Sometimes it's funny as hell, and sometimes it's not. Life, I mean. Life with serious illnesses and big families, and old friends who are every bit as flawed as they are cherished.
I've been lurking at DKosw without cease since my earlier cancer diaries, though I have not often had the stamina to write. But I wrote an email letter to some good friends, lately, and when I got the impusle to share the letter with you, I found myself explaining its context, which grew into a diary. Besides, I think it's worth letting people like nyceve know that her healthcare and insurance diaries hit me right where I live, and they mean much to me; it's worth letting you know that your Top Comments keep me sane, that the Billary/'Bama pie fights were not always tedious, and that the recent MeteorBlades retrospective was just awesome. How'my doin? Jump.
For the letter to my friends, it really helps to know a bit of backstory on someone I considered a dear friend.
My friend K, whom I hadn't seen in quite a few years, had much to do with one of the really Big Name hedge funds, and did about as well as you'd expect, which is very (ahem...Very) well, indeed. I contacted K when I first found out I had cancer, pretty much just to say goodbye. But K convinced me to give a shot at coming to an absolutely top-rate cancer hospital, rather than the not-so-hot hospital available to the rural community in which I lived. Turns out, K is on the Board of said top-rated facility, and has donated quite a bit of h-fund largesse to them over the years, so his influence not only sped me into the hospital there, but secured me the Devon cream of the crop of oncologists.
In the course of our first-conversation-in-years, I told K -- just in a matter of fact kind of catching up kind of way -- about some of the challenges I've faced since we last saw each other -- that seven years ago, I had a terrible mental breakdown that completely disabled me, and then, just as I was beginning to recover, a year ago was diagnosed with small-cell lung cancer, which has also seriously disabled me. Those challenges have been to my health and therefore, they've certainly been financial -- because in America, if you've been earning even a really decent middle-class, low six-figure salary like I was, but then you get long-term sick, you will get long-term poor as well. Eventually, you will spend down all that you have, then go on public assistance, or permanent disability (as I did), and either way, you will live on payments pegged to federal poverty guidelines that have not changed since 1964, or thereabouts. You will have enough to eke by, month to month, and that's about it. You will either throw a pity party about it or, as I've said before, cry some, and then get snarky, find your spine and your sense of humor. Whatever happens, it's a marathon test of character, of your ability to adapt, to be clever and resourceful, and above all, of your capacity for spiritual growth. If by the end of it you don't know what "enough is as good as a feast," means, you need to keep praying until you do. But that's just by the way...
K heard my fill-in-the-years and heard about my plan to cash out the tiny retirement fund I'd built up, in order to pay for my medical bills, and he made an extraordinary offer. He didn't want me to cash out my retirement; instead, he, together with a mutual friend who has also Done Well, would pay for my medical bills in excess of my Medicare, and would help pay for my housing for a few years ... until I was really out of the woods (or dead, since the mortality rate for my kind of cancer is 80% at two years, and a whopping 96% at five years...) K and his friend were so expansive ... "I mean, if you need a million dollars, well, we can't do that," K and his friend said during a lovely car ride one morning. "But if you need, say, $80,000 over the next four or five years -- that's no problem!"
Honestly, their offer put new life into me, and gave me such hope. I've asked very little of people since this whole ordeal began, seven years ago; most people had no idea this was happening at all, and I didn't -- and wouldn't -- have asked K for anything, either. I accepted his offer, and I was as grateful for it as it's possible to be. And let me tell you: the very first prescription they paid for cost over $1,400, for three pills, and that was the cost after Medicare picked up the bulk of the price. Fourteen hundred dollars is close to every penny I was getting on disability -- if I'd had to pay for it myself, I literally wouldn't have had enough left over to feed myself, much less pay the cost of anything but a flophouse to sleep in.
My brother paid for about a week at a La Quinta Inn which was very close to my daily chemo, and then K took over the payments for several weeks, until I could find a place to live. The folks at La Quinta couldn't have been nicer or more generous; they charged about $75 or $80 bucks a night, which was rock bottom for a hotel in their class, in that neighborhood.
Eventually, I found a summer house-sit for six weeks, for a vacationing couple -- university professors who kindly charged me only my own utilities to stay at their beautiful home; I didn't need any help to pay those bills. After that, I moved into the local Ronald McDonald House, which charged $15 per day, and which I could afford on my own.
But after a few heady days and wonderful visits, K began to change. He began to get visibly annoyed in my presence, and eventually, accused me several times of trying to make him feel guilty. I was undergoing chemo and radiation at the same time, and I had had to have an emergency (total) hysterectomy, the immediate aftermath of which was that I crashed during the surgery, went into critical condition, and nearly died then and there. I was sick as a dog, so tired, just so ill, and K decided, somehow, that this was all about him, not me.
I got a bunch of medical bills that totalled about $1,150 and, reluctantly in view of his recent tetchiness, I brought them to his house to be paid. K was clipped and sharp with me. He insisted that I work up a budget -- something that I'd already done, and had strictly lived by, for years. But to assure him that I wasn't ripping him off in some way, I went through my budget with him, line by line. At the end of the month, after my fixed expenses (food, gas, car insurance, medical co-pays, utilites, my share of the farm property taxes and property insurance), I usually have about $50.00 left -- a pittance by any measure, and one that I'm used to saving reflexively, since that has to cover everything from family Christmas gifts, to new brakes for the car, to my own clothing purchases at the Salvation Army, or Goodwill, or eBay. I wasn't trying to make him feel guilty -- that's just the way things were, with me.
A scant month later, Ronald McDonald House asked me to begin looking in earnest for my own digs; their priority is housing children and their families, and come the beginning of September, they'd need all the rooms they had for an influx of kids. I looked as hard as my stamina would allow, and chose a two-bedroom duplex that cost $1,000/mo. I was determined that if I only had a little while to live (and who, after all, knows?), I wanted a place where a friend could visit, a really decent place -- not luxury, mind, but nice. I'd told K when he'd made the initial offer that I could afford what I'd been paying for housing at the farm, which was half that -- so his offer was to pay the balance every month for, as I've said, a few years.
Only he didn't. He reneged. He just plain... reneged. . Sigh I telephoned him at his European summer home, where he'd just gone to meet his family, who'd gone ahead of him, for a vacation. His wife -- a stay-at-home, milk-and-cookies mom, groused a bit because -- K having accidentally transposed two digits of his Euro landline number when he'd given it to me -- I had to call his wife's cell phone to reach him; she complained that it was costing her a dollar a minute of her cell useage. I got the correct landlne number, and called back, at my expense.
I asked him for $2,000 to put down for the first month's rent and security deposit on the apartment I'd found, and K immediately picked a fight with me, accusing me of lacking financial discipline -- (this of a woman who has NO debt, NEVER uses credit of any kind, and has $50 to burn after I put a simple dinner on the table and gas in the car.) He asked me why I couldn't wait the 10 days until the first of the month to ask him to put down the security deposit et al., and when I said that I couldn't expect the landlord to hold the apartment without it, he told me, icily, that he'd help just this one last time, and then, no more.
I thanked him. I thanked him honestly for all he had done. I thanked him meaning it -- as far as I'm concerned, I wouldn't be alive if not for him -- and then said that I couldn't possibly accept, and I meant that, too. I said goodbye as clearly as I could, considering the lump in my throat, and hung up. Then I walked out of Ronald McDonald's truly quaint, old-fashioned telephone booth, and collapsed onto the floor. The director came and literally lifted me off the carpet, and then she sat with me and let me just cry, and cry, and cry.
I met the landlord, and gave her the $2,000 from my dwindling account -- those increments of $50 saved over time, plus some my sister lent me, and my end-of-the-month disability check. I rented a U-Haul and planned the couple-hundred mile drive upstate to get my things. Two days before I left, I was admitted again to the hospital. The radiation had burned my esophogus, and I was coughing up blood. I was so scared. So scared. I stayed overnight, fretting; after hours spent in the ER, the bleeding had long since stopped, and I just wanted out, while they just wanted to be careful.
I made the long drive, and when I got to my storage unit, I tried to load the U-Haul myself, and couldn't. Just...couldn't. I paid a complete stranger whom I met at the checkout line at a dollar store, $100 to load the U-Haul for me. I went back to my now mostly-empty house up there, and slept on a couch. Late August upstate, with all the blankets in storage -- it was a cold night. I slept like the dead, I was so exhausted.
I got back and paid two of the nicest men I'll ever meet, a couple of hundred dollars each to hump my stuff upstairs to my apartment, and to haul my bed up over the wall of the second-story loft space, into place. I went back to Ronald McDonald House to pick up the last of my things and took, without asking, a can of yams from the pantry. A little less than a year later, and I still haven't touched it -- I can no more explain why I took those yams than I can explain Stephen Hawkings' A Brief History of Time.
And that was the last of my money, for the month. I had just enough left to buy a one-pound bag of Goya Red Beans. I did what I should have done all along, which was cash out my retirement account. It takes thirty days for the government to disburse the money, so I asked my brother for a "bridge" loan, just to tide me over till it came. He had his wife call me, and tell me 'no.' She said he felt he'd done enough...
I had the foresight to divide the beans; I made a thin soup with half of them, and then when it ran out before my retirement check came, I made another thin soup with the other half. Fortunately, the check came in 15 days, not 30, and I immediately celebrated by buying a bag of rice ... no more beans without rice! You'd have thought I'd have bought out the whole store but, in fact, my nausea was still such that I had to eat carefully -- mostly steamed vegetables, scrambled eggs, and for some reason, unagi rolls went down quite nicely.
The government takes 20% of an early retirement withdrawal, right off the top; you're expected to pay another 10% tax penalty at tax time. Medicare pays more or less 80% of my doctor's bills, and my Medicare Part D keeps my prescriptions low (although one of them still costs over $100 a month). I take 12 different medicines, so the Rxs still really add up every month. But without Medicare, I don't what I'd do. And the fact is, cancer care is expensive, surgery is expensive, and critical care is expensive. Twenty percent of $100,000 odd is still a hunk of money, for me, and my little retirement stash has gone as far as it can go.
I am a devout Catholic, those yams notwithstanding, and I take very seriously the few things Christ asks us to to; be charitable no matter what your station in life, be gentle, forgive. You have no idea the struggle with forgiving K; it's hard when the hardships of that kind of betrayal are so acute, and so immediate, so on-going. But I did it. He is forgiven. If I saw him tomorrow, I'd give him what I had.
So. That's the context of my email to my friends. Now, the email itself:
Hello, my Richmond dear ones!
I'm not sure how to put this tactfully, so I'll just be blunt:
I'd really, really like to come to Richmond for a bit of an extended visit ...my friend from the old Office, R, has invited me to spend some weeks with her, and I'm jumping at the chance to see her and see you all. Problem is, I'm also really, really running out of money -- so much so, that even the expense of round-trip gas and overnight stays at a motel (as I don't have the stamina for a single-stage drive from my place to Richmond) is more than I have available to me. I can still pay my rent/bills, but I no longer have money for extras.
So I'm hoping my Richmond friends will chip in and put together a "Saaaayyy ...Let's get Four down here" fund for me. (I am not asking R to help because she only makes a secretary's salary, and she'll be pretty much footing all the bills for my staying there -- meals, extra electricity, etc.)
I'm hoping you're all so thrilled at the prospect of seeing me in person, that you'll overlook how conventionally tacky this request really is. But I'm also hoping that you'll understand the extent to which, over the past seven years, I've had to let go of so very many of my luxuries; of these, no luxury has been more painful to let go of, than the luxury of being the totally -- and pridefully -- self-sufficient, 'don't-worry-I'll-get-the-check', 'I-don't-need-your-help', 'I-can-stand-on-my-own-two-feet' woman I used to be. That woman is gone, and she's never coming back; the one thing I've figured out is, no matter what I'm able to do, the ability to do it comes from God. There's nothing like not being able to take off your own clothes without exhaustion, to let you know who's really in charge.
Speaking of which, I might as well tell you that it can be a bit of a fearsome thing for me to meet old, really beloved friends as the new person I am. That thing with K broke my heart; his unwillingness to have a poor friend, broke my heart. It did not, however, break my spirit, or I'd never be able to ask you guys for help now. I know you will think what I'm about to say is utterly unnecessary, and perhaps even insulting; but what I'm writing is far more about my fears and insecurities, than your characters and moral fibre.....
Just so you're clear, and just so you can get a grip before you answer and before I come, you might as well figure out something about yourselves right now -- something that K neglected to ask himself: You are honestly either capable of maintaining a friendship with a really poor person, or you're not. You can either be friends with a really sweet, physically weak, somewhat funny-looking woman (my hair is thin with bald patches, and my skin is a bit of a mess...) or you can't.
To me, that means -- more than anything else -- that we have to remain equals, because there can only be real friendship between equals. That means you have to be able to look me straight in the eye and tell me you're going out to have fun at some place that I can't afford to go, and you have to trust in my equanimity in the face of it. You have to come back and tell me the details of your great time, and trust that I'll be as happy for you as I was back when. You have to let me go shopping with you from time to time, and stand there flipping through racks while I buy nothing -- and you have to go ahead and buy something for yourself that is frivolous, beautiful, too expensive, and utterly without redeeming value except that you saw it, loved it, and had to have it.
You have to either pick up the tab for something, or not, just as you like... but without guilt if you don't, and without expecting the extravagant (or worse, obsequious) gratitude that tab-picker-uppers can sometimes expect, if you do. You have to know that I never let people call the tunes just because they've paid: I'm not the damned piper -- I'm just regular ol', new Four.
And finally, you have to know that I've forgiven K, and that I will love him always. I haven't spoken and probably won't speak to him again, but that is entirely his choice, not mine. I haven't ever, ever let money define a friendship. Nothing you can say or do will change that, or change one whit how I feel about you, just as there was nothing K could say or do to change that. We do what we do because of who we are, not because of who the other person is.
All this is actually easier said than done, and you have to know that, too. When you really love someone, as I suspect the four of you love me, sometimes the hardest thing to do is to be Mary or John and just hang out at the foot of the cross and watch someone bear something that you can't help to shoulder -- and you have to trust that your mere presence ...your sheer fidelity ...is the miracle, is the saving gesture, is the help they need. Seeming helplessness in the face of someone else's problems can float all sorts of issues to the surface. If you think or pray about helplessness, you come to realize how much frustration it can engender, or how much eventual guilt and then annoyance and then rejection it can prompt. These are issues I've had to face over and over and over again, with family, with friends, in myself.
Am I ever jealous of them? You bet. Am I ever resentful that they've chosen to go to Europe or put in a new patio instead of of helping me in some financial way? Damned right. I walked out on Christmas day, this year, because I couldn't stand to see my gathered family open gift after gift after gift, while I held the one gift I got and felt like shit. But those are my issues. Those are the subject of my prayers and spiritual exercises, because those are the flaws that require my spiritual growth. You'll have your own to deal with, and all I can promise is that I will stand at the foot of your crosses as best I can.
Hard as it has been and hard as it is, I wouldn't trade this experience -- not the breakdown, not the cancer, not the getting fired from a $6.00 an hour job, not the bald head and bad skin and throwing up in public and having kids stare and having people look at me funny because I have a handicap car sticker when I don't look handicapped, and having to hire somebody to wash my dirty drawers and make up my bed because I don't have the strength to do it myself -- I wouldn't trade this for any fortune on earth.
I have to say that I kinda take seriously that whole 'Jesus-as-spouse' thing, and I have to say that most days, it seems like Jesus just reads the newspaper and steadily ignores me while I'm trying to have a pleasant conversation, or he turns on the football game the minute I say, "Honey, we have to talk." Nevertheless, the fact is that day after day, hour after hour, minute after minute, even though he retreats behind the sports pages or turns the volume up on the ballgame, Jesus has been right there, right in front of me, and he never leaves the House. That, to me, has been worth everything. Everything.
-xoxo, Four