Fashion

Please Let Me Do More Laundry and Vacuuming!

Visits: 26

For decades, I avoided domestic tasks. My failing vision has made me cherish them.

I found my wife, Anna, at her desk, working at her computer.

“I’m going to start cooking for us,” I said.

“Great.” She continued working as though I told her the sun is out, not that I was taking on yet another domestic task.

“So, what can I make you for dinner?”

She stopped typing and looked up.

My vision has deteriorated to the point where I could no longer see her face unless I was an inch or two from it. Her expressions, from cheerful to loving to furious — the silent language of our 40-year partnership — were hidden behind fields of gray and distortion caused by an incurable genetic disorder. When I was 8, nearly 60 years ago, I learned I had pseudoxanthoma elasticum (PXE), a rare and hereditary disease that causes calcification of the skin, eyes and arteries.

Worldwide there are about 150,000 of us PXEers, and many suffer varying degrees of PXE-related vision loss. I turned my head slightly, trying to interpret Anna’s expression with what’s left of my peripheral vision, the same way I look at movies on my iPad.

“Is that your pissy face?” I asked.

“I’m trying to finish our taxes before my head explodes, and you’re bugging me, so, yes, this is my pissy face.”

“Fine. Just tell me what you want for dinner.”

I heard a sigh and saw her hand rise into the field of gray. She took off her glasses, communicating that I would now receive a lecture, unsolicited advice or be told to take a long walk on a short pier.

“This is you telling me to surprise you, isn’t it?” I asked.

“You’re very perceptive.”

“No, I’ve just been married a long time.”

I heard the smile in her voice when she said, “Yeah, me too.” Then, as I headed to the kitchen, she added, “Please don’t make Chicken à la Harper!”

When we were raising our three sons, I never made much more than sandwiches, quesadillas, eggs, grilled meats and pancakes. Fun food. If pressed, I resorted to dishes I learned from my mother, spaghetti or “Chicken à la Harper,” a full roaster slathered with Campbell’s mushroom soup.

I’d like to attribute those minimal skills to an inability to read a cookbook, but I was fully sighted back then, afflicted only with an aversion to domestic tasks. Serious cooking felt like yet another tedious married-with-children chore, right up there with emptying the dishwasher, grocery shopping, making a bed and vacuuming. Invariably, this affliction led to clichéd marital conflagrations:

Anna: “Why do I have to do everything!”

Me: “Hey, compared to my dad, I do a lot!”

Anna: “Seriously? He’s your bar?”

She had a point. My father paid bills and brought home a substantial income, but other than making himself a scotch and water, he never performed domestic tasks. He didn’t make coffee or sandwiches. He never made a bed, swept a floor or folded a towel. He was the breadwinner, and my mother was the homemaker. Period.

Like many boomers, Anna and I rejected this archaic domestic construct, striving for parity in our domestic responsibilities. That this bargain didn’t go well was my fault. I shirked, procrastinated, forgot. I didn’t see the reward in domestic work. I pretended to care about home management, even tried to care, but I didn’t, and that was reflected in my execution of the tasks, or lack thereof.

When our nest emptied in 2012, the burden of domestic management got lighter but remained a marital flashpoint. That was also the year PXE accelerated its attack on my vision. Despite monthly injections of a blood vessel growth inhibitor in both eyes, gray fields and distortion crept from my peripheral vision toward my central vision, the result of the result of atrophy, or cell death, taking my vision one micron at a time.

My computer font grew from 12 to 18 to 36 to 48. Even with the screen zoomed to 200 percent, I can barely read Final Draft, the screenwriting program that for decades made me the primary wage-earner.

I identify most things by shape, color and sound. Toothpaste is the white tube, antibiotic is yellow. Shampoo is in the round bottle, conditioner in the narrow one. My sons come in three sizes — regular, tall and really tall. But when they’re sitting on a couch, I have to wait to hear a voice to identify them.

Bills, insurance forms and financial statements are a mystifying soup of letters and numbers. Even with magnification tools, internet tasks provoke loud expletives. I no longer watch movies with subtitles. Anna reads menus for me. My phone is stacked with Audible and podcasts. I don’t drive anymore. I walk. Or I bike — very slowly. In the kitchen, I can navigate the stove and oven without getting burned, but knives are tricky. I’ve cut my fingers more times than I can count.

The domestic bargain that Anna and I negotiated, renegotiated and fought over in our quest for parity finally settled around a list of “What Can Sam Do with Low Vision?” And that list includes all of the tasks I found soul-crushing just a decade ago.

While Anna does our finances, insurance, travel plans and driving, including the five-hour turnaround to my injection appointments in Santa Rosa, I have taken on laundry, bed-making, grocery shopping, dishes and, yes, vacuuming. Now I was adding cooking to that list.

My dinner planning found our refrigerator depleted. I saw oat milk (gray), half and half (quart container), a stick of butter (rectangle, unlike triangular Parmesan), four tangerines (too small to be oranges), two bags of various leaves, celery sticks. I counted a half dozen eggs and a container of yogurt (yellow, therefore not sour cream).

The pantry: dried beans (bigger than lentils), pasta, onions, garlic, avocado, potato chips (brown bag), and a canned item that has a picture of what was either an artichoke heart or a mushroom. In a salad bowl on the counter: garlic, onion, an apple (or was that a red onion?).

I considered biking to the Palace Market in Point Reyes for groceries that would make my cooking debut a bit more sophisticated, but I haven’t yet memorized the store layout well enough to do efficient, low-vision shopping. A trip to an unfamiliar market requires time to pester clerks and wander the aisles, pressing my face against shelving and labels.

This would take time I didn’t have because I can’t ride my bike past twilight. My first meal as primary chef would have to be basic: salad and an onion-and-cheese omelet.

I put the ingredients in the salad bowl so I wouldn’t have to hunt for them again at dinner time, groping cabinets and the refrigerator like the legally blind man I am becoming.

Anna reminds me that, contrary to self-help memes, disease is not a gift. Gifts are free; the afflicted pay for their ailments with painful treatments, mood swings and micro-humiliations.

That said, disease does provide the gift of insight. In my shrinking life, PXE has shifted my perception of the domestic task, one micron at a time. Over the years, even tasks like vacuuming have become a sustaining meditation on agency and purpose, things disability tries to steal.

In humbling myself to that work, I find the moment, and in finding the moment, I see my place in the universe, and that brings me peace. These tasks have become as precious to me as what’s left of my vision.

On good days, the tasks are even entertaining. Emptying the dishwasher is my morning tai chi, bending low for the sparkling glass, then stretching into the empty shelf and filling it. Sweeping is a dance. Folding laundry is origami. Our king bed is a canvas for a still life of colorful pillows and blankets. As I work, I repeat one of my many low-vision mantras: In doing, I can be. And being is the sweetest remuneration.

Anna: “Sam, I need you!”

Me: “Be right there!”

Anna had our tax forms printed and organized on the dining room table. “You need to sign,” she said.

I sat next to her. She handed me a pen and guided my hand to the proper boxes.

“What are you making us for dinner?” she asked, her hand still on mine.

I shut my eyes, startled by the swell of emotion her question and touch provoked. Sadness, joy and gratitude lit up the arcing, bumpy trajectory of our long partnership, bringing another insight into hard focus. In this community of two, the work we do for each other, with each other, is communion, a commitment to mutual understanding, unity and love.

I’m pretty sure Anna knew that all along, but it took vision loss for me to see it.

Sam Harper is a writer who lives in Inverness, Calif., and New York City. He recently completed a memoir about his journey with PXE and vision loss.

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