Testing, Testing

Kage Baker endured many medical procedures. She was heroic about it – patient, courteous, quiet. Brave.

And it was bravery, because she hated everything to do with medical tests. They were usually weird, often painful, and always embarrassing for her. Even so simple a procedure as a blood sample was a trial for her, because needles scared her and because Kage was a profoundly modest lady. And it’s apparently a law of nature that the medical assistance field is positively littered with people who have all the native manners of barnacles.

Kage was, literally, paper-white. On her, a tan was a hearty ivory, or someplace the freckles ran together.  “My God, you’re pale!” exclaimed dozens of nurses, whose own complexions ranged from good chocolate to maybe 2 shades darker than Kage’s own. “Are you anemic? Are you sure?” How the hell they expected her to tell from the inside I never figured out. But it always embarrassed her, and involved two or three more vials of blood.

“Wow, have you got thick ankles!” Yes – but very thin wrists; and what did either one have to do with treating her bronchitis? “Your hair is amazing – is it natural?” says a total stranger running her hands through Kage’s waist-length red hair – being a nurse doesn’t entitle you to handle a patient like a plush toy. I would watch the shudder run through Kage from her scalp to her toes; as the years went on, I made sure to always accompany her in doctors’ offices, and I was ferocious in stopping this kind of invasive crap.

As I have mentioned a few times before, Kage was an Aspie  (as she and Kimberly referred to it). She had Aspergers Syndrome, which can complicate  encounters as impersonal as sharing an elevator: you can imagine what it’s like in a doctor’s office. I started accompanying her to appointments when we were in our 20’s, and rapidly realized I had to be fierce and willing to speak up in order to keep things bearable for her. Kage had a will of iron and could get through an exam on her own; but why should anyone have to keep such a stiff upper lip that they then collapse in shaking distress when they get home? Why should the cost of a doctor’s visit include stress vomiting? It just should not.

Me, I have no more modesty than a cat. An interest in physiology and years in the theatre  have eroded what little demureness I may have ever had (couldn’t have been much …). I’m the sort of annoying patient who criticizes blood draw techniques and demands to know exactly what they are taking; who insists that the test monitor be turned so I can see it, and wants all the structures identified. I diagnosed my own gallstones and pointed them out to my doctor on the x-ray.

I metamorphosed into a remorseless demon during Kage’s last year of life. Nothing was done unless I understood it and had explained it to her. No one got to handle her roughly, and sometimes not at all – they could assist me in moving her, or watch. I assisted the resident who implanted her IV port – I showed the nurse who did not know how to hook up the IV for internal radiation therapy how the port worked. I removed Kage from the hospital AMA twice, when she couldn’t stand it there one more minute – the second time I had to bathe her first (no one had answered the bell in an hour), and only the necessity of racing for the EXIT kept me from making a scene at the nursing station.

I was not nice. Some of it, of course, was guilt that I hadn’t twigged to what was wrong 6 months earlier and dragged her into a doctor’s office … but there was no way to make up that initial hideous error, and all I could do was protect as she fought for her life. So I did.

Right now, I am waiting for a sleep test. I’ve been diagnosed with sleep apnea, because that is something that happens to people with congestive heart failure. My poor patient sister Kimberly sometimes listens to me breathe at night (or not) and is waiting anxiously for this test to be done and treatment to begin. Breathing is not something that should be indulged in on a sporadic basis, after all.

My test was scheduled for tonight – I’d already packed pretty pajamas, even. This morning it was cancelled, when the Sleep Center suddenly realized they didn’t take my insurance. A horde of questions arise from how they overlooked this – but they were so upset that I didn’t have the heart to yell about it. They’ve kindly re-scheduled me at an alternate facility for May 5th,  though I fear Kimberly will be ritually cursing them the entire 2 weeks until then …

See, this is how things work in this family. You always take along another brain in case yours cannot cope. And there is just no better co-brain than the ones you share with your sisters.

It’s a well-tested fact.