. No more ham-and-cheese sandwiches or shrimp cocktails. I didn’t really miss the forbidden foods, and the discipline gave my life needed structure and spiritual focus. In recent years, I’ve added a new requirement: stay away from meat.

In part, my reasons involve how my scleroderma makes it harder to eat meat. This is personal. There is, to my knowledge, no definitive research about the best diet for people with scleroderma.

I’ve simply learned over the years that if I ate red meat, I’d wake up in the middle of the night with indigestion and reflux. Sometimes, I’d aspirate the reflux and sit bolt upright out of a deep night’s sleep, gasping for breath. Not worth it, even though I used to love brisket.

I also find red meat difficult to chew and swallow. I’ve had a few decayed molars extracted because I can’t open my mouth wide enough for my dentist to fill cavities in the back. Sluggish esophageal motility has more than once caused me to gag on meat that I couldn’t chew completely. So, dense foods are problematic. But I have zero interest in pureeing my food, as some recommend. There are plenty of creative, nutritional alternatives for these issues without resorting to pablum.

Those are the pragmatic considerations. My decision to eliminate all meat from my diet is also ethical, inspired by my daughters while they were still in high school. Mindi, our oldest, was the first to disavow meat after learning how animals are abused when raised for slaughter. Emily, our youngest, came to the same conclusion about a year later after attending a week-long seminar on animal rights.

Between hearing what they had learned and expanding my repertoire of nutritious vegetarian meals for growing adolescents, I decided they were right. The cons simply outweighed the pros. An added benefit, going vegetarian significantly simplified our kosher kitchen, since we now only needed one set of dishes, instead of separate sets for meat and dairy.

That said, I am not a vegan, nor am I a pure vegetarian. I still eat fish because of the health benefits of anti-oxidants, but I’m seeking affordable resources for fish caught in the wild. I also take fish oil every day, which has significantly helped me fight colds.

And I still wear leather shoes. My feet are difficult to fit and require custom orthotics, because the fat pads have thinned due to scleroderma. There simply aren’t enough comfortable vegan shoe options with removable insoles, made from materials that breathe and won’t cause my skin to break down. So, this remains a compromise.

For me, the shift toward vegetarian eating has been an evolving process. The first step was giving up pork and shellfish, and separating meat from milk, as a daily reminder of my religious values. This is the next major ethical step I’ve made in redefining my diet.

I have friends who are vegetarian purists, who won’t eat “anything with eyes” and who won’t wear leather. I admire their commitment.

But even as I try to honor the rights of all living creatures, hoping to do my part to create a humane world, I also need to put my health first. Without it, I’m no help to anyone, least of all myself. So, for now, I’ll stay away from meat, but keep eating fish and wearing leather shoes. Not the ideal solution. Not yet.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.