Monday, August 12, 2013

The Diabetes Phantom Tollbooth

As a child, my favorite book was The Phantom Tollbooth, by Norton Juster, with pictures by Jules Feiffer; much like Anna Quindlen of the New York Times opines, I thought it was "the best book ever." Shockingly, it was one of very few books that I discovered by seeing the movie adaptation first; I accidentally came across it during a visit to Florida, and my parents were deprived of much of an afternoon at the beach as I refused to stop watching. The story features a young boy named Milo, who is always bored, and is never satisfied with wherever he is or whatever he's doing. One day, a box arrives, "for Milo, who has plenty of time," and Milo grudgingly assembles a cardboard tollbooth with some mysterious coins and a child-sized toy car. Once through the tollbooth, he winds up on a quest through a series of magical lands that teach him the value of letters, words, numbers, senses, sights, sounds and the magic that knowledge unlocks. The book is filled with wordplay and puns, and it inspired me to pursue writing (an effect I'm sure it had on many curious children).

To me, the Phantom Tollbooth's many fantastic locations and wonderful puns can be applied just as easily to diabetes as to any other aspect of life. Here's a look through The Diabetes Phantom Tollbooth:

The book opens on you, newly diagnosed with diabetes. In a funk, depressed, you don't want to be where you are. A mystery package shows up, with a note: "TO YOU, WHO MAY THINK YOU NO LONGER HAVE TIME." When the Diabetes Tollbooth arrives, first, you have to put in your coins to get through. When we're talking about a toll, that's definitely a word I associate with diabetes.  Mental, physical and financial, you've got to pay these tolls to get through life.

Driving along the road, you first encounter The Doldrums: Here's where you get stuck early on in the book and in diabetes. It's grey, boring, and sad. No thinking is allowed, and certainly no laughing. You can get dangerously stuck in the Diabetes Doldrums, and it's difficult to get out; the Doldrums want you to stay, and they want to consume you. The Doldrums are a poor representation of life, but they're easy, if you don't care what happens to you. Everyone gets stuck once in a while, but the trick is to get out! Tock, the "watchdog" in the book, represents the wonderful Diabetes Online Community, with a CGM in his belly. Your best friend, he keeps you on track, telling you to think, imagine, and dream. It's hard work, but it moves you forward.

Next, you encounter The Whether Man: The Whether Man in the book knows that it's more important to know whether there will be weather than what the weather will be. He reinforces the need to always be prepared for any circumstance. He also knows there is no "wrong way" ahead; just your way, and my way, or someone else's way. Your diabetes may vary!

You finally come to your first city: Dictionopolis: Here we learn that words mean something, and impact the way we feel about our condition, our lives, and ourselves. Words like "brittle," "the bad kind," "noncompliant" are shown to be powerful negative weapons, that are combatted by words like "hope," "community," "friendship," "meet ups," and "ice cream." Here we also find that you can make it further by listening if you don't have all the info, rather than speaking, for like the Dictionopolis car, it "goes without saying." Often, people will be forced to eat their words, just as they do in Dictionopolis, so it is really important to think before one speaks, and to say something nice and tasty. Half-baked ideas are served for dessert, and just like real desserts, they're tasty and intriguing but dangerous if you eat too many, or take them too seriously. If you give your diabetes Short Shrift, you may be arrested by him (Officer Shrift), but you can be let out of jail if you display a Faintly Macabre sort of humour.

Your job in this world is much like Milo's: you have to find your sense of Harmony. Your sense of self has been split, with this diagnosis; the words you use to describe your world, your life, your self - they don't match what the numbers say. The numbers are out of whack and need constant correction. The words are fighting with the numbers as to which is more important, and have banished the princesses of Rhyme and Reason, who understand that words and numbers must be given equal importance. Nothing can be set right until Rhyme and Reason are returned. Armed with new words, you set out on your quest with Tock, the Humbug (how you sometimes feel) and the BEEtes (a giant bee that spells everything out for you).

Along the way, you meet a boy who grows to meet the ground, and you understand you must grow to meet your own set of challenges. You complain, and complain, but then you meet Dr. Dischord, who wants to cure the world of pleasant sounds so all you hear is noise, and you realize that constant complaining can purge your ears of the wonderful sounds of the world. Chroma the Great, who conducts the sunset, helps you to see the rich colour and texture diabetes can bring to your life, even though you must conduct your own symphony. Sometimes, like Milo, you get too ambitious and your colours go out of whack, or you seem to lose days at a time to this vicious disease, but with help you can get back on the conducting track and it might seem as if nothing had ever happened.

You get to the point where you're starting to take charge of this diabetes thing, when you encounter the Valley of Silence. It's so tempting to stay with the status quo and be quiet about what's "wrong" with you, but you see the injustice for all in remaining quiet about what needs to be done, and letting the message be controlled by a select few media narratives. You break the silence for good with activism, blogs, diabetes walks, petitions, videos. You spread the message of need and success far and wide.
The Dodecahedron

Now that you're interacting with other people and organizations, you suddenly find yourself on The Island of Conclusions. You get to this island by jumping; jumping to conclusions. Here we find many representatives of the media who deal with diabetes, and many other individuals who we deal with on a daily basis. As soon as a reporter assumes an older person has Type 2, or that there is only one type of diabetes, or that a thin person can't have Type 2, they would be off to the island. As soon as someone assumes you ate too much sugar as a child, that you brought it on yourself, could cure yourself with a diet, or that diabetes is easy to deal with and insulin is the same as a cure, they would go right to the island. We would love to actually send these people flying to the Island of Conclusions, where we wouldn't have to deal with them until we jumped to a few conclusions of our own (why isn't my BG coming down? Must be bad insulin. Couldn't be the pasta).

You finally find yourself in Digitopolis, the land of numbers; you try to figure out how all this math works and how it's going to be relevant to you living your life. While you figure out that averages don't tell the whole story and that you can run forever and not reach infinity (or, as we call it, perfection), you find some valuable tricks for your arsenal, guarded by the kindly Mathemagician (who may well have the face of your endo or your CDE).

The Dodecahedron shows you the many faces of diabetes, and you're introduced to Subtraction Stew - or, its real name, insulin. Insulin, like Subtraction Stew, is the only thing that can make you feel hungrier after you've eaten bowl after bowl of food. But, if you don't take it, Subtraction Stew takes on a whole new meaning: nothing you eat is actually absorbed into your system, and you can get thinner and thinner the more you eat; as the Humbug observes, it's like eating bowls of "FAMINE!" Eventually, you learn that, while they don't always add up like you would like them to, just like the words that don't always tell the right story, numbers are absolutely valuable tools that you must use to better live your life. Sometimes, they can even be fun, like when that pencil the Mathemagician uses as a wand pencils in a "no-hitter"!
The Mathemagician and King Azaz of Dictionopolis

The two sides of you have slowly agreed to work together, but you must make the final push; you have all the tools you need, but you and your few friends set out to find Rhyme and Reason alone. The Castle in the Air, that mythical-sounding place of true harmony, awaits. It can't be real; can it?

The scariest and most taxing part of the journey toward Rhyme and Reason is fighting your way through the steep, dark Mountains of Ignorance, which teem with demons of all types.

The Terrible Trivium is at the head of the demon pack. The Terrible Trivium gets in your way, big time. He is a minor demon, who puts you off taking care of yourself. He tells you to fritter away your time on other, meaningless tasks, because "in five years, there will be a cure." You must use your numbers to look at the real situation and pull yourself away from this seduction, reminding yourself that he has no real face.

Other demons chase you and you must fight them: the Demon of Insincerity, a false friend who sounds big and scary, but has no real power; the Overbearing Know-It-All (just listen to me; I know more about you than you know about yourself), the Threadbare Excuse (I was too busy to take care of myself), the Gelatinous Giant (just try to struggle out of these mountainous insurance claims! You must fight him with activism) and the snake-oil salesmen who form the twin Gorgons of Hate and Malice. It's a hard struggle, and it feels like a lifetime, but you make it to the stairs at the base of the castle, where you encounter one last gatekeeper: the Senses Taker.

The Senses Taker, who wants to take all your senses, is a frightening reality. Here is where you truly learn the power of your words, and yourself. You fear the loss of yourself, your identity; more tangibly, you are terrified of the loss of sight, of heart, of feeling in your limbs. But you fight back with love and laughter, because, in the end, nobody can take your vital sense of humour. Past the Senses Taker you go, and up those precarious steps with every fibre of your being and those friends by your side, and you open the door to the Castle in the Air.

And there Rhyme and Reason have been, waiting for you, all along.

You feel whole. Your journey is complete. You're a hero: adulation, banquets and all. Your A1c is the best it's ever been. Your endo wants to throw a ticker-tape parade. But then, you have to say goodbye, and really step out on your own, to a future that could be just as scary as this parable got at its worst.

You wake up. You're suddenly far away from Digitopolis and Dictionopolis. Tock, the Humbug, the BEEtes; they're not always with you. You've come so far and learned so much, and you recognize its worth. But you know there's so much left to be done, and learned, and experienced. Today, like yesterday was, and like tomorrow will be, is the first day of the rest of your diabetic life.

The tollbooth is gone, but you find a note left in its place, and in its own way, it means everything.



  1. damn. it. this is AWESOME! you've really been on a roll lately...I loved the "lies" post from a little while ago, as well. and Tollbooth (along with From the Mixed Up Files of Mrs. Basil E. Frankweiler) was one of my ultimate faves. thank you for this - totes brilliance. :)

    1. Thanks so much for this comment! I knew there had to be other Tollbooth fans in the D-community. It's just such a good book.