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

Comments:
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From: (Anonymous)
2005-03-22 07:31 pm (UTC)

The New American Century

I'm so sorry. And of course you are exactly right. Thanks for putting it all down.

Tech
(Reply) (Thread)
From: (Anonymous)
2005-03-22 07:42 pm (UTC)
I am so sorry to hear your story. So eloquent for someone in some much pain. And right on target too.

Big hugs and best wishes for peace to both you and your husband.

-Spidey
(Reply) (Thread)
From: parkerlindesay
2008-08-11 07:08 pm (UTC)
Sent by Marilyn | PM ET | Dear Leroy, I am sorry to hear that you are having so much pain. I was very optimistic that the pain would be less enduring than chemo effects.
(Reply) (Parent) (Thread)
From: (Anonymous)
2005-03-22 07:48 pm (UTC)

I am so so sorry that you and your family are going through this. Hugs being sent your way.

-Syren
(Reply) (Thread)
From: cristobalsuhr
2008-08-11 09:38 am (UTC)
I am so sorry for you and your beautiful family. May you find what you need to get through this. Comment by POM — July @ pm Thank you for giving me a way to say I love you to a little baby and a momma I’ve never met.
(Reply) (Parent) (Thread)
From: (Anonymous)
2005-03-22 07:50 pm (UTC)
Good governor, what a mess.

You are a strong woman. I am so sorry.

Wheeze
(Reply) (Thread)
From: (Anonymous)
2005-03-22 07:52 pm (UTC)

((((HUGS)))))

Badger dear, I had no idea the struggles you and your family are facing. You are a strong, wonderful individual with many admirable qualities. I wish the best to you, your husband, and your son.

Thank you for sharing your story and pointing out the human side of this argument.

TxMomma
(Reply) (Thread)
From: (Anonymous)
2005-03-22 08:12 pm (UTC)

Badger...

I'm so sorry you are going through this and I wish I could help. *hugs*
Frisky
(Reply) (Thread)
From: exinterper
2005-03-22 09:32 pm (UTC)
I'm so sorry Badger. I can't imagine expressing such painful thoughts so eloquently. I hope you can find some way to make this all worth.

-ExI
(Reply) (Thread)
From: exinterper
2005-03-22 09:33 pm (UTC)
I meant "work" not "worth." Just wanted to make that clear.

*hugs* for you and your husband.
(Reply) (Parent) (Thread)
From: (Anonymous)
2005-03-22 10:04 pm (UTC)
I don't know what to say, I cannot even imagine how difficult your husbands illness has been for all of you.
I am so sorry.
I was to scream at the injustice of you not being able to get the help you need.

I wish I could do something, anything, even just hug you.
I am sending you loving thoughts.
I am so glad you decided to share with us, it was brave of you to bare your heart.

With HUGS
Erica ~ Buggy



(Reply) (Thread)
From: (Anonymous)
2005-03-28 02:26 am (UTC)
I wanted to post my own comment but buggy's says it best for me. You are in my prayers! {hugs} motormouth
(Reply) (Parent) (Thread)
From: (Anonymous)
2005-03-23 03:19 am (UTC)

Dearest Badger

My thoughts are with you. You wrote an eloquent story about your recent problems and dealings with them. I agree with contacting the media. Even Oprah's website has a place where you can write to her with a story that she might use. You never know. May you find strength in your on-line friends.
Puffy
(Reply) (Thread)
From: darrickreilly
2008-08-11 09:12 am (UTC)
As Becky shared her story you could feel her pain as she shared that her son's December birthday was approaching and how hard it was for her.
(Reply) (Parent) (Thread)
From: (Anonymous)
2005-03-23 06:45 am (UTC)

My Sympathies


I am so sorry for all of the struggles you have been going through. I agree with you, especially about the medical marijuana.

{{{BIG HUGS}}} to you and your family. I will be praying for you.

Right now, I am crying about your dilemma. I hope the best for you and your family.
(Reply) (Thread)
[User Picture]From: jenbeauty
2005-03-23 02:24 pm (UTC)
{{{HUGS}}} to you...very sorry for your situation and that my dear was beautifully written!
(Reply) (Thread)
[User Picture]From: flamingtoilet
2005-03-23 02:38 pm (UTC)
Big hugs. I can't imagine what you're going through.

Draco
(Reply) (Thread)
From: (Anonymous)
2005-03-23 07:41 pm (UTC)
Wow. What to say. I hope that somehow you can find a way to make this work.

Perhaps contacting an elected official? One may be willing to take up the banner of this as a counterweight to the Schiavo fiasco?

Good luck with everything.

*hugs*

aethelstan
(Reply) (Thread)
From: (Anonymous)
2005-03-24 02:10 am (UTC)

I'm so sorry.

I can't begin to comprehend what this must be like. I hope you don't mind, but I took the liberty of linking to this post from my blog, asking for ideas. One thought I have (and this may be anathema to you because of your decision to walk away from the church, one which I completely understand) is that folks who know you and care about this situation might go to their churches--or at least the churches local to you that are of the same denomination--and make them aware of what's happening. For all of religion's many, many flaws, one thing it has been known to do well is to support people in their communities when other options seem to be nil. I'd like to think that my church would, regardless of a person's beliefs, come to the aid of someone in our community who needed it. From everything I've seen of my church, I believe they would, and would not enter the situation with "strings attached," but rather because it is what they SHOULD do.

I feel strongly for you and your family. This is, alas, the world we live in today. Our control over our situations is tenuous, at best, and the insurance industry and the government, alas, are largely responsible for this.

If you would be comfortable with me contacting the Presbyterian church in your area (my denomination) or even feel like, "Hey, what could it hurt?" I'd be honored to do so. If I could think of any other way to help that wouldn't straddle the line of religion, I'd be on it right quick (although I think contacting your local media, as others have suggested, is an excellent idea).

All the best to you and yours.
SherpaDave.
(Reply) (Thread)
From: surrealbadger
2005-03-26 11:57 pm (UTC)

Overwhelmed...

Wow. I'm pretty overwhelmed with the response that my previous post elicited. It feels good to hear words of support and encouragement -- about the "good fight" we must engage in politically, about my family's situation, about my writing, about my strength.

I've got a million more thoughts and emotions swirling around in my head right now. Sometimes I feel like I'm drowning in all of it. Sometimes I feel like I'm floating through it. Sometimes I want to scream and thrash about like a toddler who wants graham crackers when there's only saltines.

Dammit.

Living wills and lymph nodes. Broken hearts and bankruptcy. This is not my beautiful life...
(Reply) (Thread)
From: (Anonymous)
2005-08-20 03:14 am (UTC)

Re: Overwhelmed...

no womyn this isn't your beautiful life
(Reply) (Parent) (Thread)
Re: Overwhelmed... - (Anonymous) Expand
From: (Anonymous)
2005-03-28 03:06 am (UTC)
I am so very sorry. My thoughts and prayers are with you and your husband and son.

*hugs*

God Bless you,
Augie
(Reply) (Thread)
From: (Anonymous)
2005-03-28 03:48 am (UTC)
I'm so sorry to hear that. My thoughts and prayers are with you and your family.

{{{{{BIG HUGS}}}}}

Cappy
(Reply) (Thread)
From: (Anonymous)
2005-03-29 05:01 pm (UTC)
I am so sorry.

My FIL just died of spinal cancer. The pain was so bad he wanted to kill himself. He begged us to help him. The doctors keep telling us there was nothing they could do for him.

Deonna
(Reply) (Thread)
From: (Anonymous)
2005-04-01 03:53 am (UTC)
My name is Patricia, I'm not a live journal user but don't want to be anonymous...anyway..have you gone to the press with this story???...I just, god, I'm soooo sorry, but, well...go to the press, stand with a sign outside of the office of the lunatic that makes these decisions and GET YOURSELF ON TELEVISION!!!! PROTEST!!! call the local papers, the government isn't going to do anything, nothing, make them look bad, they are bad!!! There must be groups where you live that do this sort of thing, there are groups for everthing, rally support from your friends, neighbors and family and launch a campaign, you WILL GET SUPPORT YOU WILL, and god, you might even get some money...I'm soooo sooo very sorry, my prayers are with you and your family. Patricia Parkinson
(Reply) (Thread)
[User Picture]From: dekion
2005-04-05 09:26 pm (UTC)
Badger...

We don't know each other well, mainly through a mutual friend, but you've always had my utmost respect. My younger brother will need a liver transplant sometime soon, due to a condition that causes the bile ducts to be blocked with scar tissue. He's not advanced to that degree as of yet, I am just now starting the process to see if I am a genetic match in case we have to do a partial transplant. I remember a few years ago when my stepfather fought his own battle with cancer, and finding the marijuana that he smoked to help him recover after his chemotherapy. I saw the difference in him, the changes for the better. And I could not believe that he had to break the law to do this.

All I can truly offer to you is words of support and what understanding I have, and shared anger at the idiocy and ignorance of some people. You both are definitely in my thoughts.

Shawn
(Reply) (Thread)
[User Picture]From: mghopper13
2005-04-05 09:29 pm (UTC)
Im sorry to hear all this has been going on.

Just know Im thinking about you.

Mightygrasshopper (tweeks)
(Reply) (Thread)
From: (Anonymous)
2005-04-07 04:53 am (UTC)

*HUGS* & Prayers

Badger,

I know we never got to talk at tweeks, but I wanted to wish you and your husband well in your current plight. And to let you know you're not alone in your situation. My mother and my father were put through hell by both medicare and my father's insurance company when my mother was dieing from liver failure. My mother was already disabled from an earlier medical condition and was elegible for help through medicaid towards some of her medical bills, but they weren't covering anything at all on them at first which left my parents with the full brunt not covered by my father's medical insurance. Ultimately medicaid did start covering something towards the bills after my parents were made aware that medicaid should have been covering on the bills all along (though they wouldn't cover anything on the bills already incurred before they started to cover some ofd the stuff cuz they said the bills were too old).

You and you're husband are in my prayers. Hopefully things will brighten up for both of you and you find comfort and peace in this situation.


Meelee
(Reply) (Thread)
From: (Anonymous)
2005-04-17 11:47 am (UTC)

More big {{{hugs}}}

My thoughts and prayers are with you for as long as you need them. Don't give up hope!

~ Nutz
(Reply) (Thread)
From: (Anonymous)
2005-04-21 01:45 pm (UTC)

candles lit for you

I just read this from a link on Dave Clapper's blog.

I am furious. And deeply sad.

I live in fear of something like this happening--all Americans should. And should do as much as they can about it. With our votes. But of course, Nov 2 showed how likely that is.

Your story should be told as far and wide and often as possible.

I am lighting a candle for you and your husband and family. And shall continue to do so.

Peace.

Maryanne Stahl
www.maryannestahl.com
(Reply) (Thread)
From: (Anonymous)
2005-05-07 03:22 pm (UTC)

Re: Mr. Badger and OHSU, etc.

Hi Badger!

I clicked on your OT link. Read lots of your blog, you're a great writer. Do you actually live near OHSU? I am wondering how Mr. Badger is doing. You guys are brave. I truly hope he is all right.

I just moved to Portland and I love it here. I am living near my mom while finishing school myself. Just finished an advanced English Comp class for which I got a very high B because I turned one paper in late due to illness and didn't get APA format just exactly right (I'm used to legal writing). I was pissed, but I'm over it now.

I love the deep-end subject posts you make on OT.

Best Regards,
Kahuna (kahanasunset)

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