I found my wife Anna at her desk working on her computer.
“I’m going to start cooking for both of us,” I told her.
She continued to work as if I told her that the sun was out, not that I was doing another chore.
“Well, what should I make you for dinner?”
He stopped writing and looked up.
My vision deteriorated to the point where I could no longer see her face unless I was an inch or two away from her.
Their expressions, from playful to loving to fierce – the silent language of our 40-year relationship – were hidden behind fields of gray and distortion caused by an incurable genetic disease.
When I was 8 years old, almost 60 years ago, I knew I had it elastic pseudoxanthoma (PXE), a rare, inherited disease that causes calcification of the skin, eyes, and arteries.
About 150,000 people worldwide have PXE, and many of them suffer from varying degrees of PXE-related vision loss.
I turned my head slightly, trying to read Ana’s expression with what was left of my peripheral vision as I watch movies on my iPad.
“Is that your face? angerhe asked.
“I’m trying to get our taxes done before my head explodes and you’re pissing me off, so yeah, that’s my angry face.”
“Fine. Just tell me what you want for dinner.”
I heard a sigh and saw his hand rise from the gray field.
He took off his glasses, letting me know that I was about to get a lecture, some unsolicited advice, or be told to take a long walk down a short pier.
“You want me to surprise you, don’t you?” I asked.
“You are very perceptive.”
“No, I just have long married”.
I heard the smile in his voice when he said, “Yeah, me too.”
Then, as I entered the kitchen, he added:
“Please don’t make Harper’s chicken!”
When we were raising our three children, I never made anything more than sandwiches, quesadillas, eggs, grilled meats, and pancakes.
If pressed, I would resort to the dishes I learned from my mother, spaghetti or “Harper’s Chicken,” fully baked and slathered with Campbell’s Mushroom Soup.
I’d like to blame these minimal skills on my inability to read a cookbook, but back then I was fully sighted and only had an aversion to housework.
Serious cooking seemed different a tedious task to someone married with children, just like emptying the dishwasher, shopping, making the bed and vacuuming.
Invariably, this suffering leads to clichéd marital fires:
Anna: “Why do I have to do everything?”
Me: “Hey compared to my father I do a lot!’
Anna: “Really? Is he your model?
He was right.
My father paid the bills and brought home a substantial income, but apart from making himself whiskey and water, he never did any housework.
He didn’t make coffee and sandwiches.
He never made a bed, swept the floor or folded a towel.
He was the breadwinner of the family and my mother was the housewife.
Like many boomers, Anna and I reject this archaic domestic construct, fighting for parity in our household duties.
It was my fault that this deal didn’t work out.
I avoided it, put it off for later, forgot about it.
She didn’t see the reward in housework.
I pretended to care about the household, I even tried to care, but I didn’t and it affected my tasks or lack of this performance.
When our nest was empty in 2012, the burden of housekeeping was lightened, but it remained a highlight of our marriage.
This was also the year that 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 into my central vision, the result of atrophy or cell deathtaking my vision one micron at a time.
The font score on my computer went from 12 to 18 to 36 to 48.
Even with the screen zoomed to 200%, I can barely read Final Draft, the screenwriting program that made me the most profitable in decades.
I identify most things by their shape, color and sound.
The toothpaste is a white tube, the antibiotic is yellow.
The shampoo is in the round bottle, the conditioner in the narrow one.
My sons have three sizes: regular, tall and extra tall.
But when they sit on the couch, I have to wait for a voice identify them.
Bills, insurance forms and financial statements are a confusing soup of letters and numbers.
Even with zoom tools, Internet activities cause him to utter vulgar profanities.
I don’t watch movies with subtitles anymore.
Anna reads me the menus.
My phone is full of audiobooks and podcasts.
I don’t drive anymore. I’m going on foot.
Or I ride my bike, very slowly.
In the kitchen, I can control the hotplates and oven without burning myself, but knives are difficult.
I’ve cut my fingers more times than I can count.
The internal pact that Anna and I negotiated, renegotiated, and fought in our quest for equality ultimately settled on a list:
“What can Sam do with his bad eyesight?”
And this list includes all tasks that were a decade ago striking.
While Anna takes care of our finances, insurance, travel plans, and driving, and that includes the five hours back to my scheduled injections in Santa Rosa, I do the laundry, make the bed, shop, wash the dishes, and, yes, vacuum.
Now I was adding kitchen to this list.
My dinner plan found our fridge almost empty.
I saw oat milk (grey), half cream (a quart-sized container), a stick of butter (rectangular, as opposed to triangular Parmesan), four tangerines (too small to be orange), two bags of assorted leaves, sticks of celery
I counted half a dozen eggs and a container of yogurt (yellow, so not sour cream).
Pantry: dried beans (bigger than lentils), pasta, onion, garlic, avocado, french fries (brown bag), and a can with a picture of what used to be an artichoke heart or mushroom.
In a salad bowl on the bar: garlic, onion, apple (or was it red onion?).
I considered biking to the Palace Market in Point Reyes for groceries that would make my cooking debut a little more sophisticated, but I still haven’t memorized the store layout well enough to make an efficient purchase with poor eyesight.
A trip to an unfamiliar market takes time to annoy the sellers and walk the aisles, pressing my face against the shelves and labels.
That would take up time that I didn’t have because I can’t ride my bike after sunset.
My first meal as head chef must be basic:
salad and onion and cheese omelette.
I put the ingredients in the salad bowl so I don’t have to go back for them at dinner, rummaging through the cupboards and fridge like the blind man I’m becoming.
Anna reminds me that despite self-help memes saying so, illness is not a gift.
The gifts are free; those affected pay for their illnesses with painful treatments, mood swings and micro-humiliations.
That said, sickness provides the gift of insight.
At the end of my life, PXE changed my perception of housework, one micron at a time.
Over the years, even chores like vacuuming have turned into meditation about agency and purpose, the things that disability tries to steal.
In humbling myself to this work, I find the moment, and in finding the moment, I see my place in the universe, and that gives me peace.
These tasks have become as precious to me as what remains of my vision.
On good days, homework is even fun.
Emptying the dishwasher is mine morning tai chias I reach for the glowing cup and then reach for the empty shelf and fill it.
Sweeping is a dance.
Folding clothes is origami.
Our double bed is a still life canvas of colorful pillows and blankets.
As I work, I repeat one of my many low vision mantras:
by doing I can be. And being is the best reward.
Anna: “Sam, I need you!”
Anna had our tax forms printed and organized on the dining room table.
“You must sign,” he said.
I sat next to him. He handed me a pen and directed my hand to the appropriate boxes.
“What are you going to make for dinner?” he asked, his hand still on mine.
I closed my eyes, surprised by the rush of emotions the question and his touch had brought on.
Sadness, joy, and gratitude illuminated the bumpy, bumpy road of our long relationship and made me see something else.
In this community of two, the work we do for each other, with each other, it is communiona commitment to mutual understanding, unity and love.
I’m sure Anna knew all along, but I had to lose my sight to see it.
Sam Harper is a writer living in Inverness, California and New York. He recently completed writing a memoir about his experience with PXE and vision loss.
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