She Was Dancing All That Time

Continuing the translation of “articles” to modern blog entries… Article 31 from February 7, 2004.


SO Mom contracts pneumonia early in January, and life goes on hold.

I’ve learned a lot in the last month: “pneumonia” is not so much a disease caused by an agent, like SARS or Alzheimers, as it is a physical condition: buildup of fluid in the lungs which impedes the ability to breathe – often progressively, sometimes fast. Sometimes this condition is caused by a virus, sometimes by a bacteria, and sometimes just by inflammation; but for smokers, people over 45, or those unlucky enough to be both, it can be VERY difficult to fight off.

And then there are the complications. Forget bedsores and rashes, arms scarred from IVs and throats raw from intubation, or even the simple indignity of a nose dried out by the omnipresent oxygen tube; the real fun is still to come.

Pleurisy, another “process”, arises when fluid collects between the lung and the chest wall, making what little breath you CAN draw an agony; it becomes worse when the pneumonia infection leaks in, filling the space with pus. You have to drain that out surgically, in a procedure called a VAT (Video Assisted Thoroscopy) which is far better than cracking the chest wall open but still leaves the patient with tubes draining fluid slowly, slowly, from a hole in their side.

Which opens the door to staph.

Methicillin-resistant staphylococcus aurorae — MRSA or, more poetically, drug-resistant flesh-eating bacteria. A third of us have *some* strain of staph colonizing our bodies peacfully at any given time; but given the right conditions, staph can turn nasty, blooming into an itchy red rash which is ripe to infect others or, worse, slip into a healing wound to cause blood poisoning (septicemia or bacteremia).

But a bacterial infection is not an annoying neighbor named Ted or his ill-behaved dog Spot, to be easily cured by a restraining order or a stiff whack with a newspaper. An infection is an entire *population* of a particular type of bacteria, millions of them, breeding and reproducing according to Darwin’s law of evolution by natural selection.

In the hospital environment, Darwin’s law rewards the toughest individual bugs — the ones who can colonize and survive on the insides of IV tubes or cling tenaciously to an ill-washed hand, the ones that inflame your body with infectious sores so they can spread like wildfire — and the ones who can surivive the typical spectrum of antibiotics that the hospitals typically use.

Hence MRSA — a description of a particularly nasty evolution of staph, typical to populations of individuals in close contact like prisoners, drug addicts, high school wrestlers … and hospitals, where it colonizes health workers and attacks vulnerable patients.

Doctors are aware of this now. They’re careful with the antibiotics they *do* have, using only the ones they need. And they bring in the big guns only rarely in an attempt to keep knowledge of their arsenal from the mindless gene-memories of their bacterial foes. And they try to alert their patients — use all your antibiotics, as prescribed, so that your body isn’t left with a tiny residual population of the most resistant bugs.

Oh, and they wash their hands. A lot.

Staph still slips through, of course; but they stop it, most of the time. But you can’t *count* on them to stop it, unless you or your loved ones take charge of your care. The doctors care about you — really, they do, even the ones you wonder about — but they have ten, twenty, fifty or a hundred patients to consider, and if they see something unusual — a fever, restlessness, unexpected difficulty breathing — that could … just … quite … fit into the normal progress of a disease, they’ll assume the treatment is working and will stay the course.

And of course they have to contend with a vast number of fools, both patients and family, where by fools I mean those people who don’t really want to know what’s going on and don’t really want responsibility for their own health care decisions. So even if you do ask, the doctor is likely to tell you “she’s getting better”.

Only you can know your loved one’s health condition. Only you can see that this fever IS unusual, see that this restlessness IS getting worse, see that she is visibily NOT improving — and it is up to you and your relatives to read up on the condition; to assess that more needs to be done; and to send in your very own IFFM (Infinitely Formidable Family Matriarch, in our family my father’s younger sister) to bust the doctor’s heads and get them to call in the specialists your loved one needs.

So your mother’s getting better. And you do what you can. You HAVE to do for her, but you CAN’T do to much. If you DO too much, you’re likely to wind up in the hospital yourself, puking your guts out because of the stress, doing no-one any good. So you need to get help. But you can’t do everything — not even you and her cousin and the IFFM and all the aunts, uncles, cousins, nieces and nephews can do everything. Even when you have to turn to outside help, they can’t do everything.

You can hire a sitter to stay the night with her so she doesn’t pull out her IVs, leaving you to go get a good night’s sleep, but then the sky can fall and the roads turn to deadly sheets of ice and you’re left with the realization you, yes you, are the only one who can stay to help her. But even then, sooner or later, you WILL have to leave her, even if only for a little while, to put food in your belly. And when the roads clear, you’ll have to leave her longer — or you’ll have no job to go back to, and no food to put in your belly even if you want to.

But somehow it all gets done. Someone’s there to stay with her almost every day, to the point that she sometimes asks the nurse to put up a NO VISITORS sign. But even then, you can’t do everything. She will say and do things she would never otherwise do, demanding the impossible, the contradictory, the unbelievable. Her loving friends will leave in tears, distraught because she says they’re not doing enough for her … after they’ve just stayed the whole night watching her to make sure she didn’t pull her IVs out in her sleep.

But it does no good to get upset. Stand up and take it calmly. Comfort the caregivers: remind them that pneumonia and pleurisy and surgery and septicemia are wearing her down, and making her say and do the impossible, the contradictory, the unbelievable. When she recovers, she will be back to normal.

In fact, when she recovers, if she’s lucky, she’ll remember none of it. Don’t be upset when she asks if it’s the first time that you’ve been to see her since she’s been sick, even if you’ve already stayed three weeks at her side. She will get better. She’ll recover from the disease and the drugs and the surgery and tell you about how she remembered going to all those parties.

The … parties, you ask? Oh, yes, she says. Just a few weeks back — when YOU remember a tube stuck down her throat and her tongue dried to sandpaper and her arms restrained to the side of the bed because she kept trying to pull all the tubes out in her sleep — SHE actually came home from the hospital.

While all of YOU waited, breathless, in the ICU waiting room, not knowing whether she was going to live or going to die, SHE had already *gone* home. And she *partied*. She went to her birthday party (six months away) and to her sister-in-law’s birthday party (also six months away) and to a homecoming party thrown by her brother in law — but when she left the party, she left her presents, and could you call the restaurant and see if the presents were still in the lost and found.

You’ll tell her what really happened, and tell her how worried you were; and she’ll
roll her eyes at herself and tell you how she thought she had just gotten back into the hospital, but how she knew that it was just the cocktail of drugs they had her on that was messing with her brain and if she could just get those out of her system, then she’d REALLY get better.

Then the pain and fog will lift and, energized, she’ll tell you to gather her bills, to pay her taxes, and to check out a probate issue that needs to be settled — and at once you can see she’s still sharp as a tack.

And you’ll smile. Because you can see she’s coming back. Because you know she’s going to be OK. But most of all, you’ll smile because you now know that all that time she was writhing in the ICU, she really wasn’t in pain. She was out partying.

And she was dancing all that time.