Last week I attended a the three-day orientation in Washington, D.C. hosted by the organization giving me a scholarship to go to Estonia. One of the things I learned was that I need this disclaimer on future posts concerning the grant:

The views and information presented here are my own and do not represent the Fulbright Program or the Department of State.

And now…on to diabetes.

The purpose of the orientation was to prepare all of the grantees for the experience of living abroad next year. We had information sessions on medical insurance, the administration of the program, and the histories and cultures of our respective host countries. I was excited to be able to meet the other grantees going to Estonia next year. Two alumni who had just returned from their year in Estonia were also there, and gave us dozens of tips about living in the country.

For most grantees, the preparation at the orientation was theoretical. In my case, the orientation inadvertently provided some hands-on practice for living abroad with diabetes. During the three days I spent in D.C., I had a small taste of the challenges I’ll have to deal with when I’m much farther away from home–as much of a taste as it’s possible to have in a nice hotel with a very helpful staff.

Of course, a major difficulty was maintaining good blood sugar levels. As every diabetic knows, it’s hard to count carbs when you’re away from home, eating unfamiliar food, and resorting to estimates rather than measurement. (At least I recognized the foods I was being served….this might not always be the case in Estonia!) Since my total movement consisted of walking from my room to the elevator, and from the elevator to a conference room, I was also getting much less exercise than I do normally. My blood sugar was high for most of the trip. Still, I was glad that I avoided having any serious lows, which would have been a greater cause for immediate fear.

An unexpected diabetes-related situation arose soon after I had arrived at the hotel. When I had signed up for the orientation, I had requested a refrigerator in my hotel room for my insulin. After I checked in at the hotel, I went up to my room and met my roommate, another grantee. We chatted for a while, then we unpacked and ironed our clothes. It wasn’t until we were finished that I decided to put my insulin into the refrigerator–and realized that the refrigerator was nowhere to be found.

In a way, I wasn’t too surprised. There were more than a hundred people in our group, and several more groups in the hotel. It understandable that the staff couldn’t keep track of each and every one of the guests’ requests. I also wasn’t too worried; I assumed it would be easy to have a refrigerator brought up to my room right then. When I went down to reception, however, a staff member told me that refrigerators couldn’t be brought up to certain rooms. Without elaborating as to the reason why this was the case, he added: “If we can’t move a fridge to your room, we’ll have to move both you and your roommate to a different room where there’s already a refrigerator.” I wouldn’t have minded switching rooms, but it seemed unfair to drag my roommate along with me.

The staff member promised to call me once he found out about the refrigerator one way or another. When I hadn’t heard from him by the time I was ready to go out to dinner, I decided to go back to reception and ask again. I felt hesitant about doing this. Having worked in retail, I know how irritating a pushy customer can be. Still, I was worried about my insulin, and I figured that if my roommate had to switch rooms, it would be best for her to know sooner rather than later. On the second trip to reception, I spoke to a different staff member who explained that there was a shortage of refrigerators because so many people had been asking for them. “But,” he added, “since you have special needs, I’m sure we’ll be able to work something out.” When I returned to my room after dinner, a refrigerator had been placed under the desk.

This incident was minor, but it reminded me that I’ll need to keep several things to keep in mind when traveling. First, prepare ahead–and never be complacent about those preparations. Instead of waiting until the last minute to ensure my room had a refrigerator, I should have called earlier that day to remind the staff that I would need one. Then I should have checked to see if it was in my room as soon as I arrived at the hotel. I also shouldn’t have assumed that a refrigerator would be readily available. Unforeseen complications happen all the time, and a diabetic can’t afford to take risks when trying to obtain necessary equipment. The importance of being vocal and assertive about diabetes was also underscored for me. If I hadn’t been persistent and asked for a refrigerator a second time, the hotel staff might have forgotten I’d ever requested one. If I hadn’t explained that I was diabetic and needed the refrigerator specifically to store my insulin, the second staff member wouldn’t have thought to prioritize my request.

I’ve already acted on the lessons I learned at orientation and made some concrete preparations for managing diabetes in Estonia. My program put me in touch with the nurse at the U.S. embassy in Estonia, who has give me specific information about insulin availability in Estonia, as well as the contact information for a endocrinologist in the city in which I’ll be living. I know that situations will arise in Estonia for which I haven’t prepared…but at least I’ll do my best to prepare for the ones I can foresee.

The only movie I’ve ever seen in which diabetes plays a prominent role is Christopher Nolan’s 2000 thriller Memento. The protagonist of this film, Leonard, looses his short-term memory, but his diabetic wife thinks he’s faking. To force him to stop “pretending,” she asks him to give her an injection of insulin. He does so. A few minutes later, she tells him again: “It’s time for my insulin.” Leonard repeatedly injects her with insulin until she goes into a coma and dies.

image from www.wikipedia.org

When I saw this movie for a high school assignment, I hadn’t yet been diagnosed with diabetes, but my brother had. My mom made a reassuring assessment of the movie’s plotholes (Once Leonard has given his wife several injection, wouldn’t she finally realize he’s not faking his condition and drink some orange juice? If Leonard saw his wife going into a coma, wouldn’t he call an ambulance?) Still, I found the movie very disturbing. It reminded me that diabetics are constantly vulnerable, despite every attempt to manage their condition as well as possible.

After watching Memento, I’ve never felt the desire to watch another movie about a diabetic. This is partly just my taste; while some people find it comforting to watch movies that address their health issues, I’m usually more of an escapist–I’m not sure I’d seek out a movie about a diabetic character even if the portrayal wasn’t depressing. Still, watching Memento made me curious. Were there any other movies about diabetics?

My google search of “diabetics” and “movies” yielded a list from dLife.com of several movies with diabetic characters. From the accompanying short description of each, I found out that there are films with diabetic characters in all different genres. You can see the full list here.

In most thrillers, like Memento, diabetes is introduced as a fatal flaw for other characters to exploit. As you can probably imagine all too well, inducing hypo- or hyperglycemia in a diabetic is an effective way to put that character’s life in danger. In Big Nothing, an agent is killed when he is force-fed sugar by his nemeses. In The Panic Room, a girl has a seizure induced by low blood sugar while trapped in the panic room without her glucagon. In Con Air a convict’s syringes are destroyed in the middle of an airplane flight and the convict is unable to take a necessary shot of insulin.

Dramas also explore the hardships associated with diabetes, albeit less sensationally. The problems mentioned in many of these movies are ones with which many people, including me, can empathize. Bread & Roses portrays a woman in financial difficulties because of her husband’s diabetes. In Mad Money the protagonist’s coworkers mistakenly believe she’s a drug addict after seeing a syringe fall from her purse. In Chocolat (the one movie on dLife’s list I’ve seen besides Memento), Judi Dench plays a grandmother with diabetes. Despite pressure from her daughter to stick to a diet, Dench’s character secretly buys hot chocolate at the the newly opened chocolate shop in town. dLife includes a quote by Dench about the grandmother’s role in the film: “At the end, through the metaphor of chocolate, people are able to embrace a free lifestyle and sexual freedom and reject repression of all kinds. And that wasn’t available to the woman with diabetes. Well, it was, but at a price.” This price, eventually, is death. Nevertheless, the film isn’t moralistic. While the chocolate shop contributes to the deterioration of the grandmother’s heath, it also heals her emotionally and prompts her to take a new interest in her grandson and the other townspeople.

If the depiction of diabetics’ weakness in most films depresses you, you might appreciate the fantastical superpowers somehow attributed to diabetics in horror flicks. In Scarecrow Gone Wild, a diabetic boy goes into a coma and emerges as a scarecrow bent on taking revenge on the football players who’ve tormented him. In The Warlock, a syringe is a diabetic girl’s weapon of choice when she destroys the warlock. (Apparently an injection of salt water is lethal to warlocks. Who knew?) At least it’s gratifying that a character’s diabetes condition empowers her to defeat an evil character, and not vice versa.

I’m curious as to what other people think about movies with diabetic characters. Do you enjoy or avoid watching them? Are there portrayals of diabetics from certain movies that you find especially accurate or moving? Which movies with diabetic characters would you recommend to others?

A few months ago I wrote about Eva Saxl, a type 1 diabetic who managed to survive World War II in the Shanghai ghetto by making homemade insulin. After immigrating to the United States, Saxl became a spokeswoman for the American Diabetes Association. During the era in which Saxl lived, there was a serious stigma attached to having diabetes. As a result, most diabetics went to great lengths to hide their condition from others. Saxl’s willingness to speak openly about diabetes was revolutionary.

As I researched Saxl’s life, I was particularly struck by the mention of prejudice against diabetics–all the more so because it seemed removed from my own experience. Although diabetes isn’t my conversation opener of choice, I’ve never had a problem explaining my condition if I need to. Until recently, if someone had asked me if I felt the need to hide my diabetes, I would have thought: Why should I? It’s not my fault that I have diabetes, and there are many situations in which it could be important for other people to be aware that I’m diabetic.

A few days ago, however, my brother Julian and I discussed the fact that even though we aren’t embarrassed to admit we have diabetes, non-diabetics often make us feel as though we should be. Once, when I went to have blood drawn before an endocrynologist appointment, a nurse asked me if I had a phobia of needles. I joked that it would be tough if I did, since I had type 1 diabetes and needed to give myself several injections every day. “It’s so sad how young people are getting diabetes these days,” she said, and launched into a discussion of child obesity and the benefits of whole grain versus white bread. It took me a few minutes to realize that she wasn’t just discussing diabetes in general, but was trying to give me advice that she felt I needed. My brother complained that when people find out that he has diabetes, they often exclaim: “But you’re in such good shape!” or “You don’t look like you have diabetes.” Both of us have also encountered the shock of friends or relatives if we eat anything sweet, or the admonishing “Are you sure you’re allowed to eat that?”

Comments like these reveal some of the misconceptions that many people still have about diabetes. The nurse lectured me about healthy eating because she thought that bad dietary habits had caused my diabetes. People are surprised that my brother is fit and athletic because they assume that diabetics must be overweight. Most of these false impressions can be explained away with little effort. Nevertheless, they have the potential to be extremely irritating. Why are they able to make us feel guilty or defensive when we have nothing to be ashamed about?

When Julian and I thought about it, we realized that all of these misconceptions boil down to one assumption: that you, the diabetic, have brought on diabetes yourself. This belief–which seems to have persisted from Saxl’s time–allows the non-diabetic to take the moral high ground. Even if we correct a specific misunderstanding (such as yes, type 1 diabetics can eat dessert sometimes), it’s hard to counteract the underlying impression that the diabetic is somehow at fault.

With all of the advances in diabetes research, it might seem strange that this misconception still exists. I feel that part of the problem has to do with the lack of differentiation between type 1 and type 2 diabetes. Type 2 diabetes, unlike type 1, is in part based caused by factors like weight, eating habits, and lack of exercise. Because type 2 is much more prevalent than type 1, it’s likely that if a non-diabetic has any contact with a diabetic, it will be with a type 2 diabetic. It’s also inevitable that most advertising about diabetes products is geared towards type 2 diabetics. Even Oprah’s recent episode on diabetes focused mainly on type 2. Keeping this in mind, it’s hardly surprising that most people are unaware of the differences between the two forms of the disease. However, it would also be an oversimplification to make an equation like: type 1=not your fault, type 2 = your fault. Type 2 diabetes is in part triggered by a person’s habits, but many type 2 diabetics also have a genetic predisposition towards the disease.

Ultimately, no one should assume that any type of diabetic deserves the blame for their disease. But this fact isn’t widely understood by our society. It seems to me that the only way to counteract the stigmatization of diabetics is not to hide the fact that you have diabetes, but instead to follow in Saxl’s footsteps and openly correct misconceptions whenever you encounter them.

My dad has always wanted to grow a vegetable garden, and recently he’s started on a small scale by growing cucumbers, lettuce, and tomatoes in clay pots in his backyard. Then my mom bought him a stevia plant to add to this collection. My dad’s name is Steve, so it seemed like a fitting choice.

Stevia is also an appropriate gift for loved ones because its leaves are very sweet–about 30 times sweeter than table sugar. And unlike chocolates or candy hearts, stevia leaves contain no carbohydrates or calories. This is something that my diabetic brother and I, as well as my dad, can definitely appreciate.

Of course, I’m not the first one to notice the potential of stevia’s sweet but carb-free leaves. The name Stevia actually refers to an entire genus of herbs and shrubs; Stevia rebaudiana is the species with most of us know as stevia, sweet leaf, sweet herb, or honey leaf. The plant is native to Central and South America. It was originally used in Paraguay, not only as a sweetener, but also for medicinal purposes. In the late nineteenth century, the Swiss botanist Dr. Moises Santiago Bertoni undertook a mission to find a live specimen of Stevia rebaudiana, and eventually submitted the first detailed description of the plant. In 1931, two French chemists extracted one of the compounds, steviocide, that gives stevia leaves their sweet taste. However, it wasn’t until 1971 that stevia was produced and marketed commercially, by the Japanese company Morita Kagaku Kogyo Co., Ltd. Stevia’s popularity has since spread around the world, although in some countries it is banned or prohibited from being sold as a sweetener.

So stevia extract is ubiquitous as a sweetener and dietary supplement. But how did our family plan to use stevia leaves their natural, unprocessed form?

At first, we had no idea. My dad watered the stevia plant, let it grow, and waited for inspiration. Then I decided I would make a fruit salad to bring to the annual Memorial Day block party near my parents’ house. I usually like to put mint in fruit salads, but since the mint plant hardly had any leaves left, I decided to chop up a few stevia leaves and add them as a garnish instead. This turned out to be an excellent choice. The stevia added both extra sweetness and a mint-like tang to the fruit salad–without, of course, adding any extra carbs. The result was a delicious dish, especially refreshing in the summer heat.

One of the toughest things about being a diabetic is your relationship with sweet foods. It’s no secret that when someone is diagnosed with diabetes, they’re told to limit the amount of dessert they eat.

But the flip side of this is also true. At times, diabetics have to eat sweet foods when they don’t want to, i.e., when they have low blood sugar.

It might be hard for everyone to sympathize with this complaint. Yeah, right, a non-diabetic might think after reading this. I wish I sometimes had to eat a cookie. The problem is that even though diabetics have to consume sugar to raise low blood sugar, it’s not a guiltless pleasure. The sugar still has the adverse effects on your body and weight that it would with anyone else. Plus, lows often happen at times when you least feel like indulging in sweet foods. For example:

1. In the middle of the night. This is one of the most common times to go low. It’s also one of the times when you’re least likely to be craving something sweet, or even to be thinking about food at all. You don’t want to rouse yourself from peaceful dreams to go through your low blood sugar routine: scarfing down glucose tablets, waiting twenty minutes to make sure your blood sugar has risen enough, brushing your teeth, and, after all that, trying to get a little more sleep before your alarm clock rings.

2. After exercising. The last thing you want to do eat the calories you’ve just burned. If you’ve really pushed yourself in your workout, you might even feel a little nauseated. In psychological or psychical terms, it’s not a time when your body craves sugar.

3. After eating at a restaurant. Personally speaking, it’s more common for me to have high blood sugar than low blood sugar after eating a meal at a restaurant. I underestimate the amount of insulin I need because–of course–I don’t want to admit to myself how many carbs are actually in the food. Sometimes, though, a meal that will appear to be so high in carbs that I overestimate the amount of insulin I need. Two hours later, the realization that I consumed less carbs than expected would be a relief….except that I immediately have to eat those missing carbs in the form of glucose tablets. If I’m already full of a hearty meal and delicious dessert, it’s not likely that I’m in the mood for anything more.

So how can you make consuming sugar for low blood sugar less annoying?

Whenever possible, I try to eat something healthy to combat a low. Fruit or even fruit juice have more nutrients than glucose tablets, which contain only sugar. Even if I’m not in the mood to eat anything when I’m low, at least I don’t feel guilty if I eat something healthy. The problem with these options is that they’re hard to keep on hand. Juice boxes can be cumbersome and develop leaks. Fruit is perishable; you can’t keep it tucked in your bag for months in anticipation for the time you’ll finally need it. A piece of fruit also won’t raise your blood sugar as quickly as something made from pure sugar would. All too often, the choice is between glucose tablets and candy.

When I was first diagnosed with diabetes, my doctor warned me that the reserve of food I kept for lows shouldn’t be too tasty. Otherwise, I might be tempted to give myself a little extra insulin just so I would go low and “need” to eat some of the stash. I’ll be the first to admit that I don’t do a perfect job of  managing my diabetes, but I can say I’ve never felt this particular temptation. If I want to eat something extra after I’ve already given myself a shot for a meal, I just give myself another shot to cover it. So, if it’s a choice between sugar pills (which I find slightly disgusting) and chocolate (which I love) I’ll take chocolate any day. I figure that if I have to eat something unhealthy for my low, it might as well be something that tastes good. (Although I should acknowledge that chocolate, which contains fat in addition to sugar, is less heathy than glucose tablets.)

Ultimately, the best solution is probably to place a stricter limit on the amount on your daily sugar intake. If you happen to go low while sticking to this plan, you can eat something sweet with impunity. This isn’t the easiest route to go. In the back of your mind, you might think: But what if I don’t go low? I still deserve something sweet today! Try to look on the bright side: if you don’t end up needing to dip into your reserve of candy, you’ve been that much healthier for a day.

Does anyone else find themselves going low at times when you least feel like eating something sweet? What are your ways of dealing with this situation?

As I wrote in a previous post, I recently found out that I received a scholarship to study in Estonia for a year. Once my initial excitement at learning this abated, I realized that I hadn’t been given a confirmation postcard to send back or a telephone number to call. The only thing in the envelope besides the letter was a medical form to be filled out by my doctor.

Did the organization just assume that anyone lucky enough to get the grant would accept it? Well…maybe. But, as wonderful as the grant is, that seemed a little extreme. When I finally found the phone number of the organization online, the woman to whom I spoke told me that there hadn’t been any mistake. Before I could sign an agreement accepting the grant, the committee would need to review my completed medical forms to make sure that any problems I had could be dealt with in my host country.

Of course, the first thought that came to mind was: Will having diabetes prevent me from getting medical clearance?

When I think about it logically, I know it’s not likely that this will happen. Estonia is a fairly advanced country. There are hospitals and access to medical supplies in the university town where I’ll (hopefully!) be staying. Diabetes is also a common disease, so it’s safe to assume that doctors in most places will have experience dealing with it.

Nevertheless, the thought that diabetes could prevent me from taking advantage of an opportunity is jarring–even in the abstract. When I was first diagnosed, I was given the usual literature reassuring me that diabetes would never stop me from leading a normal lifestyle. And it’s true that in the two years since that time, I’ve hiked up mountains, swam, and travelled abroad for two weeks. Still, who knows what might happen in the future? It always makes me disturbed and slightly shocked to hear about other people encountering roadblocks because they’re diabetic–for example, Michael Aviad’s inability to get health insurance for the  Rotterdam Marathon. I think I have a good chance of getting medical clearance to go to Estonia, but do diabetics applying to less developed countries feel similarly confident?

Yesterday I had an appointment with my doctor to fill out the medical forms. She looked over the section that I had filled out, annotating some of my answers. (For instance, I had checked “yes” next to the box asking me if I ever have or have had swollen feet or ankles; since being diagnosed with diabetes, I’ve had some trouble with my left ankle swelling slightly. My doctor made a note next to this question saying that the swelling is minor and not at all incapacitating.) At the end of the form, my doctor wrote that my diabetes was well controlled on my current medication, and recommended me for the scholarship.

So for now, I’m keeping my fingers crossed for good news.

For everyone with a glucose meter, monitoring diabetes is quick and simple process. Within a few seconds after daubing a miniscule amount of blood on a test strip, the concentration of sugar in your blood pops up on the meter’s screen. The glucose meter is so small and lightweight that it can be carried to and from work, out to dinner, on vacation–or around the world.

Now imagine that instead of testing with a glucose meter, you had to go to a hospital or clinic every time you needed to test your blood sugar. You couldn’t travel from your hometown unless you were sure there was a medical facility near and en route your destination.

People with Maple Syrup Urine Disease or MSUD (named for the sweet odor it causes in patients’ urine and ear wax) are forced to live a restricted lifestyle similar to the one I just described. MSUD is an inherited disease that prevents the body from reacting properly to the proteins valine, leucine, and isoleucine. These three branched-chain amino acids are acquired through diet, rather than produced internally, but are essential to the body’s growth and functionality. Because of a mutation in certain enzymes, people with MSUD are unable to break down valine, leucine, and isoleucine, leading to a dangerously high buildup of those amino acids in their systems. If MSUD goes untreated, it can lead to lethargy, lack of growth, seizures, mental impairment, and death.

Managing MSUD is a delicate act. People with the disease have to avoid eating too much of the branched-chained amino acids; at the same time, they need to consume enough of them for their bodies and minds to develop healthily. The concentration of the branched-chain amino acids also needs to be measured frequently, and the fact that there is no quick way to do so doesn’t make life for people with MSUD any easier. As a diabetic, I would have no trouble testing my blood sugar twenty times a day (if for some reason I wanted to). By contrast, every test for a person with MSUD involves a time-consuming visit to the hospital.

A friend of mine works in a clinic that treats children with MSUD. Once, as he saw me test my blood sugar, he was stuck by a thought. Could the technology used to power the glucose meter also be used to create a lightweight, portable meter to measure the levels of valine, leucine, and isoleucine in people with MSUD?

After thinking it over, this is the conclusion he reached: A meter would need to use enzymes to break down each branched-chain amino acid. The only enzyme of which my friend is aware that would react with one of the amino acids would also react with the other two. This means that it could only be used to measure the total level of the branched-chain amino acids–not a very helpful piece of information, as it’s essential for people with MSUD to see the concentrations of each amino acid separately. Before an effective meter for people with MSUD could be produced, researchers would need to identify three different enzymes that would react individually with valine, leucine, and isoleucine.

Still, creating a portable meter for people with MSUD is theoretically possible. The chances of someone actually doing so boils down to a practicality: funding. Since more than half of the people in the United States have diabetes, pharmaceutical companies have a clear incentive to fund research for cutting-edge diabetes products. MSUD, however, only affects one person in 180,000. With such a low statistic, it seems unlikely that much money will go towards developing a meter for people with MSUD any time soon.

Still, in the future….who knows? Maybe one day the glucose meter will become the model for a tool to help people with a disease other than diabetes.

On Monday two things happened to me:

1. I had an appointment with my endocrinologist.

2. I found out that I received a grant to live in Estonia for a year starting in September (!)

They had more to do with each other than one might think.

Part of this was the timing: I was leaving my house for the appointment just as a postman was walking up to my door, so I took the letter right from his hands. The thrill of the good news overshadowed my anxiety about the doctor’s appointment, at least for the duration of the car ride there. (My blood sugar readings have been erratic recently, and I was afraid that my A1C results wouldn’t be so fantastic.) Still, the juxtaposition of the appointment and the letter prompted me start to thinking about the reality of living abroad with diabetes sooner than I might have otherwise.

And once I started thinking, I was overwhelmed my the amount of things I’d have to figure out before leaving the U.S. It’s true that I have some experience of managing diabetes in a foreign country–I travelled in Estonia and Latvia for two weeks this summer. But that trip was short enough for me to bring all my supplies with me, plus extra prescriptions from my doctor at home in case I ran out. Actually living in a foreign country will present a whole new set of challenges. What kinds of insulin and supplies will be available in Estonia? How will I find a good doctor? What will I do if there is an emergency?

At my doctor’s appointment, I also learned that I will have to deal with a new challenge from now on: eating gluten-free. In previous posts, I’ve mentioned that my brother is one of the many people who has both type 1 diabetes and another autoimmune disease, celiac disease. The only way to treat celiac disease is by eliminating all gluten–a protein found in wheat, barely, and rye–from your diet. Long before I was diagnosed with diabetes, I was tested for celiac disease. The doctors told me that the results were inconclusive.

I was more than happy to take advantage of this ambiguous diagnosis to continue eating gluten. On this visit to the endocrinologist, though, I had decided I would clear up matters once and for all: Should I go on the gluten-free diet or not?

My endocrinologist explained that the tests had shown that I had antibodies for celiac disease in my bloodstream, but they didn’t show the “gold standard” for diagnosis–damage to the intestines. Her suggestion was that I try to avoid eating wheat, barley, and rye as much as possible. Still, she said, it probably wouldn’t hurt for me to eat foods containing gluten every now and then.

For me, eating gluten-free at home is annoying, but feasible. After years of living with a brother who has celiac disease, I know where to buy gluten-free flour, and which brands of gluten-free crackers and bread taste the best. But trying to maintain a gluten-free diet in a foreign country will be more tricky. To begin with, I currently know a total of two words in Estonian (“hello” and “thanks”), so reading a list of ingredients on a package won’t be easy. To make matters worse, bread is an integral part of the Estonian cuisine–so much so that in previous times, “bread” was a synonym for “food.” There is even an Estonian saying: “have respect for bread; bread is older than we are” which conveys the reverence with which Estonian peasants regarded the food. Not exactly auspicious for someone on a gluten-free diet…or someone with diabetes.

Occasionally I think about the delicate nature of the system that keeps me, and all other diabetics, alive. Right now, I’m lucky enough to live in a place and time where and when all of my diabetic needs are met with alacrity. My doctors prescribe medications, my supplies are plentiful and of excellent quality, and they are delivered or given to me at the pharmacy on time. But what would happen if something large-scale were to threaten this system, like a natural disaster or war?

When I saw on my calendar that today is Holocaust Remembrance Day, I thought about the people with diabetes who were persecuted during World War II. Could anyone with diabetes have survived the Holocaust? The only answer seemed to be no. It would be hard enough for someone in hiding to obtain food, let alone sterilized medical supplies. And clearly, no one would bother giving insulin and syringes to inmates of a concentration camp.

I decided to do a google search of “Holocaust survivor” and “diabetes,” even though I didn’t expect much to turn up. To my surprise, I found a dLifeTV video describing the lives of Victor and Eva Saxl, which disproved my depressing conclusion.

According to the video and other sites, the Saxls were a couple who fled Nazi-occupied Prague during World War II and settled in the Jewish ghetto in Shanghai. Soon after their arrival, Eva was diagnosed with type 1 diabetes. At first, Eva was able to get her insulin legally, but when China’s Japanese occupiers began to close down pharmacies, this became impossible. The Saxls were leery of obtaining insulin through the black market, as one of Eva’s friends had died after injecting contaminated black market insulin.

So the Saxls made an incredible gamble–they decided to try to create “homemade” insulin. Following the methods described in a medical textbook, they managed to extract insulin from the pancreases of water buffaloes. They tested the insulin on rabbits, but couldn’t be sure that it was free of bacteria, or that its potency level would not be too high. Once Eva had tried the insulin herself and was sure it worked, the Saxls made more insulin–enough to supply all of the diabetics in the Shanghai ghetto.

The Saxls’ efforts to help others with diabetes didn’t stop once they immigrated to the U.S. after the end of the war. Eva became a spokeswoman for the American Diabetes Association. During the 1940s and 1950s, the general public was highly misinformed about diabetes, and as a result there was a real stigma attached to having the disease. Diabetics went to great lengths to hide their condition from others. Eva Saxl was revolutionary in her willingness to openly admit to having diabetes, and go so far as to make TV appearances to raise diabetes awareness. When Victor died, Eva settled in Chile and worked to provide supplies to underprivileged children there.

It seems amazing that not only were the Saxls able to escape persecution in their native country, but also that they managed to combat a different kind of prejudice and suffering in every other country in which they lived.

Here is a link to the video about Eva Saxl from dLifeTV:

I have never kept kosher for Passover. My family is of mixed Jewish and Episcopalian heritage, and not very observant about either religion. My experience of keeping kosher for Passover came through my Jewish classmates who, for one week out of the year, would bring peanut butter, jelly and matzah sandwiches to school instead of buying food at the cafeteria.

When my brother was thirteen, he was diagnosed with celiac disease, an autoimmune disease often linked with type 1 diabetes. The only way to treat celiac disease is to go on a gluten-free diet, eliminating all wheat, rye, and barely from your diet. That year, I was struck by the fact that people who keep kosher for Passover are required to give up almost exactly the same grains as people on a gluten-free diet. Both diets are quite stringent. Observant Jews must clean their houses before Passover to ensure that no remnant of forbidden grain remains; people with celiac disease also have to avoid consuming even the smallest amount of gluten. You can guarantee than anything kosher for Passover is also gluten-free.

Except matzah. Matzah is a thin, dense, cracker-like food that observant Jews eat on Passover to evoke the unleavened bread eaten by Israelites as they escaped Egypt. It’s the only food containing wheat, barley, spelt, rye or oats that can be eaten on Passover.

I’ve always assumed that Passover would be an easy time of year for observant Jews with celiac disease. They would simply avoid matzah (or foods made of matzah meal, like matzah ball soup) and pile their plates high with everything else on the table. But in fact this isn’t the case. As I did some research for my matzah review, I discovered that observant Jews aren’t only allowed to eat matzah on Passover–they’re required to do so. So what is an observant Jew with celiac disease to do?

I thought it must be possible to buy gluten-free matzah. Since gluten is the protein that allows wheat-containing foods to rise, the problem with most gluten-free substitutes is that they are much denser and flatter than the foods they imitate. This lack of fluffiness wouldn’t detract from matzah, which is by definition unleavened. So I set out to find a gluten-free matzah to include in my matzah review.

This was a more difficult task than I’d thought. I first called Mr. Ritt’s Gluten-Free Bakery in New Jersey, where my parents buy most of their gluten-free products. Mr. Ritt told me that he had decided not to stock gluten-free matzah this year because there was little call for it in his store’s new location, but he did know of two companies that did make it. One of them charged $30 for one box. (Gluten-free products are often more expensive than their gluten-containing counterparts, but even so, this is steep.) The other company was less expensive but unreliable in their deliveries. Neither of these options sounded viable, so I tried calling my local supermarkets. Finally, I spoke to one employee who told me her store carried gluten-free matzah. I rushed to the market…only to find that the matzah in question was made of spelt, a (sub)species of wheat which is definitely not gluten-free.

There are some companies that sell gluten-free matzah online. I couldn’t order from one in time to receive the matzah for my article, but doing so would certainly be possible if you prepare far enough in advance. Still, if you have celiac disease and can’t find a gluten-free matzah before next year’s Passover, don’t panic. The requirement to eat matzah at a Passover seder is waived when it poses a real threat to one’s health.