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Five days before my 21st birthday, I was told I had stage IV cancer in my lymphatic system and bone marrow, and that there was a good possibility I wouldn’t live to see 22. I spent an entire year in chemotherapy, sequestering myself at home to avoid people and infections. Not keen on losing so much of my life to cancer, I used my time at home to teach myself how to properly cook, and got my first kitchen job a few months after my last round of chemo.
Fifteen years later, I’m still standing but I’m not perfect. Chemo is not just toxic to cancer cells, but to all the body’s cells, and I began my twenties in a sticky vinyl hospital chair, watching an IV drip a titrated cocktail of poisons directly into my heart. I suffer excruciating bone pain when the seasons change, I’m severely anemic, and, you know, there’s really no such thing as “cancer-free.” The cancer could always come back. It’s a longshot at this point, but that doesn’t mean I don’t go through a slew of very expensive scans and tests every year, constantly looking over my shoulder at the bogeyman who is chasing me. I’m a marked woman.
I own a bakery with my husband. We do okay. We wrote a cookbook. We’ve invented an over-the-top viral dessert or two. We’ve enjoyed some minor fame. Still, it’s no secret that the service business is a notoriously low-paying industry with jobs that rarely, if ever, offer benefits. A 2014 report from the Economic Policy Institute revealed that while the restaurant industry accounts for approximately 9 percent of all private sector jobs, a massive proportion of U.S. employment, and nearly 40 percent of those workers are living in poverty. (This doesn’t include undocumented immigrants, whose off-the-books employment is estimated to make up 20 percent of restaurant and food-service labor.) Operating costs have gone up, while wages remain stagnant. In the past year, I’ve been offered catering gigs that pay less than they did when I started in this business 13 years ago.
The average cook in New York right now — suburban-transplant culinary school grads and working class immigrants alike — makes between $10-15 an hour, barely more than the minimum wage, and significantly under a living one. The economics of the restaurant industry makes it hard for this number to get any higher, even if owners want to pay people more — there’s only so much customers will pay for food and drink, the operating costs of a food business are extraordinary, and the margins are razor thin.
This means that most people working in the restaurant industry have at best a casual relationship with health insurance. If you’re being paid on the books (which not everyone is — under-the-table wages are a tool some restaurant owners don’t reserve for only their undocumented workers) and you’re a single earner (not looking to insure a spouse or dependents) you’d be just above the qualifying income for Medicaid, but likely not bringing home enough to purchase private coverage. Obamacare helped a little. It hasn't fixed it, but it was a step in the right direction, and for the tenuously balanced restaurant industry, a Republican Congress and President taking it away is going to be devastating.
And they are taking it away: At 1:30 this morning, in a 51-48 vote, over urgent and often heartbreaking opposition, the Senate laid the groundwork for a repeal of the Affordable Care Act. With the full support of the Trump administration, the Republican majority is prioritizing a repeal of the ACA, and they have until January 27 to come up with a replacement for it. No one, including these legislators hellbent on making it happen, knows yet what the replacement will be. Maybe it’ll be basically the same thing, but they'll call it TrumpCare. Maybe there will be no guaranteed coverage at all. The uncertainty is sickening, a new illness to deal with, one that disproportionally affects those who can least afford — or withstand — another hit.
Last fall was big for me. I made the decision to move my family, and my business, to Baltimore so that my kids would have a better life. I closed a deal to franchise the bakery worldwide. Our move away from Brooklyn and our business growth got plenty of media coverage, from our local paper to websites with millions of readers. But my biggest victory wasn’t a public story. For nearly a year, I had been dealing privately with a slew of symptoms that could have related to any number of serious conditions, cancer among them.
Before the Affordable Care Act was enacted in 2009, I spent a few years unable to see my doctors. Cancer is a hell of a preexisting condition — insurers aren’t particularly keen on bringing on new customers who are already cancer patients, and those who were willing to offer me coverage offset the inconvenience of my cancer with premiums of a few thousand a month, deductibles in the tens of thousands. Thanks to Obamacare, which meant my preexisting conditions were no longer allowed to be held against me, I was able to afford coverage that got me tests, scans, biopsies — the whole fun-time package I had missed so much. There were plenty of things to be scared of, but that fear of being left out in the cold to die so insurers could please their investors was finally gone.
When I could finally afford to go back to the doctor, I learned that I have a very treatable, non-fatal condition that is tangentially related to the chemotherapy I’d had in my twenties. My oncologist also told me, for the first time, that he calls me his miracle girl, because while he’d kept a stiff upper lip during my initial treatment, he’d been privately certain I wasn’t going to make it. Sitting in the room where 14 years ago he was drilling into my hipbone without anesthesia for marrow samples, we were now talking about how he was finally comfortable in saying he believed I was no longer “in remission.” I had beat it, and it wasn’t coming back.
It was nice to breathe easy, even if it turned out to only be for a short while.
Twenty million people are currently insured through Obamacare. Twenty million people looks like all the people of Wisconsin, Indiana, Montana, Alaska, Nebraska, Kansas, and North Dakota combined. Over the next decade, the number of people who would be unable to afford insurance without Obamacare would be about 27 million — add Kentucky, West Virginia, and Vermont to that nation of uninsured.
Only 14 percent of restaurant employees receive benefits from their employers. You either need to marry someone with benefits, or go without. This is a very physical industry that causes a lot more damage than just cuts and burns — bad backs, bone spurs, pinched nerves, slipped discs. And then there are worst-case scenarios, which always happen to somebody else, until you remember that to everyone you know, that somebody else is you.
I don’t know many restaurant owners who wouldn’t choose to offer health benefits if they could afford to. It’s a smart business decision: In an industry like hospitality, where staff turnover is notoriously high, health benefits can motivate your best employees to stick around, and when people are healthy, they can come to work and do their jobs better. But it’s also the right thing to do. Working in this industry takes over your life. The people you work with often become the only friends you see — sometimes, they are closer than family.
Obamacare was never a one size fits all solution, for workers or for employers. I have friends who were thrilled to finally be able to offer benefits to their staff; others who still found it unaffordable, but were happy their employees had access to the exchange and subsidies. I know people who had to drop their employee plan because of rate hikes, but knew the exchange provided their staff a safety net.
That’s what it comes down to with all of us in the food industry. You can tell us to turn our back on this business and find better jobs with more stable hours and benefits, and many people in hospitality are doing exactly that — and have been, for a while. Chefs, owners, and operators have been terrified for years about it, because not only is the labor pool stagnant, much of it is made up of young cooks with stars in their eyes, emotionally unwilling and financially unable to put in the years of work required to truly master their craft. Too many kitchens, not enough cooks.
But plenty of people stay. Working on the line past the age of 30 isn’t something a lot of young cooks think about. Being broke and working like a madman is tolerable in your twenties, even glamorous, especially if you’re doing something you love. But time doesn’t stop moving. Eventually it takes you a little longer to get out of bed in the morning (or the afternoon), and you grimace through the aches and pains of a job that has you on your feet nonstop. You start a family, or you choose not to start one, or you start one and neglect it and pay for it in one way or another. You see your friends buying houses and new cars and realize that even if you move up the ladder and snag a sous chef position, $38,000 a year won’t get you far. You start to see the appeal of steady benefits, so you can do things like see a chiropractor or an orthopedist, to start to care for a body whose lithe, resilient days are behind it. You know you won’t be able to do this when you’re in your sixties, but how can you afford to retire? Who takes care of you when your restaurant closes, or your body has had enough? What happens to you if — when — you get sick?
My husband is my business partner, and he is also marked. In his pre-restaurant-industry life, he was a FDNY paramedic, one of the first responders at Ground Zero on 9/11. He was seriously hurt that day, and now screws hold his knees together. He’s had serious GI problems, insomnia, panic attacks from his PTSD — but for the most part, he’s been okay. His lung scans regularly come back clean, his night terrors are less frequent, but the things he saw cannot be erased. We don’t look backwards more than we have to.
Last February, he had some tightness in his chest which we thought was stress, but he went to the ER anyway, just to be safe. Six hours later, we were in the cardiac ICU for tests, which revealed a minor inflammation in the membrane around his heart. Over the weeks that followed, that minor inflammation developed into an infection that attacked his gallbladder, liver, heart, and lungs. We became far too familiar with that hospital.
Six months earlier we had been on top of the world, about to go on the adventure of a lifetime, and make a ton of money doing it. But you don’t think about any of that when you’re lying alone in a king-sized bed you usually share, wondering when he’s going to come home, and how long he’ll be able to stay before the next thing breaks. Did he finally kick the infection, or if it will come back? Where did it come from in the first place? What else don’t we know? What about our plans? What happens next Wondering, over and over and over again, Would you ever be able to live without him?
Because that will happen one day. Tomorrow, or twenty years from now, but it will happen. None of us get a choice about that. The plans no longer matter. The only thing that does is keeping him here with me and our two kids. The bills for his treatment were over $100,000. My husband would have died without it. We could never have afforded it without Obamacare. Obamacare saved my husband's life.
It’s one thing for me to cite facts and figures, to sit at a desk and run numbers, or spend hours on the phone with insurance companies trying to find clarity. It’s another thing entirely to stare into the face of the man you love, to watch your children stare at their ailing father, and understand in your bones — in your heart, in your soul — what’s actually at stake when a person gets sick.
The problem here isn’t which position the government has or what laws are being repealed: It’s the fact that we have no stability when it comes to making important decisions about our health care, nor can any of us be certain what’s in store. We’ll likely have a different political agenda on the table in four years, and then again four years after that.
Obamacare was never perfect, but it was a step in the right direction. It gave us all a chance — not just those of us in the restaurant industry who saw it as literal lifeline, but everyone. Every single person whose lives our lives touch. The ones who have us cater their office lunches, bake their kid’s birthday cakes, cook fancy dinners to impress clients, fold their burritos, take their coffee orders, deliver their pizzas, flip their flapjacks, roll their sushi, clear their dishes, retrieve their coats, hold their dressing, recite their specials, remember their preferences, make them feel special and welcomed and loved, and, on occasion, sing them Happy Birthday.
I’m 36 years old. I have two sons who need me. I’m okay right now, but don’t know if I’ll get sideswiped by some long term effect the chemo had on me. Next year I could have another round of surprise biopsies and panic attacks, or it could be smooth sailing until I'm 90. I can pray that I’ll go peacefully in my sleep, and never once need to see a doctor between now and 60 years from now. I’m already praying that my husband continues to recover well, that the universe complies with his doctor’s “absolutely no stress whatsoever” order. God’s always been good at giving people exactly what they pray for, right?
Maybe I’ll stay in this industry until the day I die. Maybe I’ll continue with the plans we had a year ago, when things seemed clear and our next steps seemed logical. Maybe I walk away from it all and look for a stable job with benefits, one where I will never worry about being replaced by technology. Maybe I’ll find a way to move on from the fear I feel when I remember that at any moment, a person’s body can betray her mind. That our bodies have the power to take away everything in our world, and we don’t have the security of knowing that we’ll always be able to fight back.
Allison Robicelli is a chef, author, entrepreneur, wife and mother, bon vivant, and all-around a good time at parties.
Vance Lump is a freelance illustrator based in the Pacific Northwest.
Editors: Hillary Dixler and Helen Rosner