The Harmless Killer

We walk into the room and my jaw drops. Other conference attendees had said we would be staying in suites, but I had thought they would just be regular rooms. But we were, indeed, staying in a suite, with a small kitchen, table, couch, and TV separated from a bedroom and huge bathroom.

"They must have gotten us a really good deal," I comment as I dump my luggage near the door and look around.

From the other side of the room, my roommate examines the contents of the kitchen counter. "Wow, expensive wine!" she exclaims. A few minutes later, she roots through the basket of goodies. "Chocolate bars ... almonds ... Pringles—there's stuff here that would kill both of us ... Oh—Fun Dip! I remember those! Have you ever had those?!"

Diabetes is a major part of my everyday life, but it's not the only condition that affects my relationship with food. I have lived with diabetes for almost 22 years, since childhood; but there is another condition that I have lived with for longer and that, in many ways, has had a much bigger impact on my attitude towards food.

I don't remember when I first became aware of the fact that I had food allergies and that most other people didn't. I know that my parents suspected a food allergy since the time I was an infant, although it took years for them to pin down exactly which food it was. My first memories of restrictions are from when I was six or seven years old. I remember being offered ketchup chips and refusing. When we ate out at McDonald's, my brothers got fries while I went without. I remember reactions, too, but neither I nor my parents connected them to any particular food at the time. I had episodes of waking in the middle of the night itching, covered in hives, and episodes of facial swelling that made my eyes swell nearly shut. The antidote for these was Benadryl, cold compresses, and baking soda baths, and my parents wondering what the trigger might be. Unbeknownst to me at the time, they carried an EpiPen on my behalf (which I had never heard of in the '80s), and doctors speculated that either potatoes or nuts were the culprit, so I avoided both.

Few people without food allergies understand the fear associated with it. Those of us with diabetes are careful with food ... but we don't fear food. Accidentally eating a pinch of sugar is not going to send us into diabetic ketoacidosis. But imagine if it did—if that's all it took, a pinch of sugar. One accidental scoop of sugar in your coffee and that's it—hospitals, monitors, IVs. For people with food allergies, that's the reality. It was around the age of nine or ten, if memory serves, that I had reactions that caused me to fear some foods.

My first memory of potatoes leading to a direct reaction came at a church-run event where international students prepared food for us to eat after the service. It was before diabetes came along, so perhaps I was eight. Our table had a Japanese student who prepared a dish of rice and vegetables. I I remember my mom inspecting my plate as I began to eat. As the student walked by, she waved her over and pointed at something mixed into the rice. "What's that?" she asked.

"Potatoes," the student answered.

My mom turned to me instantly and told me to stop eating. I quickly put my fork down. I had only eaten some of the rice. "I've never heard of potatoes in Japanese food," I heard my mom comment to my dad after the student had left. "We'll have to get her something later."

As they continued talking, my dad suddenly interrupted. "Look at her face," he said, looking over my mom's shoulder at me. I wondered what was wrong with my face. My right eye was itchy and watery, but that was all the discomfort I felt. When my mom looked over, she saw the right side of my face swelling, my right eye nearly swollen shut. She insisted we leave, despite my protests that it wasn't that bad.

Around the age of nine, shortly before I was diagnosed with diabetes in my hazy timeline of events, I suddenly didn't like my mom's Yorkshire pudding anymore. I told her, too, but she didn't really believe me at first. I couldn't quite explain why I disliked them, but told her they made me feel wheezy. They also made my mouth and throat feel funny. She continued to serve them at meals, though, and I would often take one bite to satisfy her and leave the rest. Eventually, she stopped trying to make me eat them. Some time later, she realized that she was cooking them near the potatoes. We already knew that I couldn't be near cooking potatoes—in a kitchen or fast food restaurant—without feeling wheezy. We used to visit friends for Christmas dinner every year, and I didn't even like that because I always felt wheezy around the dining area where potatoes had been cooked and served. My mom changed her cooking habits, but I never liked Yorkshire pudding much after that. Other foods were to follow: stews, soups, gravy. I am wary of eating these foods to this day, even when someone who knows about my allergy  makes a safe version.

I experienced my first severe reactions in my pre-teen and teenage years, both due to peer pressure from friends to eat food. The first that I remember was when I was about 11 years old. I was at a friend's house and she was trying to convince me to try some of the stew her parents had made last night, since she was warming some up for herself. I tried several times to refuse, but after several minutes of cajoling finally gave in. My friend promised to make sure that there were no actual potatoes in the forkful she gave me.

I ate it quickly and handed it back, hoping nothing bad would happen. But it didn't take long for me to feel a reaction starting. Within half an hour I was in the bathroom, doubled over with my stomach writhing. My friend called through the door, asking if I was okay. I felt itchy, and wheezy, and sick, and miserable. I didn't know what to do. I didn't want to tell her, but I also wanted her to see why I had been right about not eating the stew. I told her that I was sick and needed my parents.

When I was about 13, I had a similar incident. I was at another friend's house while her family had dinner. I declined, mostly because it wasn't a planned snack or meal time for me on the insulin regimen I was taking at the time. She insisted that I try a few bites, and when I asked if it had potatoes, she said yes. I declined again. She said I didn't have to eat the potatoes, just try some of the chicken. After her parents joined in trying to convince me to eat just the meat, promising there would be no potatoes, I reluctantly gave in.

After eating, we went for an evening walk. As we walked, I could feel the reaction starting. I said nothing, and was grateful for the darkness. I could feel my throat tighten, could feel my back crawling with hives, could feel the prickling heat of my lips and face swelling. We walked further, and the further we got from her home, the more anxious I felt. I asked if we could go back, my words feeling awkward through my swollen lips, and she said we would go a bit further and then turn back. When we finally arrived back at her home, she reacted as soon we stepped in the door and light flooded the hallway. "What happened to your face?!"she shrieked, calling for her parents. I said it was from the dinner, and asked them to call my mom. The next thing I knew the phone was in my hand and I was asking for Benadryl and my inhaler. The planned sleepover that night came to an abrupt end.

The good to come of these experiences was that my friends stopped trying to cajole me into eating potatoes. A potato allergy is a difficult allergy to have. Almost no one has heard of it, even most doctors, and then there's the already existing confusion between food allergies and food intolerances. Since it's not anywhere close to being one of the top allergens (things like peanuts, tree nuts, shrimp, eggs, milk, and so on), there are no labelling requirements (and probably never will be), meaning that potato can easily be hidden in foods. Food allergies can be difficult for people to understand. How can something so harmless to one person kill the next? How can something as small as a peanut or potato chip cause such a disastrous reaction?

Even though I refused food from friends, I soon learned that even adults couldn't be trusted. My first year at a summer camp for visually impaired teens, my mom wrote on the registration form that I was allergic to potatoes. Despite this, I always checked what was on the plate before eating. One night, we got served roast beef and potatoes. I told the staff I was allergic and they took my plate away, returning a few minutes later with a new one, sans potatoes. I knew within a few minutes of beginning to eat that something wasn't right. I ran to my room, got two Benadryl, and gulped them down with some water when I returned to the table. I sat there picking at my food, hoping that the Benadryl would take effect and prevent the reaction from getting bad, feeling my lips swelling and my back itching. I  listened to all the other campers talking and laughing, not caring abut anything, and wished I was one of them.

When I realized that this was going to be a bad reaction, I excused myself from the table early and went to my room. I curled up on my bed and stayed there for hours, alternating between trying unsuccessfully to sleep and running to the bathroom. I was miserable ... and told no one. At one point my roommate came in and asked what I was doing. I told her I was tired, and was secretly grateful that she couldn't see what my face looked like. By the time it was lights out, my stomach was finally calming down and the itching and swelling was fading, but swallowing still felt strange when I woke up the next morning.

As a teenager I did not carry an EpiPen. I did not know what anaphylaxis was and did not really know that food allergies could be life-threatening. This was mostly because I had never been officially diagnosed since I had never gone to the hospital during a reaction, and it wasn't until my late 20s that I was tested and the allergy confirmed by a doctor. After the reaction at camp, I got much stricter about avoiding foods, and refused to eat anything that had caused a previous reaction, like stew and soup and meals that were prepared with potatoes, even if I wasn't eating them directly. I refused even if an adult said it was okay, unless it was my parents.

I also learned that potato starch was in all kinds of foods I hadn't expected. Crackers, ravioli, fish sticks, and rice chips. I discovered this initially by eating foods, having my mouth and throat itch, and then checking the ingredients. After the first few instances of this I began reading ingredients on everything, and telling all restaurant staff that I had an allergy when I ate out. I continued to have one or two reactions a year, but now the mistakes were minor enough that the reactions were not severe at all—little more than an itchy mouth and throat, maybe some minor lip swelling or wheezing. During all this time I continued without carrying an EpiPen, and I did not think of my allergy as that severe—certainly nothing compared to peanuts!

In 2008, I was attending a conference where lunch was served. I had put "severe potato allergy" on the registration form, and assumed that this would be sufficient (teenage-trusting-lesson apparently being forgotten). When the plate was put in front of me I dug in with barely a glance. The fork was nearly to my mouth when I heard someone beside me shout STOP! I froze and looked around. It was one of my closest friends sidding beside me. "That's a potato!" she said, sounding panicked. I looked back at my fork. What I had assumed to be a piece of apple or pear was, in fact, a slice of potato. And I had nearly eaten it. Given how violent my reactions to tiny amounts of potato were, I was almost certain eating that slice of potato would have killed me. Fortunately, I had no reaction to speak of thanks to my friend's actions.

That incident scared me enough that I went to my GP, explained my allergy and symptoms, and got a prescription for an EpiPen. Suddenly, I felt a lot more relaxed eating foods that others had prepared, and especially eating out. In the following years, I had a few small reactions, but nothing major. Last year, while in Las Vegas, I nearly ate a bun made with potato flour. It was pure chance that I found out before biting into it. I was glad for the EpiPen I always had with me, just in case. Still, in the back of my mind, I thought maybe I was over-reacting. I had never had to go to the hospital for a reaction, and I was still alive. I hadn't had a severe reaction in so long; I wondered if maybe I could actually eat a potato chip without something horrible happening.

I thought that way until two nights ago. Two nights ago, I almost used the EpiPen. I should have used it, or at least gone to the hospital to let them decide.

A few nights ago I had stayed late at work to help run a youth event our office was hosting. There were food and drink for the teens, and after cleaning up at the end of the evening the remaining food was divided up among the staff. I brought home a container of tortilla chips. "Don't eat chips from the yellow bowl," I had been warned before the event started. Our office has several staff members with severe food allergies, so there is a great deal of caution and exchanged warnings around food. This evening, the tortilla chips were in the white bowl, the potato chips in the yellow. I didn't eat many of them, and did not eat any of the dip once people arrived and began dipping tortilla and potato into the same containers.

Two nights ago, I decided to have a few of the chips I had brought home. I did not even think to double-check. I picked a chip off the top and bit off a small piece, planning to eat them as "mini chips" to make a few chips last longer, as I usually do for my blood sugar.

As soon as I tasted it I realized it wasn't a tortilla chip. I examined the container and discovered that someone had dumped the few remaining potato chips into the larger container of tortilla chips. I dropped the chip I'd just bitten on top and the entire container went into the garbage. A few of the youth had stayed after to help clean up, so perhaps it was one of them who had mixed the chips together, or perhaps a staff member who did not then see me volunteer to take the container home.

I didn't think too much of it. For the first five minutes, I felt fine. I was sure I would have some sort of reaction, but I thought it would be minor, as usually happened with accidental contact. Some itching, maybe some wheezing. Yet, I had never actually eaten potato in years. I had a few close encounters with fries that I spit out immediately, but beyond that potato starch was it.

Five minutes after eating the piece of potato chip my mouth and tongue and throat became intensely itchy. Minutes later, my entire face itched. I still didn't think much of it, but I did take a Benadryl. I was typing on my computer a few minutes later when I noticed the palms of my hands itching. I rubbed them on my pants, and then went to wash them. The itching just intensified, and was joined by my armpits and some other areas of my body far distant from my mouth or face. My face, at this point, was itching even more and blazing with heat.

Over the next 20 minutes the reaction exploded. My chin, forehead, and then entire face and ears began to swell. I looked at myself in the mirror and saw that my entire face was flushed bright red.  The itching spread to my entire scalp, then spread down my neck to my chest and back. I was nauseated, and kept feeling like I had to go to the bathroom to throw up. My heart was racing. Calm down, I kept telling myself, calm down, you can still breathe. I could still breathe—but my throat itched, swallowing felt funny, and I could feel myself beginning to get wheezy.

I felt like my body was completely out of control. My body was completely out of control—my immune system mounting a full-scale nuclear attack on a few potato proteins. I sat with the phone in my hand, debating whether to dial 911. Maybe I need my EpiPen, I thought, maybe I really do need it ... I was terrified the next step in the reaction would be me passing out or my airway closing.

In hindsight, I definitely did need the EpiPen, or at least some emergency medical attention and monitoring. In the end, I didn't use the EpiPen or call 911. I took another Benadryl, used my inhaler, and sat with the phone nearby in case things got any worse. I concentrated on not itching the hives that covered half my body, somehow thinking that scratching them might make things worse. I did not want to call my parents or my friends because I didn't want to worry them. I did not want to call 911 because I didn't want to cause a scene or spend the night in the hospital. I was not thinking rationally at all.

I was lucky. The reaction did not get any worse, and after an hour or so it began to slowly fade. At this point I called one of my best friends, who has a tree nut allergy. In a shaking voice I told her what had just happened. Her first question—after asking several times if my breathing was okay—was why I hadn't used my EpiPen. I don't have a good answer for that, and if I ever have another reaction I will not hesitate to call 911.

A few weeks ago I was volunteering with some colleagues at a trade show where we were handed packages of trail mix. The two people I was working with, one of whom was the same person I attended the conference with a month ago, were both allergic to nuts, so I ended up with all three packages. Tonight, I decided to try one of them. I was positive that trail mix would not have any potato in it, but feeling extra-paranoid due to the recent reaction, I stuck the package under my video magnifier, zoomed in on the low-contrast black text on red background, and squinted through the hard-to-read capitals:

INGREDIENTS: PEANUTS, RAISINS, WALNUTS, CASHEWS, SUGAR, DRIED CRANBERRIES, HONEY, PEANUT OIL AND/OR VEGETABLE OIL AND/OR HYDROGENATED VEGETABLE OIL, SALT, MODIFIED POTATO STARCH, CORN MALTODEXTRIN, XANTHAN GUM, NATURAL AND ARTIFICIAL FLAVOURS [CONTAINS MODIFIED CORN STARCH, GUM ACACIA, CARROT JUICE, MOLASSES, RAISIN JUICE CONCENTRATE, CITRIC ACID, PROPYLENE GLYCOL ALGINATE, COLOUR, BARLEY GLUTEN], BHA, TBHQ.

I stared at the package in disbelief, thankful I had read its ingredients. I put the packages aside, adding trail mix to the list of foods that could contain potato starch. I e-mailed my colleague and joked that, like the hotel room food, we'd been given a package that could kill both of us. I asked if she knew of anyone else at work who would enjoy them ... and find them harmless.

The Quest, the Request, the Plea

In early fall of 2006, I sat nervously in the waiting room of my endocrinologist's office. This was it. This was the day I had finally decided that I wanted to get an insulin pump, and was finally going to get up the nerve to bring the idea up with my doctor.

I had spent months preparing for this visit. I had done online research, read manuals, talked to people who already used the pump, brought the issue up with my diabetes educator, and contacted the pump companies. All the usual things that most prospective insulin pumpers do. My hesitation, however, was not the idea of going on the pump, but whether I would be able to safely use one.

My biggest concern was being able to safely program the device. The screens had tiny, low-contrast fonts that I had seen online and was sure I would not be able to read in person. When I saw several pumps at our hospital's diabetes clinic, my suspicions were confirmed. Holding the device a centimetre from my eyes and squinting with the backlight on, I was unable to even guess. I visited my optometrist who specializes in patients with low vision and explained my predicament to him. Using an MP3 player with a similar type of screen, we found a strong magnifier that helped me see most of what was written there, although I still had to take a guess at some of the numbers.

I consulted with other insulin pump users who were blind, some of whom had no vision. I read articles about compensatory techniques. I learned that the touch/audio bolus feature on most pumps were accessible, but that aside from that, most of the advantages of using a pump—variable basal rates, extended boluses, temporary basal rates, bolus calculators—were out of reach. People and articles said that the mechanics of using a pump, such as filling cartridges and changing sets, were no problem to complete without sight, and not having access to on-screen information was the biggest hurdle. I discovered that memorizing menu layouts and counting button presses were important strategies that were widely used. When I was finally convinced that I would be able to use a pump safely, between memorizing menus and using a magnifier, I brought it up with my doctor.

Not surprisingly, my endocrinologist was extremely excited about the idea of a pump. In fact, I had never seen him so excited as he was at that appointment. At the same time, it also became clear why he had never mentioned the subject before I brought it up. "How would you use it?" was the first question he asked after I brought up the idea. "They have very small text. Could you see the screen?"

I told him that I had done my homework, had seen several pumps in person, and that I could see the screen with a magnifier (I didn't add, "If the lighting is right, and as long as there are no 6s and 8s I have to distinguish"). After discussing the issue for a few minutes he was willing to sign off on the idea. The issue of my being able to safely use the pump was his one and only concern, and a legitimate concern given that a mistake while using a pump could be potentially fatal. "I think you will do very well on the pump," he said as the appointment wound to a close. "I would have recommended one for you years ago, but I thought you wouldn't be able to use it." I left the appointment with mixed feelings of excitement and anger. I had been struggling with my blood sugars for years, and my endocrinologist had held off recommending something that could help simply because he thought I wouldn't be able to use it. I was angry at him for assuming, but I was also angry at the insulin pump companies for making a product that was inaccessible.

The insulin pump is not unique in its inaccessibility. Among diabetes products, and among electronic products in general, it's the rule rather than the exception. Every day I and millions of others with visual impairments encounter products we can't use independently, save for memorizing sequences of button presses and hoping no error message pops up to interrupt the flow. Every time I use my microwave, printer, oven, or thermostat; every time I use a point of sales device, ticket vending machine, fitness equipment, or apartment buzzer system, I encounter inaccessibility. Every time I consider the purchase of a new device, my first and foremost consideration is accessibility. Or, failing that, ways to work around inaccessibility, which for me either equates to holding the screen at odd angles a centimetre from my face as I squint through a strong magnifier, asking for help, or, failing those, pressing random buttons and hoping one of them works.

Anyone who knows anything about blindness-related organizations can tell you that they don't always get along very well. Squabbles about service delivery, funding sources, and mission statements abound. The history of blindness is filled with interesting tales including such conflicts as the "War of the Dots" that surrounded the standardization of braille. But the one thing they all do agree on, whether they are a service provider, consumer advocacy, or not-for-profit organization, is the need for products to be designed for accessibility. The quest for accessible products is the one issue that has seen groups band together in protest and advocacy for a unified cause.

The concept of universal design—that products be designed in such a way that they are usable by the widest audience possible—has long been more theory than practice, but with technological advances there is little reason that universal design features can't be included in most, if not all, products. Shortly after starting on my first insulin pump, I was fortunate to come across a study of new insulin pump users, which I signed up for. Confidentiality prevents me from revealing any details (and they wouldn't reveal to me which company was conducting the study), but my experiences as a new pumper, and my comments regarding the pump's features were collected over the course of several months. I had experiences, thoughts, and ideas each week that I documented, but with every submission I put the same request, regardless of my other experiences: I wanted a pump that could talk. I also documented experiences of missed alarms and incorrect boluses, that were primarily caused by me not being able to see the screen, and that could have been easily prevented. These days, with years of experience behind me, I don't make these mistakes as often, but they still happen on occasion.

I see frequent calls within the online diabetes community for better diabetes products. I admit that I rarely read these, and even more rarely participate. More precise insulin delivery and a lower price tag I can concede to; but smaller, faster, prettier, sexier? I just don't care. The only thing I want is diabetes devices that are accessible. The few times I have piped up in discussion threads I tend to receive responses with all kinds of excuses as to why accessibility wouldn't be possible; it would make devices too bulky, too expensive, too ugly, too annoying. It's understandable that people wouldn't consider accessibility an important feature when they themselves don't currently need it; but, to me, accessibility will always be my top priority and my top request.

Recently, there have been some glimmers of hope in the area of electronic devices and accessibility for people with visual impairments. The first glimmer of change came with some companies that made a handful of accessible products such as talking microwaves and voice recorders. Then, in 2009, Apple added accessibility features to the iPhone, including a screen reader (VoiceOver) that enables people with low or no vision to use the device. Not only was the idea of a totally blind person using a touchscreen device mind-boggling at first, but the fact that this feature was included in a mainstream device was revolutionary. Soon, the call for universal design exploded, with advocacy groups lobbying companies such as Amazon, Microsoft, and Google to follow Apple's example. Slowly, very slowly, other companies have been following suit.

A few days ago I got an e-mail with news that the latest update to the Kindle app for iOS is accessible with VoiceOver. I literally jumped out of my chair in excitement. I felt like the floodgates had opened. Years of advocacy efforts by groups and individuals—including an e-mail to Kindle Support from me several months ago, lamenting the lack of VoiceOver accessibility (which I like to think helped in some small way towards this outcome)—and it was finally here. Suddenly, over 1,000,000 books previously inaccessible, were accessible! (When you consider that less than 5% of printed material is available in an accessible format, 1,000,000 books is absolutely huge!) I went home that night and read. And, despite a thesis to work on, I've been reading ever since. Books that had previously taken me hours of time to scan were available in an instant; what a refreshing change. (Apple's iBooks have long been accessible; maybe it's just the type of material I like, but most books I wanted to read I could never find on iBooks but could find on Kindle.)

I am hopeful that it is only a matter of time before diabetes companies start taking accessibility seriously. These days pumps and CGM devices routinely transmit data between devices, and there is no reason in my mind why the OmniPod, for example, couldn't have several different PDM devices—the regular one, one with speech output, and one for people with mobility or fine-motor issues. Or, even better, Animas could build their Ping meter to have a "Turn speech output on" option it its Setup menu, and have cases or skins that could be put on the meter to make gripping easier and buttons bigger for those who need these types of accessibility features. The ability for some meters to communicate with the iPhone provides other tantalizing possibilities. It's all a matter of creative thinking, and most of all, recognizing the importance of these types of features.

I send e-mails to companies on a fairly regular basis to let them know that their software or hardware is not accessible, give them some pointers to resources, and offer to help in any other way I can. Unfortunately, the requests often go unanswered. With mainstream devices, a request is one thing. With medical devices, especially ones as potentially life-changing as glucose meters, insulin pumps, and continuous glucose monitors, the request often turns into more of a plea. There have been numerous calls—many times now—for diabetes devices that are accessible and safe to use for people with visual impairments. And, there have been some slow signs of improvement. Mostly, though, those of us who have diabetes and a visual impairment are faced with squinting, memorizing menus, and guessing ... or not using them at all.

I can only hope for the day when I will open a new insulin pump or CGM device and have it talk as soon as it starts up. Some days, most days, it seems like the cure will probably come first (and we all know how far off that promise has been). Other days, when I find myself picking up and using the same cell phone and apps all my colleagues are using, or the day I find myself downloading an accessible copy of a book the same day my friend recommends it, I catch a glimmer of hope.

The Worst Advice, Ever

As I sit with my aunt in a downtown restaurant, perusing the menu and catching up while I'm in the area for a few days, my aunt launches into a story involving me in a candy store as a child. "We didn't know you were diabetic yet—I think we were trying to kill you!" she interjects as she unravels the tale. Later, as she reads the menu to me, I think aloud about what I feel like eating, debating between a burger and a salad. "Why don't you get the salad?" she asks. "Wouldn't that be safer for your diabetes?"

I choose the salad. I'm not used to that word, "safe", being used in the context of diabetes, only in the context of food allergies. But it does aptly describe the situation.

When I was growing up, after I had been diagnosed, my diet suddenly became very restricted. I wasn't allowed to eat any foods substantially high in sugar or starch. The words, "Can I eat this?" left my mouth before anything entered it, and this habit lasted well into my teens. I was allowed occasional treats, but these were carefully incorporated into my meal plan and often invariably resulted in high blood sugar. Not that I cared much, though my mother certainly did. I stood by once as she told a story of me begging to have some sugary treat as a child, and my aunt looking on and saying, "Why don't you let her have it just this once?" My mom's reply was that if she let me eat that food now I would get sick later.

Yet, she also let me experiment myself at times, too. The initial reaction to my diagnosis was to ban all sugar from the household, even for my non-diabetic siblings. That ended several months later when my brother (quite earnestly) asked for Apple Cinnamon Cheerios for Christmas. When they began eating foods that I couldn't, I still didn't really grasp why I wasn't allowed to eat the same food. I didn't think anything terrible would happen. Still new to diabetes, every morning I would plead for some lightly sweetened cereal (we were never allowed to eat the pure sugar stuff, even before diabetes). So, one morning in exasperation my mom told me that I could eat whatever I wanted. I dug into a bowl of cereal. That same day at noon my teacher called home when my blood sugar clocked in at 30.5 mmol/L. My mom showed up at the school and then called my pediatrician; we hadn't seen such a reading since my diagnosis. But at least I finally had an understanding of why I couldn't eat whatever I wanted.

This early understanding carried me through my childhood and teenage years. Before a multi-day field trip in my final year of elementary school, my mom spent hours at our (then uncommon) computer, typing out medical information for the school staff. She filled pages of instructions and notes regarding allergies, asthma, blindness, and most of all diabetes. But in the course of these notes she also wrote: "Jen is very responsible about her diet and can tell, based on her blood readings, what would be acceptable to eat and what would make her readings high." The sentiment is repeated again on a summer camp application during my final year of high school: "Jen needs to eat sugar-free food—she knows what she can and can not eat."

Aside from the outdated notion of "sugar-free", I often wish my skills of discernment and refusal were as keen as they were in childhood.

In high school I suddenly had independent access to food through the student-run convenience store and the vending machine. I did "cheat" on occasion, of course, and used to knowingly lie when my mom asked me why my blood sugar was high at dinnertime. (I found out years later she was fully aware of my supposed deception.) Yet, food allergies and diabetes kept me from eating much of the junk food being sold, and for the most part I didn't feel tempted by sugary or starchy food. I didn't really remember ever having it, so I didn't feel deprived even when friends around me ate it. Of course, there was the equally adhered-to understanding from them that I just couldn't eat some of the stuff they ate.

In my mid-20s that all changed. Along came Lantus, carbohydrate counting, and finally the insulin pump in short succession. I was told repeatedly by diabetes educators and doctors that I could suddenly eat (and I quote) "anything I wanted." To this day, I consider this to be the worst advice I have ever been told, and I wish I had never been given it. I wish, instead, that medical professionals had told me to stick to my usual diet, and instead of having an A1c in the 7% range I would be able to achieve one in the 6% range.

But that's not what happened. And, when you tell a 20-something university student that they can eat anything they want, that's exactly what's going to happen. I told all my friends. Every time we discovered something I had never had before—a milkshake, a sundae, an extreme dessert, a type of candy or chocolate bar—I would give it a try. I tried all kinds of baked goods and desserts that had been off-limits for years. All very good-tasting, all very high in carbohydrates and, despite taking extra insulin, most apt to make my blood sugar high. But I didn't care. I'd been given "permission" by my doctor to do it, so why wouldn't I? And this continued for years, until I realized that I had become overweight and also realized that I actually did want to get my A1c down into a good range.

Food isn't all of it, of course. Type 1 diabetes is hard to control even when all variables are held constant. But food is one aspect of the environment that is controllable—unlike weather, stress, hormones, or viruses. When I was a kid I remember handouts with diagrams of a triangle connecting the three most important factors to consider in blood sugar control: food, exercise, and insulin. Somehow, over the past five to ten years, food and exercise had faded into the background and insulin (and its ability to be adjusted for food) has taken centre stage.

People everywhere advocate for that fact that there is no diabetic diet. People with diabetes can eat anything. Recently, I've begun to wonder whether this is such a good thing. I understand the sentiment—it should be a lifestyle, not a diet; people can eat anything if it's in moderation; everyone with diabetes is different, so there is really no standard diet. But in terms of a mindset, being told you can suddenly eat anything you want after over 15 years of restriction ... and five years later discovering that, if you truly want good control, "eat anything" isn't quite true ... is a tough pill to swallow. Of course, these days there is less of a need for meal plans and strict diets, but "eat anything" seems at the other extreme of the spectrum, and there must be something else doctors can tell patients that is more of a middle ground.

The hardest part about "going back"—even part way back—is that, while my aunts and parents still remember the old days, my generation doesn't. Most people my age, be they friends or acquaintances, don't accept a simple "I can't eat that" or "I don't want to eat that' as an answer. They coax and argue, and even though it's not their intent, they make it very difficult to say no sometimes. "Why not just this once." "You work so hard the rest of the time, take the night off and celebrate!" "Can't you just take insulin to cover it? That's what my other friend with diabetes does." "Come on, a small bit won't hurt." (I would rather not eat it at all than just eat a bit.)

It's hard to put up a fight against these arguments, especially when multiple people come after me multiple times about the same food, or put a plate of cookies right next to me, or shove a plate with a cupcake into my hand. It's hard for them, too, because they don't see any consequences on the occasions that I do cave and eat something that I know is going to make my blood sugar high. And, of course, there's the fact htat years ago I made a big deal about the fact that I cuould eat anything I wanted. In moments of stress, tiredness, busyness, excitement, or relaxation in a social environment I find it hard to convince myself that I shouldn't eat some foods; instant gratification in that moment seems worth the high blood sugar later. It's no wonder my defense seems even weaker to others.

Lately I have tried to make a point of mentioning, after eating something that I know I shouldn't, that my blood sugar is high and that I shouldn't have eaten X. But it's not the same as seeing someone keel over or get sick. As a kid, when it was nearly impossible to keep blood sugar in range even with 110% effort, I spent many days at school with roller-coaster blood sugar. I never complained or used it as an excuse to get out of something unless I was low. I went to my first summer jobs, university, and eventually professional employment with the same attitude. I may feel tired or thirsty when my blood sugar is high, but I generally keep quiet about it, and as a result I generally ignore the symptoms myself and don't notice them much. Sometimes I've even found myself wishing that I was more affected by high blood sugar than I am, just so others would understand why I "can't eat" a certain food. Or that my glucose meter had an alarm that would go off for a high reading, like a CGM does, just so others would take note. I have tried in vain to explain the relationship between blood sugar and complications, and most simply do not understand.

In the end, I need to learn to simply refuse to eat foods that I know tend to make my blood sugar high, even if those around me don't understand. I sometimes wonder if the myth of a diabetes diet is such a bad thing. The other day a group of seniors was using a room in our office for an event, and they offered me a lemon tart when I walked past. My response of, "No, thanks, I'm diabetic," garnered an argument from no one. Simply, "Oh, too bad," and they moved on to the next employee passing by.

Such a nice change, for once. It would be great if all responses were so understanding.

Perils and Possibilities

Travelling has always been something of a mixed bag for me. I hate the tasks of packing and catching planes, of booking hotels and scouting out local amenities. Once I'm at my destination I am able to relax more, but I am still always glad to get home, and if a trip drags on too long (which, for me, isn't long) I find myself longing to get back to familiar territory. I used to travel a fair bit as a kid, on camping trips, road trips, and cross-country flights to see relatives. But these were always organized by adults and I was always accompanied by them, meaning I simply got to relax while they got to do all the organizing and worrying.

It's hard for me to tell how much of my aversion to travel is related to my personality—maybe I just haven't been bitten by that travel bug yet—and how much is due to other factors, like my tendency to worry about the worst case scenario.

When I was 16, I heard about a camp for teens who were blind and visually impaired run by CNIB, and decided that I wanted to go. Up until then, I had never been to a summer camp before. My parents knew about the CNIB camp as well as the diabetes camp, but were reluctant to send me to either when I was younger, for fear that the CNIB camp would know nothing about a child with diabetes and that the diabetes camp would know nothing about a child with severely impaired vision. My brothers had never been to any summer camp, either, so it wasn't a big deal until I asked to go. And so, my parents made a deal with me that if I learned to use an insulin pen (fairly new at that time) and learned how to adjust my insulin (R and NPH at the time) independently, I could go to camp; and when I accomplished both of these, they signed me up.

The night before I left for camp, I had a nightmare that I forgot my insulin and had to go home and it ruined camp for everyone. But the next day my parents came with me to the camp to meet the staff and counsellors and brief them on diabetes. When they found that one of the staff members had Type 1 diabetes they immediately relaxed, and shortly after left me to experience the week of adventures. I had a mixed experience that first year at camp: I enjoyed the activities, but I didn't really make any friends (everyone else had been going for years, it seemed), and medical stuff—including my blood sugar running sky-high all week and experiencing two allergic reactions—prevented me from relaxing completely.

My second year at camp, at age 17, was a little better. That year, I truly connected with other campers and, by the end of the week, I didn't want to go home. But I still experienced an allergic reaction one night at dinner; I still had to stock extra food in my room so that I could eat snacks between meals and before bed; and, one night, I gave myself a shot and then could not remember whether I had just given myself Toronto (regular) or NPH insulin. I freaked out and used the one and only pay phone to call my mom, trying to muffle my tears. She talked to the counsellor in charge of first aid, but I didn't get much sleep that night because I was afraid of going low and my fear that the camp counsellors didn't truly know how serious that could be. My camp experience was probably not as relaxed as most!

Later that summer, I travelled with a friend and her family to a somewhat remote cabin several hours from home. Imagine my horror to find that, this time, my pre-travel nightmare almost came true. I had packed for the short trip independently, and when I went to take my pre-dinner shot the first night there, I discovered that I had remembered everything except needles. I had insulin, but no way to deliver it. Three hours of phone calls and driving finally led us to a pharmacy where we managed to pick up a box. I ran into a public bathroom stall to take my then-very-late NPH. While I was doing this, I heard my friend outside say to her mom, "I can't imagine having to do that, having to be so responsible!" and her mom—who I am grateful to for not freaking out over this entire incident—replying matter-of-factly, "Well, she has to do what she has to do."

The next year, at 18, I went to a three-week-long program for college-bound youth with visual impairments that was located across the country. Before leaving, my mom spent hours helping me pack, going through checklists of medical supplies. Insulin? Both types? Insulin pens? Needles? Glucose meter? Test strips? Alcohol swabs? Logbook? Food? Inhaler? Benadryl? Medic Alert bracelet? Extra of everything? Check, check, check, and double-check. In the end, I had a suitcase of clothing and another suitcase of medical supplies and food.

The night before I left, I had my usual nightmare about forgetting insulin and ruining the trip by having to come home. When I got to the airport—an accomplishment, I felt, being my first independent plane trip—I met the program staff, and when I got to the university dormitory where we were staying, I put all my supplies away. Then, the first night there, the staff discovered that they didn't have any cheese, which they had said they would have. I had no protein to eat for snack, which was a necessity on NPH insulin at the time. After scrounging around for an hour someone produced a nasty-tasting hunk of cheese, but I grimaced and ate it. At least it was something. I made a note to self to always make sure to bring everything I needed from then on, and not rely on anyone else.

The rest of the trip was a blast. For the first time, I felt like I could almost relax. Not completely—I did experience an allergic reaction after eating at a restaurant one night, and experienced a handful of lows. But my blood sugar did not run ridiculously high for the three-week program, although considering that there was an emphasis on physical activity in addition to learning career- and academic-related skills, that was not surprising.

Since those first few semi-independent trips as a teenager I have had many more travel experiences for both pleasure and business. Each trip, however, was still accompanied by the backdrop of worry. Travelling independently, the issue of getting around a strange city with a visual impairment, of making sure you make connecting flights and find the hotel, have become additional sources of worry. But in every case, trips have been successful. I have truly never had a horrible travel experience. I've just never been able to shake that nagging worry and what-ifs that run through my head each time I pick up a suitcase.

During this past year I have begun taking business trips on a regular basis, and with it, have begun feeling almost at ease with travel. At some point in recent years, the forgetting-insulin nightmare faded from my pre-travel repertoire. Going on the insulin pump went a long way toward allowing me to relax while travelling, as well as freed me from the need to bring an entire food suitcase. At some point, I found myself thinking of places I would like to go to—a train trip across North America, to New York, to London, on a cruise—and asking friends if they would like to plan something.

In talking to others who travel, those whom have been bitten by the famous travel bug, I hear recounts of amazing sights, new experiences, and changed perspectives. And it's something I'm beginning to feel as if I would like to partake. Seeing Nat Strand win The Amazing Race (the only season of the show I have ever watched) gave me even more inspiration.

Maybe I will become a traveller yet. Not quite now, but soon.

As I sit here packing for a business trip, I still feel as if half my luggage is medical supplies and adaptive equipment. Infusion sets, pump cartridges, batteries, insulin, insulin pen and needles, alcohol swabs, glucose meter and test strips, lancing device and lancets, glucose tablets, granola bars, inhaler, antihistamines, EpiPen, other miscellaneous medications, as well as doctor's notes, Medic Alert bracelet, white cane, video magnifier, sunglasses, and monocular telescope are among the items I check and double-check, and if need be pack extra. I still leave feeling as if I've forgotten something—and usually I have, a comb or floss or an AC adapter for some non-essential item. Not since that trip back in high school have I forgotten something truly vital.

I think that my mind will always want to be prepared for possible worst-case scenarios. I'm just like that with everything, and one of these days, it will pay off. Like everything, though, travel is a learning experience, and the only way you learn is by stepping outside your comfort zone. When I was younger, the perils of travel often seemed to overshadow the possibilities it offered. Now, slowly, the possibilities are beginning to outshine the perils.

6 Things I Wish Everyone Knew About Braille

On World Diabetes Day, November 14th, I posted about 14 Things I Wish Everyone Knew About Type 1 Diabetes. Today, January 4th, is World Braille Day, and in honour of that I've written a post about 6 things I wish everyone knew about braille. The number 6 is in honour of the 6 dots that make up a braille cell.

1. Braille is not a language. Braille, like print, is a code; the only difference between the two is that print uses lines and curves on a page while braille uses arragnements of raised dots. Just as different langauges are represented in prnt with different arrangements of lines and curves, different langauges in braille are represented by different combinations of dots. You do not need to learn a different grammar or syntax to read and write braille, because it's the same as whichever language it is representing. Someone who speaks Spanish will not be able to read Russian braille, and someone who speaks English will not be able to read Chinese braille, because just as with print, these langauges each utilize their own braille code.

(1.5. Since braille is not its own language, it should not be capitalized like English and French but should remain uncapitalized like print, unless in reference to its inventor, Louis Braille.)

2. Braille can be used to represent anything that print can represent. There are braille symbols to represent most spoken languages of the world, symbols to represent mathematics and scientific notations, symbols to represent computer code, and symbols to represent musical notation. There are even braille symbols to represent the International Phonetic Alphabet. Not all braille readers know all of these symbols, just as print readers can't necessarily read mathematical equations or music scores or computer code without special training. Although it's not quite fully automatic, there is computer software out there that will translate text, math, and music symbols from print to braille using a flatbed scanner and braille embosser.

3.Technology enhances braille. It's a prevalent myth that advances in technology somehow make braille obsolete. This is totally untrue and, if you think about it, totally ridiculous. It's like saying technology has made print obsolete. Sure, technology may change the way people read (in braille or print), but it certainly doesn't replace literacy. Technology has made braille more available than it's ever been in the past. No more punching out dots by hand or waiting two years for a novel to be produced in braille. These days, an individual can scan and OCR a print book and read it on a braille display within hours (assuming it's not a complex book such as a textbook, in which a transcriber is still invaluable).

4. Braille is not excessively hard to learn. Someone can learn the basics of braille in a matter of minutes, and can learn the entire code in a matter of weeks if they apply themselves. Of course, it may take more time to become a skilled, fluent reader ... but this isn't any different than becoming a skilled athlete, musician, or professional. It is not amazing that someone who has read braille for years may be able to read at several hundred words per minute. This is the same speed someone who has good vision would read print ... saying it's "amazing" sets lower expectations (a topic for a whole other post!).

5. Braille is not only for people with no vision. For people with low vision, using braille does not mean giving up print. It's not a choice, it's the best of both worlds! There are many people with low vision who use print when it's convenient (when they are near a CCTV, for example) and use braille when it's convenient (when they are chairing a meeting, for example). Many people view braille as some sort of last resort, when it should really be viewed as an extra tool in the toolkit and a skill that may not be needed all the time, but may come in very handy when it is needed.

6. Braille is vital for literacy. For most people who are sighted, this makes sense; this last point is directed at those of you with visual impairments and also educators and policy makers. People who can't read large print and can't read braille are unable to be fully literate. It is not possible to fully or easily access spelling, punctuation, grammar, poetry, foreign languages, mathematical or scientific equations, charts and diagrams, or musical scores fully without the use of braille. Speech access and recording and playback devices may get someone by, but I don't think it's truly possible to be literate relying on these technologies alone.

(6.5. You do not need to learn fully contracted braille for it to be useful and enhance/enable literacy. Learning the alphabet, punctuation, and numbers can be a huge enhancement to daily life, and all refreshable braille displays can display any material in either contracted or uncontracted braille, so there's no need to wait until all the contractions are learned to start reading interesting material! For new braille readers, it's very important to find ways to use braille in everyday life—this is the only way to increase skill; if you don't use it, you'll eventually lose it.)

I'm a huge advocate of braille and braille literacy, and this post only scratches the surface of what I could say about it. Still, I hope it helped you gain some understanding of braille and debunk some common myths and misconceptions.

How Do You ... Get Around?

This is the third installment in my series of posts called "How do you ...?" designed to answer some questions I frequently get about living as someone with a visual impairment. The first two posts in this series covered how people with visual impairments use computers and how people with visual impairments read. Future posts will include how people with visual impairments manage diabetes, how people with visual impairments accomplish everyday things around the house like cooking and cleaning, and (newly added thanks to a reader suggestion!) how people with visual impairments participate in exercise and sports. If you have any ideas or questions that I can cover in future posts, please comment!

Getting around a busy urban environment. For people who are losing vision, getting around is probably the most scary aspect of the process. For people who have low vision, using a white cane is probably one of the most psychologically-ridden decisions they can make. And for people who aren't blind or visually impaired, getting around is probably the aspect of daily living most shrouded in myths and misconceptions. Do people develop super acute hearing as they lose their vision? Do they count their steps to get from Point A to Point B? Should I (as someone who is sighted) help when I see someone with a white cane standing at a street corner? Do guide dogs automatically lead their handler where they need to go?

In this post, I will answer all of the above, and give you some insight into how people navigate indoors and out with little or no vision.

First off, no one who is blind or visually impaired is handed a white cane and told to go out on the streets and hope for the best. Just as someone with a spinal cord injury will get rehabilitation services, someone who is visually impaired has access to a plethora of rehabilitation services. The exact system varies by country, and there are ongoing controversies about how services should be funded and delivered (right now, in Canada at least, all vision rehabilitation services rely on non-profit organizations, which is far from ideal). One of the specialists encountered will be an orientation and mobility (O&M) instructor. An O&M instructor will teach someone the skills needed to know where they are and stay oriented in the environment (orientation) as well as the skills necessary, and the use of any necessary tools such as a white cane or monocular, to navigate safely through that environment to get from Point A to Point B (mobility).

(I will note here that I am not an O&M instructor. If you happen to be reading this as someone who is blind or visually impaired, please seek the services of an O&M instructor to learn how to travel safely. Do not take this post for any kind of professional advice!)

So, without further ado, I'll get on to how some of this stuff actually works.

First off: orientation. Right off the batt I'll tell you that people who are blind and visually impaired do not have any kind of enhanced hearing, smell, taste, or touch. People with visual impairments use these senses more, and so we gain more practice in paying attention to them, but that's it. Anyone could learn to feel braille dots or hear the flow of traffic on the street if they practiced enough, most people just don't have the need or interest to do so.

The built environment is so visual that many people think it must be impossible to navigate non-visually. In keeping oriented, people with visual impairments use many non-visual cues. Rather than visual landmarks, people with visual impairments rely on sound, tactile, olfactory, and kinesthetic landmarks and cues. Sound cues are easy to pick up—the sounds of traffic letting you know you are approaching a cross street, the sound of squealing brakes letting you know the bus has just pulled up to the stop you've been waiting at, the sound of a fountain letting you know you have reached the front doors to your office building. Tactile cues and landmarks can be found with the tip of a cane or with a hand or foot. A technique called "trailing" involves running the back of a hand along a wall or other surface to locate an object such as a water fountain or display case.

An O&M instructor will teach different "cane techniques" for use in different situations. The standard "two point touch" is what you see when someone is walking down a street rhythmically tapping their cane back and forth in cadence with their steps. Other techniques allow the cane user to get more information about the texture of the surface they are walking on, or to scan to the left and right of the path they are walking on to look for intersecting paths or other landmarks such as fences or signposts. When walking up or down stairs, the cane is held in a specific position so that the user will know a step or two ahead of time when they are about to reach the top or bottom of the staircase. These are all various types of tactile cues and landmarks.

Olfactory cues are something everyone notices when they are good—the smell of bread from a bakery, the smell of popcorn at a movie theatre—but most people don't notice much on a daily basis. The next time you talk a walk down a city street with stores, take note of all the smells! A clothing store and shoe store and hardware store all smell very different. Smells may not be the most-used sense in O&M, but it can definitely provide some useful information a bout where you are and when you may have reached a landmark or destination.

Kinesthetic landmarks include things involving movement, like going up or down a ramp or sensing that a street is curving slightly to left. When I was first learning to take the bus to school as a preteen, my cue that the bus was coming to my stop was that it came up the crest of a hill and levelled off right before it stopped. (I didn't realize until I was in my late 20s that people who are sighted can actually read street signs to tell where to get off the bus. I fiured most of them used landmarks like me, except smaller visual ones, to tell when to get off, and didn't realize that they could actually know their exact location at any given time.)

Of course, most people with visual impairments do have some degree of residual vision, and therefore in addition to everything listed above can use their vision in staying oriented in the environment and navigating from place to place. This vision may be anything from the ability to tell where in a room a window is to being able to see crosswalk lines to being able to see traffic signals to being able to read street signs with low vision devices. For those who have enough vision, magnification devices such as monoculars (basically small telescopes) are available that allow viewing things like street signs, traffic signals, and bus numbers from a distance.

Speaking of residual vision, the white cane is often one of the biggest hurdles for people with vision loss. Picking up a cane feels (at first) like accepting defeat, relenting to a disability, admitting that you are blind, and shouting to the world that you are (at least perceived as) vulnerable. It is a HUGE psychological hurdle, perhaps even the biggest hurdle in the adjustment process. Many people with low vision do something called "passing" where they pretend to see much more than they actually can. They walk down the street carefully watching the movements of people ahead of them to figure out when a curb or flight of stairs is coming. They pretend they forgot their glasses when handed a sheet of printed paper they can't read. They nod and say thank you when someone gives them directions, even though they have no idea where "the yellow sign over there" might be. Often, they accept that they may look foolish or oblivious, because (to them) that is preferable to looking blind.

In reality, the cane should be seen by society as a symbol of independence. A cane signifies confidence, strength, independence, and freedom. People do not need to be totally blind before they will benefit from a cane. For those of us with low vision, a cane identifies steps and curbs, helps in situations where lighting is not ideal (which happens a lot), and communicates easily to others that we can't see well. There may be misconceptions we have to deal with, but it's better to deal with them and educate people than to hide and pretend we're something that we're not.

The process of O&M is so complex that it's nearly impossible to explain in a blog entry. Developing good O&M skills may take months or years, and the skills needed differ a bit by each individual depending on where they want to travel, their confidence level, and their level of residual vision. Simulation activities can give a better idea of what it's like to travel with a visual impairment, but these are used with caution because they tend to invoke a reaction of fear ("Wow, I cant believe how scary that was!") which is not the point. Of course, travelling with impaired vision may be scary at first, but it wears off over time. I am no more scared going out and crossing the four-lane, advance green (in Canada, this means a left turning lane), very busy intersection in front of my apartment building than anyone else would be. I just rely on slightly different information to tell when it's safe to cross; like the sound fo parallel traffic moving, the audible pedestrian signal sounding, the sound of cars in my path stopping, and whether other people are walking (although I never rely on another person walking as a sign that the light is in my favour).

So, you ask, what about guide dogs? Rather than learning all this stuff about different senses and white cane techniques, why not just get a guide dog and let them do all the hard work.

Well, the short answer is because guide dogs don't work that way.

A guide dog takes commands from their handler and then guides them around obstacles. The commands aren't broad ones, like "Take me to Starbucks." Instead, they consist of "forward," "left," and "right," among some other school-specific commands. Some handlers teach their dogs to find certain things like elevators and empty chairs. But beyond that, a handler still has to know where they are in the environment and has to know how to give their dog detailed directions to where they want to go. Where the dog helps is avoiding obstacles (instead of contacting them with a cane and having to negotiate around them), as well as avoiding overhead obstacles which a cane can't detect. A dog will also stop at curbs, stairs, and other changes in elevation. A dog doesn't help with crossing a street—the handler has to listen to traffic and give a "forward" command when it's safe to go. A dog is trained, however, to block a handler's path if they misjudge and attempt to step out into moving traffic (ditto if the handler should ignore the dog stopping and attempt to step off a flight of stairs, or step in front of a moving train, and so on).

A person goes about getting a guide dog by applying to a guide dog school and, if accepted, going away to live for a month on a campus where they will be paired and trained with a dog. The dog, by the way, already has the training by the time they meet their handler; they are raised by volunteer puppy raisers and are returned to the school for formal training when they are still fairly young. The month-long training at the school is for the handler's benefit, so that they can learn the commands and how to work with and care for their dog. Some schools also do home training. Although training a guide dog is expensive (thousands of dollars), there is usually only a minimal or no cost to the trainee. Most guide dog schools run entirely on donations.

Guide dog schools make a point of emphasizing that a dog is not a substitute for good O&M skills and good cane technique. In order to be accepted into guide dog training, a person who is visually impaired needs to already have solid white cane and travel skills. Schools interview applicants and make them run through a test route with a cane and with a mock dog (where the interviewer is at the other end of the harness) before they are accepted into training.

The decision between cane and canine is sometimes a heated debate among the blindness community. In the end, both methods have their pros and cons. A cane is low maintenance, doesn't get sick, and doesn't incur any cost. A dog requires daily care, financial resources, and a guide dog handler is often never left alone in public (as someone who used a guide dog for several years, I can attest to this!). For some people, getting a guide dog is a life-changing and life-enhancing decision. For others, a cane works just fine (in case you're curious, I myself do not plan on getting another dog in the foreseeable future). Interestingly, while most of the general public may think the majority of people with visual impairments (and particularly those who are totally blind) have guide dogs, the actual proportion of legally blind people who are guide dog handlers is well under 5%.

Hopefully this entry has given you some glimpses into how people with low vision or blindness navigate through the world. In case you are wondering about some ways in which you can help (or hinder) a traveller who is visually impaired, here are some quick tips:

• Feel free to ask if someone with a white cane or guide dog needs help, but be prepared to back off if they politely decline.
• Never grab someone's arm in an attempt to guide them, especially without asking them if they need help first.
• If someone does request assistance, ask if they would like to take your arm (many people will have enough vision to simply follow you).
• A guide dog is a working dog, distracting them is like someone distracting you while you're driving.
• Never talk to or pet a guide dog while it is working, and especially never touch its harness in any way.
• If you are a driver, never blare your horn at someone with a visual impairment; it's startling and confusing since they likely have no idea what the honking is all about, and they may be standing at a corner not crossing simply because they are trying to figure out what type of intersection they are at by listening for the flow of traffic
• If giving directions, give specific directions (either cardinal or left/right) rather than using terms like "over there" or pointing, which have no meaning if you can't see

On a last note, you might have noticed a conspicuous lack of technology in this post. Unlike using a computer and reading and writing, orientation and mobility still relies on relatively old-fashioned tools of white cane, guide dog, and optical low vision aids. However, devices such as GPS units designed specifically for those with visual impairments (the Trekker Breeze being one example), electronic travel aids that warn of overhead obstacles, iPhone and other applications that are accessible to screen readers, and electronic aids built into the environment (such as audible pedestrian signals and talking signs) are all technologies that can help. Some of these, like GPS, are becoming relatively established, while others, such as indoor navigational aids (a challenge as GPS doesn't cover indoor environments) are still emerging. Regardless, navigating with a visual impairment will likely always remain relatively low-tech.

14 Things I Wish Everyone Knew About Type 1 Diabetes

There are many misconceptions and misunderstandings about Type 1 diabetes. In honour of World Diabetes Day (November 14), here are 14 things that I wish everyone knew about Type 1 diabetes.

1. Type 1 diabetes is an autoimmune disease, just like multiple sclerosis and rheumatoid arthritis (among many others). In Type 1 diabetes the immune system attacks and destroys the insulin-producing cells in the pancreas. There is no way of preventing Type 1 from developing.

2. There is no cure for Type 1 diabetes. Insulin is not a cure. Without insulin, people with Type 1 die, and ninety years ago--before insulin's discovery--it was a universally fatal disease. Insulin allows people with Type 1 to stay alive, and that's it.

3. Type 1 diabetes is a continuous balancing act. Imagine trying to manually control your temperature or heart rate all day, every day. It must respond and change throughout the day, but not too high or too low or you die. That's exactly what people with Type 1 are doing with their blood sugar.

4. Type 1 diabetes requires constant vigilance. There are no days off and no vacations, ever. Times when most people get time off—like parties or when they're sick with the flu—are times when people with Type 1 have to work twice as hard to stay safe.

5. Type 1 diabetes takes a lot of work. It's not only the blood tests and a healthy diet. Someone with Type 1 makes a diabetes-related decision every couple of hours throughout the day, and often several times during the night as well.

6. Type 1 diabetes is serious. Out of the dozens of diabetes decisions made during each day, it takes one wrong decision (or one wrong guess) to end up in a life-threatening situation. And that's not even counting the long-term complications all people with diabetes are at risk of developing.

7. Controlling Type 1 diabetes is largely guesswork. It is virtually impossible to take account of every factor that influences blood sugar, many of which—hormones, stress, even weather—people have little to no control over. Having "perfect" blood sugar control is impossible.

8. Someone with Type 1 diabetes can do everything "right" and still have high and low blood sugar levels. Even a blood sugar that is wildly out of range may not be anyone's fault and may have no known cause. And these "random" blood sugar levels are routine—not extraordinary—occurrences.

9. Type 1 and Type 2 diabetes are completely different diseases. They share a name and high blood sugar as the primary symptom. They are challenging in different, though occasionally similar, ways. But the genes, cause, often treatment, and definitely cure are vastly different.

10. Exercise takes a lot of effort for people with Type 1 diabetes. Going for a run or a swim may take literally hours of preparation and follow-up monitoring and food and insulin adjustments to manage blood sugar levels. Exercise is good, but it's not as simple as it may appear.

11. People with Type 1 can eat anything, but it may take an incredible amount of work. Like exercise, it may take hours of monitoring and dosing insulin after certain foods. Sometime people may feel like putting in this effort to eat a treat, and sometimes they may not feel like doing it.

12. People with Type 1 diabetes require nutritional information for foods. It is required in the same way that people with food allergies require ingredients before they can eat. Without it, people with Type 1 are making a wild guess about how much insulin they need to take.

13. The insulin pump is just another (more precise) way of delivering insulin. It does not automatically regulate blood sugar levels or insulin. It requires constant programming and monitoring, and only delivers what the user manually programs to be delivered.

14. Type 1 diabetes is often as much an emotional struggle as a physical one. Imagine taking a lifelong course you didn't want to sign up for, working hard at it every day, and only getting a C on the exam. Then repeating it all again next semester, forever. That's what Type 1 often feels like.