Tuesday, June 19, 2012

The Glasses Debate

I am debating whether or not to get glasses.

For most people, this would sound silly. Either glasses will help or they won't, right? Either glasses are affordable or they aren't ... right? For me, and anyone else with very low vision, it's a more complicated decision than that.

I don't have any kind of refractive error such as farsightedness or nearsightedness. This is actually unusual, as most people with my eye condition have refractive errors. Nonetheless, in grade three I was prescribed +12.5 diopter reading glasses to provide magnification only. I still remember how excited I was while I waited for the glasses to be made. I would stop many an adult who would listen and explain how I was going to get reading glasses that would "make it so I can read like this"—as I held a book away from my face at a semi-normal reading distance—"instead of like this," and I'd squash my nose up against the page and squint, to demonstrate how I currently had to read.

Ah, if only that were the case!

The glasses did allow me to read for longer periods of time and made letters look crisp instead of fuzzy; but I wasn't able to read significantly smaller print with them than I was without. And even when reading large print, I still had to hold material so close it touched my nose to see it. A year or two after I got the glasses, an eye doctor asked me to read newsprint while wearing them. Even holding the paper up against my nose I couldn't read three words without it being obvious that I was just guessing. He turned to my parents and said, "These don't help her at all." I felt defensive about him criticizing my glasses. They did help me! They made reading easier—and besides, I definitely needed them to be able to draw well!

I used the glasses daily throughout elementary and high school. Even with them, I still needed large print books and handouts, but they carried me through many a late night of homework or an afternoon spent drawing. In addition to the glasses, I used a slantboard to bring material closer to my face (so that I didn't develop posture issues hunching over as I worked), and also a task light which I used to put so close to the page—and my face—as I worked that it would sometimes "fry" stray strands of my hair. I used to develop an ink smudge on the tip of my nose from it rubbing against the reading material, and red spots on the sides of my nose from the weight of the glasses, but I didn't care.

Then, in college, three things happened. First, the reading load increased exponentially. In high school we had been expected to read a couple dozen pages a week from our textbooks—and, in truth, I skimmed a lot. (I still graduated with honours.) In college, however, we were suddenly expected to read a hundred or more pages a week. And that wasn't even including the "extra" material we had to read when a term paper was assigned! I found myself spending hours each night reading large print, and I was jealous of people who were able to read on the bus on their commute to and from campus, which I wasn't able to do.

Second, my CCTV (closed-circuit television, now more commonly referred to as a video magnifier) that I'd been using for the past ten years suddenly bit the dust in the middle of the semester. Since there were few large print materials available in college, I had begun to rely on this device for almost all my reading. And when it died, I suddenly found myself completely unable to do any homework at home. For the few weeks it took to replace the unit I spent hours on campus using the old, dilapidated CCTV in the college library.

It was at this point that I decided that my complete reliance on technology and my complete inability to read and write effectively without it was ridiculous. Suddenly, the braille I had been taught in early elementary school—but had never actually used for schoolwork—became useful. I relearned the code on my own (which was made much easier by the fact that I'd already learned it once as a kid), and began using both hardcopy braille and a Braille Lite on loan from the government. Suddenly, with the portability of the braille notetaker and the ability to put dozens of books and other documents on the device, most of my reading and writing was done in braille. Later, I exchanged the Braille Lite for a more modern BrailleNote, which was then upgraded to a BrailleNote Apex—which I still use at present in my work as a graduate student. With braille, I was suddenly able to do things I've never done before, such as read in bed, read and write on the bus, reference notes during class discussions, or study at a regular study carrel in the college library rather than having to sit in the corner of the computer lab where all the equipment for students with disabilities sat.

And the third thing that happened was that I lost my reading glasses. I didn't mean to; and in fact at the time I was still utilizing them for some things such as when using the computer and while drawing. But at some point they disappeared, and despite searching at home and school I was unable to locate them. (I always wonder where lost items like that go, and whether some random student found Coke-bottle glasses sitting at a study carrel in the library ...)

Parallel to my sudden rediscovery of braille as a useful skill, technology for those who used large print took leaps and bounds in advancement. In recent years I have acquired a flatscreen desktop video magnifier, a portable video magnifier, the ZoomText software on my computer has greatly enhanced magnification abilities compared to versions ten years ago, and I have an iPad which has magnification and other accessibility features built-in. Years after I began using braille, technology in the realm of large print had caught up to a degree that I am able to comfortably use it even for somewhat lengthy reading tasks—although I still use a combination of braille and large print on a daily basis. At some point during the past ten years I did replace my reading glasses. But, with my new technological tools that enable me to increase the font size to whatever degree was comfortable, that allowed me to sit back at a more ergonomically-friendly distance, and that allowed me to access virtually any material in braille, my glasses became relegated to the role of nice-to-have rather than essential.

And so, since I don't use my current prescription all that often, I probably won't get it refilled. I have also noticed problems with the frames on my current glasses: they interfere with the angle at which I prefer to look at print (which is down-right) when reading. So, if that were fixed, I might use them more. But mostly I am thinking that I might want to go one or two other routes: I either want stronger lenses that will enable me to read smaller print, or I want weaker lenses that will enable me to focus at my "new" technologically-enabled reading distance of 10-12 centimetres. I am not sure the second is even possible, but I've made an appointment with the optometrist I see who specializes in low vision so that I can ask.

There are issues against glasses, though, one being cost ($600+), and the other being the fact that I don't really use them. Still, it would be nice to have glasses I that could use comfortably while on the computer ... or, alternatively, glasses that might enable me to read the display on my Animas Ping insulin pump without having to guess (never a good thing when calculating bolus doses!). In the end, though, I'm currently getting along fine without glasses, and having new ones might disrupt my current working system of technology and print, speech, and braille reading.

This issue of when and where to use vision and when and where to use other techniques (such as braille, speech output, a white cane) is an issue those of us with low vision are constantly struggling with. Vision is said to be the dominant sense among humans, and from my visual-learner-perspective, I'd have to say that's true for me. If I had my way, I'd use my vision for everything and just enlarge things to a point that I could see them and take as long as I needed to read. But if I'd gone that route, I wouldn't have gotten through two undergraduate degrees taking full courseloads, I wouldn't have gotten through student teaching at all, and I probably wouldn't be in graduate school working on a 100-page research thesis. It's taken me years to become truly proficient in braille and to become comfortable reading academic material with speech output. Add to this mix of factors the fact that different individuals and groups have different opinions about what is "right"—some believing those with low vision should use use their vision to its maximum potential even at the cost of eyestrain or lowered achievement while others believing that those with low vision are essentially blind and should minimize use of residual vision—and the situation becomes even more complicated, throwing a "peer pressure" factor into the decision-making process.

I, personally, have come to a point where I am comfortable using a combination of methods. Large print when it works best, speech when it works best, and braille when it works best. I am proficient in all three areas of access, and most people do not necessarily have this advantage. Yet, even for me, whenever a new low vision gizmo comes out on the market I have a little stint of wondering whether that might be the solution to being able to read print for extended periods of time. Often, I will find somewhere to borrow the device from and will try using large print alone for a while; but inevitably, I always find myself coming back to braille and speech output. This issue of wishing to use print is a thousand times worse for people who are new to low vision. I usually come around to speech and braille again fairly quickly, even if they aren't my preferred medium if I were to have unlimited time (which, obviously, I don't; the world doesn't work that way!). But for many people who are losing vision, this quest for the perfect low vision device that can fix their vision dominates their life for months or even years.

And so, I find myself wondering if I really need new glasses. Are they worth getting, being more of a might-be-nice convenience rather than a necessity? At the price, maybe it would just be a waste of money. Maybe I'd use new glasses as seldom as I use my current ones, even with better frames and a better prescription. But, on the other hand, maybe it would make some small aspect of life such as computer use or using my insulin pump or reading all the other little electronic LCD devices that pervade our everyday lives easier. (Just today I struggled to use a point-of-sales device with a touchscreen I could not read at all, and had to try three times before, with assistance, I was able to hit the right areas of the screen in the correct sequence.) It's too bad I can't just try out a sample of the potential new glasses for month or two to see if they're useful; but with such a strong prescription it's often an ordeal just finding a shop that can actually make them. For the time being, the debate rages on in my mind. Hopefully the appointment with the low vision specialist will yield some direction.

Saturday, June 16, 2012

3.5 Hours

The term insulin dependent isn't used all that much anymore. When I was first diagnosed with diabetes, my new Medic Alert bracelet said insulin dependent diabetes mellitus. Now, it says Type 1 diabetes. Many people don't think about the fact that they are dependent on various hormones their body produce on a continuous basis for survival. I am vaguely reminded of it every time I change my pump site, feeling a few drops of the life-sustaining hormone that my body is unable to produce itself fall onto my hand as I fill my pump tubing. Usually, this system of motors, tubing, and computer chips that I rely on works flawlessly and I barely think of the fact that, were it taken away, I would quickly find myself in trouble. But, a few times each year something goes wrong and interrupts the flow of insulin into my body, and I get a stark reminder of what insulin dependent means.

I change my infusion set every two days, and usually fill my pump cartridge only partially so that I can change that at the same time. Today was a site-change day. So, around 11:30 I ripped out my old infusion set, disinfected a patch of skin on my left arm, put down some Tegaderm, and poised my hand with the new infusion set above the correct spot before holding my breath, adjusting the angle, and sliding it in. I withdrew and disposed of the introducer needle, filled a new pump cartridge, primed the tubing with insulin, snapped the tubing to the infusion set, and finally filled the tiny cannula now nestled under my skin with insulin.

Then I tested—a perfect 4.7—and bolused for my standard Saturday lunch of 25 grams of carbohydrates. I ate lunch as I worked on my master's thesis.

An hour later I felt a bit off, and my first instinct when I feel off is always to check my blood sugar. I found it at 11.1, which I bolused a small correction for. I thought it was a bit odd that I had risen so much in just an hour, but then again I'd also just eaten, and 11.1 is not an alarmingly high reading for me, so I didn't dwell on it.

Soon I needed a break from my thesis and ventured out into the rainy weather to go to the mall for a bit. I stopped at Starbucks briefly and got my standard drink, bolusing for 10 grams of carbohydrates but not testing because it had only been about an hour since I'd tested last, and I wasn't feeling particularly high or low.

An hour and a half later when I got home, however, I definitely felt high, which is never a good sign. I tested, and knew what the result would be even before the 21.9 flashed onto the screen.

My mind immediately ran back through the past few hours. I hadn't missed a bolus. I hadn't eaten anything ridiculous. I wasn't stressed or sick. The only thing I could think of was that I had changed infusion sets three and a half hours earlier.

I checked for ketones, as is standard when dealing with "unexpected" highs. The strip darkened to the second-to-last colour, meaning I was producing a large amount of ketones. Clearly, something was not right with the insulin delivery system. Either the insulin wasn't being delivered, wasn't being absorbed, or wasn't potent.

And so, I pulled out the newly-inserted infusion set and stuck myself with another needle in a completely different location. The infusion set I'd just removed had a small kink at the very tip of the cannula. A kink like that is all it takes to completely cut off the flow of insulin. Snapping the tubing onto the new infusion set, I programmed a big correction bolus. And then the process of waiting and monitoring to make sure my blood sugar comes down started.

Three and a half hours ... Those few hours without insulin is all it took for my blood sugar to soar from perfect to four times the normal level. That's all the time it took for my body to begin the process of breaking down fat as fuel and producing ketones as a byproduct—a process that happens when the body can't access glucose due to lack of insulin; the start of the process that, if not interrupted, leads to diabetic ketoacidosis then death.

An hour and a half after giving myself a correction with the new infusion set—insulin now being delivered properly—my blood sugar is down to 13.2. Still high, but definitely heading in the right direction. I think about the amount of insulin I take each day, which adds up to about half a cubic centimeter of liquid. Such a small amount, and yet I am dependent on it each day not only to keep good control of my blood sugars, but just to stay alive. Even a few hours without it and things fly out of control. It makes me feel a sense of awe at how such a small thing can be so important, and grateful that I have easy access to insulin every day.

Sunday, June 3, 2012

How Do You ... Use a Computer?

I get many questions online about how I do various everyday things as someone who is legally blind, so I've decided to start a series of posts called "How do you ...?" This first one will cover how I use a computer, and future ones will cover topics such as how I read, get around, and manage diabetes. Feel free to post in the comments section with any topics you would like me to cover in this series and I can add them in.

Many people wonder how someone with little or no vision can use a computer. Often, people may assume that a friend or family member must read the screen aloud and type for the person who is blind or visually impaired. Fortunately, this isn't the case! Touch typing requires no modifications; in fact, people who are visually impaired often type much faster than those who are sighted simply because they must learn to touch type, and can't cheat by looking at the keys. They also tend to use computers far more often. For people who are sighted, computers are a convenience, tools that makes things faster and easier. For people who are blind or visually impaired, computers are a necessity, a tool that makes things that were formally impossible possible. Without computers, I personally would find it much harder to correspond with friends, read the daily news, conduct research, read books and articles of interest, and do tasks such as banking and filing. Not to mention the things everyone else does, like participating in social media!

All the major operating systems out there (Windows, Mac, Linux) are accessible to people with little or no vision through various types of assistive technology. Portable devices including tablets and cell phones are also accessible to varying degrees depending in large part on the brand. Those of us with visual impairments use the same operating systems and programs as everyone else, but we rely on various types of access software and, in some cases, on hardware like braille displays to use the computer.

I myself use a combination of the technologies listed below. This isn't usually the case; most people use only one or two of them. What I, and others, use at any given time depends on what the task is.

Close up of the corner of a computer monitor displaying large, high contrast printMost people with visual impairments, such as myself, have enough residual vision to read large print. In that case, they can use screen magnification software to access a computer. This software enlarges all text and graphics on the screen, and provides visual enhancements of things like the mouse cursor and caret (the little blinking bar that shows where you are typing). Since the entire screen is enlarged, not everything can fit on the physical monitor at once, so the user needs to move the view around by moving the mouse pointer or using keyboard commands. The software automatically jumps to the area of the screen with focus (the area where the mouse cursor or text caret is, or where something else changes). It can take some getting used to, but for the most part the software is easy to learn, and for many people this software makes the difference between being able to read the screen and not being able to. Examples of popular screen magnification software include ZoomText and MAGic. Almost all screen magnification software is also available with some reading features that provide speech output, so that users can have long documents and windows read aloud using synthetic speech, if needed.

For people who have to use high levels of magnification (like me), which can make navigating the screen with magnification software alone difficult, as well as for those who have little to no vision and who can't see enough to read even magnified text, there is screen reading software. A screen reader takes the contents of the screen and translates it into synthetic speech. Since a screen reader user likely won't be able to see a mouse cursor on the screen, navigation is achieved entirely through keyboard commands. That's right—screen reader users do everything sighted users do but never touch the mouse. Sometimes, this means that a screen reader user can open Microsoft Word or compose and send an e-mail even faster than a sighted, mouse-dependent person. Learning to use screen reading software has a bit of a learning curve because the method of access is entirely different from what most people are used to (keyboard input and speech output, compared to mouse input and visual output), but once a user is proficient they are able to access virtually anything. Examples of popular screen readers include JAWS for Windows, Window-Eyes, and System Access. There is also a very good open-source screen reader called NVDA (NonVisual Desktop Access), and VoiceOver is an integrated screen reader that comes included on every Mac.

Close up of the pins on a braille displayAs well as magnification and screen reading software, which are the two most popular methods of computer access, some people also use refreshable braille displays. These displays use tiny pins that raise and lower to form a line of braille characters (ranging from 12 to 80 cell models). Braille displays require a screen reader in order to run, and due to their expense (ranging from $1,500 to over $10,000!) and the low braille literacy rate, they are not as popular as using speech or large print. For those who use them, however, they are invaluable because they provide direct access to what is on the screen—including spelling, formatting, punctuation, and other things that are difficult to access with speech. Tasks such as proofreading or skimming text, as well as computer programming, are much more easily done with braille than with speech. Braille also provides a way for someone who is totally blind to operate a computer without needing headphones (such as in a library or lecture hall).

In addition to the usual desktop and laptop computers, tablets and mobile phones are also accessible. Screen magnification and screen reading software (including braille display support) is available for Symbian, Windows Mobile, Android, Blackberry, and iOS devices. In fact, many companies (most notably Apple, though other companies are slowly beginning to follow suit) are beginning to include this software in every product so that a phone or tablet can be used by someone with a visual impairment without having to spend hundreds of dollars on extra software. The next area that is beginning to open up in terms of accessibility is entertainment, including talking TVs and digital cable boxes.

The one area of computer access that lags far behind are all the little LCD screens we find everywhere in our daily lives, from point of sale machines to microwaves to printers and office phones. Hopefully, these miniature computer systems will become accessible in the near future. (This complete lack of accessibility extends to virtually all diabetes supplies, especially the higher-tech devices like pumps and CGMs. But that's a topic for another post ...)

I hope this post has been helpful (and hopefully interesting, too!). Feel free to post any comments or questions you have, I'd be glad to discuss them!