Janice Dvorak received her MFA in Creative Writing from Emerson College. A former RN and childhood cancer survivor, she is writing a memoir about the long-term effects of cancer treatments. She lives outside Boston with her husband.
A chirping voice interrupts my late-afternoon nap. On TV, a woman is much too happy about chopping vegetables. "Shut up," I say, but can't muster the energy to reach over to the coffee table for the remote. "Idiot." I am addressing us both.
I've always hated napping. I wake cranky and disoriented with a persistent grogginess. I have "late effects," which are conditions that may arise decades after cancer treatment. Radiation and chemotherapy for Hodgkin's Lymphoma in 1977, when I was 16, have caused me to develop such conditions as muscle and nerve damage, autonomic insufficiency, cognitive impairment, and restrictive cardiomyopathy, a form of heart failure. The only cure is transplant, but my suppressed immune system and chestful of scar tissue disqualify me. Doctors say my body is fifteen to twenty years older than my chronological age. At 43, I should get a senior citizen discount.
I've had to curb the tendency that cancer survivors have to push ourselves, deny limitations. My body can't handle exercise and lack of sleep anymore. My cardiologist ordered me not to exercise. I'm like a bald tire. The slower you go, the longer it lasts. So when my limbs feel leaden and I can't hold my head up I remind myself that these naps help boost my feeble immune system, rest my weakened heart, and make it possible for me to spend more time with my husband Greg at night. Some days I nap once or twice; some days are a continuous fog of sleep.
For white noise, I leave the TV on. Even though-or maybe because-I no longer cook much, the food channel meets the requirements for nap-background: no plot to lose track of as I drift in and out, no waking to screams and blood spewing in an action flick. Cooking shows are usually relaxing. Except for this maniac. Maybe no one should be that ecstatic about chopping onions, but I'm mesmerized. I remember being that happy about cooking. I want to be again.
I've never been much of an eater, but I love feeding people. Most of all Greg. For years, I mourned the loss of cooking for him perhaps more than the ability to work or run or dance. I've never been an inspired cook; I need a recipe to follow, I can't improvise. But I was never happier than when I placed a meal I'd prepared before my husband, family, and friends. My father's first language was Italian, but the first, and for a long time only, Italian word I knew was mangia, eat. In our family, both the Irish and Sicilian sides, you fed the people you loved. And if you couldn't or didn't cook (which on the Sicilian side of the family meant you were too young and/or male), you showed your love by eating. A picky eater, I learned to skip meals before visits to my grandmothers' homes so I could eat enough to keep my Italian Nana from wailing and hand-wringing and my (devout Catholic) Irish Nana from cursing.
Sadly, I learned nothing about cooking from either grandmother. My Italian nana spoke no English and died when I was eight. My Irish nana wasn't much of a cook and didn't enjoy it. My mother taught me a little, but preferred to work alone in the kitchen and saw cooking as a chore. I can't remember a Thanksgiving or Christmas that she didn't sit down and announce that after slaving so hard over the meal, she had no appetite. But she took pride in feeding her family and kept control of her kitchen. When my older sister Denise and my father required specialized diets, Mom became an expert in cooking within their restrictions and created recipes the whole family enjoyed. Her food, she believed, could keep them well. She swore that she would get my father off the dialysis doctors said would be lifelong. It took her a month. She credited her cooking and though the doctors said this was impossible, they had no other explanation.
I couldn't decide if the miracle came from her fierce will or the magic of food prepared with love or both. I just knew in my family, when all else failed, food could fix the problem. When I was twelve, we visited Massachusetts for the first time since moving to Florida a year and a half earlier. In that time, my Irish Nana had become bedridden and no longer knew any of us. For almost an hour, I sat by her bedside, telling her my favorite memories of her. When I couldn't keep from crying, I kissed her and fled to the parlor. I flung myself onto the couch sobbing, only noticing my father in a wing chair when I heard his newspaper crinkle. He lowered the paper and peered at me, prominent Roman brow furrowed, but I couldn't speak. I waved my hands to show he couldn't help; I just needed to cry. He raised the paper again, but after a couple of minutes with no sign that I was stopping, he looked around helplessly. Spying a plate of Oreos on the coffee table, he asked, in a soft, Daddy-voice, "Do you want a cookie?" From then on, when anyone in my family cried, you were offered a cookie.
I keep watching cooking shows. I watch perky chefs and serious chefs, flirty chefs and dueling chefs. The more I watch, the more I miss chopping and simmering, baking and garnishing.
When Greg and I first married, I cooked almost every night. I figured out early on that he couldn't cook. He said he'd made Shake and Bake a few times in college and could boil pasta. I lived on frozen yogurt and brown rice, but once I got engaged, the women I worked with insisted I learn a few recipes. They taught me dishes from their countries: Jamaica, Cuba, Thailand. Inspired, I planned weeks of menus, limiting red meat and cooking healthful, delicious meals. I was going to save Greg from the takeout meals and frozen pizza of his single days.
One night, Greg came home before I'd started dinner. "Sit and relax," I told him. I gazed into the refrigerator and gave him options for our meal. Orange chicken, turkey burgers, penne with peppers.
"You don't have to cook," he said. "I can have a frozen pizza."
"It's no trouble. I can have something on the table in an hour or so. Just tell me what you want and go take your shower."
"No, take a night off," he said. "I'll have a frozen pizza."
We went back and forth a couple of times, then Greg asked, a note of pleading in his voice, "Please can I have a frozen pizza?"
I laughed, closed the fridge and twisted the oven knob. "I'll preheat the oven."
After that, one night a week was frozen pizza night but other nights, I cooked a good meal. Greg always offered to help, but I'd decline. He worked longer hours than I did; I wanted him to come home and rest. I wasn't trying to have a 1950s household, but Greg wasn't comfortable in the kitchen. I made it worse. We'd been married a month when I was taking a shower and heard what sounded like a sledgehammer hitting the bathroom wall. Swabbing at the water and suds dripping off me, I ran to the kitchen, where Greg was calmly emptying the dishwasher.
"What was that?" I cried.
"What was what?" He smiled. "Naked woman. Niiiiice."
"That noise. You must have heard it. There were these crashes…"
Greg looked at the pantry, which shared a wall with the bathroom. "Oh, I was putting away some pans. That closet is really cramped. I had to shove 'em in there."
I stared. "Get out of my kitchen. Stay out of my kitchen."
I was only partly joking and he knew it.
As the years passed and my as-yet undiagnosed health problems worsened, I cooked fewer nights a week. Some weeks, there were two frozen pizza nights. We also had veggie burger night, when Greg manned the microwave, and breakfast night—usually Saturday—when we'd have Greg's scrambled eggs and toaster pancakes. Sunday meant "slime," the spinach fettuccine Greg loved. Early in our marriage, I'd simmer up a pot of tomato sauce my Sicilian Nana would have approved of. Later, Greg would pour whatever bottled sauce was on sale that week, unheated, over the green noodles.
I'd thought the situation was temporary. I'd cook when my flu was over, when the semester ended, after the holidays. As doctors began to diagnose late effects, it made sense not to use my energy cooking when Greg could fix something simple. We aren't really "foodies" anyway. We can eat the same breakfast and lunch for years. Every day, to save me energy and to make sure I eat, Greg leaves me a PB&J in a Ziploc bag. Going out to dinner isn't the treat for us it is for most people. And we don't eat much. A package of cookies, even Oreos, lasts months. Greg had enjoyed my cooking, though. He looked forward to certain dishes. He'd grown up on Southern casseroles and once said, "I love that all the food is separate."
Now I want to cook for Greg again. He's uncomplainingly taken over most of the housework, shopping, and errands. He pays the bills, now both by earning the money and writing the checks. He works long hours and has a 50-minute commute each way. I want him to come home to a delicious home-cooked dinner.
For months, my doctors and therapists and I have been working to improve my quality of life. My atrophied upper body and shoulder muscles can't be built up and the nerve damage causing, among other things, arm and leg weakness, is untreatable, so we've focused on adaptive equipment and energy-saving techniques. After the first few sessions, they warned me to expect only minimal gains. In practical terms, the gains have been small, but feel huge. I marvel at being able to read a few pages of a book at night without falling asleep. Doing three errands instead of having to abandon the first, because I use a folding cane/chair in lines and park in a handicapped spot, feels like a victory every time I do it. I can shower without passing out because I use a chair now.
A week after I saw the chopping maniac on TV, I ask my occupational therapist if we can work on cooking. Laura hesitates. We've been working on writing and grooming tasks. She has seen my heart rate skyrocket after I stand for a few seconds or reach above my head. Adding something back into my day will be a challenge. She says, "We can try some exercises that deal with cooking tasks into our sessions, but remember, it's all about budgeting your energy. Prioritizing."
Before Laura can add cooking exercises into the mix, I print a simple recipe off the Internet. I drive to the grocery store, singing a nonsense song about feeding eggs to Greg while the cat begs for chicken legs. Halfway through the store, my extremities are numb and I am short of breath. Doubled over the cart, I realize I can't make it down every aisle.
I used to love food shopping. I'd go early in the morning, and stroll every aisle. I made a list, organized by aisle, and sorted my coupons. I was still working so I shopped on Saturdays. Greg and I would put away the groceries, then eat the cinnamon rolls I'd bought, the whole weekend together before us. At some point, I must have lost the stamina to complete the food shopping. But again, I had blamed my busy schedule and sent Greg to the store or take-out places on his way home from work and resorted to frozen entrees
I drag myself through the store for the last items, then sit in the car gasping for air, hoping the meat won't spoil and eggs don't hatch in the time it takes to gather enough energy to drive home. For the first time, I foresee a day I have to stop driving.
But I make it home and cook a good meal. Greg is pleased, but not surprised. Every few weeks, I have managed to fix our dinner, but using convenience foods, which, thanks to my nanas, I don't consider cooking. As we eat, I ask what he would like for dinner later that week. "I'm thinking of trying this chicken recipe I saw. It's got salsa and potatoes."
"Only if you feel up to it."
Greg says that often. Now I realize that he has said it for years. It's his response to anything I say I'm going to do. Afraid I push too hard, he's encouraging me to put my health first. It's my fault for often overdoing it, for attempting to do too much and failing. Before my diagnoses, I'd believed if I could just try harder, I'd be strong again, normal. Even now, when I know better, I still fall back into the old patterns of trying to do what is no longer possible.
"Greg, I know you mean well, but can you not say that anymore?" I am shaking.
He looks stricken. "I'm sorry."
"No," I say. "Don't be. I know you're just worried and you want to help, but when you ask if I feel up to it, I just remember why I'm not. It's just…always there when you say that."
We agree that from now on, if I say I am going to do a chore, he will assume I feel good enough to try it. I promise to stop if I get too tired or my heart feels strained. I'll try to stop feeling guilty when I start something I can't finish. And when Greg has to take over, I'll understand he is glad to do it, as I would be if our situations were reversed.
Ok," I say. "So what do you want me to cook this week?"
Laura teaches me to slide bowls along the counter rather than lift them and to hold my arms close to my body when stirring. After I almost knock out a tooth when I can't hold a skillet I'm lifting down from the cabinet, Greg and I buy an extra step-stool to keep in the kitchen. I slip thick foam sleeves onto the handles of utensils. I learn to get down the pots and pans early in the day, then rest. Then gather the non-perishable ingredients and rest again. I chop in stages, sitting on a tall stool. We buy a food processor and standing mixer, lightweight dishes, utensils recommended by the Arthritis Foundation, and the best knives we can afford. Greg does most of the grocery shopping and calls every night before leaving work to ask if I need anything. I buy produce and meat, things I prefer to choose myself. I make two short visits to the grocery store each week instead of one long one. It all works together. After a few weeks, I am cooking simple meals three or four nights a week.
Mostly, I still decline Greg's offers to help, sometimes even snapping at him if he offers too frequently or tries to take the initiative and perform some task he sees me struggling with. I've been that person, frustrated with my sister, who suffered from complications of juvenile diabetes, for doing more than she should, hating myself for not helping, hating myself more for taking her autonomy away and doing something for her against her wishes. It's a terrible position to be in, but I can't manage to make it easier for him.
One Sunday evening, as Greg clears the table, I ask what meals he wants for the upcoming week. He's stopped assuring me I don't have to cook, but it still takes repeated urging before he'll request a particular dish or ingredient. "Greg, I love cooking for you. I want to make things you enjoy. So, what vegetables have you been wanting?"
"How about okra?"
Yum, sautéed mucus. "Ok, I'll get some steaks to go with it. What else? Ooh, how about tomorrow night I make Chicken Satay?"
He looks at me blankly.
"It's the stir-fry I make with the peanut sauce." He thinks about it. "I make rice with orange zest to go with it…? We have it like once a month?"
"Oh, I love that."
I am struck with a vision of Greg in our kitchen after I am gone, sliding a frozen pizza into the oven, microwaving leftover takeout. It's not the worst fate, and he isn't a picky eater, but he'll miss the meals I make him. He likes okra cooked with tomatoes, onions and corn, but you can't buy it like that. I've ruined him for cardboard pizzas; now he'd miss my Pizza Margherita with fresh basil, mozzarella, and plum tomatoes. I don't want that for him. If I can't be here to make his favorites, I'll teach him to make them himself.
The next day, I hit the Internet to find simple recipes with only a few common ingredients and easier versions of his favorite dishes. Cooking isn't hard. If I can make feasts feeling the way I do, he can handle the basics. He learned to make a good cup of tea for me and his scrambled eggs are better than mine. I know "low and slow" is the rule; Greg has the patience to follow it.
Instead of the VH1 Countdown to accompany our Sunday morning coffee, doughnuts and newspaper ritual, I put on cooking shows. I point out techniques to Greg, ask if he'd like me to cook a dish we've seen.
I let him help more in the kitchen, timing tasks around his arrival time. Before he showers, I ask him to get down a bowl or open a can. I put the pasta to boil as the shower turns on so he can drain the pot I can't lift. I repeat the name of each dish and explain what we are doing. "When you zest the lemon, don't go to the white part. That's not zest, and it's bitter." I put the recipes we make together in a three-ring notebook I keep on the dining room table so he can page through it. Always eager for information, Greg seems receptive. He'll be fine. Soon he'll be able to make all his favorite meals.
After a couple of months of lessons, Greg comes home from work and drops his insulated lunch bag on the table. I unzip it and peer inside. On Fridays, he sometimes brings me a blueberry muffin from his job. I rummage through, finding a half-eaten sandwich, small bottle of Vitamin C, ten or so Post-it notes, his cell phone. Greg looks up from the mail. "They didn't have any muffins left."
"That's ok," I say. "Nice purse."
"Huh?" He kisses me, then gazes down at the cutting board.
"Well…" I tick off the contents. "It's a purse."
"It's not a purse." He bends to sniff at the herbs I've chopped.
I ask him what they are; he sniffs again and shakes his head. "Cilantro," I say. "I have less stuff in my purse." I peer into it again. "Geez, where's the lipstick and hairspray? This is a purse."
"I had a lot to carry." He points at his gym bag and the newspaper he dropped in the hallway. "I threw my cell phone in there just to get it into the house." He shakes his head, grinning. "It's not a purse."
He gets between me and the bag and zips it up. "What can I do to help?"
A lesser man would make me admit his lunch bag isn't a purse before offering. But Greg halves small red potatoes as I asked, then goes to shower.
When I hear shower turn off, then the creak of the stairs, I start singing along with the radio. Sometimes I show off for Greg, singing as though I'm back in one of the bands I sang with during the 1980s. Greg met me long after I'd stopped singing, but just before my health started to decline. Back then men were still jumping out of their cars in the rain to pump my gas and lining up to dance with me at clubs. I don't look like that anymore. I grew my hair out so it doesn't need to be styled, and seldom waste energy applying make-up. I look washed out, exhausted, plain. Greg doesn't care, I know. When I look my worst, he calls me "my beautiful Punkin." The more my hair sticks out of hastily constructed twists, the more he likes it. He wouldn't think more of me if he'd heard me sing onstage, when my voice was strong and clear.
But I wish he'd known me at my best. Hell, I want him to remember me better than I ever was, to balance out what I'm becoming. I want him to remember me strong and silly and hyperactive instead of washed out and breathless, forgetful and listless. I should know better. I remember my parents and sister all the ways they were-young and happy, dying, dead, images and memories from all the ages that I knew them. I can't know or control what Greg will remember of me. But I am certain that as we cook together, we are making memories. I hope someday the smell of garlic or rhythm of chopping brings me back to him.
The song ends and I quiz him on the name of the meal we are making. He looks at me.
"Huh. Chicken something?"
"Chicken Satay," I point to the peanut sauce. "The sauce is the 'satay' part."
He hasn't been paying enough attention. He hasn't learned. His focus is still on helping me while mine is on teaching him. I am leaving him so little. I have given him no children, too few years together. I look down at the cat and say, "You better live forever," surprising us all.
Greg looks pained. "Oh, Punkin."
"You know, Greg, you could make this dinner."
"No, you could. I swear." As we eat, I tell him what I've been trying to do. That I've been trying to teach him to cook so that, no matter what, he won't starve or eat tasteless, unhealthy meals. "I want you to learn to make a few things. Just a few. The things you like best."
"I don't want to think about that." He puts down his fork.
"You don't have to. Just…let me teach you. You don't hate cooking anymore, do you?"
I take a cheap shot. "Give me this, Greg. Let me take care of you. Ok? Let me teach you."
And so he gives me yet another thing.
Fall is chilling into winter, but the kitchen is warm. Tonight we are making quesadillas, because I found red peppers so plump and satiny and bright I wanted to take every one of them home. And because Greg loves them and they are easy to prepare. Together, we chop the peppers and scallions, drain and rinse the black beans, cut the corn from the cob. I show Greg how to blister tortillas in the grill pan, then sink onto a stool, where I talk him through sprinkling everything onto the tortillas, explaining why they go in the order they do, and remind him it's all in the recipe hanging from the cabinet.
"They look done?" Greg asks.
"You're the cook," I say. Not "chef." That would reinforce the idea that cooking is difficult, that he's not skilled enough. I have to give him confidence.
"Another minute or so"
"I think you're right." I can hop up if he needs help getting the quesadillas off the grill pan. It's the simplest thing, but Greg isn't good at flipping or lifting with a spatula. You'd think the food and the spatula carried the same electrical charges. We're working on it.
"They're ready," Greg says, white-knuckling the spatula. At the last second, he looks at me. "You think?"
As he struggles to get the quesadillas to our plates, spilling corn kernels and beans in the pan, onto the range and somehow the floor, I praise him.
"You did most of it," he says.
"No, you did a lot. And I couldn't do any of this anymore without you." I don't know if I'll be able to help at all in a few months. Or if I'll be around to witness his first truly solo effort. Maybe I'll get years. Maybe not. But tonight we will eat well.