I really like my nephrologist

October 25th, 2012

I really like my nephrologist.

He wears crazy ties, and he’s got a plastic model of a kidney on his desk that somebody glued googley eyes onto.

I was seeing a young fellow today, a nice woman with an Eastern European accent who made the mistake of mentioning how I probably know a lot more about diabetes than she does and how I probably know a lot more of the people at Joslin than she does.

She’s right, but she never should have said that. There was a tone in her voice, a lack of confidence. It’s like running away from a peacock who wants to peck dents into your shins. Your show of weakness invites attack by the strutting bastards.

There’s a lot at stake. They have much to prove in the dance of winning a mate.

When I saw Dr. Robert Stanton, my nephrologist, whom I call Bob, but not to his face, since that just feels wrong, out at the reception desk, I said, loudly,

“Hey! There’s Dr. Robert Stanton!”

But maybe he didn’t hear me. He walked off down the hall to his office.

“HEY!” I said, a little louder. “I guess Dr. Robert Stanton doesn’t want to say hello to Lisa Vaas!”

What a rude thing to do. The poor fellow with whom I was visiting, Dr. Taschi, was staring into her computer screen the whole time, busy checking off things in the insanely complicated software tracking program they use at Joslin.

It’s not like she was asking me something.

But still. You know?

I’m such a peacock.

There was somebody singing gospel in the waiting room at Joslin Clinic today. Her voice filled the room, and the room is big. Patients and nurse practitioners and lab assistants and patient account specialists looked back over their shoulders, paused and looked up over their computer screens, and stopped walking, patient charts in their hands, all of them turning toward the singer, like compass dials gravitating toward true north.

Usually, the waiting room is full of glum people, or frail gray-haired people hanging on to walkers or the arms of their middle-aged children, or obese people with defeated, sagging shoulders, or me, clutching my bike helmet and hoping that people wonder what such a young person is in there for.

“Must be picking up one of her parents,” I imagine they say to each other.

Particularly given that my hairdresser touched up my roots on Tuesday.

I bounce. I affect a bantering, robust tone. I heft my backpack down on a chair. I spring up and say “Hell-O!” when they call my name.

But the truth is, I’ve been going to Joslin for 47 years. I guess I fit in with that crowd in the waiting room better and better with every year that goes by.

Besides. Really. As if they think of me at all. As if anybody thinks of anybody at all, most of the time.

That’s not something you typically hear in this place,” I said to the receptionist as the singer sang about the lord’s love from the bottom depths of her belly. She smiled and nodded.

“Usually you just hear people screaming as they get jabbed,” I said.

“Usually, it’s me screaming the loudest,” I thought.

The receptionist said the singer comes in now and then, and she sings. The singer is a patient.

“You should hire her,” I said.

I like it when medical people talk to me. I like it when Dr. Bob Stanton skips over my records and gets to the heart of the visit, which is typically doing something like pulling up video from the latest Daily Show or running Google searches on gila monster saliva, which, it turns out, increases the body’s sensitivity to insulin.

“Who got it into their head to use gila monster spit for that?” I asked him. “And how do you get saliva from a gila monster? Aren’t they poisonous? Do they kill them? Or do they milk them for spit? How do you milk a gila monster?”

He doesn’t know. I asked Quora, and somebody got snotty and literal and said the medicine was based on an analog: something cooked up in the lab to resemble gila monster spit, as opposed to being real gila monster spit.

“Well, duh,” I said. “I want to know how the first person who did it, did it. As I said in my original query.”

I eventually found the title to a book about it. I haven’t followed up on that one yet.

The point being, I like it that my doctor knows that I’m in good shape. I like it that he doesn’t bother to educate me. I like it that he just runs through the basic stats, does a rote check of my lab results, dismisses the proteins in my urine as being just a lingering effect of scarring from kidney infections I got in my 20s before I was smart, tells me I’m going to live forever, then talks to me, like I’m not a critical case.

I like to put as much distance between myself and the critical cases as possible. It’s like putting distance between myself and death. I’m a peacock with a lot at stake.

I can forgive myself for that. But I don’t forgive myself for being judgmental.

Because here’s the thing: I got diabetes when I was 3 years old.

Until I got into my 20s and at-home blood-sugar testing was invented, and until Joslin doctors nagged me into giving in and puncturing my fingers multiple times a day to test my blood sugar, I didn’t do a good job at being diabetic. I did a terrible job. I ate whatever I wanted, and my blood sugars bounced, and I wound up in emergency rooms.

But still, in spite of the fact that it took me years—decades—to learn enough about diabetes to control it, at least I never had to adjust. I was blessed by getting it at the age of 3. I was blessed by having no habits to break. I was blessed at being free of a sense of entitlement.

Because that’s what tortures the newly diagnosed: the idea that they’re entitled to a life of health. The newly diagnosed feel, it seems, as if there’s something profoundly unjust about having to watch what they eat, or take insulin injections, or prick their fingers. This sense of being unfairly singled out breeds resentment, resistance to effective treatment, and depression, and that depression in turn leads to the state of brittle diabetes: a situation in which the impaired psychological profile prevents the diabetic from mastering his or her disease.

As if any of us are entitled to such a thing as health.

The self-pitying grow depressed, may God and the Buddha bless them.

But the singers sing, through the pain of their blood being drawn into tubes.

They sing, and I’d rather sing with them.

 

 

Are you diseased?

October 23rd, 2012

Am I diseased? What, are you fucking insane? You think you can catch it? You think vials of insulin are going to sprout legs and spring out the refrigerator so they can bite you?

I was staying with a friend in Brooklyn. It was one of those fraught New York apartment situations in which my friend was barely, sullenly tolerated. Gina bundled me off to sit on the bed in her little bedroom every time I came, since our presence in public spaces such as the living room wasn’t welcome.

That’s not paranoia. When we walked in, her two housemates were sprawled on the sofa. They languidly acknowledged our presence but didn’t stir to make room. Yes, hello, fuck you very much. OK. Sitting is the new smoking. Enjoy your perch.

We went upstairs to sit on her bed.

Gina was low in status. As her guest, I was lower.

I was visiting for a few days, so I asked if I might store my insulin in the refrigerator. Gina looked dubious.

“It might get thrown out,” she said.

A full vial of insulin weighs 22 grams, or .8 of an ounce. It’s roughly the size of a Matchbox car, but it balances better on its bottom than would a Matchbox car, thereby taking up less horizontal refrigerator space than would a refrigerated Matchbox car. Thirteen vials can comfortably fit on top of a 15-oz. plastic tub of ricotta cheese in the refrigerator.

That cheese is old. I should really do something with that cheese.

I’ve never thought much about insulin. I probably should have thought much more of it when I was in Thailand for three weeks. It was hot. Insulin doesn’t like hot. But it was fine. In the tropical heat, I sweated out all the sticky sweet bubble tea I was drinking to stave off hypoglycemia, and the afternoon monsoon showers rinsed it all off as my husband, Howard, and I biked around looking for sulfur springs or climbing mountain temple steps.

That was fun. We were counting off the number of steps in our pidgin Thai. Thai people kept pausing to listen, and they’d prompt us with the next number if we forgot what it was.

I probably should have thought to bring extra insulin to give to Howard to carry in his bag. That would have been smart. That would have come in handy if my bag had been stolen. But it didn’t, and the insulin didn’t go bad in the heat, and everything was fine, and there you have it, I never think about insulin.

I started to think about insulin more when the magical angels of serendipity put me in Indianapolis three weeks ago.

I was out in the Midwest to meet a friend of a friend who has Type 2 diabetes but who has managed to ignore it fairly well. Linda ignored it well enough to get neuropathy in her feet and vertigo, which our mutual friend, Tom, believes had been induced by obesity and the pressure it puts on the inner ear’s labyrinth, which controls our sense of balance.

I was there to talk to my dizzy new friend about diabetes. But I was also there because I had broken my foot being too much of a Zumba dance nazi, and my comeuppance was 6 weeks of inertia on a couch. I was depressed, and I needed to get out of the house, and I needed to get off that couch. So much for calling Type 2 diabetics couch potatoes.

I mean, they are. But one day, my bone snapped, and so was I. Ergh.

So, Indianapolis. Linda and Tom were in Bloomington, and I was invited for the weekend to preach whatever low-carbohydrate get-off-your-ass unsympathetic swill I would have the audacity to hurl at a frightened, disabled 68-year-old with vertigo and neuropathy, but being cheap as well as, obviously, an asshole who knows it all, I got a frequent flyer flight from Boston to Indianapolis that arrived on a Wednesday, saving 12,500 miles and convincing myself that Indianapolis must have something interesting to keep me busy for two days.

It sure did. It had the Kurt Vonnegut Memorial Library, and it had an editor living behind a wall of banned books for Banned Books Week. It had neon dancing ladies on Massachusetts Avenue. It had a hookah bar. It had outdoor sculpture and a canal and murals and bike paths and a medical museum that was closed when I got there and a big, free art museum with Japanese tea gardens and the ancestral mansion of Colonel Eli Lilli, founder of Eli Lilly and Company Pharma.

Indianapolis, it turned out, was the home of insulin.

I had thought, when I planned the trip, to visit places where you get pancreases. Stockyards, I thought. Chicago. They used to make insulin from the pancreases of pigs and cattle. That made sense. You have a lot of spare parts left after you kill a whole, big animal.

But that’s not where they got the first insulin. That came from dogs. It came from dogs they sliced open in a dusty lab in Toronto. They tied off the pancreas ducts and gave dogs diabetes. They ran out of money, because the program was run by a Scottish-American who was cheap as a bastard and because the doctor who got this crazy idea in his head of squeezing pancreases for whatever the hell was good in them (it had been tried before) (it had failed) (this Dr. Fred Banting guy didn’t even bother to read about previous attempts before barging in and demanding this and that, his eyes popping out of his head. The Scottish guy gave him a filthy old lab with a leaking floor just to shut him up), so when they ran out of money Banting and his research assistant, Charley Best, stole mongrels.

Those unloved dogs cooperated. They seemed to know, Banting said, that they were sacrificing themselves for something large.

Or maybe they were just dogs. Maybe they just enjoyed any human attention from anybody at all.

They gave the dogs diabetes, and they took their pancreases and macerated them, and then they injected the brown, lumpy fluid back into the dogs, and most of the time the dogs just got infected on the dusty operating table and died, and some of the time they died from being injected with chunks of pancreas, and most of the diabetic dogs died a slow death of listless starvation, as happens when you don’t have insulin.

Those sweet fucking dogs. Following that unmarried, bug-eyed, unlovable Banting around the filthy lab as if he were their anointed savior. Stupid, faithful, stupid, faithful, blessed.

He wasn’t their savior. He was my savior. Mine, and other diabetics.

Discovering it was hard. Purifying it was hard. Getting it in quantity was hard. Eli Lilly Pharma figured that one out.

And here I was, in Indianapolis, home of Eli Lilly and Company Pharma, not having a clue before I came that it was here.

They don’t give public tours. I begged. They said yes, come, but first read this book about the discovery of insulin, called Breakthrough.

I never thought much about insulin. It was always here. It was always made by Eli Lilly. Those Matchbox-sized vials, they save my life, every minute of every day.

These vials of insulin would be potentially unsafe in this shared Brooklyn apartment, Gina told me. They might be thrown out, like a moldy lump of cheese.

That’s not passive aggressive, that’s passive homicidal. What kind of person would throw out life-saving drugs?

I wound up storing the insulin in the refrigerator. I was in the hall at one point and heard the housemates talking to one of their guests in front of the refrigerator.

“What’s this?” their friend said.

“That’s Gina’s guest’s. It’s insulin,” one of the housemates said.

“Ew,” she replied.

Type 1 is, in fact, now considered a disease. It was once deemed a disability, given that it was believed that after the body attacked itself in the autoimmunity that causes Type 1 diabetes, the organ was turned into a dead lump: contributing little, saying naught, just taking up space. Since then, they’ve found that the autoimmune response is ongoing. That loyal lump is alive, still trying to pump out insulin, getting attacked every time it does.

One day, they will find a vaccine to stop the autoimmune attack. It will target only those agents that attack the pancreas, nothing more. Maybe it will be a 90-year-old tuberculosis vaccine, as is being investigated in Boston. Maybe not. But it will be something.

Until then, yes, I am diseased.

If I could, I would infect all of you, those appalled and those indifferent as I was. The infection would render itself up as the word that comes to my mind now when I think of those dogs, and of those precious vials of insulin:

Allelujah.