The political gets personal -- A Rant

The personal is political.

I have been going through a major family crisis for the past six months—the world-shaking kind that I would think could knock you away from any sort of grasp of the outside world, so it becomes all about “you,” all about “family,” all about the personal, and not “the political.”

But each and every day, I am reminded in the most sickening of ways of how the decisions being made by our current administration and the policies mandated by our government impact me. As I watch their political machinations unfold, I am not finding compassion amongst our leaders; I’m finding cruelty.

In September, my husband was diagnosed with liver cancer. He’d been feeling sick for some time, but as a graduate student, my health insurance coverage only covers the academic year. We waited through a terrible August and September, thinking certainly one of those “little purple pills” they advertise on TV would miraculously fix him. Wrong. My health insurance went into effect September 15, and on September 16 our family physician was looking my husband in the eye and telling him it looked like cancer. He had a CT-scan the following day, revealing a “large mass” in his abdomen. He was hospitalized that afternoon, and our doctor recommended a surgeon who could hopefully operate right away. But the surgeon was reluctant, and although a biopsy confirmed our worst fears—cancer—she didn’t want to touch him. She referred us to a liver transplant specialist at Oregon Health Sciences University.

Liver transplant. This was when I first realized we’d need financial help. Our insurance has an annual limit of $100,000, and it doesn’t cover transplants. A new liver costs about half a mil, not an amount a grad student and an artist are likely to have lying around.

Indeed, here we are, a grad student and an artist, both 33. We have chosen life paths that have not rewarded us with financial riches (yet), but I think we’ve been comfortable with our self-imposed poverty. We don’t own our own home, but we’ve always managed to make ends meet. We’ve been together for almost 14 years and have an 11-year-old son. We’ve done lots of things “wrong,” I suppose. I rejected my parents' religion. I criticize capitalism. I was at the WTO protests in Seattle. I dropped out of college, got pregnant, got married, finished college, went to grad school—not exactly the roadmap good girls are meant to follow. But we’ve done lots of things “right,” too. My husband has taught art to homeless and incarcerated youth; I’ve tried to be an activist for literacy and for social and environmental justice—in the classroom and on the streets; we’re raising a good kid; our dogs “sit” and “stay.” We haven’t been on welfare, and we have good credit.

But a liver transplant can’t be purchased with student loan funds or placed on a credit card to be paid off at a 23% interest rate. So I called the Department of Human Services, believing that the Oregon Health Plan guaranteed health care to all low-income Oregonians. I thought they could help. “I’m sorry,” the woman told me on the phone. “There is no funding for new clients on the Oregon Health Plan.” “But, but,” I stammered, “what about Medicaid?!” “I’m sorry, honey. You’re breaking my heart. But there’s nothing I can do for you. There’s no Medicaid unless your husband is disabled.”

Political insight #1: The United States has billions of dollars to fight a war in Iraq but cannot provide medical coverage for its most needy citizens. There is no “safety net,” folks. It’s gone.

To our relief, the liver specialist at OHSU determined that my husband’s tumor was in fact far too large for a liver transplant. Yes, I said, “to our relief.” Crazy. He had surgery November 3, the day after George W. Bush was re-elected. After ten hours in the operating room, the surgeon informed me that she had successfully removed the tumor—almost six pounds of tumor—along with half his liver and his gallbladder. Unfortunately, the cancer had spread.

I brought him home from the hospital only five days later, so determined was he to make a speedy and full recovery. But between the weight loss from the cancer (he’d lost almost 40 pounds before he finally had surgery) and the trauma of the surgery itself, he was very weak. So I applied for Social Security Disability. Fortunately, like good honest Americans, we had paid self-employment taxes on his art and teaching income, and he qualified for benefits: $590 a month. Although our combined income—my salary as a GTF and his disability check—does not cover all our monthly bills, the Social Security Administration determined that we make too much money to quality for SSI. The maximum income to get SSI: $570 a month. You like that math? That $20 difference? And without SSI, there is no Medicaid coverage (until you’ve been on Social Security for two years), and without Medicaid coverage, there is no assistance with any medical expenses we accrue in his follow-up care.

Cost to date for surgery, CT-scans, hospital stays, doctors’ visits, and labwork: $79,000. Insurance benefit left for year: $21,000. Days left until new benefit year: 145. Response from Social Security Administration when I went down to their office with our 2004 tax returns to prove our lack of income: Priceless.

“There’s nothing I can do for you. Come back in two years.”

Prognosis of someone with stage four liver cancer: 3 months

So the federal and stage government have elected to turn their backs on us. That’s fine, I suppose, as the poverty and suffering we experience in this household seem trivial compared to the devastation I see going on in other parts of the world. Tsunamis. Wars. Bird Flu. At least we have a roof over our heads; we can walk down the street without fear of suicide bombers; we have access to terrific (albeit expensive) medical services; heck, we even have DSL. So the government can leave us alone in this period of struggle. Right?

Political insight #2: War is peace. Freedom is slavery. Big Brother is watching you. They promise a smaller government, which they enact by cutting services to the needy; but when it comes to privacy and autonomy, they are quick to intervene, particularly if an individual’s decision runs counter to the administration’s fundamentalist beliefs. It’s not just hypocrisy; it’s Orwellian.

Case 1: Medical Marijuana. You betcha. My husband’s got an official card from the state of Oregon that allows him to possess the herb and consume it for medical purposes. It helps with the nausea, mostly, and a bit with the pain. He’s managed to put back on almost all the weight he lost (+35 lbs), thanks to the marijuana—and the cheesecake. But the administration is gripped by “reefer madness” (or some crazed lust for unlimited federal power—you decide) and seeks to reverse the wishes of voters in eleven states, banning medical marijuana programs and outlawing possession of marijuana, even for personal, medical use.

Case 2: “Death with Dignity”—the Oregon law that allows for doctor-assisted suicide for patients with less than six months to live. Ashcroft et al have challenged this law that Oregon voters have twice approved. It is currently under review by the Supreme Court. And quite frankly, it’s this whole Terri Schiavo mess that has me writing this. My husband and I both have advance health care directives—do not resuscitate, thank you very much. But, like Michael Schiavo, I have in-laws who are completely out-of-touch with my husband’s wishes. I am mortified with the thought that this woman is not being allowed to die and that the federal government feels compelled to intervene in this family’s world. (And I am frightened with the thought of the struggles that lie ahead for me with my husband’s family.) Our story’s different than the Schiavos, of course. I am living every day of my life right now with a loved one consciously in pain.

We have no idea what the future holds—medically or financially.

None of us do, I suppose.

But it’s nice to know that in someone’s final days, Uncle Sam will be there, not to pay any medical bills or keep the pantry stocked, but to reinsert the feeding tube and snatch away the bong.

Welcome to the neo-con “culture of life.”