When You’re Invisible, You Must Be Loud

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.