White privilege

Yep, it’s everywhere, including health care.

I’ve been tapping away at my book again, and I had to take a hard stop. I was suddenly aware that my experience drips of white privilege. Or maybe just privilege because too many white people don’t have (good or any) health insurance either. So I have to take a new tack.

It’s easy for me to talk about accessing alternative treatments like acupuncture, Chinese herb therapy, physical therapy, lymphatic drainage and psychotherapy because I could afford them. I have laid out complete tirades on this blog before about how I paid $17,000 for out of pocket for treatments that made a huge difference in my ultimate outcome. Outrageous! But you know what? I did it. I paid it. Every last cent. We didn’t go into debt over it. We still had food. We still paid the mortgage. Hell, we even still took trips and ate at fancy restaurants. No one went without shoes or Netflix (the horror!).

It was just inconvenient for us. I would rather have put that $17,000 toward upcoming college expenses, but it was diverted. Because it was there to divert.

But what about people who work their butts off, have (inadequate) insurance but struggle to meet all the bills? What are they supposed to do? What about people who work and have NO insurance, what the hell are they supposed to do when cancer strikes??

This isn’t the first time I’ve thought about this. I thought about it A LOT when I was undergoing treatment. I heard plenty of stories about women who had to continue working while getting treatment, and my heart just broke. I continued to remind myself to be grateful for what I had.

My treatments were so powerful that they left me utterly spent. Who wants to talk about the truth of cancer treatment? No thanks, it’s much prettier and socially acceptable to wave pink ribbons and talk about how to “rock” short hair. But the truth is that cancer treatment left me drained, in every way that a person can be.

I had diarrhea so bad that I lost 20 pounds (and I’m thin to start with). My doctors had a very close eye on my weight and my diet was very strictly regimented so as not to upset my precariously balanced digestive system that could easily be tipped in favor of the dreaded fiber and start the cycle of diarrhea all over.

I couldn’t leave my bedroom/bathroom for about ten days after a chemo infusion. During that time, my family brought me food. But the extreme nausea kept me from eating most of it. I’d try. And sometimes it agreed. I could get it down. But it tasted like nothing (at best) or, more typically, like someone poured disinfectant in it.

After about ten days of that, my body was rid of the excess of chemo drugs. By then, I had broken out in burning, irritated red skin eruptions, my muscles and bones ached yet a little more, I slept a few hours here and there thanks to legal marijuana, I had a literal hard knot where my pancreas lay, I wore a path to the toilet, my hands and feet got a bit more numb and tingly, and my heart pounded in my chest from simply rolling over.

One cold dreary day in February, a good friend of mine, in a thoughtful and caring attempt at comforting me, said, “Just pull on a cozy comforter, stay warm and sleep.” It made me cry. Not because it was so thoughtful, but because it was so impossible. If I could’ve pulled up a blanket and slept my way through chemo, I would’ve done it in a chemo-paced heartbeat. But sleep was out of reach due to the high doses of steroids (stimulants). And my stomach burned with acid. And my intestines gurgled with the lurking possibility of an eighth diarrhea episode. And my hot flashes made me kick off the covers every few minutes while dripping with sweat only to be so cold the next minute that I was shivering.

But, after these 10 days, I was ready … to come downstairs.

For the next 11 days till my next treatment, I ate white fish, white rice and a few (about six slices of) vegetables for breakfast, lunch and dinner. Those delicious meals that people sent? Thank god for them! But they weren’t for me. They were for my family. I was typically the meal planner, shopper and cook — yet more duties taken on by my husband and sister. I would sit outside on my deck for a few minutes but the sun was intense and rose my heart rate quickly. It felt like I was running up a hill but I was just sitting on a chair in the sun. It was a strain.

I tell you this not for sympathy. Nor to scare you. I tell you this because I was one of the lucky ones. And I know it. I didn’t have to go to work during this. My sister was able to work a flexible schedule so that she could fly to Denver and help. I honestly don’t remember how many times she came out. It was a lot. And, my husband had a job where he worked from home, and so he was able to care for me and our kids. He worked a great job, in fact. He earned a high salary, he had flexible hours and he had a kick-ass employer sponsored health care plan. It was so good that even my healthcare workers would remark that they never see them that good.

It was so good that I find myself now grateful to have been under that plan at the time and not our current one. We still have employer sponsored health care, but it’s with a small, privately owned company that’s German. And the Germans? Well, they don’t need employer sponsored healthcare because the government picks up the tab. (See the next segment for a side-by-side comparison.) With only about 10 American employees whose families who need coverage, there’s considerably less buying power.

During that time, I can’t imagine having had to get up and go to work. Cook meals for my kids. Drive. And most of all, worry about how we would afford all of the treatment and still keep our house. Our cars. Food.

It’s a crazy, messed up system!

You know why Donald Trump doesn’t care about how to fix healthcare? Because he doesn’t have to, and he’s just selfish enough to not care about the rest of us. He’s the worst kind of person. The privileged kind who thinks he’s not and just doesn’t care enough to understand that he didn’t get where he is by hard work alone. I understand, loan from his dad turned real estate mogul and Harvard and blah, blah, blah. Well, we might as well wipe our asses on that diploma for all the good that premium education has done for this country!

My husband and I didn’t grow up rich. I am the youngest of nine kids. I come from a small town in Ohio that thrived on the pottery and steel industries. My dad was a steel worker for 32 years. When I was about 12, the mill shut down and that was that. Fast forward 34 years and you can find our little river town on the front page of the news with heroin addicts passed out in the front seat. I know what happened in the rust belt. I grew up there. I always had a house, clothes, food and healthcare. But I knew many who didn’t. I went to college at a state school on Pell grants and loans. But I went. And in a few days, I’m going back for a second degree. I was raised with an appreciation of education and health. My mom taught me how to cook real food. And my dad loves to read. I had advantages. I get it.

My husband came from a family of two kids, raised mostly by his single mom with help from his grandma who lived next door. His mom was a nurse who worked shifts. So, grandma was a godsend who opened her heart and home to help out however she could. Michael’s mom was educated and worked hard to get out of shift work and become a VP. And still, she sewed clothes, polished old shoes and budgeted carefully. When it came time for college, my husband took it upon himself to sign up for military service so that he could qualify for GI Bill benefits after serving his time. Michael didn’t end up in the military, though, because his grandmother wasn’t having it. She marched down to the recruitment office and gave the officer a good “Whatfor” and voila! Michael wasn’t going to the military. (That poor recruitment officer didn’t know what hit him). He went on to college and is now gainfully employed. He had help too.

My point is this, while we had less than some and more than most, we know what it’s like to be dangerously close to going without. We have grown up appreciating what was given to us. And I’m still grateful for all the care that allowed me to heal.

But…

enough of this “there but for the grace of God go I” bullshit!

It’s not the grace of God that provides healthcare. And good jobs. And a sustainable supply of affordable and nourishing fresh food. It’s the government. It’s the ability of people (no matter their skin color) to get a small business loan. It’s the farmer who can make a living growing ethically raised chickens and not be forced into factory farming because he can’t afford the open space for fewer chickens.

I am not trying to get into a religious battle here. I’m simply saying that it’s not always the will of God that makes things like they are. Sometimes it’s corrupt governments, racism and greed.

We are all equal in the eyes of God, right? It’s only our own creation of a class system that has screwed things up so royally.

If we all stopped fighting each other, then we could focus on the important things like affordable healthcare, climate change, clean water, healthy food.

Hell, even Jon Snow, who knows nothing, knows enough to convince Queen Danaerys and Queen Cersei to drop the fight for the throne long enough to unite to fight the force that will kill them all — the Army of the Dead. We could learn a thing or two from Game of Thrones, here, friends.

Simply put, human rights are not in limited supply. If one groups gets equal rights, it doesn’t mean less for the other groups. Humans are a greedy bunch, though. I had a friend tell me that he voted for Donald Trump because he feels that white men are becoming marginalized in our society. I’ve given that statement a lot of thought. And I’ve decided that it’s just not true in the slightest. What’s happening is this: white men are given equal (I could argue still greater than equal) voice to women and people of color for the first time in history instead of the hugely disproportionate weight their voice has previously been given. In the past it’s worked out pretty well for the white man. Women and POC? Well, that’s another story.

Germany wins at more than soccer and beer

Earlier this summer, my family and I spent time in Germany. One of my family members developed an eyelid problem. It was one of those funky things that even in our own country we would’ve looked at each other and asked, “where do we go for this? The eyeLID doctor?” It wasn’t a vision thing, but when you mention eyes, everyone says “You need an eye doctor.”

So we started trying to figure it out in all the usual ways: Front desk recommendation from the hotel, internet, map and as a last resort (eye roll) … calling the infernal insurance company. In the end, we went to Universität Klinikum. It’s equivalent to our university hospitals but has walk-in clinics.

First we went to the emergency department. There, the Canadian triage nurse spoke enough good English that my feeble attempt at German was quickly met with “Oh, that’s not an emergency. You need to go to Building 101B. That’s the eye clinic.”

Skeptical as we were to be turned away, she was right. We walked in to the eye clinic, muddled our way through a German/English intake and an eye exam. Two doctors later, it was diagnosed as an allergy and we were given a prescription to fill at the Apotheke (pharmacy) around the corner.

Upon checkout, we were told that we’d have to pay upfront and ask our American insurance for reimbursement. We held our breath for the bill. It was 71 euros, which is about 84 bucks. What a relief! But the really refreshing part was that the bill had each service that that clinic offers itemized with a correlating pre-printed price. A fixed price. For everyone. Regardless of whether you’re American, insured, or not. They didn’t have a price based on your “negotiated” or “contracted” amount. It just was what it was. Consultation = 11,95, Refraction = 14,25, Microscopy = 15,65 and so on.

Then once at the Apotheke, the pharmacist stood at the register, punched in the number of the medicine and it was dispensed through a vaccuum tube. She talked to us about frequency and duration and known allergens, etc. And then she said it would be 17 euros or about 20 bucks.

We marveled at the ease and affordability. We marveled at the care and concern. We marveled at the competence. We marveled at the expedience and efficiency.

And now, an American experience.

After returning from Germany, my kids got a skin rash and felt sick. We were thinking chicken pox but wanted to be safe, so off to the doctor they each went. Zach in NC, Aspen in Denver, CO.

Zach’s appointment was uneventful. I paid the $35 co pay at his Pediatrician and got the prescription filled for $12 and that was it.

Aspen however, doesn’t have a regular doctor in CO. At the time we were moving, our doctor was closing up shop. And in that year, she hasn’t needed a doctor. Being young and healthy, it wasn’t top on our priority list.

So she needed a doctor. After looking for two days, it became apparent that one cannot quickly “get a doctor.” It would be weeks, if not months. So I told her to bite the bullet and go to Urgent Care. We’d pay the higher co pay ($100).

She asked me which is best and we agreed on the one we knew and off she went.

A little while later, she texted me that the co pay was $500! I was incredulous. She further explained that the place we decided on was an ER, not an Urgent Care. And our (aforementioned) insurance plan has a $500 co pay for an ER.

I asked her when they told her that the co pay was $500. She said that they told her once she was already being seen and in the exam room while the doctor stepped out to write an Rx.

So I called and asked the intake person why she didn’t explain to her that they’re not an Urgent Care and send her away? And her response to me was “I was very clear to say, ‘What brings you to the ER today?'”

I was so mad, I saw stars. So I did what I always do when idiocy runs rampant: I got snarky. I told her that I was certain that she did whatever she needed to legally do to cover her own ass, but that a decent person would inform a 19 year old that she’s in the wrong place. (We’d been there before for minor stuff. I don’t know if it changed or we just had better insurance at the time.)

The intake person further explained that she assumes that all patients understand the ins and outs of their insurance, and it’s not her job to make sure that they do. She added that perhaps my daughter could benefit from my teaching her the difference between an ER and an Urgent Care.

God forgive me for what I thought next.

So now, we are stuck with a $500 co pay AND whatever bill they throw our way for “medical care.” BTW, Aspen ended up telling the doctor what Zach’s doctor diagnosed and he just wrote that down and then proceeded to ask her what medication he was given for it. She texted me (mid-appointment) to ask for the medication name so that her doctor could write the prescription.

If you read this and think that you’re smarter than this and it wouldn’t happen to you, maybe you’re right. Maybe this scenario won’t. But something will. Our system isn’t geared toward ease and affordability. Or toward care and concern. Or toward competence, expedience or efficiency. Our healthcare system is designed to do one thing: appear to be providing healthcare while making insurance companies richer and richer.

The sad thing is, that lady at the front desk? She doesn’t even realize that she’s being used in their scheme.

Who’s so smart now?

 

 

 

 

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3 thoughts on “White privilege

  1. Ok.. I read through all this because I am in a similar boat. Yet another trip to Houston for scans this week, draining our bank account and paying crazy deductibles. Praying this was my last trip for a while, after almost 1 year post liver resection. Yes, I have this shitty rare cancer that is called Cholangiocarcinoma. I know many have not heard about it, but it is ” bile duct cancer”. I had a 50% liver resection removal last year in September. Let’s not even talk about the insurance issues and all the obstacles, just to prolong life. I am 48 years young with 4 beautiful boys and a loving husband, who would give me his “kidney” if I needed it.. This is a joke, he was so distraught when I received my diagnosis, that he offered his kidney instead of his liver.. Well, here I am again in the same boat, cancer is back and now on the other side of my liver, meaning chemo and then another resection. Worried if insurance will cover and how are we going to continue to get to Houston from Charlotte? How will my boys handle this news? They thought Mom was getting through this like a warrior. We have not spoken to them yet..but the bomb has to come sooner or later. Trying to at least get them ready for school and in my mind dealing with the budget of how are we going to do this.. I was almost convinced I was one of the rare cases, I had beat this thing..but all I can do is shake my head and then start the waterworks. What will happen in January, will I make it to surgery or will my insurance deny it? This all just sucks.. Thinking of starting a “go fund me”.. but this is all too scary. Once was enough, but twice just isn’t fair.. Thanks for letting me vent on your blog.. Please keep me and my family in your thoughts and prayers..

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    1. Dear Cindy, I am so sorry. I will keep you in my thoughts and prayers. I will send positive energy and healing thoughts your way. Don’t fool yourself — you ARE getting through this like a warrior. Just take one thing at a time. And live in the present moment. Sending you all the positive thoughts and warrior spirit vibes I can muster. Take good care, Erika

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