| The political gets personal -- A Rant |
[Mar. 22nd, 2005|11:04 am] |
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.” |
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