The first doctor’s instructions to eat more fruit and drink more fruit juice were, in hindsight, both a blessing and a curse. The curse part is obvious. That doctor sent my blood sugar into the stratosphere, accelerating my downward spiral into diabetic ketoacidosis, a very dangerous condition where the body poisons itself. But I see it as a blessing for the exact same reason.
Without his terrible medical advice, I probably would’ve kept going for a few more weeks without visiting another doctor or hospital. I would’ve been in bad shape, but not horrible shape, hovering somewhere above the danger zone without plunging straight into it. Because of his general lack of sound medical knowledge, my condition deteriorated so rapidly that I had no choice but to go to the hospital, and that’s where I finally got the help I needed (even if it took me two tries to find the right hospital). Once the doctors gave me insulin, I immediately put on weight, through both fluids and solids.
Since then, pharmaceutical companies have cranked out insulin pumps and continuous glucose monitors and insulin pens and inhalable insulin— and the list goes on. Frankly, I don’t know whether to be thrilled about all of the medical advancements in the last fifty years or pissed off that no one has cured this disease in 3,500 years, so I politically plant myself somewhere in the middle. I will be content with my disease, thankful that, if treated well, it is a nuisance and nothing more.
What will my life be like from here? It will be just as fun and ridiculous as it always was. To me, there is no old life and new life. There is life. There is no before and after. There is now. Life wasn’t ever really normal before, so why should I expect it to become normal?
Let’s review: A suburban Jewish kid from New Jersey falls into a career in television news while simultaneously learning to fly a plane his father built in the basement before quitting his job to travel the world with his interfaith wife. Does that storyline change all that dramatically if we add the modifier “diabetic” into there? Don’t think so.
I won’t ask the question, “Why did this happen to me?” Very simply, it happened. Not everything has to happen for a reason, even though I feel that most things do. It won’t help me to sit there and pointlessly ponder if diabetes was part of some bigger plan.
More importantly, it’s not fair to others to ask that question. Why did one of my best friends have a stroke at the same age at which I developed diabetes? Why did an acquaintance of mine die in a car crash in our fourth year of college? Why did a friend develop a malignant tumor in her early twenties, forcing her to go through multiple rounds of chemotherapy? These people and their families may ask, “Why did this happen to us?” I have no such right. Not with something as simple and treatable as diabetes.
I know I am not alone.
The World Health Organization estimates that nearly 450 million people around the world have diabetes. In the United States, approximately twenty-nine million people have diabetes. Only about 5 to 10 percent have type 1 diabetes, in which the pancreas simply quits producing insulin. (The vast majority have type 2 diabetes, where the pancreas works, but fat cells get in the way of the insulin doing its job.)
Type 1 diabetes is almost always diagnosed before or right after puberty. It is incredibly rare for type 1 diabetes to happen after age thirty. I guess that makes me lucky.
For those keeping score, that’s now two straight misdiagnoses from medical types. After I blew out my knee the previous June, the resident at UPenn hospital said I had probably just strained something. It took my insurance two weeks to approve an MRI because she didn’t order one at the hospital that night. And then Dr. Diabetes couldn’t figure out that I have the same disease he does. Seriously?! You guys spend eighty-seven years in medical school. Let’s make sure your diagnostic accuracy rate is a bit higher than the MLB batting average. Derek Jeter is allowed to bat .310. You are not.
And now, a few quick personal notes.
To the medical staff at CIWEC in Kathmandu: Thank you for getting me home so quickly once my care was in your hands. I think my parents appreciate this even more than I do.
To my pancreas: I’ll see you in hell. Quitter.
To Nesquik chocolate milk: I will do everything in my power to work you back into my life in a way that’s good for both of us. Right now, we need some time apart. It’s not you. It’s me. You haven’t changed. I have. Our relationship lasted thirty-one amazing years. You’ll always be in my heart until you’re again in my stomach.
Back at home, I assemble a diabetes travel kit with all my prescriptions and a few other items to help me along the way. I buy a diabetes food guide to gauge how many carbohydrates and sugars are in the food I’m eating, a small digital food scale in case I need to weigh food, measuring cups, and glucose tablets to keep my blood sugar up in case it drops too low.
Although the future suddenly seems very uncertain in ways it didn’t just a few weeks ago, Cassie and I are sure of one thing: we want to finish our trip. That may seem crazy. In fact, it may be crazy. But for us, and more importantly for me, it’s a very simple decision. If I decide to call off the rest of the trip now, then I have already given in. I have accepted restrictions on my life, and that sets a dangerous precedent so soon after my diagnosis. If I limit myself now, I will limit myself forever.
Naturally, my parents completely disagree. My dad wants me home for at least two months (“until Passover”), and my mom wants me to cancel the rest of the trip. We have a very different goal. We want to be on the road again by Cassie’s birthday, which is the fifth of April, only a few weeks away. Anything worth saying in an Israeli family (or any other Mediterranean family, from what I understand) is worth saying at 160 decibels, and so we discuss the acceptable date of departure in ways that sound and feel very much like shouting matches.
“You can’t leave yet. You’re not ready! Traveling with diabetes is different, and you don’t know how to do it!”
“Of course it’s different! It will always be different! I will never learn how to travel with diabetes while staying at home not traveling with diabetes.”
“I want you to stay at home a few more weeks.”
“Why?”
“So you can learn more about diabetes.”
“What more is there to learn? The doctor said I would be ready to travel.”
“The doctor doesn’t know you.”
“Yes, but you don’t actually know anything about diabetes.”
And so on and so forth. These arguments continue ad nauseam with no one conceding defeat. We are determined to travel, and my family is determined to convince us otherwise. Finally, Cassie and I decide to buy our tickets without parental approval. We book our tickets—a flight on March 25 to Bangkok via Hong Kong.
When my family sits down to our final dinner together before the flight, I have to count my carbs, shoot up with insulin, then wait five minutes for the medicine to kick in as my family begins eating. It doesn’t feel strange around friends or strangers. It does around family for some reason. I suppose it’s something I now have a lifetime to get used to.
I eat two bagels, slathered with cream cheese and covered in lox, with a healthy dollop of whitefish salad on the side.
“How much insulin are you taking?” asks my dad.
“Eight units.”
“Why so much?”
“Each bagel is four units.”
“Hm.”
We are home for thirty-one days and a couple of hours. Our flight leaves at two in the morning from Newark airport. This time it’s my parents who drop us off at the airport for our flight to Bangkok with a layover in Hong Kong. My dad gives me a bear hug that is just as tight and strong and worried and loving as the one he gave me the moment we landed back in the United States after my diagnosis. He gives me one last piece of advice before we head for the check-in counter.
“At your age, everything should be working. If something isn’t working or you don’t feel good, come home.” It is good advice. I had to come home once; I don’t plan on doing it
again. All I need is for my body to cooperate, which it hasn’t had a great track record of doing lately.
While checking in for our flight to Hong Kong, I see the ticket stub from my last flight—Etihad Airways 101 from Abu Dhabi to JFK on February 21. I am reminded of everywhere I have been—physically and emotionally—over the last five weeks. It makes me hesitate for a long moment. Cassie is making a bit of idle chitchat with the airline employee, so I have time to stare at the small piece of paper tucked into my passport. So much has changed. So much seems fundamentally different than it had when I was on that flight.
Once again, only one thing is certain.
We are on the move again.
Chapter 14
April 6, 2014
20°21’07.0”N 100°04’57.5”E
Chiang Rai, Thailand
I can’t quite tell if our tour guide is a guy or a girl. Or maybe a guy who used to be a girl or a girl who wants to be a guy. Such distinctions are often blurred in Thailand for reasons I can’t quite pinpoint, and the line between men and women is murky in ways that can be very confusing, as evidenced by Bangkok’s ladyboys, a thriving industry of beautiful women who just happen to be men. I have no idea what it is about this country—maybe the food, maybe the heat, maybe fresh fruit shakes that cost two dollars apiece—but changing from a woman to a man (and presumably back again) seems to be no big deal. They have a refreshingly liberal view about sexual identity, even if it makes it somewhat difficult to identify which particular gender you find yourself talking to at any particular moment. Theoretically, the odds of guessing must be fifty-fifty, but I somehow feel far less confident than I statistically should be.
“Our first stop today will be the White Temple,” says our guide, whose Adam’s apple I didn’t notice for the first few hours of our tour. This turns out to be only partially accurate. Our first stop is, in fact, the tourist shops on the way to the White Temple near something advertised as a thermal geyser.
The thermal part is true. There is a thermal spring roughly halfway between Chiang Mai, the largest city in northern Thailand, and Chiang Rai, our destination for the day. The geyser part is a mixture of fantasy and nonsense. A pipe clearly shoots out the hot water, creating the “geyser.”
After a fifteen-minute stopover, we’re back in the minibus on the way to the White Temple.
Ahhh … the White Temple. The entire reason I signed us up for a full day of driving to northern Thailand and back in the first place. I had read about the White Temple, officially known as Wat Rong Khun, while trying to figure out where to pick up our trip. It is, by most accounts, the strangest, weirdest, most bizarre temple in Thailand, a not insignificant feat given the other thirty-three thousand temples in this devoutly Buddhist country.
Wat Rong Khun is a Buddhist temple that, much like its nickname suggests, is blindingly, unabashedly white. From across the street, the temple looks fairly normal, minus the hole it immediately begins burning in your retina from its offensive brightness. It is one part temple and nine parts tourist attraction, mixing religion and pop culture in ways I’m pretty sure should never be mixed. How else do you explain the torso, arms, and head of the Predator, from the 1987 eponymous Arnold Schwarzenegger film, sticking out of the ground? The Batman and Hellraiser busts hanging from a tree? The painting of the X-men, Superman, and Batman flying around and kicking and punching stuff in ways that superheroes should, but probably not in Buddhist temples specifically and religious sites generally? Every white thing here is supposed to be deeply symbolic, with white layer upon white layer of hidden meaning buried within each white detail. And yet, instead of feeling symbolic, the numerous movie, music, and comic references make everything feel more than somewhat commercial. The shopping mall across the street doesn’t help.
We have seen hundreds of Buddhist temples since getting back on the road, and they all feel distinctly more—how shall I say?—Buddhist than this one. If there is a deeper meaning here, I haven’t quite figured out what it is.
A few months after our visit, an earthquake hits the area and damages the temple, which seems to answer the question “What does Buddha think of this temple?” with little room left for doubt.
For a long time, we debated where we should get back on the road. According to our original plan, we were supposed to splurge on scuba diving lessons in southern Thailand before heading north to explore the more historic part of Thailand. In the end, we decided to cut out the scuba lessons. Something about the possibility of having low blood sugar while sucking compressed air underwater didn’t appeal to me.
I blamed myself for the lost time because of diabetes and our time at home, and I promised Cassie we would not cut our trip short again.
We booked a flight to Bangkok via Hong Kong. The airline served a couple of meals, all of which turned out to be breakfast. The twelve-hour time change meant we essentially had an incredibly long day, so we ate breakfast about four times in a row and consumed a commensurate amount of coffee to go with it.
We landed in Bangkok before noon, and it was scorchingly hot. We went from below freezing in New Jersey to a hundred degrees in Thailand. Anyone who says they are a fan of hot weather needs to experience the combination of soaring temperatures and drenching humidity that are a staple of Southeast Asia. You don’t so much breathe the air around you as drink it.
It feels good to be back on the road—strange at first, but good. Being back in Bangkok, back at what was supposed to be the next destination of our trip, makes everything seem very surreal. My parents, my family, and my friends are once again thousands of miles away. I rely on Cassie the same way I relied on her throughout my hospital ordeal. She is my sounding board and my emergency plan.
Together we figure out how much insulin to take for meals, what to eat, when to snack, and all of the necessary processes that are now a part of my life. If something goes wrong and I pass out from hypoglycemia, she has a glucagon shot that she’ll stick into my leg. It’s a huge needle—big enough to throw as a javelin—encased in a bright red box that practically screams “Only for use when the shit hits the fan.”
One of my friends asks how it works. I open up the case and show her the needle, filled with a transparent liquid. She half turns away, afraid to even look at something that might draw blood. I remove the three plastic safety caps, two from the needle and one from the vial of powdered medicine I need to mix it with to activate the glucagon.
“Where do you inject it?” she asks, peering cautiously at the syringe.
“Straight into my iris.” I jab the needle toward my eye as she defensively posts her outstretched hand between herself and the needle, using the other hand to cover her mouth.
“No, no, it goes into my thigh,” I say, trying to reassure her before she gags.
It doesn’t take us long to realize that managing blood sugar on the road is a whole new ordeal we have to figure out. We are constantly active, walking all over whatever city we happen to find ourselves in, and we have to deal with the relentless heat on top of that. Over and over again in those first few days, my blood sugar comes in low when I measure it. My plan was to keep my blood sugar higher than normal—somewhere between 120 and 150 instead of between 80 and 120. Not dangerously low, but low enough that it’s alarming. My blood sugar is regularly in the mid-80s, which is only about ten points away from where it starts affecting me.
Different people suffer different symptoms from hypoglycemia. If my blood sugar drops too low, my hands start shaking. Gently at first, but if it continues dropping, the shaking is noticeable. As a makeshift way of checking blood sugar, I hold my hand out in front of me to see if it shakes. However, it’s not the best way to judge, since low blood sugar can make me a little dizzy, and it becomes hard to focus.
If my blood sugar drops into the danger zone, I start sweating profusely. Not just a few drops of sweat on my brow—every part of me begins to sweat. Sweat stains spread across my shirt; beads of sweat drip off my forehead. Once or twice, it b
ecame difficult to talk. I managed to formulate words in my head, but when I tried to vocalize them, the syllables came out all jumbled up.
There have only been a handful of times when I’ve ever gotten this low, and my immediate reaction is to consume anything around me that contains sugar—cookies, orange juice, Skittles; anything. It’s a race between me and my plummeting blood sugar, and to win, I have to eat as much sugar as is humanly possible in about five minutes.
We adjust my insulin levels as often as we have to, but I’m still powering through the Gummy Lifesavers I have as my emergency source of sugar. I buy whatever the local candy is so I always have some form of sugar with me.
At the end of each day, Cassie and I look over my blood sugar numbers. If they all fall in the healthy range, somewhere between 80 and 150, I draw a smiley face in my notebook. In the first few weeks are we back on the road, I stockpile very few smiley faces. But gradually my numbers improve, and my smiley face collection grows.
Bangkok is as exciting and alive as I remember it. The city is a boiling hot cauldron of sights and smells, only some of which I can identify. Street vendors are cooking up all sorts of completely unidentifiable meats, cars are stuck in traffic jams that stretch for miles (or rather, kilometers, now that we’re once again somewhere other than America), and the city is bubbling with an urban grit that is awesome to experience, even if it is the second time.
And so I dive into a bowl of spicy seafood soup as our first official lunch on the road. I am punished for my bravery. The food unleashes an inferno of pain on my taste buds, and I expect a similar magmatic sensation after my digestive system does its thing. I take big gulps of water to cool my mouth, which only spreads the spiciness out so it’s all over my mouth and lips. Everything hurts. The world hurts. And yet it’s so damn tasty. So I keep eating.
The Insulin Express Page 17
