Datebook: Photographer Catalogs The 'Stuff' That Kept Him Alive With Type I Diabetes
In “Punctuation: 35 Years of Diabetic Debris,” on display now through June 4 at the McLean County Arts Center, photographer Karl Smith documents life as a Type I diabetic, from diagnosis at age 15 to organ transplant at age 50.
Smith took the first photo the series in 1990 as a photography student at Illinois Wesleyan University.
“I’ve got all these syringe caps lined up in rows after rows after rows,” Smith described. “I was thinking it would have that pattern similar to the headstones at Arlington National Cemetery. I was using a particular type of camera that I was experimenting with where it would get this extreme depth of field.”
Smith said he didn’t give much thought to the significance of the subject matter until others began to react to the photo.
“They’d be, ‘Are those candles?’” Smith recalled. “No those aren’t candles, they’re the caps on a syringe. And all of them were used by me. And they go, ‘Wooow.’ And you start going ‘Oh, well people don’t realize the sheer number.’”
That’s a major theme in the series: the sheer number of injections, for example.
“I’ve calculated that I’ve given myself over 22,000 shots in my lifetime,” Smith said. “And that doesn’t include going to a hospital lab to get a blood draw. That doesn’t include all the blood pricks to check your blood sugar. Those are just the insulin shots that I’ve given myself.”
In “The Eyes Have It,” Smith is buried up to his eyes -- literally -- in pen needles. He said there were times he felt buried by the weight of his disease.
“It’s buried under the cost, it’s buried under the materials,” he said. “It’s also, none of this stuff is recyclable, which kind of distresses me because, you know, 99% of it is plastic, so 22,000 shots, 22,000 syringes, they all go into a landfill, and there’s nothing we can do about it. That bothers me.”
Smith was 15 years old when he was diagnosed with Type I diabetes.
“The first thing you have to consider is just how organized and thoughtful a 15-year-old is,” Smith joked. “I’m not going to say that I handled it perfectly. Surprisingly, my parents just kind of let me handle it, which in a way forced me to learn to handle it. But again, I won’t say that I was a good diabetic for a long time.”
For Smith, being a “good diabetic” means taking the disease seriously, and understanding the risks if you don’t.
“There are consequences to these things,” he said. “Diabetes causes secondary problems, like in my case, I am blind in my left eye. Completely blind. And I have lousy vision in my right eye.”
That’s diabetic retinopathy, and just one of the ways diabetes has changed Smith’s life forever.
“Diabetic neuropathy, I have problems feeling with my feet,” Smith continued. “Diabetic nephropathy is damage to my kidneys. And after enough time, then I needed to have a kidney transplant. And that was a, if I didn’t get the transplant, I would’ve ended up on dialysis.”
Smith also received a pancreas along with his new kidney, allowing him to produce his own insulin for the first time in decades. By that time, Smith had gone from using syringes to insulin pens to an insulin pump.
The device appears in a photo titled, “Marriage of Convenience.” Smith explained the device not only fed a constant stream of insulin into the bloodstream, but also sensed when his blood glucose was on the rise or headed for a low.
“And it would cause alarms to go off on your insulin pump, ‘Hey, your blood sugar’s dropping, hey, your blood sugar’s going up, hey, hey!’” he said. “And so my wife and I had this joke about, ‘Your other wife is bothering you, she needs some attention.’”
Smith said there was no love in the marriage between him and his insulin pump.
“I am tethered to this insulin pump,” he remembered. “We are attached at the hip, if you will. It’s not just something I can walk away from.”
Smith took the companion photo to “Marriage of Convenience” after his transplant. In “Divorce,” a scar and staples mark the place where the insulin pump once traversed his flesh.
“My wife said that after the transplant that let me bring my head up and look around and notice things that were around me,” he said. “I wasn’t so maniacal about having to take care of this addiction, this, the other woman, whatever you wanna call it, this thing that required a lot of attention.”
The transplant didn’t erase the costs of Smith’s diabetes. He still can’t drive, for one thing.
Then there’s the literal financial costs.
“People that I would work with who just bought a new car or just put a down payment on a new house, I go, ‘Yeah, I’m paying every month to feed my disease, the cost of a mortgage,’” Smith said. “And you think of that over 35 years. Your average mortgage is 30 years. I could have bought a house for the price of my disease.”
Still, Smith said, life is good now. The daily injections have been replaced by medications. He can drink a beer, eat a slice of cake, vacation with his family without worry. He wears a wristband with the name of his organ donor as a daily reminder of how it’s all possible.
“I spent six years on the waiting list to get my organs,” he said. “And it’s grappling with the thought of, 'I’m waiting for someone to die so that I can have a better life.' And that’s something really, really hard to work through.”
Smith said he wants to use this latest exhibition to raise awareness of what it takes to live with any chronic disease.
“It’s not just Type I diabetes that has all of these materials or whatever it is,” he explained. “Whether it’s simply the cost of medication or the cost of materials, it runs the gambit.”
Those costs are especially burdensome for those without insurance or affordable health care.
“You have to make that choice: do I eat tonight, do I go get my medicine tonight, which one do I do?” Smith said. “When you are in the lower end of the pay scale, these are the kinds of choices you make.”
Karl Smith’s photos are on display now through June 4 in the Dolan Gallery at the McLean County Arts Center in downtown Bloomington. A photography book of the complete series of more than 40 works also is available for viewing.
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