The Insulin Express Read online

Love you.

  I can’t believe what I’ve just read. Less than a week after I’m diagnosed with type 1 diabetes, my mom sends out an email about how much she loves cotton candy, including a picture with a giant wad of pink, fluffy sugar. She is smiling and ripping off a piece with her right hand. I read it to Cassie, and we start laughing. My mom has just sent what might be the most colossally insensitive email in the history of the digital age. I’ve never once seen her eat cotton candy, and the only time she does it is shortly after I’ve gotten the news that cotton candy can now kill me.

  At 5:00 p.m., we catch a cab to the airport and board our first flight. The five-hour hop puts us in Abu Dhabi at midnight. Cam is waiting for us as we exit the airport. He stayed mostly quiet during the countless family email exchanges of the past week. He knew if I needed his help, I would reach out for it, and I knew he would be there for me if I needed him. I saw him only two months ago in Kenya, but so much has changed in the intervening period. In many ways, I am a very different person than I was then.

  I bum-rush Cam as he’s standing there peacefully. He is not ready for the force I exert upon his chest and back when I give him a hug. He is the first member of my family I’ve seen since my diagnosis, and it feels absolutely exhilarating.

  We drive around Abu Dhabi for an hour, seeing some of the city’s highlights at night while we chat about everything that’s happened. In the morning, we head for the airport once more, this time for the flight home.

  The flight itself is almost completely uneventful. Cassie shoots me up with insulin before meals, partially because the nurses taught her how to do it, but also because my eyesight goes in and out of focus constantly. I don’t know why it’s happening, but I don’t care at the moment. I’ll figure that out on American soil. A few hours from home, I pull up the map of our flight on my TV screen.

  “That’s odd,” I think. It shows us heading to Washington, DC, not New York. Once again, I’m not concerned. I figure someone must’ve configured the map incorrectly, until the captain comes over the intercom and explains what’s happening. Flights into JFK are backed up because of weather. We’re diverting to Dulles until the delays are sorted out.

  Will this fucking journey home never end! We spend four hours on the tarmac at Dulles—thankfully, I’m tired enough that I sleep most of the time—before we are finally able to fly to our original destination. We have no way of knowing it yet, but this will become a common theme on our trip. Every time we try to return to American soil, something always goes wrong.

  We touch down at JFK late in the evening. I hand Cassie the camera to snap a photo of the moment I hug my parents. My dad is first. He is standing right outside of the international arrivals door, and we spot each other instantly.

  The ensuing embrace is a bear hug of epic proportions. We both refuse to let go. I’m not sure if he’s happier to see me or the other way around. Either way, we are thrilled to be together again.

  This place seemed so far away a few short days ago, but for everything I don’t know—about my health, about our future, about our plans—one thing is certain.

  I am home.

  Cassie and I stand before the famous Treasury in Petra, Jordan. I had just started feeling the symptoms of diabetes, but I wouldn’t know what they meant for nearly two more months.

  Cassie and I, posing in front of the Colosseum in Rome, Italy. This was our first picture together from the trip!

  Guard post in Auschwitz-Birkenau in Poland.

  A family of elephants blocking the road in the Maasai Mara, Kenya. We were more than happy to admire them as they passed. Especially this little guy!

  I have always been amazed by Cassie’s ability to connect with children of different cultures. These kids speak only a few words of English, yet it didn’t take long for them to learn how to give her a high five.

  Maasai men measure their manhood by jumping. Despite my recently torn ACL, I think I earned their respect here.

  The Songkan water festival in Laos meant constant splashing from all sides. Here, I am priming my weapon to return fire.

  Sunrise over Angkor Wat in Cambodia. Worth every minute of standing by the mosquito-infested pool in front of us.

  The temple of Bayon in Angkor, where hundreds of identical Buddha faces peer out from every corner.

  On our way down from Annapurna Base Camp in Nepal, after I had pushed my body past its breaking point.

  Cassie in her natural element at Matepani Gumba in Nepal, teaching English to our young monks. I was the disciplinarian … and the photographer.

  My first night at Dhital Educational Hospital in Nepal. I can still feel that IV in my hand.

  Together with our Nepali hosts Bimala and Krishna—and the entire family.

  I packed my diabetic toolkit with everything I thought I would need. In this case, I was absolutely willing to overpack.

  After my diagnosis, I wrote down every single one of my blood sugars, injections, and meals. It helped me get a better grip on diabetes quickly.

  The White Temple in Chiang Rai, Thailand. It only gets weirder from here.

  Throwing back a shot of cobra whiskey with a complete stranger in the Golden Triangle, Laos. Somehow, the fact that he was Canadian made me feel a bit better about our collective decision.

  On our trip to Chiang Rai, we visited the Long Neck tribe. Exiles from Myanmar, they rely on tourists for their income.

  An elephant statue in Wat Phanan Choeng temple in Ayutthaya, Thailand.

  A Chinese soldier stands before a portrait of Mao Zedong. Beijing, China, is his world—we’re just living in it.

  Cassie hiking on a crumbling section along the Great Wall of China. This hike tested her fear of heights and my resolve to overcome the ravages of diabetes.

  That moment you realize the rabbit leg you’re eating in Beijing, China, has teeth and a jaw.

  My parents traveled around Japan with us. Here, they pose in front of the gates of the Fushimi Inari Shrine in Kyoto, Japan.

  While visiting the Altiplanic Lagoons near San Pedro de Atacama in northern Chile, Cassie tried to act like the locals.

  We bundled up against the bitter cold of the Altiplanic Lagoons, nestled into the seemingly extraterrestrial surface at 13,000 feet.

  Given everything else we did on the trip, I shouldn’t have been so excited to ride a horse in Salta, Argentina. And yet I enjoyed every moment atop my steed.

  At the top of Dead Woman’s Pass, Cassie and I pause for a photo before darkness sets in along the Inca Trail in Peru.

  We woke up early in the morning for an intimate Incan meditation session before our final push to Machu Picchu.

  What’s the point of having diabetes if you can’t have fun with it? I did my best Zen pose atop Huayna Picchu, 1,500 feet above Machu Picchu in Peru.

  It’s hard to believe the locals eat these colorful birds, but I wasn’t heartless enough to try puffin meat in Reykjavik, Iceland. They’re too cute!

  Cassie and I pose for our last picture together from the trip on the water in Reykjavik. We are always looking forward to our next adventure.

  Chapter 13

  February 25, 2014

  40°19’14.6”N 74°04’23.4”W

  Shrewsbury, New Jersey

  I have never particularly enjoyed any visit to a medical professional, and my recent medical interactions have only reinforced my already negative predisposition. Since the odds are high that I will be poked, prodded, injected, tested, and examined, I find the entire experience rather unpleasant, especially if that medical professional happens to be a dentist. There is no earthly moral justification for one human being to insert electric drills, sharp picks, or pliers into the mouth of another human being, and, yes, I did once have a dentist pull out a tooth with pliers, an experience that was so awful that it haunts me to this very day.

  Another dentist even said to me, “You have very nice teeth, and you need a root canal.” These two thoughts cannot possibly go together. In point of fact, they
are diametrically opposed.

  That being said, I will make an exception on this day. And only on this day.

  Once I booked my tickets home from Nepal, my parents immediately scheduled a doctor’s appointment for me with our family physician. I haven’t seen him in years, not since I was right out of college, but within a few minutes of sitting with him on my first Tuesday back home, I remember why my parents trust him so much. Dr. Robert Carracino doesn’t have any superpowers as a healer, and he isn’t exceptional in some diagnostic field. He even looks fairly normal—a middle-aged man with dark hair who keeps himself in very good shape by cycling regularly. But he has far more valuable skills. He is honest, knowledgeable, and straightforward.

  “How did I suddenly get diabetes?” I ask him.

  “There’s no way to tell. It could be a virus you picked up somewhere. You could have been sick for half a day. And that’s it. The virus plants itself in your pancreas, and when your body goes to shut down the virus, it shuts down the pancreas.”

  If you’re looking for a more thorough explanation as to how I developed juvenile diabetes at thirty-one years of age or what biological processes were happening inside my body, you’ve come to the wrong place, partly because I know little of medicine, but mostly because medicine knows little of type 1 diabetes. Answers to those questions don’t exist yet, at least not with any degree of certainty, and they may not exist for a long time. Doctors and scientists still have no idea what causes a pancreas to fail so spectacularly and unexpectedly, and my hapless pancreas is no exception.

  I was sick for two days right when Cassie and I got to Israel, and that’s when the thirst began. As I see it, that’s the most likely starting point for my diabetes. Because it happened right when I arrived in Israel and not a few days earlier, I believe I picked up the virus in Kenya. There’s no way to reverse engineer what happened in my system, so that explanation will have to do. More importantly, I really don’t care what happened in the past since it won’t change the present. I have diabetes, and I’d better start getting used to it.

  Even if we don’t know what gave me diabetes, we do know what didn’t give me diabetes, and this is perhaps far more impressive based on my penchant to seek out and consume all manners of sugar. The two glasses of chocolate milk I would drink every morning; the boxes of Count Chocula I ate growing up; the orange-mango coolattas from Dunkin’ Donuts; the Nesquik powder I would eat with a spoon; the confectioner’s sugar I ate from the box; the Lucky Charms marshmallows that I would separate from the flavorless bits and devour by the bowlful; the chocolate bars I destroyed; the pint of Ben & Jerry’s ice cream I went through almost every night my first year of college; the chocolate donuts that got me through multiple exam weeks; the sugar-filled carbonated beverages I polished off; the chocolate chip cookies I craved—none of these had anything to do with diabetes. (But they may have had something to do with my root canal.)

  Dr. Carracino talks to me about the risks of diabetes—eyesight, nerve damage in the feet, kidney failure, etc.—and then reassures me that, with some discipline, the disease is perfectly manageable.

  “My brother has had type 1 diabetes since he was a little kid,” he tells me, “and he’s doing great. No problems, no complications.”

  Carracino looks over my blood sugar numbers and my notes. I have a copy of the insulin regimen from Dr. Bhattarai, and he scans that while flipping through the paperwork from the hospitals.

  “There’s not much I can add to this. You’re doing fine. Try to keep your numbers a little more under control, and you’ll be fine.”

  We ask a few questions—my dad, who insisted on being here, chimes in with his own questions—before the appointment is over. As we prepare to leave, Cassie picks up the conversation we started at the hospital in Nepal.

  “Once Oren gets better, we were thinking of finishing our trip. How long do you think we should wait before we start traveling again?”

  “You can start right now if you want to. You know what you have to do. If your blood sugar is high, take some insulin. If it’s low, eat some sugar. There’s not much to it. But I think if you wait two months, you’ll be ready to go.”

  “We were thinking four to six weeks?”

  “That shouldn’t be a problem. Come see me one more time before you leave.” With that, we shake hands, and I collect a bewildering array of prescriptions for all sorts of medical paraphernalia that I never needed before. My dad is not happy that we’re already talking about getting back on the road.

  My prescription list includes the following: Lantus, which is a slow-acting insulin that I take once a day; Humalog, which is a fast-acting insulin that I take before each meal; a blood-sugar monitor; blood test strips to use with the blood-sugar monitor; extra needle tips for the insulin; extra needles to poke my finger and test my blood sugar; and glucagon, an emergency shot in case my blood sugar drops dangerously low. The Lantus and Humalog come in what look like large, disposable pens with replaceable tips. When the insulin runs out, I throw out the pen and use another. (Generally, when I am referring to how much insulin I take with food, it is always the fast-acting insulin. I take sixteen units a day of the slow-acting insulin unless noted otherwise.)

  In the US, blood sugar is measured in milligrams/deciliter, or mg/dl. The healthy range is between 80 to 120 mg/dl. Anything below that is hypoglycemia, or low blood sugar. Anything above that is hyperglycemia, or high blood sugar.

  It’s amazing how quickly I become accustomed to piercing my fragile epidermis with injections at least four times a day and my finger with a sharp, spring-loaded needle before and after every meal to monitor my blood sugar. It takes a week or so, but I soon find it to be routine. As my blood sugar falls back into the healthy range, my eyesight normalizes, and I start injecting myself up with insulin instead of relying on Cassie’s help.

  One night, Cassie and I go out to a Mexican restaurant with my dad. I order chicken fajitas and try to size up how many tortillas and how much rice I’m going to eat. Generally, I try to take about one unit of insulin for every fifteen grams of carbohydrates in my food. For example, a bagel with sixty grams of carbs would require four units of insulin.

  “How much insulin are you taking?” my dad asks.

  “Three units,” I answer, eyeballing the rice. My dad has to look away as I jab the needle into my stomach.

  “Why so much?”

  “Each tortilla is one unit, and I think the rice is about one unit.”

  “Hm.”

  This becomes a cycle. Every time my dad sees me taking insulin, he has to know how much I am taking. Never once does he say, “I think you should take one or two more units.” He always feels I am taking too much. And he is never bashful about offering his advice, even though he doesn’t have diabetes and has had no reason to study it until now. He always ends the conversation with a terse “Hm,” as if never quite happy with the final result.

  A bit of history about the Big D.

  Diabetes mellitus was first identified in 1500 BCE by the Egyptians. An Egyptian manuscript described it as a “too great emptying of the urine.” Around the same time, Indian physicians noticed the same disease and called it “honey urine” because it attracted ants and flies. This became the first test for identifying diabetes. In 230 BC, Apollonius of Memphis became the first person to use the term diabetes. Diabetes is a Greek word, meaning “to pass through.” Apollonius thought it was a disease of the kidneys, and his treatments including bloodletting and dehydration, two completely ineffective treatments that did nothing to treat the disease.

  Artificial insulin, which is the medicine I inject into the fat around my stomach so frequently, was first invented in the early 1920s. Frederick Grant Banting was a young war veteran and orthopedic surgeon when something about diabetes caught his interest. He worked with his partner, Charles Best, experimenting on pancreatectomized dogs, that is, dogs who have had their pancreas removed, forcing them to instantly develop diabetes. After a number of
experiments—and even more diabetic dogs—the two learned that pancreatic extracts injected into the veins of a diabetic dog caused an immediate and dramatic improvement in symptoms. They repeated the experiment on other pancreatectomized dogs with similar results.

  On January 11, 1922, Banting and Best injected a fourteen-year-old boy named Leonard Thompson in the buttocks with fifteen cubic centimeters of their extract. Thompson was a patient at Toronto General Hospital who had diabetes. He was down to sixty-four pounds, and his blood sugar was 520 mg/dl. Upon receiving the injection, Thompson became incredibly sick, and abscesses developed on his buttocks. Undeterred, Banting and Best prepared a second, improved injection of their new extract. Thompson’s blood glucose dropped to 120 mg/dl, and the ketones disappeared from his urine.

  Banting and Best must have been relieved, but not nearly as relieved as the dogs. Their new extract was called insulin.

  What is insulin?

  Insulin is part of the mechanism that allows the body to absorb fluids and nutrients. Without insulin, my body cannot do anything with the water I drink or the food I eat. Instead, it would all pass through my system instantly, which explains the constant thirst and need to pee. That’s why I had to run out into the middle of the freezing Wadi Rum desert to relieve myself. This thirst was the first symptom of my disease. Bereft of calories and nutrition, my body consumed the only protein it could access—my muscles, which explains why I lost an outrageous amount of weight so quickly. I pissed away thirty pounds of muscle. That’s what Cassie saw in Israel when she first noticed my weight loss. On the Himalayas hike, the difficult final stretch before Annapurna Base Camp wasn’t hard because of my physical condition. It was nearly impossible because I had incredibly low blood sugar, having delayed breakfast until we reached our destination. The second I sat down and had a Coke at the top, I spiked my blood sugar and felt great again. The cramps I experienced on the first day of hiking were the result of dehydration.