type one diabetes black market street art appleton

Sitting at the Feet of Type One Diabetes

 

The Type One Diabetes
Black Market

 

Right now, as you read this, a black market thrives. They don’t trade guns or bombs or sex slaves or heroin. They trade one another test strips for insulin, sensors for infusion sets, diabetic to diabetic. They do it because of the life-or-death risks: this disease could cause any one of them to go blind, to go into a coma and never wake up, to lose an arm or a kidney. As an equal and opposite reaction, the diabetic black market curbs the complications of that bloated and profitable pharmaceutical industry that has rendered it nearly impossible for diabetics like my bride to get the care they need to stay alive. I say this as the man who writes, “To Keep My Bride Alive” on the memo line of every check I write them, my own little way of asking have you no decency, sir? The diabetes black market often gives some diabetics the only relief they can find from those who profit off of the sick, relief from what Scripture calls “usury” — excessive interest added to an asset for the sake of gouging the poor, the weak, the downtrodden.

Those in need of healing

Because of the existence of this absurdity and others, a street artist with type one diabetes named Appleton has taken to exposing corruption in the system. My bride has type one diabetes— her immune system attacked her beta cells when she was fifteen and she lost the capacity to process sugar. People seldom realize that she didn’t get diabetes because of an unhealthy lifestyle. She has type one diabetes for the same reason people with Multiple Sclerosis or lupus have their diseases: it’s autoimmune.

It attacked her.

sitting at the feet of type one diabetes appleton artworks street art

Tara has followed this diabetic street artist since the summer we moved to New York and I dug and dug until I found a way to meet him. He’s a kind and giant soul who has lived a hard and challenging life almost forty years with type one diabetes.

Last week, his show Out of the Cold opened on the Lower East Side (through Sunday August 14th) so I decided to interview both he and my wife for one of these Sitting at the Feet of interviews wherein I posture myself as a learner and let you guys become wiser through my public display of ignorance. We met with Appleton at Hu Kitchen in Union Square and started talking about the disease that unites he and my wife in its bittersweet way:

The Day They Stopped Looking for a Cure

 

Tara said, “My favorite piece from your show the other night was the 1921 one. I feel like if I owned a piece of your work, I would want it to be more representative of who I know you are.”

“No, I appreciate that,” he said.

“The 1921 one — if I had that hanging in my house — I would tell every person that came over, ‘This is the year they stopped looking for a cure. This is when the bandaid happened. And this is why our entire lives are set up for Big Pharma to make money.’ I love the composition of that piece. I think there’s a beauty about it but there’s a heartwrenching hatred. ”

sitting at the feet of type one diabetes appleton artworks street art

“I appreciate that,” Appleton said. “Lilly. Lilly–” he started.

“Eli Lilly?” I asked.

“Yeah, they financed Frederick Banting’s team. They discovered insulin in 1921. Do you think for a second — you know Linus Pauling won a Nobel Prize? The guy cured a disease, cured polio. No one cures diseases anymore. They’re like this: Wait a second — diabetes is an epidemic even in the twenties and thirties? And plenty of people don’t even know they have it so they live this weird, uncomfortable life and then they die?

His art calls out corporate researchers for making money off of the sick through selling care rather than a cure. He also calls out those that prop up the system:

“I challenge diabetic organizations that do sponsored events with Lilly. WHAT? Eli Lilly is sponsoring these events like they want to stop a $400 billion industry? So that you and I can someday go get a shot? ‘The diabetic vaccination?”’ People all over the world go, ‘Well they’re doing amazing things.’ Yes they are — but that’s maintenance – NOT A CURE. A diabetic cure would cause a global economic breakdown. Every peripheral business that comes out of diabetes — from people who just try to make new blood strips, endocrinologists, dieticians, hospitals, supply manufacturers. My guy at the pharmacy who’s always been very dear to me, sells me Lantus without a prescription, sells me sticks and everything, giving them to me at the cheapest price he could get them, just turned me onto these new sticks that are $14 a bottle and this little machine that’s like $14. I’ve got like seven of them at the house because I get tired of looking for them. Even the cheapo meter guys are in on it. It defies logic for the people who gloss over it.”

sitting at the feet of type one diabetes appleton artworks street art

In 2013, $400 million was donated to a diabetic organization. Of that money, only 7% went to cure-related research. The rest?

“Goes to bullshit fundraisers,” Appleton said. “Fake 5ks. This one young lady wrote to me, she’s a twenty-six-year-old single mom whose daughter is type-one, she said, ‘I understand, but it’s just the camaraderie.’ That I never had and never sought out. I said, ‘I get it.’ If that’s what you’re getting out of it — this positive energy — how beautiful is that? But don’t be confused.”

Three years ago, Appleton asked an endocrinologist in Los Angeles, ‘What are you gonna do when there’s a cure?’

The doctor was washing his hands and asked, ‘What’d you say?’ He wasn’t listening.

“He was worried about his golf game later because people will always be diabetic. I asked, ‘What are you going to do when there is a cure?'”

He goes, ‘What do you mean?’

sitting at the feet of type one diabetes appleton street art

Appleton said, ‘You’re an endocrinologist — it’s your specialty, right? What are you gonna do if some company in Korea that’s been working on it outside the realm of America’s Big Pharma, what are you going to do when they cure it?’ It perplexed this doctor that somebody had that question for him in the first place. Dumbfounded. I said, ‘Isn’t there something wrong with that? That you’re not bothered by it?’ I never saw the guy again after that. He wasn’t even like, ‘Wouldn’t that be great!'”

We all laughed.

“But know there are many, many beautiful doctors and diabetic professionals who truly, truly care and do wonders for all of us diabetics,” Appleton said. “Let that be known.”

Tara said, “Yes. But of all people that doctor should want a cure.”

As Appleton understands it, donations for a cure have dropped off in the last few years because diabetes is being portrayed as easy and not as difficult as it can be, as a nightmare – where every minute of the day you cannot stop being diabetic. In his mind, the lung cancer ads go right to the point – showing lung cancer victims with holes in their throats. People need to be scared that diabetes is a life long challenging nightmare.

“You can live a nice life — but it is a daily battle—mentally and physically – a daily battle. You want people to know more about type one diabetes. That it’s not their choice. Sadly smoking that leads to some lung cancers is a often a choice. A woman I met the other day was looking at her daughter’s blood sugar in California on her phone.”

“Through Dexcom,” Tara said.

sitting at the feet of type one diabetes appleton street art

“You’re kidding me! ‘Hey honey, are you okay?’ Texts her right back. If my mom had that, are you joking me? What are these people gonna do? What’s Dexcom gonna do? What’s Medtronic gonna do? Are they all dying to go out of business? No. I’m sure there’s a conscious lobby. How powerful is the NRA? How powerful is the Sugar Lobby? The Sugar Lobby gave The World Health Organization — hypocrites — $400 million to change what they considered to be the healthy dose of sugar. They doubled it. That’s out there through Freedom of Information Act. Look it up. Ten years ago, five years ago, whenever they put out the stat that said One gram of sugar a day is okay. As opposed to whatever’s crammed into a Coca Cola. And the Sugar Lobby withheld their money to blackmail World Health into saying Did we say it was a gram? Why don’t we make it two grams? When I was a kid we put sugar all over everything.”

He pantomimed dumping it over an invisible plate.

“Look at all the money. They can’t wait for Africa to become diabetic all over the place. They can’t wait for the Latin American markets. They just can’t wait for the Chinese. They have the patent on insulin. A friend of mine just gave me a bottle that had Japanese writing on it. I’ve been dying to get bottles in every country. They’re all in English because, guess what? We make the insulin. There’s no generic insulin.”

sitting at the feet of type one diabetes appleton street art

Appleton used to buy insulin from Canada to get cheaper Lantus. Suddenly, they stopped selling it though they had previously sold it without a prescription.

“That’s how they’ve controlled the world. My endocrinologist knows. He’s diabetic. He says, ‘All I can do is help us. That’s what I want to do.’ He’s a very sought-after guy, speaks a lot, I thoroughly enjoyed him last time we were together. Everyone loves to say to us, ‘How is the whole world in on something?’ Marketing teams at pharmaceutical companies come up with restless leg syndrome. I’ve shaken my leg since I was five years old. But now it’s something that a marketing company creates to stop you from shaking your legs. What are you talking about? Who cares that you’re shaking your leg? They’re not doctors. They’re mad men.”

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He pointed to Steven Pressfield’s testimony in The War of Art:

Do you regularly ingest any substance, controlled or otherwise, whose aim is the alleviation of depression, anxiety, etc.? I offer the following experience:

I once worked as a writer for a big New York ad agency. Our boss used to tell us: Invent a disease. Come up with the disease, he said, and we can sell the cure.

Attention Deficit Disorder, Seasonal Affective Disorder, Social Anxiety Disorder. These are diseases, they’re marketing ploys. Doctors didn’t discover them, copywriters did. Marketing departments did. Drug companies did.

Sharing for a Cure
& Sharing About Cures

 

Even for those few looking for a cure, one of the great failings of the American science lab is the lack of shared research. Other countries do it, why don’t we? The few people looking for a cure won’t share information because there’s still going to be money for a cure.

“Stem cell research — all of that — is still about corporations making money,” Tara said. Tara has people often sharing stuff with her about a cure. “They think about me when they hear diabetes-related stuff, but I don’t read anything people send about cures, really.”

“You just give up on it?” I asked.

15

“It’s a way of protecting myself from the thought of a cure. I distance myself from the information because I can’t think about it in my lifetime. But I distance myself from the article because I can’t handle it today. Certain things, if they’re shared by other diabetics or in discussion boards about CGMs and stuff, I’ll pursue more information along those lines. It’s like that guy last night who said, ‘I don’t read a book unless it’s recommended to me.’ I feel the same way about someone who reads something random and sends it to me — they don’t necessarily have diabetes. But if some diabetic has read something, that’s a safer gateway. Even if other diabetics post about cure stuff, I don’t read any of it. I only read articles that talk about care. Even then I don’t read articles about care if it’s too much of an emotional investment for me at that point in time.”

I’m a writer and a reader, professionally. People send me reading recommendations… often. I got a text from a guy the other day recommending an article. Life is short. Books are many. Why waste time on bad ones? Or bad articles written by still-developing authors yet to be tested by time? So I asked him, “What’s this about?

He said, “I don’t know. Sometimes I just see a title of something and send it to someone it reminds me of.”

I laughed. I count on the recommendations of friends for quality modern pieces and he hadn’t even read it. It wasn’t a big deal, but in Tara’s case, I cannot imagine that frustration tethered to my daily life and health and sanity.

 

 

The Diabetic Community

 

Tara texted mom. “She was like ‘How was the show?’ and I was like ‘it was so beautiful and good.’ Lance and I had a horrible fight all afternoon and evening before we got there. I was just a mess. But it wasn’t until we walked in the door that I realized I was emotionally gearing up for seeing this.”

sitting at the feet of type one diabetes appleton street art

“Oh wow,” Appleton said.

“I didn’t realize that I was…”

“And you hadn’t seen the earlier show,” Appleton said, “which had a lot of the work.”

“Right.”

“I really like that,” he said. Referring to how visceral her reaction was, of course, not that it caused strain in our marriage. Which is really just the strain of diabetes on both of us as people.

“I really had to apologize to him,” she said. “My emotions were off the charts because I’m going to this thing that was like diabetes everywhere and I didn’t connect those two things until I walked in the gallery. But then I texted my mom a picture of all the people that I met. She texted back all those people have diabetes? I wanted to start crying reading that. Yes, type one. And she was like That’s so cool! I was thinking that’s HORRIBLE.”

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He laughed. “Right.”

“But she meant in terms of the community.”

“Of course.”

“That’s the sweet part is that you’re helping foster community. The bitter part is just diabetes.”

Appleton said, “When I met that whole little circle of people, my friend Dan was like, ‘Well they’re all type one diabetic.’ And I said, ‘For starters, I’m so sorry to hear that. Thank you for coming down.'”

Appleton keeps creating a third space for that to happen. Tara doesn’t know if that was his original intention or not, but Appleton certainly sees himself as an educator and an advocate.

Sometimes educating means you have to let others advocate for you.

 

sitting at the feet of type one diabetes appleton street art

Family and Friends

“In high school,” Tara said, “I was diagnosed and my friends from youth group and stuff knew I had some issues with the nurse, they gave me the wrong-sized needle, I gave an injection that went straight into the muscle and hurt. I stopped giving injections for a month. My parents had to do it. Anyway, my friends knew I had to go on this weekend trip or choir tour or camp or CIY or all of these things that were a part of my life growing up — they had this cooler we could plug into the dashboard of the car that could be hot or cold. The boys would carry my cooler to the front of the church van or the dorm. My friends from youth group experienced life with me,” she said.

“Change,” I said.

“Yeah. Me learning and communicating about it because I was processing it. Then they also were the ones who were kind of my buoys or life preservers. They helped me when I was by myself. When you live at a week of camp, when you live at a week of CIY, it’s a completely different experience than just seeing me for a few hours a day every few weeks.”

“Which is what you mean when you say they know me,” I suggested.

“Right. In 2009 after a group trip to Thailand, my future boss, Chris DeWelt, said, ‘I knew it would be good to be on this trip together so we could get to know each other and coordinate working together in the fall.’ Chris and I got to talk about the plan for the department on our flights and stuff, but he was like, ‘It wasn’t until then that I really could see the ins and outs in how diabetes affected you.’ He said it again when Abby [Chris’ daughter] became a type one diabetic after her surgery.”

That’s the fight: seeming normal until she isn’t anymore. I remember telling one of her colleagues at the college she had diabetes and he said, “I had no idea.”

sitting at the feet of type one diabetes appleton street art

Normal Except When I’m Not

There’s this diabetic blogger Tara enjoys named Kerri who says, “Of course I’m a normal person, except for the times when I’m not.” Meaning that she would like to live a normal life and not be seen as weird, but when a high hits or a low hammers her, it suddenly sends her into this alternative state of being in a Invasion of the Body Snatchers kind of way.

Appleton rejected the metaphor because he never feels normal:

“A recent friend I broke up with — she’s very important to me — had mentioned the reason was the lack of presence in our relationship. I said, ‘What if I said I was dragging around my grandfather and I had to take care of him constantly? My attention would be on this person. But it’s on my schizophrenic body.'”

In Greco-Roman times, some murderers would get punished by having the corpse of the victim strapped to them that in walking around tethered, they might rot together. Appleton’s pieces mirror that: his body and the body he must carry.

sitting at the feet of type one diabetes appleton street art

“Did I test?” he asked. “What was I an hour ago? I have to memorize my numbers all day. You take a shot at six-o-clock in the morning and you go to bed and you wake up like forty-five-minutes later and you’re like, ‘Wait a second…’ I used to want to get a tattoo that had two boxes and I would just mark an X with a permanent marker for whether or not I gave my shot. And at the end of the day I’d wash it off and make another one the next day. I’ve been thinking about diabetic tattoos my whole life.”

“I heard about tattoos,” Tara said. “Since we have an autoimmune disease, some tattoos can be really detrimental because your body is constantly fighting to get rid of the ink. We already have something that attacked part of our body so there’s a lot of people with tattoos and autoimmune diseases that have a lot of very serious health complications.”

“That’s good to know,” he said. “Thank you for that. I’d never heard that. Trying to heal some wound.”

“And your body is already attentive to that sort of thing.”

“Yeah. It wasn’t before I was diagnosed. Where were you when I needed you?”

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She laughed, probably at the image of Appleton getting a tattoo at age nine. Neither of them have tattoos. Both of them expressed interest — even a slight mourning over the fact that they could never get one, never have a legitimate right of refusal. Little details stack up like that and make them both emotional.

 

sitting at the feet of type one diabetes appleton street art

 

Doctors and Fellow Diabetics

Tara said, “I think Lance’s assistance and support is invaluable in the day-to-day life. But I do think there’s something when I meet a group of diabetics like on [the opening night of Appleton’s show]. This makes us instant friends. It’s so weird because how many categories of life do that? You could say, We have the same music tastes. But it’s not that deep. I was talking to a guy the other night who said he would not get an endo who doesn’t have type one, but in my experience, I feel like my endo is the only person that isn’t a diabetic who actually knows everything it takes for me to stay alive. And that’s why I trust them. Not everyone else understands the complications.”

Appleton nodded.

“It’s a big emotional withdrawal,” Tara said. “To access supplies knocks me back. I feel blown over any time I think about attaining supplies or prescriptions or… part of it is just because I’m dealing with this twenty-four-seven and I can’t even… I don’t even have the energy–”

“To do that,” Appleton said.

“To pursue more than how I feel,” Tara said, “much less fight companies to get what I need to hopefully feel okay. It’s literally insult to injury. I wish there was one person in the industry that knew what they were talking about — dosages, nutrition, and supplies — where you could just actually get what you needed and you didn’t have to recall and check supplies. We couldn’t do what we do without the endocrine team. And I feel incredibly supported by them and they bend over backwards to fill prescriptions and help me with emergency insulin when the pharmacy’s giving me hell — they’re like, ‘Here’s three bottles of promo insulin.’ Dr. Hamlett’s office has been amazing.”

sitting at the feet of type one diabetes appleton street art

She continued, “But they can’t control pharmacy Target at Atlantic Avenue Barclay’s Center illegally changing my prescription. They can do a preauthorization letter for Bayer Contour Next strips to my insurance company, but then Oscar — my insurance company — gets that and decides to leave me an automated voicemail? Saying they’ve rejected my preauthorization? And then I get a letter in the mail from them that says it’s not a medical necessity for me to have these specific test strips when those are the test strips that communicate with my pump and my CGM and my glucometer? Then I got a letter dated the next day that said they were going to approve it. But I get both of them the same day and wonder if I’m going to spend two more hours on the phone with this company to see which one they actually meant. Or should I call the pharmacy to see if they’ll fill it? Or is the script from the doctor still rejected? Or should I call the doctor first? The pharmacy first? It’s constant. I realize the healthcare industry is always changing things. I realize the insurance is always changing and the pharmacists have to be on top of it too and their computer systems probably can’t even keep up with the way that things are changing, but sometimes when I talk to someone in my insurance company, I say, ‘I know that this is changing so much, but it is YOUR JOB to know how it’s changing. Someone in your office should know.’ No one in the pharmacy knows who to send a preauth form to or if I have a dosage they can’t fill.”

sitting at the feet of type one diabetes appleton street art

Diabetics like Appleton and Tara can’t run their computer system for them too.

The biggest problem with advocating for every part and parcel of the supply chain is that stress raises blood sugar. The actual process of obtaining insulin makes it harder for Tara to process insulin. The belabored process is literally poor care. When Appleton’s concerned about his high sugar, that’s stress which raises the sugar. You can’t give insulin for stress. Stress hormones make your body resistant to insulin. So you’re perpetuating that high. Tara knows this as well. It’s a sick cycle.

 

Good Pharma

“Having a pharmacist that’s on your side and in your corner that is as close to you as a doctor would be is the best,” Tara said. “Even if you don’t have a doctor who’s a great support, you can still get what you need. But if you don’t have a pharmacist that’s a great support, you can’t even get what you need.” A doctor’s office staff can help. Without someone in your corner at a pharmacy — not even just selling over the counter — but who will just keep making the phone calls you need to access the supplies you need.

sitting at the feet of type one diabetes appleton street art

Luckily, I’m related to some great pharmacists who have helped me over the years — particularly in this recent season when I almost died and have fought medical supply companies for the better part of ten months. But should I have to find a back door through the system in order to get what I need? Shouldn’t someone in the medical supply or insurance industry here in New York City be able to do their job? Whatever happened to morally excellent work?

Appleton brought in his German Shepherd from outside. Tara said, “We were talking about medical alerts. Almost every diabetic I met at your gallery wasn’t wearing stuff. They weren’t wearing medical alerts. They weren’t wearing their pumps outside. It was only Eric that was visible. As soon as I got there, I was looking for little bruises on people’s arms or bumps from the Dexcom or pumps.”

“That’s funny,” Appleton said.

“So when you said, ‘The diabetics are here in force tonight,’ I decided to be a little more outgoing and introduce myself to someone rather than just looking to see if I could tell. But yeah, only one guy really… pump on the belt loop.”

sitting at the feet of type one diabetes appleton street art

“Nowadays I’m like this.” He grabbed his needle and faked like he was going to inject himself with his shirt raised in the middle of Hu Kitchen. “I don’t care who you are or where you are. I don’t know if you were part of this thing that was on Beyond Type One’s site? What I’m about to tell you sounds like it would happen in some less-understanding part of the world, including less evolved parts of New York City. This restaurant posted signs that read, ‘Do not take your shots in front of people.’ My response to that is if you have to write a note asking diabetics not to take their shots in front of other people, then most of your clientele is diabetic. Fact check it. One in four people in the year 2030 will be diabetic. Think about that next time you’re in an elevator.”

 

sitting at the feet of type one diabetes appleton street art

Tara tested: 134. She showed him her pump. In a strange moment of grace, her sugar had been hovering around 134 for the last twelve hours, slowly declining towards 100. It’s this beautiful straight descending curve towards normal that we never see, the unicorn of diabetic days — this on the day we were meeting to talk about the disease.

“You gotta figure out the one-thirty-four secret there, Tara,” Appleton said. “So awesome.”

“I slept the whole night without my pump alarming. I slept eight hours,” she said.

“I’m glad you said that,” he said. “The reason I’m so intrigued is because I thought you had to have the pump then this other beeper. I thought you had to have two units. I gotta do that or it’s gonna be the death of me.”

A dark shadow passed over both of their eyes like some flashlight had pointed up at both of their faces from below, exposing creepy crawly things hiding under their stone-cold expressions.

 

sitting at the feet of type one diabetes appleton street art

Tara said, “When people say, ‘You have such great technology!’ I always feel a little bit of responsibility in an advocacy standpoint to say, ‘Yes, this is amazing and I’m thankful for it, but every day I’m changing a needle or a battery or a sensor or get a prescription refilled from my doctor. There’s ten things on me right now.'”

 

“You can sleep with the pump too?” he asked.

“Mhm,” she said.

“Never bothered you at all?”

“No. Two nights ago I got a no delivery, which I rarely get, but that just means the insulin’s not getting into me. It’s like backed up into the thing.”

“Right. I toss and turn so much.”

sitting at the feet of type one diabetes appleton street art

The insertion site for Tara has varied. They offer two kinds: a plastic catheter and a metal needle bent at a right angle. The upside of the catheter is you have less of a chance feeling it there when it goes in laterally like any other port. The upside of the needle is a more consistent, cleaner delivery — of course if it gets pulled out…

Appleton winced. “Those are the stories I’ve heard about bleeding.”

 

sitting at the feet of type one diabetes appleton street art

The Burden

Rolling over at night and worrying about tubing serves to show how all-consuming this disease is.

“It’s constantly on your mind,” Appleton said. “You’re never not diabetic for a minute. You’re gonna go somewhere? You gotta test before you go into that meeting. A job interview. When you wake up and when you go to bed. It makes you think about your eyes and your feet and everything else. It’s depressing. And it’s heavy. And you wish someone was just going, ‘Hey man. I’m here. And I know it. And you’re here.’ In any friendship, it’s important that somebody just knows. I hate to be so… It’s a mother #µ¢&ing nightmare, but it is. A nightmare. And it doesn’t have to be if people in your life… I’m always fascinated by… like the kids we met the other night how–”

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“Exuberant they are,” I said.

“Right. And everything’s cool. With their maintenance, they may never have the complications…. But I think about people. It’s a rich man’s disease. You can’t be a poor diabetic! You’re just gonna eat horrible food. You’re probably drinking a dollar soda instead of five-dollar fresh-squeezed orange juice.”

 

 

“To get your sugar up?” Tara asked.

“Yeah. Or you might never have juice. You might have dollar-ninety-nine for two liters at Costco. Why? Because. You’re not going to read up and find out fructose kills testosterone.

“Right,” Tara said.

“I must say, you guys are awesome because… to have a partner in this is really… to have somebody who’s completely with the program. It’s choking me up a little bit actually. It’s important that you feel that trust and it doesn’t happen that often. The most important thing about being diabetic is that it can be very lonely. But it’s very hard to just go, You have no #µ¢&ing idea. You have no idea. You’re with me. You take care of me. You ask me how I’m doing — when I’m checking, you’re thinking of checking, but that weight… And you grow up very private too when you’re diabetic. So it’s not a habit to tell people. It’s really not. You’re like, Oh I’m cool. I’ll still get high with my friends in high school. Still smoke pot and still drink beer. You’re not going to tell them, Oh I feel like shit right now. You’ll just say, Oh I’m hammered or I’m tired. You wouldn’t say anything about diabetes. That’s the real weight of it: not feeling that people really know and then feeling so vulnerable that somebody doesn’t want to be a part of that life. I’m always cryptic using the word ‘friends.'”

“Relationships,” Tara said.

sitting at the feet of type one diabetes appleton street art

“They may see that it’s… I’ve been with friends where it’s like, I can’t see right now. Let’s just get something to eat, I can barely see. And I thought it was funny that someone cares for you and knows that. But they may not… they may be selfish and going, ‘Do I want to go thirty, forty years with this person? Ten years with this person? Have to take the time out of our lives to maintain something?’ And then oh yeah you’ve got to make a living. And then you want to pursue your art. Get in touch with people. Some days it makes me want to just turn off my diabetes for two hours right now to watch a movie?”

The lack of understanding and lack of respite, ultimately, affects even the power of technology to help.

sitting at the feet of type one diabetes appleton street art

The Things We Carry

“All of this technology is so great,” Tara said, “but I’m sick of it. Yeah, I’m thankful it wakes me up when my sugar’s dropping or rising and I can fix it faster. But any time someone’s like, ‘Wow. Aren’t you so thankful you’re in this technology age?’ I’m always like, ‘Yes, but this isn’t going to go away.’ I have to change… I have to carry a HUGE purse around so I have supplies to replace every single thing that I wear on me and then if it breaks — like my pump stopped working Saturday night — it was like, ‘Thank goodness I have this stuff.’ I plant insulin all over places in New York City so that I can grab it. I’m carrying it with me right now, which I don’t know that I should be because of the heat. But…”

It’s like she’s carrying around a bug-out bag everywhere, but she’s not a survivalist. And if she were a survivalist — a prepper — her bug out bag would be twice as huge.

I can hear you now:

What all could she need, really, Lance?

“Extra pump infusion sets. Reservoirs. An extra lancet to poke my finger in case mine breaks. Syringes and insulin in case my pump breaks. But I only carry short-acting insulin, which is what my pump uses, so if my pump does break, like it did Saturday, I don’t have long-acting insulin with me because I’m not going to carry long-acting insulin with me every day. If my glucometer breaks, I can’t carry two with me every single day. Sugar. Protein. Extra test strips because sometimes I run out. I unload my purse when I get home and before I leave, take out trash and any extra weight, then refill all of my stuff. It’s just a lot. All of the time.”

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Someone came to visit her here in the city. We were walking a lot, as New Yorkers do — six to ten miles any random day. When we have guests and trekking all over the city, it’s easily ten miles. This guest — someone close to her — asked, “Do you ever just leave the house with only your metrocard and I.D. And just not want to schlep stuff all over the place?”

And she said, “I can’t because I have diabetes.”

And this guest — this person who meant the world to her — started crying.

Tara didn’t mean to shame her.

It’s just for a moment, that person forgot. Tara doesn’t get that luxury. Burrowed into her subconscious is this deep urge to snap awake if her sugar’s dropping, all the time, always. That’s the burden.

When her pump broke two Saturdays ago, she planned to leave her continuous glucose monitor site in because she didn’t want another inch-long needle in her. Once her new pump arrived (it was thankfully under warranty) she planned to reset it, recalibrate it. But then she realized:

“Wait a minute. I could have a little more than twenty-four-hours of no adhesive on my body at all. No cording. Nothing.”

So she went for it, tore off the CGM.

“It was such a strange experience for me because it’s been so long since a pump went out on me and not since I’ve gotten the CGM. I was completely untethered and scared to death to give Lantus. There’s something really freeing about going without a pump and it helped me consider what a cure would be like and it helped me also understand people who don’t want to be attached to a pump.”

Like Appleton.

sitting at the feet of type one diabetes appleton street art

Bittersweet

 

Tara feels that anything about diabetes is bittersweet. That’s what she told Appleton the first time we met. It’s bitter that we’re at a diabetes art show. It’s sweet that his show created community. It’s bitter that she has to track down all of these prescriptions and batteries and needles and supplies. But it’s sweet that she has tighter control. Her pump breaking was horrible and terrifying, but it was amazing to live a life unconnected to cords, to roll over and roll over all night long while she was sleeping and never worry that night about tearing out an infusion site or to walk by people on the street the next morning without worrying if they’re going to tear out her CGM accidentally.

“Nothing about it isn’t both bitter and sweet,” Tara said.

Kind of like the bitterness, sour stomach, and bad breath that follow a high.

And the sweet ice cream that treats a low.

sitting at the feet of type one diabetes appleton street art

 

 

 


None of the above should be considered professional medical advice. Contact your primary caregiver or endocrinologist for your own health concerns.

 Photos of me and Tara by Mark N. Photo.

If you’re interested in buying one of Appleton’s pieces, drop him a like at AppletonStreetArtWorks@gmail.comtell him Lancelot sent you.

Appleton’s show closes this Sunday. Make sure to go see him:

 

New York based artist Appleton, well known in New York and Los Angeles for his iconic hand cut images of insulin bottles, opened his latest exhibition “Out of the Cold” at the 51 Orchard Street Gallery on August 4th to a full house. The exhibition features new paintings, mixed media, photographic works, and sculptures focused on diabetes, using insulin bottles the artist has collected over his forty years of living with the disease. The exhibition seeks to raise awareness about the severity of this underacknowledged illness by iterating reproductions of the insulin bottles familiar to those living with type one diabetes.

Out of the Cold
Solo Exhibition
August 4 – 14, 2016
51 Orchard St

New York, NY 10002

Opening Reception August 4th 7-9PM
Artist Reception August 11th 5-9PM
Gallery Open 1-7PM Daily

 lancelot tobias mearcstapa schaubert monogram

 

 

 

 

4 Comments

  1. I know nothing about diabetes, as I have thankfully not had any experience with it. I so admire Tara for taking such good care of herself,and am so thankful that Lance is in her corner all the time. It cannot be easy on either one of you, but with God on your team, you work together to keep ahead of this dread disease.
    Lance, I admire you for writing this very explanatory article. It is very well lwritten, and informative.
    May there someday be a cure. God Bless both of you, Grandma

    1. Thanks Grandma. We really appreciate the support — it’s good to have one another. And thanks for the words of encouragement and praise — always nice to have a fan 😉

  2. So very well written! You are an amazing husband for even opening a book about anything diabetes! My 7 year old just today had his 6 year diabetes “birthday” and my husband is going on 13 years next month. I commend you for all you do and say! From day one of diagnoses I know there will never be a cure, we just live our lives as “normal” as we can. I say “we” because I’m truly the one with the most responsibility being their caretaker which is a huge responsibility! I commend you sir! And thank you for this, especially on a day I needed to hear all of my thoughts written so well!

    1. Thank you, Kristen. So happy to have you stop by here.

      I’m just doing my job: in sickness and in health.

      So sorry to hear about that — it’s a terrible disease and I pray they be healed. It’s good to share in the burden, for sure. Thanks for the commendations and encouragement. Always great to have another reader!

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