Thursday, May 30, 2013

Just Different

"If you could have just one thing wrong with you, would you rather be blind or have diabetes?"

We had been driving for several hours, family and gear packed tightly into the car, coasting through the winding, rural roads on one of our sporadic yearly camping trips. The usual entertainments—books, Game Boys, colouring, walkmans, sightseeing, sleeping—had worn thin, and thus my brother's question popped through the silence.

My answer took a split second, but only a second. "I'd be blind," I said.

My brother was taken aback. "Why?!" His disbelief came through in his one-word question. "I think being blind is way worse than diabetes," he added.

"I don't," I said. I was a kid, though, and struggled to answer his question of why I would rather be blind than have diabetes.

My mother piped up from the front seat. "Jen's been blind her whole life," she said. "She's more used to it. And when you're blind, you don't need to prick your finger or take shots." I appreciated my mom's help, and my brother seemed satisfied, if still a bit disbelieving. The conversation turned to other topics as we neared the camp grounds. My mom had gotten the answer partly right, and the part she had missed was something I couldn't yet articulate.

That question has stuck with me throughout the years, though it had not been asked of me again in my memory. I have since seen this type of discussion occasionally crop up on diabetes forums and mailing lists, comparing diabetes to other diseases, discussing which complications are the worst, or debating whether Type 1 or Type 2 diabetes is the greater burden.

I think it's all a moot point. It's impossible to compare one disease or life experience to another as being better or worse. First, there's the problem than "better" and "worse" are completely subjective, and second, most of these are things that just can't be compared.

As an adult, I'm better able to articular what I couldn't as a child about why I said I would rather live with blindness than with diabetes. If given a choice, I'd rather live with neither—but I say that mostly out of convenience. Being able to drive, or pick up a printed page and read it, would be much more convenient than relying on a white cane, public transit, and assistive technology. Being able to pack lunch without the use of a food scale and calculator, or go through the day without the fear of when the next low might hit, would give me a lot more free time and a lot less stress. In reality, however, both of these circumstances have helped shape who I am today—and I'm not sure I would eliminate either.

My mom was partly right when she said that I picked blindness because it's what I was used to. But there was more to it than that. Blindness doesn't carry with it the future uncertainties that diabetes does. I don't feel threatened by it in the same way. It's not going to kill me while I sleep. It doesn't leave me wondering in the back of my mind if this may be the time I can't handle the situation on my own while treating a reading of 1.8 or 28.8 on my glucose meter. It doesn't cloud my future with fears about my health and quality of life. Even as a kid, I understood that diabetes posed dangers to my daily life and to my future that blindness did not.

For me, at that time in my life, diabetes was worse than blindness

Blindness does present its own challenges, and had my parents not been such strong advocates, I might have seen more of society's attitude early on. As it is, it wasn't until college and my first application for employment that I began to understand the ramifications of living with impaired sight in a sighted world. But mostly, from my perspective problems with blindness are caused with the way things are designed and with the attitudes of individuals and societies, and so it's not a big deal to me. If I was one of the large number of blind individuals currently unemployed or had grown up with more negative experiences, I might feel differently.

Which just goes to show how much of these types of arguments are a matter of perspective. People tend to fear blindness a lot, whether they have diabetes or not. Studies have shown that Americans fear blindness more than cancer, HIV, heart disease, or stroke, and that U.S. adults with diabetes feared blindness more than premature death. I find these statistics sad and slightly disturbing, though not really shocking. I've seen enough reactions, in person and online, professionally and personally, to know that most people are very, very scared of blindness and the idea of a child living without sight is about as tragic as it gets.

In the end, though, these two entities aren't really comparable. Diabetes poses a greater threat to my life than blindness. Blindness poses a greater social and attitudinal barrier than diabetes. Both of them cause some degree of daily nuisance. Some days it's having diabetes I hate, and other days it's being blind. Some days it's something completely different, like being allergic (which itself is usually seen as "no big deal" by many people).

Everyone faces different challenges in life, and it's silly to compare them. For some people their challenge is growing up in poverty, for others it's struggles with mental health or emotional issues, for some of us it's living with chronic illnesses or disabilities or both. Is it harder to face these challenges as a child or an adult? Is a childhood filled with the restrictions and fears of Type 1 diabetes worse than having to make major lifestyle changes and facing complications upon the diagnosis of Type 2 diabetes as an adult? Is a childhood of having to work twice as hard as peers and never knowing the beauty of sight worse than the life-altering impact of vision loss later in life? Is having either of these conditions, in a country where technology and supports are available, worse than living healthy and non-disabled in a war-torn country?

Who can really answer any of these questions? In the end, it's probably mostly up the the individual person living the experience as to whether their life is horrible or wonderful. Any opinions without experiences are just assumptions.

The one conclusion I can say for sure is that, for me, being alive is better than being dead. Yet others, perhaps those more religiously inclined than I, may have a different opinion on this matter. No one experience is more valid than the other. In the end—and I think this is something we all struggle with sometimes—if all the energy we spent on comparing different conditions as "better" or "worse" or "more deserving" or "less deserving" was spent realizing that all these people have struggles and need supports, just in different ways, the world as a whole might be a more inclusive and empowering place.

Tuesday, May 21, 2013

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. 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 I was an infant, although it took years for them to pin down exactly which food I was reacting to. 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, and doctors speculated that either potatoes or nuts were the trigger, 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 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 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, staring over my mom's shoulder at me. I wondered what was wrong with my face. My right eye was itchy, 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 and get Benadryl, 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 puddings 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. As we loitered in my friend's kitchen, talking while she ate some leftover stew her parents had warmed up, she suggested I try a bite—it was really good! After asking if it had potatoes (yes), I tried several times to refuse, but my friend cajoled—just one bite! She promised to make sure that there were no actual potatoes in the forkful. Eventually, I gave in.

I ate it quickly and handed the fork back, hoping nothing bad would happen. It didn't take long for me to feel a reaction starting. Within half an hour I was in the bathroom 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 how bad I felt, but I also wanted her to know that I had been right about not eating the stew. I do not remember the outcome of this reaction, but it was the first reaction that scared me.

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

Shortly after dinner we went for a walk. As we walked, I could feel a reaction starting. I said nothing, and was grateful for the darkness as dusk fell. I could feel my throat tighten, my back crawling with itchiness and hives I knew were forming there, my lips and face prickling with heat. We walked further, and the further we got from her house the more anxious I felt. I asked if we could go back, my words feeling awkward through my lips, and she said we would go a bit further and then turn around. When we finally arrived at her house, the light from the entrance flooding over us, she gasped. "What happened to your face?!" she shrieked, calling for her parents. I said it was from the dinner, and asked her to tell her parents to call my mom. A few moments later the phone was in my hand and I was asking for Benadryl and my inhaler ... the planned sleepover that night abruptly cut short.

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. Food allergies can be difficult for people to understand. How can something so harmless to one person be deadly to the next? How can something as small as a peanut or potato chip cause such a disastrous reaction? Since potatoes are nowhere close to being one of the top most common allergens (things like peanuts, tree nuts, shrimp, eggs, milk, and so on), some people don't take the declaration of a potato allergy seriously, and there are no labelling requirements for warnings on packaged foods. This means that potato can easily be hidden in foods, and I have had some "mystery reactions" to food that, despite having access to ingredients lists, I was never able to determine the cause and chalked up to hidden potato contamination.

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 worse, feeling my bottom lip stiffen with 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 one was going to be a bad reaction, I excused myself from the table early and went to my room. I took a few puffs from my inhaler, curled up on my bed, and stayed there for hours, alternating between trying unsuccessfully to sleep and running to the bathroom. Painful cramps rolled through my stomach in waves. Swallowing felt like a ping-pong ball bobbing up and down my throat. My face and back itched intensely. I was miserable ... and told no one, campers or staff, what was happening. I should have been in a hospital. 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 the hives covering my face. By the time it was lights out, my stomach was finally calming down and the itching and swelling was fading. 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. Back then, allergies weren't as common as they are today, and it wasn't until high school that I met peers with food allergies. In my mid-20s I was tested for the first time with a skin prick test that confirmed the allergy 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 potatoes directly. Through experience rather than education I learned about the concept of allergen cross-contamination. I often refused even if an adult said it was okay, unless it was my parents or someone who knew me, and my allergy well.

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 after one or two bites, 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 usually not as severe. Over the years a few other mild food allergies, along with severe environmental and seasonal allergies, cropped up. At some point during my teens nuts went back on the menu. I went through a period in my teens and early 20s where I experienced some severe reactions from cold urticaria—a couple just as scary as my worst food reactions. During all this time I continued without carrying an EpiPen, and I did not think of my allergies as that severe. Even after learning that allergies could be life-threatening, I didn't think there was any real risk of having a life-threatening reaction.

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-lessons 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 sitting 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 minute 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 treated the minor reaction that resulted from the contact with a Benadryl, and 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 overreacting. I had never gone to the hospital for a reaction, and I hadn't died, after all. Maybe I was being overly-paranoid carrying an EpiPen. I hadn't had a severe reaction in so long ... maybe I would someday outgrow the allergy. I wondered if maybe someday I would be able to eat a potato chip without something horrible happening. I had even discussed the prospect with friends, deciding that poutine would be my first potato-based meal if I could ever eat it.

I thought that way until two nights ago. Two nights ago, I almost used the EpiPen.

A few nights ago I 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. I had swallowed the chip fragment too quickly to spit it out once I realized it was potato.

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 exposure. Some itching, maybe some wheezing. Yet, I had never actually eaten potato. I had a few close encounters with French fries that I spit out immediately, but beyond that cross-contamination and traces of potato starch was it.

Five minutes after eating the piece of potato chip my mouth and lips 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, by this point, was itching even more and starting to prickle 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, bright red.  The itching spread to my entire scalp, then spread down my neck to my chest and back. The itching was soon joined by hives. 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 constricted, 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. My nose and ears were so itchy and congested that I had sneezing fits. My heart continued to race. My throat felt tight. Maybe I need my EpiPen, I thought, maybe I really do need it ... I got the device out of my purse and even took it out of its protective plastic case, debating. I was terrified the next step in the reaction would be me passing out or my airway closing.

In hindsight, I probably did need the EpiPen, and certainly some emergency medical attention and monitoring. In the end, I didn't use the epinephrine or call 911. I took another Benadryl, used my inhaler, and sat with the phone nearby in case things progressed any further. I concentrated on not scratching 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 two it began to slowly fade. At that 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 and after checking the nutritional label (15g of carbohydrates), I zoomed in on the low-contrast black text on red background and squinted through the hard-to-read capitals:
I stared at the package in disbelief, thankful I had checked. 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 stuff that could kill both of us. I asked if she knew of anyone else at work who would enjoy them and, most importantly, find them harmless.

Monday, May 6, 2013

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 callsmany 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.

Wednesday, May 1, 2013

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.