Shrinking… shrinking…shrunk.

12 08 2013

This post has been sitting, unpublished, for quite some time. It’s been tricky for me to hit the post button on this one. But, here I am, in bed, on dilaudid, facing the possibility that I may be checking in for my fourth (FOURTH!) hospital stay of 2013, and it seemed a good time to let this one out there…

I have a really good dishwasher now. I’ve never had one before. This one has all sorts of settings, like how hot you want the water to be, how sanitary the dishes should be when they’re done (which, by the way, does this mean that dishes typically emerge un-sanitary?) and how long you want it to wash for, when you want it to start, and what you’d like for breakfast in the morning. Before, my dishwashers were just on and off. And they just picked up the grime from the dirty dishes, swirled the grime around a bunch to mix it into a brown grime batter, and redistributed it on all the dishes, so I could have the pleasure of standing at the sink for another hour chipping dry grime batter off all the dishes as they came out of the dishwasher.

But this one is different. This is a DISHWASHER. If I set it on super hot, sanitary rinse, heated dry, extra forceful water-guzzle-put-a-hole-in-the-ozone setting, I can drop completely full bowls of cereal in that puppy and have squeaky clean dishes an hour and a half later. It’s awesome.

Except for one thing.

After running it like that for the first time, I was unloading the dishes and putting them away. I have an über-organized container cabinet. It’s the only thing in my life that’s über-organized, and I’m crazy about it. Lids go on the containers, and they are stacked by type and size. None of this nesting the containers inside each other, letting the lids go all willy-nilly mess. And if by some act of God I lose a lid or a container, and I end up with a floater, it stays tucked away to the side for about a week, giving its partner a little time to show up under the kids’ bed, before it goes to the trash. I will not tolerate uncoupled containers or lids.

So, I’m unloading dishes. I pick up a glass container and its respective plastic lid. I try to pop the lid on as I spin around to place it in the cabinet. But the lid won’t go on. I look in the dishwasher, study the lid, look at the brand of the container, double checking I have the right pair. I do. I try again, and it won’t go on. I put it down on the counter and push on one side. It pops into place. I push on the other side, and it pops into place, but the first side pops up. So I push it down again, but this just sends the other side back up. I stood there, like a fool, pushing on this lid, going around in circles, for a solid five minutes, with little tantrum breaks. I was being pranked, I felt sure.

After it sunk in that if someone really wanted to Ashton Kutcher me, Tupperware wouldn’t have been at the top of their list, the reality of the situation came into focus. My crazy dishwasher and it’s boiling water had shrunk the lid of the container, just a tad. Enough to send me into crazy-times in my kitchen that morning.

The pieces went into the recycling bin.

This is a post that’s been weighing on my mind for quite some time. It’s not a post about dishwashers. It’s a post about money. Specifically, what role money plays in the lives of those with long-term serious illness.

It’s a subject that rarely gets mentioned in any sort of a relevant way, I feel. Sure, you hear about people on NPR whose lives have been ruined by hundreds of thousands of dollars of devestating medical bills, who’ve gone through bankruptcy again and again and lost their homes and jobs and insurance won’t cover their life-saving treatment. It happens to good people. People who don’t deserve it. It’s a horrific situation.

You also see people all over social media raising money for the kid down the street with cancer, or the mom who got hit by a car and is in a coma, or the soldier who came back maimed and can’t work. And those people have thousands of dollars raised for them by caring individuals in their communities and annonymous well-doers touched by their facebook page and businesses who host fundraisers (and get a shitload of awesome publicity, ahem.) If you’re one of the people who’s given to families in need, I commend you. We need more people like you in the world, who are sensitive to the suffering of others and want to help fellow mankind have an easier walk through the rocky roads of life’s hardships. And if you’re a person who’s been sick, and your friends and families have rallied around you and helped with your medical bills and living expenses and maybe even given you gifts and sent you on vacations, that is awesome and I am happy for you. I really am. Because I know first hand what a stress money issues become on sick people and their families. It can take over your life. Fast.

But most of us are in the middle of these. Most of us either have some insurance, which leaves us with giant co-pays and deductibles and procedures not covered, or don’t have insurance and get hospitals to write off some of the bills and work out payment plans for what’s left over. Either way, we’re drowning in debt that follows us around the rest of our lives, knowing full well we’ll just keep wracking up more debt for as long as we live, and we probably have less income than we used to, because we miss work and miss pay, or our spouses have to take time off to care for us, and we’re trying so, so hard to squeeze the lid on the container. It used to fit! It IS the lid that came with the container! But now there just isn’t enough lid to squeeze around the rim. What happened?

This is my monthly budget: Every single paycheck, I write down what expenses we have, then I subtract them all from the paycheck amount, and then I use the negative number I end up with at the end to revisit the expenses and determine what’s not going to get paid this time.

If we have an emergency, and we always do, forget it. We either can pay for it and sacrifice another bill, or we can not pay for it. We most often opt to not pay for it.

Many of us with diseases live like this. Many of us get hospital and doctor and lab bills every day in the mail that we throw into a pile on the kitchen table. When that pile gets too big, we move it to the BIG pile in the office. When that pile gets too big, we box it up and throw the box in the basement. Which we periodically dump out and frantically search through when we need a copy of a birth certificate or car title or something because we can never find those stupid things. (Or, that’s just me ?)

Many of us don’t answer 800 numbers, or any number we don’t recognize, because we know it’s a bill collector. Many of us write and re-write and re-re-write the numbers in different orders, hoping to somehow make it all add up. Many of us ponder bankruptcy, but feel like we maybe aren’t really there yet(?). Many of us grapple with the decision of whether or not we should try to work and risk our health for the sake of paying bills, and risk losing our tiny disability payments and Medicare that we spent 3 years fighting to get. Many of us are seized by guilt every moment of our lives for the burden we’ve placed on our families.

Money is so paradoxically personal, and yet on display, in American culture. Polite people don’t really talk about it. You’re not supposed to tell people how much you make, or how much you spend. You’re just supposed to look like you make and spend an appropriate amount, whatever that is. Eric and I have been struggling with money for years. We’ve spent a lot of our lives trying to hide that fact from people we know, making excuses for why we can’t go to Bermuda for a wedding or rent a beach cottage with friends or why we just “needed some more time to try to find the right place” when we moved in with his parents. Fact is, we’re broke. Some of it has to do with bad money management habits, not being frugal enough, not saving the right amounts.

But mostly, these days, it’s because of my disease.

If I was well:

-I could work at least part time and make good money. Enough to fill in the gaps anyway, and even save a little. I’m educated! I could earn a few bucks. I did, before I got sick.

-I may have been in a position to upgrade my busted computer and software so I could continue to do some freelance graphic design, and my kids would have a better tool for educational purposes. Instead we struggle with an old, broken down machine that’s beyond software upgrades and is useless to half of the internet, and can’t run Adobe programs without checking out to race its engines every five minutes before ultimately just giving up all together.

-I would never have gotten to the point of having a credit score in the double digits that feels beyond repair with loads of medical bills. And, by the way, if anyone ever tells you that medical debt doesn’t matter on your credit report, they’re lying! They don’t know what they’re talking about! Come talk to me and I’ll let you ride in my 23% APR car that I had to buy with my awesome medical bill credit history.

-I wouldn’t be so desensitized to medical bills that I just made no effort anymore with them. When you have ONE, and they ask you to set up a payment plan, ok. That’s doable. When you have 25, and they all want you to set up a payment plan of $20 or $50 or $100 a month, not so doable. So you just ignore them all. I’ve devoted way more energy and time into correcting insurance mistakes, billing errors, applying for aid, reapplying for aid, etc. than I have to just trying to be as healthy as I can. Seems like a bad deal for the insurance companies to me, when the stress they create literally makes me sicker, but what do I know about the big bad insurance industry?

-We probably wouldn’t have been in such a pinch when Eric had a dental emergency a few years back, and left us with a huge bill we couldn’t pay. And dentists, unlike hospitals, are under no obligation to accept your payment-plan plans, and can insist on nothing less than two payments of half over two months, or nothing at all, which is what ours did, so we paid nothing and three years later without warning they started garnishing it from his wages, so our paychecks have been hundreds of dollars less than they should be the last couple of months.

-And maybe we’d have some savings so that when Eric went to a good accountant to have his taxes done and found mistakes from years past that meant we owed a bunch of money, we could have paid it then and there. Instead, we offered payment plans (are you seeing a payment plan theme in my life yet?) and while the federal government accepted it and now deducts a relatively small amount from our bank account every month for the rest of forever, the state government just didn’t, and again, started garnishing wages, so that our already smaller paychecks lost another couple of hundreds of bucks for a few months.

So let me do that vague math for you: Our income is almost $1000 short per month these days.

I don’t care how much you make, that’s a pretty devastating shortage. Trying to hide that sort of financial crisis just doesn’t work. It’s rent that can’t get paid, kids that don’t get to go to summer camp, internet that gets turned off, gas that can’t get put in the tank, groceries that don’t get bought. It’s not hide-able.

But I’ve been (almost literally) killing myself to pretend like everything is ok. We have a lovely (rental) home and a car in the driveway, kids who do the summer reading program at the library, a guy who goes to work in a suit and tie everyday, a mama who goes to yoga twice a week (which she gets for free in exchange for doing some work for the studio) so everything looks perfect from the outside.

But we are so -not- perfect. I am crumbling. I am fatigued from trying to squeeze this lid on my life. I’m sweating, out of breath, trembling, with bleeding blisters on my fingers, trying to make this lid bigger than it is.

And so I’ve started telling my friends. I just couldn’t pretend anymore that things were fine. And you know what I started finding out? Many of them aren’t fine either. They’re struggling to pay off student loans and car payments and and it gives them nightmares, or they’ve ruined their credit scores by ignoring their Target card statements, or they’ve got a mortgage bigger than they can handle and they’re living off their 401K.

But we all put on our lipstick, fill our wine glasses, and smile and chat about lawn mowing services.

For REAL y’all?

Look, if we all suck with money, then we need to acknowledge it, stop judging each other, and stop comparing our own insides to other people’s outsides. ESPECIALLY those of us who are struggling with illness. Money is a source of stress, and stress is poison to a sick person’s body. Lying is also a source of stress. Money and lying together are enough to shut you down.

And if you’re one of the ones who DOESN’T suck with money, help a sick sister out! And I don’t mean by giving your money away. (Fundraisers are nice, but I wonder how much they help people in the long run?) I mean by supporting your friends who aren’t doing so well in other ways. Like, first off, don’t invite us to the Bahamas. We can’t go. Instead, come over to our houses, bring us booze, sit down at the table with us, and help us work out our budget. Tell us what you’ve done to get your finances in order. Talk to your rich friends to find out if anyone is, or uses, a good fee-only financial adviser who will donate their services for a short time to help get things on track. Offer to babysit for free if we need our spouses to get a second job to cover expenses but the thought of being home alone with the kids for 20 more hours a week is terrifying. Help us sort through medical bills and call hospitals to make sure everything is being billed correctly, because that alone can be a full time job. Cook us dinner once a week, because time with friends is like medicine, nights out on the town are just not an option for those of us who are financially challenged, and saving the cost of even one meal can be helpful to us.

It sucks putting this out there. It does. It’s degrading and embarrassing. I feel like I am too smart for this to be my life. But it is my life. And a few weeks ago, when I was feeling particularly hopeless and I was sobbing to my parents after we had to tell the landlord he was only getting half the rent payment and the next half would come with the next paycheck (hopefully,) I heard myself saying “I am just so terribly disappointed in life. This is not how I thought it was going to be.”

And it got me thinking that I bet most folks who’ve been handed a serious diagnosis are feeling the same thing. Not only are we less able than we’d like to be, less energetic, less clear-headed, more restricted, more isolated, but we’re probably all pretty fucking broke, and angry and sad and stressed out and ashamed of that.

Well, I’m ready to at least stop being ashamed. I may be angry and sad and stressed out still, but I can at least stop being ashamed. How about you? Ready to slap it on your sleeve? “POOR AND PROUD!” Let’s start a movement, y’all.

There’s just absolutely no reason we should pretend to keep up with the Jones’. The Jones’ might be underwater with their upside-down mortgage, paying for their automatic sprinkler service with the credit card that’s almost maxed out, the balance of which they’ll just transfer to the next lowest interest rate offer they get so they can max that one out too, strapped with huge car payments and if anyone loses their job they’re ruined next week. Maybe not, but my point is, you’d never know.

For those of us who are sick, we simply can’t afford to worry about what we can’t afford. If you are the supporter of someone who is sick, please remember that in almost every circumstance, the financial side of disease is just as eroding to our well-being as any physical symptom. Ask us of we’re ok, and listen to us when we say we’re not. That’s all. Listen. Without judgment. Without political agenda. If we can all just admit that the damn lid shrank, toss it out and move on, there’d be a lot less crazy in the kitchen.