Fundraising Videos for a Cure

I suppose the reason why there's so many fundraising videos floating around the internet is because it's summertime when all the JDRF walks happen. I was on YouTube the other day and searched for "diabetes" just to see if anything interesting had been added, and found a ton of these slideshow-set-to-music-type videos. And they all made me want a cure, of course, watching the kids. Probably more than the average person, even.

But it got me wondering. I've heard some people complain about how so much fundraising for type 1 focuses on kids and making people feel sorry for the kids. I, personally, don't feel that living with type 1 is any easier as an adult than it was as a kid, although perhaps because kids are supposed to be so innocent and carefree in everything else it is more unfair for them. But I started to wonder if a video could be put together with the same idea, fundraising for type 1, except focusing on adults instead. I don't know if it would evoke the same types of emotions. I know some adults would probably hate it because they don't want people to feel sorry for them or treat them any differently—but I'm sure parents feel that way, too. And besides, this is fundraising; you've got to have that feel-sorry-this-is-so-unfair factor.

I haven't done the Walk in years, not since high school, and I can't say I've really been involved in any local diabetes events, although I would like to change that over the coming year (there are type 1 and pump support groups here which I've never attended, for example). But still, I think an adult-focused fundraising video could be interesting even just from an experimental viewpoint to see if it could be done. And let's face it—"juvenile diabetes" doesn't disappear once we turn eighteen.

I don't really have the resources myself (namely, dozens of photos to use) otherwise I might try in some of the free time I have left before school (read: work) starts.

The Most-Feared Complication

It's been shown in more than one survey that blindness is usually the most-feared complication of diabetes. In fact, blindness isn't just one of the most-feared complications of diabetes, it's also one of the most-feared conditions period. In one study it was topped only by the fear of cancer and AIDS.

As someone who has never known any difference, I'll admit to being a bit miffed by this fear. I understand that it's scary, I just don't understand how it can be more scary to most people than things like heart attacks and kidney failure! But I suppose it's understandable. Blindness is a low-incidence disability, and so most of what people know about it is what they see in the media. Think about some of the inaccuracies portrayed about diabetes in the media and you'll get my meaning.

So I'd like to use this post to talk not about diabetes, but about that thing called blindness that many poeple find so uncomfortable to think about. To me it's normal, but I'm sure others feel about it the way I do when I read of people getting limbs amputated or having a heart attack: I cringe, hope it never happens to me, and quickly surf away.

First, some basics. My blindness is not actually caused by diabetes. I was born three months premature, and life-saving treatments I received during the first few months of life (such as being on a ventilator for an extended period of time) caused damage to my retinas due to extra oxygen I received and possibly other factors (they are still doing research on the exact causes of this condition). It's called retinopathy of prematurity, and it is in fact the same disease that creates diabetic eye damage (diabetic retinopathy), just with a different cause. I was mainstreamed in regular elementary and high schools and have never set foot inside a school for the blind. Growing up my vision was never something to hold me back. Downhill skiing, skating, gymnastics, figure skating, speed and synchronized swimming, baseball (yes, you read that correctly), track and field, hiking, spontaneous games of rollerblade hockey with my brothers, acting, sitting on student council, being a writer and editor for the high school yearbook and newspaper, and taking part in school plays and performances all figured into my childhood. I now work part-time within the regular school system with mainstreamed students who have special needs. (I substitute teach in regular education classrooms the rest of the time.)

I am not totally blind. Actually, nearly 90% of "blind" people have some amount of usable vision. They might be able to disginguish large objects in their path or identify objects when they hold them close to their face, or see things well within a few feet but not in the distance, or even read newsprint. Yes, there are some blind people who can read newsprint. Blindness exists on a spectrum, although most people don't think of it this way. Most people think you are either fully sighted or totally blind; the lights are on or they're off. But in reality there exists everything in between. Those of us "stuck in the middle" between being fully sighted and having little to no usable vision are referred to as having "low vision," and you'll probably see me using that term a lot in this blog.

The term "legally blind" is a legal term used to determine eligibility for special services and programs, and it doesn't mean much outside of that. But for the sake of ease when I say "blind" I usually mean all people who fall within this category. Legal blindness is a visual acuity of 20/200 or less in the better eye, or a field of vision of 20 degrees or less, with best correction (glasses or contact lenses). This means that there is no such thing as being legally blind in one eye, and there is no such thing as being legally blind without your glasses but having 20/20 vision while wearing them. Just like there's no such thing as having "borderline" diabetes, even though it's something the general public likes to talk into existence.

Visual acuity, for those who may not know, refers to clarity of vision. Someone with 20/200 vision sees something at 20 feet with the same level of clarity as someone with good (20/20) vision could see at 200 feet. The bigger the second number, the worse the vision. It's not that objects look blurry, although they might, it's just that things need to be bigger, sharper, and closer in order to be seen if someone has a low visual acuity. Visual field is the sum of everything you can see without having to turn your head. If you have a full visual field you can probably see everything in front of you and a fair bit to either side. If you have a visual field of 10 or 20 degrees it's called tunnel vision and might be like looking through a paper towel roll or even a straw. In order to see anything to the side you have to turn your head ... but if newsprint is directly in front of you then you might be able to see it perfectly clearly.

My vision is measured at approximately 20/600, meaning I can see from 20 feet something that someone with "perfect" vision could see from 600 feet away. But this doesn't really tell you much about what I can and can't see, does it? So here's layman's terms:

I can see pretty much everything you can see, I just can't see it in as much detail or from as much distance. I can see the horizon, and the clouds, and trees and grass and cracks in the sidewalk. I can't see a plane in the sky, however. I can't see individual leaves on trees or individual blades of grass or the texture of pavement. It's difficult to tell the difference between a crack in the sidewalk and a step sometimes. I can see people across the street but can't recognize them (think colourful moving blobs). I might be able to recognize a person a few feet away from me if I am expecting them to be there, but I would not recognize someone sitting across from me on the bus. I can see cars moving at an intersection and can see traffic lights when it's dusk or overcast, but not when it's sunny. I can read print if it is large enough and I can hold it closer to my face. I can read regular-sized print by squinting and screwing up my face and using a lot of guesswork (it's not pretty), or else being more sane and using a magnifier. I can and do read braille for some of my reading, particularly anywhere away from my technology-laden desk. I also use braille when teaching because I need to do a lot of oral reading to groups or classrooms full of kids. I travel using a white cane most of the time, to let the public around me know that I am visually impaired and that I might not see the traffic light change and definitely won't see them waving at me to go ahead and walk. But I don't use the cane one hundred percent of the time to get around. I have a rather large collection of technological tools that allow me to access various things such as printed materials, but I will do another post on all that stuff or else this one will turn into a book.

My vision varies somewhat. Lighting, how familiar I am with the environment, eyestrain, and especially my blood sugar levels have a big impact. When my blood sugars are high my vision gets quite a bit worse and things like reading large print and getting around become more difficult. After high school, when my diabetes control was at its worst, I actually trained with a guide dog. I worked with her for two and a half years until to everyone's surprise my vision suddenly improved (not to normal, mind you, but to what it had been in high school). I didn't clue in until then that its improvement corresponded to an improvement in my A1c of almost 1.5% for the first time in about five years, and that's when I made the connection between diabetes control and vision (of course now everywhere I look it lists blurry vision as a symptom of high BG). Because of this improvement, and because of some ongoing minor problems with obedience, I made the decision to retire her, although she still lives with my parents as a pet. I am not sure why blood sugars seem to affect my vision so much more than everyone else, but I suppose because I use every scrap of vision I have, any little change makes a bigger difference.

Being visually impaired is not "hard," not in the way that having diabetes is hard. If you were to lose your vision it would be harder for you than it is for me, just as it's probably harder to be diagnosed with diabetes as a 25-year-old than it is as a 5-year-old, psychologically-speaking. There is almost nothing that I can't do without some modifications, except for maybe drive (legally, at least ...). Anyone reading this who might be facing visual impairment as a complication of diabetes (or heck, any other eye condition) should know that it might be hard at first, but it will not be the end of the world and anything you could do before is still possible, you just might have to learn some new skills and do it in a slightly different way.

And now that those basics are covered, you won't be utterly confused when I talk about reading braille one minute and checking my pump screen with a magnifier the next, or seeing a traffic light change while using a white cane. Not that you won't ever be confused—even my parents are still confused sometimes trying to figure out what I can and can't see. But that's the world of low vision, or partial sight, or legal blindness, or any of those other terms that are used for those of us in between the two extremes.

The First Post

I feel a bit strange launching into a blog without making some sort of formal first post. So here we are.

It took me a long time to come up with a title for this blog. I wanted something that somehow reflected both diabetes and visual impairment. I finally settled on this name, Shadows of Perfection, because (I admit it) I'm a perfectionist. I will reword a sentence multiple times until it sounds just right. But in everyday life I have to settle for less than perfect. No matter how hard I try, I will never have "perfect" health. No matter how hard I try I will also never have perfect blood sugar control, even though I do think I could do better than I currently am. And I get through every day with less-than-perfect vision which, even with all the magnifiers in the world is sometimes not enough. Yet I have to be comfortable with all of this living in the shadows of what some think of as perfection, or I would go crazy.

I'd like to use this blog as a place to write mostly about diabetes, but also about how visual impairment affects diabetes. Most people know next to nothing about visual impairment (how many of you reading this know what terms like "legally blind" mean?). Just as there are many misconceptions surrounding diabetes, there are many misconceptions surrounding visual impairment. In many ways diabetes and visual impairment are very different; they present very different challenges and require different coping strategies, but they are both things I must deal with every second of every day, in different ways. And there are some areas, such as product design and psychology, where they intersect in a major way.

So welcome to any readers who have stumbled upon this so far. I hope you find this blog as enjoyable and unique to read as all the others out there I've been lurking on (I suppose it's time I de-lurk myslf, eh?).