What Color Are the Holes in Your Parachute? (originally posted at Feministe 10/23/07)

Back in my second introduction on this site, I mentioned that my daughter was born premature at 25 weeks gestation, 735 grams (one pound, ten ounces). As you might imagine, she was extremely medically fragile, and had many complications. She had four surgeries, and stayed in two different hospitals for the first six months of her life (her fifth surgery occurred after she was already home). I am typing on a borrowed laptop for the time being, but if I had access to a scanner I would post the picture that was handed to me as I was being wheeled out of surgery, about a minute after I regained consciousness from general anaesthesia. That Polaroid (taken by the nurses) is probably far more dramatic than I can describe in words, but I will try.

My first thought, other than “yay! she’s alive” (something I knew before they told me—I could tell the way the people around my stretcher were talking to one another, before they addressed me and could tell I was conscious enough to understand conversation), my very first thought upon seeing that photo was how raw she looked. It wasn’t even her physical size that had the most impact—it was her rawness. I had never seen a preemie before, let alone a “micropreemie”. Her skin was translucent—no pigmentation yet. She did not have a fat layer. She was all raw bone and muscle. It was like looking at someone who had been skinned alive. Her legs were darkened, due to the limited blood supply they received from her being footling breech. One leg was the color of liver, the other was even darker. And then came “the speech.”

A good neonatologist has “the speech” down the way a good funk band has the groove—smooth, detailed, all the right notes, the right timbre, the right punches in the rhythm. And my girl, because of the critical condition she was likely to be in, got the best, most experienced neonatologist in the joint. He is a small man, with the smallest hands I’ve ever seen on an adult. Serious demeanor. Thick Indian accent. And he had that speech down like James Brown. He started, “You have a very, very sick baby….” He went on, rapid-fire, in what was to him a familiar litany; he gave her a fifty-fifty chance of survival, and described the complications she had (respiratory distress syndrome, bronchopulmonary dysplasia, patent ductus arteriosis, hyperbilirubinemia), what complications she was likely to have that hadn’t yet been confirmed (intraventricular hemmorrhage, and what grade I-IV), and what complications she could develop during her stay (necrotizing enterocolitis, retinopathy of prematurity, periventricular leukomalacia). He described the current course of treatment, including the names of the medicines being administered. He even described what is known in the NICU as the “honeymoon period”, where the preemie does ok at first, and then crashes hard. He didn’t use the word “crashes”; that was a term I heard later from NICU nurses. He encouraged me to see her often, and told me that despite the sensitivity that preemies have to sound and touch, that she would be soothed by my presence and voice. He left, and the lactation nurse handed me some plastic cones to hold over my breasts while she gave me instructions on how to operate the breast pump.

A couple of weeks later, the honeymoon period ended. Her bowel was perforated, she went into sepsis, acquired the aforementioned NEC and a particularly gruesome complication—Disseminated Intravascular Coagulation, or DIC for short. Known as “Death Is Coming” to experienced medical personnel. I did not know how bad DIC was at the time; when I tell her NICU story to medical people, and tell them she had it, their jaws tend to drop and their eyes bug out. Surviving DIC isn’t the norm. I held her little hand and quietly sang songs to her, mostly Etta James and Koko Taylor, but some vintage Elton John, Rolling Stones, even some Mary J. Blige. Just, whatever I could think of at the time. I told her what sunsets looked like, ‘cuz her pod was facing west, but the windows were too high for her to see. I told her, just in case she was wondering why the light changed during the day as it moved into night. I tried to describe the taste of salsiccia and stuffed shells to her, piping hot rigatoni with rich, spicy sugu and fresh grated parmesan on top. What the wind felt like on the face and in the hair. All the places we would go and see when she got healthy and got outta there. I wanted to give her something to fight for. And just like on that first day, her respiratory and heart rate, and her oxygen saturation rate would improve as I spoke. It was a battle, and at one point a nurse told me point blank that if I was thinking about getting her baptized, perhaps I’d like to call a priest.

And during that time, I thought I was on Family and Medical Leave. After all, I called my employer from the hospital (when I was admitted on bed rest) and asked for it, citing my condition. I called the union hall and asked what paperwork I needed to complete—and found out no one knew. No one had ever asked before. I went home to eat and take a shower before going back to the hospital, and found the pink slip in the mail. Just a pink slip. In an envelope. By itself. No explanation. “Reduction in force” is what it read. And I was madder than a motherfucker. I went out to the hall and was told that it was just a regular layoff, and that I had no recourse, because it says right in the contract that the employer gets to decide who stays and who goes, and what was I mad about anyway, ‘cuz it was just a “reduction in force”, not a firing. At least I’d be able to collect unemployment. I had already done my own research, and had contacted my (union) district’s human rights department, explaining that I was breaking barriers by being the first pregnant electrician, likely to encounter a lot of resistance. Seeing a distinct lack of interest at the hall, I took matters into the capable hands of the Department of Labor. See, I wasn’t concerned about unemployment. What I needed, was health insurance.

Now, here is where I probably ought to explain how health insurance works for most of the building trades. ERISA plans for the building trades have some unique conditions because of the nature of our work, and thus warrant our own mention in the text of FMLA. See, we have something called “bank hours”. Our insurance, or lack thereof, is determined by the number of hours per month that we work. It varies from plan to plan, depending on the general financial health of the particular Health & Welfare Fund; on my particular plan (at that time), a person had to work 160 hours per month to have health insurance, with anything over that amount going into an “hours bank”. The “hours bank” has a maximum of six months’ worth of hours, and its purpose is to be there as a reserve during times of intermittent unemployment. (During the boom-time nineties, when work was plentiful in my area, a person only had to work for 140 hours a month to secure insurance, with the rest going into the hours bank.) With the minimum hours at 160, it was difficult to bank hours to have enough to reserve for the lean times. Also, my plan is “all or nothing”—either everyone in the family has it, or no one. COBRA is a one-size-fits-all. When it comes to bank hours, the FMLA is very clear—the employer is to continue health plan contributions as if the worker was still at work; the worker’s bank hours are not to be used.

And therein lies the rub. I needed that insurance. I knew from my daughter’s condition that she was likely to remain in the hospital past my bank hours. I needed the full twelve weeks of hours that FMLA grants by law. And since I fully qualified for FMLA, and considered it an act of discrimination to be laid off, off I went to the DoL. And it got really ugly. Really, really ugly. But it was quick, just like I needed it to be. And I won my claim—the brokered deal was, I could either have my job back, or I could have the twelve weeks of FMLA. I took the twelve weeks. It had already been that long; and I took the call from my DoL caseworker while I was in the Ronald McDonald House in St. Louis (the CWE—in case you’re familiar with STL).

Yes, she had been sent to St. Louis for her iliostomy takedown (although I didn’t know it at the time, the surgeon who had performed her iliostomy had lost hospital privileges and was under investigation for causing the death of an infant and the near-death of a couple of others—his license was suspended for a time and he was required to obtain substance-abuse treatment. I was told the “edited version”; that the reason for her transfer was that her reattachment surgery was likely to be tricky and needed the experienced hands of a pediatric surgeon, one experienced with premature infants—not a general surgeon. That was also true. How did I discover the background information? From the front page news of the newspaper, months after she was released from the hospital).

Prior to that, I received my first bill from her original hospital. It came after six weeks of treatment—before my daughter was officially listed as being under the insurance plan (see, you have to produce a birth certificate first, and there’s a time lag between when you can obtain the official birth certificate from the state, and the processing of the paperwork with the insurance plan. First, I had to prove that the baby that came out of my body via the fully-paid for emergency c-section, was actually mine. Don’tcha just love bureaucracy? It didn’t include neonatology services, radiology services, pediatric cardiology, respiratory therapists, or even surgery. But it was about $750,000 just the same. Now remember, that was before the hefty insurance discount was applied.

And I laughed. Yes, I laughed. What the hell else could I do? Who the hell did they think was going to be pulling $750,000 out of her ass? Because it sure wasn’t me. At the Ronald McDonald House, I traded war stories with the other parents. Most of the parents there were long-termers—waiting for the call for new organs for their sick children. Everyone had lost their jobs because of their children’s medical crises. At least once. I met folks whose employers couldn’t be bothered to give them a week of time off. I met a family where both parents had hepatitis C (and that ain’t cheap, people); they were waiting for their toddler son to get a lung transplant. People from all over the nation. A nation of isolated medical crises.

“Usual and customary charges.” That’s another pothole in the road. See, oftentimes you will have no idea if your healthcare provider charges above the “usual and customary” if the healthcare provider is not in the PPO plan—which, in an emergency, they may not be. My daughter’s neonatology group was not listed in the PPO plan, even though they were the only providers at the time at the only Level III NICU between Chicago and St. Louis. And they charged what my plan felt was double the “usual and customary”. The term is supposed to refer to charges listed in the industry-standard “Blue Book” or some such hocus-pocus shit. The feet-on-the-ground reality was that (a) my daughter needed a neonatologist, (b) that was my only local choice and (c) she was too medically fragile to transfer to St. Louis prior to her about her fifth month of life (and not that they had any beds, anyway. That’s a real busy place).

“Maximum lifetime benefit” is my favorite, though. My plan had a “maximum lifetime benefit” of one million dollars. Believe it or not, when my girl was released from the hospital, after all the insurance discounts had been applied (not to neonatology, of course—the outliers not in the PPO), she had not yet exceeded the max. Close, but no cigar.

So as you can imagine, I’ve got a certain take on S-CHIP, and the treatment the Frosts have received from the “compassionate conservative” set. Let’s recap, shall we? Here’s the sitch:

• for almost all of us, insurance comes through employment


• for almost all of us, COBRA payments are more than we can manage on umemployment benefits


• even if we have insurance, it comes with a “usual and customary charges” clause


• even if we have insurance, it comes with a maximum lifetime benefit


• and if we are unfortunate enough to have a medical condition, it can be literally impossible, at any price, to obtain private health insurance

Ok? That is our insurance backdrop. For our international readers, this is health insurance in the United States. Fun, isn’t it? Perhaps I ought to explain the concept of the insurance discount. See, if you have health insurance, your provider negotiates with various local healthcare providers to negotiate them down to accept the lowest possible payment, in exchange for steering customers towards them (i.e., folks in need of medical care—in the United States, they are called “customers” because healthcare isn’t seen as a “need” like food, water and shelter. It is seen as a “want,” like a new car or plasma-screen television. A consumer good). Some plans have PPOs, some HMOs, but it’s roughly the same principle. Negotiate the lowest rates, and steer the sick folks into a particular set of doors. Both for-profit and self-funded nonprofit plans (like my ERISA fund) work that way.

So, if you have insurance, you will pay less for healthcare than a person without insurance. If you have Medicaid, the providers cannot forward higher charges on to the individual—they have to take what Medicaid pays. However—healthcare providers don’t have to accept Medicaid. If you are poor enough to qualify for Medicaid (which is damn poor—I didn’t qualify while I was on unemployment benefits), you can still be left without a provider (other than the emergency room). Healthcare providers won’t accept people without insurance unless they pay up front—which is beyond the means of almost everyone. Now you know why the emergency room is the preferred provider for the United States.

******

Although I had insurance, my daughter received what the “compassionate conservative” set tells us (hisses at us) is “welfare”. Her forms of welfare? WIC (Women’s, Infants and Children, a supplementary food program) while I was on unemployment, as my daughter was on nightly feedings of Pediasure through a g-tube. My insurance (remember those bank hours!) paid for the pump and the bags, but not the Pediasure, as that is considered “food”, and not medically reimbursible (despite being medically necessary due to her medical diagnosis of Failure to Thrive, which stemmed from her partial bowel removal and malabsorption from the necrotizing enterocolitis). WIC paid for the Pediasure (which cost over $200 a month) as it was prescribed by her gastroenterologist, and things like cereal and juice.

She was also the beneficiary of a federally-mandated (yet state-funded) program—Early Intervention. Early Intervention provided her with speech therapy, occupational therapy, physical therapy, and developmental therapy. The purpose of the program is to provide these interventions during the critical first three years of life, in order to provide children with special needs with the best possible outcomes. “Best possible outcomes” are more likely the earlier in life therapy begins. Because of Early Intervention, you would not know my girl was a preemie if you saw her on the playground—she is slightly taller than average, runs and plays with the same vigor and ability as other kids her age, and speaks clearly (a real concern of mine in those days of speech therapy, as her palate is high and ridged from being ventilated the first two months of her life). This took years, people. She had to be taught how to eat. She had sensory integration issues. She had poor muscle tone and couldn’t hold her head up at seven months of age. Early Intervention enables children like my daughter to reach the same developmental goals as children without those challenges by the time school starts—and barring that, to at least be likely to be “mainstreamed” into the general school population.

And finally, Early Start, which is basically Head Start without the income requirements. Early Start is for children at high risk for educational delays. Because of her late birthday, she attended two years of Early Start prior to kindergarten.

Yep, those are forms of welfare. And I am so glad those programs were there. They made a tremendous, lifelong, permanent difference in the life of my child. I could not, and she could not, have done anywhere near as well without benefitting from those programs. And there are millions of families like mine, benefitting from public programs. And their lives are being saved. Their. lives. are being. saved.

*****

In 2005, I was unemployed for so long, I ran out of both unemployment benefits and health insurance. Luckily, nothing happened.

*****

There are many myths in These United States (why do I keep wanting to type “Untied” States?). The myth of Individuality reigns above all. The idea that one stands, or falls, all on his or her own. It is at the root of the notorious historical amnesia this country suffers from. It informs racist and sexist beliefs. It distorts the ability of various progressive groups to organize around issues central to the fabric of our lives, let alone form coalitions with other progressive groups to aim towards and achieve justice for All. It is the poison in our well. This ridiculuous notion that we can manage without the assistance of others. (and can I just mention that in the middle of the word “ridiculuous” there is a “culu,” or ass? So that while I can’t prove it, the true etymology of “ridiculuous” probably refers to laughing one’s ass off?)

We stand on the shoulders of those who went before us. We stand with the help of those who stand with us, whether we are aware of it, or whether we choose to admit it. In the United States, we are taught that we stand “on our own two feet,” as if we weren’t taught how to stand, how to walk. We are supposed to “pull our own bootstraps” regardless of whether we have shoes, or broken laces. Even those of us who are not taught those lessons in our family of origin are affected by them, as the Cult of Individuality permeates the atmosphere outside the front door: in the schools, in the workplace, and especially in the political arena, where the values of Calvinism are given a fuel injection of Ayn Rand. We are told that those who stumble are careless. That they should have planned better. Should have had more savings. Should have foreseen the deluge. Didn’t they know that it was inevitable? That they aren’t among the saved?

That is what is behind the opposition to S-CHIP. That those currently without a safety net, save that of their own wages and savings, should necessarily suffer. Should declare bankruptcy. It is their destiny. After all, if they were Worthy People, they would be able to come up with the money on their own. They would be able to find a sponsor. Hence, the number of benefit parties, barbecues, chili cook-offs, mostaccioli dinners, and poker runs held at taverns, union halls, churches (temples, masjids), and social clubs throughout the midwest and elsewhere; a desparate attempt to come up with some kind of money, and prove some kind of personal worth in the face of cancer, accidents, heart attacks, strokes, premature birth, job loss and any number of cascading personal crises that don’t tend to arrive alone. Half of all bankruptcies in the United States are due to medical bills.

What color are the holes in your parachute? The ones that you’ll see when, in a moment of need, you look up?