Kage Baker had, for most of her life, a quiet sort of background faith that things would work out all right. She didn’t fret about enormous problems too much; she tried to keep her worrying down to a level where she felt she actually had a chance of effecting outcomes. Or, conversely, where the problem was so huge that she herself had as much chance of altering things as, say, the background radiation of the Big Bang; or the chance production of the Higgs boson.
She carefully worked out where the new shoreline would be, for instance, in the event of our local ocean level rising. When you live two blocks from the beach, I guess that makes some sense … anyway, she figured that any ocean rise up to 3 feet would still let us enjoy shore-front property without having to resort to pontoons. I was never really sure about her math (Kage was basically enumerate) but it eased her mind; that was fine with me.
On the other hand … she never have a moment’s thought to, nor a tinker’s dam about, her own long term health. That may have been sort of sensible: when you simply cannot get medical insurance, the best way to maintain at least mental health is not to worry much. But when she started bleeding a year after she reached menopause – when the bleeding got gradually worse and worse – I wish she had told me. Sooner. At some point before the afternoon she confessed that something was probably really wrong, and did I think she ought to see a doctor or just throw in the towel?
I hit the ceiling and dragged her to a doctor. However, despite her determination; despite one dedicated doctor and a skilled (if uncaring) surgeon; despite a couple of small miracles: she was dead inside a year of that first revelation to me. Part of it, yes, was because her cancer moved fast and she had moved slowly. But part of it was because Kage was poor; and thus, of first priority to no one in the medical industry.
Her treatment was delayed, her records were misplaced, when her first assigned surgeon went on vacation her surgery was not re-assigned but cancelled, and there was no financial aid available until she was destitute. Which happened pretty quickly – just not quickly enough.
I had a heart attack a few months before Kage was diagnosed with a rare, intransigent uterine cancer. I took three weeks off work, changed some vital habits, paid attention to my doctors and took my meds. I got a bit better. But then Kage got sick, and needed increasing amounts of care. It placed rather a bit of strain on me: although it helped somewhat when my employer had to close their offices and laid me off – I had more time to take care of Kage.
And Kage needed more and more care; and she got sicker pretty quickly; and then she died. I had to close up our house and move. Then I spent the next 6 months running back and forth across the US on book business for Kage; collecting awards – which was wonderful – and getting more and more exhausted. Which was not. Nor was it very smart. Caring for Kage in her extremity pretty much broke my health. I had another heart attack, got another stent in my chest, and discovered I had developed congestive heart failure.
Kage would have been furious with me. But heck – I didn’t ignore anything willfully. I honestly didn’t notice, until that November afternoon I fell over. Hearts don’t really break!
Since then, I’ve been being a pretty good girl. But the time has come for me to see if Social Security can be of any use to me – a few years early, but not all that many, really. I’ve been contributing for 40 years now; and I doubt I will trouble the system all that long – I am not realistically looking forward to the Presidential centenary certificate – because CHF is not, you know, curable. Thus I have leaped into the roiling sea of paperwork.
I picked a hell of a lousy time, of course. But they are, in their slowly grinding way, responding. Today I had an appointment for a physical, to see if I am really sick enough to qualify for any help. They’ll be deciding shortly whether or not I am disabled. I’ll be really intrigued to see whether I am or not – because I sure feel disabled. One of the reasons I sit here and write is because it’s one of the very few activities that doesn’t provoke faintness, chest pain and an over-dependence on oral explosives. That seems disabling to me.
On the other hand, Kage argued with the Feds throughout the entire, tragically brief, course of her mortal illness. They sent the letter deciding she was, yes, disabled, the very week she died. It took them another couple of months to cope with the filing changes necessitated by her inconveniently dying just as they’d declared her case active …
On the other other hand, I’ve learned to be rather noisy about this crap. I don’t sit and wait meekly. I learned to scream and leap up and down during Kage’s illness (it’s the only way I got her surgery re-scheduled), and no matter how short of breath I am, I can still howl with outrage. I have a lot of pent up resentment and anger – might as well use it for something.
So I battle on. I can’t afford to ignore this; I think I need more time than my body will give me without help. I have things to write, things to say, messages from Kage I promised to deliver. Our moron overlords dropped the ball for Kage. They owe her, and they owe me for her. I’m not even slightly meek.
I may an Invisible Woman, but I’m a loud one. I mean to show up on something.
Kathleen, Kage and the Company 
“And so the devil created HMO’s” is the punchline to a very long joke about God and the devil creating good and bad things, and it always make me laugh – cause otherwise I’d cry.
Sounds like you’re doing exactly the right thing by standing up and shouting – don’t let the system get you down, your fans are rooting for you!
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Thanks, Kara. If there’s one thing I’m good at, it’s talking loudly and at extreme length!
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This breaks my heart, again.
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No, no, Tom! Cheer me on! Never give up, never surrender!
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Shout loudly, stomp your feet, make yourself felt if you can’t be heard. And then grab them by the ear, pull them half-over and speak loudly and clearly straight into their brains. Make them help you stick around for a whole lot longer.
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I wish I could send you some physical strength, luck, or additional loudness. Or maybe a miracle.
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Go Kate! Go go GO!!! Make them sorry their grandparents were born! Praying for you.
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When in doubt, channel Welsh Corgis! Dog of your people! Biting is oft times an excellent companion to loud barking.
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Thank you, everyone – I feel much more empowered! Really, that helps. It’s just one more bureaucracy to surmount, you know? Part of the heritage of being an American! Part of the business of making sure everyone gets heard is the necessity of letting everyone also have a voice … and some of them are stupid paper-pushers.
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As a student I worked two summers in the financial aid office of a private college. Summers were when the very dedicated, overworked financial aid officer did her best to distribute a finite number of scholarships and grants. I can’t imagine a more stressful job. Basically, she sorted out who would be able to afford to go back to school that fall. It was an utterly eye-opening experience for me, the life-lesson of which was pretty much: scream your head off (and fill out government paperwork promptly)! The early bird gets the worm; the early, loud, persistent worm who phones again and again and makes the student worker leave multiple messages for her boss gets the Pell Grant for her kid. Another eye-opener was the day I was sent accidentally found out that the final tuition bills for a student who had lost her funding source, without which she would have had no option but to return home to Africa without completing her degree, were quietly being mailed to the financial aid officer’s own home address for payment. It made me how many really good people might be hidden out there doing amazing things completely under the radar. It’s my wish for you that you’ll encounter some of them as you soldier on.
Be well. I look forward to your stories.
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While it is currently true that “CHF is not, you know, curable” I’d observe that some forms are damn well TREATABLE. My father’s CHF is directly related to his sodium intake…which causes rapid fluid retention and undue labor on the heart. He’ll whine that he loves certain salty foods (like takeout Chinese or salted pretzels) which I absolutely refuse to provide him (since I do most of the shopping) and am keeping him (mostly) on the 1000mg of sodium per day that his doctor has said he should consume, because I equally do most of the cooking and refuse to use salt in cooking or have any on the table. Sure he sometimes sneaks out for food he shouldn’t…..but not often enough to put him into CHF again. The trade off is that I am careful to try to cook for maximum flavor with seasonings, salt-free stocks & poaching liquids, etc.
Check w/ your doctor if there are obvious triggers for your CHF…and if there are, be sensible and avoid them!
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Very wise advice, Mark; and I am endeavouring to do just that. Alas, the more obvious ones don’t seem to apply – I’m not salt-sensitive, and even if I were, I don’t use much: I’ve been regulating that for years. I have high blood pressure and it is under control – as much as it can be. I’ve had it since early adolescence, and it’s due mostly to a wonky kidney, which I have been unable to convince any surgeon to just remove. Damn thing still mostly works … what I do have are absurdly narrow blood vessels and a tired heart – c’est la vie, mine anyway. But things have improved, and will improve further yet – when my body finds its new plateau of normalcy. In the meantime, I take my meds and keep my feet up lest they swell like Gummi bears in an overnight glass of warm water.
Kathleen kbco.wordpress.com
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As the Imperial Court chorus sings to The Emperor in ‘Turandot,’ “May you live 10,000 years!” (which we know is courtiers’ hyperbole for, “Please don’t send me on an embassy to Peoria!”) – or at least as long as you feel like it.
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