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.

 

The Saddest Tootsie Pop Ever

January 4th, 2011

I was a little sad that my therapist wasn’t moved by a photo of my lollipop, the saddest Tootsie Pop ever. She wanted instead to talk about my dad. She wanted me to tell her how scary it was that he yelled at me for no good reason when I was a little kid. You must have been scared, she said. You must have blamed yourself, she said. You must have internalized the screaming, she said. That dynamic surely must still be playing out in my skull, she said.

It was hard to focus on what she was talking about. My skull and I were floating on a hypoglycemic fuzz cloud, overcome by affection for my snacks.

I had wafted into therapy after having sat at a table in the coffee shop for what felt like a very long time. As I sat in the coffee shop, picking shreds of glued-on wrapper off one particular Tootsie Pop, it struck me that it was the saddest member of its clan. I realized that I had been picking at its wrapper for quite awhile, ignoring the fresh, crispy cellophane-clad organic lollipops arrayed on the coffee shop table beyond, any of which would have been easy to get out of its wrapper. The ingestion of any of the easily attained lollipops could have promptly pulled me back down from this cumulonimbus state by increasing my blood sugar and thus feeding my glucose-starved brain.

The brain doesn’t work well without glucose. The central nervous system—the brain and spinal cord—is unique in being the only organ that lacks the capability to store glucose. Whatever the brain needs, food-wise, jet fuel-wise, make-me-think-thoughts-and-process-language-wise, had better be there ready to soak up from the blood, or you’re going to be as stupid as a rock. You’re going to get to the counter at a deli and somebody in a white cardboard hat is going to ask you what you want and you’re just going to laugh at their hat and fall in love with them, overwhelmed with compassion for those who are forced to wear white cardboard hats. You’ll stare at all the beautiful containers of greasy orange and white and brown lumps and globules and fall in love with the luscious glowing blobs as if somebody had finally adjusted the light dimmer in the gallery’s back room and now the photorealistic painting of a crumpled brown paper bag was leaping out at you with shadow and crease and depth and breadth and soul. Somewhere inside those clear containers of food is the key to unleashing you from this rapture, but the ability to discern where has evaporated, and, truth be told, who would choose to go?

The who that chooses to leave this rapture is the tiniest remaining shred of cognition, which sees through this cloud to identify its true nature: The preamble to loss of consciousness, seizures, permanent brain damage and if things get particularly dire, death.

It’s that remaining tatter of cognition that makes you want, desperately, to say to the white paper hat person something more intelligible than just, me, give, that, maybe, or that, or, oh, yes, but, perhaps, that, and you’ll laugh at your own garbled situation, and once in a thousand times maybe whoever you’re talking to will maybe figure out you’re diabetic, but then they’ll get all their own brain’s messages scrambled, and so they’ll try to give you Diet Coke, thinking, Well, she’s diabetic, so she can’t have sugar, right?

You’ll shake your fuzzy head, because even a stupid rock like you knows that won’t help. There’s something in your DNA that knows that fake sugar isn’t real sugar. But who can blame the white paper hat people? It’s not their fault. It’s all confusing. People keep trying to be helpful, to share cures, such as the guy who wanted to date me and who was very proud of developing a diabetic diet of raw vegetables churned up in a blender.

It cures diabetics, he said.

I tried to be polite.

Yes, that’s marvelous, I said. You can indeed cure that kind of diabetes with a sewage spill of raw vegetables, that Type 2 type of diabetes, but no, not this kind of diabetes, this Type 1 kind being more of a professional-level diabetes. The kind where your pancreas has gone on strike, isn’t making any insulin, refuses to be coaxed into making insulin by a vat of raw vegetables. Less of a dilettante’s diabetes. One hates to be snobbish, but, well, there you have it. It’s not the couch-potato kind of diabetes; it’s the other kind.

None of this is helping. All of these words. You’re still in the deli with the Diet Coke white paper hat people. You need sugar, but people want words. The therapist wants words because that’s the only currency the language-adoring economy of therapy recognizes. The white Diet paper people hats hold your salvation hostage until you say some magic words, something perhaps to do with potato salad or juice but perhaps not egg salad or chocolate bars, though all of these things are staring back at you, and behind door number 1 or door number 2 could be the perfect, carbohydrate-appropriate snack, unfettered by the fat that slows sugar absorption, made of nothing but the slickness of digestive speed. Of sugar. Of the pure, unfettered heroin of carbohydrate.

But you say, Umm.

And then you blink.

Blink. Blink. Blink.

About 15-18% of any glucose that goes into your belly—French baguettes and potato chips and carrots and Whoppers and popcorn and pizza and Tootsie Pops, those wonderful little corn syrup orbs that can bounce around at the bottom of your backpack for months and still be ready to help out, if perhaps a bit melted, if perhaps a bit adhered to by detritus, by unnamable grit, by molecules shed by books and crumbs left by other members of the snack clan, successive generations of which have always squatted in your equipage, cheerful gypsy snack travelers come to spend part of their life cycle in your belly, bless them, bless them and their progeny, bless their shameful high-fructose illicitness, bless their photosynthesis-derived glucose molecules, those sixlet chains of carbons holding hands with doubled-up dozens of hydrogens and then streams of septuplet pure oxygen, bless the glucose, bless the sugar that the people whose hobby it is to suggest laws want to rip out of cafeterias and government snack machines, to tax because they think it’s evil and will make us fat, bless the rich gulps of dark sinful carbonation erupting from a Coke, fizzling your nose and tasting of caramel and sputtering like a small volcano of life, bless the fuel it feeds the brain, bless it, bless it all—about 15-18% of that ingested glucose goes straight to nourish the brain during the absorptive period of digestion. The brain doesn’t store glucose, it burns it, burns it on the high holy altar of cognition, burns it as it flips Cartesian cartwheels and writes or reads sentences like these.

The brain is, therefore, extremely sensitive to reduced blood glucose levels. This impairment of cognition presents an interesting conundrum, given that cognition enables self-diagnosis and treatment. You don’t have much else to tell you when your blood sugar is low besides your brain, or a gadget to test your blood sugar, but again, what tells you to use a gadget to test your blood sugar? A sugar-plumped, glucose-stoked brain.

I was fond of this particular Tootsie Pop. It struck me as being ludicrous like a scrotum is ludicrous, an aged senility implicit in wrinkled folds of melted, veiny purple that rose in small dusk-purple mountain ranges, scraps of paper like swaths of fog adhering where no paper should be. One of those small crumbs of cognition made me self-aware at some point, made me question my fixation on unpeeling the atmospheric haze of wrapper, made me look up to the table’s surface, spread with a horizon of lollipops that were as available and willing as prostitutes on Bourbon Street. But because hypoglycemia is what it is—the flip side of attention deficit, more an attention surplus disorder, as it were—I then fell in love with my brain’s obviously debilitated state, and with the pathetic state of a long-forgotten piece of candy, as if they were related by blood: one an enfeebled, starving brain and the other this wrinkled, sticky, forgotten piece of candy.

That’s how I chose not to treat the hypoglycemia, but to instead photograph the Tootsie Pop.

The fact that I took this photo is evidence of cognitive shutdown due to hypoglycemia. It's a dangerous, glowing, lovely place.

 

The last person I loved, as love-filled people do, consoled me when he broke up with me. He told me that I was beautiful, and smart.

“So what?” I said. “That doesn’t make me happy.”

“What’s so great about being smart?” I said. “Stupid people are probably much happier than smart people. Smart people think about things too much.”

I ate the Tootsie Pop. I packed my things up, left the coffee shop and walked down the block to my therapist’s office. As I walked, the loving warmth of stupidity lingered, and I picked the paper out of my back teeth.

It made me wonder about the neuroanatomy of hypoglycemia. It made me wonder over the parallels between meditation and hypoglycemic-induced stupidity. Aren’t they similar? The stilling of the mind’s chatter, either by meditative focus or sugar deprivation? It made me think of the work of Dr. Norman Doidge, or of Dr. Jeffrey M. Schwartz, neuroanatomists who write about the power of the mind to alter the brain’s mappings, to still the hyperstimulated alarm systems of the brain—the amygdala and the caudates—and about the ability of obsessive compulsive disorder sufferers to sooth and shrink their own swollen caudates through guided meditation. Could a similar rewiring be evident in a brain exposed to a forced state of meditative awareness and focus, such as hypoglycemia? Does a lifetime of diabetes and exposure to hypoglycemia make somebody more prone to using alternative synapses? To quieting the ringing alarms of the brain’s alarm systems?

What I wanted to communicate to my therapist, to Susan, had something to do with the rapture of stupidity.

Although some relatives of diabetics disagree with their findings, scientists have failed to discern permanent brain damage from recurrent episodes of low blood sugar in the brains of diabetics.

I didn’t peel off all the flaking skin of that thing. I put the entire thing in my mouth. I take entire things and pull them into me. I draw in the grit and the purple mountain majesties and the wrongness and the storm and the blood-sanctioned sugar, the photosynthesized godhead, and I absorb it all, nutrition and offal, without label or thought.

I feed myself.

Help

February 19th, 2009

“I didn’t know it would be raw,” Kevin said, looking at his seared tuna.
We swapped plates.
Before, I had gnocci.
Now, I had raw tuna.
Kevin looked at my plate.
“Did you take the right insulin for that?” he said.
Oh.
Good thinking, I said.
I took gnocci insulin. Gnocci insulin is a lot more insulin than raw tuna insulin.
So I had some bread.

That’s all.

I was on the Cape last summer with Kathy. She’s a diabetes educator.
She works with diabetic kids and their parents down in Children’s Floating Hospital.

Those parents complain a lot.

“He won’t take his blood sugar,” they say.
“He never changes the lancet,” they say. “It’s dull. It’s unsanitary.”

Kathy and I are standing in a kettle pond. It’s August.
Slivers of fish are bathed in light, flashing in the sun that pierces the water around our legs.

“I tell them to put the strip in the glucometer,” Kathy says.
“I tell them to hand it to him before he eats his breakfast.”
“I tell them to put a new lancet in for their kid.”

I didn’t know you could ask.
I didn’t know you could expect help.
I didn’t know anybody would help.

There’s a hard lump in my throat.

The fish are streaming in silver light.