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Living with Diabetes

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When information is everywhere, so, too, is understanding problems. Allow me (Stephen) to share a personal example.

My son was diagnosed with Type 1 diabetes just before his fourth birthday. Previously known as juvenile diabetes, Type 1 diabetes is when your pancreas— for reasons unknown—stops producing insulin, a hormone we all need in order to live. Without insulin, your body has no way to convert sugar from carbohydrates into energy and no way to maintain healthy blood sugar levels. It is a life-changing disease.

When we got the diagnosis, my wife and I knew it meant big changes for our family. We knew that living with diabetes meant insulin shots. What we didn’t know, but quickly learned, was the sheer number of activities that diabetics must do to maintain their health. One activity is finger pokes, where you draw a small sample of blood to test blood sugar levels. If you’re diabetic, you do this about a dozen times a day to make sure that your blood sugar levels are within a safe zone—not too high and not too low.

Type 1 diabetics also have to count carbohydrates on absolutely everything they eat. Setting aside social graces, most of us begin eating right away when a meal is served. Diabetics have no such luxury. Instead, they have to calculate how many carbs they think they’re going to consume, before eating. This is even more troublesome in restaurants, where access to nutritional information is nearly impossible, and where predicting their appetite is difficult. Will I want a dessert later or not?

And the reason diabetics count carbohydrates? So they can inject the right amount of insulin. These are the needle shots you so often see associated with diabetes. While healthy bodies are great at producing and regulating the amount of insulin to produce for all the carbs people consume, Type 1 diabetics must do so artificially, including the math needed to balance things out. Give themselves too much insulin, and they have a “low,” quickly leading to a diabetic coma. Not enough insulin, and they have high blood sugar, which causes long-term complications, including loss of limbs, eyesight, and failing organs.

All of this is a lot to learn and a lot to take in as a parent of a diabetic child. For the child, it’s a whole new way of living that—until a cure is found—overshadows everything else. My wife and I were fortunate in that our hospital had a superb training program to prepare parents and children for this new life, this “new normal” that you quickly adjust to.

During the three-day “retraining” process, the hospital gave us a lot of useful information. They helped us process what to expect. And they gave us plenty of paperwork.

Among the many forms we were given, mostly of a legal/compliance nature, special attention was given to the form in Figure 1.1.

This is the sheet that you put on your refrigerator, the “one-pager” that is meant to organize everything you’ll do in a day. It is the checklist of all the things that you need to know: When to give your child insulin. When to test blood sugar levels. How many carbs they can eat. How many units of insulin to give. All the information you need to know is in this form.

This form is also broken.


FIGURE 1.1 The diabetes management aid provided to families as a daily checklist for monitoring blood sugar, tracking carbohydrates, injecting insulin, and so forth.

This form is so very confusing that nurses routinely spend 30 minutes explaining it. Moreover, a couple areas on this form are outright dangerous—if misunderstood, you could harm your child by giving them too much insulin.

After the nurse left the room, my wife looked at me and said, “You’ve got to fix this.” What you see in Figure 1.2 is my makeover of this chart.

As dramatically different as this version is, I want to highlight something: I did not add any information, nor did I remove any information. All that has changed is how the information is presented.

My goals were simple:

1. I wanted to create something that my son—at only four years of age—could look at and get a sense of what he was supposed to do. I wanted him to manage this disease from an early age. I needed him to understand what was expected of him.


FIGURE 1.2 This version of the diabetes chart has the same information as the one provided by the hospital. All that has changed is the visual design.

2. I wanted to give us, as parents, a sense of control. My wife and I needed to create something like this. Of course, we needed to understand what was expected of us. But on a deeper level, we needed something we could control. As parents, you’ve done everything right, fed your child the right foods, avoided the things that might harm a child. And yet, something like this happens, for no explicable reason. We felt powerless. Creating this chart was one way for us to assert some level of control over a small piece of the diagnosis.

Now, what about the after version? From a graphic design perspective, there is plenty to critique. The icons are inconsistent. There are some padding and alignment imperfections. Color schemes are meh. I could have fixed this with more time. But winning a graphic design award was not my goal. My goal was to make the information understandable and fixating on small tweaks wouldn’t make it much more understandable. This kind of transformation is largely functional, not aesthetic. Moreover, it’s something we can all do, or should be able to do, by the time you’re finished with this book.

If you can organize a closet or sort spices in a kitchen cabinet, you can do what I’ve done here. At the core, all I did was identify and align “like” information. If you look closely at the before version, you can see three kinds of activities listed (finger pokes, insulin shots, and eating), as well as the times for each; this information was—in the before version—listed, but not shown. By introducing a column for each of the three types of activities, then mapping those columns against the time of day, resulting in a grid layout, we could see more clearly when to do which activity. (This also allowed us to be explicit about when we should not do an activity as well, as indicated by the × shape.) This chart was largely about using space to hold meaning, something that we’ll explore in detail.

Beyond this sorting and alignment exercise, I added images to reinforce the literal things being referenced with words: the column headers had corresponding images (finger for finger pokes, needle for taking shots, a food tray for eating). Where finger pokes were involved, I grabbed a “drop of blood” icon (courtesy of a Google image search). And when it was time to give my son a shot, I reinforced the language of which type of insulin by adding illustrations of “H” or “N” vials of insulin. Where something was optional (“only if needed”), I used opacity to fade that back into the background, a type of visual encoding that we’ll also discuss.

Figure It Out

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