She Didn’t Deserve This

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Below is what I wrote one week ago upon hearing the news that my aunt was told she has two weeks to live. She made it four days. I loved her dearly and miss her terribly.

17 Apr 16

I just had one of the toughest conversations I’ve ever had in my life. My aunt, whom I’ve always been very close to, is dying. She’s been bravely fighting cancer for some time now. She won quite a few rounds and has been declared cancer-free a couple times, but this looks like the end. I just had to hear her tell me she has about two weeks to live. Two. Weeks. To. Live. How does one respond to that? I didn’t know either. It kills me to lose someone so good and so close.

First, a little background. Aunt Patty is my mother’s sister. She’s only 13 years older than me. She was kind of caught in between generations at the family gatherings. She wasn’t old enough to be a full-fledged member of my mother’s generation, but she was older than her nieces and nephews. She spent a lot of Thanksgivings with us at the satellite card table away from the main dining table. Growing up she was much more like an older sister to me than she was an aunt. She was one of a very small handful of people that made me feel important as a kid. She was one of those great people who listened to me when I talked and was legitimately interested in what I had to say. She talked to me as a peer, never talking down to me from some lofty perch that was the exclusive dominion of adults. She was great fun to be around as I grew up. We spent a lot of time on the water boating with my grandparents. We traveled on the boat all over Florida and went to the Bahamas together one summer. I remember her being the first person to get me on a dance floor that trip. Spending time with her was always easy and always enjoyable. We laughed. A lot.

Additionally, she was a role model. I’ve been very fortunate to have a couple brilliant, talented, and independent aunts who really shaped my views on women and Aunt Patty was half of that dynamic duo. She went to college, earned a degree, landed a good job, and bought a house. Each job always became a better job, the houses continued to become nicer houses, her professional accomplishments never stopped. And she did it all on her own. Never did she have to depend on a man. She was strong, independent, and successful.

For all these reasons and more, I love her. A lot.

And for all these reasons and more, our conversation today was difficult. Painful. Sad. It cut through me. It wounded me.

And that really should have been bad enough, but a couple things really struck me after I told her one last time how much I loved her and said goodbye. And I’ve chosen this forum to vent about them a bit. It’s all I know to do right now.

First, a bit more background. My grandparents, Patty’s parents, were living a very comfortable life when I was growing up. Grandpa owned the Goodyear store in Apopka, a small town just outside Orlando. They lived in a beautiful house on a golf course in the nicest neighborhood in town. They had a series of boats starting off with an 18′ bow rider that we went up and down the St John’s River on, progressing to big boats that the family would all go to the Bahamas aboard. Life was good for them. But Grandpa had heart issues and Grandma got breast cancer. The hospital bills ended that good life. They had to sell the nice house and move into a condo. They had to sell the store. They had to sell the boat. The hospital bills devastated them financially. They never recovered.

We all saw it happen. We all felt bad about it. But that wasn’t where it ended for Patty. She was smarter than most. She used that experience to make a plan. She had to be sure it never happened to her. She worked and put aside money specifically for any catastrophic medical situation that might arise. She had to be sure that no unforeseen healthcare issue could bankrupt her. She had a significant amount of money set aside for just such an emergency. She had a plan. It was a good plan. But it wasn’t good enough.

Where did it fail? She was laid off her job during the economic downturn and lost her health insurance. Then came the cancer. She had cancer and no health insurance. Thankfully, the Affordable Care Act had passed and she was able to get an insurance policy. It wasn’t as good a policy as she once had, but it was much more than nothing. But cancer treatment is expensive, much more so in this country than anywhere else in the modern, industrialized world. And it began to eat into her savings. Her health prevented her from going back to work. The radiation and chemo treatments took their toll on her body and her savings. To date, she’s run through her substantial savings because of the cancer. Her solid plan failed. A month ago I was visiting her and she was explaining to me her disbelief that what she thought was a foolproof plan did not succeed. She told me that she had promised herself that what had happened to her parents would never happen to her. But it did. The EXACT SAME THING happened to her. It happened to someone who took deliberate steps to ensure it didn’t happen. How could she have failed she asked me. I told her that the problem is simple – we are the only first-world country on the planet that allows our healthcare system to be run by two giant for-profit industries – pharmaceuticals and insurance. The entire healthcare system is set up for them to make billions of dollars. Most nations have healthcare systems centered around providing quality care to citizens. Not us. We’re set up to pay dividends to share holders. For us, it’s profits over people. And as long as that remains the case, there will continue to be hundreds of thousands of people driven into bankruptcy by medical bills every single year.

It’s not right. We’re the wealthiest country on the planet. Healthcare ought to be a right. The health of our citizens should be a higher priority than the profits of insurance and drug companies. It’s immoral what these corporations do to people. But for us, we don’t see it as a moral issue. We see it as a political issue. And we’re all so firmly entrenched on our chosen side of the political battle lines that we refuse to consider anything that might dare move us away from that comfortable position. Turn off the Fox News people. Quit listening to politicians who receive millions to be the mouthpieces of these industries. Try to think for a minute about what exactly it is you hate about “Obamacare.” Is it the care? Or is it the Obama? We have to do a better job. Healthcare is a human right. We love to fancy ourselves as the greatest nation on earth. Well if that is the case, we surely ought to have the highest quality healthcare on earth. We don’t. It’s not close. Our citizens should have the longest life expectancies. They don’t. It isn’t close. We should have the lowest infant mortality rate. We don’t. It isn’t close. Our people should be the healthiest on the planet. They aren’t. It isn’t close. And why isn’t it close? Why aren’t we the best? Again – it simply comes down to our system valuing profits over people. We could have the longest life expentancies, the lowest infant mortality rates, the healthiest citizenry, the highest quality healthcare if we wanted these things. But we don’t. Because we CHOOSE not to. We make a conscious choice that money for these huge, insanely profitable corporations and the handful of super-rich assholes that run them is actually more important than how healthy our people are. Think about that from your comfortable position on your side of the political divide. Ask yourself if you’re ok with supporting that. And ask yourself if you shouldn’t be a voice that demands we get better. Ask yourself which you value more – people or profits. Don’t be swayed by the dogma, make an informed and a moral decision. And then, most importantly, take action on that decision.

Speaking of dogma, that brings me to my next point. Two years ago when her fight began, Patty needed a plan to fight her battle. In typical Patty fashion, she formulated a good plan. She assembled a team. She designated seven “Captains” who had specific areas of responsibility: an overall coordinator, someone for the kids and dog, someone for Grandma, someone for communication, someone was in charge of food, someone was in charge of maintaining the house, and I was assigned financials. I was added to an e-mail distribution list that detailed the plan and would be used to keep everyone informed of how she was doing and where help was needed. Although these people were very well-intentioned and I absolutely appreciate their efforts in helping my aunt, the e-mails immediately became an irritant to me. She had to undergo surgery. The e-mails became some weird prayer chain where everyone chimed in with “thoughts and prayers” as if that did anything at all.

As she began her fight against cancer, Grandma was an issue. Grandma was living alone in a condo Patty bought her and it was clear that was no longer feasible. She fell several times and was in the hospital too often. Patty needed to sell the condo and move Grandma somewhere with a little supervision. No one stepped up to take Grandma despite them all knowing what Patty was up against. They apparently couldn’t be bothered to help. So Grandma had to move in with Patty. I went down to Orlando to help move Grandma into Patty’s house. The condo was disgusting. Too many cats, too few litterboxes, and too little attention paid to anything. It was difficult to breathe. We got her moved and Patty listed the condo. After painting, replacing the carpets, etc the condo sold. The e-mails started. The praise for god was universal. These people actually believed that the sale of the condo was the work of god. “Praise him” for his assist on getting the condo sold. I couldn’t believe these people were fucking serious. They were thankful for divine intervention on the condo sale, yet no mention of why the asshole gave my aunt cancer. I let the e-mails roll through my inbox with no response. It was difficult for me to do, but I knew any counterpoint I offered would only upset Aunt Patty. She’s a believer too after all. She was also thankful for god’s help in the condo sale. And she knew that since she had always been his loyal and faithful servant, he would surely take care of her in this fight against cancer. Why wouldn’t he after she had been such a good Christian, right?

It really only ever got worse for me. They all talked about the power of prayer and how good and powerful their god was. They all KNEW he would deliver Patty from this horrible disease. It never occurred to them that he could have saved everyone a hell of a lot of trouble by never giving it to her in the first place. Eventually, she won. She beat cancer. The doctors declared her cancer-free. I apparently was the only one (actually there was one other) thankful for the science behind her treatment, for the team of medical professionals that cared for her and guided her through the difficult treatment, for the doctors, for the nurses, for the technology. The rest of them all knew it was god. He had waved his magic wand and removed the cancer. Again – no thought to why the asshole had made her endure it in the first place or for that matter why the creator of the universe had chosen to invent cancer at all (apparently he has a sadistic side). All they knew was that it was time to celebrate the omniscient and omnipotent deity who had intervened to save one of his followers from a horror of his own creation. Personally, I didn’t care about the hypocrisy of their praise, I was just thrilled that my aunt seemed to be ok. But in the back of my mind was always concern. We all know how this works – cancer usually doesn’t stay beaten. It often returns.

So I guess all the good Christians must have quit praying because the cancer came back. Maybe their god felt like they weren’t kissing his ass enough, so he sent the cancer back to remind them all to bow down and worship him properly. The prayer chains started up again. “We prayed it away once, let’s pray it away again.” Seriously. No thought to praying it away before it happened. Always reactionary. The Bible tells us that if you pray AND truly believe, anything is possible. The Bible tells us we can literally pray for a mountain to be cast into the sea and it will happen. But I guess these were your typical garden-variety Christians we were dealing with here which is to say they probably hadn’t ever bothered to read the Bible. So maybe they didn’t know how powerful prayer was really supposed to be.

I remember one particular period over a few days where she had some tests done. The initial word was that everything went great and the “praise the lord” chorus immediately followed. “Look how powerful our god is!” But a couple days later, the bad news came in that they had missed something. The results actually weren’t good. Silence followed from the congregation. God gets all the praise if anything goes right (even on a temporary incorrect assumption), but NO BLAME EVER when things go wrong.

Recently the cancer had returned and Patty was going back through chemo. I went with her one day for her labs where they run some tests to make sure she’s up to going through a chemo treatment. She was by now a pro, a regular. She knew everyone there. She navigated the hospital as if it were her home. I took it all in and it was really overwhelming to me. It was so sad to see how full the place was, how many people were enduring what my aunt was going through. I’m sure most of them had the same god or perhaps some other god to pray to, but it didn’t look like they were getting any better response to their prayers. I was struck by how difficult it must also be for the people who work there. They work so hard to help, they spend so much time with their patients, they come to know and care about their patients, and they see many if not most of their patients lose the fight. Despite this, these medical professionals were amazingly upbeat and incredibly helpful. One of the nurses helping us took time to go make some phone calls and get a workaround on an issue with a prescription Patty had. The insurance wasn’t covering enough refills and Patty was out with no money to refill it until the next month. (Makes sense, right? The drug company has to charge an arm and a leg in order to pay a really nice dividend and what would the insurance company tell shareholders if they allowed one more refill at that exorbitant price to help my aunt manage her pain that month. Can’t have that.) But upon hearing of the issue, this nurse went out, did some research, and came back with a new prescription for a different strength of the medication that the insurance would cover and that would last longer. She didn’t have to do that, but she did because she cared. That’s what I’m thankful for – people like that nurse who are actually doing something tangible. She made a difference that every thought and prayer ever uttered in history could not have made.

In the midst of this most recent setback, we had to have a new financial plan. I sat down with Patty and talked about what she wanted to do. The savings was just about gone, assets need to be liquidated. The house went on the market. It’s a beautiful house that means the world to her, but it has to go. There’s no money left. She’d have to find some much less expensive place to live. The first realtor wasn’t very successful. We made a change. It was a good choice. We got a guy who worked his ass off to find someone who had seven figures to drop on a home. And he really went above and beyond too. He often took Patty to her treatments when no one else was available. He helped prep the house for showings. And it looks like he may have found a buyer. That makes me thankful that we found someone with such a good heart and great drive. But as you can probably guess, that’s not how the rest of them saw it. Yep, it was god. “Praise our wonderful lord for bringing these buyers to Patty.” Within a couple days, she found a home in the same school district that she could afford. Again – divine intervention bullshit flooded my inbox. And now, today, with the prognosis as bad as it could be. After being told she has weeks to live, I’m jumping through hoops with the realtor to make sure the sale goes through. He’s cancelled the contract on the new house. And my inbox is silent. No criticism of god. No blame. It must be for the best I suppose. He works in mysterious ways after all.

What really bothered me most was that while talking to her today, she told me she didn’t know what she had done wrong. In her mind, the unanswered prayers and the excruciating pain meant that she must have failed god. At this moment, after being told she has two weeks to live, this is how religion comforts her. It tells her that she must have done something wrong. That she somehow deserved all this pain, this unbearable struggle. And although we didn’t discuss it, I’m sure she’s wondering if god is pissed off enough to do this to her, then maybe he’s pissed off enough to sentence her to an eternity of damnation. You know, because yeah he loves her, but she fell a little short somewhere. What a horrible burden added to an already unbearable load.

So, for all you religious folks out there, I just ask this. Be logical with your religion or be silent. I’m sick of having to be silent so as not to offend ignorant people. How about you people start worrying about offending us logical people? Praise god all you want, but if things go wrong, offer up some blame too. If you contend that prayer works, pray for something worthwhile. Pray that no one ever gets cancer ever again. Pray that there never is another war fought ever. Pray that every sick person is healed. Or at least the ones who believe and are faithful. Don’t they deserve it? Let’s put this prayer to a test. Prove me wrong. Make me eat my words when I tell you it’s a worthless endeavor that does nothing but make you feel better about not making an actual contribution. Otherwise, admit prayer is bullshit and that your god is going to do whatever the hell he wants including put my aunt through a torturous hell on a long road to killing her. I can at least respect the intellectual honesty of that viewpoint.

I mentioned earlier that Patty and I laughed a lot. I’ll remember those laughs, all the good times. The good times far outweighed the bad. But I’ll never get over the conversation we had today. Ever. It’s something that will never go away. I’m going to miss her terribly. I’ll never forget that today I cried. A lot.

pattyandboats

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