A few months before her second birthday, my oldest daughter was diagnosed with leukemia. One minute, a Saturday afternoon in March, she was climbing on the chairs in a hospital waiting room, and the next minute she was being rushed into an exam room, quarantined for her own safety--her immune system shot, her platelets dangerously low, the situation so grave that if she'd bumped her head, she could have suffered intracranial bleeding. My husband and I were in our twenties, married three years. Kate had enjoyed a glowingly healthy infancy, and when the bruises blossomed all over her arms and legs, leading to a nightmarish day of testing and waiting and somber-faced doctors using words like "pluripotent stem cells" and "complete blood exchange," we could hardly believe it was real. Cancer.
It could have been worse. Scott had a good job at DC Comics in New York City, a job with a modest salary but (as a subsidiary of Time Warner) excellent medical benefits. It can cost tens or even hundreds of thousands of dollars to wipe cancer out of a toddler's bloodstream. During the next nine months, Kate's (and therefore my) longest consecutive stay at home was ten days. The leukemia was quite advanced at diagnosis; she was deemed 'high risk' and put on a high-dose chemotherapy protocol, the kind that, if it doesn't kill you, gives you a good fighting chance of permanent remission. There were times it seemed it really might kill her. Her Broviac catheter went septic and had to be replaced in a rush surgery. Once, a bacterial infection ate away at a sore on her back. Before the doctors finally figured out what it was, they told us they thought it was a fungal infection and there might be similar lesions all over her internal organs. That was a bad day. Again: we got lucky. The bacteria was vanquished by I.V. antibiotics. She still has a crater-shaped scar there--"the divot," we call it.
Can you imagine it?--Scott, in his Manhattan office, editing comic books while his heart was in a hospital at the far edge of Queens. He'd take the subway home to our apartment in Queens, then drive out to the hospital to see us, bringing dinner, fresh laundry, sitting with Kate while I dashed to the Ronald McDonald House for a shower. Then he'd make the long, lonely drive back, late at night, up early for the next morning's subway commute to work. After he left, I'd sit by Kate's hospital bed, her I.V. beeping, and work. I wrote my first historical novel in that series of hospital rooms. My publishers loaned me a laptop.
(A writer friend of mine, herself a cancer survivor, once pointed out that I talk an awful lot about hair in that novel--my main character, a young girl, is always running around with her hair streaming in the wind--all those scenes written during the months when my little girl was bald. I didn't realize.)
Kate survived. Her hair grew back. She's seventeen now and a marvel. We feel lucky every day, just looking at her. After the worst of her chemo was over and she'd moved to the low-dose, outpatient, maintenance phase, Scott left his job at DC Comics to stay home and write fulltime. By then both of us were doing well as freelancers, writing children's books and comics. We had just had our second baby, another little girl, and after all those days Scott had spent apart from us, he wanted to be with his family as much as possible. Cancer does that to you. Kate's divot isn't the only scar. But that one's a good scar--a deep gratitude, a joy in being with your family, an awareness that every day you spend together is a gift.
Of course, leaving the job meant our healthcare costs went way up. We were on COBRA for a few months, but it was crushingly expensive. We shifted to an individual, direct-pay plan: also very expensive, especially factoring in the higher copays, lab fees, and prescription prices. In late 2001, when Kate was cleared to travel, we moved to Virginia where the cost of living was considerably lower. But the interstate move resulted in Kate being dropped from our family medical plan; we had to take out a separate policy for her: an extra $600 a month. Being self-employed is expensive. No employer to kick in for healthcare, dental, vision, or even to pay part of your FICA.
That was part of what staggered me about your 47% remarks, Mr. Romney--how unaware you seemed of the reality of the self-employed, the low-income earners, the struggling middle class--and how contemptuous. That and the complete lack of logic. You took two separate circles in a Venn diagram--in one circle, people likely to vote for President Obama; in another circle, people who because of low income and the Bush-era child tax credits, do not owe federal income taxes--and conflated them as if they consist of identical sets of people. Surely you realize that they're different circles, only partly overlapping. In the "didn't owe income taxes" circle, the 47% of the American public you characterized as people you'll never "convince they should take personal responsibility and care for their lives," are retirees, students, disabled people, and low-income earners. Hardworking, honorable people--a lot of whom happen to be Republican, by the way. Most adults occupy that circle at some point in their lives--during college, for example, or after retirement. And of course, the "Obama voters" circle contains large numbers of people who do pay federal income taxes--in fact, many of those folks pay a higher percentage of their income than you do, yourself. The careless way you conflated those circles was astonishing.
(Not to mention the way you turned "people don't OWE federal income tax" into "people don't PAY federal income tax." As you yourself have stated, "I don't pay more [in taxes] than are legally due and frankly if I had paid more than are legally due I don't think I'd be qualified to become president. I'd think people would want me to follow the law and pay only what the tax code requires." Should that 47% you deplore pay more than they legally owe?)
In 2003, our fourth child was born, our first son. Barely an hour after his birth, he was rushed away from me to a different hospital for emergency NICU treatment--born with a coil of intestine in his umbilical cord. No one was expecting it; I'd had a perfectly normal pregnancy. I left the maternity hospital six hours after delivery to be with him in the NICU. He had his first surgery at two days old; others followed. Every day that first week, something new was diagnosed--with more diagnoses to follow in the next few years. He is hard of hearing, cognitively disabled, developmentally delayed. He began receiving physical and occupational therapy at four months of age; for a while the doctors told us it was possible he would never walk. Scott and I worked with him for hours a day--especially Scott, working Stevie's hands, his arms, his legs; doing the massage and stretching exercises the therapists taught us. Steven runs around now with a somewhat awkward gait--but he runs. He's been in hearing aids since before his first birthday. We've spent more hours than I can count in speech therapy, PT, OT, hospital labs, specialists' exam rooms.
Gov. Romney, you've vowed that if you are elected President, you'll repeal the Affordable Healthcare Act. In the first debate, you said "preexisting conditions are covered under my plan." But that's not entirely true. What you're referring to is a law that already exists--HIPAA, which says that if you lose your coverage you can continue to purchase it, as long as there's no break in coverage longer than 63 days. It might be expensive, but you can't be denied for preexisting conditions. But what if you didn't have any coverage to begin with? Or what if you can't afford the expensive premiums?
Look, I get it. Preexisting conditions mean risk. Insurance companies are in business to make money. Without provisions to ensure coverage for people with preexisting conditions, people like Kate and Steven are going to find it difficult to buy health insurance as adults, plain and simple. There was a heartbreaking number of children on that cancer ward at Schneider Children's Hospital in 1997. Some of them died--children we knew, children we lived with for months, children we loved. Most of the patients we knew, thanks to excellent and timely medical treatment, survived both the disease and the toxic drugs that destroy it. All of those kids, those survivors who fought so hard and endured so much pain, now have "preexisting conditions." Some of them are adults now. Because of the Affordable Care Act, they can stay on their parents' insurance through age 26. After they age out, if they can't find jobs that provide medical benefits, will you dismiss them as people you "don't have to worry about," shirkers who don't "take personal responsibility and care for their lives"?
Or what about those who want to become, say, a writer or an artist or an inventor or who have the kind of entrepreneurial spirit that leads someone to take a chance and start a new business---all life plans that don't come with employer-provided health insurance. Are they irresponsible too?
Melissa Wiley is the author of more than a dozen books for kids and teens, including The Prairie Thief, Inch and Roly Make a Wish, Fox and Crow Are Not Friends, and two series of novels about the ancestors of Laura Ingalls Wilder. She lives in San Diego with her husband, Scott Peterson, and their six children, whose antics are the inspiration for their webcomic, Into the Thicklebit, illustrated by Chris Gugliotti. Melissa is a contributing writer at Wired.com's GeekMom and blogs about her family's love affair with books at Here in the Bonny Glen.